Lately it’s gotten worse. A letter earlier this month made me feel suddenly lightheaded as my vision started to fade. As I sat on the floor, my mind raced through all of the potential bad news the envelope could contain for a disabled Supplemental Security Income recipient like myself.

Many more people could soon be in the same position, more often. A new proposal from the Social Security Administration would cut $2.6 billion dollars over the next decade from the two core programs it runs that comprise the disability safety net: Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). The cuts would start with letters — 2.6 million more of them.

A letter is the first notice a disabled recipient of SSDI or SSI gets that they’ve been selected by Social Security to undergo a “continuing disability review” (CDR). As the agency puts it, CDRs are used to “determine if disabled beneficiaries still meet the medical requirements for eligibility.” In other words, a CDR is a kind of “are you still disabled enough for SSI or SSDI” audit.

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After the audit, if Social Security believes a beneficiary’s medical condition has improved such that they no longer meet Social Security’s stringent criteria for disability, their benefits are terminated. It is now much easier for Social Security to say that a disabled person has medically improved thanks to a 2017 rule change that allows the agency to disregard medical evidence from a beneficiary’s own doctors. Benefits are also terminated if the disabled person does not respond to the CDR.

The Social Security Administration is proposing a dramatic ramp up in the number of CDRs it conducts, adding an additional 2.6 million of them over the next decade. And that’s not the only change Social Security wants to make to the CDR process.

When an applicant is approved for disability benefits, Social Security assigns them to a category that determines how often they must go through a CDR. If Social Security thinks a disabled person’s medical condition is expected to improve, they set a CDR for every 6 to 18 months. If it’s possible the medical condition will improve, they set a CDR for every three years. And if the person’s medical condition is not expected to improve, they set a CDR for every 5 to 7 years.

Social Security officials want to create a new category, “medical improvement likely,” that will get a CDR every two years. And they propose to move hundreds of thousands of people from less frequent CDR categories into the new category.

The vast majority of disabled people receiving SSDI and SSI are not represented by counsel through the CDR process. The maximum amount that SSI will provide to a disabled beneficiary is just 74 percent of the federal poverty level — currently $12,490 for an individual. As of November 2019, the average SSDI benefit was just $14,855 per year. Most SSDI and SSI beneficiaries simply do not have the money to hire someone to help them navigate the CDR process. Instead, they find themselves facing the byzantine, and all too often hostile, bureaucracy of the Social Security Administration on their own — something that I find daunting even with the benefit of a law degree.

Social Security is also proposing to focus the targeting of those CDRs on disabled children, people with certain medical conditions such as leukemia, and disabled older adults. Under the new rule, many disabled children would face a mandatory CDR at six years old and another mandatory CDR at 12 years old.

In both adults and children, the rule would change the category of certain mental health conditions including anxiety-related disorders, depressive, bipolar and related disorders, attention-deficit hyperactivity disorder, and impulse control disorders to a CDR every two years.

But Social Security has not provided estimates of how many disabled people from each of those groups will be impacted. In fact, Social Security hasn’t released any estimates of how many people will be impacted, period, only the number of CDRs it expects to undertake. (A single person could face multiple CDRs in that time period.)

Kathleen Romig, a senior policy analyst at the Center on Budget and Policy Priorities, explained by email that “SSA provides no estimates of the number of people who would be affected. No number of people who will be subject to additional reviews. No number of people who will be terminated.”

Instead, Social Security just published the projected cuts of $2.6 billion. That leads Romig to believe the agency has data it isn’t releasing: “They DO have a number of program dollars saved — in fact, two numbers, one for SSDI and one for SSI. I think it stands to reason that SSA has estimated how many disability beneficiaries would be cut off and they are withholding it. I’ve never seen the estimated number of people left out of a proposed rule; it’s a vital piece of information.”

The rule is open for public comment on regulations.gov until January 31, 2020.

But for their son’s first few years of school, when Custen was working in Draper, Utah, attending the annual Individualized Education Program (IEP) meetings that laid out this plan could have threatened their job. To participate in meetings 40 miles away, “I would need to use PTO, and there would need to be space available in the schedule for me to leave,” they explained. “If someone else had already claimed time off that day before I had the chance to, then I wouldn’t be able to take the time off myself without receiving a strike for an absence, which would put my job security at risk.”

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Custen’s son receives his services in part through IDEA (the Individuals with Disabilities Education Act), which serves around 14 percent of public school students. IDEA guarantees a right to an IEP, which includes an evaluation of a student’s educational abilities and needs and provides a detailed plan for any support services, specialized instruction, or accommodations they may need due to a disability. These accommodations may include alternative assignments, permission to record a spoken lecture, large print textbooks, extended testing times, assistance with organizing a desk space, or access to speech-to-text software, among many others.

Parents can be crucial partners when it comes to selecting accommodations in an IEP, but Custen’s job was making it impossible to get a seat at the planning table. Meanwhile, Custen’s ex’s schedule allowed him to regularly attend — a disparity that led to family stress and communication gaps around their son’s education plan. Their son’s behavior was different when he was around his father than when he was around Custen, for example, in part because their ex struggled to accept that their son was neuroatypical.

“He would often go into meetings with unrealistically rose-tinted lenses on our son’s behavior and progress,” Custen explained. “He would skew his own perception of our son’s capabilities and milestones. For instance, he would do 90 percent of the work in getting him dressed while our son would do 10 percent of it (such as pulling up pants or sticking arms through sleeves once his shirt was already pulled on for him) and claim that our son was capable of dressing himself.” This led to confusion over what kind of assistance their son would actually need at school.

Custen’s frequent absences meant the services their son received were selected based solely on his behavior around his dad. “The fact that I was not present at these meetings meant that they were taking him for his word on our son’s at-home behavior,” Custen shared. In turn, “they would have to hear from me later and go through the process of editing notes and plans for the IEP. I can’t imagine that it was easy or comfortable for the team helping our son to be caught in the middle of such a back-and-forth between [me and] my ex either.”

Some parent advocates believe problems like Custen’s could be partly alleviated by a recent announcement from the Wage and Hour Division of the U.S. Department of Labor (DOL). The agency responded to a parent whose employer denied their request to take intermittent Family and Medical Leave Act (FMLA) leave to attend IEP meetings. The agency clarified that employees whose children have “serious health conditions” (those for which a patient receives either inpatient care or continuing care from a medical provider) requiring IEPs are able to take time off under the Family Medical Leave Act (FMLA) to attend IEP meetings without losing their job or continued health insurance coverage.  FMLA allows eligible employees to take up to 12 workweeks of leave in a 12-month period for serious health conditions or to care for family members.

According to the decision, parents can use FMLA leave to attend IEP meetings because they involve medical decisions, discussions of children’s health and well-being with respect to those decisions, and the provision of proper physical and psychological care. Notably, the DOL also said a child’s doctor doesn’t have to be present in order for a parent to use FMLA time to attend their IEP meeting.

Amanda Morin, an education writer/author, parent advocate, and former teacher, knows many parents simply won’t be able to take advantage of the clarified policy, especially if they are low-income. Seasonally, intermittently, or self-employed parents are rarely eligible for FMLA, which is restricted to private employers with 50 or more employees working for them within 75 miles of a central worksite. Employees are only eligible if they’ve worked for at least 1,250 hours across the 12 months prior to the leave and have worked for their current eligible employer for a full year.

“Even parents who do have FMLA may not always be able to afford the time off if it will have to be unpaid,” she explained. Overall, around 59 percent of U.S. workers were covered by FMLA as of 2012. That number may have shifted downward since then due to the influx of freelance positions and the rise of the gig economy.

In many ways, this decision looks like a major move towards greater equity in education. Family members work schedules are often intimately connected to their children’s IEP meetings. For researcher, writer, and former teacher Mireya Vela, IEPs have always been a part of her life — and her job choices. Vela’s son, now 25, began his IEP at four years old after his speech delays and other developmental issues became apparent.

Vela tailored her work schedule, and even her choice of career, around her son’s educational and medical needs. “From the time my son was six to the time he graduated high school, I only worked part time. I couldn’t work longer than that,” Vela said. “I often had 2-3 jobs at the same time. But all my jobs worked around my need to drop everything and run to the school.” What’s more, Vela consistently advocated for meetings longer than the customary school-requested 45 minutes, and attended them flanked by a support team of clinicians and advocates — which often meant some rescheduling.

A parent’s ability to take FMLA time off for an IEP meeting will also depend on their child’s exact diagnosis and necessary support services. Morin said “it may also be challenging for parents of kids who don’t have a medical diagnosis, but have an IEP, because getting documentation of the need for leave isn’t as clear-cut.” There might be cases where a child is in clear need of services to help them with a disability or developmental delay, for example, but their family is uninsured or underinsured or can’t afford to see a high-level specialist. In other cases, a student might have to go through an extended period of testing or medical assessment before they receive a final medical diagnosis. Without a documented specific diagnosis, a parent may struggle to prove their eligibility for FMLA leave.

Still, Morin calls the ability to use FMLA intermittently for IEP meetings “a step in the right direction,” especially because not all eligible parents may have known that they could use time off for this purpose. “I’m pleased that it shines a light on the fact that an IEP meeting is tied into a child’s health and well-being,” she said. “I think, for parents who have not been able to leave work to get to meetings, knowing this is available, and feeling confident enough to bring it to an HR department to use the new policy, has the potential to be really empowering and increase family-school engagement.”

An equal, engaged dynamic between schools and families is critical, says Morin, because parents often understand their children more intimately. Parents also have more knowledge about how a student might learn or interact in different settings, which could impact the frequency or types of services they may need.

The DOL’s recent announcement marks a potential step forward in terms of recognizing IEPs as crucial to children’s well-being, health, and quality of life, rather than positioning them as optional “add-ons” to a one-size-fits-all public school education. For Brim Custen, family-school engagement was indeed the driving factor in their son’s well-being and educational progress at school. Later, when Custen began working as the communications coordinator for the Utah Pride Center, their new employer’s greater flexibility allowed for much more active participation in the development of their son’s IEP, and they saw a sea change after becoming more directly involved.

Initially, Custen’s inability to attend IEP meetings forced both families and school administrators to wade through red tape as they struggled to come to a full understanding of exactly what Custen’s son could and couldn’t do. “When he would move to a new classroom with new teachers, there would be some growing pains as they adjusted to the fact that I would seldom be present in person at these meetings,” explained Custen, “and I would end up having to disagree with my ex and provide different perspective after the fact through email or phone call.”

No longer mired in confusion, the team working with Custen’s son was able to communicate more clearly and flesh out a comprehensive plan to help him pay attention and regulate his emotions both in and out of class. “Thanks to there being an IEP in place and a team of teachers and therapists who understood his needs and worked within them, I’m proud to say that my son is doing vastly better in his behavior, self-control, and retention of information in school than we had anticipated he’d be able to,” Custen shared.

Despite hazardous conditions in the days before the Camp Fire became a conflagration, Pacific Gas and Electric company elected not to take advantage of one of the most aggressive and effective tools in its wildfire prevention arsenal: De-energization, also known as a public safety power shutoff (PSPS).

According to California’s Public Utilities Commission, in 2015, the last year for which data are available, utility lines accounted for just 8 percent of fires, but they burned 150,000 acres, more than all other causes combined. Many of the state’s lethal fires have been attributed to power equipment. Utilities may opt to de-energize their lines when a lethal combination of weather factors converge: It’s hot, dry, and extremely windy.

While utilities determine when to make the call in different ways, the National Weather Service red flag warning of increased fire risk is often a factor. More than 50 percent of Northern California alone is at “elevated” or “extreme” fire risk, putting hundreds of thousands of residents in the danger zone. California’s Public Utilities Commission is deep in the heart of rulemaking around the relatively new approach to wildfire prevention as the state also explores options like burying utility lines and more aggressive vegetation management for preventing utility-associated wildfires.

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But de-energization comes at a cost. When it occurs, customers can be without power for hours or days. Utilities are supposed to provide advance notice, but some customers say that’s not happening. Instead, they complain recent Pacific Gas and Electric and Southern California Edison shutoffs have occurred with insufficient notice and been accompanied with outdated, confusing information on estimated time of power restoration, including lags in translating outage information.

This is a particular concern for customers who are electricity-dependent. In any given outage block, there may be hundreds or thousands of customers who registered with the utility to indicate they rely on medical equipment to stay healthy, and, in some cases, to stay alive.

Known as “medical baseline customers,” they may require ventilators and similar life support equipment, while others have conditions that can become uncomfortable or dangerous without medical equipment and cooling systems, or have medications that must be refrigerated. In recognition of their increased energy needs, utilities provide them with an extra allotment of energy at the base pricing tier. Other customers may have similar electricity needs despite not being enrolled in the medical baseline program, for a variety of reasons.

Utilities are supposed to be proactive about providing early and frequent notice to medical baseline customers to ensure they’re aware of the possibility of an outage. Kari Gardner, Southern California Edison’s Senior Manager of Consumer Affairs, explained that Edison, like PG&E and other utilities, has a multi-step warning process including a two-day warning that an area is being monitored, a one-day notice, and, ideally, one to four hours of notice before an area is de-energized, though rapidly-changing weather conditions can make this challenging. The utility, she said, is always working on better ways to reach customers, with a particular focus on medical baseline customers; the utility sends out door knockers for notification if they can’t get through on the phone, for example.

Jill Jones, who lives in Sonoma County near the site of 2017’s infamous Tubbs Fire, an area primarily served by Pacific Gas and Electric, is not a medical baseline customer but does have a condition called hereditary angioedema type III, which causes sudden intense swelling, including of her airways. She needs air conditioning and a low-stress life to reduce the risk of swelling episodes, and she also relies on a very expensive medication that must be refrigerated. “As soon as the air conditioner stops, the clock… when I will have an attack starts ticking fast,” she said.

Her condition was foremost on her mind when warnings of a possible shutdown started swirling in late September. Jones tried to track information about de-energization events through the PG&E website as well as social media. “They did not respond to my pleadings for them to consistently post updates. Their website and its map were either not updated and had info only from the day or two previous,” she said, noting the utility’s social media was slightly more current, but that not everyone could access it. She turned into an information conduit for those with limited computer literacy struggling for access to current information.

Lack of clarity led her to pack up and leave to stay with family outside the threatened zone, fearing that her power might be cut. “I have had to set up an emergency ‘go bag’ with a plan and network of family ready to house and come get me should we experience a Public Safety Power Shutoff. We have had to set up my parents’ RV to be ready to both run AC and safely house my medications should we lose power,” she said.

This issue isn’t just access to accurate and current information in multiple common languages about the possibility and status of a de-energization, though. The state’s information site, with language borrowed by the utilities, includes planning that is not necessarily practical or accessible for all medical baseline customers or others who rely on electricity for survival. Planning ahead for customers with medical needs is expensive, and disabled people are at a much higher risk of poverty — 26.8 percent compared to 10.3 percent for nondisabled people. In rural areas like those prone to shutoffs due to worries about vegetation on utility lines, that risk is even more extreme.

Recommendations include suggestions to buy generators or backup batteries, which are costly, and not always safe or practical in apartments and some rental single-family homes. Customers are also advised to “stay with a friend,” for those who can travel and have friends with accessible homes outside the range of the de-energization. The utilities operate respite centers with power and cooling, but they’re only open during the day.

This is something Gardner says utilities recognize when making the call for a PSPS and developing resources for medical baseline customers who may be caught up in fire prevention efforts. Utilities and the state are both working on programs to increase the affordability and practicality of emergency planning. One of the new bills Newsom signed encourages utilities to provide more support; tools such as microgrids and backup batteries can help electricity-dependent customers and their larger communities.

“What needs to happen is a genuine consideration of the risks of keeping the system on versus the risks of shutting it off,” said Melissa Kasnitz, a disability rights attorney with the Center for Accessible Technology. “Right now, utilities are only focused on one side of that equation.”

Kasnitz noted that while ventilator users and others with devices that require electricity may come to mind, there are other implications for medical baseline customers. For example, like Jones, diabetics need to keep medication in the fridge. In a country where one in four diabetics reports rationing insulin due to cost, losing a supply could be devastating.

Similarly, people relying on the Supplemental Nutrition Assistance Program could lose all their food in an outage, with no budget for buying more — and the utility isn’t liable for that loss. And, said Kasnitz, people who work low-wage jobs who miss work because their employers can’t open might have to reshuffle their finances, putting prescription medication behind food or other needs.

Those customers might not necessarily be registered as medical baseline customers, highlighting the ripple effect of these outages, though she is swift to note that wildfires are also tremendously disruptive and sometimes fatal.

The debate over de-energization pits competing public health interests against each other, and it also has stakes far beyond California’s borders. Utilities in other states may begin to consider de-energization as an option in dangerous wildfire conditions with climate change increasing hot, dry weather. Disability advocates hope that consideration includes better planning for electricity-dependent customers with limited means as California learns how to navigate its new landscape. That’s something Gardener says is on Edison’s mind: “I want our most vulnerable customers to know that we do recognize that there’s additional risks when outages occur.”

During the course of his career, Scalia has denied the science behind repetitive stress injuries, prevented UPS drivers injured on the job from having the ability to form a class to sue, and — most outrageously — insisted that an employee at Ford Motor Company should soil themselves at work rather than be allowed the privacy to work from home.

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In the Ford case, Scalia defended the company against a claim that it had failed to accommodate a person with Irritable Bowel Syndrome. The plaintiff had requested telework as a reasonable accommodation, which the company refused and countered with an offer to move the employee’s cubicle closer to the restroom.

When the plaintiff explained that simply standing up could trigger a loss of bowel control, Scalia argued that they should have taken “self-help steps such as using Depends (a product specifically designed for incontinence) and bringing a change of clothes to the workplace.” In other words, when an employee asked for support, Scalia argued that she should wear a diaper and be ready to change her pants.

This is not just a case for me. It is personal. As a person who has lived with inflammatory bowel disease for 34 years, I have requested and received the accommodations cited in this case. It’s not unusual for me to need quick access to a bathroom four, six, or eight times during a workday. On the days when that number is higher, I take advantage of telework. On days when it’s lower, I come to the office confident that my disability will not keep me from the work I love. Not because I’m forced to wear Depends — which would put me at risk for complications from inflammation or infection — but because of laws like the Americans with Disabilities Act that protect my right to accommodations that work for me.

Scalia’s nomination has the potential to set back disability employment policy by decades. The Department of Labor has a critical role in driving policy on disability employment, helping make the workplace safer and more accessible, and helping move the needle away from subminimum wage employment.

It might be easy to dismiss this administration’s nomination of Scalia as just one more dangerous appointment competing for our attention. That’s not what I see here. What I see is a nominee who endangers every worker’s right to reasonable accommodations. Not just the 3 million Americans who live with bowel disease, but the more than 60 million Americans with disabilities who depend on the ADA to protect them from discrimination by employers.

However, President Trump is not alone in targeting people with mental illness in the aftermath of gun violence instead of focusing on access to guns. New York Gov. Andrew Cuomo and Texas Sen. Ted Cruz, among others, have done the same. If they’re successful, it will be another hard hit against marginalized communities during an administration when they are already under attack.

The American legal landscape is a complex web of laws that subject mentally ill people and those experiencing acute crisis or suicidality to surveillance and restrictions of their rights, which most notably includes the right of states to involuntarily commit a person with mental illness or to mandate outpatient treatment. Undergirding this legal framework is the presumption that people with mental illness are prone to violence (whether against themselves or others).

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This is sanism: The system of institutionalized oppression that systematically disadvantages people perceived or determined to be mentally ill, while granting privileges to those considered sane.

The legal link between violence and mental illness is so strong that the United States often uses institutionalization as part of the broader carceral system. Among the most glaring examples of this are the insanity defense, people who are deemed incompetent to stand trial, and sex offenders who are confined to mental institutions even after the completion of their criminal sentence.

Technically, people charged under these laws are not sent to prison. However, institutionalization functions as a form of medical incarceration; patients are not free to come and go, and are often confined in hospitals for a longer period than they would have been confined to jail or prison. In fact, the population of forensic patients in state psychiatric hospitals has grown so rapidly that many state institutions are at or beyond capacity, with some patients held for decades or even indefinitely.

The specific legal criteria for involuntary civil commitment vary across states, but most states rely on the dangerousness criterion. In theory, it assesses if a mentally ill person poses a threat of danger to themselves or others to determine whether to initiate civil commitment proceedings. However, states generally do not distinguish between the danger posed to oneself and the danger posed to others in determining the appropriate interventions. The law affirms that states, pursuant to their parens patriae power, or the authority to act as a guardian for those unable to act on their own behalf, have a substantial interest in subjecting people with mental illness to involuntary commitment to ensure their safety or their community’s safety.

So even when no crime has been committed, people can be medically incarcerated. In a country that guarantees a constitutional right to liberty and due process, that poses a serious problem.

Trump’s call for increased institutionalization, therefore, bears a striking similarity to the cruelty of his other policies: It capitalizes on widespread anxiety about community safety in order to justify expanding carceral control of “deviant” groups. People of color and other historically marginalized populations will bear the brunt of any such expansion. People of color are more likely to be found incompetent to stand trial, and Black people are three to four times more likely than white people to be diagnosed with psychotic disorders. Black and Native people are disproportionately impacted by institutionalization and are more likely to be mandated to receive involuntary outpatient treatment.

Much like the proposal the Trump administration is weighing today, previous policies meant to reduce gun violence ultimately increased surveillance and criminalization of people with psychiatric disabilities.  For example, 43 states currently require or authorize that people flagged by the state due to certain mental-health adjudications have their names reported to the FBI’s National Instant Criminal Background Check System (NICS). Four more states require such collection in an in-state database, each of which place people who have been involuntarily committed on lists alongside those convicted of violent crimes to bar them from purchasing firearms. Following the shootings at Virginia Tech, mental health related reporting to NICS spiked by 700 percent in just under seven years.

This becomes increasingly important as a focus on suicide becomes a larger target in gun violence prevention. While politicians have previously been met with skepticism for pinning mass shootings on mental illness, they have found support when focusing on the danger that people with mental illness are presumed to pose to themselves. This allows politicians to dodge the issues underpinning mass gun violence, instead targeting a population of people with much less political capital (people with mental illness) rather than the main perpetrators of mass shootings (straight white men). In that sense, they are leveraging sanism to protect white supremacist patriarchy.

As a result, the focus on suicidality is likely to increase the number of people who are institutionalized, without decreasing the number of mass shootings.

The American mental health system is violent. People with mental illness, particularly people of color with mental illness, are increasingly subject to punitive coercive treatment instead of community-based models for healing and care. The national fixation on mental illness which inevitably follows mass shootings is harmful not only because it does nothing to curb gun violence, but because it is a pretext for entrenching and expanding oppression.

Each time gun violence and mental illness are discussed together, we ultimately reinforce the discriminatory assumptions which animate our laws and justify dehumanizing treatment and oppression of psychiatrically disabled people.

When McGary lived in Portland, Oregon, a city inspector decided he had too much debris in his yard and cited his home as a “nuisance” property under the city’s local nuisance ordinance. McGary, who was living with AIDS, asked volunteers from a local AIDS project to help. But before they could clear the yard to the city’s satisfaction, McGary was hospitalized with AIDS-related complications. His patient advocate informed the city that McGary was an individual with a disability and requested more time, but Portland refused. The city issued a warrant for violating the city’s chronic nuisance ordinance, and charged him $1,818.83 for the cost of clean-up. When McGary couldn’t pay, Portland claimed rights to his home — and forced McGary sell it to satisfy his debt to the city.

McGary is just one of many people with disabilities who lose their homes in the estimated 2,000 municipalities across the country with “chronic nuisance ordinances” (also called “CNOs” or “crime-free ordinances”), local laws that punish residents for behaviors the city decides are “nuisances.” Most encourage or even require landlords to evict tenants whose homes are declared a nuisance — and impose fines and fees on landlords if they don’t evict and the infractions continue. In some cases, like McGary’s, cities fine homeowners or place “liens” (a debt attached to a property) to “nuisance” properties, effectively forcing a cash-strapped household to sell their home.

