Family support

Family support is the support of families with a member with a disability, which may include a child, an adult or even the parent in the family. In the United States, family support includes "unpaid" or "informal" support by neighbors, families and friends, "paid services" through specialist agencies providing an array of services termed "family support services", school or parent services for special needs such as respite care, specialized child care or peer companions, or cash subsidies, tax deductions or other financial subsidies. Family support has been extended to different population groups in the US and worldwide. Family support services is currently a "community services and funding" stream in New York and the US which has had variable "application" based on disability group, administrating agency, and even, regulatory and legislative intent.

History

The late 1970s and early 1980s are considered pivotal times for the development of respite and family support services, particularly through the demands and initiatives of parents of children with disabilities.[1][2][3][4] These initiatives occurred throughout the US concurrent with the formation of activist parent groups in the 1970s, for example, in the state of New Hampshire.[5][6] Foster care, which involved "substitute care" from birth families, preceded this organization of parents nationally and together with group homes were considered the primary forms of community residential services in the US.[7][8][9][10] However, by the 1990s, family support had become an established service reported regularly in the field of intellectual and developmental disabilities, and part of States' and local service systems in the US.[6][11][12] Family support services were considered one of the better ways of supporting families and their children, including "building on natural supports" and encouraging the integration of children in the community.[13][14][15][16]

Family models and services

By the early 1980s, states such as New York had established family support programs and agencies, New York State Office of Mental Retardation and Developmental Disabilities, and "model programs"[17][18] were identified nationally which served children and their families in the community (e.g., MacComb-Oakland, Michigan, Dane, LaCrosse, and Columbia counties, Wisconsin).[19] New models of family support services were initiated, including professional models which involved both traditional respite for the families (i.e., opportunity for a break from the stress of caring for children with "special needs") and individual recreation opportunities in generic agencies/sites for the son or daughter (versus traditional in-home babysitting/child care).[20] Professional parents sought to have respite places available in group homes (e.g., friend of the home), to develop small group respite settings, to hold parent-to-parent support groups and meetings, to establish councils, and to have cash subsidies to meet the extra expenses of raising a "disabled child" (e.g., Exceptional Family Resources, Syracuse, New York, 1985). By 1983, the State of New York had funded three major demonstration grants[21] and then Governor Mario Cuomo and his wife Matilda held the first Family Support Conference in the Albany, New York.[22] New York State indeed by 1988 reported $16,536,000 in discrete family support initiatives[23] which did not include new agency family/cash subsidy demonstrations funded later in 1989-1990 in the state.[24] or agency cash subsidies included as part of family support demonstration programs (e.g., recreation/respite in generic agencies).[25] In the public policy arena, respite was often explored in the context of child care for children with disabilities,[26][27] and additional expenses of raising a child with a disability as especially critical in low income families.[28][29]

Promotion on behalf of families

In 1985, Syracuse University's Center on Human Policy was awarded a three-year Community Integration Project from the Federal Government (National Institute on Disability Research and Rehabilitation) to work with states and communities in the US. The project, based on a national search conducted by the Wisconsin Developmental Disabilities Council, identified state cash subsidy programs in 21 states in the US.[30] The project, together with a new national Center on Community Integration, prepared information on family support for distribution, including a news bulletin on family support based on the project's research studies,[31] an article on the case for family support for families,[32] bibliographic references,[33][34][35][36][37] innovative agencies and organizations,[3] and an introduction to family support issues, such as family-centered supports, individualized and flexible supports, empowering families, use of natural, community supports, and permanency planning.[38]

Basis in theories

Family support is based in part on theories related to families, particularly family systems theory, ecological and support theories, community support theories, life-span and life course theories, family psycho-social theories, family empowerment theory, the work-home resources model, and positivistic theories, such as the sociology of acceptance.[39][40][41][42][43][22][44][45][46][47][48][49] In relation to services, basic policy concepts have included family-centeredness, capacity-based services, empowerment and participatory decision making, individualized (and appropriate) services, among others.[50] Between the 1970s and 1990s, family support was developed in the context of community integration,[51] building on the quarter century work on physical and social integration of families and their children.[52][53][54] It differs from other models of family support developed in the context of employment programs, housing programs, nutrition, transportation, health care, or city emergency programs. These included: the Family Support Services of West Hawaii (including community and economic development activities), Family Support Services of Amarillo (including employee assistance and family therapy), Family Support Services of Southeastern Pennsylvania (e.g., child welfare and early intervention), City of Chicago Family and Support Services (e.g., domestic violence, senior services).(brief web review, 2011).

Growth in the US

By the 1990s, family support had gained in great popularity in the field of intellectual disabilities, especially since 80-90% of children with disabilities continue to live with their families even today.[55] Yet, the Human Services Research Institute determined that only 1.5% of the state budgets for developmental disabilities services was used to support these families as at 1990.[56] By 2006, family support spending was reported to be $2,305,149,428 in the US,[57] yet, in FY 2006, it remained at only 5% of total intellectual and developmental disabilities spending of $43.84 billion.[58] In the US, the costs of "family care" in intellectual and developmental disabilities have been studied, including direct financial costs met by families, indirect and opportunity costs, and indirect psychological costs.[59]

In related fields, though, family support is still often considered to be "unpaid", "voluntary support" by family members, family-to-family training programs, self-help groups, often near forms of family interventions by professionals (e.g., behavioral training, clinical assessments, vocational training, family therapy, clinical community re-entry) in traumatic brain injury.[60] and in adult mental health.[61] In children's mental health, family support and advocacy organizations are viewed to be increasing at the systems and policy levels, with the late 1980s formation of the Federation of Families for Children's Mental Health[62] and the reformation of the National Alliance on Mental Illness, a strong parent organization from the late 1970s (see, also Wikipedia). Family support services today are viewed as important for families with individuals with diverse disabilities (e.g., motor-neuron disease, AIDS, epilepsy, cerebral palsy, autism)with a greater emphasis on choice in support services (e.g., counseling, training and information, respite).[63]

