Crisis in services needed by adults with intellectual disabilities

State and national policies have supported the right of adults with intellectual and developmental disabilities like autism to live and work in the community, with appropriate services, for more than 20 years.  It’s a win/win for everyone, including taxpayers, because these services would cost three times as much if they were provided directly by the state in institutions like the Stockley Center.

So why does the state of Delaware continue to underfund services for adults with I/DD who are living and working in the community?  After years of neglect and underfunding, there is a direct support professional workforce crisis. The DSPs that we need in Delaware are disappearing at an alarming rate, because Delaware doesn’t consider adults with I/DD a priority. Until the age of 22, students with I/DD are well funded under federal law. 

At age 22, the state wants to forget they exist. Agencies must fundraise and pull resources from other needed functions to supplement DSP wages. It’s not enough, and trained DSPs, who love their work, are leaving to find better-paying jobs to support their families.

In 2018, the Michael McNesby Full Funding for Adults with I/DD Act was passed unanimously by both houses of the General Assembly to ensure that funding for services is brought up to levels recommended by the Department of Health and Social Services.  The McNesby Act called for full funding to match upgraded 2018 utilization data, which according to the state’s own 2018 DHSS study requires an additional $42 million.

Yet, Gov. John Carney’s proposed budget allocated just $1.9 million to help increase DSP wages. Advocates have requested 1/3 of the amount required ($14 million) this year, with the remainder to be funded over the next two years. 

Direct support professionals, once employees of the state with state benefits and pensions, are now the employees of various nonprofit agencies, such as Easterseals, Autism Delaware and KSI, that provide the support needed by my daughter, Rose, and other adults with I/DD. Rose lives in an apartment in the community and works part-time. She has DSP support at work, but not at home. My husband and I help Rose at home and are the de facto DSPs. She has a roommate, who provides some paid support when she is not working at a full-time job. This is her fourth roommate in two years. 

We cannot do this forever. Rose will need trained DSP support at home eventually.

Unfortunately, since leaving state employment at institutions like the Stockley Center, DSPs have not been paid a living wage. The state reimburses the nonprofit agencies that provide DSP services in the community at a rate of $9/hour. One agency lost 95 percent of their DSPs last year due to low wages; another had a turnover rate of 87 percent, and the turnover rate for most agencies is about 50 percent a year. Even the most effective business leader could not operate in an environment with turnover of employees at such high levels. 

Employing people with I/DD was an initiative of former Gov. Jack Markell during his term as chair of the National Governors Association. He promoted public-private partnerships to increase employment of individuals with I/DD and to help businesses achieve a “better bottom line.” Advocates and self-advocates embraced this initiative. Some adults with I/DD may be able to work in the community without supports, but most, like Rose, need DSP supports to be successful.

With the U.S. economy now at full employment, employers are increasing pay to attract and retain scarce workers. Christiana Care now pays a starting wage of $15/hour; Bank of America is paying $17/hour; retailers are moving toward these higher wages and more employers will join them as qualified workers become harder to attract.  Even Wendy’s and McDonald’s are paying more than trained DSPs receive.
The Joint Finance Committee, chaired by Rep. Quinn Johnson, decided on Wednesday, May 29, 2019 to fund some programs at $15 million more than the governor requested and to fund the McNesby Act at $10 million less than the minimum amount needed this year. 

Last year, the JFC added $4.67 million to increase the funding for DSP wages, but promised to do better in future years; this year the JFC added just $4 million, which includes the governor’s $1.9 million request.  This year, the state has the money to make this happen, with a $400 million surplus.

Perhaps some of that surplus should be retained for a “rainy day fund,” but for the system that serves adults with I/DD, the rainy day is now.
Since every single senator and representative voted for the Michael McNesby Full Funding for Adults with I/DD Act in 2018, ask your senator and representative to fully fund the McNesby Act with the needed $14 million. Remember, they promised!

For more information from family members affected by the DSP workforce crisis that the McNesby Act was passed to address, please see:   
https://www.delawareonline.com/story/opinion/contributors/2018/05/02/give-adults-intellectual-and-developmental-disabilities-support-they-deserve/574141002/.

Cynthia Gratz Campbell is a mother of two and a longtime advocate for the working poor, the elderly and the disabled. She and her husband and their daughter, Rose, live in Lewes.