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Definitions of a nuisance vary widely, but they can include arrests occurring near the property; failing to mow your lawn or maintain your yard; or even calling 911 “excessively.” Broad definitions of “nuisance” behavior can sweep up behavior that simply reflects a tenant’s disability, such as being unable to clean your yard or calling 911 for medical aid. In communities around the country that have utterly failed to fund social workers, substance abuse treatment, or other resources for people to turn to in a crisis, calling 911 may be or seem like the only option — and in cities with chronic nuisance ordinances, they might be evicted for it.

When it comes to calling 911, the threshold number of “excessive” calls may be quite low — for example, in Bedford, Ohio, a property can be declared a “nuisance” after just two 911 calls. After a tenant called 911 twice in three months seeking help because her boyfriend was suicidal, Bedford declared her home a nuisance and fined her landlord. Her landlord began eviction proceedings shortly after. In another case, in Baraboo, Wisconsin, a mother called the police because her daughter was harming herself and posting suicidal comments on social media; police connected her daughter to a crisis counselor, but cited their home as a nuisance

We spent the past year analyzing police reports and call logs from Midwestern municipalities that use chronic nuisance ordinances. In city after city, we saw these ordinances had a severe impact on residents with disabilities, especially residents who called 911 for medical help because of a mental health crisis, substance use disorder, or a chronic illness. When a woman in Neenah, Wisconsin discovered that her boyfriend had overdosed on heroin, she called 911 in time for paramedics to administer naloxone, a medication that can reverse opioid overdoses, and save his life. But after paramedics reversed the overdose, police charged her boyfriend — who had been in treatment for substance use disorder — with possession. Because of the overdose and the possession charge, the city told the landlord the home was about to be declared a nuisance; the landlord issued a 30-day eviction notice against the woman and her boyfriend.

These cases aren’t isolated. According to a lawsuit challenging a nuisance ordinance in Maplewood, Missouri, at least 25 percent of enforcement actions in the town were related to “obvious manifestations” of disability. For example, Maplewood declared a home a nuisance after a resident with PTSD and bipolar disorder called a crisis hotline and volunteers sent local police to her home. Ohio, which has the second highest rate of opioid-related deaths in the country, is another example. Police and paramedics are trained to carry and administer naloxone to combat a crisis that’s killing more people than the AIDS epidemic at its peak. But a study of four towns in Ohio found that, in every single one, more than one in five properties that were declared nuisances were marked because of 911 calls for help during an overdose.

These laws are bad news for other marginalized tenants, too. One study in Milwaukee found that nearly a third of nuisance enforcement actions stem from domestic violence, most often against Black women. And tenants of color are impacted most: the New York Civil Liberties Union found that Rochester, New York, issued nearly five times as many nuisance enforcement actions in areas of the city with the highest concentration of people of color as it did in the whitest parts of town.

The Americans with Disabilities Act bans state and local governments from denying people with disabilities the benefits of public services, programs, or activities. Courts have read the ADA’s sweeping non-discrimination promise to cover “anything a public entity does.” By punishing people for calling 911 during a mental health crisis or for being unable to clean their front yard — in other words, punishing them for a disability — chronic nuisance ordinances violate the ADA’s promise of eliminating state-sponsored discrimination. By attaching consequences like fines and eviction to 911 calls, towns and cities deter people with disabilities from accessing police and medical services (even though people with disabilities are paying for those services with their tax dollars) and again risk violating the ADA.

McGary, the Portland resident living with AIDS who lost his home because of a chronic nuisance ordinance, sued the city arguing just that — and a federal court of appeals agreed. Portland’s nuisance ordinance applied to everyone, not just people with disabilities. But when a law burdens people with disabilities more harshly than abled people, the ADA requires that cities and states accommodate those differences, including by making exceptions to generally applicable policies. The federal court found nuisance ordinances such as Portland’s would violate the ADA if the city imposed them neutrally, without making accommodations for the unique burdens they placed on people with disabilities. They can also violate the Fair Housing Act, which prohibits municipalities from adopting policies that discriminate on the basis of race, sex, or disability.

Portland won’t be the last city in court over its nuisance ordinance. This April, the American Civil Liberties Union sued Bedford, Ohio, arguing the city’s chronic nuisance ordinance discriminates against people of color, people with disabilities, and domestic violence survivors. New York’s state legislature just passed a law to bar cities from considering 911 calls as nuisances, largely because of nuisance ordinances’ outsize impact on survivors and people with disabilities.

Ultimately, repealing these ordinances would be a step towards ensuring that people with disabilities and other marginalized tenants have access to stable housing in their communities. Towns and cities should take chronic nuisance ordinances off the books  — and if they don’t, civil rights lawyers might make sure they don’t have a choice.

Editor’s note: All names have been changed for privacy reasons.

Like nearly 20 percent of American college students, Landre is disabled. And because Landre has spinal muscular atrophy type 2 and uses a wheelchair, her success is possible in part due to Medicaid-funded personal care assistance. The hours of personal care she receives at home allow Landre to live and study independently, while attendants help her complete crucial daily tasks related to hygiene, eating, and safety. But just a few weeks ago, her insurance company’s decision to cut her care hours from 112 hours per week to 70 nearly brought her college career to an end.

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Her insurer’s decision to reduce her access to in-home aide care is just one symptom of an underlying problem related to recent slashes to Medicaid funding. “New Jersey, like a lot of states, has tried to cut costs in their Medicaid program by contracting insurance companies called managed care organizations [MCOs], to manage it. It’s a weird way of privatizing Medicaid,” Landre explained. Some states contract with MCOs, made up of groups of health care providers, clinics, and organizations, to provide Medicaid services for a set amount per member each month.

This setup means MCOs are free in some cases to make cost-cutting decisions for profit, rather than basing decisions on actual assessments of medical needs and quality of life. Cuts affect marginalized populations like seniors and disabled people who need long-term care disproportionately, and often result in outdated policies that harm disabled people most. Almost 3 million seniors and disabled individuals rely on Medicaid for in-home personal care services that allow them to avoid institutionalization in a nursing home or other facility. “The incentives here are for them to keep cutting people’s care down, and there are very few consequences for that,” said Landre.

In the wake of a flurry of media attention, the New Jersey Department of Human Services reversed its decision, reaching a new agreement with Landre to reinstate her former care plan. But Landre and other disabled college students say it shouldn’t take public pressure on the part of individual advocates to address a much bigger underlying problem. “While this agreement will fix my situation, it does nothing to help thousands of other disabled New Jerseyans who continue to suffer due to discriminatory Medicaid policies and the predatory behavior of their insurance companies,” she wrote on Twitter.

Other students in Landre’s position have had to mount similar nationwide campaigns. From launching crowdfunding efforts and navigating complex bureaucratic systems for months at a time to spending hours publicizing their messages on social media, in press conferences, and on media outlets, disabled students often bear the burden of serving as both tireless advocates and public relations specialists just to attend college.

17-year-old Darcy Trinco, for example, who also has spinal muscular atrophy type 2, has faced many of the same obstacles in her path to a pre-med curriculum at Johns Hopkins University in the fall. Her current allotment of 30 hours of personal care services per week won’t be enough when she’s living independently. She and her family have been wading through a sea of red tape and uncertainty since she was first admitted.

Today’s stories of the roadblocks that often await disabled college students as they try to access educational opportunities are eerily similar to those faced by activist Nick Dupree (who sadly died in 2017) back in 2003. A quadriplegic and writing student at Spring Hill College, Dupree used in-home nursing care services through Medicaid while attending school in order to live independently. Threatened with losing those services upon turning 21, Dupree launched a campaign called “Nick’s Crusade” to fight for his right to remain in college and to avoid having to enter a nursing home facility after his 21st birthday.

Recently trending hashtags like #WhyDisabledPeopleDropOut are a sobering reminder that the obstacles facing disabled college students are systemic rather than isolated — and that not much has changed in the 16 years since Nick’s Crusade. “It’s so hard for disabled people to fight [this kind of segregation] in most cases,” Landre said, noting that, with family support and knowledge of the law, she’s actually “one of the lucky ones.” Many disabled students don’t have access to the same legal knowledge, family supports, and widespread publicity as the ones who most often make the news. Many disabled students don’t know that they even have the right to “fight the system,” much less the resources to do so.

Many disabled college students who drop out — which happens at around twice the rate of nondisabled students — cite trouble accessing accommodations and adequate personal care hours as significant factors in their decision to leave school. That’s why changes to state Medicaid policies through means like New Jersey’s proposed bill A4130, which would increase reimbursable personal care hours for working adults with disabilities, and broader civil rights legislation like the proposed Disability Integration Act could be so instrumental, Landre says, in leveling the playing ground for all students.

Landre knew the problem was deeper than her individual access to education, even after state officials reached out to her to sign a new agreement that would allow her to return to school. She isn’t about to stop fighting for her right, and the right of other disabled college students, to integrated education.

“So many other people just get a letter in the mail with an agency decision and don’t even know they can appeal. They have to go, ‘Well, now I have to get divorced, or move back in with my parents, or quit my job.’” She concluded, “It’s long past time for things to change” — both in terms of Medicaid’s outdated policies and in terms of ideologies that keep disabled people isolated, institutionalized, and excluded.

This April marked the 20^th anniversary of the Columbine school shooting. In the weeks following the anniversary, three deaths and numerous injuries were caused by two shootings on school campuses. Despite whatever fervor Columbine may have stirred 20 years ago to address school shootings, they have become a common part of the U.S. news cycle and school shooting drills a regular part of a student’s education. However, no matter how common these events are, safety drills and strategy have not adequately developed inclusive safety measures for students with disabilities.

This is not a trivial problem: 14 percent of students have a disability.

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The current approach regarding active shooter events is the “run, hide, fight” strategy, the response recommended by the Department of Homeland Security, which calls for running away when possible, hiding somewhere safe when you can’t run, and fighting the shooter if running or hiding are not options. For students with disabilities who may not be able to run, employment of the “hide” aspect of the “run, hide, fight” strategy often calls for waiting in areas such as libraries, bathrooms, and classrooms for response personnel to assist them — even if these areas aren’t very accessible or safe. The fight strategy is the last option, one that no parent or teacher wants a student, disabled or otherwise, to have to do, and a strategy that has left two young students dead in the last several weeks. However, if schools have not provided sufficient options for students to respond, they may be left with few other choices than to charge or thrown items at an attacker.

Plus, tools like door barricades and lockdown plans designed to keep children safe often ignore the needs of students with disabilities, who in addition to mobility disabilities may have adverse reactions to alarms that overwhelm senses, difficulty processing instructions, or an inability to remain still or quiet.

Using a classroom as a refuge area was the solution Katie’s school decided to use when she was in fifth grade. “I just (in theory) had to wait in a burning building until someone came to get me. Even at 10 years old, I knew this was a horrible plan and I was not a fan,” she said.

While Katie was raised in Michigan, these issues are national. A settlement in a Newark, New Jersey, high school district was reached in 2017 after it left at least one disabled student in the school when an unplanned alarm went off.  The school “did not have policies for evacuating students with disabilities,” according to federal officials. More than 20 years ago, the City of Alexandria, Virginia, school board was sued twice regarding evacuation and school safety of students. Despite laws and litigation establishing accessibility requirements that go back decades, much has remained the same in evacuation plans for students with disabilities.

When it comes to students with disabilities, organizations such as Safe and Sound Schools and the ALICE Training Institute recommend the use of Independent Emergency and Lockdown Plans, or IELPs. These protocols hook into Individualized Educational Plans (IEPs), a federal requirement for special education students, which are detailed and routinely updated plans to accommodate students with disabilities; or a student’s 504 Plan, which ensures access to certain accommodations, such as extra time on tests.

While IELPs can be a great way to address a child’s specific needs, learn the problem areas of the school, and connect with disabled students and their parents, it is a dangerous disservice to everyone on a school campus to relegate inclusive solutions to these problems to just one student and their specific IEP or 504 team. It does not seem feasible that a school administration could efficiently respond to the individual IELPs of each student and keep all students safe in the event of a real emergency.

Relying on individual plans also represents a missed opportunity for universal design and inclusion, which could benefit the campus as a whole. Universal design of safety plans would produce plans that are created with the flexibility and intention of being used by the largest number of students possible, based on a recognition of varied needs, rather than amended later for individual students as needed.  Additionally, IEPs and 504 Plans are a federal requirement that does not apply equally to private schools, which do not have a requirement to provide IEPs to students with disabilities.

In 2019, schools should be beyond a “separate but equal” approach to students with disabilities. Disabled students spend on average more than 60 percent of their time in a general classroom. It is dangerous and lazy not to integrate identified safety needs into school response plans, which should be accessible and account for the many needs of all children attending the school. For instance, investments in tools like noise canceling headphones, or cue cards for the classroom, may help students handle loud noises and follow the steps in a lockdown procedure.

The requirement for inclusion in the classroom and in emergency preparedness is not just fanciful suggestion, but the law. The Americans with Disabilities Act, passed in 1990, applies to places open to the public, governments, and schools. A recent ADA-based lawsuit against the New Rochelle, New York, school district, which failed to evacuate two students during a fire and did not include students using mobility aids in drills, ended in a payment of $26 million dollars to a student who uses a wheelchair.

With the innovation that has taken place in the last several decades, people like Katie often wonder why there haven’t been improvements to school emergency plans and why students continue to face dangers due to inaccessibility nearly 30 years after the ADA and hundreds of school shootings later.  While school safety has turned into a billion dollar industry, efforts such as metal detectors or adding police are not creating safer school campuses. Funds could be used for more comprehensive alarm systems, evacuation chairs, additional training and drills, and emergency elevator systems that will allow all students to be less passive in an emergency situation.

Inclusion is planning for everyone from the beginning. The onus for creating an effective response to an active shooter should not reside with the student, teachers, or parents, but with school systems using the knowledge and input of those parties. IELPs are a conversation we need to be having for K-12 students with disabilities, but they are only a beginning step for making our schools truly accessible and as safe as possible for anyone that may be on campus in an emergency. School districts have spent far too long avoiding true integration in school emergency plans, and it puts students’ lives at risk.

An Instagram story from a low-pain day or a Facebook post with an old photo might be used against an applicant for disability benefits, a change from the status quo where the agency only looks at social media in cases of suspected fraud. Thanks to a New York Times story suggesting a tiny line item in the agency’s 2019 fiscal year budget overview will turn into a real policy, the disability community is very worried.

All this for an agency with a “fraud incidence rate that is a fraction of one percent.”

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The proposed expansion of social media monitoring for the nearly 20 million Social Security Disability Insurance and Supplemental Security Income recipients would have several negative effects, among them that disability activists who organize and build community online may be hesitant to do so. It will also feed directly into myths about Social Security fraud that have been wildly overstated in media coverage, such as a 2017 Washington Post series or a 2013 NPR feature package that made it seem as though “undeserving” people were lining up for disability benefits. (The average monthly benefits are under $1,300; being on disability is hardly a profitable endeavor.)

Proposals like this one underscore the common belief that everyone applying for disability is fake until proven otherwise. “I hate the assumption that everyone’s lying just because they need help,” said Rachel Graves, a member of the chronic illness community who receives disability and private insurance coverage, and who is already very cautious about her online presence. Graves is well aware that social media is used to police disabled people online by the government and insurance companies, as well as the general public, who are all seeking out disabled people who don’t “look sick.”

In response to the news, Mila Johns, who has Ehlers-Danlos Syndrome, a connective tissue disorder, deleted her Facebook account and plans to scale back on Twitter: “It seemed like too big of a risk to take by continuing to engage in social media. Because we don’t know how it’s going to be used.” Johns relies on communities found through sites like Facebook and Twitter to connect with people who share her diagnosis. “[Social media is] a lifeline for so many people,” she said, but she’s preparing an application for disability benefits, and she’s worried about what examiners might find, and judge.

The internet is valuable for outreach and advocacy, but also activism. Online organizers have used social media to fight attacks on the Affordable Care Act, organize in defense of the Americans with Disabilities Act, and engage in solidarity actions with other marginalized communities. Disabled advocates such as Imani Barbarin, creator of hashtags such as #AbledsAreWeird and #ThingsDisabledPeopleKnow, and Alice Wong, founder of the Disability Visibility Project and one of the co-partners of #CripTheVote, rely on social media for their work.

Images of disabled protesters went viral in 2017 during the fight to preserve the Affordable Care Act. Those same protesters now get to worry about whether those pictures will be used against them to deny or revoke disability benefits; if you’re well enough to occupy the halls of Congress, surely you’re not “really disabled.”

The agency already has an entire trained investigative division that focuses on preventing fraud before it even happens, in addition to following up on complaints about current beneficiaries. It also uses predictive analytics software to flag suspicious activity among both applicants for and current recipients of disability benefits. (Like other uses of predictive algorithms, this has dangerous implications, requiring applicants and recipients to submit to the surveillance state’s collection and use of their data. Algorithmic bias is also a significant concern.)

Now, in addition, the new proposal would allow thousands of front-line “disability adjudicators” all across the country to conduct their own fraud investigations using social media data. These are the staff charged with determining whether a claimant meets the agency’s stringent criteria for disability benefits.

On average, they are not very accurate.

In 2016, disability adjudicators approved 33 percent of initial disability applications and denied the other 67 percent. Claimants whose applications are denied have the right to appeal and have their case heard by an administrative law judge. After waiting one to two years to have their appeals decided, 46 percent of claimants are ultimately found to be disabled by Social Security.

In other words, nearly half of the people whom disability adjudicators rule as not disabled are actually determined to be disabled when they have their day before a judge.

In this climate, it’s easy to understand why disabled people might be afraid, and the consequences of curtailing social media engagement can be immediate and painful. “It is so isolating being really sick, especially when you have something unusual enough that you don’t know anyone else who has it. To find someone like you can make you feel less lonely,” said Graves.

The proposal also aligns with a long history of claiming that programs like SSDI and SSI are rife with “fraud.” For those concerned about fraudulent applications, the Social Security Administration maintains a fraud hotline and encourages not only workers, but also law enforcement and members of the general public, to report suspected disability fraud, in a “see something, say something” approach that encourages people to inform on each other.

This is the dangerous crux of the proposal: It will have a silencing effect on disability advocates at a time when they have won several high-profile victories with the assistance of online organizing, such as helping to prevent the repeal of the Affordable Care Act. Expanding the use of social media in disability determinations could become punitive in nature, with poorly-trained adjudicators dealing with large caseloads making snap judgments about applicants, particularly those with outspoken political leanings. Disability activists who don’t “look disabled” or have variable experiences of disability, such as part-time wheelchair users, could pay a high price for leading public lives.

The proposal can be operationalized administratively, without Congressional action, though Sens. Sherrod Brown (D-OH) and Bob Casey (D-PA) have expressed concerns about it. But it will make the internet less safe — especially for people like Johns who are primarily or entirely homebound and use it as a vital tool for participating in society. And it will make organizing harder for a fractured community that’s currently relying on the internet to help with the fight against dangerous, disablist policy proposals on the state and federal level.

One of the most exciting elements of the bill is its explicit callouts of disability, acknowledging the fact that 17 percent of children in America have disabilities and need child care too — but can face barriers to inclusion.

The United States is facing a dual problem of scarcity and unaffordability when it comes to child care. 83 percent of parents with children under age five report difficulty locating affordable child care of sufficient quality in their area. Challenges with paying for child care or finding a suitable provider are pulling parents out of the workforce or leading some people to reconsider parenting altogether.

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Common threads in Warren’s Universal Child Care and Murray and Scott’s Early Learning Act and the Child Care for Working Families Act include increasing compensation for child care providers; making child care free or low-cost, depending on income; and investing in quality improvements across the board. But Murray and Scott’s bill is comprehensive and inclusive: It extends services beyond child care centers and into homes and communities, addresses care from birth through age 13 for all children and up to age 18 for disabled children, and invests in full-day, full-year programming to accommodate parents with varying schedules and those who need child care services in the summer.

The disability inclusion in Murray and Scott’s bill — which includes funding for activities such as making sure facilities getting government money are accessible and providing training to staff so they can better serve disabled kids and their parents — builds on the work of the Americans with Disabilities Act and the Individuals with Disabilities Education Act. It positions such funding as a routine part of meeting quality standards — something society tends to view as “special treatment” or a “burden.” Everyone in America deserves access to child care that meets the needs of their children, and that includes disabled children, who can be excluded by inaccessible facilities, poorly trained staff, and other barriers.

As long as child care is under discussion, though, it is worth addressing the fact that disability isn’t an issue limited to children and while these bills are an excellent start, we should also be looking to the future. Disabled children grow up and build families of their own ­— 6.2 percent of parents are disabled, and disability is more common in black and brown parents — and those families, in turn, will need access to child care. Sometimes that means care for disabled children of disabled adults, and sometimes it’s care for nondisabled children of disabled adults.

“You really need [child care providers] to be on your team,” explained Dr. Kara Ayers, Associate Director at the University of Cincinnati Center for Excellence in Developmental Disabilities. Ayers is the co-founder of the Disabled Parenting Project, which studies the experiences of parents with disabilities. As part of her research, she said she sees issues like inaccessible restrooms and “just one step” entrances — doorways where a single step is all that lies between wheelchair users and entry — are common at the facilities she visits.

Mandated reporters, people legally required to report possible abuse and neglect to the authorities, may have limited experience with disabled parents. Attitudes about disability may lead mandated reporters to be concerned about disabled parents’ capability. This is an issue with doctors, social workers, and teachers, and Dr. Ayers has found that it can appear in child care as well, an issue that raises personal concerns. “If I come in and these people are weirded out,” Ayers added, “one person could decide my daughter is not safe with me and one call could start that process.”

Ayers speaks to a looming worry in the disability community: In every state, it is legal to weigh parental disability when making determinations about whether to remove a child from a home, on the argument that the parent must be “unfit.” According to a 2012 National Council on Disability study, removal rates climb as high as 80 percent in cases of intellectually disabled or mentally ill parents involved in custody fights.

Disabled parents, said Ayers, worry about admitting that they need help or having to explain that services and supports are not a good fit for them, and that hooks directly into the child care conversation — if disabled people are nervous about communicating their needs, it’s challenging to make necessary recommendations.

Comprehensive access to child care, whether accomplished legislatively or through rulemaking, must be inclusive of disabled parents. For example, funds for increasing accessibility could also be used for continuing education classes to familiarize child care providers with the disability community. For disabled parents, adaptive parenting classes –  which teach people how to navigate parenting with a disability with tips on topics like handling a baby while using a wheelchair and using braille-embossed flashcards to teach sighted children to read – could be made more readily available for expecting or newly-disabled parents through expanded funding.

Likewise, parenting equipment should be made more readily available and affordable through existing systems that already connect disabled people with adaptive tools that help them lead independent lives, such as independent living centers, community programs for new parents of all ability levels, Medicaid, and occupational therapy programs.

The United States should also consider what constitutes “activities of daily living,” the tasks that personal assistants can provide for their clients, currently defined by the Centers for Medicare and Medicaid Services using a model followed by many private insurance providers. The agency’s current definition includes things such as toileting, preparing meals, cleaning, and a wide range of other activities — but most parents would argue they should include parenting, too.

A government-funded personal care assistant “cannot do anything for child care,” said Keith Jones, president of Soul Touchin’ experiences, a community empowerment and policy advocacy group. Jones learned to change diapers with his feet as a new parent worried about being deemed unfit, and commented that it’s ludicrous to ask a personal assistant to “just ignore” a child who clearly needs attention.