As a parent-professional field

As family support would be considered a parent-professional field, the research studies documented diverse disabilities (e.g., epilepsy, sickle cell anemia, hearing/visual impairment, spina bifida, cancer, learning disability), household incomes, level of assistance by daily living activities, behavioral and medical needs, insurance coverage, daily routines, impact of disability on the household, services for specialized needs, and so forth.[64] The field then was challenged in the 1990s to broaden approaches to families, including gendered caring,[65][66] inner-city population groups,[67] rural areas of the country,[68] a "whatever it takes approach",[69] and over-professionalized approaches to people's homes.[70] This was followed by a national research study on these organizations supporting families in the community and those supporting adults with disabilities to live in their own homes.,[71] two major national and international comprehensive reform efforts in community living. Baltimore, MD: Paul H. Brookes.[17] In addition, governmental policy today appears to continue to encourage adults with disabilities to live at home with parents or caregivers (2011); thus, family support funds are usually designated for families with children and adults living at home, including in families with aging parents. However, family supports are also integral to adoptive and foster families and may take the form of in-home aides or home assistance, provision of equipment, respite and home adaptations, and shared care options between birth and foster parents/families.[72]

As a caregiving model

In line with the parent-professional partnerships of the 1980s and 1990s, the Oregon Research Institute published a book on Support for caregiving families.[73] The book included the progressive professional stances on family stress and support (for critique, see Racino & Heumann, on children as a "burden"),[74][75] value-based services based on the Center on Human Policy's statement in support for children and their families (1987),[76] role of parents in quality services,[77][78][79] coping skills (often addressed by behavioral or skills training),[80] human development and informal support,[81] and family life cycles, including infants and early intervention, school-aged children (school programs), transition to adulthood (and supported employment), and ecobehavioral/clinical treatment of families (stronger in fields such as mental health), among others.[73] Family support and aging, a major concern in 2000s due to the aging population in the US, was also the focus of service reform in the 1990s. For example, 700,000 people with developmental disabilities live with one or more parent over the age of 65.[82]

As a model of community services

As deinstitutionalization policies in the US moved toward the development of community services,[83][84] community parents also became more interested in "out-of-home placements" (e.g., small group homes) of their children (e.g., children moving from the parental home and beginning adult lives).[85] This approach is valued internationally as one way of adult's attaining adult status, especially in Western countries.[86][87] In states like New York and Connecticut, this resulted in tension between "institutional" and "community parents" vying for limited public funds, and between providers of services for funding (e.g., state institutions and private, non-profit community sectors). However, as states began to close institutions, funding was often available primarily to relocate those individuals living in institutional care or those at risk of institutionalization (e.g., home and community-based Medicaid waiver, HCBS).[88][89] For example, "15 states financed 90% or more of their family support services with Medicaid HCBS; 11 states financed their family support activities through state funding.[58] Since family supports were recommended for children, options such as foster care (new models for adults and children)often included family support services, families on waiting lists were offered family support services, and a broader range of types of services were developed in different states (e.g., Wisconsin's menu of services).[90][91][92]

New and traditional population groups

In the 2000s, "new population groups" in family support, as part of family support theories in the US and worldwide, included:

  • multicultural and transnational families,
  • families which include a member who is gay, lesbian, transsexual or bisexual,
  • youth with disabilities,
  • aging population in the US,
  • youth in mental health,
  • families with a member with a brain injury, and
  • parents with intellectual and other disabilities, among others.

Adolescent mothers and single parent families

Traditional groups known to be at-risk of adolescent mothers were sometimes involved in social support and adolescent theories, as part of adolescent pregnancies and mothering research.[93] At-risk families in intellectual disabilities also may be single mothers and early recommendations were for additional support options such as boarding nearby to family, modifying apartment programs to allow children, and increasing family support services in private homes. Critical are personal and family values, empowerment of families and home visitors, parent-child activities, and cluster groups (e.g., neighborhood improvement, natural child birth groups, toddler play groups, team group support), among others (e.g., Cochran, et al., 1984).[94]

Multicultural and transnational families

In addition, the needs of multicultural families, based on changing US demographics, also resulted in greater attention to the major minority groups, including African-Americans, Asian Americans, native Indian Americans, and Hispanic/Latino Americans.[95][96][97][98][99][100] Original approaches involved services to Native Americans on reservations (often poverty) or as "assimilation into white society"[101] in contrast to approaches involving housing integration of "diverse populations" (e.g., Asian Americans) in mixed-income housing in small cities.[102] Today (2012), the American Indians, for example, own and operate casino gambling in the US and obtain funds toward their own social services.[103] In addition, new transnational families, who may be separated from their families by international migration, form part of the new face of families in the US[104] as does the gay, lesbian, bisexual, and transgender activist populations.[105]

Youth with disabilities

Youth with disabilities became an emerging "age group"[106] in the late 1980s and 1990s as family approaches (often-parent-based) competed with approaches based more on the desires of youth with disabilities. For example, personal assistance approaches based on diverse lifestyles and hiring of aides by service users became a popular way of thinking about services.[107][108] In addition, major federal initiatives in transition planning in the US resulted in a variety of approaches to moving from child-centered to adult services, based in part, upon theories of adolescent development.[109][110][111] Today, self-advocacy has grown worldwide and youth, in particular, have sought their own voices and futures.[112][113]

Aging population
Main article: Population ageing

The changing demographics of aging in the US have been well documented in diverse fields[114] with its public facing the need to revamp the nation's Social Security system.[115] The latter can no longer, as developed in the Depression Era, financially support the growing aging population which outstrips the younger generation paying into the system. For example, "between 2010 and 2030, the number of people aged 65 and older is projected to increase by 76%, while the number of workers supporting the system is projected to increase by 8%".[116] The elder population also is living longer, expected to have a marked increase in the people living over the age of 80,[117] involving an increase in "disabilities" such as dementia (e.g., Public Broadcasting, 2011), effecting social security disability benefits,[118] and also the discovery of older adults with lifelong disabilities in "community-dwelling" two generation families.[119]

Youth, children and adults in mental health

Instead of family support in the field of mental health, parent organizations have formed state and national chapters independent of their children (e.g., National Alliance for the Mentally Ill).[120] In addition, community agencies often have developed parent education programs (which remains as a government-funded program in the US), and family therapists and counselors (often in private practice) tend to work with the whole family. Personal assistance and independent living approaches tend to begin with the desires and wishes of the youth or adult, and less often, the children; these approaches in mental health still remain relatively uncommon though psychosocial approaches have some similarity.[121] While housing and support and employment supports have been transferred across fields, greater reluctance exists in the field of mental health for "family support" (often starting with parental concerns) who often bill the parents as secondary service recipients.

