The history of health and health care for people with ID is shaped by our nation’s history of institutionalization and discrimination. Beginning in the mid-19th and early 20th centuries, people with ID were often institutionalized in large state-operated facilities, or otherwise kept isolated from mainstream society. The creation of public special education, downsizing and closure of state operated facilities, and the disability rights movement during the late 20th century transformed the health care system to one that largely supports people with ID in their communities, increasingly in their own homes and with family or friends. As individuals with ID are more often supported in their homes and communities, they increasingly receive their acute and primary health care services in the mainstream health care delivery system.
While deinstitutionalization has overall improved the health and life expectancy of people with ID, disparities remain. Advancements in community-based services have improved quality of life for people with ID, but the provision of adequate health care services remains a concern. Research has found that individuals living in more restrictive environments, including community-based group homes, have a higher likelihood of receiving preventive exams than those living on their own or with family or friends.
Population health data reflect continued disparities. Adults with ID are at greater risk of hearing and vision impairments, cardiovascular disease, obesity, seizures, mental health and behavior problems, poor oral health, and poor general fitness. According to the National Council on Disability (NCD), people with intellectual and developmental disabilities (IDD) face a “constellation of health and health care disparities, including inadequate health and wellness promotion and inconsistent access to high-quality health care services.” NCD notes that the rate of adults with IDD face significantly higher rates of obesity (35%) than adults without IDD (21%). The Autistic Self-Advocacy Network (ASAN) notes that individuals with IDD experience higher instances of cardiovascular disease, chronic pain, and diabetes than people without disabilities. ASAN also describes research finding that people with IDD tend to live sedentary lives, being much more likely to report engaging in no exercise than adults without disabilities, a trend that begins in childhood.
Disparities in health outcomes stem in part from disparities in access to health services including:
- Lack of cognitively accessible material which contributes to low health literacy among people with ID
- Low numbers of primary care providers with training or experience in serving people with ID. 81% of medical students report no clinical training on treating patients with ID and 66% report insufficient classroom instruction
- Pervasive stereotypes or misinformation about people with ID, including that they feel less pain, do not engage in sexual activity, or cannot (or should not) live long and healthy lives
- Negative past experiences with health care providers, resulting in people with ID being less likely to seek care
- Inadequate supports for care transition from pediatric to adult health care systems
- Insurance payments that do not consider additional time required, both appointment times and additional care coordination needed by people with ID
- Narrow networks that do not include providers with experience serving people with ID
- Lack of access to dental care, contributing to health problems stemming from poor oral health
Insurance Coverage for People with Intellectual Disability
People with ID receive insurance through three primary sources: Medicaid, Medicare, and private insurance, however data on actual coverage rates is limited. Data collected on coverage sources for people with ID is generally limited to those who are eligible for coverage on the basis of their disability. Nearly all studies recognize that many more people with ID are eligible through other eligibility pathways, such as income or age, and that more people with Medicare and Medicaid are enrolled in the program than eligibility data suggests. As a result, advocacy efforts to improve health care access and outcomes for people with ID cannot be limited to those eligible on the basis of their disability, or to one form of coverage. Download the complete resource to learn more.