Most young adults look forward to moving out of the family home. Into a place they can call their own or share with friends.
Realizing this dream can be a real challenge for anyone who needs daily support or home modifications.
But more and more families are piecing together funding, legal and logistical solutions that make independent living a reality for their kids.
It ain’t easy.
But the pay-off is truly worth the effort. And we can be grateful to pioneering families who have graciously prepared how-to resources to guide us along the way.
Traditional model
For decades, adults with disabilities have lived in group homes or supported apartments. Typically a provider agency employs support staff, and owns or rents the premises.
With this arrangement, the agency manages financial, legal and logistical details and provides specific services to assure the person’s housing, food and medical needs are met.
But, this model has some real limitations.
First, you can wait many years for a “slot to open up”. Second, the agency calls the shots. If a “placement” becomes available, your choice is to take it (as it is) or not. There’s no real choice about who you’ll live with, where you’ll live, or the routines and rules of the house.
There is an alternative.
Keep the housing and support services separate
Families are finding ways to rent or purchase a residence. And then hire support staff separately. This arrangement offers much more personal choice and control.
It also involves a lot more work.
These families must learn how to piece together funding sources. And become familiar with a wide range of topics such as Medicaid waivers and disability benefits, types of shared home ownership and/or rental agreements, special needs trusts, and more.
At first blush, it all seems daunting. Yet many families are finding they can learn and do what’s required. But not alone.
The key is growing a circle of support. A group of people who are committed to supporting your son or daughter to attain his or her personal goals.
When this circle of support is formalized as a microboard, it becomes a legal entity that can enter into contracts on your son or daughter’s behalf.
What’s a microboard?
David and Faye Wetherow, designers of the first microboard (in the 1980s) and internationally recognized authorities on the subject, say there are three essential requirements for a microboard:
- An unencumbered focus on the identity, needs and express wishes of the person being supported.
- Development and maintenance of an active, diverse and fully engaged citizen-based circle of support (Board of Directors).
- Retaining all possible elements of control, especially including the role of employer-of-record.
We’ll focus on microboards in future posts. Till then, click here to learn more from the Wetherows.
Video presentation and how-to manual
A detailed presentation about various models of self-determined housing was featured at the July 2011 PA Statewide Transition Conference. A video of the presentation is linked below.
Some of the funding sources and organizations mentioned are specific to Pennsylvania. But you’ll get a good sense of the “funding puzzle” approach, and you’ll find similar organizations in every state.
You can download a full transcript of the presentation, which is helpful since there’s so much content.
And, “Handout 1″ is a how-to guide by Susan Tachau, a parent member of a microboard supporting three young men with disabilities who own a home together. This manual is an incredible resource!
Click here to watch a video of the full presentation by Susan Tachau and attorney David Gates. And to download all handouts.
Next Steps
Feeling hopeful? But overwhelmed? Wondering where to start?
Here are some next steps to consider.
- Download and read Handout 1 (Susan Tachau’s “how-to guide”).
- Invite other families (as she did) to learn together with you.
- Contact your local ARC or Center for Independent Living to learn more about microboards and funding sources for which your child may be eligible.
- Contact the microboard association in your state. The PA microboard association can be found here.
- Intentionally think about ways to help your child build informal circles of support.
Your turn
The video includes a lot of complex information. New lingo, laws and agencies.
What are your thoughts as you consider the idea of a journey similar to Susan Tachau’s? Have you met other parents who have formed a microboard? We’d love to hear your thoughts.
If you found this post helpful, please share it with others. And like it on Facebook. Thanks!
Image by Joe Shlabotnik at Flickr
