Tuesday, June 19, 2018

US DIRECT SUPPORT WORKFORCE

US DIRECT SUPPORT WORKFORCE IN THE 21ST CENTURY

 Authored by Julie Ann Racino
American Society for Public Administration

June 19-25, 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 (e.g., NYS OMR-DD; Idaho Office of Mental Retardation, California Office of Mental Retardation and Developmental Disabilities; Arkansas Department of Mental Retardation) regarding institutionalized classes, "not necessarily a priority" of organizations such as the Arc-US. This became apparent later when the Arc was instrumental in removing stipulations on cost neutrality on the new Home and Community-Based (HCB) Medicaid Services Waivers (e.g., Smith & Racino, 1988, October) making it easier to serve community classes. This party served as an independent broker at state government and non-profit negotiations, including through decades at the university sector. 

          Direct Support Professionals (DSPs), a new term for the workers associated with the specific National Alliance of Direct Support Professionals, 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 NGO sectors, by state-e.g., Connecticut, New York and then nationally-ANCOR, NAPRF, repeatedly requested brokerage to better wages, better benefits, and better hours, working conditions, new community services, 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 "federally, state and locally tested" models (e.g., "National Issues in Housing", Racino, 1990;  "National Institute on Personal Assistance Services", 1992; "Independent Living and Support Paradigms", 1991; "Changing Roles of Service Workers", 1990; "Support Agencies and the Support Paradigm", 1992) 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, seminars and planning sessions, 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,  Taylor, et al, 1974), our university research director and federal center directors (See, above), 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, Founder of L'Arche International) which was never adopted (the Arc has live-in variations) by other than the religious groups. This period marked the awarding of the first educational Ph.D.s in community living in the US.

      During this period of the 1980s and 1990s, the government and university sectors supported a "positivistic" approach to evaluation and community development (e.g.,  Taylor & Bogdan, 1994), in contrast to the preceeding period of exposes. Professionalization (Wilensky, 1964), however, was reported as part of a trend worldwide across professions and fields which continues today (e.g., robotics and modernization). The university, NGO and governmental sectors became involved with "daily work" (e.g., development of integrated day services, 1987; parents and supported employment, 1989; foster care and permanency planning, 1987; quality support services, 1986; person-centered planning, 1987) ranging from regulations to legislation, financing, oversight, professional development, and program operations of "dual systems". 

       Waves of parent-professionals and self advocates were described as the product of these endeavors by the "workforce sectors" (e.g., Racino, 2000a to National Democratic Party, 2018, at "Molinaro, Republican for Governor") 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 "under the administrations of Clinton and Cuomo" (Andrew Cuomo, 2nd Term, Democratic Governor, NYS, 2018) integrated its traditional community agencies with new ones (e.g., Racino, 1999 to United Way, and then the Muslim Brotherhood and United Way fundraising competitors), 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 individual and family support, mixed income housing development, housing and user control, home ownership and natural supports approaches in the local communities (e.g., Bradley, Knoll & Agosta, 1992: Hagner, Snow & Klein, 2006; Ostroff & Racino, 1991). 

The Future: Competing Approaches to Direct Support

        According to the University of Minnesota's School of Education'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 in 2018 also highlights a father and his child 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 and education" sector on behavioral assistants and aides (See, Larson, et al, 2014 of UMN in Racino, 2014; Racino, 2000), and a hierarchy that includes MDs-psychiatry, Ph.Ds in community and clinical psychology, community and clinical social work, and new Ed.Ds ("generically educated") competing with physicians assistants (e.g., Scheffler & Kirby, 2003). The management and hierarchies are distinctly managed, and have distinctly different career tracks for workers and management, including increasingly in Health and Human Services Administration (Julie Ann Racino, HHSA Executive 2017-2018). 

      The ASPA university sector continues to have a high prevalence of  the traditional industrial complexes of criminal justice-public health-human services ("facility-based") (e.g., Racino, Rolandi, Huston & Bergman, 2017) with a new emphasis on homeland security post 911. Julie Ann Racino consulted with the Criminal Justice (e.g.,  Criminal Justice Review) and Public Administration and the Law Sections (e.g., Disability and the Law, e.g., Employment Law, Family Law) of ASPA beginning in 2015. 

