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Deinstitutionalisation: Suing for the Right to Live in Our Communities

I am currently in the lovely city of Chicago, and as I often do when I travel, I started my morning by reading some local news outlets. I always like to see what’s happening in the places I visit, even if I am mostly shuttling between airports and hotels and meetings and things. (And I was also curious to see if anyone had a report on the large number of emergency vehicles whizzing towards the lake last night.) It’s also an interesting test of a community, to see what kinds of items their papers think are important enough to be considered front page news.

In The Chicago Tribune, one of the leading stories this morning is about an Americans with Disabilities Act (ADA) suit filed by Stanley Ligas, a 43 year old with Down syndrome who wanted community-based care, not institutionalisation. Ligas won, and Illinois has six years to get into compliance with ADA, giving 3,000 people the choice of community-based housing and care. They can choose to remain in institutional settings if they want, but they finally have an opportunity to live in their communities, rather than being isolated in institutions.

The ADA includes a clause known as the integration regulation; put simply, if a disabled person can be served in the community, she must be provided with that choice, rather than being forced into an institutional setting. Anyone who is eligible for community-based services is entitled to ask for them, and the state must comply. This was affirmed in 1999 with the landmark Olmstead vs L.C. case, almost 10 years after passage of the ADA. In the Olmstead decision, the Supreme Court indicated that forced institutionalisation amounts to discrimination against people with disabilities, by segregating us and separating us from our communities rather than allowing us to be integrated.

Unfortunately, despite a legal mandate, forced institutionalisation still happens. Many states will do things like only offering disability services to people who agree to live in institutions, as occurred in Florida, where Michele Haddad sued for community-based care after Medicaid attempted to force her into an institution after a car accident. The Department of Justice has been on a tear over the last few years with ADA enforcement, actively pushing for deinstitutionalisation in numerous states, and cases similar to the one in Illinois have been erupting in US courts; Georgia, for example, recently had a similar suit.

The battle for deinstitutionalisation is important; there is a long history of a culture of fear and hatred of disability, where people with disabilities are locked up and concealed, hidden away from society. Not that long ago, people with developmental disabilities were hidden in institutions for life by parents who didn’t even tell their children; ‘dead’ siblings were sometimes very much alive, and not very far away. A culture of shame surrounded disability, and thus people with disabilities were forced into isolation, rather than being allowed to live out among their communities. This has also created a social and political structure that encourages the isolation of people with disabilities, even when they and their families do not want to turn to institutionalised care.

The structure of disability services in the United States creates situations where people with disabilities are often forced into institutional settings if they want adequate care and services. This can mean separation from family, friends, and everything that someone knows. It can mean tremendous isolation, and a lack of enrichment. Many people in institutions experience depression and other mental health conditions related to the stress of isolation and confinement. Some express a wish to die because their living conditions are so abhorrent. Abuse in institutions is rampant, from neglect to sexual assault.

Institutions can sometimes be little more than warehouses for human beings, where people are provided with indifferent ‘care’ and little in the way of emotional support. Friends and family may accept insitutionalisation because they feel like there is no other option. They may not be able to care for a disabled person at home, and thus believe that as awful as the choice is, an institution is the best option to make sure a family member gets the right care. For mentally ill youth, the complete lack of support means that the other option may be prison. Limited community support means that people are forced to make terrible ‘decisions’ because they don’t see any reasonable alternative. There is a belief that there is a dichotomy with only two options, care at home versus care in an institution, when in fact community-based services are a third option.

Much of the caregiving burden is placed on women in particular, which is a serious and ongoing issue. Caregivers may be forced to quit their jobs to provide services to family members, and may receive little to no compensation. If they ask for assistance, help with respite care, they are told that no services are necessary because there’s a family member at home providing care. Social attitudes about caregivers, and disability services, are very much a feminist issue not only because of how they affect the lives of disabled people, but also because of how they affect the lives of their friends and family. Women are tasked with providing care that may be beyond their capacity, like providing high-level assistance without a break for years, and may stretch to the breaking point because they don’t want to put their loved ones in institutions, and aren’t aware of or can’t access community-based care.

While some community-based services do take place in a home setting, they are also offered in small, intimate settings, facilities with six to ten occupants with disabilities who receive support and attention while living in their communities. They can engage in community activities, interact with members of their communities at social events, and explore the outside world, while still being able to access high-level care and support. They can live close to and sometimes with their families, rather than being forced to live apart. From a purely humane perspective, for people concerned primarily with human rights, community-based care should be the method of choice for providing disability services.

But, institutionalization is extremely expensive. Numerous studies document that community-based care is not just better for the lives of disabled people. It is also significantly less costly, and this makes it a wise choice from a purely fiscal perspective:

According to the Arc of Illinois, the annual per-person costs for residential settings range from an average of $55,000 for a group home to $192,000 for state-operated institutions. (from the Tribune article)

There’s a mandate for a ‘funds follow the individual’ approach, where people entitled to disability benefits should be able to take their funding with them to whatever setting they want to live in. For some people, this may be an institution, while for others, it might be community-based care. From a purely cynical and practical approach, the government should actually be encouraging people with disabilities to pursue community-based care because it is so much cheaper. It needs to expend the funds either way, so why not spend less of them, and at the same time, give people a better quality of life, a chance to stay in the surroundings they know, with the people they love?

