I find myself feeling conflicted about a political tug-of-war that will affect my children. On one side is the residential facility my oldest son attends (which is a good place) and all other residential centers (most of which are bad). They've historically had the upper hand with the state legislature. On the other side are the advocates of community-based care, who want to empty the residential facilities and provide supports for the MR/DD population to live at home.

I have one child in each situation right now. There is a bill in the legislature that would phase out all of the facilities and move the residents into community-based situations. The bill also would also open more "slots" for kids on the MR/DD services waiting list (it's about 8-9 years long now). Between medications, respite care/personal care attendants, and other costs, raising autistic kids is extremely expensive. We get very minimal state-supported services at home for our younger son right now; the full array of MR/DD services is probably about 6 years away. Older son's residential services, OTOH, are fully funded via the Medicaid program. We had anticipated a 4-6 year wait to get him into his facility; however, their waiting list suddenly moved. They have a long waiting list there too, as there's a moratorium in place on expansion of residential treatment facilities.

My concerns about the bill are these: 1) it would close down the good facilities along with the bad ones; 2) the legislature would commit to opening slots for kids on the waiting list, but as the kids coming out of institutional care would suck up all the money, the new slots would not be funded, making the wait even longer; 3) the community-care agencies are already understaffed and their employees are poorly paid, and there would not be adequate assistance available for everybody to have their needs met; and 4) local school systems will be unprepared to provide educational and ancillary services to the wave of MR/DD kids that will hit them. Fortunately, my fourth concern is inapplicable to my own local school system.

I have always leaned towards community-based care so that we can keep our kids at home. However, I see my oldest son doing well in his new setting. Moreover, my suspicion is that the groundwork hasn't been done here to really make that work and that the community-care advocates are seeing pie in the sky as far as funding goes. On the other hand, the advocates of facility care need to realize that the national trend is moving in the opposite direction and that many families would like to have their loved ones out of the institutional system. I would hope that some kind of compromise could be reached that would keep the good facilities open and allow those who wish to transition back into the community to do so.

We should know in the next few weeks how this political battle will shape up and shake out. I'll probably be writing to my legislators about this. They'll be baffled, as I've already taken both sides of this issue in letters to them in previous legislative sessions, albeit with qualifications.

Politics. Shit.