BY GAIL FRIZZELL
A conservative estimate is that there are more than 1 million people with I/DD waiting for services that may never come.
My 30-year-old daughter, Lauren, loves her home in a town just a 20-minute drive from Mom’s. It meets all of her wants and needs and has a lovely view from her bedroom window of woods, and an occasional bear. She’s lived there for five years now. Within the next nine months, Lauren may be forced to leave her comfortable little home. Life as she knows it will end. Lauren has severe, multiple disabilities, and she can no longer find staff to provide the support that she depends on to live her life.
A WORKFORCE CRISIS
The system of government-funded supports and services that is designed to meet the needs of individuals with developmental disabilities is facing many challenges. Individuals are presenting with a far wider variety of intellectual, physical, and behavioral challenges than ever before. They are living longer. And, they are claiming their right to make choices about where and how they will live their lives. But the greatest challenge to be overcome at this time, before any of the others can be addressed, is the increasing lack of a worker pool, adequate in capacity and skill, to provide the direct support that enables individuals to survive each day.
Five years ago, the issue for Lauren was picking the right Direct Support Worker (DSW) from the people that applied. Now, she has no applicants from which to pick. When Lauren placed an ad for a caregiver five years ago, she’d receive up to 70 calls about the position. She’s been trying to fill one part-time position for over two years now. In the last 10 months, she’s had one applicant, who didn’t show for the interview. One of Lauren’s support workers will be retiring next spring and two of the three remaining staff, both working two jobs, are beginning to talk about getting too old to continue meeting Lauren’s physical care needs. I’m very afraid for her.
I will be with her to love and support her for as many years as I am able, but after years of abusing my body in order to care for hers, I can no longer provide her physical care either. Lauren needs well trained, caring support staff in order to survive. Her hard-won independence is about to fall apart and I don’t know what the alternative will be. Whatever it is, it won’t be her choice.
It took a great deal of effort to enable Lauren to be independent. With the experience gained during 20-some years of advocacy, I was able to piece together seven funding sources to support her adult life. None of them are designed to be coordinated into an adult life for a young woman with developmental disabilities. Different rules, different parameters, competition for resources, restrictions on use, all create a complicated and difficult puzzle that took, and continues to take, great effort, time, and patience to piece together into a complete vision for Lauren’s life. But, it is proving to be an ephemeral vision.
Lauren is not alone in facing a risky future. The lack of a welltrained, stable, and accessible worker pool is having a significant effect on the entire system and the individuals who depend on it. Huge sums are being spent compensating for turnover and vacancies. The necessity to not only meet current needs in direct support, but expand services to meet the growing need, is hampered by the inability of providers to staff their existing programs, let alone develop new ones. (Baffuto, 2008; Kansans, n.d.) “…reports are increasingly common of service providers who refuse requests to expand services to meet growing demand because of inability to recruit and retain the workforce needed to do so.” (Report to Congress, 2006) And, the need to focus on filling positions instead of quality of care is impacting the safety, quality of life, and personal choices of individuals.
• A report by Hewitt, Larson, and Lakin (2000) notes that individuals who choose self-direction (a pre-authorized budget used to purchase needed supports instead of provider managed services) may have the funding to pay for staffing, but it goes unutilized when workers can’t be hired. Their desire to self-direct places them at risk of experiencing vacant shifts, inconsistent care, and frequent hiring and training struggles. They report that a considerable proportion of Medicaid waiver resources went unspent because families were unable to find people to provide the supports they needed.
• A 2006 Report to Congress summarized the findings of a 2000 Wingspread Conference that there is “… concern that the increasingly complex needs of people who receive supports in home and community- based settings cannot be met by the people who are currently being recruited and employed in the field.” (Greene, 2000)
• A report by Hewitt and Lakin (2001) stated, “This workforce crisis has serious and detrimental effects on the lives of people who receive community supports. Perhaps the most detrimental effect is a revolving door of support staff, which effects the quality of support by creating a diminished ability to: 1) develop and maintain relationships of support, 2) understand and develop mutual respect between direct support staff, individuals who receive support and their family members, and 3) develop trust with every new support staff person that enters the person’s life. Recruitment and retention concerns have been noted by consumers, parents, service providers, and policy makers. It is inconceivable to imagine that when there are a lot of vacant DSP positions, an increased use of overtime and a DSP turnover rate that averages 50% there is not a resulting negative effect on quality. Without continuity, quality, commitment, and competence the opportunity for people with mental retardation and related conditions to become full citizens and active community members is greatly diminished…… The reality is that the nature of the current workforce crises makes it even difficult to provide basic care such as self-care and medical support.”