        In particular, the distinctions made in the 1970s and 1980s compared the private and state sectors (thus the value of public servants, ASPA and the Public Sector Workforces, 2018), 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 at NeCopa, 2017) and reform of civil service, merit-based systems (e.g., Berry, 2000; Thompson, 2001; current, 2018). 

Workforces at the Legislature

       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,  have launched new state initiatives from Community Connections Career Partnership in Ohio, to the #beFair2DirectCare Campaign in New York. Liz Benjamin of Capitol Tonight reported on the NYS legislative developments, hosting panels on non-profit and governmental advocate initiatives in 2017-2018. At the Public Personnel Management levels, workforce diversity and inclusion (Choi, 2011; Guajardo, 2013) will continue as another governmental focus into the coming decade. 

Workforces in Mental Health

     Other workforces under this title were the original Community Support Services (CSS) of the National Institute of Mental Health (NIMH) which have roots in the field of rehabilitation and its expansion to mental health populations; the latter included services such as clubhouse programs as "psychosocial rehabilitation", intensive case management, to new models of consumer-directed services, community behavioral services, and supported housing (e.g., Blank, et al, 1996; Cuomo, M., 2014; Durbin et al, 1997; Racino, 2014; and Shen et al, 2008).  

     In addition, over 5.6 million adults over age 65 may be involved with substance use and mental health services before the reported mass overuse of "contraindicated drugs" in "nursing facilities" which are highly "aged and disabled". These "governmental" and "NGO" workforces in 2012 (e.g., National Institute on Medicine, 2012) were gearing up for new procedures that will include other secondary conditions such as diabetes and cardiovascular "diseases". In 2018, states and the federal government have invested "in all ages" regarding the opiod epidemic in America. 

Future Workforce Development

    ASPA (American Society for Public Administration) itself published a Special Issue in Spring 2018 on Workforce Management, presenting a New Vision for the Public Sector: Business Acumen, Innovation, Strategic Orientation, Leadership, Culture, Talent, and Technology based upon Human Resources Leadership. Human Capital Management and Strategic Planning and new Workforce Trends include: leaving the federal service prior to a tenth year anniversary, the new talent and Senior Executive recruitment, employee engagement, and the expected retirements leaving an extensive gap in workforce and institutional knowledge. 

      Further cuts through federal department consolidation (e.g., US Department of Education, and US Department of Labor to US Department of Education and Workforces) have been announced by the new "Republican Trump Administration" in 2018. The Centers for Medicaid and Medicare, "under President Barack Obama", hosted within Human Capital and EEO (2012), active workforce management groups which involve workforce compliance (also, new federal "stings" at health care in the community, 2017), person-centered services (at inclusion, equity and diversity, 2016), and social and behavioral services (at the White House Office of Science and Technology, 2016). These complement efforts at the US Senate (2013, LTC and LTSS) on the Long Term Services and Supports (LTSS), often the province of organizations such as Consortium of Citizens with Disabilities (2018). 

US Community Support Workforce: Health, Generic and Specialization Models in the Community

      In 2013, PCA (e.g., personal care, personal attendant or assistant, home health, certified nursing assistants) training standards for the 50 states, US workforce were also highly active (Kraus, 2013), complementing the Direct Support Professionals, Personal Support Specialists, Family Support Workers, Community Living Specialists, and dedicated Program Specialists (e.g., Day or Vocational Programs) (e.g., Bradley & Hierstein, 2015) . Julie Ann Racino served as national advisory to the California University Centers on Personal Assistance Services, and developed the "community support models" in intellectual and developmental disabilities through NIDRR. At ASPA, personnel generally are described as public and private sector personnel with the later achieving Nonprofit Governance, and the Business Sector (e.g., rise in CPAs in government; historic business to federal government) increasingly operating or outsourcing public sector governments. 

     Sherri Larson (2014) and her team at the University of Minnesota, a long time collaborator with Syracuse University's School of Education, proposed an online training and education model (College of Direct Support, generic base, 2018; Racino, 2000a) which includes competencies for aides specializing in:
*  aging and physical disabilities (e.g., Heumann & Racino, 1992);  
*  (social and) behavioral health of state governments (e.g., Racino, 2000b with Taylor, and Meyer-Voeltz, to "behavioral lifestyles", AR UAP, 1994), and 
*  intellectual and developmental disabilities (e.g., Racino with Taylor, Bersani, Shoultz, 2000b.) (See, Technical assistance model of Syracuse University-federal-university-state-local levels).

