The Direct Support Workforce Crisis: A Parent’s Perspective – Part Two

BY GAIL FRIZZELL

For parents to be confident that their children could survive in this world without them, we would need a direct support workforce, of adequate number, trained to provide the supports our children need to be safe, healthy, and happy.

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. (Part one of this artcle appeared in the December 2015 issue of EP)

CLIMATE OF EMPLOYMENT

Low wages, minimal training, ambiguous awareness of the role, and the lack of career path contribute to public perception that direct support is a low end, low value job. The understanding of the role outside of the developmental disability community is very limited and primarily informed by media exposes and depressing stories.

Adding to the lack of status of DSWs is their relationships with employers. Turnover, low pay, and the bottom of the workforce ranking contributes to poor or undeveloped relationships, a lack of confidence, and undervaluing. (The Lewin Group, 2008)

The public perception of what DSWs do remains in custodial parameters— protect and provide care for the intellectual equals of children. Any profession that involves mostly women (DSWs are 89% women), requires skills that are equated by society with mothering (physical care, guidance, protection), and is related to those considered less fortunate, less able, less equal, is undervalued by our culture. We are asking far more of DSWs than ever before, but we are neither training them to provide it nor setting compensation rates which align with the outcomes expected. Is it any wonder that this system is experiencing unprecedented vacancies and that turnover is crippling the quality of care and costing the system millions of dollars each year?
• DSWs are “among the lowest paid workers in the health care and human services fields and in the economy at large.” (National Direct Service Resources Center, 2009)
• “The 2013 annual update of federal Health and Human Services poverty guidelines indicates that $11 an hour or $22,000 a year is below the poverty threshold of $23,550 for a family of four. An income below $31,322 would make an individual eligible for programs including: Head Start, the Food Stamp Program, the National School Lunch Program, the Low-Income Home Energy Assistance Program and the Children’s Health Insurance Program.” A DSW could apply for and receive the same supports that the person they are supporting requires.” (Access Press Staff, 2013)
• “Direct care work is expected but not respected……Direct care workers also have few opportunities for advancement and the higher wages that often accompany it. As a result of these low wages, direct care workers and their families are frequently forced to depend on public benefits like Medicaid and food stamps (in 2011, 49% of direct care workers lived in households that relied on public benefits).” (Brill-Ortiz, 2014)
• “For a start, they (direct support workers) are among the most poorly compensated of all U.S. workers. Their median hourly wage was $10.63 in 2012, which was less than they earned 10 years earlier, after adjusting for inflation… They also have one of the nation’s highest rates of on-the-job injuries.” (Brill-Ortiz, 2014)
• Supporting these findings is a study funded by the Center for Medicare and Medicaid Services which concurred that:
o “In general, wages and benefits are the two factors that have been consistently identified in studies as factors associated with higher rates of turnover for DSWs…”
o “Careers in direct support work often do not provide livable wages. Low wages translate into low family or household incomes. In 2006, just about a quarter of DSWs employed in home health care services lived in families with incomes under the federal poverty level.”

o “A high proportion of DSW households rely on some form of public assistance in order to make ends meet. This assistance can be found in the form of food assistance, cash assistance, housing assistance, transportation and energy assistance, public health care and/or Medicaid.”
o And, recommends: “Implement strategies to increase DSW wages across sectors and settings, ensuring that this workforce earns family sustaining wages in every community throughout the U.S. Wage scales should be developed that are commensurate with competence, experience and levels of responsibility” (The Lewin Group, 2008)

THE COST OF CRISIS

It is estimated that the annual national cost of turnover in DSWs is $784 million. (NJ Council on Developmental Disabilities, 2014) This cost to the system is a poor use of funds, neither adding quality nor capacity to a struggling system. In an additional toll on taxpayer dollars, due to the low wages contributing to that turnover, almost half of DSW households rely on means tested public assistance. (PHI National 2011)

This system in crisis also takes a toll on the financial well-being of family caregivers. Sixty-nine percent of family caregivers report that they have had to decrease their work hours or take unpaid leave. Seventy percent report that they have experienced work-related issues due to their caregiving responsibilities. On a whole, they experience loss of wages, health insurance and benefits, retirement savings, and social security benefits. (Family Caregiver Alliance, 2011) And, after decades experiencing the physical and mental toll of caregiving, eighty percent say that their wellbeing in retirement is now in jeopardy because they have spent their savings on care for a loved one with a developmental disability. (Disability Scoop, 2011)

Without adequate supports, families whose loved one requires physical care are experiencing the additional cost of their own physical health. Lifts, transfers, and other hands-on care of adults—sometimes larger or heavier now than their parents—often results in injuries, chronic pain, and the need for medical interventions. The need for treatment and recuperation is often cast to the side because it would interfere with the provision of care. Also, individuals with severe or complex behavioral issues, requiring significant and difficult levels of management, deplete the stamina of aging parents and disrupt family stability.

