September 22, 2000 Part 2

The director of the state developmental disabilities council is a wonderful lady who talks to me anytime I call, calls me back right away, really is wonderful.

She suggested I talk with a really remarkable guy who is on the Steering Committee for System Redesign in Minnesota, a committee I happen to be involved in, too. So I know Milt Conrath. He works for the human services department in Dakota County which had a self-determination project I believe sponsored by the Robert Wood Johnson foundation. The self-determination option in their county is very flexible and wonderful. Well, Colleen suggested I talk with Milt because he would know about the waiver if anyone would. So his assistant called me back and she knows a lot too, and we had an interesting talk.

They understand the problem of federal waiver money not paying for mortgages. Some things that have been done are licensing the home and using the GRH money for that. Another option is paying the live-in a higher amount (on the self-determination waiver which is allowed) and charging them rent. You can also pay the livein on top of that, there is no rule about how much you can pay the live-in as long as it all goes towards Daisy's supports. This method avoids the licensing requirements that I am trying to avoid.

We discussed licensing and she said she didn't know how complicated it is but that you would need probably to hire someone for it. There are lots of reports to be prepared all the time and they take time to prepare, such as risk management, dietary, health, other things. You have to have inspectors, make sure the home has the right stuff in it, etc.

It made me weary to think about it. She said one family who has 4 boys with autism and have a large allocation has hired a person to be a service coordinator 50% of the time and to do direct care the other 50% of the time -- she is full time. She takes care of hiring and supervising other staff and preparing all reports. We'd probably have to do something like that. It might make sense to share this person with another (or other) families to lower the cost of this service.

I said, why don't I just start a supported living agency? The way I think of, when I say a supported living agency, is an agency that supports anyone who wants to (not dependent on their level of disability) to live in the community. It's like a group home without a home -- they provide a 24 plan of care for several people, coordinating staffing and providing backup direct support if staff doesn't show up and all paperwork.

I asked her if I would make any money doing this, thinking I would have to make up for my teaching career if I had to be on-call for people in their homes, and she said "not initially". Oh boy. A volunteer supported living agency director. That is a huge responsibility. (continued)

September 22, 2000 Part 3

Then a lady named Janel Bush from the state Human Services Department called me back (I forget who referred me to her). She said her position was a fairly new position created for housing, and she worked mostly with elderly but she was somewhat familiar with issues for the DD population.

Turned out she knew a lot.

She said a solution which has been tried only a couple of times that she knows about is that 1) the client owns their own home 2) the client leases it to a support agency 3) the support agency licenses the home 4) and then the client can receive the GRH. That way the agency is responsible for the licensing issues and the client still has ownership of the home.

My question though is really how much ownership does one have if their property is leased out. I didn't say this, but only thought it.

This reminded me that the assistant in Milt Conrath's office who happens to also participate in the state steering committee for system redesign along with me and Milt and other people told me the following: The GRH has been given to the counties to administer and each county now has slightly different regs about the use of the GRH but at this time they all must go to licensed homes. People who are working on this are trying very hard to get the GRH funds (which are state funds, not medicaid) sent to the counties in a block grant with discretion on how to use these GRH funds given also to the counties so that people in group homes who maybe could live on their own with supports can move from a licensed to a nonlicensed setting and still get the support they need.

I am so impressed that people are really working at these things, every time there is something that doesn't seem quite right, people just keep chipping away at it.

September 22, 2000 Microboards

I'm thinking this is the perfect place for a microboard. We could license the microboard, hire a manager, get a couple more parents who want a supported living agency they have control over, and do the licensing thing that way.

Why not?

I have to admit I am really overwhelmed with all of this at the moment, though. It's going to have to simmer for a while before I get the guts to organize all of this in my mind. It's really a lot to start, organize, keep going. However, if we have a good manager, fulltime . . . .

October 4, 2000: Microboard, GRH?
I spoke with the medicaid people, Shirley Patterson at 651-582-1805.

My question: If an individual has a microboard and is well supported by this living in their own home (I defined this as a small nonprofit with several individuals who check on her regularly and have some level of involvement to assure her safety and comfort and involvement with the community), can the licensing requirements of the GRH be waived? Her answer: If it is state law, no variance can be granted to licensing requirements of GRH. If it is state regulation, there is a possibility that the licensing requirements could be waived. She is not sure. If it is state law, contact your representative and ask for it -- Jan to May is the session so laws really can be changed during that period.