      These models based upon the original NYSACRA education of the 1980s (e.g., Racino & Schwartz of NY) still rely on continuing education (e.g., Missouri Association on Mental Retardation Keynote and PreConference on "Housing and Support", Racino, 1991) or other university/college departments for courses in budget and finance, housing and community development, and family studies. 
Sherri Larson and Amy Hewitt are part of the deinstitutionalization teams of Robert Bruininks and K. Charlie Lakin; Judith Heumann (and Steven E. Brown) worked for Ed Roberts, founder of Independent Living; and Steven J. Taylor, Henry J. Bersani, Jr., Bonnie Shoultz, and Julie Ann Racino are part of the deinstitutionalization teams of Burton Blatt and Douglas Biklen.

      US states offer public and private sector services daily to US citizens, and in the news today (June 2018), are the detention centers, migrants, and immigrant families which are based upon "civil servants" and "civil servant management" from health and human services, to specialized justice and immigration, and other departments such as education. US states are also active in the provision of new autism spectrum services, HIV-AIDS, and brain injury services in the community (e.g., Consortium of Citizens with Disabilities, 2012, 2018). More information is available in Public Administration and Disability: Community Services Administration (Racino, 2014) at http://www.crcpress.com/authors and more yet to come!

References
       American Association of Retired Persons. (2017). AARP Magazine and AARP Bulletin. Washington, DC: Author. 

      Berry, C.R. (2000). Developments in personnel/human resources management in state government. In J. J. Gargan, Handbook of State Government Administration. (pp. 177-219). NY, NY: Marcel Dekker,, Inc. 

      Blank, M., Jodl, K., McCall, B.R. (1996, Summer). Psychosocial rehabilitation program: characteristics in urban and rural areas. Psychosocial Rehabilitation Journal, 20(1): 3-10,

       Bogdan, R., Taylor, S., Grandpe, B. & Haunes, S. (1974). Let them eat programs: Attendants' perspectives and programming on state wards in state schools. Journal of Health and Social Behavior, 15: 142-151. 

       Bradley, V. & Hierstein, D. (2015, May 31). HSRI National Core Indicator Stability Survey. MA & OR: Human Services Research Institute. 

       Bradley, V., Knoll, J. & Agosta, J. (1992). Emerging in Family Support. Washington, DC: AAMR. 

      Campbell, S. (2018). Racial and gender disparities with the direct support workforces. The Direct Support Workforce and People with Intellectual, Developmental and other Disabilities. IMPACT, 31(1): 16-19. 

      Choi, S. (2011). Diversity and representation in the US federal government: Analysis of the trends of the federal employment. Public Personnel Management, 40.1: 1-25. 

      Conroy, J. & Bradley, V. (1985). The Pennhurst Longitudinal Study: A Report of Five Years of Research and Analysis. Philadelphia, PA: Temple University Developmental Disabilities Center. 

     Consortium of Citizens with Disabilities. (2012). Long Term Services and Supports Task Force. Washington, DC: Author. 

     Cuomo, M.C. (2014). HELP Model of Housing in New York (you tube). Albany, NY: NYS Association of Executives. 

     Durbin, J., Goering, P., Wasylenski, D., & Roth, J. (1997, Winter). Who gets how much of what?: A description of intensive case management. Psychosocial Rehabilitation Journal, 20(3): 49-56. 

     Garrett, K. & Shields, W.J. (Spring 2018). Workforce Management. PA Times, 4(1): 1-37. Washington, DC: ASPA. 

      Guajardo, S.A. (2013). Workforce diversity: An application of diversity and integration indices to small agencies. Public Personnel Management, 42.1: 1-27. 

       Hagner, D., Snow, J., & Klein, J. (2006). Meaning of homeownership for individuals with developmental disabilities. Mental Retardation, 44; 295-303. 