• Families struggling to care for individuals with developmental disabilities are impacted by vacancies resulting in their doing without family support services such as respite and personal care. Providers assign direct support workers to residential and vocational programs which cannot provide the “fall-back” care that families have no choice but to provide. (Hewitt, Larson, & Lakin 2000)
(Note: Although many resources quoted in this paper are up to 15 years old, they are unfortunately still relevant and accurate. Also, consistency is lacking in the terminology for direct support workers. The terms direct support professional and personal care assistant are also widely used.)
In the early twentieth century, institutions provided the only hope for parents looking for care for their child with developmental disabilities. These state -run hospitals, usually run by a physician, provided primarily custodial care to their “patients”. The people that cared for them, logically, considered health care workers.
In the late 1960s, Wolf Wolfensberger outlined the perceptions that society continued to use to frame their stereotypes of individuals with disabilities and that defined their care. They were:
Sick– patients, in need of a hospital setting
Subhuman – animal like, vegetative, not deserving of human rights
Menaces – evil, dangerous, in need of segregation
Objects of pity – suffering, incapable of learning
Burdens of charity – a drain on public resources, contemptible
Holy innocents – eternal children (parallels)
It wasn’t until the 1970s and 1980s that a series of government acts recognized and protected the rights and needs of individuals with the newly-defined identity of developmentally disabled. Unfortunately, the stereotype that individuals are sick and burdens of charity is perpetuated by the fact that services and supports are funded primarily by Medicaid, a mechanism designed to provide health care for low income families and individuals.
Medicaid has taken steps to recognize the rights of individuals with developmental disabilities to live in the community and to have choice about how they will live their lives. New regulations require that services guarantee community based, person-centered supports and individual choice. Although the model of service provision has changed, the funding approach has remained the same. Institutional care remains fully funded, but community based supports are limited in quantity and scope, significantly impacting an individual’s ability to obtain adequate supports in the community. In addition, institutional workers’ pay rates are thirty to thirty-five percent higher than community based DSWs (and institutional turnover rates are fifty percent lower). (Report to Congress, 2006)
The switch from an institutional model to community based support has required considerable change in the role of the DSW. “This decentralization of community support services has greatly increased the challenges faced by DSPs in fulfilling their roles. Increasing use of in-home services, supported living arrangements, and small group homes require much greater skill, judgment and personal accountability on the part of DSPs. DSPs must practice those skills with far less direct supervision and access to on-site consultation from professionals with advanced training in health services, psychology or other relevant disciplines than when DSPs worked predominantly in congregate care settings.” (Larson, Lakin, & Hewitt, 2002) “This shift has produced roles with greater autonomy and responsibility, and increasingly this autonomy and responsibility is applied in support of persons with greater levels of intellectual, behavioral, health and functional impairments.” (Report to Congress, 2006)
Service descriptions in state program manuals outline and require a standard of support far beyond the “babysitting” expectations of years ago. A great deal more is expected of DSWs than physical care, facilitation of daily living, and assurance of safety and well-being. DSWs are required to do all of that while figuring out how to teach skills to individuals with varied learning difficulties, facilitate community living and play for individuals with a wide variety of physical, behavioral, and cognitive challenges, and prepare and assist individuals in acquiring and keeping jobs. They must do all of this in community settings ill-prepared to meet the needs of individuals with developmental disabilities and unwilling to accept them. Yet, pay rates, based on Bureau of Labor Statistic guidelines for health care workers (whose job description requires much less of) do not reflect these new expectations.
We are no longer in a service system where high school graduates can be hired, put through some basic training, and expected to produce the outcomes outlined in current service descriptions. To expect service providers or, in the case of individuals who hire their staff directly, the individuals themselves or their families, to train direct support staff to the level of competency that should be expected, is seriously unrealistic.
In order to support Lauren, her direct support staff must help her attempt to develop interests, activities, and friendships in her rural community. This takes an experience, skill, and responsibility level far beyond simply driving her ramped van and addressing accessibility issues. They must read Lauren’s mood, the noises with which she attempts to communicate, and her body language in order to know how and when Lauren can successfully be involved in community activities. There is a fine line between expecting the community to tolerate differences and disruptive levels of noise and behavior. Lauren can be sweet and patient or boisterously agitated and intolerant of places she does not wish to be.