As it stands now, Ayers explained, aides may not be allowed to help disabled parents, depending on the terms of their contract. If a baby is crying for attention, they can’t pick them up for a cuddle. If a parent needs help getting a child into a high chair for a meal, they can’t ask their aide for an assist. Explicitly including parenting as an ADL, says Ayers, could help disabled parents and kids alike — and it’s possible to have safeguards for those worried about parents abusing their aides as child care providers.  A regulatory change initiated by CMS could be the most effective way to address this shortcoming.

The growing understanding that child care must be a part of progressive movements is heartening to see, and it’s encouraging that lawmakers like Murray and Scott are exploring disability issues as they develop new policy. Including disability from the start in ambitious proposals like these makes it easier to build on them, creating more equity and justice for the disability community.

This means the estimated 400,000 people with disabilities who are paid an average of $2.15 an hour will slowly gain access to jobs that pay the full minimum wage. That’s a big deal, especially to people like George, who used to work in a sheltered workshop run by Melwood, the company where Cari serves as president and CEO.

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George used to get nervous at work exactly twice a year. He’d held the same job providing cleaning services at the U.S. Department of Housing and Urban Development since 2008, but since Melwood was a sheltered workshop, George could be paid less than the minimum wage. The only way for him to avoid that was to test well at time trials held every six months. If he completed his work quickly enough, he was paid at a fixed rate. If he was too slow, he’d be paid a subminimum wage.

Today, we recognize that type of testing as cruel. But Melwood was established in 1963 by families who wanted to provide their children with developmental disabilities with opportunities to gain skills, have a vocation, and earn a wage. At the time, this was considered progressive — many people with disabilities ended up warehoused in institutions, and these families simply wanted to be able to keep them at home. But as disability policy has evolved, disabled people have been able to demand more — including access to jobs that pay well enough that workers can support themselves. Society changed, and programs like Melwood had to change with it.

In 2016, Melwood got on board. It relinquished the 14(c) certificate that classified it as a sheltered workshop and transitioned to paying all of its employees with disabilities competitive wages in integrated settings.

There were supports in place to make it work: The University Centers on Disability, Parent Training and Information Centers, and Protection and Advocacy Network all provide supports and services to help people move to integrated employment. Oregon and other states have demonstrated the ability for disabled workers to achieve successful outcomes transitioning to competitive integrated employment when state Vocational Rehabilitation Agencies and Intellectual/Developmental Disability Services work together.

In 2019, people with disabilities should not be facing futures with segregation and subminimum wages. They should be allowed to reach their full potential in a competitive integrated environment. They should earn a fair day’s wage for a fair day’s work.

Correction: This piece was updated to remove one of the original authors.

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In 2001, three intellectually disabled D.C. residents brought suit against the city in Doe ex rel. Tarlow v. D.C, after they were subjected to at least three involuntary procedures: two abortions and one elective eye surgery. Ultimately, the district court agreed that these women’s due process rights had been violated and that “constitutionally adequate procedures” had not been followed. The District Court ruled for the plaintiffs and held that D.C.  must make “documented reasonable efforts to communicate” with patients and if unsuccessful, the government had to take into account the “totality of circumstances” before proceeding to ensure any decision is in the best interest of the patient. This decision codified patients’ right to self-determination, and struck down the practice of elective surgeries without consent from the patients at stake.

On appeal, Judge Kavanaugh vacated the District Court’s injunction, arguing that “accepting the wishes of patients who lack, and have always lacked the mental capacity to make medical decisions does not make logical sense.” That stands in contrast to even the most conservative interpretations of the laws that existed at the time, which required two separate health professionals to determine whether a patient had the capacity to make medical decisions before every procedure. The lifetime pass Kavanaugh seems to be arguing for, which would allow doctors to perform any procedures they wanted on a person who was once ruled unfit, does not exist.

One hundred years ago, Kavanaugh’s ruling would have been at home on the Supreme Court. In the 1920’s, in the famous 8-1 ruling of Buck v. Bell, the Supreme Court found a Virginia statute that allowed for the sexual sterilization of a third generation, “feebleminded” women was constitutional because “three generations of imbeciles are enough.”

For context, when the Supreme Court made that ruling, John Scopes had recently been put on trial for teaching evolution in public schools. Penicillin hadn’t been invented. It was still illegal in most states to marry someone of a different race. There was no such thing as a chocolate chip cookie, Scotch tape, or the Golden Gate Bridge. We didn’t know Pluto existed.

We’ve made progress since then. Twenty-eight years ago, the Americans with Disabilities Act granted people with disabilities access to society. The Individuals with Disabilities Education Act expanded the right to an education 43 years ago, and the Olmstead v. L.C. decision gave disabled people the right to live in their communities 19 years ago. All that will be meaningless the moment Kavanaugh is given a seat on the Supreme Court that allows him to rule that disabled Americans are not capable of deciding what’s best for them. It’s not hard to imagine that happening. He could rule that it’s okay for teachers to use seclusion and restraint because they know what’s best for the treatment of disabled children in school. He could say that community living isn’t the best option for someone successfully living in a home of their own because that’s what the nursing home lobby says.

As both Democrats and Republicans in the Senate gear up for what is likely to be a long hearing process, the 57 million Americans with disabilities are bracing themselves for the negative consequences of Judge Kavanaugh’s appointment. If that happens, the disability community’s history of activism in all forms—from their work to preserve the ACA, to fighting to end the use of electric shock therapy on children, to pushing for a fair day’s pay for a fair day’s work—shows that when it’s most needed, the moral arc of the universe can be bent into a ramp to achieve justice.

I don’t remember the first time that I saw “ The Wizard of Oz”. I know there was a period of time before we owned it on VHS, because I remember what a big deal it was for my family the first time it went on sale. Both of my parents were also little. My mom ran a Disabled Students Center at a Community College and my dad served on the board of a Center for Independent Living, so disability issues were a constant topic of conversation around the dinner table (and in the car, and pretty much everywhere).  My mom and dad felt very strongly that it was important for me to grow up seeing positive images of people like us in the media, to offer an alternative to teasing and bullying that we were subjected to out in public. The film sat in a plastic vertical towers of about a dozen VHS tapes, along with those big plastic-encased Disney films, “Transformers,” “Jem and the Holograms,” “Willow,” and “Time Bandits.”  That was my library of cinematic masterpieces, designed to keep me away from my dad’s collection of Mel Brooks films.

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Growing up in a family of Little People (LPs), this was totally normal. Those films weren’t the “little people” movies, they were just movies in the typical rotation. But, for some folks with dwarfism who are the only people like them in their families, “The Wizard of Oz” was the first time that they had ever seen themselves anywhere. That was how my parents grew up. They were the only Little People in their families: my mom in California as number 5 of 8, my dad in Alabama as a twin in a family of four children (his sister is Average Height). As kids, they went decades without seeing their bodies reflected anywhere, except in a 1939 MGM film.

It is impossible to disconnect “The Wizard of Oz” from its legacy as it relates to the representation of people with disabilities, and specifically LPs in Hollywood. No film before or since has cast so many disabled actors—at least 124. It cemented a relationship between the dwarfism community and Hollywood. LPs as a community can complain about the lack of quality roles in the media—for every Tyrion Lannister there’s the third elf on the right in a home improvement ad during the Christmas season—but they cannot complain about the lack of roles writ large. It wasn’t until recently that we started seeing average height actors “made short” by computer-generated imagery, instead of hiring LP actors for films like “Tiptoes” or “Snow White and the Huntsman.”

That legacy is still complicated. The Munchkins are a fictional people, but far too often that word is used as a derogatory term to describe actual Little People. The characters are entirely white, objectified, and don’t get any development. But at least they existed. They had a community and a culture, onscreen and off, that was the first of its kind. Imagine showing up at MGM because of a casting call you heard about in some corner of small town America, and walking into a set in Los Angeles where there are hundreds of people at your eye level. Not having to ask people to reach things for you, not having to struggle to hear a conversation going on over your head, not having to explain why it was inappropriate to pat you on the head. Walking places with people who walk the same speed as you, talking to people who understand what it’s like to be teased, taunted, or abused for the very same difference that you have. It was such an intense experience that at the end of filming many of the LPs who played Munchkins decided to stay and settle in the Los Angeles area. In the time spent filming the movie, they met significant others onset and fell in love.  Many had families and stayed in Hollywood for work. It was the beginning of the development of a community of multi-generational LP families.

Several years later, actor Billy Barty, Texas Instruments engineer Lee Kitchens, Anna Dixon, and several other little people formed Little People of America. Jerry Maren was one of the first members. Because of the Wizard of Oz and the attention paid to the film, the formation of LPA became news, and Ed Sullivan had Billy Barty on his show to talk about the first annual conference. My maternal grandfather Jesse happened to see that episode, and for the first time he saw an adult with a similar condition to the smiling freckled red-headed daughter he had at home. It gave him a sense that her future would, in fact, be ok. That encouraged him to reach out to the local chapter and get my mom involved. A few years later, at a convention, met a rebellious boy from Alabama who drove a ‘69 Camaro all the way from Selma to San Francisco for a date. That was my dad.

Jerry was a regular attendee at the national conferences, and he always took time to greet the new families who were unsure of what their child’s life would be like. I remember how excited he was when I went to college; for most of his generation, our people didn’t go to college and many didn’t graduate high school. Those were the days before Section 504 or the ADA required physical accessibility of colleges and universities, and the public in general. School, and most everyday jobs, were physically inaccessible to Jerry’s generation. It would seem like light years until people actually started believing that people with disabilities could learn, could achieve, could love.

To adult LPs, Jerry and his wife were elders of our community. They were the folks you would point out to your kids when you saw them in the hotel restaurant. To kids they were heroes. To adolescents, they were a little something more complicated. When you’re plagued with feelings of not fitting in, and you find yourself fending off insults by both peers and members of the general public, it was easy to feel embarrassed by those that portrayed the Munchkins.

I will admit that snarky teenager still lives in me a bit. The last time I saw Jerry at a Little People Convention, I stood in line with my husband to get an autograph for our future children. I found myself wondering, aloud, what would be the most creative pick-up line you could use if you were the last living Munchkin. The list was long, and served to embarrass my husband for over an hour.

Now as an adult, and a parent myself, we’ve watched the film with our kids. My kids are still young, but I imagine that they’ll grow up with us having similar conversations about representation, about history, and about why things like “The Wizard of Oz” matter. And while it leaves us with longing for better, more well-developed work, its legacy laid the groundwork for that.

So thank you, Jerry. Thank you for the work you did to put our people in front of the camera, for taking the time to talk to so many scared families, for encouraging so many awestruck kids, for sharing so many stories, and for helping create a community at a time when so many of our people felt so alone. And for the other 123 of you changed history that day in October 1938, thank you for making it possible for me to be here now.

Now, Congressional Republicans are trying to make it even harder for the frailest, poorest, and most vulnerable Americans to access food assistance. They seek to impose harsh new work requirements that will force some of the most marginalized Americans to run a convoluted labyrinth of wage and hour verification paperwork over and over again.

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It is a transparently cynical move to chop the program and take food from people who are hungry. Even those who do everything the system demands will be denied assistance—and I am absolutely certain of this, because it almost happened to me.

A few years ago, I was sick and getting sicker. I was not yet sick enough for surgery but far too sick to work.

I have Crohn’s, a chronic, incurable inflammatory bowel disease that causes my immune system to shred portions of my own small intestine. On a certain level, it’s a simple plumbing problem: the small intestine is like a long flexible pipe that brings food from the stomach to the large intestine, winding and twisting back and forth in the abdomen. When scar tissue builds up, it constricts the pipe, making it too narrow for most foods to get through. And then the pipe can clog.

Those clogs are called “small bowel obstructions” and, unlike a backed-up sink, they’re a potentially life-threatening medical emergency. I’ve experienced the special hell of having a tube shoved up my nose, down my throat, through my stomach and into my small intestine. I’ve watched as that tube sucked small bits of almond out through my nose. And, with some of the finest professors of surgery Harvard Medical School has to offer, I’ve discussed the odds that I’d live through emergency surgery if suction didn’t work.

After the almond incident, my physicians prescribed a strict low-residue and low-FODMAP diet. I was highly motivated to adhere to it; I understood the stakes. But as I got sicker and became unable to work, I could barely afford any food, never mind the diet my physicians prescribed. I didn’t have any income. So I applied for SNAP.

First, I faced an extensive application. But, more importantly, I was told that a face-to-face interview was required, and that the Massachusetts Department of Transitional Assistance (DTA), the state agency charged with administering SNAP, scheduled the interview on their timetable. As an applicant, you showed up when they told you, where they told you—or no food for you.

My life at this point consisted of debilitating symptoms: constant diarrhea, severe abdominal pain, nausea that even powerful prescription anti-emetics barely controlled, anemia, arthritis, and crippling fatigue. But despite my failing health, I had not been declared disabled by any government agency.

Under the current SNAP eligibility rules, an “Able-Bodied Adult Without Dependents” (ABAWD) between the ages of 18 and 49 can only receive 3 months of SNAP benefits in any 3-year period if they do not meet the existing SNAP work requirements. Yes, there are already work requirements for SNAP, but Congressional Republicans are pushing for still more draconian rules. They assure us that just as disabled folks are supposed to be exempt under the current rules—an exemption that has proven elusive—they will be exempt under the new regulations, too.

However, proving disability to the government is exceedingly difficult. First, it virtually requires ongoing, meaningful, affordable access to comprehensive medical care. Without medical records, government agencies are loathe to find an applicant disabled. (Yet, conservatives are also working to roll back access to health care at every turn, including by imposing work requirements on Medicaid, making care even more of a challenge to obtain.) Proving disability also often requires the cooperation of overworked health care providers in completing legal forms they’re not trained to deal with. Doctors are taught to diagnose and treat, not judge someone’s capacity to work against specific, highly technical legal criteria. And it means a lot of work for the applicant—work they may be too sick to do.

When I was eventually healthy enough to apply for Supplemental Security Income (SSI), it took dozens of hours of work from me to gather, review, and collate my voluminous medical records (over 500 pages). It took even more time to complete the application forms Social Security sent me. I approached the work and writing that formed the basis of my SSI application like it was an appellate case before the Massachusetts Supreme Court. In total, just applying for SSI took me more than two months of working whenever I was medically able. I was fortunate enough to get approved for SSI at the initial application stage. Many people my age don’t.

Because I was so sick, I asked DTA to conduct the interview for my SNAP application via telephone. I also asked that the call be in the afternoon because my symptoms were a bit more manageable then. As an attorney, I had the benefit of knowing that the Code of Massachusetts Regulations, part of the law that governs SNAP applications, required that DTA grant my request. But DTA didn’t reply—or at least, I thought they didn’t reply.

Despite giving DTA my full, complete, and correct address, that’s not where they were sending letters. They failed to include my apartment number on the mail they sent me. (As if I lived in a house, when I couldn’t even make the rent on my half of a tiny one-bedroom apartment.) DTA screwed up, I never got their mail, and I wasn’t receiving SNAP.

I called my DTA caseworker, just as I was supposed to do. I would call and then wait on hold for 30 to 45 minutes. An operator would then answer, and transfer me to a voice mailbox. (I wasn’t given the option of directly dialing the extension.) If the voice mailbox wasn’t full, I would leave a message. If it was full, which was usually the case, I would have to start over. After another 30 to 45 minutes on hold, I’d ask the operator for a different case worker, and leave that person a message. I repeated this process daily.

While waiting for DTA to return my many messages, I could never, ever allow the phone to go unanswered—they simply wouldn’t try calling again. No matter how sick I was, no matter if I was vomiting or toileting or running a 103° fever, if I missed a phone call from DTA, during my next interaction with them, they’d accuse me of “non-compliance.”*

Usually the person returning my desperate messages was someone who didn’t “know the file” and whose only reply to my desperate questions like “What do I need to do in order to schedule the formal interview?” was “Sorry, can’t help.” I was slipping through the cracks.

Because I am a lawyer, I knew that if I could somehow hang on long enough, I could eventually get my case before an administrative law judge. And, because I am a lawyer, I knew how to keep a log of every single SNAP related phone call I had in a way that a judge would understand and likely find credible. I knew which conversations I was legally allowed to record, and which I wasn’t. I knew what was important to include in the notes I took during every call. Or I did sometimes. Other times the pain, the fatigue, and the brain fog from the methotrexate—a chemo drug used to treat autoimmune diseases—was too much and I couldn’t think straight. I could only hope they didn’t call then.

And then one day, after weeks of waiting and dozens of hours spent trying to fight my way through the red tape, I finally got a piece of mail from DTA. I opened the letter outside. It was summer, and I wasn’t supposed to be in the sun because of one of the medications I was on. They denied my application because I didn’t attend the “in-person interview.” I sat in the street and cried—and I wasn’t supposed to cry, either. After choking down homemade oral rehydration solution, I got to work on this:

What you’ve just read is, essentially, a legal complaint and a motion for a hearing before an administrative law judge. Although the letter is just two pages, dozens of hours of research went into drafting it. Not to mention four years of college, two years of public health graduate school, and three years of law school that enabled me to research the pertinent state and federal statutes and regulations, as well as find and analyze all the relevant legal rulings. In response, DTA reversed the denial and awarded benefits retroactive to the date of my SNAP application. The entire process had taken 10 weeks.

My question for Congressional Republicans is this: Could you—while in constant pain, malnourished, dehydrated, and terrified of eating the wrong thing because it could kill you—have done better? Adding more punishing work requirements for nutritional assistance will harm some of your most vulnerable constituents.

In the wealthiest country in the world, you shouldn’t need to be a lawyer to get a little help with food.

* Editor’s note: A DTA spokesperson says that subsequent to the author’s applying for benefits, the agency has made numerous “reforms,” including: a “simplified SNAP application,” a mobile app for smart phones, a web-based portal for clients “to self-service and view their information,” and allowing any available caseworker to assist an applicant.

Throughout 2017, my family and I have fought constantly for Charlie’s health care. I have marched, spoken at press conferences, and met with more representatives than I can count to try to explain what Congressional Republican attempts to repeal Obamacare and slash Medicaid funding would do to my family. I’ve spent days, hours, and weeks travelling back and forth between my home in Charlottesville, Virginia, and Washington, D.C., because I knew fighting for Charlie’s life meant fighting for affordable, accessible, and comprehensive health care.

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When Charlie was an infant, I would often sit and watch her. Sometimes, she would forget to breathe and I would gently remind her with a nudge. When we defeated Graham-Cassidy, the last attempt to overturn the Affordable Care Act, it finally felt like we could both breathe more easily.

But now there is a new threat on the horizon: HR 620, the ADA Education and Reform Act, has already passed the House and is at risk of being taken up in the Senate. If it’s passed, the bill will change key provisions of the Americans with Disabilities Act (ADA), shifting the burden of accessibility from businesses to people with disabilities.

For 28 years now, the ADA has given people like Charlie the unassailable right to be part of public life: They cannot be discriminated against at work or in school, and businesses have to be accessible by including things like curb cuts and accessible bathroom stalls. Over the years, people with disabilities have needed to pursue litigation under the ADA when businesses refuse to become accessible. And it’s worked. Our society is much more accessible today than it was nearly three decades ago when disabled activists had to climb up the steps of the Capitol to get attention. But HR 620 threatens to send us back to that time—a time when people with disabilities were excluded from public life.

Under HR 620, people with disabilities will have to notify businesses that they are violating the ADA, citing very specific details regarding the provisions of the statute that apply to their particular situation. Business owners would then have up to six months to make “substantial progress” toward fixing the issue, but they don’t have to be fully accessible. That is at least six months before the person filing the complaint can access a restaurant, or a movie theater, or a book store that’s effectively barred its doors to people with disabilities—even though accessibility has been the law for almost 30 years.

No other marginalized community needs to demonstrate why they deserve to access a public space, let alone cite specific legal provisions, in order to be able to access that space. Why should Charlie have to?

The ADA made the American Dream possible for a generation of people with disabilities. Now my child is being told the American Dream is no longer available to her. This isn’t the United States of America I know, and it isn’t the society I want to live in.

According to the U.S. Department of Education, children of color are significantly more likely to be referred to special education than white children. They are also more likely to be educated in segregated settings—away from nondisabled peers—and to be suspended from school. For example, in the 2013-14 school year, 6 percent of all public school children received at least one out-of-school suspension. This figure doubles to 12 percent for children with disabilities, and doubles again to approximately one quarter of black, Hispanic, multi-racial, and American Indian/Alaska Native boys with disabilities.

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That much time in segregated classrooms—or being out of class entirely—drags down students’ academic performance. Only 3 percent of black 4th graders in special education were proficient in reading; Hispanic and American Indian/Alaska Native students are 5 and 6 percent proficient, respectively. Since the overwhelming majority of children in special education can complete grade-level work with appropriate interventions and supports, these numbers point to something beyond student ability: an unequal education. Students in segregated classrooms are less likely to engage with effective educators and less likely to participate in enrichment activities. Decades of research clearly show that children with disabilities perform better academically when they are held to high expectations and have access to the general curriculum.

That’s all in addition to the fact that the U.S. Supreme Court ruled 60 years ago that “separate but equal” is inherently unequal.

When Congress passed the Individuals with Disabilities Education Act (IDEA) in 2004 to revamp special education, it tried to address this inequality through specific provisions about significant disproportionality. But more than a decade later, black students are still 40 percent more likely to be identified as needing special education and are twice as likely to be labeled as having an intellectual disability or emotional disturbance. Hispanic students are 40 percent more likely to be labeled as having a learning disability, and American Indian/Alaska Native students are 60 percent more likely to labeled as having an intellectual disability. At the school district level, the data can be even worse: Almost 800 school districts identified black students with emotional disturbance 300 percent more often than white students.

That’s in part because the IDEA doesn’t define “significant disproportionality.” The Department of Education originally gave states full discretion on how to identify school districts, so states created definitions that were almost impossible to meet—and let themselves off the hook when it came to addressing any problems. According to the Government Accountability Office (GAO), out of a total of more 15,000 school districts in the United States, only 356 school districts (approximately 2 percent) were flagged as having overrepresented students of color in special education.

In 2016, the Department of Education issued regulations requiring states to use a standard approach to identify significant disproportionality. It also established more effective ways to address the issue. This is the specific part of the law that the Trump administration wants to delay: the one with the potential to make it effective. More than one hundred civil rights and disability organizations have already expressed opposition to this roll-back.

According to the Trump administration, the rule might not address the problem. But since states are just beginning the appropriate analyses and are not required to comply with the rule until July 2018, they simply don’t have enough data to say that the rule doesn’t work. The administration also argues that states are in the best position to evaluate the problem, despite the decade of evidence proving otherwise.

Unfortunately, this appears to be part of a pattern of rolling back hard-won protections for children and adults with disabilities from the current administration. We know that Secretary Betsy DeVos is considering rescinding critical guidance protecting children of color and children with disabilities from unfair and illegal discipline practices. The Department of Justice recently rescinded a number of pieces of significant guidance regarding the civil rights of individuals with disabilities under the Americans with Disabilities Act. And, during her confirmation hearing and subsequently, Secretary DeVos has displayed a lack of clarity and purpose regarding enforcing the rights of children with disabilities and recently rescinded 72 pieces of guidance related to special education without sufficient explanation.

Under federal law, the public has 75 days to provide comment on this proposed rule. Children of color have already waited through Jim Crow and segregation, Supreme Court cases and legislation, for an equal public education. How much longer must they wait?

For more about this, listen to Michael Yudin on the February 2 episode of Off-Kilter. 

While all eyes were focused on the latest effort by conservatives to take away your health care, Congress quietly advanced a bill that would roll back the civil rights of people with disabilities by exactly 27 years—to a time before the Americans with Disabilities Act. The ADA Education and Reform Act of 2017 would create onerous red tape for people with disabilities attempting to enforce their rights under Title III the ADA (the part of the statute that applies to places of public accommodation). It would not only shift the burden of compliance from business owners to people with disabilities, but would allow businesses to delay compliance with a decades-old civil rights law for months—if not years.

