By Kelly Mayer-Rebello, JHBL Staff Member
Despite the passage of federal legislation over the last fifty years – the Developmental Disabilities Assistance Act, the Individuals with Disabilities Education Act (IDEA), the Rehabilitation Act, and the Americans with Disabilities Act – inequities and barriers to healthcare for individuals with developmental disabilities (DD) persist. The most prevalent issues are limited access to health coverage, denial of health services, inadequate or inappropriate treatment, unnecessary institutionalization, and involuntary sterilization.
Accessing healthcare coverage and services is a challenge for most people in the United States. For people diagnosed with a disability, there are additional barriers to overcome such as physical inaccessibility to provider locations (lack of ramps, adjustable furniture, accessible bathroom facilities), preconceived stereotypes and prejudices, inadequate numbers of trained specialists, lack of geographically accessible facilities, and policies and practices that don’t accommodate specialized communication needs. The extent of the disparity in access not only puts these individuals and their families at a higher risk for adverse health outcomes, but also creates economic, academic, and social-emotional challenges.
In the United States, more than 6 million people are diagnosed with a DD and the prevalence is on the rise. DD is defined as a severe, chronic disability of an individual that is attributable to a mental and/or physical impairment, likely to continue indefinitely, that results in functional limitation of major life activities. Compared to individuals without a disability, individuals with DD typically require more frequent medical care, including more prescription medications, medical equipment, and adaptive devices. In addition, they have a greater use of home health care, specialized programming, and therapies. Twenty-eight percent of individuals with DD reported that these medical necessities were not covered by their insurance – compared to 7% of those without disabilities.
Although developmental services are covered by most private insurance carriers and Medicaid plans for medically complicated subscribers, policies are less generous in supporting those with isolated developmental delays or disabilities. In the absence of a concurrent medical diagnosis, no financial incentive exists for medical providers to treat DD. This is concerning when considering the increasing prevalence of developmental disabilities in the United States. The most common types of delays – speech, cognitive, and motor-based developmental disabilities – have shown growth estimates of 40 to 60 percent. Additionally, advances in understanding the developmental impact of social determinants – poverty, low education, trauma, racial and ethnic discrimination – have brought more “at risk” children into the health care system to be monitored and treated.
With a growing number of individuals who need clinical support, the resources are static, at best. The delivery of clinical care is volume-driven with discrepancies in reimbursement rates, favoring the elderly. The healthcare system continues to focus funding, staffing, resources, and policy efforts on medically complex patients at the end of their lives.
Individuals with DD often require medical providers who specialize and have experience examining, diagnosing, and treating individuals with disabilities. In general, but especially for individuals living outside of a metropolitan area, there is an unmet need for disability-competent physicians who will take the time to listen and give value to the health and wellness of their patients with disabilities. Those specialists who are equipped to provide specialized care are working beyond capacity to keep up with the growing numbers and complexity of children with DD. This compounds the issue by leading to high turnover rates due to professional burnout. These consistent staff vacancies lead to long waiting lists for services people with DD need for everyday life. Even if a medical provider is found, insurance providers can refuse to refer members with disabilities to an out-of-network specialist, insisting on the use of an in-network provider who lacks the expertise, or even familiarity, of working with DD.
Fifty percent of medical and dental students are identified by their deans as “not competent” to treat people with DD due to lack of curriculum time, lack of faculty experience, and lack of clinical training on the subject. To improve access to appropriate health care providers, the mismatch between the traditional training and what is needed to address the specialized needs of individuals with DD needs to be reconciled.
Adequate healthcare coverage and medical care providers are significant contributors to the problem. Other barriers include language fluency, cognitive and verbal limitations of patients, the absence of multidisciplinary/multi-agency collaboration, and lack of transportation and personal support to travel to appointments.
As the prevalence of DD continues to rise, the population will become increasingly underserved unless we begin to close the gap between legal theory and the application of nondiscrimination laws and medical best practice in clinical settings. The health care system must be transformed to focus on the social determinants of developmental vulnerabilities, the expansion and integration of community-based services, the development of coordinated care systems, new models of payment, and legislative and financial support to resolve inequities in the access to health care services.
Disclaimer: The views expressed in this blog are the views of the author alone and do not represent the views of JHBL or Suffolk University Law School.
Kelly Mayer-Rebello is a third-year law student enrolled in the accelerated program at Suffolk Law School with an interest in health and family law. She is pursuing a concentration in Health and Biomedical Law with an academic focus in Family and Juvenile Law. Prior to law school, Kelly earned her undergraduate degree at Quinnipiac University and worked as a pediatric occupational therapist and health care executive.
Sources:
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https://www.cdc.gov/ncbddd/developmentaldisabilities/about.html
Health Needs and Use of Services Among Children with Developmental Disabilities
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Do Children with Developmental Disabilities and Mental Health Conditions Have Greater Difficulty Using Health Services Than Children with Physical Disorders?
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Children with Special Health Care Needs Face Challenges Accessing Information, Support, and Services
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Needs: Coverage, Affordability, and HCBS Access