People with intellectual disabilities face a variety of barriers when it comes to organizing their health care, and there’s little research to direct health care providers in helping them, according to a new review of studies.
“At a personal level, there are communication problems. They’re not able to communicate their health issues as well as the general population. At a community level, sometimes there are access problems; a lot of people have physical problems also, so they can’t get to the places that provide services,” said Robert Balogh, the lead review author.
Barriers also exist at the health service provider level. “Some of them are not trained to work with that population, are reluctant to see them and they don’t have very good attitudes,” Balogh said.
Balogh, a doctoral candidate at the University of Toronto, and colleagues analyzed eight studies of various interventions designed to deal with the mental health needs of people with intellectual disabilities.
Although the terms mental retardation, developmental disabilities and learning disabilities might seem more familiar than intellectual disabilities, these descriptors vary in meaning from country to country and many use the term “retardation” pejoratively, Balogh said.
According to the American Association on Intellectual and Developmental Disabilities —which changed its name from the American Association of Mental Retardation in 2007 — the preferred term “intellectual disability” refers to significant limitations in intellectual functioning and in a person’s conceptual, social and practical skills.
The review appears in the latest issue of The Cochrane Library, a publication of The Cochrane Collaboration, an international organization that evaluates medical research. Systematic reviews draw evidence-based conclusions about medical practice after considering both the content and quality of existing medical trials on a topic.
Of the eight review studies, conducted in the United States, United Kingdom and the Netherlands, five found no difference between people with intellectual disabilities who received intervention services and a group of peers who received standard care as a comparison group.
Three of the studies, however, did identify interventions that made a difference.
One study found that people with mild intellectual disabilities had shorter hospital stays for severe psychiatric problems if health professionals with smaller caseloads managed their care. In another trial, when participants received grief counseling from mainstream bereavement counselors, their behavior improved, compared to people with intellectual disabilities receiving grief counseling from their caregivers at home.
“Among persons that have a dual diagnosis — intellectual disability with a co-occuring mental health problem — the interventions that were implemented worked, but it depended in which country the interventions were tested,” Balogh said.
For example, a study conducted in the United States discovered that when people with intellectual disabilities and mental health problems received more care in their home environment, they experienced significant improvements in their ability to adapt their behavior appropriately.
When implementing this intervention in England, two studies conducted there showed no effect.
The intervention probably showed a difference in the United States because there is a lack of good mainstream services for people with intellectual disabilities, whereas in England services already exist for people with these disabilities, Balogh said.
“When we talk about intellectual disability, we’re talking about an incredibly diverse population. The complexity inherent in serving this population cannot be overstated,” said Susan Parish, Ph.D., an assistant professor in the School of Social Work at the University of North Carolina at Chapel Hill. She was not affiliated with the review.
In the review, the authors “point to the fact that the gaps in what we know are monumental, and I completely concur with that,” Parish said.
However, like the authors, she noted that readers should keep in mind that it can be problematic to compare the organization of services in a cross-national context.
“There is vast variability within the United States in terms of delivery of Medicaid services. This is a very different system of care than care that is provided in the United Kingdom and the Netherlands, where health care access is a right,” Parish said.
The U.S. health care model expects that patients and health care providers are collaborators, and it requires patients to be self-advocates. That is a role that is extremely challenging for many folks with intellectual disabilities to play, if it’s even possible at all, Parish said.
“Many people with intellectual disabilities are similar to the larger population in the United States. They do not have a usual source of health care, do not have health insurance and are not having their health care needs met,” Parish said.
“There’s much that we don’t know, and this really is a cry for leadership and more research,” Parish said.