In psychiatric rehabilitation, "families are a major resource impacting rehabilitation outcome" (families as allies) with 50-60% returning home from hospitals in US (Anthony, et al., 2002, p. 185). Extended families are viewed as critical worldwide, and many approaches are categorized as "family management" (e.g., information, treatments, family management), family interventions or "psychoeducational" (Ibid, 2002).[122] However, leading national research centers in the US examined state service systems and recommended prevention and family support for children in mental health and their families.[123] Such "ecologically-grounded models" which are expected to improve or "mediate child and parent outcomes" have often been the first targeted in difficult economic times; the "full fledged family support movement" of community-based agencies was reported in 1992 as "struggling to operationalize a new set of services and a new way of doing business with families".[124]

Parents with intellectual disabilities

By the 2000s, internationally, the support of parents who themselves have intellectual disabilities moved to new prominence with extensive, multi-decade research[125][126][127] after initial programs and studies in the US as early as the late 1980s and 1990s.[128][129][130][131][132][133] In addition, traditional parent training programs moved to community building[134] and parents/mothers with physical disabilities also prominently advocated for better lifestyles for themselves and their children,[135][136] included as part of a new US National Resource Center for Parents with Disabilities. (April 1998). Through the Looking Glass administered the 5 year center on behalf of the "8 million American families in which one or both parents has a disability."[137]

Families with a member with a brain injury

In 2015, partially as a result of the Iraq and Afghanistan wars, veterans are returning home with head and brain injuries, and then return from hospital and rehabilitation to spouse and family. Common may be a referral to a support group for the spouse or caregiver who may experience "caregiver stress" and "burden of care",[138] the result of inadequate community services in homes and for families. In addition, brain or head injuries can be caused by vehicular accidents, sports injuries, falls or accidents, war and terrorism, and related medical conditions (e.g., brain tumor, stroke). Family support in these fields often refers to support groups or direct support from the family and neighbors to the individual with the brain injury, or the rehabilitation or hospital program as the family support.[139]

US policy goals

In the National Goals and Research for People with Intellectual and Developmental Disabilities,[140] support of families and family life across the lifespan was considered one of the major goals of the extensive work group of leaders in that field (e.g., Ann Turnbull, Rud Turnbull, John Agosta, Elizabeth Erwin, Glenn Fujuira, George Singer, and Leslie Sodak, among others).[141] The overarching goal was: To support the caregiving efforts and enhance the quality of life of all families so that families will remain the core unit of American society. The five subgoals include:

  • Goal A: To ensure family-professional partnerships in research, policy-making, and the planning and delivery of supports and services so that families control their own destinies with due regard to the autonomy of adult family members with disabilities to control their own lives.
  • Goal B: To ensure that families fully participate in communities of their choice through comprehensive, inclusive, neighborhood-based, and culturally responsive supports and services.
  • Goal C: To ensure that services and supports for all families are available, accessible, appropriate, affordable and accountable.
  • Goal D: To ensure that sufficient public and private funding will be available to implement these goals and that all families will participate in directing the use of public funds authorized and appropriated for their benefits.
  • Goal E: To ensure that families and professionals have full access to state-of-the-art knowledge and best practices and that they will collaborate in using knowledge and practices. (p. 221).

Such efforts are critical as the US has often been criticized for having a lack of a coherent family policy for all its people (e.g., health care, housing, employment, leisure, community and economic development).[142][143]

International

Family support is indeed an international initiative with 1994 the International Year of the Family as proclaimed by the United Nations. Helle Mittler, from Great Britain, reported on the TASK Force of the International League of Societies for Persons with Mental Handicap which highlighted Face to Face in the United Kingdom, Young Muslim Women's Association Comprehensive Programme in Jordan, Service Brokerage in Canada, Swasahaya Sumachaya, Mysore, and Karnataka Parents' Association in India, Market Place Support Group in Côte d'Ivoire, Africa, Brothers and Sisters Groups in Nicaragua and India, Fathers' group in the United Kingdom, and Parents and Professionals Learning Together in Bangladesh and Pakistan.[144]

In 2012, the international community is on individual and family life quality,[145] family support is a long term services and supports (LTSS) in the US in communities[58] and a new chapter, "Family theories, family support and family studies" will be released in 2014.[146]

Resources on Families and Family Support
  • Beach Center on Families and Disability
  • Center on Human Policy, Syracuse University
  • Human Services Research Institute, Oregon and Massachusetts
  • Administration on Children and Families, Washington, DC
  • Arc-US and local Chapters
  • Exceptional Family Resources, Syracuse, New York
  • National Institute on Disability Rehabilitation Research(NIDRR), US Department of Education
  • PACER, state of Minnesota, Parents of Children with Emotional and Behavioral Needs
  • United Cerebral Palsy-US and local Chapters
  • Urie Bronfenbrenner Translational Center, Cornell University
  • New York State Association of Community Residence Administrators, Family Support Programs
  • Portland, Oregon Research Center on Children with Emotional and Behavioral Needs
  • Early Intervention Programs, NYS Department of Public Health
  • Neighborhood, Family and Community Centers
  • Community and Policy Studies, Family courses, http://communityandpolicystudies.blogspot.com
  • Rehabilitation Research and Training Center Networks
  • State Centers on Excellence in Disabilities
  • American Association on Intellectual and Developmental Disabilities
  • Parent Training Center Network, US
  • Parent Network on Disabilities
  • National Alliance of Families of Children with Mental Illness
  • Psychiatric Survivors' and Independent Living Networks
  • Through the Looking Glass
  • National Council on Disability

