Capitol Correspondence - 11.19.19

Politico Flags Systemic Challenges Facing People with I/DD and Aging Caregivers

Share this page

As reported by Politico:

“The first generation of developmentally disabled adults who grew up at home, not in an institution, are now middle-aged and facing a health care system that’s largely unprepared to take care of them as their baby boomer parents age out of that role.

Numbering in the tens of thousands, they were the test case for deinstitutionalization. Now they are test cases for an ill-defined, underfinanced future. Most have never spent much time away from their parents and are on long waitlists for state services, which may be out of reach until an emergency strikes.

State lawmakers are aware of the problem; some have spent money to try and address it. But with whispers of a possible recession on the horizon, and with more boomers entering their 70s every day, many families and advocates fear what will befall this already fragile population.


The vast majority of people living with an intellectual or developmental disability rely on Medicaid, but the public insurance program typically only covers medical needs. Services such as help with daily tasks or job training are typically funded through a Medicaid program, known as Home and Community-Based Services waivers, that helps states keep people at home. However, states can cap enrollment, meaning some families end up on waiting lists for years and may only receive services when a caregiver dies or becomes incapacitated.

It’s a system that leaves older parents wondering whether they will be able to transition their child to a safe, appropriate environment. More than half of caregivers said they don’t have a plan for the future, and poor people were less likely to be prepared, according to a 2016 survey from the University of Minnesota and disability advocacy group The Arc.

The state often becomes the caregiver of last resort. But that might mean placing a loved one in a home hundreds of miles from their family.”

We encourage readers to go to the full article, linked above, to read solutions and challenges states face as they seek to address this issue. The article includes examples from Tennessee, Ohio and Florida.