Contemporary "Cash for Care" Debates
By Julie Ann Racino, October 17, 2015
State of New York, USA
In 2013, in conjunction with the new release of Public Administration and Disability: Community Services Administration in the US (Racino, 2014) at http://www.crcpress.com/9781466579811, the PA Times published an article on consumer-directed financing. The article is titled From Facilities to Homes: The Rise in Individualized Funding and Consumer-Contolled Budgets at http://patimes.org/facilities-homes-rise-individualized-funding-consumer
Significant Articles and Initiatives
In the mid-1980s, in the USA, family support and its cash subsidy programs were expanded and reported today by the National Council on Disability (2005) and Braddock's State of the States in Intellectual and Developmental Disabilities (Braddock et al, 2015). In 1989, Dr. Steven J. Taylor of Syracuse University of New York State and now Dr. John Agosta of the Human Research Institute in Oregon, began to academically discuss the family support services which could be a critical aspect of community living and deinstitutionalization. Today, wikipedia (2015) describes the diverse families that can or may already benefit from family cash subsidies or support services in the community.
In contrast, the World Institute on Disability, funded at the same time in the field of disability for Personal Assistance Services and Independent Living, proposed national and international "user-directed services and funding" (WID, 1991 with Ed Roberts, Judith Heumann, Steve Brown, Hale Zukas, Simi Litvak, California). Such funding was already successful in their independent living center network which included at least one center in each US state and significant programs such as that begun by Adolph Ratzka of Sweden. These initiatives were also significant as US studies conducted with the National Institute on Disability Research and Rehabilitation (NIDRR), then US Department of Education.
Braddock, D. , Hemp, R., et al. (2015). The State of the States in Intellectual and Developmental Disabilities: Emerging from the Great Recession: Tenth Edition. Washington, American Association of Intellectual and Developmental Disabilities.
National Council on Disability. (2005). The State of 21st Century Long-Term Services and Supports: Financing and Systems Reform for Americans with Disabilities. Washington, DC: Author.
Racino, J. (2014). Public Administration and Disability: Community Services Administration in the US. Boca Raton, FL: CRC Press, Francis and Taylor.
World Institute on Disability. (1991). Personal Assistance Services: A Guide to Policy and Action. Oakland, CA: Author.
Field Transfers and New Government Initiatives
In the university-governmental sectors, the concept of consumer-controlled budgets and personal budgets (e.g., Moseley, Gettings, & Cooper, 2010), sometimes termed individualized funding, gained ascendancy in the intellectual disability and mental health fields. Of course, in the US, one continually in any "cognitive disability fields" (Litvak & Racino, 1993) needed to investigate who the consumer was, the parent, the guardian, the surrogate, or the "client" (service user) and what the budget was for or covered - wide ranges (e.g., Tamara Heller as reported in Racino, 2014).
Original US demonstrations on cash subsidies with families involved small amounts of funds (Racino, 1991 with notable provider delivery concerns), and nation-states such as Australia reported these amounts (Rillotta, et al, in 2012) at individual and family support. Canada's John Lord and Peggy Hutchinson (2003) relatively early on discussed the US initiatives in a relatively homogeneous US state pairing the self-determination concept with individual budgeting and projects in Australia and Canada. In the UK, an annual personal budget survey with consumer satisfaction was in place in 2011 (Hatton & Waters, 2011) and is available online.
Hatton, C. & Waters, J. (2011). The National Personal Budget Survey. London: InControl and Lancaster University Centre for Disability Research.
Moseley, C., Gettings, R., & Cooper, R. (2010). Having It Your Way: Understanding State Individual Budgeting Strategies. Washington, DC: National Association of State Directors of Developmental Disabilities Services.
Racino, J. (2014). Public and individual budgeting and financing. Public Administration and Disability: Community Services Administration in the US. NY, NY and London: CRC Press.
Stancliffe, R. J. & Lakin, K.C. (2005). Costs and Outcomes of Community Services for People with Intellectual Disabilities. Baltimore, MD: Paul H. Brookes.