References
  1. Cohen, S. & Warren, R. (1985). Respite care: Principles, programs and policies. Austin, TX: PRO-ED.
  2. Taylor, S., Knoll, J., Lehr, S., & Walker, P. (1989). Families for all children: Values-based services for children with disabilities and their families. In: G. Singer & L. Irvin (Eds.), "Support for caregiving families" (pp. 41-53). Baltimore, MD: Paul H. Brookes.
  3. Taylor, S., Racino, J., Knoll, J. & Lutfiyya, Z. (1987). "The nonrestrictive environment: On community integration for persons with the most severe disabilities." Syracuse, NY: Human Policy Press.
  4. Edinger, B., Schultz, B., & Morse, M. (1984). Final report: issues relevant to respite services for people with developmental disability. Part One: The research. In: J. Racino (Ed.), "Final report of the Respite Project of Central New York". Syracuse, NY: Respite Project of Central New York, Transitional Living Services and the Syracuse Developmental Services Office.
  5. Shoultz, B. (1992b). "Like an angel they came to help us: The origins and workings of New Hampshire's family support network." Syracuse, NY: Research and Training Center on Community Integration, Center on Human Policy, Syracuse University.
  6. Racino, Julie Ann (2002). "Community Integration and Statewide Systems Change". Journal of Health & Social Policy. 14 (3): 1–25. doi:10.1300/J045v14n03_01. PMID 12086010.
  7. e.g., Hill, B., Lakin, K.C., Bruininks, R., Amado, A., Anderson, D. & Copher, J.(1989). Living in the community: A comparative study of foster homes and group homes for people with mental retardation. Minneapolis, MN: Center for Residential and Community Services, Institute on Community Integration, University of Minnesota.
  8. Provencal, G. (1980). The Macomb-Oakland Regional Center. In: T. Appoloni, J. Cappuccilli, & T. P. Cooke (Eds.), Towards excellence: Achievement in residential services for persons with disabilities. Baltimore, MD: University Park Press.
  9. Rucker, L. (1987). A difference you can see: One example of services to persons with severe mental retardation in the community. In: S. Taylor, D. Biklen, & J. Knoll (Eds.), "Community integration for people with severe disabilities". (pp. 109-128). NY, NY: Teachers College Press.
  10. Strully, J. & Strully, C.F. (1989). Family support to promote integration. In: S. Stainback, W. Stainback, & M. Forest, Educating All Students in the Mainstream of Regular Education. Baltimore, MD: Paul H. Brookes.
  11. Braddock, D., Hemp, R., Fujuira, G., Bachelder, L, & Mitchell, D. (1990). State of the states in developmental disabilities. Baltimore, MD: Paul H. Brookes.
  12. Knoll, J., Covert, S., Osuch, R., O'Connor, S., Agosta, J. & Blaney, B. (1992). "Family support services in the US: An end of decade status report". Cambridge, MA: Human Services Research Institute.
  13. Center on Human Policy. (1987-1989). A statement in support of families and their children. National Policy Institute on Families and their Children. Reprinted in: J. Racino. (2000). "Personnel preparation in disability and community life: Toward universal approaches to support." (pp. 31-32). Springfield, IL: Charles C. Thomas Publishers.
  14. Taylor, S., Bogdan, R., & Racino, J. (1991). "Life in the community: Case studies of organizations supporting people with disabilities." Baltimore, MD: Paul H. Brookes.
  15. Bersani, H. (1991, January). "Case study of the family support services conducted by the United Cerebral Palsy Association of Philadelphia, PA". Salem, OR: Community Integration Associates (for the Pennsylvania Developmental Disabilities Council).
  16. Piersma, J. (2002). Family support services. In: R. Schalock, P.C., Baker, & M.D. Croser (Eds.), "Embarking on a new century: 'Intellectual disabilities' at the end of the 20th century". (pp. 143-152). Washington, DC: American Association on Intellectual and Developmental Disabilities.
  17. Racino, Julie Ann (1991). "Organizations in community living: Supporting people with disabilities". The Journal of Mental Health Administration. 18: 51–59. doi:10.1007/BF02521134.
  18. Osburn, Joe; Caruso, Guy; Wolfensberger, Wolf (2011). "The Concept of "Best Practice": A brief overview of its meanings, scope, uses, and shortcomings". International Journal of Disability, Development and Education. 58 (3): 213–222. doi:10.1080/1034912x.2011.598387.
  19. Taylor, S., Bogdan, R. & Racino, J., (1991). "Life in the community: Case studies supporting people with disabilities." Baltimore, MD: Paul H. Brookes.
  20. e.g., Racino, J. (1985a). Respite program models — Use of generic services and family subsidy. In: J. Racino, Respite services in New York State. (pp. 27-30). Syracuse, NY: Syracuse University, Maxwell School of International and Public Affairs.
  21. e.g., Racino, J. (1983). Respite grant awarded. Transitional Living Services News, I(4), 1.
  22. Racino, J. (2000). Personnel preparation in disability and community life: Toward universal approaches to support. Springfield, IL: Charles C. Thomas Publishers.
  23. Braddock, D., Hemp, R., Fujuira, G., Bachelder, L, & Mitchell, D. (1990). New York State. "The state of the states in developmental disabilities". (p.336) Baltimore, MD: Paul H. Brookes
  24. Racino, Julie A. (1998). "Innovations in family support: What are we learning?". Journal of Child and Family Studies. 7 (4): 433–449. doi:10.1023/A:1022953926043.
  25. Chapter 461, Laws of New York, 1984 and New York State Mental Hygiene Law, Secs. 13.03, 13.04 in Bates, M. V. (1985, July). State family support/cash subsidies programs. Madison, WI: Wisconsin Council on Developmental Disabilities.
  26. Lubeck, S. & Garrett, P. (1988, Spring), "Child care 2000: Policy options for the future. "Social Policy", 31-37.
  27. Walker, P. (1999, June). "Child care for children with disabilities: Addressing the unique challenges." Battle Creek, Michigan: The Arc of Calhoun County.
  28. Lukemeyer, A., Meyers, M. & Smeeding, T. (1997, July). Expensive children in poor families: Out-of-pocket expenditures for the care of disabled and chronically ill children and welfare reform. "Income Security Policy Paper No. 17." Syracuse, NY: Syracuse University, Maxwell School of International and Public Affairs.
