Freezing the Future

What are your long-term plans for Joy? asked her grandfather.

We were up at the family cabins for the long Memorial Day weekend, and we'd been very happy with how things went for Joy, compared to the struggles we've sometimes had in previous years. But she turned seven while we were there, and one can't deny that she needs an awful lot of assistance for a seven-year-old -- diaper changes, constant close surveillance lest she dart away or eat something dangerous, lots of interpretation given that she speaks few words (and not many of them clearly).

So, what will we do when she grows up, assuming that serious issues still persist?

Short answer: We don't know.

Longer answer: The "not knowing" got a whole lot scarier this past week, here in Wisconsin.

You see, while you have a certain "not knowing" with any child -- What will I be? Que sera, sera! -- of course the "not knowing" is automatically more intense with developmental disabilities. Joy is fortunate to have access to a lot of services right now, between her guaranteed public education through the age of 21, and the autism insurance that pays for therapies. We also get respite care and other services via a Medicaid waiver for children's long-term care services that helps families like ours keep their children at home rather than the institutionalization that was the norm not so many decades ago. (Many children are on a waiting list for that waiver program -- we are SO fortunate in that regard.)

But both the schooling and the waiver run out when Joy reaches adulthood, and the program that would offer the next step, long-term community-based care into adulthood has been FROZEN by Wisconsin's budget committee.

Wisconsin has been making great strides in the past years when it comes to community-living services for frail elders and people with disbilities, primarily through a program called Family Care. The top goal of Family Care, according to the Wisconsin Department of Health Services, is

Giving people better choices about where they live and what kinds of services and supports they get to meet their needs.

The Family Care program provides Aging and Disability Resource Centers to help people figure out what assistance is available, and then (for those who qualify),

the new Family Care benefit, which combines funding and services from a variety of existing programs into one flexible long-term care benefit, tailored to each individual’s needs, circumstances and preferences.

Depending on the person's need, services might include things like: adult day care, home modifications, home delivered meals, supportive home care, health care services, daily living skills training, day treatment, pre-vocational services, supported employment and more.

But in the slash-and-burn budget that is coming down the pike, the expansion of Family Care is slated to halt. As of June 30, new Family Care enrollments will stop, and people will go on waiting lists instead. This freeze will last the entire biennium, during which time waiting lists are expected to DOUBLE.

The majority-party nay-sayers on the budget committee (the Joint Finance Committee, for those folks keeping score) figure that families will figure out ways to pick up the slack for the most part -- caregiver quit her job & stay home, anyone? -- but meanwhile they've set aside some funding to put people in nursing homes in case of emergency. Talk about going backwards!

For a family like ours, the "not-knowing" is looking across a span of years yet, with frightening consequences if the trend continues. For Wisconsin families and youths currently planning their transitions out of high-school and into the adult world in the next couple of years? This is a calamity, right here and now.

A new grassroots effort called Wisconsin Families Forward is looking to avert the calamity as the budget containing the long-term care freeze moves on to the full legislature.

First, Wisconsin Families Forward is conducting a survey of families (Urgent deadline, June 3!!) to discover how it would affect people to not have the services there when their young-adults needed them:
http://www.surveymonkey.com/s/wilongtermcarecap

The Wisconsin Families Forward group also has a Facebook page!

The group is encouraging people to contact their legislators -- the budget goes to the full legislature next, so there's one last chance to lift the caps.

There will also be press events around the state; the one in Madison is Thursday, June 9, 10am at the Capitol.

We've got to keep telling the stories!

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Those of you who have been long-time readers of this blog know that after Memorial Day weekend, I have great fun with the post-getaway wrap-up blogging. I promise, there will be such a post -- perhaps not such a cliffhanger as last year, but with some special excitement nonetheless!