Scotland Report #2 From Lynn Breedlove
Scotland Report #2: Challenges to Self-Direction Around the World
-Lynn Breedlove
In August, I represented In Control Wisconsin at an international Disability Congress in Scotland, and presented a paper there: www.incontrolwisconsin.org/selfdirectionworldwide. I attended several workshops on self-direction and participated in a brainstorming session with self-direction advocates from several countries. I learned a lot, including the dangers and difficulties facing self-direction in other countries (which have similarities to the challenges we face here). I believe that Wisconsin can learn from the strategies being used elsewhere to overcome these challenges, which I hope to learn more about in the coming year. Here are some of the challenges I heard about, and some thoughts about how they connect to Wisconsin policies and practices:
|
Self-Direction Challenges in Other Countries |
Connection to Wisconsin Policy or Practice |
|
FUNDING. Self-direction has been popular in England for several years, but two years ago the government cut funding for “personal budgets” by 40%. Today, many people aren’t receiving the level of support they need, which has led to some disillusionment about self-direction. |
Self-direction advocates in Wisconsin have worried this could happen here, but so far disability and aging advocates have successfully defended Medicaid long-term care programs (including IRIS and Family Care) from significant funding reductions. |
|
RED TAPE. Some individuals and families say they are worn down by all the paperwork, procedures, rules, etc. associated with self-direction. |
Some IRIS participants and families using the IRIS Waiver have made similar comments in recent years. |
|
FREE MARKET. In some countries, there are unrealistic expectations of the “free market” (i.e. an assumption that whatever people need will automatically be available in the marketplace of services). That’s not always true. |
Just having funding in your individual self-direction budget for something doesn’t guarantee you’ll get it. Some supports and services aren’t available in some parts of Wisconsin, e.g. some people who want a community job can’t find a local provider agency or independent job developer/coach to help them achieve that. |
|
CONFUSION. In many countries, it’s not exactly clear what self-direction means and who can do it. Is it something people have to do on their own, or with the help of family/friends? Is it only for people who have already demonstrated self-reliance? Or for anyone who chooses it? |
We have some consensus between government and advocates about these things in Wisconsin. State law says anyone who is eligible for Medicaid long-term care can choose to self-direct their supports and services, but there continue to be examples of confusion in our system, e.g. when people are told, “You wouldn’t be a good candidate for self-direction”. |
