“Getting ahead is not a possibility when you have to work two jobs just to be destitute.”
That statement should haunt every legislator in the state of Delaware. It haunts us as parents of children with intellectual disabilities because it was said by a direct-support professional — the type of worker who is critical to our children and their ability to live independently as a part of their community.
It should haunt our fellow state legislators and the governor because they voted unanimously in 2018 to pass and sign a law called the McNesby Act, which committed the state to fully fund services for people with intellectual/developmental disabilities (I/DD), so direct-support professionals can be paid a livable wage. Despite passage of the act in 2018, there was no additional funding included in the fiscal year 2021 budget, and none was even proposed for the last two years. This is in the midst of a pandemic that has ravaged the entire disability service provider system that these Delawareans depend on.
Because of chronic underfunding, there is a crisis in the direct-support professional workforce, and the quality of life for thousands of Delawareans with disabilities now and in the future is at stake. Direct-support professionals provide a multitude of supports for the individuals they serve every day, from helping with bathing, dressing, eating, etc., to making it possible for them to hold a job in the community.
Currently, state funding of residential and day services for adults with intellectual disabilities supports a wage of only $9.62/hour for direct-support professionals, barely above today’s minimum wage. The state reimburses nonprofit service providers to deliver disability services, but the expenses are not matched dollar for dollar. The state pays about 30% under the cost to provide the care. Agencies must either fundraise and/or pull from other resources to pay a higher wage and provide benefits for this essential workforce. Jobs at retail outlets can be much less demanding and offer a higher pay than what direct-support professionals can earn. These professionals are skilled health care workers and deserve to be treated and paid as such. They are caring, dedicated people who love their work, but they have to face the economic realities of caring for their own families and putting food on their tables.
Parents of adult children with I/DD literally put the lives of those children into the hands of their support staff every day. We also live with the fact that long after we are gone, our children will need reliable, caring and well-trained direct-support professionals to live their best lives. Whether those supports will be there and what those lives will look like haunts us more than anything else.
The pandemic has threatened the survival of many service providers in Delaware and led to drastic measures to cut costs, including the layoff of many direct-support staff. Now, providers are also facing the likelihood of a rising minimum-wage requirement. However, the organizations that provide these services can’t simply pass along higher costs to make ends meet. State funding is based on reimbursement rates, and without a corresponding increase in the contracted rates for the services, the alternative is to serve fewer people.
Adding to the urgency to add funding this year is an unprecedented match by the federal government. Every dollar in state funds that is spent on home- and community-based services, such as Delaware’s service for adults with I/DD, will be matched by $1.77 in federal funds, at least through September 2022. Delaware should not leave these federal dollars on the table. The time is now to take advantage of this high federal match and address this workforce crisis before it deteriorates even further.
Many legislators have joined our fight to keep the McNesby Act’s promise to fully fund these services. We need Gov. John Carney and the entire legislature to recognize the full cost of providing quality care to people with I/DD as decisions are made on the state budget. We invite the public to join us in advocating for this important issue by going to mcnesbyact.com to learn more and sign the petition.
The stakes have never been higher. If the nonprofit service provider system that has served Delaware well for more than 70 years unravels, who will care for people like our children and the thousands like them now and in the future?
Rep. Krista Griffith is a Democrat who represents Fairfax. Rep. Kevin Hensley is a Republican who represents Townsend.
