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Developmental Disabilities Awareness Month

March is Developmental Disabilities Awareness Month, and we want to take this time to highlight one of the many Rural Institute research projects designed to improve the quality of life for people with disabilities.quote: The project is very important because sometimes people don't realize pople with disabilities are capable of doing things like this

Project spotlight: Partnering with People with Developmental Disabilities to Address Violence

Project summary

The objective of the project was to partner closely with people with developmental disabilities (DD) to develop accessible measures for people with DD and then use those measures to examine the effect of childhood and adult abuse on physical and psychological health outcomes in people with DD. 

Who participated in the project?

Spanning rural areas of western Montana and urban Portland, Oregon, this project involved researchers from three universities, two consultants, research assistants, two community advisory boards (CABs), and four organizations serving people with DD. Members of the CABs were primarily people with DD, but each CAB also included one parent and one provider of services for people with DD. This project was funded by a grant awarded to the University of Montana from the Centers for Disease Control and Prevention under a cooperative agreement with the Association of University Centers on Disabilities.

Why was the project important?

quote: there are different insights with different people like the professionals and the self-advocates and the investigators.  You learn from one anotherThis project included people with DD as research participants and members of the research team. Historically, people with DD have been underrepresented in research for various reasons including faulty assumptions about people’s decision-making capacity, misconceptions about people with DD being unreliable sources of information, inaccessible data collection approaches, and a lack of appropriate and valid measures.

Further, people with DD are at disproportionately high risk of sexual, physical, and disability-related abuse. Although there is evidence of the harmful health consequences of abuse in women, little is known about those consequences in women and men with DD. This study is the first to look at how childhood and adult abuse affects the psychological and physical health of adults with DD. It is also the first to examine the relationship between disability-related abuse (such as the refusal to provide care with essential activities of daily life) and health outcomes.

 

What did the project do?

Using a community-based participatory research approach, people with DD were included as members of the project team in all phases of the research. For example, while preparing the survey the project team adapted questions used in other studies to be easily understood by people with DD. See below for some examples.

 

Adapted Questions for Common Language

Issue

Original

Adapted

Difficult vocabulary

“confide in”

“if you were confined to bed”

“share personal information”

“if you had to stay in bed for many days”

Figures of speech

“things were going your way”

“feeling as if your future will somehow be cut short”

“could not get going”

“things in your life were going well”

“feeling as if your life would end quickly”

“had trouble getting started on activities”

Complicated phrasing

“felt confident about your ability to handle your personal problems”

“avoid thinking about or talking about a stressful experience from the past or avoid having feelings related to it”

“felt you could handle your personal problems”

“tried not to think about, talk about, or have feelings about a stressful experience from the past”

Imprecise response options

a) none of the time; b) a little of the time; c) some of the time; d) most of the time; e) all of the time

proportion visual for survey answers

After developing the survey, the project team recruited 350 people with DD to take part in the study. Participants used a laptop to complete an accessible, audio computer-assisted self-administered interview; project staff were nearby to provide additional accommodations if needed. Each participant answered questions independently in safe, comfortable, and convenient locations of their choosing, providing anonymous data related to their disability, abuse experiences, and health.quote: this is a way for met o not only end that cycle for other people but cope with my own history as well

Results:

The study found that participants who reported abuse (childhood sexual abuse; childhood physical abuse; childhood disability-related abuse; adult sexual abuse; adult mixed abuse, which includes disability-related abuse) were significantly more likely to have psychological and physical health problems as adults. Of those surveyed, 60% had experienced childhood abuse and 66% had experienced abuse as adults. The adverse effects were similar for men and women.

This study is the only known study that examines the relationship between disability-related abuse and health outcomes. Disability-related abuse is not often measured in studies addressing abuse, which tend to focus on physical and sexual abuse. The study found that the experience of disability-related abuse, both as an adult and as a child, had a significant negative effect on both psychological and physical health.

The Rural Institute is a University Center for Excellence in Developmental Disabilities (UCEDD), and since 1978 we have provided education, research, and services to improve the quality of life of people living with intellectual/developmental and other disabilities. While we pay particular attention to the needs of those who live in rural communities, our efforts promote independence, productivity, integration, and community inclusion in rural and urban communities in Montana, the U.S., and beyond.quote: I am learning more so i can help others to advocate for themselves

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