Yesterday, s.e. smith wrote a very interesting post at FWD/Forward about forced institutionalization. Specifically, ou discusses a recent legal victory for a woman whom Medicaid tried to force into an institution in 2008. From there on, however, s.e. continues to discuss the more subtle ways of force present in a society that devalues disabled people’s independence and autonomy.
The whole story got me thinking about my own situation and the situation in the Netherlands in general. Firstly, legally speaking, we are not as advanced as the United States where it comes to disabled people’s right to live in the community. There is no equivalent to the Olmstead case here, or for that matter any legislation which rules forced institutionalization discriminatory. Here, we rely on a few bits of long-term care legislation which are theoretically supposed to enable people with disabilities to access care in their own communities, but which in practice are full of loopholes.
First in the line of presumed-to-enable-community-services regulations in the Netherlands is the Community Assistance Act of 2007. This bill moved some home care services away from the national long-term care insurance into the local social care system. The idea was that local communities know their residents best and are best able to provide for their needs. The reality is that some cities grant people more services than other cities, and most people lost services as compared to before the Community Assistance Act. Besides, quality of care went down with along-the-way privatization.
Second and most promising came, in 2008, the “complete pacakage at home”, which is, in theory, an innovative way to get people with disabilities care equivalent to an institutional setting but in their own communities. People can, if they have funding for residential care, request their care provider to provide their services in their own home. However, the biggest loophole here is that the care agency decides whether they want to provide this type of residential care at home. Alternatively, people can, also as of 2008, access a personal care budget for residential care – personal care budgets used to be open to home care only -, so that they can hire their own care professionals. The problem here is with the management of the care money, which the person with disabilities should be capable of themself. Besides, health minister Klink just closed personal care budgets to new applicants until the end of 2010, so those who would, with a personal budget, be able to live in their own communities, are possibly forced into institutions again.
However, even if the law were perfect, which it isn’t of course, that wouldn’t mean all people with disabilities could get the support they needed in the setting they desired. As s.e. writes, legislation doesn’t change bad attitudes. Lack of access to information can be one barrier to individualized care even if the law is behind you. Lack of resources or skills to fihgt a legal fight can be another. I, for one, have the theoretical knowledge to know that I could, maybe, live in the community with the services I need, but I do not have the ability to fight for this.
Besides, the risks of such a non-conventional care arrangement are quite high. Should your support funding be denied – which is easily done with both home and residential supports -, should an agency refuse to provide in-home residential care, or should you not be able to find a care provider, you’re stuck in your own home possibly without care. I, for one, have had more than enough experience with falling apart while in my own home and the consequences it had, that I’m simply too fearful to undertake such a risky care path, even if it could enable me to live in an environment I choose.