You Work Until You Die

As we commemorate the 25th anniversary of the Americans with Disabilities Act (ADA), we have a lot to celebrate as a nation. We also still have a long way to go, as we see clearly when it comes to long-term services and supports. As a person with a disability, having a successful career as a health and disability policy analyst, I have benefited from its impact, but continue to see much left to be done.

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.

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.

This half-empty cup continues to impede progress toward the ADA’s vision of economic conclusion and participation in society.

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.



The ADA at 25: People with Disabilities Want Kids

Throughout this month, the disability community and its allies are celebrating the 25th Anniversary of the Americans with Disabilities Act (ADA). As a second-generation person with a disability, I had the good fortune of literally being born into the disability rights movement. My father ran a Center for Independent Living, and my mother—who was denied tenure early in her teaching career because she could only reach the bottom six inches of a chalkboard—worked in Disability Student Services. Today, my husband and I are raising two children with disabilities.

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.

Right now in 37 states parents with disabilities can have their custodial rights terminated on the basis of having a disability.

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.

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 50th Anniversary as grandparents.



7 Reflections on the ADA at 25

July 26th marked 25 years since the passage of the Americans with Disabilities Act, and TalkPoverty is commemorating this landmark legislation all week.


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.”

Colorado Disabled Parents

  1. “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.”

Edward Davenport

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

Suspect Dies Baltimore

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

California Prisons

  1. “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.”

Stephen Brodie

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

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

Ray Campbell

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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.