  29. Bradley, V.J. & Agosta, J. (1985). Tax policy recommendation. "Family care for persons with developmental disability: A growing commitment". Boston, MA: Human Services Research Institute.
  30. Bates, M.V. (1985). Table of state family support/cash subsidy programs. Madison, Wisconsin: Wisconsin Developmental Disabilities Council.
  31. Shoultz, B. (1987, September). Families for all children. Syracuse, NY: Center on Human Policy, Syracuse University.
  32. Bradley, V.J. & Agosta, J.M. (1985). Keeping your child at home: The case for family support. Exceptional Parent, 10-22.
  33. e.g., Racino, J. (1988). Resources on supporting people with extensive health care needs in the community. Syracuse, NY: Center on Human Policy, Rehabilitation Research and Training Center on Community Integration, Syracuse University.
  34. Castellani, P., Downey, N.A., Tausig, M.B. & Bird, W.A. (1986). Mental Retardation, 24(2), 71-79.
  35. Bersani, H. (1987). "Site visit report: Calvert County, Maryland Arc family support services. Syracuse, NY: Center on Human Policy, Rehabilitation Research and Training Center on Community Integration, Syracuse University.
  36. Michigan Department of Mental Health. (1983). "Family support subsidy program". Lansing, MI: Author.
  37. United Cerebral Palsy Governmental Activities Office. (1987, Summer). "Family Support Bulletin". Washington, DC: Author.
  38. Walker, P. (1988, July). Resources on family support. Syracuse, NY: Rehabilitation Research and /Training Center on Community Integration, Center on Human Policy, Syracuse University.
  39. Bogdan, R. & Taylor, S. (1987). Toward a sociology of acceptance: The other side of the study of deviance. Social Policy, 18(2), 34-39.
  40. O'Connor, S. (1995). "We're all one family": The positive construction of people with disabilities by family members. In: S.J. Taylor, R. Bogdan, & Z.M. Lutfiyya, The variety of community experiences: Qualitative studies of family and community life. (pp. 67-77). Baltimore MD: Paul H. Brookes.
  41. Racino, J. (2005). Social support. In G. Albrecht, Encyclopedia on disability. (pp. 1470-1471). Thousand Oaks, SAGE.
  42. Bronfenbrenner, U. (1979). The ecology of human development: Experiments in nature and design. Cambridge, MA: Harvard University Press.
  43. Cochran, M. & Woolever, F. (1983). Beyond the deficit model: The empowerment of parents with information and informal supports. In: I. Sigel & L. Laosa (Eds.), "Changing families". (pp. 225-247). New York and London: Plenum Press.
  44. Maitz, E. (1994). Family systems theory as applied to head injury. In: J.M. Williams & T. Kay, Head injury: A family matter.(pp.65-79). Baltimore, MD: Paul H. Brookes.
  45. Macklin, E. (1973). "Adolescent development courses I and II: Life course theory". Ithaca, NY: Cornell University, School of Human Ecology.
  46. Andrews, Mary P.; Bubolz, Margaret M.; Paolucci, Beatrice (1981). "An Ecological Approach to Study of the Family". Marriage & Family Review. 3 (1–2): 29–49. doi:10.1300/j002v03n01_02.
  47. Olson, D. & Miller, B. (1984). "Family studies: Review yearbook". (Vol. 2). Beverly Hills, CA: Sage.
  48. Sprey, J. (1990). "Fashioning family theories: New approaches". Newbury Park, CA: Sage.
  49. Chan, Xi Wen; Kalliath, Parveen; Chan, Christopher; Kalliath, Thomas (2020). "How does family support facilitate job satisfaction? Investigating the chain mediating effects of work–family enrichment and job-related well-being". Stress and Health. n/a (n/a): 97–104. doi:10.1002/smi.2918. ISSN 1532-2998. PMID 31840406.
  50. Turnbull, H.R., Beegle, G., & Stowe, M. (2009). The core concepts of disability policy affecting families who have children with disabilities. (pp. 423-443). In: T.M. Skrtic, E. Horn, & G. Clark, Taking stock of special education policy and practice. Denver, CO: Love Publishing Co.
  51. Racino, J. (2011/2012). Outcomes of technical assistance in community integration in states in the US: A retrospective and prospective on the Rehabilitation Research and Training Centers. Rome, NY: Author.
  52. Wolfensberger, W. (1972). "The principle of normalization in human services". Toronto: Canadian National Institute on Mental Retardation.
  53. Nirje, Bengt (1985). "The Basis and Logic of the Normalization Principle". Australia and New Zealand Journal of Developmental Disabilities. 11 (2): 65–68. doi:10.3109/13668258509008747.
  54. Thomas, S. & Wolfensberger, W. (1999). An overview of social role valorization. In: R.J. Flynn & R.A. LeMay (Eds.), "A quarter century of normalization and social role valorization: Evolution and impact". (pp. 125-159). Ottawa, Canada: University of Ottawa.
  55. e.g., Fujuira, G. & Braddock, D. 1999. Fiscal and demographic trends in mental retardation services: The emergence of the family. In: L. Rowitz (Ed.), Mental retardation in the year 2000. New York: Springer-Verlag. (Cited in: Stancliffe, R. & Lakin, K.C. (2005). Costs and outcomes of community services for people with intellectual disabilities. Baltimore, MD: Paul H. Brookes.)
  56. Knoll, J., Covert, S., O'Connor, S., Agosta, J., & Blaney, B. (1990). Family support services in the US: An end of decade status report. Cambridge, MA: Human Services Research Institute.
  57. Braddock, D., Hemp, R., & Rizzolo, M. (2008). The state of the states in developmental disabilities. Baltimore, MD: Paul H. Brookes.
  58. Rizzolo, Mary C.; Hemp, Richard; Braddock, David; Schindler, Abigail (2009). "Family Support Services for Persons with Intellectual and Developmental Disabilities: Recent National Trends". Intellectual and Developmental Disabilities. 47 (2): 152–155. doi:10.1352/1934-9556-47.2.152. PMID 19368483.
  59. Lewis, D. & Johnson, D. (2005). Costs of family care for individuals with developmental disabilities. In: R.J. Stancliffe & K.C. Lakin, "Costs and outcomes of community services for people with intellectual disabilities". (pp.63-89). Baltimore, MD: Paul H. Brookes.
  60. Williams, J. & Kay, T. (1991). "Head injury: A family matter". Baltimore, MD: Paul H. Brookes.
