President Biden’s recent, wide-ranging executive order to improve our nation’s care system represents the most comprehensive step any president has taken to support care workers and family caregivers and to make care more accessible to working families.
We applaud this commitment to the direct care workforce, which includes childcare workers, personal care assistants, caregivers in nursing facilities, family caregivers, and direct support professionals. DSPs support individuals with intellectual and developmental disabilities in living full lives in their communities. Their complex work includes many tasks performed by caregivers, nurses, teachers, therapists, and more. And yet, this role is not well understood and has been overlooked in some of the recent news coverage surrounding the executive order. Efforts made to strengthen and professionalize the direct support workforce – evidence-based training, credentialing, mentoring, career lattices – can help raise the status of everyone working in direct care and will make a tangible improvement in the lives of people with disabilities. The April 27 reintroduction of legislation to create a standard occupational code for DSPs was welcome news and would create better understanding and measurement of the workforce. It would also help states determine more accurate reimbursement rates for support services.
Over the last three decades, through persistent advocacy, services for people with intellectual and developmental disabilities (IDD) have largely moved from segregated care in large institutions to a robust and highly varied network of community supports. Federal legislation codified the values of inclusion and access and the disability services field created a body of research and evidence-based practices that have resulted in meaningful advances in the self-determination and quality of life of people with IDD. Today, due to labor shortages and high turnover rates that pre-dated but grew far worse during the COVID-19 pandemic, many community programs for people with IDD across the country have started closing – some permanently. People in smaller residences are being moved to larger congregate facilities or back home to live with elderly parents. Waiting lists are growing. Most importantly, people with IDD, as well as their families, are experiencing dangerous service disruptions that put them at risk of losing their hard-won lives in the community. The gains made over decades are being reversed.
Meanwhile, the work of DSPs has become substantially more complex. They now support people with disabilities in a range of settings, including family homes, local businesses, intermediate care facilities, small group homes, vocational and day training programs. They work with people across the lifespan, helping them make informed decisions and seek competitive integrated employment, keeping them healthy and safe, dispensing medication, implementing medical intervention protocols, communicating with medical and other professionals, and identifying emerging signs of illness or disease. They provide assistance with daily living skills, encourage healthy lifestyles, and foster connections with family and friends. Their work requires skilled judgment and decision-making, teaching, counseling, creativity, and much more.
For all of this, DSPs earn about $14.50 per hour and their inflation-adjusted wages continue to decline. It is little surprise that the annual DSP turnover rate exceeds 43 percent.
The Institute on Community Integration at the University of Minnesota and other University Centers for Excellence in Developmental Disabilities have played an important role in training the support workforce and helping disability service providers respond to these challenges.
Our Direct Support Workforce Solutions group recently partnered with officials in Tennessee and Rhode Island to create tools and strategies for improving DSP recruitment and retention rates, for example. We’ve created realistic job previews that help explain the work to prospective DSPs, and stressed the importance of advocacy in the work. We also led a national effort to develop and validate the National Frontline Supervisor Competency Set, an important task in professionalizing the direct support workforce. We look forward to expanding these initiatives to recruit and retain workers as called for under the President’s executive order.
The President included disability in the conversation about our country’s dire caregiver shortage, and it is important to underscore the distinct roles played by professionals in this field. The solutions aren’t the same for a nurse or a direct support professional or an early childhood teacher, and it will be important to ensure that the training, education, and innovative funding opportunities created through this order address each of those fields.
As the President said, it will be up to Congress to make the additional, urgently needed investments in the care workforce, which will then need to be matched by state legislative bodies. The executive order opens a window of opportunity, however. If you have a loved one with a disability, or an aging parent, or young children, we urge you to let your representatives know how critical this workforce is to you and your family.
Amy Hewitt, PhD
Director, Institute on Community Integration