Organisations like ADAPT are fighting to end institutionalisation in the United States, but this is a battle that will be, and is, fought largely in the courts. Despite a mandate from the federal government, individual states persist in forcible institutionalisation, segregate their disabled citizens, force people into untenable situations like having to stay in a nursing home if they want to continue to get benefits, force parents of disabled children to surrender them to child services to get them access to the care they need.

This despite the fact that evidence-based medicine shows that community-based care is healthier, with better quality of life, fewer medical complications, less emotional distress, and less expense. In a time where numerous states are slashing funding to the bone and seeking ways to cut it even further, it seems obvious to me, at least, that states should be actively promoting less costly ways to provide disability services when those ways are more appropriate to the needs of individuals; this is a win-win where states can save money and people with disabilities can enjoy better quality of life, but we have to sue every step of the way.

That we should have to sue for rights already affirmed by the Supreme Court is an indicator of the contempt with which many people view disability and disabled people, and the hidebound attitudes at government agencies charged with providing us with care and support.


  1. Abby wrote:

    Thank you so much for talking about this! I live in Canada, where there is a stronger movement towards community-based care, but not anywhere near enough. We tend to have a scale from institutions – which are more and more frequently being closed and the cases of abuse coming to the fore – to community-excluded centers where people with intellectual and developmental disabilities go during the day to “work” at group labour like paper shredding and do primarily center-based activities with about 10-15 people per manager/employee and at night they usually go to group homes (like L’Arche ), to community-based programs which are finally beginning to multiply where – in the case of the model a family friend started and my sister attends – people with intellectual and developmental disabilities, who are able to and want to work part time, go to work at a retail store or restaurant independently for half the day (with on-going support from the program founders) and then go to the gym, library, practice literacy, take classes, etc. for the rest of the afternoon. This final option is much more expensive than the excluded center, but it is an ideal model with 4-5 coordinators and 10-15 participants, meaning the participants get all the support they need, have close friendships with each other, are proving their value daily, and belong to and contribute to the community they live in.

    Everything you’ve just explained I am frequently writing about and I am going to focus my graduate work on, and it is so uplifting to see it being written on a website I respect so much.

    Friday, June 17, 2011 at 11:02 am | Permalink
  2. Abby, thank you for advocating for community-based programs in Canada.

    These kinds of resources have made all the difference for my cousin, who is cognitively disabled and legally blind. His life, and the lives of those around him, are immeasurably enriched by programs that allow him to work, play sports, and live independently with support from provincially-subsidized care givers and from his family.

    This is an important part of what the welfare state should look like. Not to mention cheaper than incarcerating people in state institutions.

    We should all have the chance to live full lives and contribute to our communities, regardless of our labor’s value in the unregulated market.

    Friday, June 17, 2011 at 8:39 pm | Permalink
  3. MikeV wrote:

    I live in Chicago and three of my cousins are likely to enter into this very system. Thank you so much for bringing this issue to our attention.

    Monday, June 20, 2011 at 1:29 am | Permalink
  4. emjaybee wrote:

    In my own family, there is such a story; I never even knew I had a great-uncle until I was in my 20s because he’d been shuttled away to institutional/adult foster care when he was young because he was mentally disabled. I don’t even know what his actual diagnosis was–no one now living in my family really knows the whole story; I was told some story about him sustaining a brain injury as a baby but have no idea if that’s what happened. No one would talk about it.

    I only met him once, after my grandmother’s death, when responsibility for him passed to my mother, who had to leave him where he was because she didn’t have the resources to take him in. He died shortly thereafter. He had a terrible chain-smoking habit and when we visited him appeared lonely and isolated, living in a small house on the property of his foster family. He died quickly of an infection without any family around him.

    Monday, June 20, 2011 at 11:38 am | Permalink
  5. Leficent wrote:

    I would also like to thank you for writing on this topic and for including the ADAPT line. I have added it to my blogroll and I look forward to your future posts!

    Wednesday, June 22, 2011 at 1:49 am | Permalink
  6. Pam wrote:

    I have a sister who is cognitively disabled who loves living in a more community setting. I am also caring for a husband with Parkinson’s and the beginnings of Lewy Body Dementia. I think the reason people are pushed into institutions instead of being offered resources for home or community care is because of the huge backlog of unmet needs. Many family caregivers provide the care their loved one needs at no cost to the state or to insurance companies because the alternative is a nursing home. If resources were provided to support home/community care it would be hugely expensive because lots of families would want to use those services–families who currently cost the government very little because they refuse the inappropriate services that are all they are offered.

    Wednesday, June 29, 2011 at 8:14 pm | Permalink