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.[11][12][13] 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.[14][15][16][17]

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"[18][19] were identified nationally which served children and their families in the community (e.g., MacComb-Oakland, Michigan, Dane, LaCrosse, and Columbia counties, Wisconsin).[20] 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).[21] 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[22] and then Governor Mario Cuomo and his wife Matilda held the first Family Support Conference in the Albany, New York.[23] New York State indeed by 1988 reported $16,536,000 in discrete family support initiatives[24] which did not include new agency family/cash subsidy demonstrations funded later in 1989-1990 in the state.[25] or agency cash subsidies included as part of family support demonstration programs (e.g., recreation/respite in generic agencies).[26] In the public policy arena, respite was often explored in the context of child care for children with disabilities,[27][28] and additional expenses of raising a child with a disability as especially critical in low income families.[29][30]

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.[31] 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,[32] an article on the case for family support for families,[33] bibliographic references,[34][35][36][37][38] 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.[39]

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 psychosocial theories, family empowerment theory, and positivistic theories, such as the sociology of acceptance.[40][41][42][43][44][23][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 report on these organizations supporting families in the community and those supporting adults with disabilities to live in their own homes.[18][71] 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.

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.[72] The book included the progressive professional stances on family stress and support (for critique, see Racino & Heumann, on children as a "burden"),[73][74] value-based services based on the Center on Human Policy's statement in support for children and their families (1987),[75] role of parents in quality services,[76][77][78] coping skills (often addressed by behavioral or skills training),[79] human development and informal support,[80] 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.[72] 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.[81]

As a model of community services

As deinstitutionalization policies in the US moved toward the development of community services,[82][83] 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).[84] This approach is valued internationally as one way of adult's attaining adult status, especially in Western countries. {http://www.barnesandnoble.com/s/Housing-support-community[85] 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).[86][87] 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.[88] 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).[89][90][91]

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:

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.[92] 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).[93]

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.[94][95][96][97][98] Original approaches involved services to Native Americans on reservations (often poverty) or as "assimilation into white society"[99] in contrast to approaches involving housing integration of "diverse populations" (e.g., Asian Americans) in mixed-income housing in small cities.[100] Today (2012), the American Indians, for example, own and operate casino gambling in the US and obtain funds toward their own social services.[101] 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[102] as does the gay, lesbian, bisexual, and transgender activist populations.[103]

Youth with disabilities

Youth with disabilities became an emerging "age group"[104] 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.[105][106] 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.[107][108][109] Today, self-advocacy has grown worldwide and youth, in particular, have sought their own voices and futures.[110][111]

Aging population

The changing demographics of aging in the US have been well documented in diverse fields[112] with its public facing the need to revamp the nation's Social Security system.[113] 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%".[114] The elder population also is living longer, expected to have a marked increase in the people living over the age of 80,[115] involving an increase in "disabilities" such as dementia (e.g., Public Broadcasting, 2011), effecting social security disability benefits,[116] and also the discovery of older adults with lifelong disabilities in "community-dwelling" two generation families.[117]

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).[118] 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.[119] 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).[120] 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.[121] 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".[122]

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[123][124][125] after initial programs and studies in the US as early as the late 1980s and 1990s.[126][127][128][129][130][131] In addition, traditional parent training programs moved to community building[132] and parents/mothers with physical disabilities also prominently advocated for better lifestyles for themselves and their children,[133][134] 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."[135]

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",[136] 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.[137]

US policy goals

In the National Goals and Research for People with Intellectual and Developmental Disabilities,[138] 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).[139] 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:

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).[140][141]

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.[142]

In 2012, the international community is on individual and family life quality,[143] family support is a long term services and supports (LTSS) in the US in communities[88] and a new chapter, "Family theories, family support and family studies" will be released in 2014.[144]

Resources on Families and Family Support

References

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