I spoke with Rebecca Cokley, a Senior Fellow at the Center for American Progress and the former Executive Director of the National Council on Disability, about the stakes of this fight for people with disabilities and allies.

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Rebecca  Vallas: So the bill is misleadingly titled “The ADA Education and Reform Act of 2017”. It should probably be called the “Let’s throw the ADA in the sewer and stomp on it with really high sharp heels bill of 2017”. Is that a fair characterization and what would the bill do?

Rebecca Cokley: I think that’s more than fair—and after we step on it with some high heels we’re going to stick it in a paper shredder and then use that to line a bird cage. The bill itself would actually push back requirements around accessibility and accommodations. [The Americans with Disabilities Act] has been the law for 27 years. We’ve had whole generations grow up that have never understood life before it. And what this would do is: a) it would put the onus much more on people with disabilities to prove discrimination in very tedious ways, and b) it would then allow business even more time, a minimum of an additional six months after a complaint is filed, not even to remedy the barrier but to “make substantial progress.” So that could mean instead of having an actual ramp so people could access a place,  somebody could come out and tell them what the ramp would cost.

RV: So say you are a person who uses a power wheelchair, and you get to a building and you find you can’t get inside. And you want to enforce your rights under the ADA.  What new hoops would you have to jump through under this proposal?

RC: The way the complaint process will actually shift is it will require such technical language that the average person with a disability is not going to feel qualified or empowered enough to even understand where in the law their particular situation might fit.

RV: So is what we expect to happen basically the lack of enforcement of a law that’s been the law of the land for 27 years? Is that eventually where this heads?

RC: I think there’s no other destination for it to head than that.

RV: You are a member of what’s often called the ADA generation and I would love for you to paint a picture of what life looked like before 1990—and before the ADA was in place.

RC: I’m part of the 20 percent of people with disabilities that grew up with parents with the same disability that they had. My dad became paralyzed when I was a year and a half and both my parents were little people. I remember my mom being denied tenure because she could only use the bottom six inches of a chalkboard. That was actually used to deny her tenure at the college that she had worked for decades. I remember wanting to go places with my dad who used a wheelchair and not being able to enter buildings. I remember my dad wanting to go vote and them having to bring the ballot out to his car and him getting really upset. He had been very active in voting rights issues in the south and was upset that in 1988 he couldn’t vote for the presidential election the same way that everybody in his family could.

RV: So how did the ADA change things?

RC: I think for so many people with disabilities you don’t even think about it anymore. And people without disabilities don’t even think about it anymore. You’re walking down the street managing your luggage and you take it down a curb cut, which is typically the example people tend to use. Or trying to get suitcases up a flight of stairs and there’s a ramp. The ADA really did a number of different things that were historic, the first of which was laying out a definition of disability that was not based on an inability to work or a requirement for health care. It was really talking about having a condition that affected the activities of daily living.

So let’s say you are a burn victim, and it doesn’t impact your ability to do your job but you are still discriminated against because you’re perceived as a person with a disability. Or you have a history of impairment—if you’re an individual who had a substance abuse addiction and were in rehab and had come through recovery, you still have that past history that qualifies you as a person with a disability. So it really cast a net that included millions of individuals with similar experiences tied to being historically discriminated against.

RV: Attacks on the ADA are nothing new, but this latest wave is actually gaining steam in Congress. This comes on the heels of a 60 Minutes piece that alleges widespread so-called frivolous lawsuits—people with disabilities who didn’t actually face discrimination but are just trying to milk the system and maybe even get money out of it.   Don’t we need to rein in frivolous lawsuits?

RC: Even in the original statute, there is means for dealing with frivolous lawsuits. State courts and state bar associations can punish attorneys who are filing lawsuits that are proved to be frivolous.

RV: So who is behind this bill and what’s really going on here?

RC: It’s important to note that both Democrats and Republicans are behind this bill. We continue to talk about disability rights being a bipartisan issue, but we’re also under bipartisan attack. You know we continue to hear that business feels attacked because they’ve been asked to comply with the ADA every year for the last 27 years. But the idea that after 27 years they should have even more time and then still refuse to be accessible—at what point are they going to have to comply with the law? Or are we just going to keep creating a slippery and slipperier and slipperiest slope—but actually not a slope because we’re not about accessibility, so a staircase.

RV: The 60 Minutes piece is part of a pattern of media coverage of pretty much only knowing, with very few exceptions, how to paint people with disabilities as takers or abusers of a system that they see a way to take advantage of. Am I off base here?

RC: Not at all.  I think there really is a myth that people with disabilities are collecting monetary damages off of this. It is not like you have a bunch of disabled veterans swimming in Scrooge McDuck’s money bin based on ADA lawsuits. People cannot collect monetary damages on these claims. All you can do—the only remedy that’s available—is having that place made accessible.

RV: Attorney’s fees and some [compensation] for their time, but that was intentionally done to enable people to find lawyers who are willing to take those cases.

RC: Exactly. The disability community is a poor community— 50 percent of people with disabilities live at or below the poverty level.

RV: So is the fight that people with disabilities are facing in 2017 categorically different from what other groups that face discrimination are [fighting] at this point in time?

RC: In some ways yes, in some ways no. I think I can connect it most easily with how several of our allies in communities of color felt about the rollback of affirmative action programs. You want your children to have a better future than you. You want your children to have better access to services, to programs, to school, to the world. And if this passes, my children are going to have a tougher life than I had, and that just doesn’t seem right.

RV: And it doesn’t seem very American.

RC: No, not at all.

This mindset is also reflected in our national politics and apparent in the rhetoric employed by the Trump administration and the GOP in their 2018 budget proposals, which would severely cut safety-net programs.

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“There’s a dignity to work, and there’s a necessity to work to help the country succeed,” White House Budget Director Mick Mulvaney told CNN at the end of May. Mulvaney added that the United States should measure its success “by the number of people we help get off of those programs and get back in charge of their own lives.”

The Department of Health and Human Services has used the same rhetoric to justify specific attacks on Medicaid. Only hours after she was sworn into her post, Seema Verma, administrator of the Centers for Medicare and Medicaid Services, and her boss, Health and Human Services Secretary Tom Price, sent out letters to all the nation’s governors urging them to impose insurance premiums on Medicaid recipients and provide work incentives.

Statements like these—and other calls to add work requirements to Medicaid eligibility guidelines—ignore the realities of who the program serves and its actual impacts. For those able-bodied people on Medicaid, the majority are already working. And for the 7 million nonelderly adults with disabilities for whom Medicaid offers primary or supplemental coverage, expanded access to Medicaid contributes to higher employment rates.

I’m one of those people. Eight years ago, I completed my master’s degree with one plan in mind: to launch a successful multi-decade career in environmental policy that would require regular overtime, frequent travel, and at least eight hours a day sitting at a desk and staring into a computer. I made this plan despite a history of sporadic health issues that tended to lay me out completely for several days every month, and debilitating headaches a few evenings every week. It wasn’t until a few years ago, when new diagnoses explained my daily struggle with overwhelming pain and fatigue, that I finally admitted to myself that my health status would prevent me from pursuing full-time work. Since then, I have survived by working a patchwork of part-time positions and freelance gigs, which has lowered my income and made me eligible for Medicaid.

And I am not alone.

According to recent data from the Bureau of Labor Statistics, 34 percent of workers with a disability were employed part-time in 2016, compared with only 18 percent of workers with no disability. Part-time jobs in the United States usually pay low hourly wages and tend not to offer crucial benefits such as health insurance: only 19 percent of part-time workers have access to medical care benefits.

For millions of disabled people in this position, the Affordable Care Act has filled a crucial need by expanding Medicaid coverage. Medicaid expansion significantly raised income requirements (by more than double) for approximately 11 million people living in the 31 states and the District of Columbia that adopted it. It also opened up enrollment to some childless adults, and dropped stringent asset limits. This meant that many more disabled people were now able to work—or work more hours and make higher wages, as well as have more savings—than prior to the expansion.

This was confirmed by a collaborative study released earlier this year that found that working-age adults who identify as having disabilities were much more likely to be employed in Medicaid expansion states than in non-expansion states.

“Having access to comprehensive insurance without having to go through a lengthy and demoralizing disability determination process is very important,” says Jean Hall, Director of the Institute for Health and Disability Policy Studies at the University of Kansas and lead author of the study. “Medicaid expansion allows people with disabilities to work more, and accumulate assets, without fear of losing their eligibility for Medicaid coverage.”

The recently-won expansion has been under continuous threat as Trump and Congressional Republicans have tried to follow through on years of promises to repeal and replace the ACA. The most recent effort, the Graham-Cassidy bill, would slash Medicaid funding and allow insurers to charge higher premiums for those with pre-existing conditions. These changes could have particularly severe consequences for people with chronic health conditions who have Medicaid through the expansion.

Kelly O’Brien of Sandusky, Ohio, has myalgic encephalomyelitis, postural orthostatic tachycardia syndrome, and peripheral neuropathy. She works part-time in a bridal shop that offers her flexible scheduling and other accommodations while she builds up a freelance writing business on the side.

“My medications would cost more than I make in a month,” says O’Brien. “Yet without my medication, I wouldn’t be able to work at all and thus wouldn’t have any income.”

Even for those who can work full time and have access to so-called comprehensive health insurance through their jobs, the price of their co-pays and deductibles for treatments to manage their conditions can erase most—if not all—of their income gains.

Take the case of 38-year-old Valéria Souza, who recently moved from Missouri back to her home state of Massachusetts. Souza has multiple sclerosis and was spending an average of $6,000 to $10,000 annually out of pocket on co-pays and deductibles to manage her illness. This was despite having what was considered a “good” health insurance plan with her former position in academia. These expenses comprised between 30 to 50 percent of her yearly income, eventually forcing her to work several part-time jobs in addition to her full-time career and forcing her to work in excess of 60 hours a week to compensate for her financial losses.

“This situation is not sustainable for someone with MS as a long-term life plan,” says Souza. “At some point, I won’t be able to work this much.”

This is one of the main reasons why Souza moved back to her home state: Massachusetts expanded Medicaid, while Missouri did not.

“I would like to know that Medicaid is available to me if and when I need it,” she says. Though, if Graham-Cassidy becomes law, that would threaten Souza’s plans.

For those of us with medical conditions that limit our ability to work full time, Medicaid is often our only option. If our government officials want more of us to have jobs, maintaining and building on Medicaid expansion is one proven way to do that. But if they cut it or scale it back in any way, the consequences for us will be severe.

Though some of the damage that this bill does has been well publicized, there is a particularly odious impact of Trumpcare getting very little attention: It threatens to force seniors and people with disabilities into nursing homes and institutions.

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For the last several decades, disability rights advocates have fought to expand funding for Medicaid-funded home and community-based services, so that seniors and people with disabilities can live in their own homes, control their own lives, and be fully included in society. Thanks to generations of advocacy, millions of Americans with disabilities receive Medicaid-funded home care today.

When the Affordable Care Act was passed, legislators started to prioritize funding for programs that provide people with disabilities with services in their homes, rather than relegating those who require additional support to institutions and nursing homes. Through the ACA, Congress created several programs designed to reward states with additional Medicaid funds if they expanded in-home care for seniors and people with disabilities.

One of the most successful of these programs is the Community First Choice State Option (CFC), which provides funding for services that help seniors and people with disabilities get out of bed, dress, and perform other activities necessary for daily life. A 2015 review of the four states that have been using the CFC the longest found that the program was serving over 500,000 people—today, that number is likely much larger. But the AHCA sunsets this program in 2020, cutting about $12 billion in funding from in-home care from seniors and people with disabilities over the next decade.

That is only a small part of the $839 billion in Medicaid cuts AHCA imposes overall, which themselves will devastate Medicaid-funded services to seniors and people with disabilities across the country. AHCA also sets “caps” on each states’ Medicaid funding that will grow at a much slower rate than the existing Medicaid funding system, cutting hundreds of billions of funding over the next decade relative to current law. In addition, the caps also freeze in place state funding decisions at the time they’re made—so a state that offered relatively stingy benefits to people with disabilities or children in 2017 would no longer be able to access additional federal funds to expand those services in the future.

Some Republican House members realized the harm AHCA will cause to their constituents with disabilities. Rep. Daniel Webster (FL-10) bemoaned the likely impact AHCA’s Medicaid cuts would have on seniors living in his district, so he introduced an amendment to exempt nursing homes from AHCA’s caps on Medicaid funding during the March push to pass the bill. The amendment did not offer protections for home care, so it actually would have worsened Medicaid’s longstanding bias in favor of institutional care.

The GOP leadership still refused to adopt Webster’s amendment. For them, even weak protections for seniors and people with disabilities go too far.

Despite stating clearly on Tuesday that his “concern that Florida will be penalized under the American Health Care Act because demand for Medicaid-funded nursing home beds has not been fixed,” Webster voted in favor of the American Health Care Act today—in exchange for “assurances” from the Trump White House that his concerns will be addressed in the future.

Republicans in the House continue to put their faith in Donald Trump, instead of insisting on meager protections of their own constituents’ needs. For too many members of Congress, the needs of seniors and people with disabilities are taking a backseat to trusting Donald Trump —and advancing his health care bill—at all costs.

For starters, The Post continues to over-count “working-age” beneficiaries by including more than half a million people over 65—even adding in some people who are more than 80 years old. Moreover, instead of using the Census Bureau’s American Community Survey (ACS)—what the Census calls “the premier source for detailed information about the American people”—The Post uses a far less common data setThe CDC’s “Bridged-Race Population Estimates” data set was developed for the purpose of permitting “estimation and comparison of race-specific statistics.” It is used by researchers whose main goal is to calculate consistent birth and death rates for small-sized racial and ethnic groups—not at all what The Post’s analysis attempts to do. Researchers commonly adjust data for special purposes—but with the understanding that in doing so, they sacrifice the data’s accuracy in other ways. from the Centers for Disease Control and Prevention (CDC). Compared to ACS data, these data undercount the number of working-age people in rural counties, which in turn jacks up The Post’s findings on the percentages of working-age people who are receiving disability benefits in these counties.

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But let’s not lose the forest for the trees here. Even using The Post’s flawed methods, they were only able to find one county—out of more than 3,100 counties nationwide—where the story’s central claim that “as many as one-third of working-age adults are receiving monthly disability checks” holds up. Not a single other county even comes close. In fact, The Post’s own analysis—which it has now made available in a public data file next to the story, yields an average rate of about 9.1 percent of working-age adults receiving benefits across rural counties—just three percentage points higher than the national average.*

And yet the article is framed as follows: “Across large swaths of the country,” the article still reads, “disability has become a force that has reshaped scores of mostly white, almost exclusively rural communities, where as many as one-third of working-age adults are receiving monthly disability checks.”

If by “large swaths” and “scores of… rural communities” The Post means McDowell County, West Virginia, population less than 21,000 residents—and nowhere else in America—then sure.

But the fact is there’s a word for using data this way: cherry-picking.

Moreover, if you swap out the unusual data set The Post chose for the aforementioned Census Bureau’s ACS data, you actually won’t find a single county in the U.S. where The Post’s central claim is true—and the dramatic percentages The Post’s map and other graphics depict start to look a lot less, well, dramatic.

Media should take great care in its coverage of critical programs like Social Security Disability Insurance. Reporting based on outliers—not to mention flawed data analysis—risks misleading the public and policymakers in ways that could jeopardize the economic wellbeing and even survival of millions of Americans with serious disabilities and severe illnesses who are already living on the financial brink.

Here’s hoping the rest of The Post’s disability series meets the highest bar for accuracy, even if that means less click-bait.

*The figure is the population-weighted average based on the working age population per The Post’s public data file. Researchers customarily use population-weighted averages to account for variations in county size.

The Post’s central assertion—flanked by an interactive map—was that as many as one-third of working-age adults in rural communities are living on monthly disability checks. But the data analysis supporting this argument doesn’t hold up.

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In a sidebar to the article, the Post says they used publicly available county-level data from the Social Security Administration (SSA) to count “every working-age person who receives benefits through the Supplemental Security Income (SSI) program, the Social Security Disability Insurance (SSDI) program or both.” But the Social Security Administration doesn’t publish the data needed for that calculation. In an email response to our request for these data, the SSA  confirmed that these data are “not readily available.”

The Center for American Progress also reached out to the Post to ask about their data. The Post confirmed in an email exchange that they did indeed rely on publicly available data, and identified the specific reports, tables, and figures they used.

We tried to replicate their analysis, and here’s why their numbers are flat-out wrong. (Warning: We are about to dive head-first into the weeds.)

The analysis overcounts working-age people receiving disability benefits by nearly 500,000. The SSA doesn’t publish county-level data on SSDI beneficiaries in the age range the Post defines as “working age” (18 to 64). SSA’s OASDI Beneficiaries by State and County report does provide county-level data on SSDI beneficiaries (Table 4), including disabled worker beneficiaries. However, of the 8,909,430 disabled worker SSDI beneficiaries whom the table breaks down by county, 472,080—or about 5 percent—are age 65 or older. Including these older disabled workers would inflate the share of working-age people with disabilities.

It overcounts “disabled adult children” by about 750,000. About 1 million SSDI beneficiaries are disabled adult children (DACs)—people whose disability onset occurred before age 22 and who are insured for SSDI benefits based on a parent’s work record. Since the Post claims to count working-age people receiving SSDI, SSI, or both, they need to include working-age DACs. But—contrary to the Post’s data sidebar—there are no data available on working-age DACs at the county level.

The same SSA table from above does provide county-level data on one group of “children” receiving SSDI—totaling 1,755,276 in 2015. The problem is, these children aren’t disabled adults—they’re actually the offspring of disabled workers. Most are under age 18, and most are not disabled. Not only does erroneously using these data mean including minors without disabilities, it also inflates the number of DACs by about three-quarters of a million, since the total number of DACs aged 18-64 is 977,776. What’s more, offspring of disabled workers and DACs are likely differently distributed across counties, creating problems in county-level comparisons.

It can’t accurately adjust for double-counting the 1.3 million working-age people who receive both SSDI and SSI (a.k.a. “concurrent beneficiaries”). About 1.3 million working-age Americans receive a small amount in benefits from both SSDI and SSI—generally people with very low incomes and limited resources. To avoid double-counting these folks, the Post would need county-level figures on concurrent beneficiaries. But here they run into another problem: SSA doesn’t publish county-level data on working-age concurrent beneficiaries. The Social Security Administration does provide the number of people receiving both SSI and Social Security benefits of any type (Table 3), but that figure also includes people receiving any other kind of Social Security benefit (like survivor or retirement benefits). What’s more, they also include concurrent beneficiaries who are children and adults 65 and older. Both of these issues make it impossible to calculate for working-age beneficiaries receiving both SSDI and SSI at the county level. So these county-level figures can’t give the Post what they need to accurately mitigate their double-counting problem.

It’s missing data for a whopping 106 counties. Mostly because of small population size, SSA doesn’t publish county-level data on SSI beneficiaries for 106 counties. This would be problematic for any county-level analysis. But it’s especially notable given that the Post’s article focuses on rural counties—as some 97 of the counties with missing data are rural. It’s unclear how the Post treats these counties in their analysis.

This might seem like a lot of trouble to go through to explain two inaccurate newspaper articles. But the thing is, misleading media reports have consequences—particularly in political climates like the one we’re living in right now. Just this week, White House budget director Mick Mulvaney once again opened the door to cutting Social Security Disability Insurance, despite President Trump’s pledge not to cut Social Security. Misleading media reports based on inaccurate data analysis risk giving Mulvaney and others cover to slash critical programs like SSDI.

Media covering this important program should get their facts straight before going to press.

No such luck.

Tuesday night, Secretary of Health and Human Services (HHS) Tom Price and Centers for Medicare and Medicaid Services (CMS) Administrator Seema Verma issued a letter to the nation’s governors laying out their vision for Medicaid. In the letter, they indicate a willingness to waive longstanding rules that are designed to protect low-income Americans from coercion, poverty, and exploitation.

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Price and Verma assert that “rigid and outdated implementation and interpretation of federal rules” hinder the Medicaid program from accomplishing its goals. They reiterate a popular (and false) conservative talking point that by providing states additional funds to expand Medicaid, the Affordable Care Act discouraged them from addressing the needs of people with disabilities on traditional Medicaid. Finally, they lay out HHS’s willingness to grant almost every ill-advised “flexibility” request in the right wing’s wish list on Medicaid—many of which place people with disabilities, seniors, and low-income Americans at extraordinary risk.

Making Medicaid Harder to Access

The letter indicates the Trump administration would be willing to let states introduce premiums and higher cost-sharing for Medicaid beneficiaries.  These measures were rejected under the Obama administration, since they interfere with the program’s ability to serve low-income people. But based on Price’s letter, they now look likely to sail through.

In particular, Price and Verma suggest states may wish to apply for permission to allow “emergency room copayments to encourage the use of primary and other non-emergency providers for non-emergency medical care.” It’s a laudable goal, but in rural areas where there is a shortage of clinicians who accept Medicaid patients—a common problem due to the program’s low reimbursement rates—emergency rooms are often the only practical option for low-income people. Policies that make emergency room visits more expensive are likely to simply discourage people from seeking necessary care.

Price and Verma also suggest states explore charging Medicaid beneficiaries premiums. Such measures ignore the underlying reality that Medicaid serves the deeply poor, who cannot sustain these costs by definition. Still, the suggestion is familiar to Verma—under her leadership as a health policy adviser to then-Governor Mike Pence, Indiana introduced monthly premiums in 2015. Failure to pay them was grounds for losing coverage, or having less access to vital health care services.

This newfound flexibility would also make it possible for states to enact damaging policies that they have been requesting for years. Arizona, Indiana, Kentucky, Montana, and Arkansas have all previously requested permission from the federal government to impose work requirements on Medicaid, which would deny people access to the program unless they are employed.

Arizona is also pursuing a five-year cap on Medicaid benefits. Under the plan, an individual must either be working full time or be receiving disability benefits from the Supplemental Security Income (SSI) or Social Security Disability program in order to keep Medicaid benefits past the five-year cap.

Both work requirements and time limits are likely to disproportionately impact people with disabilities. Even though the time limit proposals provide exemptions for people who are receiving benefits through SSI,  many disabled adults qualify for Medicaid on the basis of their income—not their disability status with the Social Security Administration. That’s because many disabled people are unable to navigate the Social Security Administration’s complex bureaucracy or, particularly among people with psychiatric disabilities, may not be fully aware of their own disability. As of 2009, 1 in 5 adults eligible for Medicaid on a basis other than disability (2.3 million people) and 1 in 10 children eligible on a basis other than disability or child welfare assistance (about 3 million children) had a mental health diagnosis.

As for work requirements, people with disabilities are more likely than other Medicaid recipients to be unemployed. These measures would place them at risk of losing the health care coverage that would help them enter or return to the workforce. Indeed, where Medicaid has been expanded, research has shown that participation in the workforce for disabled adults has increased.

Weakening Protections Against Institutionalization

In their letter, Price and Verma also indicate an intent to weaken vital Obama administration protections for seniors and people with disabilities.

In 2014, the Obama administration issued a rule designed to protect seniors and people with disabilities who receive home and community based services. The Home and Community Based Settings Rule helps ensure that when states fund community services for people with disabilities, they do so in a manner that promotes integration instead of replicating the isolation and control of institutional environments.

The Settings rule requires every state to ensure that those receiving community supports have the right to do basic things like invite visitors into their own home, choose when they eat or what they do during the day, have legally enforceable rights under a lease, and possess options as to where to live other than group homes and other ‘disability-specific settings.’ States have until 2019 to comply with the Settings rule, and a broad range of flexibility to implement it in a way that best meets the needs of their residents.

