At least one-third of people with intellectual and developmental disabilities (I/DD) also have a mental health disability. I am proud to be one of them and to be able to work on programs at the Administration for Community Living (ACL) that facilitate our meaningful engagement in the community.
As is true for all people with mental health disabilities, treatment and supports that are personalized to our needs, values, and goals, and which respect and uphold our right to make decisions about our lives, are crucial to our community participation and to our health.
However, mental health systems are often not equipped to accommodate people who also have other disabilities, particularly those of us with developmental disabilities, such as autism, cerebral palsy, or fetal alcohol spectrum disorders. As a result, many of us are unable to get the care and support we need.
I know this too well. Six years ago, I experienced a mental health crisis. I entered a hospital emergency department, where I spent days being denied service by every local inpatient and partial hospitalization program because they were not able to handle the potential health risks of my physical disability. I was eventually able to access community-based crisis services, but that is often not the case.
Significant provider capacity shortages can lead to long stays or boarding in inappropriate settings like hospital emergency departments and psychiatric hospitals. In addition, people with co-occurring I/DD and mental health conditions often struggle to the get the treatment and services they need because of siloed services systems. Some address only mental health needs. Others address only needs related to the person’s other disabilities — and often only a portion of those. The systems often offer different types of services or have different policies for similar services. Finding all of the access points and engaging with each one individually to cobble together the holistic services a person needs can be challenging under the best of circumstances. For a person experiencing a mental health crisis, it can be an insurmountable barrier to care.
For youth in the child welfare system, it can be even more challenging. Because there are far too few foster homes available for children and youth with I/DD and mental health conditions, it is not uncommon for them to end up living in a series of temporary placements in inappropriate settings, including hotels, homeless shelters, and even child welfare administrative offices. The lack of a stable home environment and bouncing between the systems, particularly during critical developmental years, compounds the trauma of growing up “in the system” and decreases the likelihood of receiving needed treatment and services.
It’s not surprising, then, that when compared to our peers who have only mental health disabilities or only intellectual/developmental disabilities, those of us with both mental health conditions and other disabilities have poorer health and housing outcomes over the course of our lives, and we are more likely to live in institutional settings.
To best serve people with co-occurring mental health conditions and other disabilities, we must break down these silos and collaborate across systems to provide holistic treatment and support.
That is why ACL created The Link Center. Led by four national organizations representing directors of the state agencies that provide I/DD, mental/behavioral health, and brain injury services, The Link Center focuses on building partnerships and facilitating information-sharing across systems.
The center also works with federal partners to improve support for people with co-occurring disabilities to live in the community. For example, SAMHSA recently partnered with ACL to fund The Link Center’s policy academy on ensuring an inclusive 988 Suicide and Crisis Lifeline response. SAMHSA’s 988 Suicide and Crisis Lifeline provides free, confidential support and referrals to resources to people experiencing mental health crises. As states are building robust 988 systems, there is a growing recognition of the need to ensure these services are available to everyone, including people with I/DD, brain injuries, and people who cannot rely on speech alone for communication. The Link Center’s policy academy is providing technical assistance to six states to support cross-system collaboration that ensures 988 is responsive to community needs.
In addition, the center maintains an online library of resources, models, and promising practices on a variety of topics to support people with disabilities and their families, advocates and allies, policymakers, direct support professionals, and clinical professionals in improving the lives of people with co-occurring disabilities.
For example, The Link Center’s Adaptive Strategies Video Series features adaptations clinicians can make to evidence-based interventions like cognitive and dialectical behavior therapies to better serve people with both mental health conditions and other disabilities.
Another collection of resources aims to improve understanding of the impact of trauma and to support implementation of trauma-informed practices — and to support people with disabilities in managing trauma. Like many of us with developmental disabilities, I have experienced trauma due to a lifetime of invasive medical procedures, and that trauma often impedes the progress of my medical care. People with I/DD are also at increased risk for physical and sexual abuse, restraint, seclusion, and neglect, all of which can cause additional trauma. A unique tool from The Link Center, "Tips to Manage Triggers," was created by and for people with co-occurring disabilities to help them deal with traumatic situations.
I am so fortunate to get to work on programs, like The Link Center, that directly improve outcomes for my community. As we close Mental Health Awareness Month for 2024, I am looking forward to continuing to work with ACL’s partners in the disability networks to continue to improve access to non-coercive, person-centered, and culturally competent mental health care, empowering people with disabilities to seek responsive services and equipping providers with adaptable tools.