In 2007, Florida resident Michele Haddad was involved in a motorcycle accident with a drunk driver. She incurred a spinal cord injury that led to quadriplegia, and lived at home until she lost her caregiver and Medicaid informed her that she would only qualify for the services she needed if she spent 60 days in an institution. Aside from making absolutely no sense, as often seems to be the case with Medicaid bureaucracy, this barrier to accessing care was also highly discriminatory.
Haddad sued, arguing that she would suffer ‘irreparable harm‘ by being compelled to enter a nursing home, and the court agreed. The State of Florida was ordered to provide her with the community-based services she requested and was entitled to. Haddad will be getting a caregiver and staying at home, and we can chalk down another victory for disability rights. This is huge and I am really pleased by the positive outcome in this case. Haddad wanted to stay at home, she should have been allowed to stay at home, and it is heartening to read that the court ruled on the side of justice, bodily autonomy, and independence in this case.
The United States Government was also involved in the case, arguing on Haddad’s side. The Justice Department is currently fighting several discrimination cases, many of which build on the landmark Olmstead vs L. C. case that cleared the courts 11 years ago. Speaking about the Haddad case, Thomas E. Perez, Assistant Attorney General for the Civil Rights Division, said:
In the Olmstead case, the court recognized that the unnecessary segregation of individuals with disabilities stigmatizes those individuals as unworthy of participation in community life. By supporting Ms. Haddad in this case, we seek to ensure that individuals with disabilities can receive services in the most integrated setting appropriate, where they can participate in their communities, interact with individuals who do not have disabilities, and make their own day to day choices. (source)
I’m excited to learn that the Department of Justice is cracking down on discrimination and is specifically selecting cases that will promote full integration into society for people with disabilities. As I discussed a few weeks ago, passing antidiscrimination laws and winning victories in court isn’t enough to put a stop to discrimination and ableism, or to the social attitudes that allow for the dehumanisation and abuse of people with disabilities, but these cases do make a difference, and the direct involvement of the government shows that there is a genuine desire to address disability discrimination and to fight it.
Forced institutionalisation, as almost happened to Michele Haddad, has a long and very sordid history in this country. A common problem that I encounter in discussions about it is that it is not always recognised as such. The Haddad case seems fairly clear-cut: She clearly stated that she wanted to stay at home and she was told that she would lose services if she didn’t enter an institution. That sounds forced to me, and it sounded forced to the court, and most of the people discussing the case seem to agree.
But other cases are less clear. A lot of people with disabilities are not provided with information they could use to make choices independently. They are pressured by family members or care providers. Someone in a situation similar to Haddad’s might not be aware that home care was an option. All it would take is being whisked into an institution from the time of an accident and deprived of access to information suggesting that there are alternate modes of care. We see the same thing with decisions about medical care, where people aren’t provided with information and options, but simply told what to do.
‘Forced’ is a slippery word and it is not uncommon for people who want to deny that forced institutionalisation happens to find ways to weasel out of confronting it. After all, if you don’t say the word, it’s not happening, right? This persistent denial is one of the things that makes it so difficult for us to confront the real-world consequences of ableism. If we can’t get people to talk about the fact that forced institutionalisation happens, we can’t get people to talk about why it happens and we can’t get people to fight it.
Forced institutionalisation is not the only denial of rights and autonomy to people with disabilities that people think of as a thing of the past and believe doesn’t need to be addressed, countered, or fought any more. As a result, when we attempt to have conversations about these very real, very structural, and very present issues, we meet rhetoric like ‘oh, well, that doesn’t happen anymore, right? It sure was sad when it did, though.’
Michele Haddad, and thousands of people with disabilities all over the world, can personally testify that forced institutionalisation is not a thing of the past; here in California, for example, disabled activists are currently protesting cuts to In Home Support Services, a program that is vital for people receiving home care. Those funding cuts will result in institutionalisation for people currently receiving IHSS services.
I struggle with this whole thing, as an institutionalized person. I was never forced, in the sense that I have always been an informal patient. However, I fell apart in 2007 despite 16 hours of home support a week – something far higher than you could get today, since they cut budgets in 2009. I tend to assume that in every other case, community support should be allowed, but in my own case, I was/am clearly too bad for home services. Nonetheless, I recognize the impact my “decision” to go into an institution, has. For one thing, I can’t live together with my boyfriend. I know that I should be able to get into something that would enable me to get home support (if they haven’t cut it again), but it is a struggle I cannot fight. It is good to hear that some people are willing and able to sue for their rights, but I’m afraid there will be not much result for those who cannot/won’t sue.
It should absolutely be the person’s choice whether they receive home care or institutional care. I applaud her efforts … but don’t think it shoudl be that hard for anyone to receive the proper care.
I also feel that the drunk driver who hit her should be on the hook for paying for her lifetime care, or at least their insurance company should, rather than the state.
All I have to do is here “but things have changed…” to throw me into complete and total rage.
Also all the rhetoric about choice always bugs me — in an ideal world institutions wouldn’t need to exist because anything (yes, anything) good that is done inside them could be done outside them. (People who don’t realize this tend to seem to me as if they’ve never even thought carefully about the matter — like a commenter on another post who said nursing homes provide community, as if noninstitutional buildings and communities for elderly and disabled people don’t exist.) Simply saying they should exist but people should have a choice is not going far enough because there will always be ways to force people into institutions until there are no institutions. The idea that you can remove them and replace them with something entirely better (and usually cheaper) doesn’t seem to cross people’s minds. There is always (always) a better way, and when people concede these places should exist, they are letting people off the hook for failing to try to be creative and come up with something better. (And if one person can’t imagine it then someone else usually can.)
Not to mention that cuts in community based services will be more expensive in the long run.
Think about it, New Jersey is having an unusually high rate of people with developmental disabilities institutionalized. Assemblyperson Lou Greenwald is sponsoring a de-institutionalization bill which would create better community based services (ie: group homes).
I crunched the numbers, a high functioning person with developmental disabilities could be sent to one of those Camp Hill communes with the state of New Jersey.picking up the tab, and it would only be 1/8-1/10 of the price of institutionalizing these people, and have a chance at a better life.