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. 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. 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. 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. 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. 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. 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. 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' were identified nationally which served children and their families in the community (e.g., MacComb-Oakland, Michigan, Dane, LaCrosse, and Columbia counties, Wisconsin). 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). 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 and then Governor Mario Cuomo and his wife Matilda held the first Family Support Conference in the Albany, New York. New York State indeed by 1988 reported $16,536,000 in discrete family support initiatives which did not include new agency family/cash subsidy demonstrations funded later in 1989-1990 in the state. or agency cash subsidies included as part of family support demonstration programs (e.g., recreation/respite in generic agencies). In the public policy arena, respite was often explored in the context of child care for children with disabilities, and additional expenses of raising a child with a disability as especially critical in low income 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. 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, an article on the case for family support for families, bibliographic references, innovative agencies and organizations, 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. 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. 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. Between the 1970s and 1990s, family support was developed in the context of community integration, building on the quarter century work on physical and social integration of families and their children. 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). 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. 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. By 2006, family support spending was reported to be $2,305,149,428 in the US, yet, in FY 2006, it remained at only 5% of total intellectual and developmental disabilities spending of $43.84 billion. 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. 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. and in adult mental health. 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 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). 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. The field then was challenged in the 1990s to broaden approaches to families, including gendered caring, inner-city population groups, rural areas of the country, a 'whatever it takes approach', and over-professionalized approaches to people's homes. 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., two major national and international comprehensive reform efforts in community living. Baltimore, MD: Paul H. Brookes. 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. In line with the parent-professional partnerships of the 1980s and 1990s, the Oregon Research Institute published a book on Support for caregiving families. The book included the progressive professional stances on family stress and support (for critique, see Racino & Heumann, on children as a 'burden'), value-based services based on the Center on Human Policy's statement in support for children and their families (1987), role of parents in quality services, coping skills (often addressed by behavioral or skills training), human development and informal support, 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. 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.