Equipping parents across the lifespan of their children with intellectual and developmental disabilities

Family

Across the lifespan, families are the most important and consistent source of supports and advocacy for their daughters and sons with intellectual and developmental disabilities. Despite this, relatively little is known concerning what parents know about resources, what they consider most helpful, and how they prefer to access resources. To address this, Vanderbilt Kennedy Center (VKC) conducted a study of Tennessee families. Their findings have implications for practice and policy.

Elise McMillan, J.D.

Elise McMillan, J.D.

Erik Carter, Ph.D.

Erik Carter, Ph.D.

The study was co-led by Erik Carter, Ph.D., Cornelius Vanderbilt Chair and professor of Special Education, and Elise McMillan, J.D., co-director of the VKC University Center for Excellence in Developmental Disabilities, director of Community Engagement and Public Policy, and senior lecturer in Psychiatry & Behavioral Sciences.

Study Description

Participants were 1,738 parents or caregivers of children and adults with intellectual and developmental disabilities (referred to as “parents” hereafter). All had a son or daughter with a primary or secondary label of intellectual disability, autism, or multiple disabilities, and all lived in Tennessee. The majority were mothers, and most parents (94%) said that their daughter or son lived with them. Most (61%) had children ages 0-21, the rest ages 22-78.

The research team partnered with 131 organizations, groups, and networks and with school districts to invite participants, which helped the team achieve broad representation from a sample reflecting the racial/ethnic, economic, and geographic diversity of Tennessee families.

The team developed a survey (a) to understand parent expectations, priorities, and concerns related to employment and community involvements, and (b) to learn the resources and “training pathways” they would regard as most helpful. The survey was available in a format for parents of children 0-21, and the other in a format for parents of children ages 22 and older. Both formats covered (a) parents’ familiarity with existing resources, (b) perceived helpfulness of different resource topics, (c) likelihood of parents choosing to access different types of resources, and (d) likelihood of parents accessing different members of their networks.

Findings and Implications for Practice and Policy

Familiarity. The majority of parents reported that they were “not at all familiar” or “a little familiar” with programs, options, supports, and activities addressing: family supports, health, social relationships/friendships, recreation and leisure, other community activities, financial/benefits, vocation/work, residential; postsecondary education.

Parents of children with intellectual and developmental disabilities who did not have autism were more familiar with local or state resources than parents whose children had autism. Parents whose daughters or sons were adults were more familiar with local or state resources than parents of children and youth. Parents who had at least a bachelor’s degree were more familiar with all nine areas than those with less formal education.

Although low ratings of familiarity may reflect a lack of community resources, the pattern statewide suggests that available services and resources may not be connecting with families. Families indicated strong interest in targeted information to meet specific needs, especially at points of transition.

Differences found in parents’ familiarity with resources related to racial/ethnic, socioeconomic, and geographic characteristics provide support for more focused outreach for culturally and economically diverse families. Dissemination strategies beyond “one size fits all” mass dissemination are needed. Educators and service providers need to tailor dissemination to the needs of individual families they are serving.

Helpfulness. The topics rated as being “somewhat helpful” to “very helpful” for the largest percentage of parents were: understanding the adult service system (82%); supporting strong transition planning (81%), accessing Medicaid waiver programs for services and supports (80%), and connecting my son or daughter to a job in the community (79%).

Parents who wrote in other topics of interest identified the need for information on health insurance, community recreation programs, independent living, transportation and mobility, and respite care.

Access. The ways in which the highest percentage of parents indicated that they would be “somewhat likely” or “likely” to access resources were: parent handbook (83%), printed fact sheets and resource guides (80%), and downloadable fact sheets and resources guides (79%).

These findings suggest that conferences and workshops should not be the primary or sole avenue for accessing resources. Parent interest in technology-based resources varied across education level and community type. Although some parents regarded technological access as helpful (e.g., apps on smartphones, tablets, or interactive websites), they also welcomed more traditional ways of accessing information through print materials. The latter was especially true for families in rural communities. Taken together, these findings emphasize the importance of offering multiple ways for families to access information.

Networks. Formal and informal personal networks are a significant support for families. With regard to networks for helping daughters or sons find a job, preferred networks were: someone from a local disability organization (79%), someone from a disability employment provider (76%), a friend (65%), someone from the school system (62%), someone from a faith community (61%), a family member or relative (61%).

These findings confirm that both formal supports from disability-related service providers and informal or natural supports of family members, friends, and faith community are valued and should be considered in meeting family needs.

Information needs across the lifespan

The research team found consistent differences in ratings of parents of children and youth compared with those of parents of adults. Practitioners and policy makers urgently need “to consider the different needs and interests when supporting parents to, through, and beyond the post-school transition for their son or daughter . . . . it is clear a constellation of partners and entities from early childhood to school-based to adult services are needed to deliver this information to families in advance rather ‘just in time.’” (p.356).

Recommendations

Based on findings, the research team offered three recommendations for practice and policy.

First, it is essential that schools, agencies, disability organizations, and other groups should consider how best to align the resources, workshops, and other materials they produce in ways that address the individualized needs of parents across the state.

Second, these same groups should reflect on the ways in which they disseminate these resources and materials so that they effectively reach every family in Tennessee and address their diverse needs.

The third recommendation relates to the wide variety of disability-related personnel preparation programs in universities and colleges, which need to emphasize “parents’ unique perspectives, concerns, and priorities regarding employment and community involvements for their son or daughter, as well as the resources parents find most helpful….” (p. 357).

Gilson, C. B., Bethune, L. K., Carter, E. W., & McMillan, E. D. (2017). Informing and equipping parents of people with intellectual and developmental disabilities. Intellectual and Developmental Disabilities, 55: 5, 347-360.

Jan Rosemergy is VKC Director of Communications and Dissemination.

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