By Jeremy Einbinder
Many facets of life could help ensure equality and equity for people with disabilities, and one of the most fundamental is home and community-based care.
Given the prevailing tendency in disability rights discussions is to attempt to give people access to a so-called “least restrictive environment,” it stands to reason that every person be provided with whatever resources necessary to ensure care can be provided, and that they will not be separated from their home, or their surrounding community filled with a variety of people in order to fulfill those needs. To do so would almost certainly ensure subpar quality of life and care, discrimination, and segregation. An article in USA Today detailed the specifics of the recently passed American Rescue plan in regards to disability, describing it thusly:
“The American Rescue Plan, recently passed by Congress and signed by President Joe Biden, allocates $12.7 billion for what’s known as home and community-based services, or HCBS, through 2021. This is truly something to celebrate — finally dedicated funding to support people with disabilities who want to get back to work.
HCBS is an important source to keep people with disabilities at home, in their communities and out of costly nursing homes or group living setting, where we now know COVID-19 thrives. And it provides a critical lifeline to employment.”
As important as HCBS are to the disability community, there is a possibility that those services are insular and can ostracize people who receive them. In much the same way that the pittances of the welfare state can be dehumanizing, so too can any means-tested program of any kind. In the past, Disability In Focus has talked about the importance of universal design in regards to accessibility. The same applies to communal support of any kind. Take the issue of universal healthcare.
While it is true that single payer healthcare, in its currently proposed iterations that are supported by many people within the US government (though not by the President) would abolish private insurance, there is no indication that additional expenses related to disability, such as mobility equipment, would be free of charge. In the current paradigm, just as with “public option” proposals, any piecemeal welfare programs offered by the state would continue to be massively underfunded, and the lack of its universal nature would continue to stigmatize those who need it most.
Any means-tested program has the enormous potential of leaving people out of that program who need it. Home and community-based services, like all forms of accessibility within the capitalist mode of production, seem to be no exception.
An NPR article clarifies,
“Many people assume that Medicare — the nation’s health program for 61 million older adults and people with severe disabilities — will pay for long-term care, including home-based services. But Medicare coverage is extremely limited.
Medicare covers home-based health care services only for older adults and people with severe disabilities who are homebound and need skilled services from nurses and therapists. It does not pay for 24-hour care or care for personal aides or homemakers. In 2018, about 3.4 million Medicare members received home health services.”
What is a “severe” disability? Who gets to decide who qualifies for services? It is clear there will be at least some people who need or could substantially benefit from receiving services who do not get them. Some people will potentially receive services they don’t need and miss out on ones they clearly do, and there are potential services that the government may not thought of that could be potentially liberatory for people with disabilities.
The function of the state as it exists is at best to sustain the lives of disabled people, but never for them to thrive, and this is especially true considering the perpetually miniscule amount of money someone is “allowed” to earn in order to stay on Social Security Disability Insurance. There is a perverse incentive for a person with a disability to stay poor for the benefits they need in order to survive. With the job market already thin for disabled people, and the regular discrimination in the hiring process, and no guarantee that any job they do get provides enough money or separate benefits to provide for all of their needs, is it any wonder that people with disabilities remain disproportionately in poverty?
The problem we need to solve is marginalization of disabled people. Even the expansion of at-home services may continue to be isolating if we do not live in a welcoming and accessible surrounding community in which all different kinds of people function. Perhaps a live-in hotel or apartment staffed with health aides and medical staff, on-call if needed, could be viable.
We need workplaces in surrounding communities where we can thrive and make a livelihood, ending poverty and the stigmatization of “living on the dole” whose services remain perpetually in danger of being cut.
We need to be assured a comfortable existence whether we can work or not, and any services, benefits and any and all material needs related to disability unconditionally covered, and we need people with disabilities themselves to determine what those things are. Only at that point can we ever be assured to truly exercise autonomy and simultaneously not feel so alone.
Around 30 years or so removed from the passage of the Americans with Disabilities Act and general commitment from the powers that be to help the disability community, it is clear that piecemeal approaches leave a lot to be desired.