Fighting for DSPs is a Part of the Disability Rights Movement

Direct Support Professionals (DSPs) provide daily support to people with intellectual and/or developmental disabilities (I/DD) so they can live and participate in their communities as friends, neighbors, coworkers, students, family members, volunteers, voters, and taxpayers. Ideally, these supports are provided inside the individual or family home and in typical community settings, allowing other family members to work and have respite from their daily caregiving. As we celebrated the National DSP Recognition Week last week, I wanted to take a moment to reflect on the powerful role DSPs play in the lives of millions of individuals with significant disabilities and their families.

In my career as a disability rights advocate and systems-change expert at the federal level, I have had the distinct privilege of meeting numerous individuals with I/DD and their DSPs in the course of my work. I am always so inspired when I see the special bond that some DSPs have with the individuals they are supporting. I think of Rachel, who supported a young man who loved rap music, pizza, and the ladies. As he started belting out Jay-Z’s “99 Problems” to me when I entered the back of a gourmet pizzeria where he worked, Rachel started dancing around a bit while at the same time making sure attention was focused on the art of the pizza-making ritual (a passion that the budding chef & rapper thrived on). Or Sara, who supported two individuals with disabilities who chose to be roommates in a suburban neighborhood, including a millennial who has come to be known as Utah’s resident expert on chickens. Sara made sure to bring in a carpenter to help the young man build a chicken coop out back, that was nicer than the first apartment I lived in when I came to DC almost 25 years ago. To so many DSPs, this work isn’t just a job – it’s a passion. And a commitment to assuring that the people they are supporting have the same opportunities and access to participate fully in society that the majority of us take for granted.

As stated in the University of Minnesota’s Institute on Community Integration’s 2018 publication, Direct Support Workforce Crisis: A Systemic Failure,

The direct support job is highly complex and requires sound judgment and significant skills that include independent problem-solving, decision-making, behavioral assessment, crisis prevention and intervention, and communication. DSPs are interdisciplinary professionals because their job duties resemble many tasks typically completed by teachers, nurses, allied health professionals, social workers, counselors, and others. Highly effective DSPs are skilled at developing strong relationships with those they support and their families and are flexible enough to change depending on each person’s needs and abilities.¹

The direct support workforce is one of the highest in demand in the U.S., and the pipeline for people entering the profession of direct supports is not keeping pace with the number of DSPs needed by individuals with I/DD and their families. Low wages, unaffordable benefits, limited training and development, and lack of career advancement opportunities make this work undesirable for many people. DSPs are paid between $9.55-15.03/hour, averaging $11.67 per hour, well below the federal poverty level (FPL) for a family of four. Half of DSPs rely on government-funded and means-tested benefits and most DSPs work two or three jobs. In essence, we are asking DSPs to live a life of poverty as a price for committing to a critical profession aimed at providing an array of complex supports to assure that our friends, family members, and colleagues with I/DD are able to live, work and thrive in the same communities we all engage in. Thus, it is no wonder that the average annual DSP turnover rate is an astonishing 45 percent (range 18–76 percent), with average vacancy rates of more than 9 percent.

There are a number of conditions that have contributed to the growing DSP workforce crisis:

• high staff turnover;
• growing demand for services due to the growth and aging of the U.S. population in general;
• increased survival rates for people with I/DD;
• demographic shifts resulting in fewer people moving into the DSP workforce;
• persistently non-competitive aspects of direct support employment, including low wages, poor access to health insurance, and lack of paid time off (PTO) and other benefits;
• tightening of immigration work visas;
• high stress and demands of direct support employment, including round-the-clock, seven days-a-week work;
• insufficient training and preparation for DSP roles; and
• lack of professional recognition and status for skilled DSPs.²

These realities put people with I/DD who need assistance at great risk of harm as well as potential placement in large segregated models of care or institutionalization. Expansion of this workforce with competent DSPs is not possible without significant improvements in how they are recruited, on-boarded, and developed. These challenges impact individuals, families, and community providers who are finding it increasingly difficult, if not impossible, to find and keep high quality employees.

Let us also acknowledge the increased risk DSPs have of contracting the COVID-19 virus as essential workers on the front lines. When DSPs don’t show up for their jobs, people with I/DD are left isolated, alone, and often without proper supports to complete activities of daily living.

Policy makers and their allies in the private sector have been slow to invest in implementing solutions. It will take courageous leadership at the federal level to fund and ensure implementation of targeted solutions to address this crisis. Without bold and swift action, the long-term services and supports (LTSS) system is threatened for all people with I/DD who rely on it to meet their most basic needs.

In 2017, the President’s Committee for People with Intellectual Disabilities (PCPID) published ten specific policy recommendations to resolving the direct support workforce crisis, which include:

• improving professional identity and recognition;
• teaching business and organization leaders skills to improve their ability to recruit, select and retain direct service employees;
• using self-directed services that permit individuals and families to recruit, select and retain their own DSPs;
• using worker cooperative and independent provider models;
• using competency-based training models that lead to credentialing or certification of staff and yield wage increases; and
• using technology-enhanced supports.²

TASH fully supports these recommendations and looks forward to partnering with leading organizations (including the National Association of Direct Support Professionals, the American Network of Community Options and Resources, and many others) in this space to advocate for their implementation over the next few years. As the PCPID stated in the 2017 report, “the direct support workforce is where the rubber hits the road in the LTSS industry, and there is no issue more pressing in regard to sustainability of service provision for people with ID than responding to the serious crisis it now faces.”

On the advocacy front, there is much more we can and should be doing to fight for the rights of DSPs – and to assure they have the training, technical assistance, wages and benefits reflective of the critical roles they play in the lives of individuals with significant disabilities. Frankly, it’s morally reprehensible to fight for equity in wages, benefits, career advancement and on-the-job supports for individuals with I/DD and simultaneously ignore the lack of sufficient training, supports, and wages for the individuals that assist people with I/DD on daily basis. If we want to attract DSPs with the skills, competencies, experience, and creativity that also embrace the values of person-centeredness, self-direction and supported decision making that TASH’s membership holds so dear, then we have to be allies to the DSP workforce and fight to elevate their standard of living and professional supports as well.

Let’s extend the sentiment behind National DSP Recognition Week and fight for the DSP that values individuals with IDD and advocates and supports them every day to achieve their optimal potential and live their best lives in the community.

Notes

1. University of Minnesota-Institute on Community Integration. IMPACT. Volume 31, Number 1. Winter/Spring 2018. https://ici.umn.edu/products/impact/311/#Cover.

2. President’s Committee on Persons with Intellectual Disabilities (PCPID). 2017 Report to the President — America’s Direct Support Workforce Crisis: Effects on Individuals with Intellectual Disabilities, Families, Communities & the U.S. Economy. https://acl.gov/sites/default/files/programs/2018-02/2017%20PCPID%20Full%20Report_0.PDF.

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Serena Lowe is the Founder & Principal at AnereS Strategies and the interim Executive Director of TASH. Prior to this role, she was a Senior Policy Advisor with the Administration on Community Living’s Office on Policy Analysis & Development, focused on CMS HCBS implementation. Before her work for ACL, she was employed in a variety of roles in the field of federal government relations, including for the U.S. Department of Labor, a Fortune 100 global biopharmaceutical company, a top 20 national lobbying firm, and two former Members of Congress. She holds a B.A. in International & Public Affairs from Westminster College; an M.P.H. in International Health Policy and M.A. in International Development Policy from George Washington University; and a PhD in Public Administration from American University.