Letting Go

Letting Go

A constant concern for parents of children with disabilities is who will care for their child when they are no longer physically able to or have died.   There are multiple options and a relatively new one in development.

It used to be that the care of an adult with disabilities passed to either a sibling or another close family member.  For a very long time another option was a state institution.   Several decades ago those institutions closed giving way to the development of group homes.

Sometimes parents do not want to give the responsibility of care to their child's sibling.   Sometimes the sibling will not accept that responsibility or other circumstances make taking on the care of a sibling with disabilities unfeasible.  Parents may be able to provide funding for such care through trust funds or other financial arrangements but the fiscal provision is often the least of the solution.

After the close of state institutions, group homes became the default approach to addressing long-term care for adults with disabilities.  They had much to recommend them.   They were located in neighborhoods in stand-alone homes or in apartments.  Caregivers either lived in or arrived according to a shift schedule.    Sometimes the residents left during the day to go to work or to pre-arranged daytime activities.   It was a living situation as close to typical as possible. Larger organizations organize regular social gatherings so that clients can have a broader social life.  The homes are usually managed by a non-profit organization that receives funding from a state agency at a fixed rate for each bed it provides.  Agencies are limited in the number of “beds” provided by the funding from the state agency.  There is never enough money for all of the people needing residence.   Consequently families try to get on a waiting list early.  Group homes give families the comfort of knowing that a non-profit will care for their loved ones and that family members can visit and monitor.

Now there is another model for long-term residence and care for adults with disabilities.  These are communities of homes that are in some ways patterned after communities for adult seniors without disabilities.   These communities are made up of apartments and/or homes.  The communities are being developed by real estate entrepreneurs often in conjunction with a founding family.   Some of the communities like the one planned for Rockville, MD will be a mixed occupancy community with approximately 25% of the units reserved for people with disabilities.  Other communities are made up of purchased stand-alone houses and condo apartments.  It is not unusual for the communities to have the same type of amenities often found in senior communities, a club house, pool, or café.  Medicaid funding can pay for an aide to come into the housing for several hours each day or longer as needed.  

The good news about these communities is that they are a community and not an isolated group home within a typical residential area.  So residents can visit with each other easily and form social connections.  The bad news is the development is slow and expensive.

One way or another families of children with disabilities will at some point be families of adults with disabilities. The options are modest and a plan needs to be in place for the time when families will need to let go.