US DIRECT SUPPORT WORKFORCE IN THE 21ST CENTURY
Authored by Julie Ann Racino
American Society for Public Administration
June 19, 2018
In 2018, the University of Minnesota (UMN) reaffirmed its leadership role in the US Direct Support Workforce and People with Intellectual and Developmental Disabilities and Other Disabilities in an Issue of IMPACT (Volume 31, No. 1). The government's "new management" indicates a current workforce crisis termed a "systemic and pervasive failure in the long term services and support system" in the US. The US Senate began a process in 2013 to examine the field of Long Term Care and to introduce the concepts basic to Long Term Services and Supports (LTSS), often within M-LTSS systems of managed care.
The US Direct Support Workforce, NYS
In New York State, beginning in the 1970s, we were delighted to be part of the first community group homes in the US, the first state work forces moving into the communities, the first University and Executive Office structures, and the development of new non-profit organizations and their expansion in local communities. Our organizations have mushroomed into NGOs in every state and almost every local community in the US.
At the time, I was part of opening the state's first community mental health agency, and working with state and local governments to develop planning and review procedures to assure the health and well being of the new residents and the existing community members. And indeed I was among the first to combine the private, non-profit and state, county and local sectors into working groups for the new family support services. Today, the CSEA (government) manager with the notebook on NewsChannel 10 is reminiscent of the first home visits.
Over the years, many of the original "programs" became health care funded (Racino, 2015), and for many years bore names such as psychosocial rehabilitation services, independent living and community support services, and even skills (and instrumental skills) of daily living. These schemas were researched, evidence-tested, and were even the base for the WHO (World Health Organization, 1999; WHO, 2013) classification of disabilities.
Deinstitutionalization and Community Support Workforces
The world begin to change in response to the exposes of institutions (e.g., Rothman and Rothman's Willowbrook Wars) described in Dr. Steven J. Taylor's accounts of deinstitutiona-lization in the US (e.g., Taylor & Searl, 1987; Conroy & Bradley, 1985). While most accounts discuss the 1960s exodus, via new drugs, from psychiatric centers in the US, intellectual and developmental disabilities were planned approaches, sometimes with judicial oversight.
While the community workforces continued to "simply expect" the traditional federal health care financing (e.g., HCFA) to reform from an old style institutionalized approach, the workforces continued to have strong support from the US Presidents. In 2015, in conjunction with the reform of the IDD (intellectual and developmental disabilities) facilities, Julie Ann Racino presented at ASPA in Chicago (2015) on the necessity for further work to target the nursing facility transformation to LTSS (Long-Term Services and Supports).
Indeed a worldwide class of deinstitutionalization researchers were created (e.g., K. C. Lakin of the University of Minnesota; David Felce from the University of Cardiff-Wales), and comparisons were made between population in the institutions and individuals in different models or setting types (e.g., group homes and foster care). Julie Ann Racino, Distinguished Lecturer, described the new 21st Century developments at NeCopa (Northeast Conference of Public Administration) in November 2017.
Professionalization of the Community Workforces
As most histories report, organizations such as the Arc began in basements and churches in the 1940s, then reached incorporation, and local-state-national status. The 1970s marked a period of negotiations between the state governments and non-profit organizations regarding institu-tionalized classes, not necessarily a priority of organizations such as the Arc. This became apparent later when the Arc was instrumental in removing stipulations on cost neutrality on the new Medicaid waivers making it easier to serve community classes. This party served as an independent broker at state government and non-profit negotiations.
Direct Support Professionals (DSPs), a new term for the workers associated with the specific National Alliance, are part of state Chapters from the 1970s and 1980s which called for wage parity with the public sector employees and their established unions. These sectors, by state-e.g., Connecticut, New York), repeatedly requested brokerage to better wages, better benefits, and better hours, working conditions, and professional and academic benefits (e.g., Lensink, State Commissioner, Connecticut; Racino, Rehabilitation Research and Training Center on Community Integration, Syracuse University, 1988). These sectors grew significantly in size, and continue to expand through dedicated legislative funds in states and at the federal levels. Competition in 2018 are reportedly from traditional health care organizations and hospital sectors (organized, union sectors).
