Amy Hewitt, Director, Institute on Community Integration, University of Minnesota
One of the best ways to promote community living for people with intellectual and developmental disabilities is to ensure we have a sufficient, stable, competent, and ethical direct support workforce. I have devoted much of my career to this issue.
DSPs support people with disabilities in having a life, in being valued members of their communities – choosing where and with whom to live; having jobs that pay real wages; developing lifelong, loving relationships with friends, family and intimate partners; having memberships in community organizations and being responsible citizens, to name but a few aspects of leading a valued life. DSPs also ensure health, safety, and wellness. The work of direct support, done well, requires significant knowledge, skills, and deeply held values.
Those of us working in human services know the value of great DSPs and the difference they make in the lives of people with disabilities every day. More people than ever require the support of qualified DSPs, a workforce that will comprise the second largest occupational grouping in the country by 2022, barely outpaced by retail sales. And yet our service system is failing catastrophically. More than half of DSPs leave their jobs within the first six months. Real wages for this profession, when adjusted for inflation, are lower today than ten years ago .Approximately 54% of DSPs’ families qualify for public benefits due to low income.
Simply to sustain services as they are, given the current rate of turnover, every year an estimated 574,200 new DSPs need to take new jobs in the workforce. And an additional 167,001 DSPs are needed to meet the needs of the more than 200,000 individuals wait-listed for services. 30 years ago, we called this situation a crisis. Today, let’s call it what it really is – a systematic failure.
Policy and politics are at the root of DSP salaries and workforce instability. Medicaid is used to pay the salaries of DSPs, so when health care reform is talked about, it includes long-term services and supports for people with disabilities. DSPs must be at the table. In every state, every year, wage and rate increase campaigns are launched, and employers and advocates are usually the ones asking for increases, or bringing DSPs to state capitols to support their asks. The voices of provider agencies and advocates are necessary and important, but now DSPs must step forward and tell their own stories, by themselves, and not couched in an ask for rate increases organized by their employers. And if we are to see real change (living wages, an occupational title recognized by the Bureau of Labor Statistics) DSPs must get savvy with individual constituent advocacy, policymaking, and initiating change. They must bring a grassroots approach to finding solutions with policymakers and take ownership of this critical issue. Organizations play a critical role as allies by creating a culture where DSPs are encouraged to speak up about what they need to so they can support people with disabilities in living their best lives.