       Heumann, J. & Racino, J. (1992). Independent living and community life: Building coalitions among elders, people with disabilities, and our allies. In E.F. Ansello & N.N. Eustis (Eds.), Aging and Disabilities: Seeking Common Ground. Amityville, NY: Baywood Publishing Co., (pp. 79-90). 

      Hewitt, A., MacBeth, J., Merrill, B., & Kleist, B. (2018, Winter/Spring). Feature Issue: The Direct Support Workforce and People with Intellectual and Developmental and Other Disabilities. IMPACT, 31(1): 1-52.

      Kaiser, A. & McWhorter, C. (1990). Preparing Personnel to Work with Severe Disabilities. Baltimore, MD; Paul H. Brookes. 

      Kearney, R. (2009). Ch. 11: Public employee union of the future.  Labor Relations in the Public Sector (4th Edition). London, Boca Raton, FL,  and NY, NY: CRC Press, Francis and Taylor. 

      Kraus, L. (2013, January 22). PCA Training Standards: Findings from a 50 State Study. San Francisco, CA: University of California.

      Larson, S.,A., Sedlezky, L., Hewitt, A., & Blakeway, C. (2014). Community Support Services Workforce in the US. In J. Racino (Ed.), Public Administration and Disability: Community Services Administration in the US. London, UK and NY, NY: CRC Press. 

     National Institute of Medicine. (2012). The Mental Health and Substance Abuse Workforce for Older Adults. In Whose Hands? Washington, DC: National Institute on Medicine. 

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     Racino, J. (1999). Policy, Program Evaluation and Research in Disability. Binghamton, NY and London: Haworth Press. 

     Racino, J. (2000a). Personnel Preparation in Disability and Community Life. Springfield, IL: Charles C.Thomas Publishers. 

     Racino, J. (2000b). Technical assistance and systems change: The roles of universities and colleges in field training. In J. Racino, Personnel Preparation in Disability and Community Life.  (pp.167-186). Springfield, IL: Charles C. Thomas. 

     Racino, J.A. (2014). Family Support, Family Studies and Community Services. In: J. A. Racino, Public Administration and Disability: Community Services Administration in the US. (pp.  101-122). London, Boca Raton, FL, & NY, NY: CRC Press, Francis and Taylor.

     Racino, J.A. (2015, March). Increase in Health Care Financing in the Community in the 21st Century. Local Governance Panel: W. Rivenbark and J.A. Racino. Chicago, Illinois: American Society for Public Administration. 

     Racino, J., Rolandi, S., Huston, A., & Bergman, A. (2017). Expanding Community Integration Theories to Inclusion, Equity and Sustainability. ASPA Panel Presentation Endorsed by Public Administration Theories. Atlanta, GA: American Society for Public Administration. 

     Racino, J. (2017, November). The State of the Sciences on Deinstitutionalization in the 21st Century. Panel Moderator: Robert Bartlett. Burlington, VT: Northeast Conference on Public Administration. 

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New Addition: Feature Issue on Supporting New Career Paths for People with Intellectual and Developmental Disabilities (Winter/Spring 2012). IMPACT, 25(1), 1-27. 
To: People with Disabilities in America's Workforce (Derek Nord) as ID/DD has not typically been represented in technology, health care, scientific and green jobs. 

     Julie Ann Racino (ASPA, HHSA, 2019) indicates that "government, NGO and private workforces in the US" include personnel with substance abuse and mental health histories (e.g., anxiety disorder), individuals who have physical disabilities or medical needs (includes quadraplegia), persons with traumatic or acquired brain injury, active users of rehabilitation (and special education) services, individuals with temporary or chronic illnesses (e.g., back injuries, cancer), autism and related disorders, parents with children with disabilities, HIV-AIDS, persons with sensory impairments (e.g., blindness, hearing), and the full range termed "developmental disabilities" (e.g., epilepsy, cerebral palsy). 

     Individuals may be in designated positions by law, in the open workforce, in specially designed jobs (e.g., job sharing), in "individual placements", or in protected employment programs (e.g., supported employment, transitional employment). Now, the change in the human resource departments at corporate levels (Racino, 2014 at Public Administration and Disability: Community Services Administration in US http://www.crcpress.com) reflects the range of government-related programs, including post-prison release, wellness programs, discrimination and former affirmative action programs, and post-court, parental and children programs.


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