Deinstitutionalisation and the fight for community-based living have been a part of the disability rights platform for a very long time, for a lot of reasons. Hard-won gains, including the ADA and Olmstead, have played a huge role in keeping disabled people out in the community, living their lives independently. These are huge deals, and current threats to the health care and disability benefits system in the United States are raising the very real risk that disabled people will once again be facing institutionalisation to survive. This is not acceptable, and we are counting on the nondisabled community to lobby with us to stop it.
What’s the problem with living in an institution like a nursing home or long-term care facility? For a start, it’s extremely expensive — often more so than living in the community. It’s also really isolating, keeping people out of public life and making it impossible for them to engage socially. They can’t easily make friends outside an institutional setting, have trouble attending events outside the institution, and find their lives limited to the other people who are living there. It’s dehumanising, too, treating people like something to be warehouse rather than human beings who deserve autonomy — people living in institutions can’t make proactive and independent choices about sexuality, relationships, and how they spend their time. It’s hard to find and keep work, with some people barred from working at all, let alone joining community organisations, participating in protests, or just going to see Shakespeare in the Park.
Disabled people want to live in their communities, for the most part. They would prefer to be out in society, engaging with everyone on even footing. Some people do need support with activities of daily living, whether that’s a few hours of help a day or a full-time aide — disabled people may need help with bathing and dressing, toileting, eating, feeding their pets, and accomplishing errands. These services are demonstrably less costly to provide in the community and disabled people have fought hard to make the government recognise that — historically, the government sometimes provided benefits in a way that forced disabled people into institutions (‘We won’t pay for an aide, but you can live in a skilled nursing facility’).
Why are disabled people worried? Because the incoming presidential administration has already indicated that it wants to gut Medicare and Social Security. Medicaid funding is also at risk. The Affordable Care Act is similarly slated for substantial overhaul. A myriad of other programmes that provide assistance are also at risk thanks to funding cuts and policy shifts. The options for disabled people are about to narrow, and the civil rights gains that have supported the fight for deinstitutionalisation are eroding. Disabled people may find themselves presented with two options: Figure out how to support yourself, or go into a nursing home. One of those things is a nonstarter for people who cannot magically afford tens to hundreds of thousands of dollars in medical and personal assistants’ bills annually.
Disabled people are already frightened about many of the implications of upcoming policy shifts, but for people at risk of being forced into institutions, this is huge. Despite the ADA, the government still pushes people into nursing homes. Despite Olmstead, this is still happening. There are disabled youth today living in eldercare facilities because they cannot get community-based services and they need skilled nursing help. It’s not okay to warehouse older adults in these facilities, and it’s not okay to do it to youth either, especially since the services provided in eldercare facilities don’t necessarily meet the needs of disabled youth.
What can you do about it? Get active and engaged with healthcare and benefits policy. Push your state and federal legislators to proactively protect and expand benefits programmes that ensure the right to access community-based services. If they’re liberal, make it a civil rights issue. If they’re conservative, make it about money — because community-based living will save money. Tell them to oppose plans to roll back government programmes and benefits pertaining to healthcare and disability, from ACA to state departments that help cover in home support services.
If you want to keep track of what is happening in your community, locate a nearby center for independent living (try Googling ‘center for independent living nearby city’), and also follow your state’s disability rights organizations (‘disability rights my state’). The National Disability Rights Network can also be helpful. Use their action alerts to drive your own activity. If they have news about an issue but haven’t yet formulated a specific action recommendation, create an action around it. Follow disabled people in and around your community who are active on policy advocacy to see what they’re talking about, and offer your support. (Not: ‘What can I do?’ but ‘I saw you mention H.R. Whatevernumber, I’m planning on writing my legislator about that and was going to post a letter for other people to copy, are there additional ways I could support you?’) Make sure you follow diverse disabled people with a variety of impairments and approaches to life, but also a variety of intersecting experiences: Follow disabled people of all genders and sexualities, of all races and religions. When people argue with each other, watch and learn, take notes, do some reading, understand the root of that discussion so you can make informed choices about what to do (to, for example, support or not support a given initiative).
The disability community needs you, if you’re nondisabled, to commit to backing what are likely to be a number of years of both key and stressful civil rights battles.
Image: Wheelchair, Max Wei, Flickr