The operation and subsequent impact of local area co-ordination and individualised funding on families caring for a family member with a disability

Families are the primary providers of caregiving services to individuals with disabilities in almost all countries and cultures of the world. This study examined the demands that are placed on caregiving families who support a family member with a disability and the resultant impact on the family. Governments in many countries have recognised the vital role that families play and have implemented various family support programs. A growing number of these programs offer families access to a .. case manager" who assists them to identify their needs and secure appropriate services to meet those needs. In addition, families have access to direct financial assistance to purchase needed services from either the public or the private sector. This study examined a case management and individualised funding service (Local Area Co-ordination) that was established in the State of Western Australia in 1987 to support families caring for a person with an intellectual disability. In 1991 that service was expanded in country Western Australia to include an additional 500 people with physical and sensory disabilities, which required the appointment of an additional 1 1 local area coordinators. This study was launched to coincide with the expansion of the local area co-ordination service into the area of physical and sensory disabilities. The research questions investigated included: how families responded to the local area co-ordination approach; how families utilised individualised funding; the resultant impact of local area co-ordination and individualised funding on families; how local area co-ordination and individualised funding varied in its implementation and impact across families caring for family members with various disabilities; and the total cost of delivering the services, including the individualised funding component. A series of four studies was undertaken over a period of two years: Study One involved a series of case studies in which 10 newly registered families were followed over two years. Study Two comprised a survey of 112 families who had been using the local area co-ordination service for one or more years. Study Three involved an analysis of individualised funding in which the spending patterns of 704 families were tracked over a one year period. Study Four investigated the total annual costs of providing the local area co-ordination and individualised funding service to some 2,500 consumers around the State. The results revealed that the expressed needs of families caring for a family member with a physical or sensory disability did not differ markedly from families caring for a family member with an intellectual disability. In the case study phase of the research, families reported a wide array of concerns revolving around individual and family functioning, care demands, co-ordination of services, delivery of services, informal supports, housing, transport, equipment, education, employment. respite and therapy. A major finding of this study was that local area coordinators, with the aid of individualised funding, made significant progress in resolving these concerns. In most areas local area coordinators significantly exceeded the expectations of families. Case study families saw the major strengths of local area co-ordination as being their accessibility and availability, good back-up and support, personal involvement with the family, and good information and advocacy. Few weaknesses were identified by families. As a result of the support they had received from their local area coordinator, most families reported that they felt more confident and optimistic about the future. The survey of 112 families in Study Two corroborated the findings of the case studies, with no significant differences in responses across disability types. Survey families reported that, as a result of their local area coordinator’s general support and procurement of needed services, they felt much more involved in decisions, able to exercise real choice, and more in control of services they received. A a consequence, they reported feeling much more secure, supported, self-sufficient, satisfied and optimistic about the future. Individualised funding was found to have played an important adjunctive role. The individualised funding analysis in Study Three revealed that families consumed an average of AUS$1,626 (range, AUS$12 - AUS$20,780) in the funding analysis year. The majority of funds (59%) were paid directly to the families: 22% in advance and 37% as a rebate. The remaining funds (41%) were paid directly to a service provider by the local area coordinator on the instructions of the family. The analysis revealed that between them, families purchased 33 different types of support which could be categorised under 10 major support categories: respite, domestic, caregiver, personal, professional, employment, education, leisure, accommodation and equipment. An important finding of this study was that only 20% of all eligible families (n=2,524) sought recourse to individualised funding to assist in meeting their needs. The absence of any funding ceilings on individual consumers coupled with virtually no restrictions on what goods or services could be purchased and its ready availability was highly valued by families. The cost analysis of local area co-ordination, undertaken in Study Four, revealed it to be a more effective and efficient program than traditional disability support services operating in the State. The individualised funding component was also shown to be cost effective against comparable funding programs operating in Australia or overseas. By the end of the study period (June, 1995) the number of local area coordinators operating around the State of Western Australia had grown to 53. A total of 2,524 people with disabilities and their families were using the service and the cost of delivering the program (including the individualised funding component which represented 39% of total program expenditures) was AUS$5.56 million. In May 1996, the State Government of Western Australia announced an AUS$6.04 million increase in funding to the local area co-ordination program. This will enable local area co-ordination to be extended throughout the State and serve an estimated 4,500 people with disabilities and their families. Further research needs to be undertaken to ascertain how the local area co-ordination and individualised funding approach operates in metropolitan settings and its subsequent impact on caregiving families. The mixed methods, longitudinal research design adopted in this study could be replicated in metropolitan settings, thereby permitting a differential analysis of the operation and impact of local area coordination across geographic localities. The literature has noted a lack of longitudinal studies and quantitative measures in previous research into case management and individualised funding approaches. An opportunity exists to revisit case study and survey families from this study at a later date to extend the longitudinal findings and to ascertain the longer term effects of local area coordination and individualised funding. As part of this follow-up quantitative data should be sought as to the impact of local area co-ordination and individualised funding on out-of-home placement of people with disabilities and the resultant savings to government. Establishing that family support programs deliver social cost-benefits to governments, the community and consumers alike will ensure that caregiving families are adequately supported and resourced into the future