  61. LeGacy, S. (1978). "Training for parents of adults with mental illness: Series of sessions". Syracuse, NY: Transitional Living Services of Onondaga County, New York State, USA.
  62. Koroloff, N., Friesen, B., Reilley, L., & Rinkin, J. (1996). The role of family members in systems of care. In: B. Stroul (Ed.), "Children's mental health: Creating systems of care in a changing society". (pp. 409-426). Baltimore, MD: Paul H. Brookes.
  63. O'Brien, Mary R.; Whitehead, Bridget; Jack, Barbara A.; Mitchell, J. Douglas (2012). "The need for support services for family carers of people with motor neurone disease (MND): Views of current and former family caregivers a qualitative study". Disability and Rehabilitation. 34 (3): 247–256. doi:10.3109/09638288.2011.605511. PMID 22087569.
  64. e.g., Knoll, J. (1992). Being a family: The experience of raising a child with a disability or chronic illness. In: V.J. Bradley, J. Knoll, & J.M. Agosta, Emerging issues in family support. (pp.9-56). Washington, DC: American Association on Mental Retardation.
  65. Traustadottir, R. (1991). The meaning of care in the lives of mothers of children with disabilities. (pp. 185-194). In: S. Taylor, R. Bogdan & J. Racino, Life in the community: Case studies of organizations supporting people with disabilities. Baltimore, MD: Paul H. Brookes.
  66. Traustadottir, Rannveig (1991). "Mothers Who Care". Journal of Family Issues. 12 (2): 211–228. doi:10.1177/019251391012002005.
  67. Walker, P. (1991). Anything's possible: Project Rescue. (pp. 171-183) In: S.Taylor, R. Bogdan & J. Racino, Life in the community: Case studies of organizations supporting people with disabilities. Baltimore, MD: Paul H. Brookes.
  68. Shoultz, B. (1991). Regenerating a community: Residential, Inc., Ohio. (pp. 195-213). In: S. Taylor, R. Bogdan & J. Racino, Life in the community: Organizations supporting people with disabilities. Baltimore, MD: Paul H. Brookes.
  69. Bersani, H. (1990) "Presentations on families and community integration". Syracuse, NY: Research and Training Center on Community Integration, Center on Human Policy, Syracuse University.
  70. Bogdan, R. (1991). This isn't a program, this is our home: Reflections on the over-professionalized approach to caregiving. (pp. 243-251). In: S. Taylor, R. Bogdan, & J. Racino, Life in the community: Case studies of organizations supporting people with disabilities. Baltimore, MD: Paul H. Brookes.
  71. Taylor, S., Bogdan, R., & Racino, J. (1991). Life in the Community: Case Studies of Organizations Supporting People with Disabilities in the Community. Baltimore, MD; Paul H. Brookes.
  72. Walker, P. (1989, November). Family Supports in Montana: Region III: Special Training for Exceptional People (STEP). Syracuse, NY: Syracuse University, Center on Human Policy, Rehabilitation Research and Training Center on Community Integration.
  73. G. Singer & L. Irvin (Eds.), Support for caregiving families: Enabling positive adaptation to disability. Baltimore, MD: Paul H. Brookes.
  74. Racino, J. & Heumann, J. (1992). Independent living and community life: Building coalitions among leaders, people with disabilities and our allies. Generations, XI(1), 43-47.
  75. Racino, J. (1994). Creating change in states, agencies and communities. In: V.J. Bradley, J.W. Ashbaugh, & B. Blaney, Creating individual supports for people with developmental disabilities: A mandate for change at many levels. (p. 187). Baltimore, MD: Paul H. Brookes.
  76. Center on Human Policy. (1987). A statement in support of children and their families. "National policy institute in support of children and their families". In: S. Taylor, J. Racino, & P.Walker. (1992). Inclusive communities. In: S. Stainback & W. Stainback, "Controversial issues in special education." Boston: Allyn & Bacon.
  77. Lehr, S. & Lehr, B. (1990). Getting what you want: Expectations of families. In: V.J. Bradley & H.A. Bersani, "Quality assurance for individuals with developmental disabilities". (pp. 61-75). Baltimore, MD: Paul H. Brookes.
  78. Koroloff, N., Friesen, B., Reilley, L, & Rinkin, J. (1996). The role of family members in systems of care". In: B. Stroul, "Children's mental health: Creating systems of care in a changing society". (pp.409-426). Baltimore, MD: Paul H. Brookes.
  79. Warren, F. & Hopfengardner & Warren, S. (1989). The role of parents in creating and maintaining quality family support services. In: G.H.S. Singer & L.K. Irvin, "Support for caregiving families".(pp. 55-68). Baltimore, MD: Paul H. Brookes.
  80. Hawkins, N. E. & Singer, H.S. (1989). A skills training approach for assisting parents to cope with stress. In: G.H.Singer & L.K. Irvin, "Support for caregiving families". (pp. 71-83). Baltimore, MD: Paul H. Brookes.
  81. Dunst, C., Trivette, C.M., Gordon, N.J., & Pletcher, L. (1989). Building and mobilizing family support networks. In: G.H.S. Singer & L.K. Irvin, "Support for caregiving families". (pp. 121-141). Baltimore, MD: Paul H. Brookes
  82. The Arc and the American Association on Intellectual and Developmental Disabilities. (2008). "Family support". Washington, DC: Authors.
  83. Hayden, M. & DePaepe, P. (1994). Waiting for community services: The impact on persons with mental retardation and other developmental disabilities. In: M. Hayden & B. Abery (Eds.), "Challenges for a service system in transition." (pp. 173-206). Baltimore, MD: Paul H. Brookes.
  84. Taylor, S. & Searl, S. (1987). The disabled in America: History, policy and trends. In: P. Knobloch (Ed.), "Understanding exceptional children and youth." (pp. 449-581). Boston: Little, Brown.
  85. Moore, C. (1993). Letting go, moving on: A parent's thoughts. In: J. Racino, P. Walker, S. O'Connor, & S. Taylor, "Housing, support and community". (pp. 189-204). Baltimore, MD: Paul H. Brookes.
  86. "Housing support community".
  87. Bjarnason, D. (2005). The dignity of risk: My son's home and adult life. In: K. Jonhson & R. Traustadottir, Deinstitutionalization and people with intellectual disabilities. (pp. 251-258). London: Jessica Kingsley Publishers.
