Shining the Light on Mental Health in a Population at Risk: Cerebral Palsy and Other Developmental Disabilities

Abstract

The health, both physical and mental, of persons with developmental disabilities is recently coming out of the shadows and gaining attention in research, policy, and practice. In a carefully designed study, Whitney and colleagues (1) report that adults with cerebral palsy (CP), with or without co-occurring developmental disabilities, experience much higher rates of mental health disorders than adults without CP. These findings are important to health professionals, policymakers, and researchers to understand, address, and potentially prevent mental health disorders within the context of promoting overall health. Whitney and colleagues findings significantly contribute to an emerging literature of population-based studies that report that adults with developmental disabilities are at much greater risk for mental health disorders than those without disabilities. Evaluating 2016 health claims data from a national private insurer, they found that 0.84 per 1000 enrollees were diagnosed with CP by a physician. Similar to previous studies (2), a substantial number of adults with CP (31.2%) had co-occurring developmental disabilities. Whitney and colleagues examined mental health disorders across the following 3 groups of enrollees: adults with CP, adults with CP and other developmental disabilities (intellectual disability [13.5%], autism spectrum disorder [2.3%], or epilepsy [24.3%]), and adults without CP. Comparing age-standardized prevalence estimates of mental health disorders separately by sex and group, they reported much higher rates of mental health disorders in the CP and the CP plus developmental disability groups than in the non-CP group. Our calculations of their findings indicate that, compared with adults without CP, those with CP have estimated rates more than 5 times higher for psychotic disorders, 2 to 3 times higher for mood affective disorders, 1.5 to 2 times higher for anxiety disorders, and more than 3 times higher for disorders of adult personality and behavior. Having CP plus another disability results in similar or even higher rates of mental health conditions. Women had higher rates of mood and anxiety disorders than men for both the CP alone and CP plus developmental disability groups. A notable exception was that men with CP alone had higher rates of alcohol- and opioid-related disorders than women and, of note, these rates were higher than the group without CP (4.7% vs. 3.0%). The data in Whitney and colleagues study come from a pool of privately insured adults. As the authors note, persons with disabilities who have private insurance may be less impaired and healthier than those with publicly financed insurance. Yet, Whitman and colleagues findings are consistent with a study by Reichard and colleagues (3) of adults with developmental disabilities enrolled in Medicare fee-for-service, most of whom were dually eligible for Medicare and Medicaid. This group is often regarded as among the most disabled and least healthy in the United States. The 2016 data of approximately 31 million beneficiaries showed that 109320 had CP (3.5 per 1000) and 483595 had developmental disabilities (CP, intellectual disability, autism spectrum disorder, learning disabilities, and other developmental delays) (15.6 per 1000). Among all adults with developmental disabilities in the Medicare sample, rates of diagnosed mental health disorders were high, with percentages of psychotic disorders of 20.4%, major depressive disorders of 28.9%, bipolar disorders of 18.4%, and anxiety disorders of 31.5%. Comparison group data for age-equivalent adults without developmental disabilities were not available because Medicare eligibility is limited to adults aged 65 years or older and younger adults with disabilities. Reichard and colleagues also found that adults with developmental disabilities had high rates of diagnosed hypertension (55.8%), diabetes (32.4%), and chronic kidney disease (26.5%). Similarly, a population-based study of adults with developmental disabilities in Manitoba, Canada, identified an almost 3-fold increase in depression and 4-fold increase in dementia among adults with developmental disabilities compared with a matched nondevelopmental disability sample (4). Social environments are increasingly being recognized as contributors to poor mental and physical health. Environmental contributors are highly relevant to the health of persons with developmental disabilities. People with CP and other developmental disabilities are at higher risk for inadequate access to health care and health screenings; trauma from abuse, neglect, or intrusive therapeutic procedures; poverty related to unemployment and underemployment; and social isolation stemming from communication difficulties, transportation barriers, and limited social opportunities (5). Diagnosis and treatment of mental health conditions in persons with developmental disabilities is challenging. Limitations in their ability to self-report symptoms of mental distress may mean that health care needs are unrecognized and unmet. Health care professionals report feeling unqualified and uncomfortable caring for these patients (6). Recent guidelines from the Substance Abuse and Mental Health Services Administration (7) address inappropriate use of antipsychotic medications for older adults and persons with developmental disabilities. More generally, there is a call to promote training of all physicians in developmental disabilities to increase quality of care as well as to outline disability competencies for health care education (8). In 2017, the American Medical Association adopted Resolution 315 to promote curricula on the care of persons with developmental disabilities (9), and the Liaison Committee on Medical Education is now considering a request from the National Council on Disability for required training on developmental disabilities (10). Shining the light on higher rates of mental health disorders among persons with developmental disabilities has implications for future directions. Health professionals caring for adults with developmental disabilities need to understand the social stressors they experience, differentiate mental health disorders from other contributors to behavioral problems, and participate in person-centered planning for the individual. Developing this expertise may require additional training. Caregivers of persons with developmental disabilities may need support and ways to understand the behavior of adults with developmental disabilities while also being supported in caring for themselves. Policymakers need to be knowledgeable about high rates of mental health disorders among adults with developmental disabilities as they develop programs and policies for developmental disability and mental health services. Finally, more research is needed to understand the co-occurrence of mental health disorders in persons with developmental disabilities. In the absence of a national health care data system or a national health surveillance system that identifies persons with developmental disabilities, U.S. researchers are encouraged to examine health care administrative data sets for defined subgroups of this population in order to build a collective mosaic of the prevalence of developmental disabilities and comorbid conditions and health status.