The Struggle Is Real in the Disability Services Industry

A couple of weeks ago, I spoke with a gentleman about services for the I/DD (intellectual and developmental disabilities) population and some of the struggles that our industry faces.  He stated that he had a family member with disabilities who was very well taken care of, received ample funding, and that his family had a direct line of communication with the leadership of the Missouri state government.  Based on his specific experience, he was left wondering why we were seeking out grants and fundraising dollars.  The industry, from his perspective, was operating just fine.  While I respect his individual experience, I also believe it exists as an outlier, a unique experience that is not indicative of most people who receive services in the I/DD system.

Research shows that people with intellectual disabilities are living longer, in large part due to advances in health care and support services.  People with a mild intellectual disability, for example, now have the same life expectancy as the general population.  While this is a significant achievement, it also presents several issues that we must face head on in the next several years.  As people with disabilities live longer and experience issues related to aging, often more support services are needed to ensure a person’s quality of life.  Increased services places additional strain on an already burdened Medicaid system, and funding cuts to Medicaid and services for people with disabilities exacerbates the issue.  This next fiscal year, for example, we are facing a 1.4% rate cut, a loss of more than $60,000 in revenue.  Just this week, an organization from whom we receive major grant funds informed us they were $2 million shy of their campaign goal and thus our grant was being reduced from $50,000 annually to $20,000.

In addition, as the baby boomer generation reaches retirement age and transitions out of the workforce, the industry faces a shortage of direct support professionals. Gail Frizzell of EP Magazine reports that “the need for direct support workers is expected to increase 37% by the year 2020.  This increase in demand will be occurring at a time when the labor supply of adults age 18-39 years that have traditionally filled these roles will only increase by 7%” [2].

Lack of sufficient funding drives employees to seek better pay in other industries, particularly in the for-profit realm that typically offers better pay and benefits.  Frizzell states a multitude of issues are combining to “create unprecedented competition for talent across all industries, which will further reduce available talent needed to support people with disabilities” [2].  In my own experience, I have weighed the pros and cons of the nonprofit industry and I can attest that it is not an easy decision to make.  A few weeks ago, a colleague of mine left his nonprofit job to work for a for-profit healthcare system.  When I asked him about the switch, he stated bluntly, “Once I had kids, I realized I need to take care of my family.”  The new job, he stated, was a substantial pay raise and he would be getting a health plan that would cover his entire family.  Unfortunately, the nonprofit organization he worked for could not match the highly competitive wage and benefits of the for-profit organization.  In a 2008 study, the National Direct Service Workforce Resource Center found: “Together, relatively low wages and benefits, minimal training, the absence of status, clear role definition, and career pathways often create the sense that [direct support worker] positions are low skill, dead end jobs. While the significance of the [direct support workers’] role in the provision of long-term care and community support has become more recognized by professionals and researchers, general public awareness of their role is very limited, out of date, minimized or vilified.” [3].  Statistics show that 16% of people working in home health care services lived in families with incomes under the federal poverty level [1].  Turnover rates for direct support professionals range from 44-65% and Frizzell notes a survey that found “56,000 workers intend to quit their jobs within the next year” [2].  The struggle is indeed very real.

Industry leaders must continue to advocate for funding for individuals with intellectual and developmental disabilities.  Adequate funding enables organizations to employ quality individuals, improving both retention and employee engagement.  Currently, there are several advocacy organizations (NADSP, ANCOR, etc.) who are working hard to professionalize direct support work.  Like nursing, direct support requires training, certifications, and, most importantly, a high degree of selflessness and desire to help others.  The National Association for Direct Support Professionals (NADSP) advocates a “comprehensive approach to address the need to build capacity within the direct support workforce.”  This approach includes:

  • “Allocate federal and state funding at levels sufficient to provide living wages and the benefits necessary to attract and retain qualified DSPs in home and community based services.
  • Provide credentialing opportunities, career pathways, and ongoing competency-based training and mentoring, embedded in public policy and sufficiently funded to create incentives for DSP participation.
  • Ensure frontline supervisors are adequately trained and support to effectively recruit, retain, and support DSPs.
  • Implement and evaluate the use of technologies as a universally-designed option for support while simultaneously providing relief to the increased demand for support and support workers.
  • Ensure DSPs have opportunities for needed training, mentoring, and professional development to effectively assist people with IDD to be fully included, valued, and participating members of their communities.”

Together we must build critical mass to make people realize that this industry needs to change fundamentally.  We owe it to the thousands of direct support workers trying to make a difference in people’s lives and seeking stability in their own lives.  We owe it to the people we support who want to achieve their dreams and realize their full potential.

To learn more, visit the American Network of Community Options and Resources (ANCOR) at and National Association for Direct Support Professionals (NADSP) at