Most older people, people with disabilities and people with chronic health conditions are primarily cared for by family members. It is estimated that 43.5 million adults in the United States provide care to a person with a disability, over 85% of whom are family members. Family caregivers may help with such tasks as eating and bathing, money management, laundry or administering medications. This is unpaid work and family caregivers may have other responsibilities such as paid employment and caring for children or other family members.
In this context the provision of family support is important for caregivers. Support is associated with better family quality of life, functioning, satisfaction, and a reduction in stress. Family support can include information, education/training, therapies, home modifications, legal services and day programs. Yet studies have found family caregivers have many unmet support needs.
Family caregiving support is not included in most social policies related to people with disabilities. For example, research shows that few funds are allocated to family and individual supports compared to group homes. Most Medicaid waiver programs do not fund family or caregiver training and focus entirely on the enrollee. Nonetheless Medicaid is recognizing the importance of families providing unpaid care, appraisal of the needs of family caregivers and the impact of unmet needs.
This study entitled, “Longitudinal appraisals of family caregiving for people with disabilities enrolled in Medicaid managed care” by authors Crabb, Owen, Stober and Heller addresses the experiences of family caregivers in the State of Illinois by appraising caregiver satisfaction, burden and self-efficacy. Illinois managed care enrollees with disabilities and their family caregivers completed surveys at two time points. Researchers looked at the association between demographic characteristics, being the parent of the child with a disability, type of disability, unpaid care time, family unmet needs and three outcomes: caregiver burden, satisfaction and self-efficacy. The results showed that families with fewer unmet needs were more satisfied, had higher levels of self-efficacy, and had lower burden than family members who had more unmet family support needs.
These results show the importance of meeting family support needs as early as possible to reduce caregiving burden and improve caregiving satisfaction and self-efficacy, which is especially important within managed care systems.