Margaret Jean “Jenny” Hatch is an American woman, aged 29, with Down’s syndrome. Until early last year, she lived independently in Newport News, Virginia, and had been working in her friends’ store. She had an active social life and according to the Quality Trust for Individuals for Disabilities, an organisation which campaigns for the rights of people with developmental disabilities, counted “past and present members of the Newport News City Council and the Virginia General Assembly” among her friends. In March 2012 she was involved in a road accident while cycling, and briefly moved in with her friends but because of a dispute over who was to pay for her care, she was forced to move into a “congregate setting”, i.e. a “group home” (or care home as we call it here in the UK), which confiscated her phone and computer, rendering her unable to communicate with her friends. Since then, her mother and stepfather have petitioned for guardianship and have insisted that she remains in the “home” against her wishes. Her mother acquired temporary guardianship in February and her case comes to trial early next month. (I first heard about this story through the blog of Rachel Cohen-Rottenburg, Disability and Representation, and a more detailed story, as of last November, is there.)
Clearly, in many cases involving social services and guardianship, it is difficult to gain an accurate picture of the situation because only one side is able to speak and to a large extent, you have to take them on trust, or not. I’ve reported stories here in the past involving children in care, and on one occasion ended up withdrawing my support because the parents’ actions made me suspect that I was not getting the whole truth. In this case, the person affected is an adult, albeit one with a developmental disability, whose wishes have been clearly expressed in a number of interviews with local media which can be viewed online. Her mother could speak, if she wished, but was last seen leaving court, flanked by local policemen, refusing to comment. Worse, her father has cracked Jenny’s Facebook account, as I discovered when I mentioned their reportedly negligent record as parents and received a message from him, using her account, as the screenshot next to this paragraph demonstrates.
Jenny’s friends run a Facebook page, Justice for Jenny, through which they have kept their supporters abreast of developments and posted links to the local media’s coverage of the legal process. It has to be said that if this was happening in the UK, the media would likely be barred from reporting it and no public discussion of it could take place, although in the case of a person with Down’s syndrome (quite unlike the situation with autism, as the Neary family found out to their cost a couple of years ago, although the Court of Protection found in their favour in December 2010), this is in any case much less likely to happen in the UK as there is a stronger presumption against keeping someone in a “home” when they can live independently. They have reported some disturbing details, among them that friends who have seen Jenny on trips to the church have said that she has become more withdrawn and is no longer as demonstrative to others as she used to be. During the guardianship hearings earlier this year, Jenny’s court-appointed guardian ad-litem, who opposed Jenny being able to live with her friends as it would result in her further estrangement from her mother, had put out a bowl of sunflower seeds for Jenny’s mother to eat, clearly not a gesture of neutrality.
Parts of the United States is in many ways behind the UK in terms of ensuring that people with disabilities, even perfectly capable physically disabled people, are able to live in their own homes rather than in a “home” with other disabled people or, all too often, people far older than them. Disability advocates often point out that nursing home care often costs much more than the cost of enabling someone to live in their own home (or even with their families) but that an entrenched nursing home industry and an aversion to using public taxation for “handouts” stands in the way. While the money argument makes sense, however, this is not primarily a matter of finance but of civil rights and freedom, of keeping families together (where appropriate) and of protecting vulnerable people from abuse and maintaining people’s dignity. I don’t doubt that there are many people with developmental disabilities living in care homes because they are not able to make decisions for themselves and their families decided that was the best for them, and that some of them are quite happy; this is rather different in that it involves someone who lived successfully in the community for several years, with the apparent consent (or indifference) of the people who are now demanding she lives in a “home” against her will, yet has been moved from “home” to “home”, been silenced in court and then forcibly removed when she made her wishes clear, who has made her opposition to having to live in a “home” quite clear at every opportunity, and is still being forced to live in a “home” and still forcibly separated from her friends and employment.
I use the quote marks around “home” here not because I don’t believe a care home can be a real home and a good home, but simply because it’s not Jenny’s home: she has friends who are willing to give her a home, but she is not being allowed to see them or speak to them. This is in clear breach of her civil rights; she is an adult, with a developmental disability but not one that is so severe that she is incapable of living her own way, albeit with some support. This whole situation should have been sorted out round a table some time ago, and she should have been allowed to live with her friends in the interim, as was her wish, not forced to accept some stranger’s textbook idea of “her best interest”. She has now secured the services of an attorney from the Quality Trust which has featured Jenny’s story on their Facebook page, and the case has gained much (almost entirely sympathetic) local media coverage. We can only hope the judge sees sense when her case is presented. It further underlines why we in the UK should maintain absolute opposition to the fragmentation of the NHS and the slashing of funds to social services and of disability benefits which enable people to live independently, because there is no dispute about who pays for healthcare here, and if people cannot access the resources they need, they will be thrown on the mercy, such as it may be, of friends and family who do not always have their best interests at heart.
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