The bad news is that our state is facing a crisis: Delaware citizens with intellectual and developmental disabilities (I/DD) are not getting the care that they need.
The good news is that we have the money and the mechanism to solve this crisis.
In 2019 Delaware’s General Assembly passed, and Governor Carney signed into law, the Michael McNesby Act. The idea behind the McNesby Act is simple and it is profound: As a state, we should provide funding to ensure that the most vulnerable among us, those living with IDD, can lead lives of dignity.
The most meaningful way we can help people with disabilities to live their best lives is to significantly increase the funding for direct support professionals (DSPs), who are essential to full and inclusive lives for people with disabilities. They work inside the home on the most basic needs of daily life that are impossible for many to do by themselves: getting dressed, eating food, and using the bathroom. Equally important, they work outside the home to facilitate community participation, serve as job coaches to enable people with I/DD to work meaningful jobs, and foster inclusive lives for those in their care.
By not allocating all the funding authorized by the McNesby Act, we have failed to build upon the promising first step of its passage. Because of this failure, service providers, including Autism Delaware and others, cannot afford to pay DSPs a living wage. The low wages and demanding work has driven many DSPs away from a profession that they love and the people who need them. DSP vacancies are at an all-time high and the lack of care is having a devastating impact on Delawareans with disabilities and their families.
We have seen and felt this impact personally. Our 32-year-old daughter Lorraine needs help in every aspect of daily life. She requires care from the moment she wakes up in the morning until she goes to bed at night. She cannot talk, use sign language, or read. Her care is further complicated by type-1 diabetes. Lorraine needs skilled DSPs to help her get through the day and she needs them every day.
Like many people with autism, Lorraine needs a predictable routine and consistent caregivers. When those two things are in place, she does well. DSPs enable Lorraine to live the best life she can. Without a predictable routine and consistent care, Lorraine’s struggles are exacerbated. As she goes, we go.
The pandemic has magnified the immense challenges faced by people like Lorraine and families like ours. She lost a volunteer job that she held for 17 years. Several beloved DSPs quit. The loss of those DSPs has had a huge negative impact on Lorraine and her wellbeing.
The time is long past due to invest in the caregiving workforce — paying them a professional, family-sustaining wage for their physically and emotionally demanding work. This is the best way to ensure that people with I/DD get the services they so desperately need. DSPs not only care for those with I/DD, they allow for their family members to work, to care for other children, and to live a full life.
It bears repeating that we are at a crisis point and we have a choice to make. One choice is the status quo: continue to pay DSPs a non-living wage while allowing the standard of care for those with IDD to slip. The other is to fully fund the McNesby Act, to pay caregivers a living wage, and ensure that the most vulnerable among us get the care they deserve. If we choose to fund the McNesby Act by making a $16.5 million investment, Delaware is guaranteed $21 million in matching federal funds, according to figures presented by the Division of Developmental Disabilities Services during the public hearing on the state budget. If we choose not to, the crisis will only get worse and the federal matching funds disappear.
Our state has the money to fully fund this program. Our budget surplus makes that clear. What is not yet clear is whether we have the moral conviction and political will to ensure that our most vulnerable citizens receive the care that they need. We believe that the General Assembly will show that conviction and they will fully fund the McNesby Act. For people like Lorraine, for families like ours, and for the DSPs who help us make it through the day, it is imperative that they do.
Liz and Brendan O’Neill live in Wilmington. Their 32-year-old daughter Lorraine is on the autism spectrum and receives services from Autism Delaware. Brendan is president of the Board of Directors of Autism Delaware.
