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Fix Definition of "Supported Living Services"

Before I moved to Minnesota from California, I knew what supported living was. I attended TASH and ARC conferences and people from all over the U.S. could understand the term. When my father got sick, I explored moving back to Minnesota and did a lot of research about services: MN had Metro Mobility, great-sounding day programs, spoke the lingo of person-centered planning. I found a brochure, "Report Card on the States" stating that MN was 6th in the nation in Supported Living.

This led to a confusing three month period where I spoke one language to social workers and they spoke another back to me. Something like, "My daughter says she wants supported living". Social worker handed me a list of 40 group homes; I spent hours calling each and every one, thinking they were buried in the list somewhere.

I tell the social worker he gave me the wrong list, there was only group homes on it. Thinking, of course, it was a mistake. No mistake. So, I patiently explain what we are looking for. Social worker says, "That wouldn't be good for her, it would be isolating and she wouldn't be safe." I respond, "Well, a supported living agency which leaves a person isolated and not safe is not providing adequate services, what do you mean? That you don't have adequate supported living services in Minnesota? I don't believe it, ARC says MN is 6th in the nation!" Thinking the guy didn't know what he was talking about, or was trying to hide something from me. And so on.

Finally, Jerry Mellum arrived in my home with the frustrated social worker. He translated for a while leading to me understand there was no real supported living here, and at least convincing me that CDCS would be helpful. How can people ask for it if there is no real word for it here?

Support Managers

The Support Managers I have met are amazing people. They are where the rubber hits the road and tend to be very involved (forget clinical distance here) and impassioned. They are responsible for a lot of people out there in situations of their choosing but, if the supports are not right, there is danger, it is the real world. The money is never quite enough, solutions need to be creative and involve the community. California supported living agencies are not licensed and so this doesn’t hamper creativity. They also know their clients personally, not only in meeting rooms, but in the community, in their homes, as real people.

I used to think of them as sort of a clone for me. Truthfully, nothing will ever replace me as a mother, but I am not going to be around forever. But I need someone who knows her, who is close enough to the action enough to keep an eye out for her, who will be consistent over the long term, and who isn’t so bureaucratic and bound by unsympathetic rules that she could have lapses in caring about Daisy.

Someone should go to California, find an experienced support manager, and convince them that snow is better than fog and rain (not a bad trade-off), and let them know how wonderful our people and our medical system are here. Once you get her (or him) here, give them funding for a pilot program. Instead of licensing, use Voice Review for all her clients, and then record the feedback from families and friends. Take it to an ARC conference. Also record costs / benefits, etc. My suspicion is that you will have people scrambling all over the place to re-create this, and parents demanding it.

Make Voice Review Available Across the State

The ability to choose to use voice review would individualize services enough, in my opinion, that people would become frustrated with grouped services and recognize that they are inadequate for many people. Although they won't have the support to set up individualized support systems for people, many people will find creative ways to help the person have a good life.

Voice review does two things that supported living provides: provides a vehicle to look at the person individually and help them have a good life, and also builds the team around the person encouraging non-paid supports to participate.

Microboards could be a result of more access to Voice Review. Up until now, county licensing/contracting departments have refused to allow single-person residential licenses. But they would have very limited work in regards to Microboards, especially those using the Voice Review as a substitute for licensing. So that should take away the major stumbling block for them, as I understand it.

Amend the Minnesota Constitution

Such an amendment should state that Minnesotans with disabilities older than 18 will choose where they live and will receive their supports there, and that they will get the help they need to communicate their preference by using an unpaid circle of support which knows the person, and that services will be provided separate from housing, in order to comply with the Olmstead decision. I would like it to say that services are mandated (as the Lanterman Amend. did), but the country is in no mood to mandate services at this time. And that every person with developmental disabilities will have assistance with circle building. (spell this out how it should look) And, before we do it, we should study the Lanterman Act, the older and the newer ones.

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