International Social Policy Report on Cash for Care
Clare Ungerson (University of Kent, Social Policy) of the United Kingdom and Sue Yeandle (University of Leeds, Sociology) assembled a key policy group on cash for care from the countries of the Netherlands, Austria, France, England, Germany, Italy, and the USA (2007). This group specifically examines care for older people, including for the age over 85 which might involve approximately 20% who need paid care; disability allowances and long term care allowances and long term care insurance in the countries are also discussed.
The USA report (Sharon M. Keigher, 2007) concentrates on California's In-Home Supportive Services, Arkansas' Independent Choice Program (cash and counseling demonstration), consumer-directed care and care workers (e.g., health and benefit needs), and the direct payment and consumer-directed concept of "routed wages". The federal level is at the Bush Administration's New Freedom Initiatives (e.g., Money Follows the Person) and the use of Medicaid in the community.
The book is significant in that it discusses the market economy and the commidification of care with country decisions affecting whether or not 24/7 care will be provided, who and under what conditions carers or users can receive funds, basic change in nature of formal and informal care, use of undocumented 'grey' labour and conditions of the labour force, governmental benefits and its forms and payment schemes, and the effect on employment in the "social services sector".
As discussed in the chapter on Germany (Schneider & Reys, 2007, p.151), "public procurement of long term care services on behalf of those who claim in-kind benefits creates a direct link between program expenditure and demand for care professionals". The Dutch care allowance (personal budget) for nursing and care which was started in 1991 was reviewed for its positive results of user satisfaction and arranging care to meet their needs in the context of neo-liberal cost containment (Pijl & Ramakers, 2007, pp. 81-82).
France reports that 94% of home care packages are used to pay for home help services (average 489 euros per month) (Martin & Le Bihan, 2007, p. 45), and Italians cite the indennit`a (average 437 euros per month in 2004) as the cornerstone of "Italian public policy for frail older people" (Gori & Da Roit, 2007, p. 63). The Royal Commission on Long-Term Care, as early as 1997-9 indicated the anticipated rise in volume of home care and demand for home care workers providing 25 hours of care per week (Yeandle & Stiell, 2007, p.109).
The book is the best so far on "government program and budget institutionalization" of personal budgets and consumer-directed care, elders or disability. However, it is critical to know that recent budget reviews indicate new health agendas by governments worldwide and reviews, and new managerial systems of health care. Highly recommended, as are the books on consumer-controlled budgets and community services (e.g., Stancliffe & Lakin, 2005; Racino, 2014), excellent articles (e.g., Australian case study with state of Wisconsin from the US), and the new Long-Term Care Commisions in the US (2013).
Laragy, C. & Ottman, G. (2011, March 9). Towards a framework for implementing individual funding based on an Australian case study. Journal of Policy and Practice in Intellectual Disabilities, 8(1): 18-27.
Ungerson, C. & Yeandle, S. (2007). Cash for Care in Developed Welfare States. NY, NY: Palgrave MacMillan.
- Cash for Care in the French Welfare State: A Skillful Compromise? (Martin & Le Bihan)
- The Commodification of Care - the Italian Way (Gori & De Roit)
- Contracting One's Family Members : The Dutch Care Allowance (Pijl & Ramakers)
- Issues in the Development of the Direct Payment Scheme for Older People in England (Yeandle & Stiell)
- Mixed Blessings: Long-Term Care Benefits in Germany (Schneider & Reyes)
-Consumer-Direction in an "Ownership Society": An Emerging Paradigm of Home and Community Care in the United States (Keigher)
Additional Information Forthcoming. Contact: Julie Ann Racino, Community and Policy Studies, 208 Henry Stret, Rome, NY 13440-6506 USA.
