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March 25, 2024
Quarterly Opinion
Harold A. Pollack
Kristin Lee Berg
Oct 16, 2024
Jul 31, 2024
Jan 9, 2024
Back to The Milbank Quarterly Opinion
An estimated 7.4 million Americans live with intellectual or developmental disabilities (IDD). For myriad reasons rooted in genetic vulnerability, poverty, social exclusion, and discrimination, many also experience challenges to their mental health. A recent scoping review indicates that 21%-34% of adults with intellectual disabilities experience mental health disorders, with elevated prevalence of severe mental illnesses such as bipolar disorder, psychosis, and schizophrenia.1 Many do not receive timely or appropriate mental health care.2
This care gap is exacerbated by several factors: the tendency for mental health symptoms to be misattributed to IDD (diagnostic overshadowing),3 atypical presentation of such symptoms, communication barriers, and the common practice among community practitioners to refer people with IDD who experience such challenges to specialty clinics that often have lengthy waitlists or are poorly designed to address patients’ mental health needs.2,4
Mental health care gaps are also associated with serious harms, including heightened suicide risk, overreliance on antipsychotic medications, recurrent hospitalizations, criminal-legal-system involvement, and even early death.4 These care gaps also affect family members and caregivers, intensifying financial burdens, emotional distress, and safety concerns that often go unaddressed.5
Such gaps arise from many causes, including poor training of the medical and direct service workforce, discrimination rooted in ableism, and structural defects of the American health care system. No single innovation addresses every challenge. Fortunately, several measures can help.
Standardize and improve disability training for doctors, nurses, social workers, and others in the direct human services workforce. Professional training and curricula across these occupations fall short in preparing practitioners to address mental health needs among people with IDD. General psychiatry board certification criteria lack requisite competencies or clinical experience in IDD. Clinical psychology training programs similarly include minimal IDD training. One analysis indicated that disability topics are mentioned in only 6% of graduate social work courses, with no programs mandating practicum experiences with the IDD population.6,7 This lack of focused training leaves clinicians ill-equipped to identity and treat mental health needs of people with IDD, which may reinforce clinicians’ documented reluctance to treat patients with disabilities.
Equally serious challenges arise in training and job supports for frontline workers in group homes and other settings. Many lack proper training in recognizing symptoms of mental health disorders, and in other matters such as effective de-escalation methods when residents exhibit externalizing behaviors or the use of Smart 911 and other tools for emergency response.
As described by Bowen and colleagues, several measures can reduce such training gaps. Professional bodies can embed IDD competencies into accreditation and licensure requirements, using tools such as the Alliance for Disability in Health Care Education’s Core Competencies on Disability for Health Care Education. Organizations, including the American Speech Language Hearing Association and the American Medical Association, have initiated disability competency training. The Commission on Dental Accreditation now mandates US dental schools to prepare students to treat people with IDD.
The Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program offers another valuable model. LEND programs provide financial and academic supports to graduate students across disciplines to develop IDD-related competencies, and can be expanded to better serve the direct service workforce. Continuing education efforts such as Project ECHO (Extension for Community Health Care Outcomes) use videoconferencing technology to disseminate specialty care training to community practitioners in underserved areas, including training in providing quality care for persons with IDD.
Include people with intellectual disabilities in pertinent intervention trials. Recent analyses indicate that 75% of clinical trials explicitly or implicitly exclude people with IDD. To be sure, the inclusion of study subjects with IDD raises pragmatic and ethical challenges that require careful human subject protections. Less attention is paid to ways that the widespread exclusion of people with intellectual disabilities creates key knowledge gaps regarding medications and interventions. In a welcome response to such inequities, NIH recently designated people with disabilities as a health disparities population, launching new programming and funding to prioritize research and knowledge development in this area.
Expand practical mental health services access for all persons with disabilities, particularly services for Medicaid recipients. Many low-income Americans face financial barriers to mental health care due to underinsurance and shortages of available providers. Shortages of child psychiatrists willing to treat Medicaid patients are particularly acute. As a result, emergency departments see sharp increases in mental health–related visits. Higher reimbursement, alongside more timely payment and reduced administrative burdens imposed on providers, are essential to reduce care barriers facing Medicaid recipients.
Improved care coordination models may also enhance practical access to care. Section 2703 of the Affordable Care Act authorized incentives for states to establish Medicaid health homes. Several states have implemented such programs for individuals with IDD and co-occurring mental health conditions, demonstrating promise in improving access and community integration. Michigan’s managed long-term supports and services program serves more than 45,000 people via county-based Prepaid Inpatient Health Plans (PIHPs). Such models have the potential to improve person-centered care and integrated living for people with IDD. These models also face persistent implementation challenges in reducing behavioral health care inequities. Recent analyses suggest that Medicare Advantage plans are associated with improved access to primary, specialty, and preventive care for persons with disabilities when compared with traditional Medicare. Leveraging similar tools, with more specific focus on mental health services, may expand practical service access for persons who live with IDD.
Needed: A sense of urgency. Addressing the unmet mental health care needs of people with IDD requires financial resources. It also requires a sense of urgency in confronting and reforming ableist policies, institutional frameworks, and societal norms that all-too-easily become embedded within health care training and delivery systems. Implementing IDD training for all pertinent professionals and frontline workers, and promoting inclusive, anti-ableist health policies and research are key to improving health equity and ensuring access for all Americans.
Harold A. Pollack, PhD, is the Helen Ross Distinguished Service Professor at the University of Chicago. He is faculty codirector of the University of Chicago Health Lab. He researches services for severely disadvantaged populations for individuals at the interface between Medicaid and the criminal justice system.
Kristin Berg (AM, LSW, PhD) is an associate professor in the departments of Pediatrics and Disability and Human Development at the University of Illinois-Chicago. Additionally, she is the IL Leadership and Education in Neurodevelopmental and related Disabilities (LEND) Training Director and a PI on the multisite, PCORI funded Behavioral Health Stratified Treatment (BEST) randomized clinical trial.
