On September 26th, Stony Brook University’s School of Social Welfare and New York Law School hosted the Disability Squeeze Symposium. This gathering brought together disability researchers and advocates working to combat the cost-of-living crisis affecting our communities. Over the course of the day, speakers made plain the hidden costs that affect people with disabilities every day, and the importance of addressing them to ensure community living for all. AAHD staff, board members and partners were among the speakers that shaped this conversation.
So what is the Disability Squeeze? According to recent findings from a study led by the symposium organizers and funded by the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR) published in the Disability & Health Journal, the squeeze refers to an extra $5,000 in out-of-pocket disability-related expenses every year for adults with disabilities. With additional costs just to meet basic needs, a majority of the disability community from this study (2/3) reported that their needs often go unmet. Historically marginalized individuals with disabilities are even more likely to have unmet needs, often due to cost. Unmet needs can seriously impact quality of life and health outcomes for people with disabilities. Essentials like assistive technology, medication, and home modifications are critical for community living. For each of these, affordability is the cornerstone of making accessibility and inclusion possible. When public programs don’t cover the specific needs of people with disabilities, it falls to individuals to pay for their own services and supports. Paying out of pocket is just not possible for many who have to navigate complex administrative burdens and restrictions to retain their healthcare, housing, and disability benefits. Significant policy changes are needed to ease the Disability Squeeze, which forces people with disabilities to make impossible choices when trying to meet their basic needs.
The Deaf Disability Squeeze
The symposium highlighted the way the cost-of-living crisis affects specific disability populations. Tony Wooden from the NYC Mayor’s Office for People with Disabilities shared about the importance of cost-of-living research specific to the needs of deaf, low hearing, and deaf-blind individuals of all backgrounds. People with low hearing are often paying out of pocket to cover the costs of language access in day-to-day life. In most public assistance programs, the cost of accurate interpretation services is often not a covered program expense to ensure people can communicate. Whether interacting with a police officer or a healthcare provider, there can be extra risks to lacking communication access for people who are deaf. Without adequate communication support, you might get the wrong diagnosis, or a request from a law enforcement officer could escalate due to miscommunication. Tony highlighted the importance of data to illuminate the needs of specific deaf populations by race, age, gender, or immigration status, to make sure that we understand the disparate costs of living across every group. Policies to support the deaf community should be based on real information, rather than assumptions, to be effective. With accurate data, we can determine how much more funding is needed to meet this community’s needs, whether that’s for language access or for mental health support.
Policy Action to Combat the Disability Squeeze
Moving this conversation towards policy action is how we make disability health equity and economic justice a reality. In a panel on policy pathways to reduce the disability squeeze, Nanette Goodman from the Burton Blatt Institute moderated an exploratory discussion of immediate steps toward policy relief to combat the disability squeeze. AAHD’s Director of Research and former NIDILRR Director, Dr. Anjali Forber-Pratt outlined some key places to start (edited transcript with her remarks shared here):
Nanette: Our research found that disabled people spend 20 cents on the dollar on their disability related expenses and more than two-thirds report unmet needs for disability related things that they need to fully participate and live. In your view, what are the most immediate policy implications for these findings?
Anjali: Policy-wise, we need to raise the asset limit. Many states follow Social Security Income asset limit, which is $2000 for an individual and only $3000 for a couple. There’s been a lot of coordinated efforts in recent years to try to address this issue, but it’s still a very significant barrier for many. In the disability community this is sometimes referred to as the “Marriage Penalty” on how much an individual can earn and their savings and assets when it’s combined with their spouse or partner. These levels haven’t changed since 1989. That’s something that’s a really huge policy implication that’s keeping the pressure of the Disability Squeeze alive and well, which we need to combat.
Secondly, I would say we also need to dissect durable medical equipment reimbursement models, both for Medicaid and Medicare, and for private insurance. More specifically, items such as grab bars, shower chairs, and raised toilet seats are generally not covered by insurance and have to be purchased out of pocket. Other such things include supplies for bowel programs and catheters. These are extremely hard to get covered, even in part with any of those insurance models, and these are essential items for people’s livelihoods to be able to use the bathroom and get clean. But these are considered items of convenience, not as essential. And to me, this is just bonkers.
