I’ve written before about the importance of building circles of support. All of us struggle to find the best way to ensure a rich life for our family members throughout their lifespan, and to provide the smoothest transition for them once our own lifespan is over. D.C.’s Supporting Families Community of Practice (https://dds.dc.gov/page/dc-supporting-families-community-practice) has hosted quite a few discussions and training sessions on this theme, and helped many people and their families think through the best way forward for their particular circumstances. Some of us are more fortunate in this regard, with immediate family or local relatives ready to help out along the way, and perhaps to step in once we’re gone. Some have friends or church communities that can pitch in as well.
Some also turn to intentional communities, like those created throughout the country by various groups of people who have common interests and want to socialize and share day-to-day responsibilities in a close living situation. Over the years I’ve seen a number of efforts by families in Maryland to launch such communities on behalf of their adult children with disabilities, and a few have made headway. Sooner or later though - particularly if they’re hoping for Medicaid funds to support some of those involved - they’ve had to make sure they aren’t working just to create communities of people with disabilities, but rather to facilitate their integration into the community as a whole.
This isn’t as straightforward as it sounds,though. Just making sure people are living scattered among apartment buildings across the city is not enough to ensure community integration, as many with and without disabilities know very well. This can still be a lonely and isolating way of life, especially since our society as a whole is still so far from enabling full participation by people with disabilities – in employment, social activities, and truly fulfilling opportunities to contribute to their communities. So it’s easy to see why creating intentional communities has some attraction, and the concept shouldn’t be dismissed out of hand. The crucial thing is not to be driven by parental fears or misgivings, but rather by what the person involved wants. That way, I think it’s harder to go wrong.
A new group in town is grappling with how to forge intentional communities, both in D.C. and over the line in Montgomery County. It’s not for everyone, and the families involved in its launch have brought personal resources to the table in order to get the process going. Modeled on community-building efforts by parent groups based in Illinois, Integrated Living Opportunities, or ILO (https://www.ilonow.org), is forming clusters of families who provide mutual support to one another while helping facilitate social opportunities for their family members. In some cases this may also involve people’s choosing to live in the same building or near one another and benefiting from some shared services, as has already happened with one of the Maryland groups. ILO is also looking at ways to make sure solid supports will be in place for people when their parents or other family members are no longer around. Some people involved in ILO have qualified for services under D.C.’s Medicaid waiver while others haven’t, but the organization is working with local providers and other agencies to make sure community integration stays in the forefront of their planning for everyone.
Even though ILO is in its early days yet, it’s positive to see that D.C.’s disability community is maturing and expanding in some new directions as we move beyond Evans and find new ways to work together on issues that concern us all.