Delaware is Failing Adults with Disabilities — Like My daughter

Verna Hensley is the mother of Julia Hensley and the vice president of public affairs at Easterseals Delaware and Maryland's Eastern Shore.

Most parents of children in their twenties are contemplating "empty nest" syndrome, but it's a different syndrome that haunts me each day. Trisomy 9 Syndrome, a rare chromosome abnormality, entered my world almost 23 years ago when my daughter, Julia, was born. 

Julia defies the diagnosis of Trisomy 9, which we were told is “incompatible with life.” Fortunately, the “experts” were wrong and Julia has far exceeded everyone’s expectations. 

Anyone who knows Julia knows she is her own best advocate. She learned at an early age to speak up for her rights to be included alongside her typical classmates in school. What I didn't realize was that the biggest battle would be helping her understand and fight for the support she would need in her adult life.

When you have an adult child with a disability, transitioning from the classroom into the adult world means leaving an extremely supportive environment in school to an adult system of support that some have likened to ‘falling off of a cliff.”   

While her father and I hope she ultimately will achieve full employment and live independently from us, the reality is that our daughter likely will always need some level of direct care support throughout her lifetime. What happens when we are no longer around to provide it? It worries us.

I also have the advantage of knowing the inner workings of how the state of Delaware cares for adults with intellectual and developmental disabilities: I work for Easterseals Delaware & Maryland’s Eastern Shore, an organization that provides services to people with disabilities. I see the outstanding work our direct support professionals do.

I am also aware of the extremely challenging work performed by those who staff group homes for those with significant disabilities. I see the worry in the eyes of parents as they contemplate what the future holds for their adult children. I’m in meetings where the topic of conversation is frequently the extremely low levels of funding received from the state and how to cope with it.

The truth is that the State of Delaware is failing adults with intellectual and developmental disabilities and their families. A system carefully designed over many years to support this population as a part of their community and outside of institutional settings, is in jeopardy because of chronic under-funding.

Funding has remained stuck at levels seen in in the early 2000’s, while the cost of nearly everything needed to provide services — particularly healthcare benefits for our staff and transportation — has risen dramatically. Healthcare costs have more than doubled over this period and the only recourse for the providers has been to make other cuts to make ends meet.

When any wage increases are given, it has necessitated hiring fewer staff and conserving program costs elsewhere, like eliminating supervisory nursing positions to be able to retain direct line staff. Studies show an estimated $20 million gap in funding for developmental disabilities providers in state dollars as of 2015 – the most recent estimate of the shortage.

When service providers are underfunded, the level of care cannot be what it needs to be. Salaries are suppressed, making already demanding jobs less appealing. That leads to staff turnover, which further reduces the level of consistent, quality care.

In the life of a person with a disability, losing a trusted care worker can be devastating. At a recent Joint Finance Committee hearing, a father tearfully testified how he had to explain to his son with autism that the reason his direct care person had left was because she needed to get a better-paying job. It was not, as his son feared, because of something his son had done.

Today, the network of service providers for Delawareans with intellectual disabilities is struggling, and the thousands of families who depend on them are worried.

How do we address this ticking time bomb? First, there needs to be a commitment by the Governor and the legislature that the rates that fund the system will be regularly evaluated and adjusted, just as was promised 14 years ago. Rep. Melanie George Smith has introduced bipartisan legislation (HB 104) to do exactly this.

Secondly, the nonprofit provider system needs an increase of $9 million in state dollars for next year so participants being served in both day programs and residential group homes will benefit. Providers and families will soon begin “The Whole 9” campaign to urge our elected officials to prioritize disability funding this year.

As a mom and an advocate, I hope that the support system for adults with intellectual disabilities is not overlooked again this year. Thousands of Delaware families are depending on it.