This doesn’t even get at the bigger ticket items like transportation where it’s laughable the tiny percentage that might be covered. For example, if you buy a new vehicle – this only works with new vehicles – many manufacturers will reimburse you up to $1000 for accessible modifications, but even just basic manual hand controls and proper installation runs about $3000. Fully accessible vans are closer to around $130,000 mark, and everything in between. I really believe that this is another very important policy area that we have to begin to address. The cost of living as a disabled person is growing exponentially, and there’s going to be deadly consequences in the years to come, both for me and my friends.
Nanette: Given the difficult political environment, what should researchers and policy advocates be doing to fight the Disability Squeeze?
Anjali: First and foremost, we must collect disability data, and we must have policies that require this data collection. Everybody needs to do this. Disability is a demographic and disability data are essential for better understanding the despair impacts of this squeeze. To be able to truly account for those historical discriminatory policies and the impacts of that that affect black and brown disabled communities more so than others, disability data should be considered an essential demographic. That means that it’s collected whenever other demographic data are collected. Then going one step further, having requirements from agencies and funders and organizations to actually disaggregate that disability data by race, gender, ethnicity, and other identities. That is one way that we’re able to better ensure that the needs of multiply marginalized communities aren’t hidden in the averages.
I believe we need things like Equity Impact Assessments that evaluate how new policies affect people at these different intersections. In this current climate, to do this, I don’t know what the name of that should necessarily be called, maybe it’s a Population Impact Assessment. We have to be conscious of the environment that we are in, and I know we are in a very different world, but I would say we also have to stay the course and work with individuals to try to make a difference in the places that we can. And one of those big ways that we can make a difference is by actually collecting some of these important disability data as a baseline. So, I would say, keep researching, keep collecting the data. For the researchers: Keep publishing, keep creating credible bodies of evidence in whatever mediums are possible and are safe for you to do so.
Joining for this exploration were two other advocates on the frontline of transformative disability policy work: Ly Xīnzhèn M. Zhǎngsūn Brown (National Disability Institute) and Kim Hill (New York State’s Chief Disability Officer). They illuminated the nuanced policy gaps that need to be addressed, and innovative policies taking on the squeeze. Efforts are underway to expand ABLE accounts, which are an immediate remedy to asset limits which force disabled people into poverty in order to maintain essential benefits. Pilots in New York state to implement employment-first and model employer programs are also addressing a key driver towards disabled peoples’ independence and agency. Even as the basic needs of individual disabled people go unmet within their own homes, they highlighted the need for universal disability accommodations adoption in the broader community as well. People with disabilities carry greater time and financial burdens to meeting their needs, whether disability-specific or not. Especially now in this time of economic precarity and inflation, the economic burden is falling hardest on disabled people. With Medicaid under threat, disabled people risk losing essential Home- and Community-Based Services (HCBS) which are another critical program that helps to bridge the disability squeeze. Communities must commit to upholding community living through adoption of Olmstead Plans that proactively assess community integration for people with disabilities that prevents institutionalization.
Looking ahead, we need to see more supports and services that are both affordable and accessible, in order to truly meet the needs of the disability community. A multisolving approach is needed to build inclusive communities. As this government shutdown poses a major barrier to furthering interdependent community living for disabled people, we want to affirm that public programs are essential for our communities. We need evidence-based policies and good faith political negotiations to end the economic crisis for all people, and especially those of us living through the disability squeeze.
This work continues, and we hope you’ll join us in it:
- Follow AAHD’s policy work through the Disability & Public Health News.
- Visit the Disability Squeeze initiative to learn more about this research and the work that’s needed to combat the cost-of-living crisis for people with disabilities.
- Follow the Disability Economic Policy Research Consortium to dive deeper into the research needed to envision a more inclusive country for all of us.