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 50^th Anniversary as grandparents.

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:

“[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.”

“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.”

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

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

“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.”

“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

“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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This year, we commemorate the 25^th 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.

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 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.

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 25^th 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 ADA at 25: People with Disabilities Want Kids

7 Reflections on the ADA at 25

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Telling Our Stories: Why I Launched the Disability Visibility Project

Promoting Financial Inclusion and Economic Stability for Individuals with Disabilities

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

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