The rule is designed to protect individual liberty, so that Americans will not lose control over their most basic choices by virtue of old age or disability. Prior to the Settings rule, states were moving to fund community-based services on the grounds of old institutions or by organizing segregated villages “clustering” adults with intellectual disabilities all in one place, limiting contact with the broader society. The Obama administration rightly recognized that these “gated communities” grouping people with disabilities together to get services were institutions by another name, so it limited states’ ability to fund them with scarce community services dollars.

But Price and Verma intend to move the implementation date from 2019 to an unspecified period in the future. Beyond that, their letter also calls for rolling back federal oversight, placing individuals with disabilities at greater risk of warehousing by state governments that are too often willing to defer to service providers about the level of rights their disabled residents should be afforded.

Elsewhere in the letter, Price and Verma express interest in revisiting 2016 Obama administration regulations governing how and under what circumstances states can contract out the operation of their Medicaid programs to private insurance companies, while fast tracking further state requests for “flexibility” in Medicaid.

Advocates at the state level must seek to organize in order to stop the worst of these ill-advised “flexibility” requests that are emerging from state legislatures and state Medicaid agencies. And governors in both parties must be told in no uncertain terms that taking advantage of the Trump administration’s offer to allow the gutting of Medicaid will not be viewed kindly by their voters.

Though this administration fails to recognize it, the rights of people with disabilities deserve federal protection. Just as states frequently fail to protect the rights of racial and ethnic minorities, women, and the LGBTQ community (all constituencies who are also under attack by the Trump administration), so too are state governments frequently willing to compromise the rights of disabled Americans for the sake of cost, convenience, or prejudice.

We can’t afford to be flexible when it comes to freedom and basic access to health care for every American.

Her symptoms first appeared a little after she turned one. She still wasn’t walking or crawling, but otherwise she was healthy and was hitting her milestones—she could say about a dozen words, feed herself, and play with her toys. But when she was around 14 months old, we noticed that Caroline was making repetitive movements with her hands that didn’t seem voluntary. Within a couple of weeks, she started losing her words and choking on her food. Eventually, she started losing her ability to hold things with her hands. We finally got her diagnosis when she was 17 months old.

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Now Caroline takes about ten different medications, multiple times a day. She takes 4 different types of medication for her seizures, which she has about 90 times a year. Without them, she would probably seize all throughout the day, every day. She undergoes a couple of hours total of lung treatment every day to avoid pneumonia,  and takes other medications to relax her stiff body, make sure she doesn’t vomit all the time,  and help her sleep. Her involuntary movements keep her up at night, and if she didn’t take medication she would only get a couple of hours of sleep every night.

Without Medicaid, I don’t know if we’d be able to afford this treatment. For Caroline, this is a matter of life and death.

Medicaid also offers several hours of skilled nursing care, which allows me and my husband to hold jobs. Without that coverage, one of us would have to quit our jobs—then we would not be able to afford all of the medical care that Caroline needs. That alone would put her life at risk.

I never imagined that I would have a child who would be dependent on us for every aspect of daily living for the rest of her life—from changing her diapers, to repositioning her to make sure she is comfortable throughout the day. And I never imagined that we would depend so much on a program like Medicaid.

But I also never imagined that I could love someone this much.

I want Caroline to live. I want her to feel safe, I want her to feel loved, and I want her to live in our home so that I can take care of her for as long as she is alive. Medicaid is the only way for us to be able to do that.

I would like to invite President Trump to meet Caroline and spend time with her, or with other kids like her. I think he would see first-hand how Medicaid helps us function as a family.

For more than a year I was unable to speak, sit up, or eat solid food. In June 2015, first responders wheeled me into the emergency room, too weak to eat, drink, or elevate my head. I had been, essentially, waiting to die of dehydration. Besides administering some much-needed fluids, doctors offered little help.

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I have among the most severe cases of chronic fatigue syndrome (sometimes known as myalgic encephalomyelitis, or ME). It’s a devastating multi-system disease that’s been given a patronizing name. The cause is still unknown, which makes getting a proper diagnosis—often necessary for insurance and disability coverage—near impossible.

When I was released from the hospital in 2015, my family learned that California’s state-administered Medicaid health care program, Medi-Cal, would not cover the ambulance ride to transport me home because none of my conditions were considered “legitimate.” I took the ambulance anyway, and paid around $1,500 for the ride out-of-pocket.

Several months later, I became so dehydrated that my family decided to pay more than $150 a day for a nurse to come to our house to administer intravenous saline to keep me alive. Large doses of intravenous saline were, and still are, the only way to keep my body functioning.

My medical care has become a privilege that costs me more than $1,200 a month. In the last year, I spent roughly $73,000 on my health care—more than double my annual income when I was healthy and working full-time.

Historically, the National Institutes of Health (NIH), has allotted only a paltry amount of attention and funding—$6 million—to ME research. Some headway has been made in recent years, at least in part because advocacy through the #MillionsMissing campaign has brought the lack of funding to legislators’ attention. In November 2016, the NIH tentatively announced plans to increase research funding for ME to roughly $15 million for fiscal year 2017. But now, with Republicans controlling both Congress and the White House, there has been a change in what was promised. In January the NIH said it will actually decrease funding, allotting $1 million less than in 2016.

The amount is minuscule compared to the funds that the government has at its disposal. The ME community has needed a substantial increase in government funding for decades. More funding would mean more research; more research would mean more biomarkers; and more biomarkers would mean the potential for a diagnostic test. These scientific breakthroughs would mean medical professionals would be able to better understand the disease—and therein lies the solution. This path has potential for the medical establishment and government to compensate for decades of belittling patients who suffer from a devastating disease, finally bringing widespread legitimacy to ME—and relief to millions of patients. That would be real progress.

But it may never happen at all.

Before Donald Trump shocked the world by winning the election, I was hopeful that the Affordable Care Act (ACA) would, in time, be expanded so that more of my medical needs would be covered by insurance. But now, barring a radical turn of events, that seems—at best—highly unlikely.

If the Trump Administration repeals the ACA, even simple treatments—like saline infusions and in-home nurse and doctor visits—will cost egregious amounts of money. My savings account has been zeroed-out, and I receive less than $900 in monthly disability checks. For the past year, my medical expenses alone have been more than $6,000 a month.

The plans that have been floated to replace the ACA do little for people with disabilities or low incomes. A replacement would likely offer a flat credit based on age, and it wouldn’t cover the care I need.  It would also dramatically weaken Medicaid, decimating services for people with disabilities and serious illnesses.

It would be unfair to say that the ACA has no room for improvement. But for me—and I imagine for most poor, chronically ill people—it is something to build on, not something to dismantle.

Because what happens next, for us, could be a matter of life or death.

Most Americans see Medicaid as only a health insurance program, but it is also the main source of funding for a wide variety of disability and aging services that keep people out of institutions. From the 93-year-old grandmother who needs an attendant to help her get out of bed, to the 24-year-old with Down Syndrome receiving a job coach, to the 6-year-old with a disability whose parents need support paying for skilled nursing care in their home—the Medicaid program is critical to ensuring the independence and freedom of disabled people of all kinds.

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“Block-granting” the program will transform it from a guaranteed benefit for low-income Americans and people with disabilities to an annual lump sum payment to states that is not tied to the need for services. If an increasing number of people needs these healthcare services, a block grant will not adjust to meet rising demand.

In addition, under the current Medicaid program, the federal government matches each dollar spent by states, enabling policymakers to make new investments toward eliminating waiting lists and broadening available services. However, without the guarantee of matching funds, states will not be able to sustain existing services—much less expand them to meet the tremendous unmet need in the disability community.

In fact, previous block grant proposals resulted in a loss of approximately 1 trillion dollars of federal investment in Medicaid over the next decade.

Additionally, the Trump approach would diminish the federal government’s historic role in using Medicaid funds to deinstitutionalize seniors and people with disabilities. For nearly 20 years—since the Supreme Court ruled in Olmstead v. L.C. that people with disabilities have a right to access supports in the community—federal policymakers have used Medicaid dollars to reward states that moved people out of institutional facilities and instead offer in-home services and supports.

These efforts depend on the federal government using innovative programs like Money Follows the Person. This program helped more than 63,300 people with disabilities leave institutional settings by providing an enhanced federal match rate to states to cover the full cost of supporting a person in the first year after they leave an institution.

In the absence of a federal role in Medicaid to promote community living, people with disabilities will find themselves at greater risk of institutionalization—despite the fact that they overwhelmingly express a preference for living in their own homes and communities.

As we fight back against Donald Trump’s assault on so many different communities, people with disabilities supported by the Medicaid program deserve our full advocacy and activism too.

The majority of voters are still unlikely to face issues on Election Day, but the new burdens fall disproportionately on a select cohort of Americans. Here are the groups of people who will face some of the steepest battles to cast their vote.

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People of color

African-Americans had the highest voter turnout rates in 2012, but new obstacles could keep many black voters from the ballot box this year. Laws that require voters to present photo ID at the polls—which have cropped up in eight states since 2013, bringing the total to 34 states—disproportionately impact African-Americans. That’s because people of color are less likely than whites to have the specific forms of required photo ID, and because these laws are more common in  Southern states (where African-Americans are concentrated).

In addition to obstructive voter ID laws, Latinos, Asian-Americans, and Native Americans are often plagued by language barriers. While the Voting Rights Act contains protections for language-minority voters, poll workers are not always aware of them (so they might not honor these voters’ rights, for example, to have someone assist them at the polls).

People of color often have to take more time and travel further distances in order to vote. In 2012, black and Latino voters waited nearly twice as long as white voters to cast their ballots, likely due in part to state decisions to restrict early voting. And this year, Native Americans in northern Nevada will have to travel nearly 100 miles round-trip to cast their ballot in November.

Homeless people

First, the good news: in recent years, court decisions and new laws at both the state and federal level have eliminated formal bans on voters who do not live in a “traditional dwelling.” As a result, homeless people are now formally able to register and vote in every state.

But homeless adults—of whom there are at least 400,000 nationally—still face a variety of informal barriers. Some states require voters to provide a mailing address when they register. Other states require voters to prove how long they have lived in a voting district, a task that is understandably difficult for homeless people. And again, stricter voter restriction laws—like photo ID requirements—fall particularly hard on the homeless community, who are less likely to have a driver’s license or other forms of acceptable identification.

People with criminal records

Americans with criminal records, especially those with felony convictions, face some of the steepest—and most convoluted—barriers to the ballot box. In fact, a new study found that a record 6.1 million people are barred from voting this year because of felony convictions.

Because voting for people with felony convictions has not been federally regulated, those seeking to register face a patchwork of state voting laws that range from no restrictions (in Maine and Vermont) to a lifetime of disenfranchisement (in 10 states). Ten states also restrict voting for people with misdemeanors. These restrictions disproportionately impact people of color. In Florida, felony disenfranchisement bars 23% of African Americans from voting, and four other states also suppress the votes of 1 in 5 black citizens.

Unfortunately, the confusion and misinformation around state laws can even discourage eligible Americans with criminal records from voting. According to the American Civil Liberties Union, “Many people with past criminal records mistakenly believe they are ineligible to vote.” As a result, many end up staying home unnecessarily on Election Day.

Women

Even though women made up a majority of voters in 2012, voter ID laws are creating new obstacles for them, too. Thirty-four states require voters to present some kind of identification. Roughly 90% of women change their last names when they get married (and often change their names back following a divorce), and many may not realize their voter registration does not match the name on their ID until it comes time to vote. What’s more, women are also more likely to belong to other groups who face barriers at the polls—low-wage workers, seniors, students, and the poor.

Low-wage workers

More than 23 million people—disproportionately women and people of color—work in low-wage jobs. These workers are especially likely to have volatile and erratic schedules, which makes it hard for them to plan to get to the polls. Additionally, only 30 states require employers to give workers time off to vote—and even among states that do provide workers leave to vote, that time off is not always paid.

For workers who subsist on very low wages, the decision to take time off to cast a ballot can result in a difficult financial loss. That may explain the 30-point gap in voter participation along income lines: Less than half of people earning under $30,000 a year voted in the 2012 election, while over 80% of people earning over $150,000 voted. As a point of comparison, 99% of the wealthiest 1 percent of Americans voted.

Transgender people

Transgender citizens have become a vocal voting bloc this election cycle, but stringent photo ID laws threaten their ability to cast a ballot. An estimated 27% of trans people lack identification that accurately reflects their gender, in large part because they face uphill legal and financial battles to update their ID documents. For example, in at least 15 states, trans people are required to show proof of a gender reassignment surgery—a task that is simply not possible for those who are unable or choose not to have the surgery.

People with disabilities

People with disabilities face a wide range of voting obstacles, but chief among them are transportation, lack of accommodations at the polls, and poll workers who are ill-equipped to offer help. A full 30% of people with disabilities are unable to drive, which makes it hard to get to the polls in the first place—particularly for those voters who live alone or in rural areas. Even if they manage to make it to their polling location, a lack of ramps or curb cuts and limited support for voters with vision impairments make it difficult for people with disabilities to vote—even though laws like the Help America Vote Act of 2002 and the Americans with Disabilities Act were designed to improve ballot access. These barriers help explain why turnout rates among voters with disabilities—especially those with cognitive disabilities—tend to be lower than voters without disabilities. In fact, it can be difficult for people with disabilities to even register to vote, since most online voter registrations are not accessible for people with vision-related or cognitive disabilities. All told, these barriers to access could account for as many as 3 million votes.

None of these barriers are inevitable. Most are the consequences of policy decisions, some of which were made with the deliberate intent of disenfranchisement. Election Day gives Americans the opportunity to reverse these laws, and to elect policymakers who will work on behalf of those who don’t always have a voice.

The data suggest the challenge disabled people face in trying to escape poverty.  But there is hope that an emerging bipartisan consensus on disability employment may mark an important step in the right direction.

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Currently, under the Fair Labor Standards Act, a certified “sheltered workshop” can pay disabled Americans less than the minimum wage—sometimes as little as pennies per hour. As a result, approximately 400,000 disabled Americans are paid a subminimum wage, which makes it more difficult for them to work their way out of poverty.

For decades, activists were unable to get even top labor Democrats like former Senator Tom Harkin—a key sponsor of the Americans with Disabilities Act—to challenge this labor law. Harkin, like many Democrats, argued that it was a key policy that helped people with disabilities get needed training for better jobs.  However, studies show that rather than finding higher-quality jobs, the overwhelming majority of these disabled workers spend their careers continuing to earn the subminimum wage.

Ari Ne’eman, who was appointed by President Obama to the National Council on Disability, says the subminimum wage is an outdated idea. “It’s a relic from a time when our politicians embraced other draconian ideas like eugenics,” says Ne’eman. “This is 1930’s thinking.”

Fortunately, a movement to extend the minimum wage to disabled workers has now spread to four states and has reached the federal level as well.

In 2003, Vermont was the first state to eliminate the subminimum wage for persons with disabilities. Instead of paying nonprofits to employ these workers at a subminimum wage, the state invested those funds in wraparound services to help employers accommodate workers with disabilities. Rather than reducing the number of jobs for disabled workers, as critics of the policy had predicted, the employment rate for disabled workers rose—it is now double the national rate.  In the last five years New Hampshire, Oregon, and Maryland have followed Vermont’s lead.

At the federal level, President Obama raised the minimum wage for tens of thousands of disabled federal contractors working in “concessions and concession industries;” and Labor Secretary Tom Perez has said  that he wants all states to eliminate the usage of the subminimum wage to employ persons with disabilities.

Now there is also bipartisan support in both the House and the Senate for the TIME Act, which would ban the subminimum wage and provide funding to help transition disabled workers into mainstream employment.

Republican Congressman Gregg Harper, whose son has Fragile X syndrome, is a cosponsor of the legislation. Congressman Jim Langevin (D-RI), who is paralyzed, and House Republican Conference Chairwoman Cathy McMorris-Rodgers (R-WA), whose son has Down syndrome, are also supporting the push to pass the bill.

“For many of these people, it’s because they have family members with disabilities,” says Allison Wohl, Executive Director of the Association of People Supporting Employment First.  But she says education also plays a role.  “It’s universal—the reaction you get when you tell a hill staffer about the subminimum wage. Their face drops and it’s clear they don’t know what to say.”

Ne’eman hopes that the space created on both sides of the aisle to tackle low wages among disabled workers will lead to more creative thinking about how to raise wages for all workers.

“We call it the curb effect,” he says.  “Just like the [ramp at the] curb also makes it easier for [pedestrians with] a piece of luggage or a stroller.  It ends up helping everyone.”

So far it’s unclear if the legislation is going to move in this Congress, but advocates remain hopeful. These days, even the possibility of Republicans and Democrats coming together to support pro-worker legislation is a rare thing. And many in the disability and labor communities hold out hope that passing this bill will be the first of more victories that lie ahead.

But this is just one aspect of a broadly shared recognition that America’s four-decade-long experiment with mass incarceration has been a failure. We lock up a greater share of our citizens than any other developed nation, at an annual cost of more than $80 billion. We do little to prepare individuals behind bars for their eventual release, yet are surprised when two-thirds return to jail or prison.

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Certain populations—including communities of color, residents of high-poverty neighborhoods, and LGBT individuals—have been particularly hard-hit. But all too rarely discussed is the impact the criminal justice system has on Americans with disabilities.

Over the past six decades, there has been a widespread closure of state mental hospitals and other facilities that serve people with disabilities—a shift often referred to as deinstitutionalization. Between 1955 and 1994 the number of Americans residing in such institutions dropped sharply, from nearly 560,000 to about 70,000. Deinstitutionalization is widely regarded as a positive and necessary development, but it wasn’t accompanied by the public investment needed to ensure the availability of community-based alternatives. As a result, the United States has traded one form of mass institutionalization for another, with jails and prisons now serving as social service providers of last resort.

According to the Bureau of Justice Statistics, state and federal prison inmates are nearly three times as likely—and jail inmates are more than four times as likely—to report having a disability as the nonincarcerated population. One in five prison inmates have a serious mental illness. In fact, there are now three times as many people with mental health conditions in federal and state prisons and jails as there are in state mental hospitals.

Mass incarceration of people with disabilities is not only unjust, unethical, and cruel—it’s also expensive. Community-based treatment and prevention services cost far less than housing an individual behind bars. In Los Angeles County, the average cost of jailing an individual with serious mental illness exceeds $48,500 per year. By comparison, the yearly price tag for providing assertive community treatment and supportive housing—one of the most intensive, comprehensive, and successful intervention models in use today—amounts to less than $20,500, just two-fifths the cost of jail.

In addition to facing disproportionate rates of incarceration, people with disabilities are also especially likely to be the victims of police violence. Freddie Gray, Eric Garner, Kristiana Coignard, and Robert Ethan Saylor—all individuals with disabilities whose tragic stories of being killed at the hands of police officers garnered significant recent national media attention—are but four high-profile examples of a sadly commonplace occurrence. While data on police-involved killings are limited, one study estimates that people with disabilities comprise between one-third and one-half of all individuals killed by law enforcement. And according to an investigation by The Washington Post, one-quarter of the individuals shot to death by police officers in 2015 were people with mental health conditions.

What’s more, once people with disabilities are incarcerated, they are often illegally deprived of necessary medical care, supports, services, and accommodations. A recent report by the Amplifying Voices of Inmates with Disabilities (AVID) Prison Project highlights numerous examples of inmates denied access to needed medications, prosthetic limbs, and hearing aids; individuals with cognitive impairments unable to access medical treatment because they were unable to fill out request forms; inmates who are deaf missing medication delivery because of lack of accommodations; inmates who have sustained injuries due to lack of accessible toilets and showers; and more.

Prison and jail inmates with disabilities are also at particular risk of mistreatment at the hands of guards and other correctional employees. A 2015 report by Human Rights Watch documents an epidemic of “unnecessary, excessive, and even malicious use of force” in U.S. prisons and jails that targets inmates with mental health conditions, through harsh tactics such as chemical sprays and electric stun devices; strapping of inmates to beds and chairs for days at a time; and physical violence resulting in broken jaws, noses, and ribs, as well as “lacerations, second degree burns, deep bruises, and damaged internal organs,” and even death.

Moreover, many inmates with disabilities are held in solitary confinement as a substitute for appropriate accommodations. This practice continues despite a large and growing body of research documenting that even short stays in solitary can have severe and long-lasting consequences for people with disabilities, and particularly those with mental health conditions. Even individuals who had not previously lived with mental health conditions experience significant psychological distress following solitary confinement, as the tragic but all-too-common case of Kalief Browder brought to light last year. Browder died by suicide after being held for nearly two years in solitary confinement in Rikers Island on charges, later dismissed, that he had stolen a backpack.

Seventeen years after the landmark Supreme Court decision in Olmstead v. L.C.—which held that unjustified segregation of people with disabilities in institutional settings is unlawful discrimination in violation of the Americans with Disabilities Act—it is long past time that we brought the mass incarceration of people with disabilities to an end.

First and foremost, reversing this shameful trend will require meaningful investment in our nation’s social service and mental health treatment infrastructure to ensure availability of community-based alternatives. That way, jails and prisons will no longer be forced to serve as social service providers of last resort. But it will also require including disability as a key part of the criminal justice reform conversation taking place in Congress, and in states and cities across the United States.

Editor’s Note: A new report by the Center for American Progress, Disabled Behind Bars: The Mass Incarceration of People With Disabilities in America’s Jails and Prisons, will be released at a White House Forum on Monday, July 18. A livestream of the event is available here.

Tracey: And I’m Tracey Ross.

Rebecca: So, Tracey, before we dive into what today’s episode is gonna be about, I thought we should do the number of the week.

Tracey: All right, let’s do it.

Rebecca: Ready?

Tracey: I’m ready. I’m burning up.

Rebecca: She’s ready! She’s so ready! You are so ready! All right.

Tracey: Give it to me.

Rebecca: The number of the week is… 25.

Tracey: Okay. So, since I was involved in the planning of this episode-

Rebecca: I didn’t really hide the ball there, did I?

Tracey: No. I’m gonna go out on a limb and say that it’s the number of years since the Americans with Disabilities Act was passed.

Rebecca: Ding, ding, ding! We have a winner. Yes, indeed. It is the 25^th anniversary of the ADA. It happened just this past weekend. And actually we’ve been celebrating all week long over at TalkPoverty.org with what we’ve been calling talkpoverty and disability week, because the intersection of poverty and disability is all too rarely discussed.

Tracey: We’ve got some great pieces, some personal testimonies, some work by advocates in the field that are working closely on this issue, so please check out the pieces they’re fantastic. They’re on TalkPoverty.org.

Rebecca: Greg will really appreciate what a solid plug we’ve just put in.

Tracey: You’re welcome, Greg.

Rebecca: But we also have a fabulous lineup on today’s show – and, in fact, many of the folks who have been contributors to TalkPoverty and Disability Week are actually gonna be guests on our show today. So we-

Tracey: I’m excited. I know! I was like, “wow!”

Rebecca: I’m excited too. I should have paused for excitement there.

Tracey: So who do we have?

Rebecca: We have Alice Wong, she’s the founder of the Disability Visibility Project, which is a partnership with StoryCorps.

Tracey: We also have Michael Morris, executive director of the National Disability Institute.

Rebecca: Courtesy of the Vera Institute, we will also be featuring some remarks from attorney and civil rights activist T.L. Lewis. Also the founder of HEARD, an important organization that does advocacy on behalf of deaf individuals. But first we’re joined by Talley Wells, Director of the Disability Integration Project at the Atlanta Legal Aid Society.

Tracey: You’re listening to TalkPoverty radio. I’m Tracey Ross. I’m joined by Talley Wells, Director of the Disability Integration Project at the Atlanta Legal Aid Society. Thank you for joining the program.

Talley: Thank you for having me. It’s very exciting to be here. And happy anniversary of the Americans with Disabilities Act.

Tracey: Yes, and happy 25^th anniversary back to you. And we’re excited to be commemorating this anniversary on today’s show. So I want to start out by asking, what is the significance of the ADA in the work that you do?

