More than seven million people in the U.S. and 475,000 Texans have intellectual and developmental disabilities (IDD). Sandy Magaña, Ph.D., MSW, serves as the Professor in Autism and Neurodevelopmental Disabilities at the Steve Hicks School of Social Work (SHS) and Executive Director of The Texas Center for Disability Studies – and she has long focused her work on the needs of these individuals and those who care for them.
Over the past 20 years, there has been increased recognition of the importance of families and the need to provide them with better support. “In the U.S., an estimated 80% of individuals with IDD are thought to get support from their families,” Dr. Magaña said, estimating an even higher percentage among racially and ethnically minoritized groups. Understanding the needs of IDD caregivers is critical to provide them with the support they need, but there are obstacles.
Challenges: Understanding IDD Caregiver Needs
With little data about the needs of IDD caregivers, Dr. Magaña says existing data primarily focus on families that are receiving government-funded support and services. However, most families of individuals with IDD do not receive federal or state services or support.
Additionally, minoritized families are underrepresented in the data. “There hasn’t been a complete understanding of the family context, including other family members, such as grandparents, siblings, or fathers; or other family types, such as extended families, families that include LGBTQ+ members, or families of choice,” Dr. Magaña said.
Other challenges include long waiting lists to receive support. According to Dr. Magaña, the waiting list for Medicaid waiver programs in Texas that provide services to people with IDD now stretches to 13 years. Even after an IDD individual receives services, the reimbursement rates are very low. A shortage of support workers – whose average hourly pay is only slightly higher than minimum wage – compounds the issue.
Research: One Size Doesn’t Fit All
To gain more insights into the needs of IDD family caregivers, Dr. Magaña would like more research on the needs of families that do not receive support and services. She also wants to see the impact of services on families that do receive them, and whether disparities in services exist across race, ethnicity, income levels, and rural vs. urban settings, among other factors.
Research that focuses on racial and ethnic disparities in health and specialty services for children with IDD is critical, Dr. Magaña said, citing obstacles for families such as language barriers, limited economic resources, lower education levels, and not enough information to make the right choices.
Additionally, Dr. Magaña noted that minoritized families often experience discrimination. Her research on Latino families suggests that providers need to be more proactive in ensuring they get the right referrals for important services and can access more resources. Her research team has now adapted parent education programs for Latino, Black, Chinese, and Navajo families. As her research expands, Dr. Magaña believes that placing families at the center of research is essential to ultimately serving the needs of caregivers.
“It’s really important to understand that one size doesn’t fit all and that all programs are tailored for and relevant to different groups,” she said. “We need to push harder to ensure that families are active members of research teams, not just participants. We need to include people with disabilities, as well as family members, and make sure their voices are heard.”