Lauren’s staff must meet all of her personal care needs – grooming, showering, and toileting. They must prepare her food and feed her. They must transfer her from wheelchair to bed, toilet, shower chair, recliner, and stander. They must care for her when she is sick as well as monitor and deal with her seizure activity. They must care for her home. All of this must occur 24/7/365. Right now, though, keeping Lauren staffed is about survival – making sure that all shifts are covered, her basic needs are met, and that she is safe.
Addressing quality of life – those community connections and stimulating activities that add color and value to our lives – is, sadly, far down on our list of priorities.
Lauren may never be able to prioritize the quality of her life. The statistics that portend her future are frightening.
• 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, who traditionally have filled these jobs is expected to increase only by 7%.” (Report to Congress, 2006)
• “Several small scale studies have reported turnover rates for personal care assistants from 44 – 65%. The 2007 National Home Health Aide Survey of 56,000 workers found 35% intended to quit their job within the next year. One review of studies reported turnover rates for DSPs caring for people with intellectual and developmental disabilities as: 65% among inhome workers, 50% among residential workers and 69% in employment services”
(NJ Council on Developmental Disabilities, 2014)
• “Given the current national average annual DSP turnover rate of approximately 50%, the estimated 19,000 DSPs who will need to be recruited on average each year to accommodate growth in demand will make up only 4% of the total required DSP recruitment. At current rates of turnover, 96% of all DSPs hired between 2003 and 2020 will be hired to replace DSPs who leave existing positions (and the people with ID/DD they were supporting).”
(Report to Congress 2006)
• “The most commonly used, conservative rule-of-thumb for estimating the per worker cost of turnover in the overall U.S. economy puts the comprehensive cost of replacing a lost employee at 25% of his or her annual compensation amount. This estimate includes both direct and indirect costs. The 25% rule-of-thumb applied to US Bureau of Labor Statistics estimates of the annual wages of all direct-care workers suggests a total cost of turnover per employee in the range of $4,200 to $5,200.” (American Network of Community Options and Resources, 2009) According to community providers, that statistic from six years ago has now risen to over $6,000 per employee.
• In 2002, Hall and Hall summarized 50 years of research indicating that lack of stable relationships between DSWs and individuals resulted in issues with communication, behaviors, and their ability to live successfully in community settings.
• “The paraprofessional long-term care workforce is the cornerstone of America’s long-term care system. The fundamental, long-term challenge is how to develop a committed, stable pool of employees who are willing, able and skilled to provide quality care. The challenge is evident in a survey of administrators in Pennsylvania in which 79% reported duties and responsibilities of DSPs had increased, 75% said the medical fragility of people served increased, and 70% said behavioral problems of people served had increased over the past 10 years. However, only 14% said the quality of the DSP applicant pool had increased, while 30% said it had stayed the same, and 56% said it had decreased.”
(Report to Congress, 2006)
• A report from The ARC (2011) stated that “….necessary supports and services are hard to find and the situation is getting worse.” They supplied the following statistics:
o More than 75% of families report they can’t find afterschool care, non-institutional community services, trained, reliable home care providers, summer care, residential, respite and other services.
o A conservative estimate is that there are more than 1 million people with I/DD waiting for services that may never come.
o Nearly half (46%) of parents/caregivers report that they have more caregiving responsibilities than they can handle.
o 82% report problems balancing other family responsibilities (e.g., marriage, other children, housework.)
o 1 out of 5 families (20%) report that someone in the family had to quit their job to stay home and support the needs of their family member.
o 80% of families report that they don’t have enough money to pay for the support or care that their loved one needs.
(Editor’s Note: Part 2 of this article will be published in EP Magazine’s February 2016 issue.)
ABOUT THE AUTHOR:
Gail Frizzell is the parent of an adult daughter with severe, multiple developmental disabilities. She has been an active parent advocate for over twenty years primarily in the areas of special education, family support, and self-direction. She is currently chairing the Direct Support Workforce Crisis Workgroup under the aegis of the Family Support Coalition of New Jersey.
