29 June, 2012


Writing this in a rush because I’m trying to get myself fed and watered before work, but this is really important and the deadline for public comment is Monday so if you could link it and write in if you have experience/knowledge with these issues, it would be pretty helpful to disabled people who are on Medicaid.

Medicaid Program: state plan for home and community-based services (click “Comment Now!” to share your feelings)

The Administration on Intellectual and Developmental Disabilities wrote an explanation of the situation that is a little easier to understand and here is a PDF about it that is written for disabled people.

This is me trying to explain it and almost dislocating my brain, have fun with this:

The long-term plan is that disabled people who might otherwise end up living in institutions because of their support needs will get “home and community-based services” (HCBS) instead, which means not living in an institution. This is actually less expensive to the government and obviously it leads to a better life for people with disabilities.

However some disabled people feel that the definition of “home and community-based services” needs to be more strict because otherwise, providers could make disabled people live in settings that are basically institutional settings disguised as something else. States get a financial reward from the government for moving people out of institutions and into the community, so there is a motivation to cut corners and try to categorize things as “HCBS” when they really are more of the same old thing.

For example, redistributing the residents and staff of a large institution into a bunch of houses and continuing to run everything the same way as before is not “moving those people into the community.” They are still in an institution, even if you call those houses “group homes” or “shared apartments.” There are also other ways to disguise an institution as HCBS or make HCBS into an institution.

As the Autistic Self Advocacy Network points out in their public comment on defining HCBS (which I highly recommend), denying someone housing unless they agree to receive certain services is something that makes a housing setting institutional. If someone doesn’t have a choice about what services they receive and they could get kicked out of their housing if they say no to certain services, then they obviously aren’t being supported to live independently, they are being threatened into compliance. ASAN also suggests that providers should not have the right to break rules about what HCBS is, just because they argue it is in the best interest of a particular disabled person. There should be some rules that can’t be broken, so that a disabled person’s supposed needs can’t be invoked to take away their freedoms (for example, the freedom to lock their door, have friends over, or decorate their living space).

I admit that I find policy stuff almost impossible to read and I’m guessing that is even more the case for the average person who has direct experience with institutionalization. But if you really think about this, it isn’t as complicated as it seems, and they really want to hear from disabled people. You should write in if you have something to say about how home and community-based settings should be defined, especially if you can write from your experiences or the experiences of disabled people you know.


  1. I commented! I read the regulation, with particularly close attention to how they define "home and community based services," "person-centered service plan" etc. It all looked pretty airtight to me, with the exceptions that ASAN pointed out in their statement. I was especially impressed that they also laid out a bunch of rules governing how the service plan is to be drawn up, and that the whole process has to be led by the person receiving services, and has to include people chosen by that person, and the person gets to choose, not only what services they get, but who provides them.

    ... and I just thought of something I forgot to include, I'll see if I can leave another comment. I should've added something about how to make sure people who can't just walk into a meeting and speak coherently about what they need get their wishes known and honored, too. Like, to put the onus on the other planners, the service providers, state officials and whoever else, to let the person use whatever their chosen means of communication are, and not push them aside in favor of a caregiver representative just because they can't communicate in a form that's more convenient for non-disabled people.

  2. Okay, you CAN comment multiple times! Yay!

  3. wow you READ the regulation? holy shit