There are no definitive studies on the rates of depression or mental health issues in parents caring for an adult child with developmental disabilities. Instead, there are only the quiet whispers and shared confidences of parents about the drugs and doctors that are attempting to keep them functioning.

For providers, the cost of the workforce crisis is extensive including: separation (administrative costs, processing costs, and increases in unemployment insurance rates), vacancy (overtime and temporary worker costs),  replacement (advertising, interviewing, screening, and testing) and training and orientation costs. Adding to those expenses are increases in worker injuries causing lost days and increases in workman’s compensation rates, as well as lost productivity due to inexperienced workers and use of temporary staffing. (Seavey, D., 2004)

It could be argued that we are at the point where the cost of not fixing this problem far outweighs an investment in fixing it. It is in the best interest of all stakeholders that we stop this expensive descent into a system increasingly impotent in meeting the needs it was designed to address.

CONCLUSION

For Lauren, the cost of this workforce crisis will be the loss of her carefully crafted adult life—a life in which a young woman with many challenges has managed to find happiness, where she has gained an independence of which few thought her capable, and where her disabilities are less of a focus than her abilities. And, up until now, where people without a familial bond, have chosen to care for and about her. But that will soon be over.

What is the alternative for Lauren? A group home? Besides the fact that it is not Lauren’s choice, what group home? Providers cannot expand capacity without adequate staff. Thousands of Laurens wait for an open slot. Providers are struggling to staff their homes and, though their efforts are laudable, I would fear for Lauren’s health and safety. For every tale of an amazing DSW that cares for their child, there are other parents of adults residing in group homes, who relate their experience of workers who cannot read instructions, a prescription bottle, or communicate in writing, where workers barely out of high school with little training, have the responsibility of care for individuals with challenging and varied needs, where the focus is on systemic requirements over person-centered choices. But, what else is left – a nursing home? Over my dead body.

Parents do not unnecessarily fear a future for their children without them in it. It is all too apparent that this vulnerable population, with so limited an ability to speak up, complain, or ask for what they need, is not being seen or heard above the raucous advocacy of more visible populations. Few of our children can fight for themselves. Few can advocate, when we can no longer be by their sides, for the right to be supported by people adequately prepared and compensated to provide that support.

For parents to be confident that their children could survive in this world without them, we would need a direct support workforce, of adequate number, trained to provide the supports our children need to be safe, healthy, and happy. And, if our children are ever going to be respected members of their community, the people who support them must be respected as well. A concerted effort must be made to not only change the public perception of direct support to one of value – a respected aspiration— but also to provide a living wage, adequate benefits, and opportunity for advancement as recognition of the difficult, worthwhile, and rewarding work that is direct support.

When the day comes that Lauren must leave her home, she will not have the ability to understand why. I would not have the ability to explain it to her, anyway. She has answered well the call we all attempt to answer: “be all that you can be.” To the world around her, it seems not to matter how brave she has been or how gracefully she has accepted challenges most of us cannot fathom. The world will have failed her in an unconscionable way. Her simple life will fall apart without the DSWs she relies on to survive. And, she will be left unable to ask the most important question in her silent world: Who will be there to care for me tomorrow? •

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.


 

References

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 http://www.ancor.org/sites/default/files/pdf/ancor_wage_data_summary_2009.pdf

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
http://rtc.umn.edu/docs/hcfa.pdf

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.

Selected Caregiver Statistics. (2012, December 31). Retrieved October 6, 2015, from
https://caregiver.org/selected-caregiver-statistics

U.S. Department of Health and Human Services, Assistant Secretary for Planning and Evaluation, Office of Disability, Aging and Long-Term Care Policy. (2006, January). The supply of direct support professionals serving individuals with intellectual disabilities and other developmental disabilities: Report to Congress.
Washington, DC: Author.

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