Improving access to behavioral health care for people with intellectual and developmental disabilities
Despite being at higher risk for experiencing mental health challenges, people with intellectual and developmental disabilities, or IDD, often face barriers in accessing the behavioral health care they need.
IDD refers to a group of conditions that impact a person’s physical, intellectual, and emotional development from birth. These types of conditions vary widely — some include Down syndrome, autism spectrum disorders, and others.
Many people with IDD also have a co-occurring psychiatric condition. Some estimates range from 39% to 52% of people with IDD also have a mental health condition, which translates to up to 2 million people nationwide. This is even more prevalent for people with autism spectrum disorders: up to 70% of people may also have a mental health condition.
Misconceptions about whether people with IDD can benefit from therapy, as well as strict admission requirements based on IQ score for certain treatment facilities, can prevent people with IDD from getting the care they need. Providers also lack training and experience in working with this population, which can lead to difficulties in identifying emotional or psychiatric disorders in people with IDD.
Following Healthy Minds’ recent publication exploring barriers to care for people with IDD, in this analysis we propose solutions to ensure Oklahomans with IDD have the same access to mental health treatment as any other patient, including better training of clinicians and improved coordination of services.
Key takeaways
- Accessing mental health care can be challenging for people with IDD because of stigma, a lack of professionals and facilities with experience treating this population, and inadequate or disconnected community supports.
- To expand access to behavioral health care for people with IDD, Oklahoma needs to grow its behavioral health workforce and require early and continuing training on the unique needs of people with IDD.
- Oklahoma needs better inter-system coordination among the agencies and organizations that serve people with IDD, especially around crisis care. The state should fully adopt the START program model as a collaborative crisis prevention and intervention framework for people with IDD and co-occurring mental health conditions.
- New initiatives, including an urgent recovery center for youth with IDD in northeast Oklahoma and grant funding to improve access to mental health care for this population, are important steps in ensuring people with IDD have equal access to behavioral health care.
Targeting stigma
People with IDD need the same access to mental health care as anyone else. Unfortunately, people with these conditions can be misunderstood by mainstream health professionals, first responders, and family and caregivers, perpetuating stigma and bias. This can lead to misdiagnosis and mistreatment, which in turn, can cause an increase in dysfunction and disability, higher rates of psychiatric comorbid conditions, behavioral problems, and overrepresentation of people with IDD in criminal justice and forensic settings.
One effective way to combat stigma is through educational initiatives that target the public, health care professionals, and policymakers. This can take the form of online courses, workshops, or educational campaigns to improve understanding about intellectual and developmental disabilities and mental health. When people are more informed about these conditions, they are less likely to hold negative attitudes or beliefs about individuals with these disabilities.
It is also important to ensure opportunities for higher education, employment, and other supportive programs for people with disabilities. Many people experience a decline in mental health after graduating from high school, and social isolation can worsen this.
Sheltered workshops are one example of a way to help people with disabilities integrate into the community through skill-building, as well as job training and placement. Increasing access to employment and community participation can help people with IDD avoid social isolation and experience better overall well-being.
Early and continuing training for providers around IDD
Improving care for people with IDD will require better training and knowledge among mental health professionals. However, in schools and training programs, IDD education is typically optional, limiting the number of future clinicians who will gain exposure to working with people with IDD.
To ensure comprehensive IDD education, Oklahoma's medical schools should focus on creating formal training curricula. Several grant opportunities exist to support such initiatives: the U.S. Department of Health and Human Services recently announced more than $8 million in funding to train primary care medical students, physician assistant students, and medical residents to work with people with IDD. Additionally, the NICHE-Medical project is offering $15,000 grants to medical schools nationwide to implement curriculum enhancements that address gaps in medical education regarding patients with IDD.
In addition to formal training programs, workforce development initiatives are an important part of building a pool of providers competent in working with people with IDD. These initiatives should include the ongoing development of direct service professionals who specialize in providing behavioral, communicational, and functional support for people with IDD. In one example, the eLearning training modules offered by the Texas School of Mental Health, providers are asked to examine challenging behavior from a new perspective. The training emphasizes the importance of understanding the "whole person" and the various factors that influence how people with IDD think, feel, and act.
In Missouri, the state’s Missouri Alliance for Dual Diagnosis task force works with providers and the state mental health department to ensure providers are knowledgeable and trained to treat co-occurring IDD and mental health disorders.
Oklahoma has a growing need for behavioral health professionals across licensure types and specialties. Implementing solutions to grow the state’s workforce — like through Healthy Minds’ recommendations for expanding and improving training pathways — along with early and continuing IDD education for professionals, Oklahoma can ensure better access to care for people with IDD.
Better coordination of services
A lack of collaboration and communication among the agencies and systems that serve people with IDD create challenges for them and their caregivers. Intersystem planning can support better service options and funding for mental health services for people with IDD.
Some essential planning principles include treating co-occurring disorders as multiple primary disorders, providing services and supports based on individual needs and preferences, and involving the patient and their family as full partners in the planning process. In a coordinated, connected system of care, individuals with co-occurring IDD and mental health challenges can receive the appropriate and effective services and supports they need through early identification and intervention, comprehensive assessments, and coordinating services at all levels. These best practices not only alleviate burdens for people with IDD and their caregivers, but they are cost-effective long-term.
Oklahoma faces a growing need for renewed interest and investment in interagency collaboration among the systems that serve people with IDD. A common practice in intersystem collaboration is to begin by establishing a task force made up of representatives from various systems, such as mental health and IDD systems, state regulatory bodies, service providers, family representatives, and advocacy groups. This task force should evaluate the service delivery system's strengths and weaknesses and work towards improving the weaknesses while leveraging the identified strengths.