Talley: The ADA is at the heart of the work that I do. My work is based on the United States Supreme Court’s Olmstead decision. Olmstead was decided in 1989; it is the most important civil rights decision for people with disabilities. It’s often called the Brown v. Board of Education decision for people with disabilities, because it is a decision that is transforming our country’s infrastructure for people with disabilities from a system that was all about institutionalizing people – separating them from society – especially here in Georgia, where we had thousands and thousands of people in institutions – and instead, providing them the accommodations and supports so they can live full and meaningful lives in the community, so they can work and live in their own homes, and be as much a part of the community as every other person. So the ADA is at the heart of the work I do, and the reality is just because the U.S. Supreme Court issued a decision eight years after the ADA was passed and told the country that it needed to provide supports and services for the community, that’s still not happening. And so my work is about really realizing the promise of this extraordinary Supreme Court decision, and this extraordinary Act, the Americans with Disabilities Act.

Tracey: And you wrote this week for TalkPoverty.org about these very issues – the ADA and the Olmstead case. And you say that people are still segregated into institutions and excluded from participating in society. In what ways have you seen this occurring?

Talley: Well, just think about it. And, I’m sure, in the neighborhood that you are in – and every community across this nation – we have nursing facilities. And nursing facilities are basically institutions that have a lot of people who have disabilities who could be living in the community if we had a much more robust system of homecare and support, so that people don’t actually have to go into a nursing facility – and that’s just one example. In Georgia, we have institutions that were created in 1842, and still exist today – where people with developmental disabilities and people with mental illness are confined, many times for years and years. Now that’s changing in Georgia because we’ve been at sort of the forefront of Olmstead because of the Supreme Court case, and because the Justice Department came back in 2007 through to the present, and has really sort of enforced Olmstead here. But we’ve had a long way to go, and it’s systems that exist not only here but throughout the country. I was recently in New Jersey, where there are thousands of people who are still in institutions.

Tracey: And we’re using, you know, ADA and Olmstead back and forth. Can you actually just explain for our listeners who might not be familiar with the law and with the case, how these relate to one another?

Talley: I would love to. So the ADA – what most people are familiar with – the Americans with Disabilities Act – are – is the fact that the Americans with Disabilities Act requires either a reasonable accommodation or a reasonable modification. And basically what the ADA says is that if someone wants to work in a job, then the employers should provide some sort of modification or accommodation so they can get equal rights to that job as other people. It’s also thought of with respect to architecture and infrastructure so that if a wheelchair ramp would enable someone to get inside a courthouse, or get inside a school, or get inside their home or workforce. And that’s sort of what people think of with the ADA and the reasonable accommodation is at the heart of the Olmstead case. If we step back, and look at when the Americans with Disabilities Act was passed, Congress issued a number of findings. And in those historical findings, which Congress made at the very beginning of the Act, Congress said in this country, people with disabilities had historically enough to that time of the Act, in 1990, been discriminated against and segregated. And one of the ways that they had been discriminated against and segregated was by institutionalizing them. Essentially, if you institutionalize someone, you are separating them from everyone else. You are also making it very difficult for them to go to the store, for them to have a job, for them to be part of the day to day life that everyone else is a part of. And so, when Congress made those findings, they then said that people with disabilities must be included as long there is a reasonable accommodation. And “reasonable” is a word that’s used throughout the law, and most people think of it with respect to “reasonable doubt,” but pretty much – most of the law has some sort of reasonableness component and that is, essentially: “what would an objective person think is reasonable?” And so, whatever that is, then you apply it with the combination, so: how can you accommodate someone to include them? And when the Olmstead case was brought on behalf of two women, Lois Curtis and Elaine Wilson, who were here – just outside of Atlanta, Georgia. And they had repeatedly been held in Georgia Regional Hospital in Atlanta, which is our psychiatric hospital locally. And their doctors said they were perfectly capable of living in the community, but they needed support. And the problem was Georgia only provided those supports in the institutions. So if they were gonna get the supports they needed, they had to essentially be segregated from society. So the argument that happened in the Olmstead case was a simple “reasonable accommodation” argument – that it would be a reasonable accommodation for the state of Georgia to enable them to live in the community, and provide the supports they’re providing to them – just not in the institution, but in the community. And with that simple statement by the United States Supreme Court, the walls of segregation that have separated so many people with disabilities not only here in Atlanta – but in every city, every state in this country – have begun to come down.

Tracey: And yet, without enforcement the ADA and what Olmstead provided would be a theoretical framework. So, what is the role of an organization such as yours in ensuring that these rights and protections are actually experienced by people with disabilities?

Talley: That’s been one of the great learning experiences for me in this work. I – go to law school, and you see these Supreme Court decisions, and you learn all about them, and you sort of think that that – that will change things. But if you really spend your time looking at it, and remember what happened with Brown v. Board of Education, just because you have the Supreme Court say something, doesn’t mean that a state’s actually gonna do what the Court said. Going back to Brown v. Board of Education, and Olmstead is very much the same thing. You had the states fighting all the way up to the Supreme Court, and then the Supreme Court turns around and says “State, you have to do it.” And so the state that has fought it all the way up to the highest court in the land, now has the obligation to carry it out – and so are they actually going to do what the Court has said when they’ve been fighting it all along? What we saw, of course, with school integration was “no,” that the states simply were not going to carry it out, and that the courts had to get more and more involved. And with disabilities we had sort of the same experience. In 1999, we had the decision; the state of Georgia decided to do a lot of committees. They basically created a blue ribbon commission, they created a Governor’s commission, to look at Olmstead. They had the legislature do some findings. They did a lot of planning, but very little implementation, of how the state was gonna actually provide the reasonable accommodation – not just to Lois and Elanie, who were the two plaintiffs, but to all people with disabilities who were confined in institutions. And then what really became the impetus for change in this state was that we were involved in the last month of cases and got The Atlanta Journal Constitution involved, which is our newspaper here, and they did a huge expose on all of the problems inside of the hospital. They found over 100 people who, as they put it, “would have lived but for the fact that they were in the hospital,” and who died in the hospital. And there were all sorts of incidences of abuse and neglect. So while we were finding these cases – and the role of our organization as a legal services organization and the role also of protection advocacy organization is to represent individuals. But we needed additional help, and the newspaper article brought the United States Justice Department, and ultimately resulted in a settlement in 2010 where Georgia now not only had to serve Lois and Elaine but this settlement was a statewide settlement that Georgia was finally gonna close these hospitals that have been around since 1842 – not only close them, but provide the supports and services to the community for individuals throughout our state. And this settlement that happened here in Georgia – similar settlements are happening across the country, because the Justice Department’s Civil Rights Division has now made Olmstead one of its number one priorities. And if you go on the Justice Department’s Olmstead website, you can see cases are happening in pretty much every state in the land to ensure that everyone with a disability doesn’t have to live in an institution, but can live full and meaningful lives in the community.

Tracey: And I really appreciate you drawing some of the comparisons between the Olmstead case and Brown v Board and something we’ve talked about a few times on the show is the need for other social justice movements to include a disability lens. So whether it’s, um, you know a racial justice cause or LGBT rights there are obviously in all of these social movements people who experience disability. How do think that other movements can do a better job of incorporating the disability lens?

Talley Wells: There’s a woman named Kate Gainer who lives here in Atlanta and she was part of the civil rights movement for African Americans and people of color. She says that when the laws changed, and society changed, she was able – she had the right to get in the front of the bus but it wasn’t until much later, and the push from the disability rights movement that she was able to actually get on the bus because she uses a wheelchair. Every single group- socio-economic, ethnic, racial, age- has people with disabilities, and they are vibrant parts of that community. Yet many times they’re still excluded. I had a friend come and meet with us for, um, a gathering who is a disability rights advocate and uses a wheelchair. And we realized that in this group of fairly progressive people, twenty people, she could not go to a single one of those peoples house because she could not get into their house. That’s what it means to be excluded, to not go over to your friends’ houses, to not be able to get into the workforce. So, and another favorite example I have is there is a museum called the Disability Right Museum Right Museum on Wheels that has been part of this extraordinary celebration of the American’s with Disabilities Act that is traveling across this country to celebrate the twenty-fifth anniversary. And in that museum there is a letter from President George H.W. Bush who signed the Americans with Disabilities Act and he said that he was extremely proud, that is one of the most important things he did in his administration but it really came to his understanding of how important this was, and what it meant to have simple things like curb cut when he became someone who uses a wheelchair. And so that’s something he wrote in March of this year and it shows that President Bush, I’m sure, never thought that he would be a person with a disability. But it can happen to any of us. There are people with disabilities that have been President, that are part of every movement and it is so integral to include the disability rights movement. I enjoyed watching the celebration of the civil rights movement, at the LBJ, the Lyndon Baines Johnson, anniversary of the Civil Rights Act and the disability rights community did a great job of talking to the LBJ library about making sure that they included people with disability. And that wasn’t necessarily the way the program was going to be at first, but they changed it because the disability rights community stood up and made it clear that that’s absolutely a part of the civil rights movement.

Tracey: And one way that you’re disseminating more information about disability rights and getting resources to advocates is through your new website, Olmsteadrights.org. Can you tell me what prompted the creation of this site and what resources does it provide?

Talley: I’m so proud that you have brought this up, because we are so proud of Olmsteadrights.org. OlmsteadRights the impetus for the creation of this was that we have this amazing transformation that’s happening throughout the country, changing from a a nineteenth century system of segregation and institutionalization to a twenty-first century system that is not even a system – it’s an understanding that people with disabilities don’t have to be in institutions they can live full and meaningful lives in the community. Of course most people with disabilities don’t live in institutions, but there are so many of them that do and that even though this whole transformation is happening, so few people know about it. So we decided to do three things: We wanted to tell the story of people with disabilities who had been in nursing homes, who had been in institutions for developmental disabilities, who are now living full and meaningful lives in the community. We also wanted to tell the stories of people who were able to avoid going into the institutions. So we have lots and lots of stories, one of my favorite stories is my former client, Harold Anderson, who is now my boss because he’s on the board here at, at the Atlanta Legal Aid Society. We advocated for him, we had a mediation set up in the nursing home where he had been living, he had lived for I think seven years in various nursing homes, and we got him out, he’s now not doing all sorts of things in Atlanta including being on the executive committee of our board. So we wanted to tell stories like Harold’s- of real people- and we also wanted to ensure that self-advocates, people with disabilities, families of people with disabilities could advocates for themselves based on Olmstead. And third we wanted to provide legal tools and so we have a lot of legal tools, legal pleadings, legal outline, for lawyers so they can do Olmstead cases, and our focus is legal services organizations, protection and advocacy organizations, that do this work every single day. But it’s also for lawyers across the country to make sure that anyone who is either at risk of going into an institution or who is in an institution can live in the community. So I hope everyone will come to Olmsteadrights.org, the other thing we have in it is a history videos, we have the oral argument from the Supreme Court case, we’ve got a lot of resources so people can really come to understand the Olmstead case and how it’s transforming the country but how much further we have to go.

Tracey: Our guest is Talley Wells, director of the Disability Integration Project at the Atlanta Legal Aid Society, thank you for joining us.

Talley: Thank you.

Rebecca: Next up, we’re gonna play some remarks for a recent event hosted by the Vera Institute, on the intersection of criminal justice and disability. And specifically, we’re gonna play some remarks from TL Lewis, the founder of an organization called HEARD, Helping Educate to Advance the Rights of the Deaf.

TL: I begin every discussion that I give, that I present, by centering the space, and that means uplifting the names of people who are no longer with us, making sure that we all recognize that we’re not talking about numbers, we’re not talking about statistics, but what we’re talking about are human lives. So I will begin today, like I begin every other day, not with scanning the building upon which we all sit, or stand. Tanesha Anderson, Freddie Gray, Anthony Hill, Ezell Ford – these are African American people with disabilities whose lives were cut short by law enforcement. News media and advocates alike erase parts of their identities; they often mention that they are black people who have been murdered by police officers, but what they don’t often mention is that these are people with multiple marginalized identities, and those marginalized identities all together are what led to their untimely murders. Their lives mattered. Their black lives mattered. Their disabled black lives mattered. And that’s important for us to be able to state in this space. Today, I want to propose to you all something that some people might call lofty, others might call revolutionary- others might say it’s impossible. But before I begin, I want to remind you that those same words were used with advocates like the Honorable Senator Harkin as related to the ADA 25, 30 years ago when it was conceived of. So I want you all to dream with me for a while. Let’s explore what’s possible, and not worry about what exists now. Let’s think outside of the box, outside of the realm. So that’s what I’m challenging us to do today. So stay with me. So here’s what I propose: I’m proposing an end to police brutality and mass incarceration by engaging in intersectional disability justice advocacy that – because of its historic and present work related to deinstitutionalization and creative community-based solutions – is already steeped in creative – creative and innovative, transformative deinstitutionalization policies and practices. And at its core, that’s what mass incarceration is – it is institutionalization, and it’s important to name that as well. So here are the statistics and information that provide a framework for my proposal. I’m just gonna run down some brief statistics that are available online. Children with disabilities are three times more likely to be placed in foster care than those without disabilities. Children with disabilities are four times more likely to be living in poverty than those without disabilities. 65% of boys and 75% of girls in juvenile detention have mental illnesses. Children with disabilities are 50% more likely to drop out of school than those without disabilities. Black children represent 18% of the preschool enrollment population but 48% of those preschoolers – preschoolers, yes – were receiving more than one out of school suspension. The larger question, of course, is why are we suspending preschoolers, but the second is, okay let’s talk about racial disparity and disability disparity in those – in those numbers. Children with disabilities enter the juvenile system at 5 to 6 times the rate of youth who do not have disabilities. Up to 85% of children in juvenile detention have at least one disability – and of that 85%, only 30-some-odd percent of them are receiving access to services in their schools pursuant to IDDA which Dara mentioned earlier. 60% unemployment rate which was mentioned by the Honorable retired Senator, and disproportionately underemployed or not employed within the deaf and disabled communities. So, those are the kind of key statistics that should paint the- the- the broad strokes and these last three are super critical, so stay with me. The largest mental health providers in the nation are jails – Cook County in Chicago; Riker’s Island in New York; and LA county jails. Blacks and Latinos make up 30% of the US population, 60% of the incarcerated population, and now 20% of our population here in the United States, of course, has disabilities. We represent 20% of the population that is in the United States. We represent – studies have shown – 60-80% of those who are incarcerated in jails and prisons across the nation. So at the end of the day what that means is people with disabilities are the largest minority population in jails and prisons. Period. If ever there was a crisis of institutionalization with people with disabilities, that crisis is now. It’s impossible to address the issues of mass incarceration without addressing it with a disability and deaf justice lens.

While many have begun the important discussions surrounding the harms visited upon so many communities of color and different communities, religious affilitations and so on and so forth – our native nations. There’s been, you know, a very – a vast chasm of discussion about disability. And there is absolutely right – those discussions that do center on disability and criminal justice tend to focus on very specific portion of people with disabilities to the detriment of other disability communities which is highly problematic. (26:13) For example, I’m gonna skip some stuff because I can come back to it later for example people who are deaf, diabetic, epileptic, you mentioned these things, have actually been murdered by police officers, because people don’t have intellectual disabilities, don’t have mental health conditions, are not experiencing crises, but have physical conditions that render them, because the police officers are not utilizing the ADA, mitigating, or taking time to stop before they resort to lethal violence against our community members, literally are being murdered because they have a disability, so we have to state in this space, and our jails and prisons are literally overflowing with people with disabilities, out in California and many other states. We’ve had judges actually ruling we need to de-incarcerate specific prisons because they are literally overflowing with folks, so that’s kind of the large lay of the land and despite this long standing federal disability rights laws that we all know of and love and cherish- the ADA, the rehabilitation act- which so many people before us spent so much of their lives invested- their hearts, invested- in creating these laws, what we have to acknowledge is that laws alone do not create, we cannot legislate social, cultural, and organizational and agency change. We have to take further action, and that’s kind of where we are today, and I’ll give you some “for instances” right? So, for instance, although it’s rarely discussed deaf people and people with disabilities are often wrongfully convicted because of lack of access to police officers, attorneys in the courts, then once they’re institutionalized they’re physically and sexually assaulted and subjected to depressing isolation and other forms of exploitation. I’ve worked for a decade on more than fifteen death wrongful conviction cases. The majority of these cases have uncanny similarities, in at least two respects- there are many others but I’ll name two- private police departments fail to provide reasonable accommodations in terms of communication. Detectives, attorneys, and judges alike- the entire system is guilty. Let’s be clear. We’re not blaming police, we’re not blaming just- the entire system is ableist and audist and we need to name that in this case. Ableism is discrimination based on your ability; audism is discrimination based on your ability to speak or hear, um, as opposed to sign and listen with your eyes or listen with your hands if you’re a tactile sign language user. We can’t prioritize certain kinds of abilities over other abilities and that’s really important also to name. Similarly, deaf, deaf blind, deaf disabled, and hard of hearing prisoners customarily experience discrimination and terrible abuse in our prisons, punished for failure to obey commands that they can’t hear, using sign language to communicate, for failure to follow rules that were never conveyed, for missing counts that they were never aware of, for filing grievances about these persistent inequities, they’re denied interpreter services, deprived of access to medical and mental health care services in the prisons, denied access to education and reentry programs, cut off from access to the most basic human interaction, all of this coupled with inaccessible telephone systems in the prisons, which I will get to momentarily. I recently submitted, testimony to the Senate, they had us- their second ever hearing on solitary confinement and I shared with the Senate and the world- hopefully folks are actually reading our testimony- that the solitary- the use of solitary confinement against people who are deaf and people with physically disabilities is- let’s be clear- solitary confinement is torture for anyone, period. It should not be used against anyone in any elongated way and I would argue it shouldn’t be used at all but that’s a whole other revolutionary idea that’s not the point of discussion today. But what we do know is that we have deaf people who within weeks, sometimes hours and often in months, literally try to kill themselves as a result of the deprivation that happens, while they are experiencing solitary confinement at the hands of our government. That is in our name. We are responsible for that. There’s a large discussion about solitary and people with mental health. Where’s the discussion about solitary and people with other disabilities? And our children, we- the ACLU did a wonderful job of recently bringing, shedding light on the issue of putting our babies in boxes in solitary confinement and what that does to them mentally and otherwise but there is not a discussion about physical disabilities and solitary confinement. We should be fighting for all of us at once, not one thing at a time, not only mental health but not deaf. There is no reason a deaf person or any person with any other disability, which is the vast majority of our prison population, should be in solitary confinement. And that’s what we need to be saying as advocates, not “let’s not put people with mental illness in pri-, in solitary.” So, I’m gonna hold on that because I’ve got more I wanna share, alright. Finally, despite the existence of these wonderful laws which we all support and uphold, will soon we, my organization -an all-volunteer non-profit organization- will soon be on our fourth year of advocacy just to get telephones for people who have communication disabilities in prisons across the nation. As of last month, eight prisons across this nation had videophones. Eight. That means for decades countless deaf people, deaf, deaf blind, deaf disabled, hard of hearing, have had no access to their loved ones, their babies, their families, their attorneys. And we know that people who are deaf actually experience the least access to the justice system in the first instance, so why don’t we make sure that they can at least communicate effectively once they’re in the jails or prisons across the nation? This is the kind of advocacy we need to see from folks. So right now we’ve got criminal justice reform and prison advocates who are really finding ways to drastically decrease mass incarceration. They’re proposing things like capping sentences, legalizing certain drugs, etc., etc., alternative courts, what I’m proposing, is that this, the situation of mass incarceration is, has grown way too large and that those things are not going to work; we will still end up, even if we were to release all of those people in these proposals, with mass incarceration levels above what we had in the 1980s. So what I would like us to do is to think about a justice system that- what would it look if we applied disability justice principles, right? And so here’s my alliteration of the day, and this is what you should take home with you. Our justice system could decriminalize disability, deescalate law enforcement situations for people in crisis, divert all people with disabilities away from jails and prisons, demand disaggregated data collection on disability in jails and prisons, deinstitutionalize those of us who are presently trapped in the clutch of the system because society has failed for so many decades to provide meaningful support and accommodations for people with disabilities in the first place. Many people who are presently incarcerated, um, are incarcerated now for behaviors that forty years ago would have landed them in a psychiatric facility. That’s important to state. We have to start re-envisioning and reimagining criminal justice. Criminal, what is criminal? Right, because criminality is a social construct, and what is justice? And what could that look like if we actually applied a racial justice, a trans justice, a disability justice lens? I think that that is the way we can advance the rights of all of us and we really need to recommit ourselves to the long and bitter struggle for justice as the honorable Senator mentioned, so thank you.

Rebecca: This is TalkPoverty Radio on the WeAct Radio network. I’m Rebecca Vallas, and for a very special episode commemorating the 25^th anniversary of the Americans with Disabilities Act, or the ADA, I have with me Alice Wong. She is the founder and the coordinator of the Disability Visibility Project, which was done in partnership with StoryCorps. Alice, thank you so much for joining TalkPoverty Radio.

Alice: Thank you so much for having me.

Rebecca: So I understand that you and I were both at the White House event commemorating the 25^th anniversary of the ADA. I didn’t see you, but I understand now that you were there in a special way.

Alice: There’s a really awesome device, called BeamPro, and it’s basically a teleconferencing device that allows a person to use their left hand at home and they can operate a robot. So it’s kind of like people can see me through the monitor, and I’m moving around in the Red Room and the Blue Room and the East Room. I couldn’t believe it. It was thrilling to be in the White House, and to actually say hello the President.

Rebecca: So, you – you were the first person to ever use this BeamPro technology in the White House. Is that right?

Alice: I believe so. That’s what they told me at the White House. So it was a huge honor, and really – you know- an adventure to try to use it and to make sure it all worked. Kind of sort of similar of the President and me side by side, virtually.

Rebecca: It’s pretty amazing.

Alice: Well, this is life in 2015, now. I think there’s a lot of amazing interest in technology and things that are available online now that really give people with disabilities a way to participate in ways that they haven’t before, and one thing that I maybe should I mention: so many amazing people with disabilities using Twitter and Facebook, makes me think about when I was younger – in the pre-Internet days – and, wow, if I had that as an option, the world would be so different.

Rebecca: Well, in full disclosure to our audience: that’s how you and I know each other is through Twitter.

Alice: Yeah, it’s pretty funny.

Rebecca: So, tell us a little bit about the Disability Visibility Project you coordinate in partnership with StoryCorps? What is that project about and how did it come into being?

Alice: The Disability Visibility Project is kind of like a grassroots campaign that I launched last year, and it’s kind of a one year project, kind of encouraging people with disabilities to stand a part of this lead up to the really landmark 25^th anniversary of this Americans with Disabilities Act. There aren’t enough stories – people with disabilities telling their stories on their own terms, and it’s kind of an easy way to really get the community involved. And Storycorps is a wonderful national nonprofit located in Atlanta, Chicago, and San Francisco, and they have a mobile tour that goes throughout the country. And we’re just trying to encourage people from all over the country to try to participate and just tell the stories of their lives and what they care about. And now with the StoryCorps app, people don’t have to travel. They can just use their smartphone and record their story. There are a lot of different ways.

Rebecca: And tell us about a few of those stories that you received through the Disability Visibility Project. I think you have some actually for us on tape that we’ll be able to play for our listeners.

Alice: A lot of people talked about education in their career lives. And one thing that has been clear that – in some of the interviews, is the notion of economic self-sufficiency. People who grow up having a disability – how they need to take care of themselves. And what they need to do in order to take care of themselves. In many ways, they need education, earning money, working hard, and sometimes, there are a lot of policy areas that come along with that, so that’s been in some interviews so far.

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Rebecca: And let’s play a clip of one of those interviews.

