One of the critical areas for saving state funds over the next two years is finding the right housemates for people receiving 24-hour supports who could lower their Medicaid waiver budget by sharing living expenses and staff supports.
The Arc’s position with the state, providers and families is that we must look every way we can to find ways to save money. A reasonable, rational and respectful move toward housemates will, over time, help save over $25 million a year.
Since we put this out in the latest issue of Arc News in Indiana I have had several really interesting and enlightening conversations on this issue. Several parents and self-advocates have commented to me directly how much they welcome this, but that that they need to find the right housemate.
While the pressures to find housemates are real, we all have to be careful in the approach and be aware that every situation is different.
Yesterday I spoke to the Self-Advocates of Indiana Board of Directors about this issue. A self-advocate shared a powerful story with me about how she and her roommate came home from work on a Friday only to find two new people in their apartment. No one told them they were coming; no one introduced them or prepared the other two women for the move. Needless to say no one was happy, including the staff. The young woman telling the story shared that the end result was that at the end of the weekend the staff wrote a BEHAVIOR PLAN for her because of her “bad attitude”! Simple common sense tells us that we certainly can do much better.
The conversations I have had about housemates have offered a great opportunity to talk about our roommates’ bill of rights. While The Arc supports finding ways to share costs, it must be done in a reasonable way. Please take a few minutes to read the Roommates Bill of Rights and think about how you would like to be treated in a similar situation.
Recent conversations have brought up other thoughts on how funds can best be utilitized. I talked with a provider seeking advice on how to handle a difficult issue. A family wanted their loved one to live in an apartment on one side of town close to them, but also wanted a day program nearly an hour away from the apartment. Only one of the three people in the apartment would be going to that program. Staff would need to drive one person an hour there and an hour back, and then, four hours later, make another two hour round trip. This would require four hours of staff support for one person just for transportation.
In this situation, what is the answer to supporting family and consumer choice within limits of staff resources and funding? Is there another pathway to get to the right goals?
I am reminded of a story from years ago. Staff found a wonderful job for a young man named Peter, but Peter had real problems getting on the right bus each day to get home from work. Having a staff person there every day when he got off work was too expensive - particularly as it seemed this would have to be a permanent solution. However, a wise person suggested that the job coach spend a week with Peter at the bus stop to see who else got on that bus each day and who the bus drivers were. Since Peter had difficulty talking they introduced him to several people who got on the same bus and asked them to look out for him. They introduced Peter to every bus driver and gave Peter a laminated card that in big type asked, “Is this Bus 105?” Within a week, Peter had a group of people helping him make sure he got on the right bus. Instead of the state spending over $40 a day to make sure he got on a bus, Peter developed friends willing to look out for him - the cost of that? - Priceless.
At the end of my presentation on housemates to the Self-Advocates of Indiana Board of Directors, I could tell that one of the board members was feeling very emotional. He came up to me afterwards and told me how much he worried about his elderly parents who are in their 80’s. He said he carries the cell phone number for Steve Hinkle, President of Easter Seals Arc, in his wallet just in case something happens. “Steve gave it to me, and I know if something happens he will be there for me.”
We can never forget that thousands of people are counting on people like Steve, you and me to make sure that call is answered. Getting through these difficult times will require new thoughts, new responsibilities. I am confident that together we will find that new path.
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