Access Press Staff. Poverty pay for professional work? Commitment to community: Advocates launch
5% Campaign. (2013, August 10). Access Press. Retrieved August 6, 2014, from http://www.accesspress.org/2013/08/poverty-pay-for-professional-work- commitment-to-community-advocates-launch-5-campaign/
American Network of Community Options and Resources. 2009 Direct Support Professionals Wage
Study. Retrieved on August 29, 2015 from
The ARC. (2011, June). Still in the Shadows with Their Future Uncertain. Retrieved August 2, 2015 from http://www.thearc.org/document.doc?id=3672
Baffuto, T. (2008, February 19). The ARC of New Jersey’s 10% Solution. Retrieved August 6, 2014, from www.arcnj.org/file…/d7977e4b-82a9-4937-bdea-d983db9c4e34
Brill-Ortiz, J. (2014, May 13). Why Direct Care Worker Wages Are Key to Closing the Gender Wage Gap. Huffington Post. Retrieved July 31, 2015 from, http://www.huffingtonpost.com/jessica-brill-ortiz/why-directcare-worker-wages-are-key-_b_4931203.html
Brill-Ortiz, J. (2014, March 12). The New Face of Our Economy. Huffington Post. Retrieved July 31, 2015 from, http://www.huffingtonpost.com/jessica-brill-ortiz/the-new-face-of- our-economy_b_4576106.html
Diament, M. (2011, June 15). Disability Caregivers Struggling Financially, Emotionally. Retrieved
October 6, 2015, from http://www.disabilityscoop.com/2011/06/15/disability-caregivers-struggling/13339/
Greene, A. (2000). Barriers to self-determination — what’s next?: A service coordinator and point of
entry perspective. In Measure for Measure: Person centered quality assurance. Wingspread conference proceedings, Racine, WI.
Hall, P.S., & Hall, N.D. (2002). Hiring and retaining direct-care staff: After fifty years of research, what do we know? Mental Retardation
Hewitt, A, Lakin, K.C. (2001, May). Issues in the Direct Support Workforce and their Connections to the Growth, Sustainability and Quality of Community Supports. Retrieved July 31, 2015, from
Hewitt, A. (2014, October 17). A Sustainable and Supported Workforce: The Key to Quality Community Life. Lecture presented at Developmental Disabilities Lecture Series in The Hotel Woodbridge at Metropark, Iselin.
Hewitt, A., Larson, S.A. and Lakin, K.C., (2000) An Independent Evaluation of the Quality of Services and System Performance of Minnesota’s Medicaid Home and Community Based Services for Persons with Mental Retardation and Related Conditions. Minneapolis: University of Minnesota.
Kansans Mobilizing for Direct Support Workforce Change. (n.d.). Retrieved August 6, 2014, from http://rtc.umn.edu/docs/KSFinalReport.pdf
Larson, S., Lakin, K.C., & Hewitt, A. (2002). “Direct support professionals: 1975 – 2000.” In D. Croser, P. Paker, & R. Schalock (Eds.) Embarking on a new century: Mental retardation at the end of the 20th century.
Washington, DC: American Association on Mental Retardation
Legislative Budget and Finance Committee. (1999). Salary levels and their impact on the quality of care for client contact employees in community-based MH/MR programs. A report in response to House Resolution 450. Harrisburg, PA
The Lewin Group. (2008). A synthesis of direct service workforce demographics and challenges across intellectual/developmental disabilities, aging, physical disabilities and behavioral health. Washington, DC: Author.
Macbeth, J.M. Commitment, Capacity and Culture: Solutions for the Direct Support Workforce Crisis. (August 2011) The National Alliance for Direct Support Professionals.
National Direct Service Resources Center. (2009). DSW RC Worker Background Handout. Retrieved
August 6, 2014, from http://www.dswresourcecenter.org
The New Jersey Council on Developmental Disabilities Recommendations on the Direct Support
Professional Workforce. (2014, May 1). Retrieved October 7, 2015, from https://www.njcdd.org/2012-04-23-13-42-40/position-statements/direct-support-professionals
Parallels in Time: A History of Developmental Disabilities. (n.d.). Retrieved September 12, 2015, from http://mn.gov/mnddc/parallels/index.html
PHI Fact Sheet. (2011, February 1). Retrieved October 7, 2015, from
http://www.phinational.org/sites/phinational.org/files/clearinghouse/NCDCW Fact Sheet- 1.pdf
Seavey, D. (2004, October 1). The Cost of Frontline Turnover in Long-Term Care. Retrieved October 7, 2015, from http://phinational.org/sites/phinational.org/files/clearinghouse/TOCostReport.pdf
Scala, E., Hendrickson, L., & Regan, C., May 2008. “Strategies for Promoting and Improving the Direct Service Workforce: Application to Home and Community-Based Services.” Rutgers Center for State Health Policy, Institute for Health, Health Care Policy and Aging Research.