Speaker: If you don’t have a disability, you know, you basically are encouraged to always present yourself in terms of what you can do, that’s your identity- hopefully, if you have a healthy sense of self. The things that you can’t do are simply the things you haven’t learned how to do yet, or that you didn’t really care about in the first place. I feel like the message that a person with a disability gets is: your identity is based on what you’re unable to do. It’s how well you can argue for not being able to do something.

Rebecca: Alice, now I understand that several of the interviews you did for this project were on the subject of people with disabilities fighting for economic justice. Let’s hear a clip from one of them.

Speaker2: Well, and I think the next frontier – and I know there are people working on this, and talking about it, so it’s like some nuanced idea – it’s really economic justice for people with disabilities. I mean, we are among the poorest of the poor in this country, the most unemployed or underemployed demographic. And you know I think economic justice is really the next fight – and it’s the fight now, right, and it’s the fight in the future.

Rebecca: Something we talk a lot about on TalkPoverty radio is how disability is both a cause and a consequence of poverty. What are some of the ways in which we need to see policy change building on the successes of the Americans with Disabilities Act and other pieces of critical legislation to really move forward and realize the goals of those pieces of legislation?

Alice: One of the easiest things in my mind – and easy in my mind, but really difficult, I think, politically is really the asset and income limitation for people with disabilities to receive either SSDI or Medicaid. For so many people with disabilities, these are major disincentives towards working. Whether or not they have the drive, the talent, and the opportunity to work, these kind of barriers really keep people with disabilities who want to work, who want to pay taxes, earn income, and actually create access and wealth and contribute to society and it’s punitive for many of us, in modern community-based services, because there are linked with Medicaid, and all of these aspects, income limitations, are really hampering a lot of disabilities – younger people, who want to work, are wanting to enter the workforce, but cannot.

Rebecca: And where can our listeners find more about the Disability Visibility Project?

Alice: We have a website called disabilityvisability.com. We also have a Twitter, at D-i-s-v-i-s-i-b-i-l-i-t-y.

Rebecca: It’s a doozy to spell. Well, thank you so much Alice Wong for being on TalkPoverty radio today. This has been – this is a really special episode for me in a lot of ways and I’m really glad you were able to join us for it. Alice Wong is the project coordinator for the Disability Visibility Project, a community partnership with StoryCorps.

Alice: Thank you so much Rebecca.

Rebecca: You’re listening to TalkPoverty radio. I’m Rebecca Vallas. And to continue this special ADA-at-25 episode of TalkPoverty Radio, I have a very special guest with me – Michael Morris. He is the executive director of the National Disability Institute. Michael, thank you so much for joining the program.

Michael: Thank you for bringing me on and I look forward to the conversation.

Rebecca: Well this is obviously a wonderful and celebratory week, but a point that you and other people have made is that we really still have a lot of our work cut out for us. For example, one tragic sentence that I write and say routinely is that “disability and poverty go hand in hand.” And this is something you and I have discussed at length over the years- that 25 years after the ADA, this is still the case. Why is this still the case?

Michael: I think there’s no single reason. I think attitudes change slowly. I think that there’s discrimination in this country still that prevents many people with disabilities from being employed. The estimates vary of anywhere from 50-80% of the disability population is not in the labor force. We know people with disabilities are two times more likely to be living in poverty than their non-disabled peers. But I think the real issues that confront us is a combination of policy and practice.

Rebecca: And, going back to the poverty rates of people with disabilities even who are working, something that is perhaps less well known but really is quite staggering is that poverty rates are disproportionate for people with disabilities even when you compare part-time workers and full-time workers with and without disabilities. Maybe part of this is about the disability pay gap – we’ve got new research finding that for workers without disabilities who are paid a dollar, workers with disabilities are paid just .68c on that dollar. Do you think that maybe these – how do you explain these disparities?

Michael: Well, it’s so interesting. That’s really some new research which compounds the challenges people with disabilities face. So those who have been fortunate enough to get into the workforce find their pay gap than women, racial and ethnic minorities. So, what does all that mean? It means that, culturally, we have a long way to go for people with disabilities to truly be accepted for their talent, for their value, for their contributions to communities, to the workplace, and to our economy.

Rebecca: Now, switching gears a little bit, it’s not just a story all about income poverty disparities. The National Disability Institute, which you lead, has also looked at how people with disabilities are doing when it comes to having savings – even just a little bit of savings. What have you found there?

Michael: Yes. We’ve been able to analyze data from several major studies- one by Finra, one from FDIC- surveying households. And here again we see some stark contrasts. When people with disabilities were asked do they have enough funds for any kind of financial emergency – car breaks down, could be a healthcare emergency – people with disabilities were 2 to 3 times more likely not to have any rainy day fund, any emergency fund. So, it’s more than the income gap. It’s this lack of savings. And, we investigated further and see that 80% of people with disabilities have no retirement account, have not ever seen a person to talk about any financial planning. So, we really are at a point in time, that I would have expected when – frankly, I was there at the White House, back on the lawn, with about a thousand others, when President Bush signed the ADA, and I don’t know if I could have seen the future 25 years later, but my expectations- and I think so many people in the disability community, their expectations as well – that promise of the ADA, in addition to promoting independent living and community participation, was also about advancing economic self-sufficiency. We’ve got a long way to go.

Rebecca: And it isn’t just retirement accounts, right? Some of the work you guys have done has also found that almost half of households headed by working-age people with disabilities are either unbanked – have no bank at all, no mainstream financial inclusion – or underbanked. Can you talk a little bit about that?

Michael: Yes, that information came from the new study we did with FDIC that almost 1 in 2 individuals with disabilities heading households were either unbanked or underbanked – and if that isn’t a serious problem enough by itself, the secondary problem was people with disabilities as compared to people without disabilities were more likely to use alternative financial services- kind of a fancy name for pawn shops, and check cashing places, predatory lending operations, that – on top of – let’s kind of add up the pieces here. If you’re working, you’re probably earning less on the dollar from new research. You’re also not in the financial mainstream. You’re also using alternative financial services. And you’re less likely to be planning for the future in terms of retirement, or down the road – even to have emergency funds. So if there’s anything that I would stress to people thinking about “well, we’re at 25 years, where do we go?” I think the compass couldn’t be pointed more directly than on this issue of poverty and disability. It’s unacceptable and we know we can do better.

Rebecca: So what can we do to increase the numbers of people with disabilities who are included in that financial mainstream?

Michael: Well, we’re working with 19 community partners in 6 cities in a project called “Roads to Financial Independence,” where we’re providing on a 1-to-1 basis opportunities for financial education and financial coaching to individuals with disabilities who want to return to the workplace, or get into the workplace for the first time, are already working- is help them assess their financial capability and status, set financial goals, and look at – if they have no credit, how do you establish credit; if they’re heavily in debt, how do we help them reduce debt; how do we help them establish a savings account? We do expect, over the next several years, to be working with several thousand individuals with disabilities, and learn – really, for the first time – how can the financial world and the disability world and all kinds of community partners, work really well together and what kind of results can we then achieve?

Rebecca: And in your TalkPoverty column this week, you mention that there are a number of recent policy developments that offer concrete opportunities to help bring people with disabilities into the financial mainstream. And specifically, you mention the ABLE Act, legislation that was passed last year. Can you tell us a little bit about the ABLE Act – what it does, and maybe if there are ways in which you don’t think it goes far enough?

Michael: Sure. ABLE Act is, to me, a historic piece of legislation. Took 8 years to get through Congress, and basically it sets up for a certain number of people, who will be eligible – people with disabilities – to establish tax-advantaged savings accounts. It’s somewhat modeled after the 529 college savings accounts, but with several important differences. Number one: the use of the money in the account is not limited just to paying college tuition, and housing, and books. It covers the range of needs that people with disabilities face, often as an extra cost of just living a better quality of life, that’s related to transportation, employment, education, purchase of technology, extra healthcare costs. So it really covers a lot of ground to change a person’s outlook on what they can do. But it even does more than that. It allows, for the first time, for people on SSI to get past the asset limit we talked about a few minutes ago – of $2000 for an individual, $3000 for a couple. No federal public benefit that is means or resource-tested will be able to count the ABLE account that would disqualify someone from being any longer eligible for that public benefit. So in those several ways, this is really a historic change in thinking. Now, unfortunately, it is limited to only a segment of the disability community. It will only help people whose age of onset of disability was age 26 or younger- that leaves out millions of people – and it also restricts the amount of money you could put aside in a savings account annually to $14,000. Now, over time one is going to accumulate more money, but this is so important because, to me, it also is the first time in public policy where Congress is recognizing, “wait a minute. People with disabilities have extra costs other people don’t have.” Sometimes just to get out of bed with personal assistance services. Sometimes it’s technology which will help them speak, or read. Sometimes it’s other assistance related to employment, or transportation. These are costs that could be covered as part of the money set aside in ABLE account. So it’s pretty significant, and I think – I hope – we’ll continue to be able to build on it, expand the population who’s eligible. But, more than that, I really see over the next 5 years, a potential 5 million ABLE accounts opened across the country. What’s exciting about that to me is it sets up a culture of savings, which we didn’t have. It takes away the fear of losing public benefits because those asset limits related to an ABLE account, an ABLE account will be excluded. It really allows a person to dream, and I consider an ABLE account as almost a down payment of really – a first step toward freedom, and independence.

Rebecca: And another policy you mention in your TalkPoverty column relates to the Earned Income Tax Credit, or the EITC. What is it that you think should be done with the EITC, and why is important for people with disabilities?

Michael: Well, EITC -I know, Rebecca, you know- is for people with and without disabilities. It has lifted millions of people out of poverty. For people with disabilities, many of them are unaware they may even be eligible. There’s a lot of myths and misinformation about Earned Income Tax Credit. During the past ten years, National Disability Institute has worked collaboratively with the IRS to do outreach and education to the disability community that: you do not have to be a family, you do not have to have a family with children, to be eligible for the Earned Income Tax Credit. We have helped, over the past 10 years, 10 million low-income taxpayers with disabilities actually be helped with their tax return, and have recouped over $2 billion in tax refunds. But what we do know is the Earned Income Tax Credit could be even better. Right now, you have to be age 25 or older to be eligible. And it really – this is something, unusually, both at the Republican and Democratic sides – or spectrum – of ideology, there is agreement to bring down the Earned Income Tax Credit to a much lower age – 18, 19, 20. We also know the benefit is skewed towards families with children, and so an individual, which represents lots of folks with disabilities who are not part of a family – they’re getting a much lower credit or benefit. We had one of the key people of the IRS at our summit last week, who shared a very interesting statistic: despite our work with helping people with disabilities access the Earned Income Tax Credit, there are still 1.5 million individuals with disabilities who are eligible for the credit but have not realized that what they have to do is file a tax return. So we’ve got a way to go, but the EITC is an important tool. I think we’ve proven it to be, that is helping thousands of people in the disability community, and millions of low-income Americans really finally escape poverty.

Rebecca: Michael Morris, executive director of the National Disability Institute. Where can our listeners find more about the reports that you guys have done, and the other resources that you have?

Michael: Thank you for asking. We have a website that we hope will be easy to remember. “www.realeconomicimpact.org” And we urge people as well to join our Real Economic Impact Network.

Rebecca: Michael Morris, thank you so much for joining TalkPoverty radio.

Michael: Thank you, Rebecca.

Rebecca: And that’s our show. Thanks for listening to TalkPoverty radio on the WeAct radio network. We’ll be back next week, Thursday at 4. Also available on iTunes as a podcast or you can listen online at weactradio.com. Special thanks to our executive producers Alyssa Peterson and the one and only Greg Kaufmann, CAP’s amazing poverty and press teams-

Tracey: -and, as always, DC’s own Christlyez Bacon gets the last word. Thanks for listening.

Christlyez: [raps] I work and get paid like minimum wage, sites to hit the clock by the end of the day, hot from downtown until the hood where I stay, the only place I can afford cuz my block ain’t safe. I spend most of my time working trying to bring in the dough, and none of those could come at me with a HMO, and nowadays it’s common for grandparents to outlive their grandkids, and those the type of odds that we handlin’. I’m not a slave to a man with a whip, I’m a slave to the U.S. mint, and it got me doing things in my life that never made any sense, but it paid me in dollars and cents. I need the money for the food and healthcare, the schools and bus fare, you can’t pay the rent without the U.S. right there, with shackles on my hands and toes – they got a brotha moving slow but my soul is determined to go. I want freedom. Freedom. Now I don’t know where it’s at, but it’s calling me back. I feel my spirit is revealing amount. We just tryna get freedom. Freedom.

Many of the long-term services and supports that many people with disabilities need in order to live and work—such as personal attendant care—are not covered under most health insurance plans, and are prohibitively expensive for all but the wealthiest among us. As a result, if, like me, you require long-term care due to disability, you likely have only one option for access to coverage: Medicaid. For many people with disabilities, access to long-term care through Medicaid comes from eligibility for Supplemental Security Income (SSI). SSI also provides a limited cash stipend of up to $733 per month and beneficiaries must maintain assets below $2,000 in order to remain eligible.

The SSI program has powerful work incentives to enable beneficiaries to reach their potential in the workforce. For example, SSI removes one dollar in benefits for every two dollars earned, so that beneficiaries can gradually work their way off of cash benefits while maintaining access to the long-term services and supports that Medicaid provides.

Even if beneficiaries start earning enough to completely work their way off of cash benefits—which occurs when earnings exceed roughly $1,540 per month—they will continue to maintain their SSI and Medicaid eligibility under a special provision called “1619(b)” (as long as they continue to meet the program’s asset limits). Under this provision, beneficiaries can earn up to a certain threshold that varies by state, ranging from $27,244 per year in Alabama, to $65,144 per year in Connecticut. Additionally, SSI beneficiaries who have high medical costs can request a higher “individualized threshold.” While people do not receive a monthly cash benefit when they earn more than the SSI income limit, as long as they remain below their earnings threshold (and maintain assets below the limit) they continue to be a part of the SSI program and have access to Medicaid, including the long-term care many need in order to work. With the help of these work incentives and supports, more than 312,000 SSI beneficiaries were working as of the end of 2013.

Obstacles to Long-Term Employment

While the SSI program’s work incentives and supports are extremely helpful for workers with disabilities, beneficiaries with long-term employment can face a number of challenges. For example, the ridiculously low SSI asset test of $2,000—which has not budged in nearly three decades—is an ongoing struggle. The asset limit may not be a problem for some beneficiaries without work who are living on an SSI benefit of $733 per month. However, if you’re making $50,000 a year, the asset test means having to spend what you earn each and every month and never being able to save for the future. Some might say that workers with disabilities who can earn $50,000 shouldn’t remain eligible for SSI and Medicaid. However, if you have $60,000 worth of healthcare costs, you couldn’t survive—and couldn’t work—without access to the long-term care these vital programs provide.

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Workers with disabilities whose earnings exceed their threshold limit face challenges as well. Take Jenny. At the age of 16, she suffered a spinal cord injury in a skiing accident that resulted in quadriplegia.  She went on to college and has worked as a teacher in California since graduating. Jenny is a shining example of a person who has been able to thrive under SSI’s system of work incentives. However, after many years as a teacher, Jenny’s annual salary increases pushed her above her individualized threshold, and she was recently informed that she is no longer eligible for SSI and the Medicaid that comes with it. Jenny thus faces a catch-22: California’s school system does not allow Jenny to reduce her hours unless she works a two-thirds time position, which wouldn’t give her enough income to continue to pay her monthly bills and survive. But she also doesn’t earn enough to pay for her long-term supports and services out of pocket if she loses her Medicaid coverage. Don’t we as a society want Jenny to thrive as a teacher educating our children and also be able to get the care she needs in order to work and live?

Medicaid Buy-In Programs

Medicaid Buy-In (MBI) programs were established to address this challenge. They enable workers with disabilities like Jenny to “buy into” Medicaid by paying a premium.

Nearly every state has established an MBI program, each with its own financial eligibility requirements. While these programs enable many workers with disabilities to climb the economic ladder without losing access to the long-term care they need, many have income limits that are too low to help workers like Jenny. For example, California’s MBI program has a net income cap of 250% of the federal poverty level—far below Jenny’s current income. Only 15 states have programs with higher income limits than California’s, including three that have no income cap at all.

In addition to raising the earnings cap on eligibility for long-term care through Medicaid, we also need to address the problem of portability. As states’ MBI eligibility criteria vary widely, eligibility for one state’s program doesn’t guarantee eligibility for another in the event of a move. What we really need is a national Medicaid buy-in program that allows workers with disabilities to continue to climb the economic ladder and seek job opportunities without fear that they will lose the long-term care they need in order to work.

Out of Options Post-Employment

Longer term, Jenny will face a challenge that many workers with disabilities confront when employment stops due to retirement or a medical setback. This is because the Medicaid work incentive policies that allow some of a worker’s income to be disregarded for Medicaid long-term care eligibility do not apply to “unearned income” such as SSI benefits, annuities, or short- or long-term disability payments. While policies vary across states, this can be devastating for people suddenly living on a fixed income, who then face requirements to “spend down” a significant portion of that income on medical costs in order to maintain their eligibility for long-term care, leaving them with insufficient income to live on.

This is the future that lies ahead for many successful workers with disabilities. The federal government spends billions of dollars to help persons with disabilities return to work—but this misguided policy effectively requires you to work until you die, or to live in abject poverty in order to maintain access to the long-term care you need in order to live. This half-empty cup continues to impede progress toward the ADA’s vision of economic conclusion and participation in society.

Long-term, we should work together to establish a social insurance program that ensures access to long-term care. In the meantime, Congress should enable MBI participants to retain their access to Medicaid long-term services and supports despite medical setback or retirement. And it should eliminate or significantly raise the 1619(b) asset limits—and the SSI asset limits generally—so that workers with disabilities may save and plan for a modest retirement. Twenty-five years after the passage of the ADA, these measures would finally provide workers with disabilities like Jenny and I the opportunity to achieve the full American Dream.

Here’s the question the disability community and the next generation now face: We got the ADA 25 years ago, so what’s next? The answer you get depends greatly on whom you ask. My answer is likely a bit untraditional: we must protect the civil rights of parents with disabilities.

In 2012, the National Council on Disability released “Rocking the Cradle: Protecting the Civil Rights of Parents with Disabilities.”  The report examined the disparate treatment of parents with disabilities in matters of child custody, foster care, adoption, and family law. Right now in 37 states parents with disabilities can have their custodial rights terminated on the basis of having a disability. Additional rights to be an adoptive or foster parent, to have access to reproductive technology, and to be treated fairly in the eyes of the child welfare and family court system are also impacted by discrimination on the basis of a parent’s disability.

“She’s blind, how will she ever read a thermometer to see if her child has a temperature?” “He uses a wheelchair, how will he ever play baseball with his son?” Statements such as these are actual reasons that children have been stripped away from loving homes, according to the testimonies of Carrie Ann Lucas and Kelly Buckland at last week’s quarterly meeting of the National Council on Disability. Lucas is one of only four attorneys in the nation who work on these kinds of cases, and Buckland—the Executive Director of the National Council on Independent Living—wrote the first laws to protect civil rights of parents with disabilities in Idaho.

The bias against parents with disabilities is well embedded in the history of the United States. During the first half of the 20th century, the eugenics movement led to more than 30 states passing legislation that permitted the involuntary sterilization of people with disabilities. This legislative trend was based on the belief that people with disabilities and other “socially inadequate” populations would produce offspring who would be a burden on society. The Supreme Court subsequently endorsed this policy, and by 1970 more than 65,000 Americans had been involuntarily sterilized. Even today, 25 years after the passage of the ADA, several states still have some form of involuntary sterilization law on their books.

Parents with disabilities are the only distinct community of Americans who must struggle to retain custody of their children. As we found in Rocking the Cradle, removal rates when parents have a psychiatric disability have been found to be as high as 70 to 80 percent; when the parent has an intellectual disability, 40 to 80 percent. In families in which the parental disability is physical, 13 percent have reported discriminatory treatment in custody cases. Parents who are deaf or blind report extremely high rates of child removal and loss of parental rights. Parents with disabilities are more likely to lose custody of their children after divorce, have more difficulty accessing reproductive health care, and face significant barriers to adopting children.

Parents with disabilities and their children are disproportionately—and often inappropriately— referred to child welfare services. Once involved in the child welfare system, these families are permanently separated at disproportionately high rates for a number of reasons, including: inclusion of disability as grounds for termination of parental rights (TPR) in many state statutes; the disparate impact of certain provisions of the Adoption and Safe Families Act of 1997 (ASFA); perceived limits on the application of the Americans with Disabilities Act (ADA), especially at the termination phase; bias, speculation, and the “unfit parent” standard; and a lack of training in relevant systems regarding parents with disabilities.

People with disabilities also face significant barriers, and even outright discrimination, that can prevent them from accessing reproductive technology that can enable a person to become a parent, such as assisted reproductive technology (ART). ART providers regularly discriminate against people with disabilities. Additionally, the growing costs of ART, combined with the limited insurance coverage for these treatments, leave many people with disabilities unable to afford the treatment. Half of all women with disabilities are covered by Medicaid and existing federal law allows states to refuse coverage for fertility drugs (but not Viagra.) These discriminatory policies and practices impact all demographics in the disability community including disabled service men and women. For example, in May of this year the Washington Post reported on Holly and Alex Dillmann who were denied access to in vitro fertilization (IVF) via their Veterans Affairs health plan, which up until this year banned the procedure. Their case is just the tip of the iceberg.

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Recent guidance from the Departments of Justice and Health and Human Services reiterating these agencies’ legal obligations pursuant to the ADA is an extremely positive development. However, further action is needed at the federal, state, and local levels to give parents with disabilities a level playing field:

• Congress, the Administration, and federal agencies should fund research on parents with disabilities and their families.
• States should eliminate disability from their statutes as grounds for termination of parental rights and enact legislation that ensures the rights of parents with disabilities.
• Congress should address the disparate treatment experienced by parents with disabilities by adding specific protections in the Adoption and Safe Families Act.
• Congress should shift funding priorities at the federal level so that states have a greater incentive to provide services to families while the children are maintained in the home, as research has shown that in-home services are most effective, particularly for people with disabilities.
• HHS and DOJ should collect annual data on parents with disabilities and their interaction with child welfare agencies and dependency courts; and DOJ should include such matters in its enforcement priorities and consider violations of parental rights to be violations of civil rights.
• The HHS Children’s Bureau should collaborate with the National Institute on Disability and Rehabilitation Research (NIDRR) in funding and directing the Institute’s National Center for Parents with Disabilities and Their Families.

Despite a dark history marked by the eugenics movement, increasing numbers of people with disabilities are choosing to become parents. My husband and I knew there was a 50% chance that our children would have dwarfism, and that made the idea of parenthood even more attractive, as we perceive dwarfism as part of our family’s culture. The right to parent without interference is protected by the U.S. Constitution. A child should only be taken from a custodial parent when the disability creates a situation that cannot be alleviated or accommodated.

I dream of a day when removal of a child from a parent with a disability is a rarity, so that in another 25 years the 4 million-plus parents with disabilities will be celebrating the ADA’s 50^th Anniversary as grandparents.

To discuss how far we’ve come—and how far we still have to go—we’re joined by Talley Wells, Director of the Disability Integration Project at the Atlanta Legal Aid Society, for an overview of the ADA as well as the Supreme Court’s Olmstead decision, a critical civil rights case for people with disabilities. Courtesy of the Vera Institute, we feature remarks from Talila “TL” Lewis, founder of HEARD, on the impact of the criminal justice system on people with disabilities. We also hear from Alice Wong about the Disability Visibility Project, a partnership with StoryCorps to collect oral histories of people with disabilities. And we are joined by Michael Morris, Executive Director of the National Disability Institute, to discuss the work that lies ahead to ensure that disability and poverty no longer go hand in hand.

Here are 7 moments from this week’s episode reflecting on the ADA:

1.  “[Olmstead] is the most important civil rights decision for people with disabilities. It’s often called the Brown v. Board of Education decision for people with disabilities.”

