This was the first meeting of the work group that I (Tom Wilson, Access Living) had attended. It was interesting to see who attended and who did not. In particular I noted the absence of seniors and senior advocates and consumers of mental health services/psychiatric survivors.

The Secretary said this was the third meeting of this group but nothing that happened would indicate it.  It was shocking that she had no agenda for the meeting.  It had been said that no telephone hook-ups would be available  but we arrive after a 4 hour drive to find several people attending via video conference. 

It was indicative by the tone of the meeting that when I proposed a deinstitutionalization committee, the Secretary reacted strongly in regards to the word deinstitutionalization and indicated that they needed a more delicate way to approach the subject. Another indicator was that no move was made to assign people to committees or set up committee meetings, meaning that another month would pass before committees could be formed.

When asked about a time table, the Secretary indicated that it would be a fairly deliberate process and that she thought another Administration would be in office before any thing was accomplished. She did not seem to entertain any immediate actions to move toward Olmstead compliance as an act of good faith or to indicate support for the process.

When we were talking about comsumer choice, it was telling that she chose to emphasize the consumers (or families) right to choose institutional care rather than talk about the injustice of decades of institutional bias.

Another indicator of how they are working on this was the fact that they had decided to evaluate the current waivers  at a previous meeting. In my opinion, a dubious way to begin, as the waivers are part of the problem of a patch work system of community service, when we need a comprehensive approach and that setting some goals of where we want to arrive should be first. But anyway, the fact that new, updated descriptions of the waivers were not ready indicates the possibility of stalling by the DHS staff. Also there seems to be the possibility that they might try to put the current programs in the best light, in regards to Olmstead, in theory if not in practice.

Having worked with Illinois bureaucrats before and having noted a serious lack of good faith efforts to include consumers in policy making in the past, I see the state trying to put a happy face on a process that they do not support but are required to do so because of the Olmstead decision. I see no enthusiasm to reform the current system that violates peoples rights.

The unpreparedness and the slow time tables indicate to me a plan to stall, stall and stall some more.

If the Secretary had been serious about this, she would have asked everyone attending to present their vision of what Illinois should do. She would of had some staff there to give presentations or take notes and present options to discuss and to hear the vision of stakeholders.

After this experience I feel more than ever that we need to develop a political campaign to put more pressure on the state, that is, if we want to see any major gains come out of this opportunity. We know our past proposals have been dismissed but with the weight of the Supreme Court in our corner, Illinois must be pushed to create real choice and to have broad and diverse home and community based services for all who need them.

Tom Wilson,
Access Living