October 4, 2000: Medicaid GRH portion
Lori Goetz Medicaid 8 am to 4:15 pm except 11:45 to 12:45 pm, 651-284-0250 at the Medicaid Waiver Help Desk. She said she really likes what I'm trying to do, really wants to encourage it, that my child directs her own services, has her own home. Has been talking to others to find out how to help. Said that licensing is not that big a deal, and I should make a list of what I fear about it. I said that I thought we would be required to prepare a lot of reports, have a dietician, not be allowed to have unrelated adults in the home living with her, have to hire licensed personnel. She said, no, only the home is licensed. We would still have the flexibility in regards to staffing as we do now with our consumer directed waiver. We would not have to have a dietician and could have unrelated adults living there, it would be no problem. Just the home would be licensed.

She also said that if there were something that just wasn't right for the situation in Daisy's case, that we would have more luck bending the rules for licensing since those are regulations not statutes. The GRH requirement that the home is licensed is a statute of MN law and therefore cannot be bent.

Maybe licensing won't be so bad, then, and the GRH would be helpful for her.

October 23, 2000: Daisy's Planning Meeting

Daisy had her PATH meeting yesterday, at 12 noon at church right after the service.

She invited the associate pastor, the children's coordinator (both very overworked people), the choir director, a friend who has helped us, two people from her day program, and some family members. Family members live an hour away and health/car/travel situations did not work out so they could not come. The day program people of course wouldn't come on the weekend. The friend and the choir director both could not make it. But the overworked associate pastor and the children's coordinator both did, and of course we were there.

It was not as thrilling an event as the last one because it was a continuation. The children's coordinator and the associate pastor both wondered why they were there and at the end I'm not sure were convinced of why they were there.

Daisy is very well connected to "activities" and most of them are in inclusive settings, which she herself has asked for and is doing well in. So they didn't see a big need for help, in fact seemed impressed that she was so active: Monday night, Weight Watchers, Tues and Thurs swimming lessons, Wednesday choir, and now she wants to add singing lessons. She also goes out on the weekend with a group designed to support special needs on Sat night, and loves that. I did add that the reason she does all of this is because I'm no longer at school and that I drive constantly in the evenings it seems like. So we are hiring a person to help coordinate paratransit calling and to do some extra support too so it isn't so much on my shoulders. I already had the answer for that.

I guess in a way I was glad that Daisy didn't appear so needy.

We did get around to discussing some jobs for Daisy. Well, Daisy said she was happy at her job but did know a guy who made $200 every paycheck and that would be nice. (hers are $60 or so and she has been running out of money) I mentioned that we have to "separate" our money flows between her and I by the time the house is built, as they are kind of intertwined at the moment which shouldn't be.

We brainstormed ideas for jobs for a while and I asked if we could just keep thinking about it until next meeting, which we set for a month from now. Daisy could take one day a week off from work at OpShop to start and increase it if she wanted to once it started. At a conference, it was suggested that I go to a community college, to the business department where there is usually a group of retired business leaders who volunteer to help people start business plans and ask one of them to become involved with us to think of a plan for Daisy's new business, and I mentioned I would do that.

I thanked everyone for coming and said Daisy would send out invitations for next time. I brought too much food as usual. Only problem with that was Daisy pulled the crackers in front of her and munched throughout the whole session which wasn't exactly good for her weight watcher goals or her appearance (cracker crumbs all over her front), but next time we'll have to deal with that somehow. At least one other person appreciated the food, though.

The planner kept the roll of paper this time and it didn't feel quite as much as if it was all being shoved at me like it did last time. Especially because Life by Design is interested in helping us through this process even if it leads to microboard or something besides their support.

I mean, I understand I am the mom and all, but in May 1999 at our last planning meeting, it would have been nice if someone else had taken at least a token piece. Not even the ARC advocate said she could volunteer anything. They all seemed kind of stunned, as if we were really shooting for the moon. And no talk of another session was made, either, which made it discouraging. Here we listen to Daisy give all her dreams, big large dreams, no one seems to feel any of it is possible, and no one chips in. What a death of the dreams it would have been if Daisy had sensed what I had sensed, but I don't think she was looking at them or sensed that like I did. She was involved with the planners who were pulling the dream out of her. Hmm, that may be why Daisy wasn't eager to invite any service people to this meeting this time. Maybe she was more aware of it than I realized.

Today many of the people invited to that very first planning session May 1999 by now have realized that her dreams really were not impossible. That's because of my hard work (and some very good luck in regards to changes in the system). But I guess it's a good role for me to play, I mean, satisfying, to destroy the negativity of these people by showing them it can be done. Kind of like adding some sunshine to the world. Actually, it's really satisfying to me.

