First Person

Telling Our Stories: Why I Launched the Disability Visibility Project

This year, we commemorate the 25th anniversary of the Americans with Disabilities Act (ADA) and recognize the achievements and progress of people with disabilities. While I appreciate the labor and sacrifices of generations of people in the disability rights movement, I can’t help but have a slightly jaded view of the ADA festivities in light of the current status of people with disabilities.

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disabilities who receive Supplemental Security Insurance (SSI) cannot save for the future because they are hindered by outdated asset limitations, which needlessly trap people in poverty; and that people with disabilities can face marriage penalties due to Medicaid and SSI policies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.

By gathering individual narratives into a larger collective voice, we can provide a sense of urgency.

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.



Promoting Financial Inclusion and Economic Stability for Individuals with Disabilities

On July 26, 1990, under a brilliant blue sky and with the stroke of a pen, President George H.W. Bush signed into law the Americans with Disabilities Act (ADA).

“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.

Disability and poverty still go hand in hand.

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.

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.

As we celebrate the 25th 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.



Too Sick to Care: Direct-Care Workers in the Coverage Gap

Imagine arranging care for your elderly mother who has the beginnings of dementia. The home care aide, who has established a warm and caring relationship with her, hurts her back while helping your mother out of the shower. Because the home care aide has no health coverage, she doesn’t go to the doctor. She misses a few days of work, leaving you with a substitute sent by the agency. This is confusing to your mother, who doesn’t trust the new aide. Then, as that relationship is improving, the original aide returns but her pain grows worse. Just as you think the situation is stable—your mother is in the hands of an experienced aide whom she trusts—the aide quits because she fears her pain is endangering her clients. You have to start all over again.

This scenario is common. Hardworking direct-care workers give up their jobs because of untreated injuries and chronic illnesses that could have been managed if the worker had access to health coverage. Our new analysis, “Too Sick to Care”, finds that nearly 300,000 of America’s paid caregivers—nursing assistants, home health aides and personal care aides who provide care and assistance to millions of our nation’s elders and people with disabilities—have been denied coverage because they live in one of the 21 states, mostly across the deep South and Midwest, that have rejected federal funds from the Affordable Care Act for Medicaid expansion.

These workers fall into the “coverage gap”—that is, without expansion they are ineligible for Medicaid coverage but earn incomes below the minimum threshold (100 percent of the federal poverty line or $24,250 for a family of four) required to receive tax credits to buy coverage on a state market exchange.

Solving this coverage issue for direct-care workers is significant not only for them but for all of us.

“You have either been a caregiver, you are a caregiver, you will be a caregiver, or someone will care for you.”

With growing numbers of elders and people with disabilities, the demand for direct-care workers—particularly those who care for clients in their homes—is skyrocketing. The two home care occupations—home health aide and personal care aide—will create more new jobs between 2012 and 2022 than any other occupation.

If a large percentage of these workers are unable to access health coverage, we will find it increasingly challenging to find the care we need for ourselves or our loved ones. For people living with disabilities, this isn’t simply an inconvenience, it is a barrier to exercising their civil rights. On the 25th anniversary of the Americans with Disabilities Act, it is important to remember that living independently in the community—a right that people have fought for, for decades—requires access to a robust and stable workforce.

But long-term care employers, particularly those who provide supports in private homes, are already reporting that they cannot find or retain sufficient numbers of workers to meet the demand for services. It’s not surprising: average wages are less than $10 per hour; injury rates are higher than in almost all other occupations; and employer-sponsored health coverage is uncommon. The reality is that one in two workers leave the job each year. This turnover is highly disruptive for clients and undermines the overall quality of care.

So what can we do to ensure that direct care workers don’t go without health coverage themselves?

First, and foremost, we need to continue to advocate for states to expand Medicaid coverage. Direct-care workers are 32 percent less likely than other workers to have employer-sponsored coverage, making Medicaid an important option.  Long-term care employers who depend on Medicaid reimbursement for the majority of their revenues often can’t afford to offer health coverage. For example, in North Carolina, the state pays only $13.88 per hour for personal care services. The average wage for a personal care aide is $9.18, making it extremely difficult for the provider to also provide health coverage.

One solution would be to provide a “differential reimbursement rate” for high-road employers who make affordable health coverage for their workers a priority. Under this scenario, states would pay providers an additional amount per hour of service provided. Recognizing the recruitment challenges in their state, the Maine legislature recently increased Medicaid reimbursement to home care providers from $15 to $25 per hour. The legislation is essentially a “wage pass-through.” Almost the entire increase (85 percent) must be used to increase direct-care worker wages and benefits, including health care coverage, as opposed to being used to fund administrative or other agency expenses.

Finally, about 25 percent of direct-care workers are immigrants. Unfortunately, lawfully residing immigrants who have lived in the US for less than five years cannot access Medicaid coverage for themselves or their children, although 14 states extend some health benefits through state programs. Undocumented immigrants are not eligible for either Medicaid coverage or federal subsidies. Recently, the California State Senate passed a bill to offer coverage to undocumented immigrants in their state. A better solution would be for Congress to create a path to citizenship for direct-care workers, thereby expanding opportunities and improving wages and benefits, and growing and stabilizing the workforce.

As Rosalynn Carter once said, “You have either been a caregiver, you are a caregiver, you will be a caregiver, or someone will care for you.” Acknowledging this universal reality, we must expand coverage to all direct-care workers so that they can continue to provide quality care for those who need it while also caring for themselves and their families.



The Push and Pull Towards an Inclusive Nation

For most Americans, turning twenty-one is an exciting birthday.  But for college student Andrew Furey, it was the date set by the state of Georgia to stop the home health services he needed to stay alive.  Andrew has muscular dystrophy and uses a ventilator and other complex equipment to breathe.  Georgia would provide Andrew these health services in a nursing home but not in his own home.  The Atlanta Legal Aid Society appealed this decision and won, so Andrew was able to receive the services he needed at home.

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 19th century system of institutions, isolation, and dependence, to a 21st 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.

On July 26th, we marked the 25th 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 olmstead2country.  Civil legal aid attorneys now have new tools to bring these cases with pleadings and a legal outline on the new 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.



Why We’re Hosting TalkPoverty and Disability Week

“Together, we must remove the physical barriers we have created and the social barriers that we have accepted. For ours will never be a truly prosperous nation until all within it prosper.”

– 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.

Until disability inclusion is a core part of the economic justice movement, we’ll continue to miss a huge piece of the puzzle.

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, 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.