The Case for Inclusion, a report recently published by two nonprofit institutions, ANCOR Foundation and United Cerebral Palsy (UCP), gives a meticulously researched overview of what life is like for people with intellectual and developmental disabilities (I/DD). The report assesses states on how well they include, support and empower individuals with I/DD. The conclusion? Despite progress, overall support for this community has stalled, according to the report—and honestly, even the word stalled sounds a little too kind.
There are years-long waiting lists for residential services and a low number of individuals with I/DD working at a market-driven wage. Families are picking up the duties that a professional would if they were covered by Medicaid. The good news: Decades after states embarked on efforts to close large institutions that essentially warehoused the I/DD population, 34% of people with intellectual disabilities are employed. Every dollar spent on supporting individuals in finding work, friends, and self-esteem promises a huge return on investment.
For people of all abilities in this community, success is often determined by one highly influential, skilled person who helps them navigate both the work world and home life. They are called DSPs. Not familiar with the acronym? You’re not alone. Read on to learn more.
One word of warning—there are a lot of acronyms in this post. Plow through anyway. This is important information.
What Exactly Is A Direct Support Professional?
The Case for Inclusion devotes more than a few pages to what is known as the direct care workforce or DSPs—Direct Support Professionals. They are often called the linchpin or the backbone of the care/support system. DSPs specialize in supporting individuals with I/DD so that they can live in the community with their family and peers instead of in state institutions, per the report. DSPs are also the relationship builders who connect individuals to jobs, volunteer opportunities, friends, religious groups and civic life.
Essentially, every aspect of an I/DD individual’s life could very well change for the better if DSP wages improved. Still, many legislators lack an understanding of the crucial role of DSPs in the caregiving system, which can result in limited funding for them, which comes primarily from Medicaid.
The Jaw-Dropping Statistics About These Workers
For the general public, who wouldn’t know an HSA or PCA from a DSP if their life depended on it (and someday it might), this is your wake-up call. If you own a business, it’s time to consider hiring people with disabilities. If you offer a training program, it’s time to include all abilities in skill-building programs. And if you do either of those things, it’s likely you’ll meet a DSP in the process. Understanding their role is one step in learning to make your community more inclusive.
“A large number of Americans are really starting to understand the value of investing in quality Medicaid support,” says Barbara Merrill, CEO of ANCOR Foundation. This is the first year the nonprofit has partnered with USP to create the annual Case for Inclusion. And not by coincidence, this year also marks the first time this key benchmarking tool includes a workplace section titled A Workforce in Crisis.
Crisis? Yes, crisis. To put the problem in perspective, the report shows that retail salespeople and stock clerks are likely paid several dollars more than DSPs. Along with low wages, the job can be stressful and inconsistent, which is why…
- 88% of respondents leave their jobs because of inadequate pay.
- the average turnover rate is 46%
- only 21% stay a full 6 to 12 months on the job
Why Their Role Is So Crucial
High turnover is highly disruptive to people with I/DD. Most people can imagine how this affects a family, their health and well-being, whether that person needs assistance with basic tasks, such as hygiene and medication, or they require job coaching or help to prepare for an interview. A DSP does all of that and more. Losing the backbone of support, even with a highly supportive family and community, can bring everyday life to a standstill.
For healthcare service providers and families who count on home care and support, this is not a new story. It’s common sense that individuals with I/DD, including the young and the aging, want and deserve the same opportunities and quality of life as all Americans. It is a call to arms for every state to push forward and ask for increased support, primarily via Medicaid.
Filling the Pipeline for the Future
And the situation will get more dramatic. Demographic trends, says Merrill, show we are only beginning to understand the breadth of the problem. “An increasing demand due to a rise in autism diagnosis, increased longevity of people with I/DD and more demand from baby boomers will require that states find innovative ways to recruit and retain these specialized caregivers,” she says.
You Can’t Improve What You Can’t Measure
It’s time to disrupt this cycle, say experts at ANCOR. “We’ve been working with the National Alliance for Direct Support Professionals to Advocate for the establishment of a standard occupational code by the U.S. Bureau of Labor Statistics,” said Sean Luechtefeld, communications director at ANCOR. Solving the DSP crisis will require us to have that data, which we currently lack access to. Absent that data the best chances of increasing DSP wages and making inroads is to seek Medicaid reimbursement rate increases, which is very tough. Essentially, the workforce most Americans don’t know about? It doesn’t even have a standard occupational code by which to track wages and other vital statistics. As of now, all the public can only count on is data that does seem to indicate that the number of people with a specialty in caring for people with I/DD is taking a nosedive while at the same time the demand for their services is rising.
Without the professional staff needed to provide the supports and services that enable people with I/DD to be integrated into the community, provider agencies have little hope of maintaining and expanding on the progress they’ve seen in the last decade, says Merrill.
Other organizations, for example, those who use direct care for the elderly also say that because their demographic is rising, the issue is getting more attention. Will it make Direct Support Professionals who care for people with I/DD a household name? Only if we continue to lock arms and work together for support.