Feature Issue on Engaging Communities Underrepresented in Disability Research

Clear-language summary

Over the past 60 years, people with disabilities have moved out of large institutions and into homes with their families or smaller group settings because they could receive services to help them live in the community. While we have made a lot of progress in closing down those big places to live, we do not know very much about the housing experiences of people with disabilities who are from racial or cultural groups that have been discriminated against for many generations. Researchers and government agencies have not collected enough information about the race or culture of people with disabilities. We do know that people with IDD with racial and ethnic backgrounds that have historically been discriminated against get fewer services than do those who are white.

We need to know more about the identity of people with IDD living in various kinds of places. What is their race? What is their culture? Are they poor? Do they live near public transportation? Can they get healthy food? These things all matter when we look at whether people with disabilities are living good lives.

We need to try out new person-centered policies and practices to learn how they work for people from racial, ethnic, and cultural groups that have historically faced discrimination. We need to understand how changes in the way Medicaid pays for services will make it easier, or more difficult for people with disabilities who belong to these groups to get the supports they need.

To do this, we need to make sure that people with disabilities from communities that have faced a lot of discrimination are included as both leaders of the research and participants in research.

The RISP project currently reports race and ethnicity data only for individuals residing in large, state-run institutions.Particularly for people with intellectual and developmental disabilities (IDD), the last several decades have seen an enormous shift away from living in large institutional settings to living at home with family members or in smaller group settings. The rise of home and community-based services has been tracked by the University of Minnesota’s Residential Information Systems Project (RISP), which charted the peak in the number of people with IDD in state institutions in the late 1960s at about 200,000 individuals. Today, about 16,200 remain in state institutions, and 17 states and the District of Columbia have closed all of their large, state-run facilities for people with IDD. Nationally, the number of people in intermediate-care facilities for people with IDD has also declined significantly. Today, most people with IDD, whether they get funded supports or not, are living at home with family members throughout their lives. And nearly 60 percent of people who are receiving services from the IDD service system are living at home with family.

Despite the progress in closing institutions, we actually know very little about racial, ethnic, linguistic, and cultural disparities in the living arrangements of individuals with IDD. The RISP project currently reports race and ethnicity data only for individuals residing in large, state-run institutions. Some states don’t adequately collect this data, either. The high levels of missing data make it really difficult – impossible, actually – to examine the disparities that may exist. Are people with IDD living in neighborhoods that are not considered safe, so their freedom of movement is restricted? This is just one example of factors that affect community living, and it creates an important policy issue that we need to address at the state and national levels.

That said, there are some things we do know. We know that the rates of disability and needs for long-term services and support are higher in a number of marginalized populations. We also know, through work by University of California-San Francisco ’s Charlene Harrington and her colleagues, that people in historically marginalized racial and ethnic communities are less likely to receive services than white people, and when they do receive services, they receive fewer of them. The National Core Indicators, meanwhile, has found racial and ethnic disparities among people with IDD in preventive health, community employment, and community living. Clearly, many systemic barriers exist in learning about, qualifying for, and accessing formal IDD services, and people who do receive services often encounter a lack of cultural and linguistic competence in the delivery of those services.

The rates of disability and needs for long-term services and support are higher in a number of marginalized populations

Thus, we need to know more about the race, ethnicity, cultures, and other identities of people living with IDD in various settings. We need to understand their experiences and the disparities they face when accessing and using services and support.

We also need to learn what impact household and neighborhood characteristics have on support needs and outcomes. By this we mean the social determinants of health – what poverty levels, access to transportation and food, for example, mean for the quality of life in households that include people with disabilities.

Next, we need to measure whether and to what extent person-centered practices can improve the lives of people with IDD from historically marginalized groups. We need to create person-centered strategies that are modified in culturally competent ways, and measure their effectiveness.

Studying whether an increase in the number of alternative housing models for people with IDD reduces – or actually increases – racial and ethnic disparities is another vital question. Within these new models, what role does income play?

Finally, what is the effect of evolving Medicaid funding models on access, outcomes, and disparities? We need to look at how states are designing their systems, whether they are using waivers or state plan authorities, or using managed care versus fee for service.

We are in the early stages of understanding disparities experienced by people with IDD who are from historically marginalized communities. It’s important to critically reflect on why this is the case. We need to ask some really tough questions about who is conducting the research and who is informing the research. Are we mentoring and building the next generation of future research chairs, and does that include people with disabilities in general and those from minoritized communities in particular?

We must meaningfully engage with these communities to translate this research into practice as we move forward.