Are People with Intellectual and Developmental Disabilities Getting the Mental Health Care They Need?

March 5, 2021

Caregivers and service providers of people with intellectual and developmental disabilities (IDD) are likely aware of the challenges faced by people with IDD in obtaining mental health care. Unfortunately, there is little research showing just how widespread this challenge is. The HOPE Lab was quite  excited to see the recent paper by the Mental Health and Developmental Disabilities National Training Center (MHDD NTC) that aimed to identify the current gaps and needs in mental health (MH) services for people with IDD in the United States, using an online survey. The report describes responses from 877 participants from the 48 states.

The participants were divided into two groups: 376 key informants and 501 experienced individuals. Key informants were the people who have an overall view of MH service systems, and experienced individuals are those who know what it is like for someone with IDD to find and use services for MH concerns. For some items, the state was the unit of analysis. To be included based on “in-state agreement,” there had to be at least 5 responses to that particular item from that state. The report addresses a broad range of topics related to mental health services, thus we will highlight a few of the findings and recommendations that caught our attention.

Few Options for Mental Health Services for People with IDD

Experienced individuals were asked where adults with IDD and their families go the first time they have a mental health concern. The highest result from both groups was family doctors or health clinics, and there was no agreement for hospitals for mental illness, MH centers, religious leaders, or residential facilities. The reason for this decision is they are unsure of  where to go and know that doctors are a reliable resource. Key informants were then asked where people with IDD are most likely to go for MH services, and the highest result was community health centers. Even though there were positive comments made, such as training for DD staff and being prepared to make appropriate MH referrals, most states had commented on a general lack of providers or options for MH services to meet current needs.

In terms of choices in MH services, experienced individuals were asked how many options people with IDD had for MH services in comparison to people without IDD. The response options ranged from 0 to 3, where 0 meant none and 3 meant the same. The mean results were below the 1.50 midpoint, reflecting the perception that people with IDD had few options for MH providers compared to people without IDD. For this question, respondents noted a lack of MH services, people being turned away, and money issues.

Lack of Availability and Accessibility Mental Health Service Systems

The survey covered a wide range of issues regarding MH service systems. Key informants were first asked about the availability of basic Mental health services, and general MH services were defined as “serving a range of people with a range of concerns, or not specialized in one type of condition, service, or client.” The results revealed that general MH service providers are not available for people with IDD across all age groups. Only “some” providers of general MH services are able to serve across all age groups and were “slightly available” outside the largest population centers. They also were “slightly well” prepared to meet their needs.

The next concern they were asked about was about the accessibility of general MH services. The mean results for all age groups were below the midpoint, meaning accessibility is less than moderate. It is also important to note that those who have severe disabilities, compared to milder disabilities, reported lower accessibility. Additionally, 19 states commented on language issues being a significant barrier for people who speak a language other than English.

Then, key informants were asked about the availability of typical types of MH services. For children and adolescents, assessment and diagnostic teams were the most available. In the matter of consultation services, there was agreement across 26 states that occupational therapy, psychiatric, psychological, and speech/language consults were available for children and adolescents. Psychiatric consults were available for adults.

The last aspect of mental health service systems key informants were asked was if there were any MH providers in their states who specialized in working with people with IDDs. Between 59% and 64% of the responders divulged that these resources were available across age groups, but it was the lowest for children and highest for adults. Furthermore, 29 states noted that though a responder may have answered “yes” whether an MH provider in their state specialized in working with people with IDD, there were only one too few specialists or specialized programs and not enough to meet current needs.

Long Wait Times for Services

The typical wait time for non-emergency services is 3 to 6 months across all age ranges, but the wait time for first-time non-emergency services is highly changing, flexing from a week up to 3 years. The lowest average wait time is 1.81 months, while the highest average wait time was 2.89 months. From 14 experienced individuals, the “most often mentioned” reason why wait times are so long is due to insurance or ability to private-pay and type of MH service or type of MH provider.

Poor Quality Mental Health Services

In order to assess the quality of MH services in their area, experienced individuals were asked to give letter grades to the types of organizations they experienced. The organization that received the highest result was a C+ for IDD MH agencies. All other organizations received C and D averages, and the lowest results are from emergency rooms and religious leaders. The most common comment was that people are not receiving the proper training needed to help people with IDD.

Charting a Path Forward

The most commonly listed suggestions for improvement were to make a practice more inclusive and accessible and train MH staff to be able to provide care for people with IDD. In order to increase inclusivity, diversity training for existing staff and graduate-level training in care for IDD were listed as useful starting points.

To make MH services more accessible, the paper suggests the use of plain language, having an understanding of the specific difficulties people with IDD face and acting with empathy. The other suggestion that was mentioned was to make the process of finding MH resources for people with IDD and their caregivers easier since current in-state directories were out-of-date and not written in plain language.

Respondents also mentioned a need for MH services to provide resources for caregivers in topics such as advocacy, coping skills, self-care, legal rights, how to obtain services, and types of MH treatment. Overall, mental health services as they are now, are not accessible for people with IDD, and oftentimes, this population is denied or delayed treatment for MH crisis. These suggestions for improvement that were provided are a good beginning for the reformation of MH services to allow people with IDD to easily access beneficial treatment.

Conclusion

In conclusion, a lot of improvements and updates are required to make accessibility easier for people with intellectual and developmental disabilities. Still, with the advent of new technology, availability of information, and people working towards these issues across various platforms, there has been a steady increase in awareness, people are speaking up to help and draw attention to the cause. We can expect more changes and action in the future to develop a better tomorrow in mental healthcare for people with intellectual and developmental disabilities.