“…With an increasingly large population of adults with I/DD living with or being supported by family carers (Braddock, Emerson, Felce, & Stancliffe, ; Prouty, Alba, Scott, & Lakin, ) in different countries, understanding parents' and siblings' experiences as carers and as seekers of formal services is needed to inform policy and practice. There is a growing body of literature regarding such experiences, yet to date no review exists with the explicit purpose of identifying information needs to inform policy and practice change and monitoring.…”
Family carers play an important role supporting individuals with intellectual and developmental disabilities (I/DD) into adulthood. Funders of services often desire this ongoing involvement by family members yet they rarely collect data about family carers. As policy makers and planners are increasingly recognizing the need for information related to indicators of system performance, a scoping review was conducted to identify system‐wide information needed about family carers of adults with I/DD that would help improve the quality of service provided. A final review of 87 research articles was organized in terms of service use, service need, and permanency planning by family carers of adults with I/DD. Service use and need were associated with the presence of challenging behaviors among individuals with I/DD as well as carer demographics and health status. In addition, carers' subjective view of how well they think they can provide for their child in the future was an important determining factor of service need. Permanency planning was associated with child level of functioning as well as parent income, social support, and compound caregiving demands. Studies highlighted the importance of measuring family carers' mental and physical health and their perceptions of the adequacy of services received. Considered also were methodological limitations, highlighting considerations for future system monitoring. Methodological limitations of studies reviewed include reliance on cross‐sectional data, samples consisting of families already receiving at least some services, and little information about the process of seeking and obtaining services. Areas to target in future system monitoring include information on who needs services, what services are needed, families' perceptions of the caregiving experience and families' experiences waiting for services over time. Understanding the experiences of family carers as seekers of formal services can help inform policy and practice.
“…With an increasingly large population of adults with I/DD living with or being supported by family carers (Braddock, Emerson, Felce, & Stancliffe, ; Prouty, Alba, Scott, & Lakin, ) in different countries, understanding parents' and siblings' experiences as carers and as seekers of formal services is needed to inform policy and practice. There is a growing body of literature regarding such experiences, yet to date no review exists with the explicit purpose of identifying information needs to inform policy and practice change and monitoring.…”
Family carers play an important role supporting individuals with intellectual and developmental disabilities (I/DD) into adulthood. Funders of services often desire this ongoing involvement by family members yet they rarely collect data about family carers. As policy makers and planners are increasingly recognizing the need for information related to indicators of system performance, a scoping review was conducted to identify system‐wide information needed about family carers of adults with I/DD that would help improve the quality of service provided. A final review of 87 research articles was organized in terms of service use, service need, and permanency planning by family carers of adults with I/DD. Service use and need were associated with the presence of challenging behaviors among individuals with I/DD as well as carer demographics and health status. In addition, carers' subjective view of how well they think they can provide for their child in the future was an important determining factor of service need. Permanency planning was associated with child level of functioning as well as parent income, social support, and compound caregiving demands. Studies highlighted the importance of measuring family carers' mental and physical health and their perceptions of the adequacy of services received. Considered also were methodological limitations, highlighting considerations for future system monitoring. Methodological limitations of studies reviewed include reliance on cross‐sectional data, samples consisting of families already receiving at least some services, and little information about the process of seeking and obtaining services. Areas to target in future system monitoring include information on who needs services, what services are needed, families' perceptions of the caregiving experience and families' experiences waiting for services over time. Understanding the experiences of family carers as seekers of formal services can help inform policy and practice.
“…As the discussion of Ohio and North Carolina suggests, virtual deinstitutionalization has occurred. As a result, a federalism feature that persists is that despite federal funding, federal regulations, and court rulings, states do differentially organize their I/DD systems to achieve roughly similar aims, accessing similar intergovernmental programs (Prouty et al , 83–84).In fields such as I/DD, where citizen social rights and life chances hinge on public funding and NGO supports, at the state level, government‐NGO connections are now essential to understanding policy and program direction.…”
Programming for persons with intellectual and developmental disabilities has shifted from state institutional care to community‐based services, facilitated by federal government support as well as services delivered by nongovernmental organizations (NGOs). For persons with mental retardation, epilepsy, cerebral palsy, and autism, these programs not only have moved into the health care orbit but also are in search of more holistic ways to maintain persons with their families and in communities. Three major forces have led to this shift: federal financing, particularly under Medicaid; integration of services around clients; and externalized service delivery by NGOs. These are increasingly connected forces, facilitated particularly by the Medicaid Home and Community‐Based Services Waiver. They have transformed state‐operated systems. Increasingly, states are working with NGO case management and service delivery providers to organize and integrate services to face this continuing challenge.
“…It has also spawned the growing emphasis on self-directed funding, person-centered planning, and home-based supports (Prouty et al, 2008). Such policies, as embodied in the conduct of public intellectual and developmental disability systems, facilitate society's response to individual support needs and promote person-referenced rather than programreferenced outcomes.…”
Section: Social Factors Influencing Public Policy and Its Adoptionmentioning
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