  88. Research and Training Center on Community Integration. (1990). Consultations with states and communities on community integration. Syracuse, NY: Research and Training Center on Community Integration, Center on Human Policy, Syracuse University.
  89. Racino, J. (2012). "Outcomes of technical assistance in community integration in states in the US: A retrospective and prospective on the Rehabilitation Research and Training Centers". Rome, NY: Author.
  90. Racino, J. (1999). A policy analysis of foster care: Children, adolescents and adults. In: J. Racino, "Policy, program evaluation and research in disability: Community support for all." (pp. 289-314). London: Haworth Press.
  91. Wisconsin Department of Health and Family Services. (1999). "Family support services." Madison, WI: Author.
  92. Racino, J. (1999). The role of family case study research in family policy: Local agency delivery systems. In: J. Racino, "Policy, program evaluation and research in disability: Community support for all." (pp. 235-262). London: Haworth Press.
  93. Secco, M.Loretta; Moffatt, Michael E.K. (1994). "A review of social support theories and instruments used in adolescent mothering research". Journal of Adolescent Health. 15 (7): 517–527. doi:10.1016/1054-139x(94)90134-o. PMID 7857949.
  94. Cochran, M., Dean, C., Dill, M.F., & Woolever, F. (1984). Empowering Families: Home Visiting and Building Clusters. Ithaca, NY: Cornell University, Family Matters Project.
  95. McCallion, P. & Grant-Griffin, L. (2000). Redesigning services to meet the needs of multicultural families. (pp. 97-120). In: M. P. Janicki & E.F.Ansello, Community supports for aging adults with lifelong disabilities. Baltimore, MD: Paul H. Brookes.
  96. Harry, B. (1992). Cultural diversity, families and the special education system: Communication and empowerment. Baltimore, MD: Paul H. Brookes.
  97. Turnbull, H.R. & Turnbull, A. (1987). The Latin American families and public policy in the US: Informal support and transition into adulthood. Lawrence, KS: University of Kansas, Beach Center on Families.
  98. Karner, Tracy X.; Hall, Lisa Cox (2002). "Successful Strategies for Serving Diverse Populations". Home Health Care Services Quarterly. 21 (3–4): 107–131. doi:10.1300/j027v21n03_06. PMID 12665074.
  99. Wang, Peishi; Michaels, Craig A. (2009). "Chinese Families of Children with Severe Disabilities: Family Needs and Available Support". Research and Practice for Persons with Severe Disabilities. 34 (2): 21–32. doi:10.2511/rpsd.34.2.21.
  100. Chung, I. & Samperi, F. (2004). An east-west approach to serving Chinese immigrants in a mental health setting. In: D. Drachman & Paulino, A., Immigrants and Social Work. (pp. 139-159). Binghamton, NY: The Haworth Press.
  101. e.g., O'Connor, S. (1993). "I'm not Indian anymore": The challenge of providing culturally sensitive services to American Indians. (pp.313-332). In: J. Racino, P. Walker, S. O'Connor, & S. Taylor, Housing, support and community. Baltimore, MD: Paul H. Brookes.
  102. J. Racino. (1993). Madison Mutual Housing Association and Cooperative: "People and housing building communities." (pp. 253-280). In: J. Racino, P.Walker, S. O'Connor, & S. Taylor, Housing, support and community. Baltimore, MD: Paul H. Brookes.
  103. Healey, J. (2010/2011). Appendix D: American Indians: Are they making meaningful progress at last? Race, ethnicity, gender and class. Los Angeles, CA: SAGE.
  104. Healey, L.M. (2004). Strengthening the link: Social work with immigrants and refugees and international social work. In: Drachman, D. & Paulino, A., Immigrants and social work: Thinking beyond the borders of the US. (pp.49-61). Binghamton, NY: Social Work Practice Press.
  105. Butler, S. (2004). Gay, lesbian, bisexual, and transgender (GLBT) elders: The challenges and resilience of this marginalized group. In: S.M. Cummings & C. Galambos, Diversity and aging in the social environment. (pp. 25-44). Binghamton, NY: Haworth Press.
  106. Macklin, E. (1975). Parent-teen panel. "Adolescents in Development, I and II". Ithaca, NY: Cornell University, College of Human Ecology.
  107. Litvak, S. & Racino, J. (1999). Youth and community life: Perspectives of adults with disabilities on personal assistance services. (pp. 207-224). In: J. Racino, "Policy, program evaluation and research in disability: Community support for all". London: Haworth Press.
  108. Litvak, S. Zukas, H., & Heumann, J. (1987). "Attending to America: Personal assistance for independent living". Berkeley, CA: World Institute on Disability, Rehabilitation Research and Training Center on Public Policy and Independent Living.
  109. Blum, Robert WM.; Garell, Dale; Hodgman, Christopher H.; Jorissen, Timothy W.; Okinow, Nancy A.; Orr, Donald P.; Slap, Gail B. (1993). "Transition from child-centered to adult health-care systems for adolescents with chronic conditions". Journal of Adolescent Health. 14 (7): 570–576. doi:10.1016/1054-139x(93)90143-d.
  110. Rusch, R.R., Destefano, L., Chadsey-Rusch, J., Phelps, L.A., & Szymanski, E. (1992). "Transition from school to adult lives." Sycamore, IL: Sycamore Publishing Co.
  111. Powers, L.E. & Sikora, D.M. (1997). Promoting adolescent self-competence. In: S.M. Pueschel & M. Sustrova, "Adolescents with Down Syndrome: Toward a more fulfilling life." (pp. 71-89). Baltimore, MD: Paul H. Brookes.
  112. ADAPT. (2011). "Youth summit." Denver, CO and Austin, TX: Author.
  113. Dybwad, G. & Bersani, H. (1998). "New Voices: Self advocacy for people with disabilities". Cambridge, MA: Brookline Books.
  114. Meyers, J. (2001). Age: 2000 (Census 2000 Brief). Washington, DC: US Census Bureau, C2KBR/01/12. In: Kutza, E. (2005). The intersection of economics and family status in late life: Implications for the future. In: Caputo, R., Challenges of Aging on US families. (pp. 9-26). Binghamton, NY: The Haworth Press.
  115. Gregory, J., Bethell, T., Reno., V. & Veghte, B. (2010, November). Strengthening the social security system in the long run. Social Security Brief, 35.
  116. Nuschler, D. (2010, September). Social security reform: Current issue and legislation. Washington, DC: Congressional Research Services.