Thank you to Gary Smith (Colorado, Oregon), now deceased and then with Robert Gettings at the National Association of State "Mental Retardation" Program Directors, for his lifelong work on the development of community services, including significant work on the Home and Community-Based Medicaid Services Waivers "for the United States of America". Loved co-presenting with him on the status of the waivers in the US (yes, supported employment and long term services and supports, and yes, supportive living) at the national waiver conference way back about 1988 or so! Gary Smith was also on legal cases on community services at the time of his early passing and on family support services for the US. Julie Ann Racino about.me/julieannracino
ReplyDeleteThe Developments in Direct Payments book describes the work decades later related to the US Center on Personal Assistance Services, one of our first Rehabilitation Research Centers on Families and Community Living (Lakin & Racino, 1990). The World Institute on Disability began academically and "in real life" the concept of "user-directed services" which is so popular in the US that the federal government's US Center for Medicaid and Medicare (earlier the enforcement, Health Care Financing Agency) now has a "user-directed" option. Having international links and scientific distribution, the history of its development "should be" easily traceable; luckily, the founding class of the Centers is active in 2015. about.me/julieannracino
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Welcome to my blog site! Australian students, indeed, were at the Syracuse University Center when it was funded in 1985 as the Rehabilitation Research and Training Center on Community Integration. I was delighted to fly to San Francisco on a research study, and also meet with now Honorable Judith Heumann who became international disability advisor to President Barack Obama. Regretfully, Ed Roberts has since passed though you will find the campus named after him at the University of California at Berkeley. This author's work is related to the classes of "cognitive disabilities" which are a professional class requiring involvement of a different community workforce, now known in part as the US Direct Support Professional Workforce and in both the private and governmental sectors. The materials distributed for public use and professional elducation were paid for by the US government and secondarily, "donations" of time and effort by the professional class involved.
DeleteI recently came accross your blog and have been reading along. I thought I would leave my first comment. I dont know what to say except that I have enjoyed reading. Nice blog. I will keep visiting this blog very often.
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Sarah Edwards. The blogspot was recently open to the public and I'm delighted that you found it from Texas. As a day care provider, I trust you are familiar with many "integrated day care options" from respite (also in Great Britain), child care, early intervention and early childhood programs which benefit children "who may be delayed". The program in Syracuse you may wish to speak with is Jowonio (Ellen Barnes, founding director) and it is located across from the Nottingham High School and affiliated with Syracuse University, inclusive education. Syracuse University prepares teachers and administrators; "my alma mater" Cornell University specializes in family development (at the School of Human Ecology). Julie Ann Racino about.me/julieannracino
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ReplyDeleteWelcome American Society for Public Administration to the new blogspot. The book, Public Administration and Disability: Community Services Administraitn in the US (Racino, 2014)has a chapter available for pay per view at http://www.crcpress.com/9781466579811
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Dear Moor Williams: I am generally delighted in our region in New York with the urgent care centers versus the use of the hospital emergency rooms, theoretically saving health care funds for all. In particular, the urgent care centers both known when to refer to the hospital, and have a reasonable waiting time to obtain care for anything from a sprained ankle to a bad case of the flu. At this time, like many place our region is beginning to pursue electronic records (e.g., Maxwell School presentation in 2012 on the state of Ohio), and concerns about the accuracy of those records have been magnified as centralization also will be occurring. Good to meet all of you! I also attended Northwestern University Medical School way back in 1977 or so which, for example, had a high-risk neonatal unit (one of 3 for the city of Chicago, Illinois) and the testing of hospital day care for "dementia" (often termed Alzheimer's) prior to the decades of the brain (BA, psychology, genetics and the mapping of the DNA strands which had not yet been done in 1970s)! You may find the CRC Press books helpful at: http://www.crcpress.com/authors, and my new can be searched by my name, too. Julie Ann Racino