Life by Design, Beth Hawkins, (an agency which provides creative individualized supports, not group solutions) is probably coming to our next session as we continue to forge out a plan for Daisy's support.

We have new ideas of who Daisy wants to invite to the next meeting. We will, of course, continue to send invitations to our family members who couldn't come last time because they might come. But as we walked through our daily life in the two weeks before the planning meeting, we noticed special people in Daisy's life who might want to be included and noted that we should really invite them. For instance, the manager in the building where we live who has been so sweet to Daisy, her swimming teacher who has been really helpful, and so on.

I wanted to convey to people at the meeting that the main purpose, the special thing, the really important thing about this PATH process is not the activities or new business or help Daisy will get from the process but the fact that everyone's brain, at least one little corner of it, is reserving room for Daisy and her needs now. I get the feeling that everyone wants to "do something" right away or the meeting isn't valuable. It was so easy to fill up Daisy's schedule, but she still remains rather isolated in many ways, it is so hard to describe this to people.

For her to join into activities with others, her wheelchair handicaps her if the car is too small to put it in, or if they have to learn how to take off wheels and fold down the back. Maybe we should get a simple foldup thing for times when she could join in more easily if she had it. I don't know, but I think the PATH was very valuable but I'm not sure the people who attended felt their valuable hour was spent usefully. Maybe these busy, busy people really aren't the right people to attend anyway. I mean, it is probably good at first because they know a little about what is going on. And later we could invite in more appropriate people who could get more solidly involved with her because they aren't quite so busy.

Yes, I think we are on the right road here. But we have to get some service people to come at least once to this even if it is on the weekend. Well, if Daisy sees the need to invite them at some point, I guess.

October 24, Met Council: Section 8/Home Ownership/Mainstream Vouchers

I just finished speaking with Mary Ahern in the Section 8 department at Metro Council, 612-602-1605.

I asked if home ownership option would be offered with the mainstream voucher. She told me those are two separate programs.

She also explained that they had received the HUD guidelines for home ownership option in mid-September and expect that it will take 3 to 6 months to determine what they want to do about it, whether they have the capacity to do that and what group they want to offer the home ownership option to.

I asked if there were other agencies they could collaborate with thinking that might help. She said they are going through a very careful process in the next few months determining if there are any other agencies including Home Choice, etc. who they could work with. They don't know yet what they are going to do as it hasn't even gotten to the board yet. But they know they will carefully think all of that out.

She thanked me for my input (saying how important an option home ownership is for people with developmental disabilities and that often they have resources such as supported living agencies who can assure that the mortgage/maintenance is kept up) and said it could be longer than 3 to 6 months but at least that.

She said I should call 651-602-1553 this Thursday and request an application for Section 8 (mainstream is no different than applying for Section 8). I said maybe we weren't ready for this, if it came up before we had the funding, etc. She said, well the waiting list at present is about one year and we really should get on the list right now.

So I will do that.

November 1, 2000: Getting Help With a Microboard for Daisy!

We're getting help starting a microboard, from a real lawyer who is a parent of a kid with disabilities. She instantly understood what I was talking about, even though she'd never heard of microboards.

I told her one thing we wanted to use this nonprofit for was to "own" the house Daisy is to live in. Then she can rent from it, and others can rent from it. Section 8 might even be possible without the home ownership option, too.

I have been griping to everyone I see about not finding what I want for Daisy's support once she moves into her new home. You probably remember I want, of course, the impossible:

* either, a supported living agency which takes 24/7 responsibility the same as a group home but isn't huge, a small agency, not just a re-make on a group home sending in staff rotations but an agency which uses personal planning, generic support development, etc.


* a microboard, managed by a bright person who wants business experience and who likes Daisy, well, you get the idea. Maybe she manages other microboards if other people decide to try this, too.

Well, not finding the former, I've been talking about starting the latter (a microboard), and finally griped to the right person: Colleen Wieck, the director of the Governor's Council on Developmental Disabilities here in Minnesota.

She gave me the name of this attorney named Lori Guzman who knows a lot about conservatorships, guardianships, etc. Turned out to be a great resource, because Lori teaches a class at a nonprofit university which is not allowed to charge me if her students and herself help research the legalities involved in starting a microboard here in Minnesota.

The class is to teach about starting nonprofits, She sounded darn near as excited as me about this prospect! So, I may go into St. Paul next week to meet with her students and herself to get started on this.


For starters, I described that I wondered if the microboard could "own" the house and Daisy rent from it.

She had questions, though, about Daisy sitting on the board because legally board members of nonprofits are not supposed to profit from the work of the organization.

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