What’s next for disability policy?
The disability community in the United States is going through uncertain times.
For people with disabilities, the past few years have been both terrifying and exciting. People with disabilities have on the one hand faced unprecedented dangers, such as the Covid-19 pandemic and the repeal of the Affordable Care Act. At the same time, they marveled at strong signs of the disability community’s political power and steps towards previously unimaginable but deeply cherished political goals.
The election of President Joe Biden with a slim Democratic majority in Congress offered real hope of relief and success for a battered but resilient community of disabled people. Biden had put forward a fairly substantial disability platform. It wasn’t as ambitious as some of its main rivals, like Elizabeth Warren and Bernie Sanders. But he has offered far more disability policy than any previous presidential candidate. Most notably, the administration’s original Build Back Better plan included what would have been historic investments in home care, as well as long-awaited fixes and increases in Supplemental Security Income (SSI).
But Build Back Better’s massive “reconciliation” package has stalled. The pandemic continues, inflation rises, war rages in Eastern Europe, and the president’s approval ratings are low. According to a recent poll by The Century Foundation and Data For Progress, only 1 in 3 voters with disabilities think their leaders in Washington care about people with disabilities. With politics in Washington even more polarized and distracted, and disabled voters’ trust in their legislators shaky at best, what can people with disabilities reasonably expect now? And what can the disability community fruitfully focus on in the months ahead?
Despite recent setbacks and disappointments, disability policy experts and activists believe that some important goals and targets are still achievable. Here are three areas of disability policy that are still considered not only important for people with disabilities, but ripe for real achievement.
Home and community services
The top priority continues to be to significantly increase funding for Home and Community Services (HCBS) – which enable people with significant disabilities to live independently in their own homes rather than in care facilities. The aim is to reduce or if possible eliminate the “waiting lists” of the elderly and disabled qualified for home care, but cannot get it just because of insufficient funding. The HCBS increases would also allow states to raise wages and benefits for homeworkers, address the worsening worker shortage, and pay homeworkers what they deserve. This was part of the Build Back Better plan, which was originally intended to be a $400 billion investment over 10 years – a figure which was significantly reduced during negotiations, but which would still have been historic and significant had it been adopted.
Disability policy makers say increased funding for HCBS is as part of ongoing efforts to agree on a scaled down version of Build Back Better. “There’s a smaller economic bill that we hope to include at least HCBS,” says Mia Ives-Rublee, director of the Disability Justice Initiative at the Center for American Progress. “There is broad caucus support for expanding access to HCBS,” adds Bethany Lilly, Director of Revenue Policy at The Arc, “and we and our Hill Champions will continue to push for this to be included. “
“Disability advocates are also talking about how to come back and push for more transformative solutions ‘at HCBS,'” says Julia Bascom, executive director of the Autistic Self Advocacy Network. include:
- Fully fund HCBS to completely eliminate waiting lists.
- Expand eligibility and lower income thresholds — so more people with disabilities can access services without having to live in permanent poverty.
- More control over consumers – so people with disabilities who want to can hire and manage their own home care, instead of outsourcing it to an agency.
Like most disability policy issues, the integration of home care into full potential in the lives of people with disabilities is a combination of small steps, big ambitions and patience. “This work will take decades,” admits Bascom.
Gradual abolition of the sub-minimum wage
In the meantime, there may be more immediate hope of finally redressing a long-standing injustice, by phasing out the practice of paying some disabled workers less than minimum wage.
It has been legal since the 1930s. Then the understanding of the abilities of people with disabilities and human rights was radically different. There are now much better tools and supports to help people with disabilities thrive in real jobs. And paying some people with disabilities less than what is legally allowed for others just doesn’t seem justified anymore. The practice is increasingly outdated and patently unfair. Some states have already ended the sub-minimum wage for workers with disabilities. And there is evidence that proponents of this change are closing in on enough support in Congress to end it nationwide.
