Feature Issue on Addiction and IDD
Mending Systems, Breaking Barriers
People with intellectual and developmental disabilities who also have mental illness are not able to get the care they need. The Arc and the United Health Foundation are providing grants to state Arc chapters to support them in making mental health services accessible to people with intellectual and developmental disabilities.
The Arc of Oklahoma will use one of these grants to expand treatment opportunities for Oklahomans who have IDD and mental health or addiction needs. Their approach includes targeted mental health first-aid training, media and marketing based on data, and a call to action to connect the systems responsible for providing mental health care.
The work of providing inclusive mental health services calls for changes to policies, funding, and laws to focus on serving the whole person. This is a change and brings together the systems providing medical care with those providing mental health services. Traditionally, these systems were competing and shifting the person back and forth.
Mental health facilities and programs should be more inclusive of all people with disabilities. This includes attention to physical access, and also attention to people’s sensory needs. Mental health providers need to be trained in serving people with intellectual and developmental disabilities, but currently, this kind of training is very hard to find. When people feel welcomed and included, the services can be provided in a person-centered manner.
Too many people with IDD have trouble being admitted into mental health and substance abuse treatment programs, and many are discharged too early. Sometimes, people even need to hide their disability to have a better chance of receiving mental health services.
Federal law updates are putting pressure on healthcare providers to treat people with complex needs fairly. It is hoped that these changes will quickly include mental health and substance abuse.
We need more people with lived experience of disability and addiction, from all ethnicities and cultures, at the table when decisions are being made about laws, funding, and policies that guide mental health services.
Imagine seeking a lifeline in a moment of crisis. You turn to a well-regarded mental health treatment program, only to realize it is not accessible because you have a disability. Too many people are finding themselves in this situation. How could this happen in a system built on the philosophy of health, inclusion, and accessibility? With today's high rates of co-occurring mental illness within the intellectual and developmental disability (IDD) community, how can our systems of care continue to ignore an entire population in crisis? The fields of disability and addiction services must do better.
The Arc and the United Health Foundation are attempting to tackle this very issue with the recent announcement of a $2.5 million partnership aimed at tackling the mental health crisis for those with IDD. This partnership will award 10 chapters of The Arc with funding to build local solutions aimed at expanding access to mental health and substance use services for those with IDD, breaking down antiquated barriers that separate disability and health services. Those awarded will focus outreach, training, and marketing efforts around inclusion, breaking down stigma, and driving integrated and accessible treatment options in mental health and substance use systems.
A program participant at The Arc of Oklahoma.
Working in the mental health and substance use treatment field for nearly 22 years, I have seen wonderful advancements in care, access, treatment, policy, funding, and training. However, one specific area that continues to lack is that of true integration of care and parity for those with co-occurring IDD and mental illness or substance use. Until IDD specifically impacted my family over 9 years ago with the birth of my youngest child, as a clinician, I had very limited training on IDD issues, nor did I understand that traditional mental health systems were failing our IDD population with mental health needs. I did not understand how much a person or family must advocate for fundamental right protections, a seat at the table, or basic treatment and accommodations for simple services. I knew that our mental health system must shift because those we serve are complex, individualized, and evolving.
As a board member of The Arc of Oklahoma, a grant awardee, I have a personal mission to shift systems in my state so that those in need receive equitable and consistent care. The Arc of Oklahoma is concentrating on enhancing treatment opportunities for Oklahomans with co-occurring IDD and mental health or addiction needs. This effort includes targeted mental health first aid training, stakeholder engagement, media and marketing centered on data, and a call to action with operational steps for system evolution beyond disconnected service structures.
System improvements should be automatic for such a compassionate and person-centered system focused on mental wellness. Many stakeholders continue to struggle with the need to shift the systems, policies, funding, and statutes toward serving the whole person comprehensively, rather than volleying the person between frequently competing systems, which ultimately leads to more trauma, expense, decompensation, and failure. Our providers continue to require more training surrounding IDD and other disabilities in addition to their ongoing routine clinical mental health training, but these integrated training courses are difficult to find and not always appropriately structured. Facilities build more inclusive environments of care to accommodate those with disabilities of various types, which ultimately would serve all in an enhanced manner. Think of this as building a ramp so all could enter a building vs. only providing stairs, which a select few could utilize. Policies and training should focus on admission criteria specifying that if a person meets their admission criteria, their disability status should not then disqualify them.
Simple accommodations to policies, communication devices and language choices, integrative clinical training, and sensory consideration in the treatment spaces would increase success for the individuals, reduce distress, and connect them with hope and health. When someone feels seen, heard, and welcomed for who they truly are, it meets the very essence of the person-centered and trauma-informed approach in mental health. Too many individuals with IDD end up with barriers to admission into mental health and substance use treatment services, and if admitted into care, find themselves prematurely discharged for behavioral manifestations of symptoms. Diagnostics is another critical area of focus. Often the disability or the mental illness overshadows one another, or the person or family feel compelled to hide or minimize the disability to increase their chances of attaining mental health services.
Promising regulation updates within the U.S. Department of Health and Human Services Rehabilitation Act of 1973, Section 504, Nondiscrimination on the Basis of Disability in Programs or Activities Receiving Federal Financial Assistance, will prohibit healthcare providers from making treatment decisions based on flawed beliefs and biases held toward the disability community. This is another example of long overdue, yet positive advancements in system integration and equity for those with complex conditions and disabilities. There is significant hope that these updated regulations would bleed into the mental health and substance use treatment systems swiftly and with parity between health and mental health systems. These updated regulations were finalized on May 1, 2024 and went into effect on July 8, 2024, and should be disseminated, trained on, and monitored for compliance.
We need more individuals who have lived experience and personal insights into the needs of our IDD community at the table making decisions about law, statutes, funding, and policies, in addition to highly trained experts. We need more professionals with specialized and integrative training, compassion, and a mission focused on treating the person in an inclusive manner. As both a professional and a parent of a child with a disability, we need more champions with this unique blend of perspective involved in key decision-making roles. We need bold and courageous leaders who are ready to make the necessary decisions for change, advocating as though their loved one’s quality of life depended on their efforts and actions.
Advocating for my son over the years has been eye-opening, specifically as it relates to cultural inclusion into care and Tribal voices in disability. Culture must be a consideration when focusing on system shift. As a Cherokee Nation Tribal citizen, I have worked within Indian Country in the areas of autism, IDD, and mental health and substance use. There is a tremendous amount of action taking place throughout Indian Country focused on cultural inclusion of our citizens with disabilities and providing quality and rooted systems of support and care. Some of those efforts culminated in an updated toolkit with the National Indian Council on Aging (NICOA) Understanding Disabilities in American Indian & Alaska Native Communities Toolkit Guide, the creation of Black Feathers podcast in partnership with the Administration for Community Living (ACL), and the formation of the Cherokee Nation Autism Task Force. All of these Indian Country disability efforts are inclusive of mental health services and bringing to awareness the rates of co-occurring conditions and necessary integration of systems of care.
We cannot any longer allow broken systems to persist. There is a clear and evident mental health crisis within our disability community. Our time for action is now. Advocate and drive equitable service change as though lives depend on it, because they do. My son’s life does. I will not give up.