University Education of Community Personnel
Julie Ann Racino's 2000 book Personnel Preparation in Disability and Community Life indicates the community support professional levels associated with the community workforces in the 1990s. These models expanded from the traditional medications, goal planning and behavioral interventions of institutional programs, to full scale, inservice programs, preservice and basic to advanced degree programs, continuing education credits, executive education, annual conferences certifications and accreditations, licensing, career ladders, national indicators, testing instruments, and self-advocacy and user-directed approaches.
From the beginning, Dr. Robert Bogdan (e.g., Bogdan, et al, 1974), our university research director, expressed concerns regarding professionalization of the workforce as advanced professional degrees were awarded, advanced research studies were approved, extremely high wages were paid to professionals (e.g., Vecchione home) within a home setting as model demonstrations, and conversely, a live-in, companion model was repeatedly preferred (Jean Vanier of L'Arche) which was never adopted by other than the religious groups. Professionalization (Wilensky, 1964), however, was reported as part of a trend worldwide across professions and fields which continues today (e.g., robotics and modernization).
Waves of parent-professionals and self advocates were described as the product of these endeavors by the "workforce sectors" (Racino, 2000) which hosted psychologists, social workers, "full state departments and civil service lists", residential agencies, vocational support agencies, housing developments and boards, foster or family care workers, child protective workers, counseling agencies, community services workers, and much more. The community sectors integrated its traditional agencies with new ones, and expanded its force and influence in local communities and worldwide.
However, the influence of small homes, family living, intermediate care facilities, vocational and residential training, independent living, and community jobs were among the taken for granted job sites for new workers in the fields (See, p.3 IMPACT, Hewitt, MacBeth, Merrill, & Kleist, 2018). The first entry of the residential classes for adults was cited by Racino in 1990 in a Personnel preparation book (Kaiser & McWhorter, 1990) which was current with the work of Michael Smull of the state of Maryland with US Education's Thomas Bellamy (Smull & Bellamy, 1991) to address the community crisis. These initiatives were followed by family support, home ownership and natural supports approaches in the local communities (e.g., Bradley, Knoll & Agosta, 1992: Hagner, Snow & Klein, 2006).
According to the University of Minnesota's Impact, the struggle to retain, recruit and maintain staff continues in 2018, together with the need for competency-based credentialing. An excellent racial and gender disparities article by Stephen Campbell (Policy research associate, Bronx, New York, 2018) compares the "entry level" direct support workers, nursing assistants, and home care workers; the comparisons are made on the basis of age, educational attainment, employment status, earnings and income, poverty level, public assistance, and health insurance status. The Impact issue also highlights a father with autism spectrum disorder, and confirmed self-directed services in 42 states in 2017.
As many of you know, the more likely comparisons are those of the "health care" sector on behavioral assistants and aides (See, Larson, et al, 2014 of UMN in Racino, 2014), and a hierarchy that includes MDs-psychiatry, Ph.Ds and Ed.Ds, and physicians assistants. The management and hierarchies are distinctly managed, and have distinctly different career tracks for workers and management. In particular, the distinctions made in the 1970s and 1980s compared the private and state sectors, or seldom, the "unionized to the non-unionized" sectors (See, changing public employee unions of the future, US, Kearney, 2009). These changes have been effected by the "distinct roles" and "divisions" these sectors have been taking on in the ensuing years of "devolution" (Racino, 2017 in US-UK) and reform of civil service, merit-based systems (e.g., Berry, 2000; Thompson, 2001).
According to reports at ASPA (American Society for Public Administration, 2015, Seattle, Washington), the corrections workforces are growing in the US taking a greater share of the personnel pie, and "worker pay" is being requested based on emotional distress. In addition, according to all parties, family caregiving and additional wages for the family to maintain a relative at home, e.g., in "early stages of Alzheimer's" is being advocated for at state legislatures throughout the US (AARP, 2017). The Direct Support Workforces, organized at the Gubernatorial and Legislative Levels for decades, has launched new state initiatives from Community Connections Career Partnership in Ohio, to the #beFair2DirectCare Campaign in New York. At the Public Personnel Management levels, workforce diversity (Choi, 2011; Guajardo, 2013) will continue as another governmental focus into the coming decade.
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