Supported Decision Making in South America: Analysis of Three Countries' Experiences.

Background. Following the adoption of the UN Convention on the Rights of Persons with Disabilities, there has been increased interest in supported decision making (SDM) as a strategy to realize the right to legal capacity of persons with intellectual and psychosocial disabilities. Support for decision making has been delivered formally through SDM services as well as informally through interpersonal networks. Various SDM programs have made efforts to systematize informal support, showcasing a variety of SDM delivery models that could benefit SDM implementation in low- and middle-income countries. Methods. This article examines and discusses three SDM projects in South America (Colombia, Peru, and Argentina) that have been directly implemented by civil society organizations, including organizations of persons with disabilities and their families. Analyzed program components include person-centered planning, the nature of support relationships, the presence of supporter training, community involvement, and the utilization of quality assurance measures such as monitoring and program evaluation. Conclusions. The results and learning from these initiatives constitute a valuable source of information for legislators and policymakers for the future development of supported decision-making programs, which are an essential form of support and a mechanism for fulfilling the right to legal capacity in low resource settings.

Longitudinal appraisals of family caregiving for people with disabilities enrolled in Medicaid managed care.

Objective: To longitudinally examine the impact of public family support on appraisals of caregiving burden, satisfaction, and self-efficacy among families of adults with disabilities.Background: Little research exists on family support and the family experience within Medicaid managed care across disabilities and longitudinally.Method: Illinois Medicaid managed care enrollees with disabilities and their family members completed surveys over 2 years. Only families and enrollees who lived together were included (N = 182 pairs).Results: Family members with more unmet family support needs had increased caregiving burden and decreased satisfaction and self-efficacy. Family members providing more unpaid care reported higher burden. Black family members had significantly lower burden, and parents had significantly lower satisfaction and self-efficacy. Family members of enrollees with intellectual and developmental disabilities had higher self-efficacy.Conclusion: Family support is important to caregiving appraisals.Implications: There is a need for including family needs for services within assessments for services and within policy.Implications for rehabilitationFamilies provide a substantial amount of care for their family members with disabilities.More family support for family caregivers of people with disabilities is related to better caregiving appraisals within Medicaid managed care.Family caregiver support needs should be taken into account within policy and service assessments.