2. “When the laws changed and society changed, [Kate Gainer] had the right to get in the front of the bus, but it wasn’t until much later – and the push from the disability rights movement – that she was actually able to get on the bus because she uses a wheelchair.”

3. “Tanisha Anderson, Freddie Gray, Anthony Hill, Ezell Ford. These are African American people with disabilities whose lives were cut short by law enforcement.”

4. “People with disabilities are the largest minority populations in jails and prisons.”

5. “Deaf-blind, deaf-disabled, and hard of hearing prisoners customarily experience discrimination and terrible abuse in our prisons. Punished for failure to obey commands they cannot hear.”

6. “I couldn’t believe it. It was thrilling to be in the White House and to actually say hello to the President.”

President Obama talks w Alice Wong via robot before ADA reception today. pic.twitter.com/W7BMEwWX9B

— petesouza (@petesouza) July 21, 2015

7. “There’s a disability pay gap: For every dollar earned by workers without disabilities, those with disabilities earn just 68 cents.”

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Despite the passage of the law, disparities in healthcare, education, and economic security continue to undermine the ability of people with disabilities to live in the community and to fully participate in every aspect of society.

I wonder how it is that in 2015, the labor force participation rate for people with disabilities (31%) is less than half that of non-disabled people (81%); that people with disabilities who use Medicaid-funded personal assistance services are unable to move from state to state without risking a reduction in their services; that people with disabilities who receive Supplemental Security Insurance (SSI) cannot save for the future because they are hindered by outdated asset limitations, which needlessly trap people in poverty; and that people with disabilities can face marriage penalties due to Medicaid and SSI policies regarding income and assets.

If the mission of the ADA is to prevail, these counterproductive policies must be reformed. Because how else can some segments of the disability population fully participate in society?

Challenging these insidious public policies requires listening to the stories and experiences of people with disabilities—and dismantling the idea that living with a disability is either something to be pitied or an inspirational act.

To that end, I often share my own story as a disabled Asian American woman and a person who uses consumer-directed Medicaid personal assistance services, arguing that these services are a basic human right. It was with that goal in mind that I also launched the Disability Visibility Project (DVP), a community partnership with StoryCorps. The project encourages people with disabilities to record their oral histories and to foster conversation on the lived experience of disability.

The following are just a few of the many stories we have collected through the project:

Ingrid Tischer on disability and work

… if you don’t have a disability, you know, basically you are encouraged to always present yourself in terms of what you can do. That’s your identity, hopefully, if you have a healthy sense of self. The things that you can’t do are simply the things you haven’t learned how to do yet, or that you didn’t really care about in the first place. It feels like the message that a person with a disability gets is your identity is based on what you’re unable to do.

(For extended audio clip with text click here.)

Mia Mingus on disabled women of color and able-bodied conceptions of work

So what does it mean then to be a disabled woman of color and to really be like, putting forth questions around work? And what does work mean? What does it mean to be a woman of color who can’t work? Or who is not able to work as much, right? And like, in some ways I feel like it’s totally oppression that like makes us work harder…I think about that a lot around like, yeah, disability and aging.

(For extended audio clip with text click here.)

Yomi Wong on economic justice and people with disabilities

…I think the next frontier, and I know that there are people working on this and talking about it, so it’s not like some nuanced idea is really economic justice for people with disabilities. I mean, we are among the poorest of the poor in this country, the most unemployed or underemployed demographic and you know, I think economic justice is really the next fight, and it, it’s the fight now, right? And it’s the fight in the future.

(For extended audio clip with text click here.)

Economic security is indeed the big elephant in the room when it comes to disability policy. Everyone knows it’s there, it stinks, and few have the political will to do anything about it. All the while, people with disabilities are being left behind. Storytelling is one way to change this dynamic.  By gathering individual narratives into a larger collective voice, we can provide a sense of urgency, and push for a transformative shift in the relationship between the state and people with disabilities.

All researchers, policymakers, and activists have a role to play in creating social change and expanding opportunity for people with disabilities. But the lived experiences of people with disabilities must be at the center of that process. I encourage people with disabilities to record and share the stories of their lives, and for people who work on disability policy to learn from our stories as we work to further inclusion and justice over the next 25 years.

“Every man, woman and child with a disability can now pass through once closed doors into a bright new era of equality, independence, and freedom,” said the President, giving voice to the hopes and expectations of millions of Americans with disabilities.

Twenty-five years later, as we celebrate this milestone and the significant progress we have made in creating a more accessible and inclusive nation, we must also pause to recognize the barriers that still exist and how much further we still have to go.

One of the central promises of the ADA was “to advance economic self-sufficiency” for Americans with disabilities. Yet 25 years after passage of the legislation, people with disabilities are more than twice as likely to live in poverty, and just 31 percent of working age Americans with disabilities participate in the workforce, as compared to more than 80 percent of nondisabled Americans.

Furthermore, many individuals with disabilities remain outside the economic mainstream. Two recent reports by National Disability Institute using survey data collected by the FINRA Investor Education Foundation and the FDIC National Survey of Unbanked and Underbanked Households, provide a snapshot of the unique financial obstacles and challenges confronted by individuals with disabilities:

•  Almost one in two households headed by working-age persons with disabilities are unbanked or underbanked. Just 46.5 percent of households headed by working age persons with disabilities have a savings account, compared to 72.5 percent of households headed by persons without disabilities.

•  Only 18 percent of people with disabilities have determined their retirement savings needs, as compared to nearly 50 percent of people without disabilities.

•  Among households headed by working-age persons with disabilities, nearly one-fifth are unbanked (18.4 percent) and more than one-fourth are underbanked (28.1 percent).

•  Households headed by working-age persons with disabilities are significantly more likely to report using costly alternative financial services—such as payday loans—than households headed by those without disabilities (46.7 percent vs. 35.1 percent, respectively).

These data demonstrate that disability and poverty still go hand in hand, and that people with disabilities are too frequently outside of the economic mainstream, challenged to identify a pathway to a better economic future.

The time to focus efforts toward the economic inclusion of persons with disabilities is now. Multiple new federal policies are paving the way for individuals with disabilities to enter the economic mainstream. For example, ABLE accounts—created through bipartisan legislation enacted last year—offer a new type of tax-advantaged savings account that allows certain people with disabilities to save and plan for short- and longer-term needs, such as education, employment, transportation, housing, technology, and health care. Importantly, money saved in an ABLE account is not counted as an asset for purposes of determining whether someone qualifies for federally-funded public benefits, including Supplemental Security Income (SSI), Medicaid, subsidized housing and food assistance. ABLE accounts in essence serve as a down payment on freedom—improving an individual’s ability to save, increase their independence, and forge a pathway out of poverty.

Given that nearly one in two households headed by working age persons with disabilities are unbanked or underbanked, establishing a mainstream banking relationship will make a significant difference for millions of Americans with disabilities and their families. Mainstream banking offers access to the same safe, secure, federally-insured accounts that the majority of Americans utilize for their everyday financial needs. These financial services are less costly, more secure, and create a better foundation for acquiring and maintaining assets than alternative financial service options like check cashing stores, pawn shops, and payday loans.

We look to America’s financial institutions to focus on access—helping consumers enter the banking system; sustainability—keeping consumers in the banking system; and growth—deepening banking relationships in order to improve the banking status and financial behaviors of adults with disabilities. With FDIC leadership, we are optimistic that our nation’s youth and adults with disabilities can build their trust and confidence with a mainstream bank in their community that invests in a long-term customer relationship. In partnership with both the public and private sectors, the National Disability Institute will continue to highlight the challenges and opportunities of engaging the disability community to expand the inclusiveness of the banking system.

Our current priorities for promoting economic inclusion and financial empowerment include: expanding the Earned Income Tax Credit (EITC) to lower the eligibility age and improve the credit’s value for workers without dependent children; reforming Social Security’s rules to allow a gradual reduction of benefits for working Social Security Disability Insurance (SSDI) beneficiaries; modernizing the outdated SSI asset limits, currently set at just $2,000 for an individual and $3,000 for a couple; and enhancing the ABLE Act to reach more individuals with disabilities and to increase the annual contribution limits on ABLE accounts.

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As we celebrate the 25^th Anniversary of the ADA we acknowledge the strides that our nation has made towards full inclusion. Meanwhile, we must acknowledge the millions of Americans with disabilities still left on the outside looking in. And we must continue our work until the full promise of the ADA is realized.

To quote Bob Williams, a distinguished activist, policymaker, and public servant, “The ADA stands for the proposition that the American Dream must be accessible to all and within reach of those who seek it and are willing to work violently hard to achieve their slice of it. It equips us with the opportunity, tools and obligation to make good on this principle. The rest is up to us.”

Authors’ Note: The National Disability Institute has published two groundbreaking reports, Banking Status and Financial Behaviors of Adults with Disabilities (PDF) and Financial Capability of Adults with Disabilities (PDF), using national survey data to examine the state of financial inclusion for Americans with disabilities.

Over the last 50 years, the battle for inclusion has been a main plot of our American story.  It is a battle we are winning, and  one that we are losing.  It deepens our pride and sometimes our prejudice.  Although often overshadowed, the disability community has been at the center of this struggle for inclusion and our evolving understanding of what inclusion means.

We have seen the push and pull toward inclusion erupt in many forms over the past few weeks.  Most recently, the Supreme Court affirmed both a critical tool in the Fair Housing Act and the right to gay marriage. Yet, we also saw abhorrent acts of violence based on race.  And yet… we saw an Indian American Governor and two Senators (one white and one black) lead South Carolina in taking down its Confederate Flag.  And yet…

In the midst of these skirmishes, people with disabilities celebrate two of the greatest victories for inclusion in our country’s history: Olmstead v. LC (1999) and the Americans with Disabilities Act (1990). These landmark events are related.

Olmstead, an Atlanta Legal Aid Society case, is often called the “Brown v. Board decision” for people with disabilities. The Court explained that its holding “reflects two evident judgments.” First, “institutional placement of persons who can handle and benefit from community settings perpetuates unwarranted assumptions that persons so isolated are incapable of or unworthy of participating in community life.” Second, “confinement in an institution severely diminishes the everyday life activities of individuals, including family relations, social contacts, work options, economic independence, educational advancement, and cultural enrichment.” It ordered the state of Georgia to assist two women with disabilities so they could live in their own homes rather than continuing to confine them to a hospital for people with similar disabilities. Olmstead is slowly transforming our country from a 19^th century system of institutions, isolation, and dependence, to a 21^st century nation of inclusion, opportunity, and independence.  And yet… amidst the celebration, we recognize that thousands with disabilities still languish on waiting lists, in institutions, and without jobs – waiting for the promise of inclusion to materialize.

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On July 26^th, we marked the 25^th anniversary of the Americans with Disabilities Act (ADA). While today we take it for granted, the passage of the ADA was an arduous struggle.  It is best symbolized by Tom Olin’s photograph of men and women with disabilities leaving their wheelchairs and pushing their way up the steps of the Capitol. In signing the act, President George H.W. Bush declared that the ADA would ensure people with disabilities “the opportunity to blend fully and equally into the rich mosaic of the American mainstream.”

Even though the ADA created legal requirements to enable inclusion and stop discrimination, people with disabilities are often still segregated into institutions and excluded. Civil legal aid providers, including those in the national Protection & Advocacy system, play a critical role in ensuring fair treatment of people with disabilities; but the available resources are insufficient to meet the need.  These organizations advocate for accessible and integrated education, employment, housing, and healthcare for people with disabilities of all ages.  In many states, men and women with disabilities – many of whom live with aging parents – need the help of legal advocates in order to obtain the supports.  Without such help, they may be forced to join others like them who already languish in institutions.

In Georgia, the past five years have shown both the promise of Olmstead and the enormous work that remains.  The United States Department of Justice – in collaboration with the Atlanta Legal Aid Society, the Georgia Advocacy Office, the Bazelon Center for Mental Health Law, and other mental health advocates – reached a settlement to close the state’s psychiatric hospitals and provide an array of supports, including housing, to thousands of Georgians with severe and persistent mental illness.  The state also promised to transition everyone with developmental disabilities from the state hospitals to the community, and to provide limited services to people with developmental disabilities in the community.

Due to the settlement, Georgia has invested more than $170 million in new dollars into these systems with mixed success.  A range of new services are enabling people with mental illness to live meaningful lives in the community.  The state is providing 2,300 new state housing vouchers similar to Section 8 and has adopted a housing first policy that ensures permanent stable housing as a first step before services are initiated.  On the developmental disability side, the state has realized its infrastructure of services is broken and has placed a moratorium on transitions.  The Justice Department and Georgia are negotiating an extension of that part of the settlement.

There is still more to do on Olmstead.  The Atlanta Legal Aid Society will continue to advocate for Georgians in nursing homes who want to be in the community and will push the state to address the 7,900 person waiting list for developmental disability services – a list that includes 2,890 people waiting years for services despite the fact that the state has determined that they need services within six months.

This is just Georgia.  Olmstead cases are being brought to courts across the country.  Civil legal aid attorneys now have new tools to bring these cases with pleadings and a legal outline on the new OlmsteadRights.org website, developed by the Atlanta Legal Aid Society in partnership with the National Disability Rights Network.  The website also shares the history of Olmstead, provides tools for people to advocate for themselves, and tells the stories of men and women whose lives have been transformed by Olmstead.

In the years since Olmstead and the passage of the ADA, we as a country have engaged in the difficult and revolutionary work of real inclusion.  We have wrestled with what actions governments, businesses, and each of us must take to accommodate our fellow citizens who use wheelchairs and who have sight and hearing impairments.  We have brought students who learn differently into our regular classes.  And we have helped people return to their own homes who thought they would die in nursing facilities.

Along the way, we have learned the value of inclusion.  Ramps assist people with disabilities, and also aging family members, parents with strollers, and, of course, our rolling suitcases.  Assistive technology, smart phones, and computers have made life easier and more efficient for everyone – not just people with disabilities. And our workplaces, classrooms and communities benefit from the participation and contributions of people who formerly would have been unnecessarily locked away in institutions.

In our rapidly diversifying nation, the battle over inclusion will continue in politics, the courtroom, and our local neighborhoods.  The nation should continue to look to our extraordinary disability community for how to do inclusion well.  And yet… our nation must also recognize how far we have to go.

– President George H.W. Bush, at the signing of the Americans with Disabilities Act

 The Americans with Disabilities Act (ADA) turns 25 on Sunday, and it has done a tremendous amount to break down barriers and open doors for people with disabilities. Many of my closest friends and colleagues count themselves members of the “ADA generation” and proclaim with confidence that they would not be where they are today if not for the passage of this watershed legislation. But as we celebrate this important landmark, it would be a grave mistake to declare that the struggle for inclusion is over as a great deal of work remains.

As I’ve written here before, disability is both a cause and consequence of poverty, and twenty-five years after the signing of the ADA, the two still go hand in hand. The poverty rate for working-age people with disabilities remains more than double that for people without disabilities.

People with disabilities are also significantly more likely to experience material hardships—things like food insecurity; not being able to pay rent, mortgage, or utilities; or inability to access needed medical care—than people without disabilities, even at the same income levels. The same is true for families caring for a child with a disability.

People with disabilities are also nearly twice as likely to lack even modest savings to help them weather job loss, an unexpected bill, or other financial shock, according to the National Disability Institute.

As we look ahead to the next 25 years of breaking down barriers, it’s time to examine our own work as advocates for change. The next wall that needs to come down is the one that keeps disability advocacy in its own bucket, separate and apart from the broader fight for a fair economy and equal opportunity. Until disability inclusion—both social and economic—is a core part of the economic justice movement, we’ll continue to miss a huge piece of the puzzle.

Much of the economic agenda to break the link between disability and poverty is already mainstream. Raising the minimum wage. Boosting the Earned Income Tax Credit for workers without dependent children. Expanding Medicaid. Paid leave and paid sick days. Strengthening Social Security (including updating the woefully outdated Supplemental Security Income asset limits). Add in affordable, accessible housing; accessible transportation; and ensuring access to long-term services and supports and we’ve got a to-do list that would go a long way toward reducing poverty and expanding opportunity for people with disabilities.

As President George H.W. Bush’s signed the ADA into law, he closed his remarks with this: “Let the shameful wall of exclusion finally come tumbling down.”  Let’s take that to heart not only as we fight for inclusionary social and economic policies, but as we shape our work and tactics as change-makers.

It is in that spirit that throughout next week, TalkPoverty.org will feature posts from disability leaders, all exploring the link between disability and poverty and solutions that would increase economic opportunity for people with disabilities. This week is not intended to be a comprehensive examination of the topic. But we hope it will help advance this important conversation, and we look forward to working with our readers, contributors, and partners to break down the silos that have kept disability separate from the broader fight for economic justice for far too long.

You work your whole life. You pay your taxes – boy, do you pay your taxes. Unlike upper-middle and upper-class folks who have tax preparers and accountants to help them with their taxes and find deductions and loopholes and so forth, you get slammed every year and you can barely keep afloat…then, the worst happens.

You get old and disabled and you can’t work any more and your disability/social security isn’t really enough to live on and you never were able to get much retirement money together so the government gives you something called SSI. Between that and Social Security you still don’t have enough to live on but what can you do?

To add indignity to insult, the government tells you how much money you can have in the bank and it ain’t much: just $2,000.

If someone lends you money to get by you can’t repay the debt out of your Social Security or SSI because the government watches everything you do and they don’t want you to borrow money or pay it back because the bottom line is the government is afraid to be cheated. Sadly enough, they are mostly afraid of being cheated by poor people. Rich people seem to be able to get away with murder.

Now a bunch of politicians and well-wishers are trying to change the laws a little bit…not majorly, just minorly, to make it a little easier for us to survive. And yet they will run into obstacles.

I wish everyone who opposes making life a little better for poor old disabled people (or even poor old people) would put $10.00 in an envelope and send it anonymously to a poor old person.

In the meantime, I’m looking for a part-time or freelance job. I’m 72 and I’m broke and can’t afford to live on Social Security and SSI and I don’t really know what to do. Also, I’m in dialysis, so that chews up around four days a week. So I’ll keep looking for a job, albeit futilely, and if I can figure out a way to rob a bank I might do that…I have an electric wheelchair and could do a slow-speed chase down the street if I had to.…

So, whilst I’m thinking of it, if anyone out there wants to offer me a job I would be extremely happy, and also, I could use a nice little house with a yard for my dog and a couple of tomato plants and maybe a lemon tree or an avocado tree. Just thought I’d put that out there.

Cheers to all, and remember, wait for the supermarket sales! And never give up – fight to the bitter end.

Et tu, Orange is the New Black?

The Netflix drama is back with a third season, and if you’re like me, it monopolized the better part of the last two weekends. The show deserves credit for sparking dialogue and increasing awareness about mass incarceration in the U.S., particularly among people who hadn’t previously considered criminal justice reform to be their thing.

The show’s typically smart writing and masterful treatment of a serious and complex topic made the first episode all the more disappointing.

One of the very first scenes of the third season is a flashback to the character Pennsatucky’s childhood. We watch as her mother forces her to chug an entire two-liter bottle of Mountain Dew. Pan right to the sign showing us that they’re at the Social Security Administration office. Then we hear Mom say, with a young Pennsatucky now bouncing off the walls behind her, “So I understand, Supplemental Security Income benefits for kids like mine are $314 a month, is that right?”

The implication is clear: Mom is attempting to simulate the symptoms of ADHD in her child in order to fraudulently obtain SSI benefits.

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This scene caused me to have several flashbacks of my own. First, to the mid-1990s, when a flurry of media reports accused parents of “coaching” their children to “act disabled” in order to feign eligibility for SSI benefits. The “crazy checks” media frenzy, as it came to be known, spurred Congress to narrow the program’s eligibility rules, causing more than 100,000 children with disabilities to lose critically needed benefits. The media claims were later shown to be baseless, but the damage had already been done, and Congress had already legislated by anecdote.

I also flashed back to 2010, when media allegations accused parents of seeking psychotropic medications for their children in hopes of SSI eligibility. These claims were similarly debunked after multiple investigations. But again, the media allegations rang loudly in the halls of Congress, leading to hearings and yet more proposals to cut SSI.

My head swirling, I was next transported to 2012, when New York Times columnist Nick Kristof sparked yet another kids’ SSI media hubbub by accusing parents of pulling their kids out of literacy programs in order to obtain SSI benefits. Mr. Kristof’s claims that the program incents parents to keep their kids from learning to read were similarly unsupported by the facts—but that didn’t stop NPR from doubling down on his claims with their own (widely discredited) “reporting” just a few months later. Legislation that would kick young people with disabilities off of SSI if they miss school is now pending in Congress.

Each set of media allegations—as well as the disappointing OITNB scene—reflects a continued lack of understanding of mental impairments. They perpetuate the stereotype that if you have a visible physical impairment, you’re ‘truly disabled,’ but if you have an invisible mental disorder, your impairment is somehow less real, or less legitimate.

What’s more, each set of media attacks—as well as the OITNB scene—reflects vast ignorance about the SSI program, perpetuating the myth that it’s easy to get benefits. Getting hyped up on a caffeinated drink before you walk into the Social Security office may make for entertaining TV, but it won’t get you anything in real life.

SSI serves as a vital lifeline for families caring for children with disabilities. It makes it possible for families to care for their children with disabilities at home and in their communities, instead of in costly and isolating institutions. Only children with the most severe impairments and illnesses qualify for SSI. The majority of children who apply are denied, and fewer than 1 in 4 U.S. children with disabilities receive benefits.

Raising a child with a disability is extraordinarily expensive. Families caring for children with disabilities are more than twice as likely as other families with children to face material hardships such as homelessness, food insecurity, and utility shutoff. The financial support that SSI provides helps to offset some of the commonly incurred costs, including special therapies, diapers for older children, adaptive equipment, and transportation to doctors and specialists, many of which are not covered by insurance or have high copays. SSI benefits also replace a portion of lost income when a parent must stay home or reduce her hours to care for a child.ADHD is a neurobiological disorder that affects 5 to 8 percent of school-age children.

But only the most severely impaired children are eligible for SSI. More than 75 percent of children with ADHD who apply for benefits are denied, and just 4 percent of U.S. children with ADHD receive SSI.

Moreover, qualifying for SSI on the basis of ADHD—or any other mental or physical impairment—requires extensive medical evidence from approved medical sources (including physicians and specialists) documenting the severe impairment as well as its resulting symptoms. A child’s impairment must result in marked and severe functional limitations and must be expected to last at least 12 months or to result in death.

In fairness to Orange is the New Black, the show is fiction. Unlike the media frenzies over the years, it didn’t claim to be reporting the facts. But, as with the latest season of House of Cards, which was infused with “real-world lies” about Social Security—it’s “sucking us dry”… “entitlements are bankrupting us”—the silver screen’s treatment of important public policy issues has a very real, and potentially destructive, impact. (Coincidentally or not, House of Cards is also produced by Netflix.)

Media portrayals that reinforce myths about mental disorders do us a significant disservice and contribute to the harmful denial of mental illness that persists even in the 21st century. Media portrayals that reinforce negative stereotypes about vital programs and the individuals helped by them are similarly dangerous, sowing the seeds for cuts that will make vulnerable people’s lives all the more difficult.

Disability is both a cause and consequence of poverty.

It’s critical to note the progress that has been made in the past several decades. The Americans with Disabilities Act, enacted nearly 25 years ago, prohibits discrimination on the basis of disability and guarantees that people with disabilities have “equal opportunity” to participate in American life. The Individuals with Disabilities Education Act (IDEA), enacted the same year, requires that students with disabilities be provided a “free, appropriate public education” just like all other students. The Workforce Innovation and Opportunity Act expands access for people with disabilities to education and training programs, programs for transition-age youth and young adults transitioning to adulthood, vocational rehabilitation, and more.

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