DeleteLarry Smith: Great to meet a IT Consultant, and appreciate the designers of this blogspot and the social media associated with Deluxe (which hosts small business seminars) and M&T Bank. University departments also associate (or not) with IT departments, and I am involved with US nation science centers in rehabilitation which could benefit from the skills of your fields. I was involved in the early cash subsidy programs in the US and was a supporter from the early research in community of a user-directed approach instead of what was termed a facility-based approach that was instituion to community transfer. It's a current struggle yet today with often inadeuqate funds for home care or for family caregivers, while the funds are available for a 100 bed nursing facilty. Cash for care reflects decades of combining these approaches into systems "for both those who are elders and/or with a disability"; as young community services, it may take time for these health and human services to mature and develop. The user-directed federal option is on the site - US Centers for Medicaid and Medicare, and University of Minnesota has a College of Direct Support (online courses). The national plan still needing development is called Long Term Services and Support (LTSS). Julie Ann Racino, Google Plus and Twitter
ReplyDeleteCash for Care Schemes are related to another critical concept called Income Security and Income Support (Racino, 2015). However, prominent in the 1980s literature are Child Support Enforcement Laws, to maintain the child's standard of living, usually based upon the living standards of the "father" (Kamerman & Kahn, 1988). This approach can involve jailing the "father" if he does not have a job or adequate income since child support payments also could not be discharged in bankruptcy (Ibid, 1988, p.268). Child support is international (e.g. Austria,Denmark, Netherlands,Isreal, England) and is codified in law, with wage collection the most popular form of collection payments at intergovernmental collection gates. The programs for "single mothers", often termed "female-headed households" typically involve marriages and divorce, policies on mothers and working, and standardized "federal participation rates", among others. While these programs have changed substantially in 2015, the policies (and philosophy) behind these programs often are not explicit to the public (thus not open to professional or public debate)and like other areas, may be decades behind in thinking. Julie Ann Racino 2015
ReplyDeleteIncome maintenance and the "social risks" were studied internationally in the 1980s in the new field of social work led by Columbia University. The reported cluster of risks were: old age, retirement, death of a bread winner, maternity and disability (covered under insurance schemes). New in the 1980s were already excessive housing costs, separation/divorce and the related need of child support, long-term unemployment and rearing a child (Kahn & Kamerman, 1983, p. 317). The goal was to have governments recognize and address these risks; however, including some schemes, such as broad housing allowances in Europe, and not others, like housing subsidies in America which were not as broad-based. To a reader, the "attitudes" about families and resonsibilities are core to what later occurs in America and other countries. Why? Because support to families does involve areas such as a family allowance or housing allowance, income tax deductions, or benefits to low income families (i.e., child's standard of living). Many of these programs were based upon concepts of the rights of children, not of concepts of all family members. Several of these books also indicate that there was a trend against joint custody, and no indication of any efforts to support or preserve families. Julie Ann Racino about.me/julieannracino
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ReplyDeleteDavid Braddock credits the support of the National Asociation of Developmental Disabilties Services, then Director Nancy Thaler and Associate Director Charles Moseley; Peter Berns of the Arc-US (on facebook today) and Ann Cameron-Williams, Chief Research and Innovations Officer, and the American Association on Intelletual and Developmental Disabilities led by Margaret Nygren (with Amy Hewitt) in 2015. In 1985 when we were collaborating on the survey, Alan Abeson was Arc-US Director and a subcontractor of our Center at Syracuse University, and Bob Gettings served in the NASDDDS Executive role with the 1990 book indicating Gary Smith's work on developing and revieiwng the state profiles in the third national study of public then mental retardation and developmental disabilties spending. Affiliated universities, Rehabiltation Research and Training Center on Community Integration (Syracuse University, Center on Human Policy), and the Rehabilitation Research and Training Center on Community Living (University of Minnesota) with funding through the National Institute on Disability Research and Rehabilitation. Martha King in 2015 is still with the National Conference on State Legislatures and was involved in one of the best public policy summaries in brain injury for decades. David Braddock remains affiliated with the University of Illinois at Chicago and the Human Development's professors Mary Rizzolo (his lead on family support statistics in US; see also US statistics at the University of Minnesota), Glenn Fujiura (whom I spoke with last year), Tamara Heller (new federal funds), and Tia Nelis (self-advocacy).
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