Feature Issue on Engaging Communities Underrepresented in Disability Research

Clear-language summary

Families have always been the main source of support for children and adults with intellectual and developmental disabilities (IDD). In the United States, about 80% of people with IDD receive some support through their families. Many live with their families well into adulthood. This may be more common in families from minoritized communities, who have been marginalized or hurt in many ways because of direct or systemic oppression. We need to learn more about all types of families to make a system that works for everyone. We also need to look at the different ways families meet their own needs, instead of seeing them only as families with problems.

There are long waiting lists to receive home and community-based services (HCBS), and when families do get support, it is often not enough to meet all of their needs. The amount of money some states spend on services for people with disabilities is very low. For example, in Texas, DSPs are paid an average of $8.11 an hour when fast-food restaurants are paying at least $15 an hour. This makes it difficult for families to hire direct support professionals (DSPs). We need to learn more about the role of family navigators and how they might be helpful for families who are not receiving enough services. We also need to look at how communities can become stronger to support families. Finally, we need to understand both the goals and worries of families from minoritized communities because they are often left out of research studies.

Families have always been the primary source of support for children and adults with intellectual and developmental disabilities (IDD). In the United States, an estimated 80% of individuals with IDD are thought to get support from their families. More than half of all recipients of Medicaid-funded supports and services for people with IDD live with their families.

Many people with IDD continue to live with their families well into adulthood, and anecdotal evidence suggests this occurs even more often in racially and ethnically minoritized groups. One of the biggest challenges related to research about supporting families is the lack of national data. There are few sources of data about family caregivers, and national samples that represent the diversity of families across the United States often do not include caregiver questions, so it's hard to determine the needs are of caregivers and families.

Research about supporting families has consistently overlooked historically minoritized groups and has focused mainly on families who receive government-funded supports and services. And while there has been some research on Latino and Black families with members with IDD, there has been very little on other groups, including Asian or Arab families.

In the past, research has focused on the challenges and negative outcomes related to family caregivers. There's been less attention to family resilience and the factors that contribute to resilient families. Family research has tended to focus on the experiences of mothers, and that is because mothers tend to be the main caregivers of children and adults with IDD. So, 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.

Another important issue right now is that most families with a member who has IDD do not receive federal or state supports for their services. Many states maintain long waiting lists. In Texas, the waiting list for Medicaid waiver programs that provide services to people with IDD is now more than 13 years, based on the January 2022 Texas Statewide Intellectual Disabilities Strategic Plan.

Once individuals obtain services, the reimbursement rates and dollar amounts can be very low. Right now, a huge crisis nationwide, but especially in Texas, is that there's a lack of direct support workers and the pay is so low. Direct support workers in Texas earn an average of $8.11 per hour in base pay, while fast-food restaurants are paying at least $15. So, guess what choices most individuals make?

We need more research on the experiences of families who are not in the system and their struggle to obtain services. And, we need more research on the impact of services for those who are in the system. We also need to examine whether there are disparities among those in the system across race and ethnicity, rural and urban settings, income levels, and other kinds of differences.

More recently, there has been some attention to researching the experiences of siblings, as a sibling leadership network has grown and advocates for the need to include siblings in family research have become more vocal. Some attention has been paid to outcomes of family caregivers from families who have been underrepresented in research, such as immigrant families, Latino, and Black families. And some of this research has shown that being a family caregiver is a different experience across these groups. Black caregivers, for example, report heightened concerns about interactions between their family member with IDD and law enforcement.

Research focused on racial and ethnic disparities in health and specialty services for children with IDD affects families in many ways. Families may face barriers to accessing key services for their children, such as language barriers, limited economic resources, lower education levels, and not enough information to make the right choices. They also experience discrimination. My research on Latino families suggests that providers need to be more proactive in ensuring they get the right referrals for important services. Our research team has also created parent training programs tailored for specific groups to ensure that they are getting the information or can access more resources for their child or for their family. For example, we've adapted a parent education program started with Latino families, and then we adapted it for Black families and Chinese immigrant families. We also have a group working on adapting it to the Navajo community. It’s really important to understand that one size doesn't fit all and that we need to make sure programs are tailored for and relevant to different groups.

More attention is being paid to the fact that families provide support across the lifespan and that supporting families extends far beyond the school-age years. There's also a recognition that family caregivers of individuals with IDD have a different experience than other family caregivers. For example, the Family & Individual Needs for Disability Supports survey by The Arc of the United States and the University of Minnesota’s Institute on Community Integration survey found that family caregivers of adults with IDD provide more hours of support, more supports, and did it for longer periods of time than did caregivers responding to other caregiver surveys, including a study by the National Alliance for Caregiving, which focuses on caregivers of older adults.

Over the past 20 years, there has been increased recognition of the importance of families and the need to provide them with better support, including more and better respite care.

The Family Support Research and Training Center (FSRTC) was funded by the Administration on Community Living to engage families and stakeholders in investigating the needs of families who support their family members with disabilities and exploring the kinds of support practices that are needed for families to fulfill this important social role.

The FSRTC created a strategic plan for family support research and conducted six additional projects, including a study of caregivers whose adult children were in managed care programs, studies that examined the effects of self-directed care programs on caregivers, a study that identified promising practices for caregivers, and a training intervention for Latino parents.

Other work aimed at supporting families includes the development of a community of practices of states that are using Charting the LifeCourse framework as a way to help families think about what makes a good life and how to get there. Another article in this issue discusses how the framework is being adapted in different cultural contexts. A key component of the framework is the need for social networks and ties to communities, rather than being dependent solely on paid services. This is a family-centered approach that builds on and contributes to family resilience.

Additional steps to more adequately and accurately capture the experience of family caregivers in minoritized communities include practices such as oversampling of underrepresented racial and ethnic groups, immigrants, and refugees; and comparing family caregivers’ experiences across race, ethnicity, language, and culture.

To better understand families’ needs and what kind of supports they want and need, we need to push harder in order to ensure that they 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. And we need to focus research on the effects of systemic and institutionalized racism on families who have members with disabilities.