The Missouri Alliance for Dual Diagnosis (MOADD) is a shining example of collaboration between the state's mental health department and mental health providers to better serve people with IDD. The MOADD task force, made up of a diverse, interdisciplinary group of professionals, has produced a comprehensive guidebook for providers that serves as a roadmap for best practices in serving people with IDD and mental health conditions. The task force’s work has evolved over time, including convening an advisory committee to the state mental health department and hosting annual summits. Missouri's proactive approach to developing providers' knowledge and providing support for individuals with IDD and mental health diagnoses sets a commendable standard for other states in the region to follow.
The Arc of Oklahoma, the state’s chapter of a national organization that focuses on promoting and protecting the human rights of people with IDD, was awarded part of a $2.5 million grant to improve mental health and substance use services for people with IDD. The Arc of Oklahoma is one of 10 chapters across the U.S. to receive grant funding, which the organization will use to focus on breaking down barriers between disability and health services, promoting inclusion, providing mental health aid training, implementing marketing campaigns to challenge preconceptions, and advocating for system changes to move away from fragmented service models.
Through these initiatives, The Arc of Oklahoma aims to improve treatment options and outcomes for Oklahomans with IDD, ensuring equitable, timely, and effective mental health and substance use treatment for all people, regardless of disability.
Effective leadership, staff, treatment, and staff training are crucial to ensuring positive outcomes for individuals with IDD. By sharing resources and working together, the mental health and IDD sectors can create a comprehensive service delivery model that is accessible, available, and suitable for everyone.
Crisis care and the START model
Our current, siloed system creates challenges in addressing the mental health needs of individuals with IDD, especially when a person is in a mental health crisis. One model that breaks down these silos and promotes better inter-system coordination is the START (Systemic, Therapeutic, Assessment, Resources, and Treatment) model.
START is a crisis prevention and intervention framework to serve people with IDD and co-occurring mental health conditions. It works by creating linkages between different institutions that serve people with IDD, creating cross-system crisis prevention and response plans, and providing therapeutic coaching and training. START teams also provide 24-hour crisis response and consultation services.
Currently, five states have certified START programs, and five more have at least one program under review for certification. Oklahoma is among 15 other states considered a START network partner, which means the state works with National Center for START Services to provide training, education, and system evaluation services to professionals who serve people with IDD and mental health challenges.
Data from the center’s most recent impact report shows the success of the START model: people enrolled had a significant reduction in use of emergency services and declines in admission rates for inpatient services. Of 2,786 crisis calls across the START Network, 75% resulted in people staying in their community. In total, 3,512 people with IDD and mental health conditions were served across the network, and 71% experienced a reduction in mental health symptoms.
Individuals with IDD often exhibit challenging behavioral issues that require a high level of care, support, and resources to ensure their safety and the safety of those around them. To help address crisis situations for this population, Oklahoma should fully adopt a certified START program with the help of community-based providers, such as certified community behavioral health clinics, or CCBHCs. These clinics already have the expertise to provide 24-hour crisis response, including mobile crisis teams, emergency crisis intervention services, and crisis stabilization. It is essential to develop an inclusive mental health system that can serve all individuals, including those with IDD.
The state can look to examples of START programs in Texas and North Carolina — Tarrant START Services and NC START, respectively — which each aim to create a support network that can respond to crises at a community level and support individuals with co-occurring IDD and mental health conditions so they can remain in their homes and communities while also avoiding costly emergency services.
In Oklahoma, organizations are recognizing the gap in mental health crisis care for people with IDD and launching new service offerings. In northeast Oklahoma, CREOKS is establishing a new specialty urgent recovery center (URC) for youth with IDD, a significant step towards expanding crisis services for this group.
Like hospital emergency departments or medical urgent care centers, URCs are a place for anyone to walk in and receive mental health care in a crisis. CREOKS’ new URC in Sapulpa will offer family support, therapy, and case management, focusing on de-escalation and providing resources to families and caregivers to prevent future crises. The new facility represents a significant step forward in enhancing stabilization and access to mental health and substance use care for children with IDD.
In central Oklahoma, the future opening of a behavioral health center at Oklahoma Children’s Hospital OU Health in Oklahoma City will expand the state’s capacity to serve children with mental health needs. The family-centered facility will have 72 beds for short-term stabilization and long-term care, as well as specialized units for patients with autism and neurodevelopmental differences.
Peer support
In addition to appropriate care from clinicians, people with IDD can benefit from support and guidance from peer support specialists. A peer support specialist can provide understanding that other mental health professionals may be unable to offer. They have first-hand experience and knowledge of the unique challenges and needs of people with IDD, which can help them bridge the communication gap between individuals with IDD and their mental health providers.
Organizations looking to develop peer programs and employ peer mentors with IDD can benefit from Optum's peer mentor training program. Optum collaborates with national and local organizations to create and test innovative peer programs that empower individuals with disabilities to make informed choices and ensure their safety. The program covers various topics such as mental health and substance use, the Americans with Disabilities Act, as well as abuse, bullying, and neglect. Oklahoma can look to North Carolina as an example – it is one of the few states that have piloted a certification program with Optum for individuals with IDD to become peer support specialists.
Conclusion
Initiatives to expand access to mental health care for people with IDD, like the Arc of Oklahoma’s work through its grant funding, as well as new service offerings for people with co-occurring IDD and mental health needs represent important steps toward equitable health care access for this population.
Fully breaking down the barriers that prevent people with IDD from accessing appropriate behavioral health care will require a multifaceted, multi-sector approach. Providers must be trained and competent in working with people with IDD, and the many agencies that serve this population must better communicate and collaborate. By strengthening providers’ education and training around IDD, enhancing collaboration within the system, and strengthening crisis services, we can ensure access to quality care for all individuals, regardless of disability.