  117. US Bureau of the Census. (1998, December) International database [on-line]. Available https://www.census.gov/cgi/ipc/idbsum. In: Ansello, E.F. & Janicki, M. (2000). The aging of nations: Impact on the community, the family, and the individual. (pp. 3-18). In: M. P. Janicki & E.F. Ansello, Community supports for aging adults with lifelong disabilities. Baltimore, MD: Paul H. Brookes.
  118. Consortium of Citizens with Disabilities. (2012, March). Disability program reform principles. Consortium of Citizens with Disabilities Social Security Task Force. Washington, DC: Author.
  119. Ansello, E.F. & Janicki, M.P. (2000). The aging of nations. (pp. 3-18). In: M. P. Janicki & E.F. Ansello, Community supports for aging adults with lifelong disabilities. Baltimore, MD: Paul H. Brookes.
  120. Carling, P.J. (1995). "Return to the community: Building Support Services for People with Psychiatric Disabilities". NY, NY: The Guilford Press.
  121. Racino, J. (1999). Psychiatric survivors, the international self help movement, and personal assistance services. "Policy, Program Evaluation and Research in Disability: Community Support for All". London: Haworth Press.
  122. Anthony, W., Cohen, M., Farkas, M. & Gagne, C. (2002). "Psychiatric Rehabilitation". Boston, MA: Center for Psychiatric Rehabilitation, Boston University.
  123. Friedman, R. M. (1994). Restructuring of systems to emphasize prevention and family support. Journal of Clinical Child Psychology, Volume 23 (Suppl.): 40-47.
  124. Weiss, H.B. & Greene, J. C. (1992, Feb & May). An empowerment partnership for family support and education programs and evaluations. Family Science Review, 5(1&2): 131-148.
  125. Llewllyn, G., Traustadottir, R., McConnell, D., Sigurjonsdottir, H.B. (2010). Parent with intellectual disabilities: Past, present and future. Malden, MA: Wiley-Blackwell.
  126. Booth, T., & Booth, W. (1996). Supported parenting for people with learning difficulties: Lessons from Wisconsin. "Representing Children", 9,2, 99-102.
  127. Booth, T. & Booth, W., (2000, February). Against the odds: Growing up with parents who have learning difficulties. "Mental Retardation", 38(1), 1-14.
  128. Peter, D. (1991). We began to listen: Training Towards Self Reliance, CA. In; S.Taylor, R. Bogdan & J. Racino, "Life in the community: Case studies of organizations supporting people with disabilities". (pp. 129-138). Baltimore, MD: Paul H. Brookes.
  129. Heighway, S.M., Kidd-Webster, S. & Snodgrass, P. (1998, November/ December). Supporting parents with mental retardation. "Children Today", 17, 24-27.
  130. Whitman, B. & Accardo, P. (1989). "When a parent is mentally retarded". Baltimore, MD: Paul H. Brookes.
  131. Racino, J. (1990). "Research field notes on families". Syracuse, NY: Research and Training Center on Community Living (Syracuse University) and the Research and Training Center on Community Integration (University of Minnesota).
  132. Feldman, Maurice A. (1994). "Parenting education for parents with intellectual disabilities: A review of outcome studies". Research in Developmental Disabilities. 15 (4): 299–332. doi:10.1016/0891-4222(94)90009-4. PMID 7972968.
  133. Tymchuk, A. (1990). "Decision-making abilities of mothers with mental retardation". Research in Developmental Disabilities. 11: 97–109. doi:10.1016/0891-4222(90)90007-u. PMID 2300689.
  134. Webster-Stratton, Carolyn (1997). "From Parent Training to Community Building". Families in Society: The Journal of Contemporary Social Services. 78 (2): 156–171. doi:10.1606/1044-3894.755.
  135. Kirschbaum, M. (1988, June). Parents with physical disabilities and their babies. "Zero to Three", 8(5), 8-15.
  136. Kirschbaum, M. (1996). Mothers with physical disabilities. In: D. Krotoski, M.A. Nosek, & M. Turk, "Women with physical disabilities: Achieving and maintaining health and well being". Baltimore, MD: Paul H. Brookes.
  137. Through the Looking Glass. (1998, April). "Parenting with a Disability", 6(1), 1-8.
  138. Chwalisz, Kathleen (1992). "Perceived stress and caregiver burden after brain injury: A theoretical integration". Rehabilitation Psychology. 37 (3): 189–203. doi:10.1037/h0079103.
  139. Williams, J. & Kay, T. (1991). Head Injury: A Family Matter. Baltimore, MD: Paul H. Brookes.
  140. Lakin, K.C. & Turnbull, A. (2005). National goals and research for people with intellectual and developmental disabilities. Washington, DC: The Arc of the US and the American Association on Mental Retardation.
  141. Turnbull, A., Turnbull, R., Agosta, J., Erwin, E., Fujuira, G., Singer, G., & Sodak, L. et al. (2005). Support of families and family life across the lifespan. In: K.C. Lakin & A. Turnbull (Eds.), National goals and research for people with intellectual and developmental disabilities. (pp. 217-256). Washington, DC: The Arc and the American Association on Mental Retardation.
  142. Racino, J. (1999). The role of family case study research in family policy: Local agency delivery systems. In: J. Racino, "Policy, program evaluation and research in disability: community support for all". (pp.235-261). London: Haworth Press (now Francis & Taylor)
  143. Zigler, E.F., Kagan, S.L., & Klugman, E. (Eds.), Children, families and government: Perspectives on American social policy". New York, NY: Cambridge University Press.
  144. Mittler, H. (1994). International initiatives in support of families with a member with learning disabilities. (pp. 15-31). In: P. Mittler & H. Mittler, Innovations in family support for people with learning disabilities. Lancashire, England: Lisieux Hall.
  145. Rillotta, F.; Kirby, N.; Shearer, J.; Nettelbeck, T. (2012). "Family quality of life of Australian families with a member with an intellectual/Developmental disability". Journal of Intellectual Disability Research. 56: 71–86. doi:10.1111/j.1365-2788.2011.01462.x.
  146. Racino, J. (in press, 2014). Family theory, family support and family studies. "Public Administration and Disability: Community Services Administration in the US". NY, NY: CRC Press, Francis and Taylor.

https://www.usa.gov/disability-services

This article is issued from Wikipedia. The text is licensed under Creative Commons - Attribution - Sharealike. Additional terms may apply for the media files.