Still, employers and disability agencies that still use the sub-minimum wage are reluctant, and some families fear their disabled loved ones will be shut out of the workforce entirely if they can’t be paid the lower rates. The counter-argument is simple justice, a significantly changed understanding of the abilities of people with disabilities from decades ago when the policy was developed, and robust models to help support people with disabilities who may still have difficulties in finding gainful employment. A carefully planned disposal is the most realistic and widely accepted model. This would end sub-minimum wage in the short term, while reducing disruption for people with disabilities currently working for sub-minimum wage.
“A lot of groundwork has been thrown into ending subminimum wage,” Bascom says, “and we’re seeing incredible momentum at the state level. We’re very close to that.
Reform of Social Security Disability and SSI
Major reforms of Social Security still seem a long way off. But some changes may be achievable in the short term.
One possibility is to eliminate some of the “marriage penalties” of SSI (Additional Security Income) and SSDI (Social Security Disability). These are regulations that lead to reductions in benefits or the complete loss of benefits if disabled people receiving benefits marry. Another potentially achievable goal is to extend SSI to citizens living in US territories, such as Puerto Rico. This is all the more timely as the Supreme Court recently ruled that such benefits are not constitutionally to have be at the disposal of the territories. It is now up to Congress to act.
Other more fundamental changes to the SSI and SSDI will take longer and likely require quite different political dynamics in Congress. But there already appears to be strong grassroots support for real change that millions of Americans with disabilities have been advocating for decades — but previously without much hope.
Rebecca Vallas, Senior Fellow at the Century Foundation and leader of its new Economic Justice for People with Disabilities team, cites “…growing bipartisan support, as well as growing corporate support, to bring the SSI program into the 21st century. “. She says that would specifically involve “updating SSI’s woefully outdated asset and income limits” — eligibility thresholds that deny benefits to those who need them and actively discourage people with disabilities from working. It’s not just beneficiaries with disabilities and activists who think more fundamental changes are needed. As Vallas points out, “JP Morgan Chase has just publicly announced its support for updated SSI income and asset rules.”
These updates are key examples of some of the major changes in SSI and SSDI that people with disabilities and advocates are looking for. Their goal is that people with disabilities who rely on SSI or SSDI, and Medicaid or Medicare, can work, earn, and save more for themselves without losing those benefits. It’s also another way to help people with disabilities lift themselves out of poverty and pay disability benefits. to encourage rather than to discourage work.
Vallas cites the recent TCF/Data For Progress poll, which suggests strong support for these eligibility changes, including:
- 80% of voters with disabilities
- ⅔ of valid voters
- 78% of total voters
- 81% of Democrats
- 78% independent
- 73% Republicans
Another goal is to significantly increase the low and historically stagnant monthly delivery of SSI and SSDI the amounts. These should be benefit increases well beyond modest annual cost-of-living adjustments (COLAs) – again aimed at lifting all recipients out of poverty.
All of these changes can have strong support and make practical, human sense. But the political and structural barriers are high. The SSDI is particularly difficult to change, because it cannot be done with “reconciliation” and must therefore pass by a 2/3 majority in the Senate. Changes to the ISS can be adopted by a simple majority by “reconciliation”. But as happened with Build Back Better, even in simple majority votes, one or two members can derail everything.
Yet disability activists believe there are good reasons to be hopeful and to continue working for both narrow, short-term goals and broader, long-term goals.
“I think there’s actually more interest in Congress in disability legislation right now than there has been for many years,” says Bethany Lilly of The Arc. There are limits to what can be done with such narrow congressional majorities and the filibuster. But most legislative goals of the disability community — individually assessed on their merits — seem to have broad appeal for nearly all Americans with disabilities and their allies.
Lilly adds: “2022 is also an election year and getting to know your candidates and their positions and voting in November will also be essential.”
The next thing Americans with disabilities and disability activists should do then might be to insist – again – that candidates for Congress and other offices speak up about these disability issues and make real commitments.