An Initiative Linking People With Intellectual and Developmental Disabilities to Mental Health Care

“Diagnostic overshadowing means attributing every behavior to a diagnosis,” said Wendy Morris, former commissioner of Kentucky’s Department for Behavioral Health, Developmental and Intellectual Disabilities and senior behavioral health advisor at the National Association of State Mental Health Program Directors. She says this happens a lot to people who have an intellectual disability, developmental disability, brain injury or other cognitive disability. “If someone in a treatment center is exhibiting behavior deemed socially unacceptable, it might be attributed to their diagnosis and not the fact that they’re hungry, have a toothache or are having a bad day like every other human.” The result is that the underlying issue isn’t addressed, let alone resolved. Morris believes The Link Center can help. 

Started in 2022, The Link Center supports state agencies — helping with policy design, service design and coordination — and provides resources for people with an intellectual or developmental disability, their families and other partners. The initiative is funded by the Administration for Community Living and led by the National Association of State Directors of Developmental Disabilities Services. Partners include the National Association of State Mental Health Program Directors, the National Association of State Directors of Developmental Disabilities Services, the National Association for the Dually Diagnosed, and the National Association of State Head Injury Administrators. 

People with an intellectual or developmental disability face long wait times, called psychiatric boarding. This is especially true for young people. A retrospective study published in 2011 reveals the calculus for pediatric psychiatric boarding goes beyond just bed availability, with boarding odds increasing for patients with a diagnosis of autism, intellectual disability or developmental delay. In 2022, the Washington Post published an article on Zach Chafos, an autistic 18-year-old who spent a total of 76 days in a Maryland emergency room waiting for a psychiatric bed. He died 10 days into his psychiatric hospital stay from an epileptic seizure. 

There are various estimates on the percentage of people with intellectual and developmental disabilities who also have co-occurring mental illness. An analysis of 2016 Medicaid data found that 59 percent of beneficiaries with an intellectual or developmental disability had at least one mental health condition, while a meta-analysis found a lower prevalence of roughly 34 percent. However, the National Core Indicators – Intellectual and Developmental Disabilities survey reveals that around 50 percent of respondents take at least one medication for mood, anxiety or psychotic disorders.

According to a study published in the American Journal of Emergency Medicine, among 14,092 pediatric psychiatric visits in North Carolina, nearly 60 percent were young people with neurodevelopmental disorders, including autism spectrum disorder, attention deficit hyperactivity disorder and intellectual disabilities. Forty percent of those with a neurodevelopmental disorder had at least one other psychiatric comorbidity, the study says. 

Not only are people with intellectual and developmental disabilities and mental health challenges more likely to go to the emergency room, but they’re also more likely to return within 30 days of discharge, illustrating a chasm in the continuity of care they receive. 

Mental healthcare facilities frequently exclude patients they deem too difficult or complicated, including those with an intellectual or developmental disability, even if they also have a mental illness. Administrators and staff often don’t feel confident or capable of caring for people with intellectual and developmental disabilities but Morris says care “is more intuitive than we have been led to believe in the field.” Also, there’s been a longstanding myth that people with an intellectual or developmental disability don’t experience trauma nor benefit from mental health treatment, which perpetuates system siloing. Siloes that Morris says are reinforced by payment systems. 

Medicaid home and community-based services waivers allow states to provide long-term care and support to people with an intellectual or developmental disability in the community instead of in an institutional setting. “These waivers include supports — like residential supports and day treatments — that may not be available to people with serious mental illness,” Morris said, adding that, as a result, sometimes people get bounced back and forth between the IDD system and the mental health system to access the service they need. (Even with Medicaid waivers, Morris notes that people with an intellectual or developmental disability often face long waits because there are limited waivers. She says there are hundreds, sometimes thousands, of people on a waiting list to get waiver services in many states.)

That’s why The Link Center has developed a 988 Policy Academy, supporting states in ensuring crisis services and optimal system coordination for children and adults with co-occurring cognitive or developmental disabilities and behavioral health conditions. The academy, funded by the Substance Abuse and Mental Health Services Administration, has six state participants — Georgia, Kansas, Maryland, Ohio, Virginia and West Virginia. “The academy is specifically aimed at making sure their 988 system is going to be responsive to all people in crisis,” said Morris. She hopes the center will be funded to add more states next year.  

In Kentucky, Morris oversaw behavioral health, developmental disabilities and intellectual disabilities in a single department. However, with her current knowledge, she would have taken a deeper dive into policies and procedures. “I would’ve had my director for the IDD division working with us as we implemented 988,” she said, adding that the six states in the policy academy are already ahead of the curve but also asking, “How can we do even better?” 

The Link Center supports the states in bringing together all intersecting partners, including people with lived experience, child protective services and Medicaid. “It’s everybody coming together and saying, ‘If we all work together, we can create synergy, some upstream motion,” she said, adding that siloed systems aren’t going to start functioning collectively unless everyone works together. 

At the helm of the center is its steering committee of people with intellectual disabilities, developmental disabilities, other cognitive disabilities, or brain injuries and co-occurring mental health conditions. “The committee is made up exclusively of people with lived and living experience and they help really drive what we’re doing,” said Morris. Each quarter, The Link Center hosts publicly accessible shared learning groups, which include four sessions on a topic. Each, says Morris, is tailored for a different audience — people with lived experience, family members, direct support professionals and clinical professionals. She says the learning group helps everyone. “We learn as much from the participants in our shared learning groups as they learn from us.”

Working to create parity for people with cognitive challenges, or who communicate nonverbally, and mental health conditions is a win for everyone, she says, adding that society has seen the benefits of curb cuts that were created for people in wheelchairs but, as it turns out, helped everyone. She’s referring to the late ‘80s when dozens of people in wheelchairs chiseled away curb cuts along the sidewalk at the Hollywood Walk of Fame in Los Angeles. They were making a point, says disability rights and suicide prevention advocate CW Tillman. “Without curb cuts, people in wheelchairs end up having to use the street, putting them at grave risk of injury or death,” he told CrisisTalk in 2020. President George H.W. Bush signed the Americans with Disabilities Act into law in 1990, prohibiting disability-based discrimination and mandating equal treatment and access to employment and public accommodations, including curb cuts. 

Morris points out that the unintended benefit of curb cuts is that they help the general population. “It turns out they worked really well for people who were jogging and for parents with strollers,” she said. She’s a fan of a universal design approach for cognitive or developmental disabilities and mental health challenges, designing systems, services and environments to be usable and accessible for all. “That’s good for everyone.”