This post was written by Melissa Bourne, NACCHO Health and Disability Program Fellow.
March is National Developmental Disabilities Awareness Month, first proclaimed by Ronald Reagan in 1987. Certain days of March are dedicated to the awareness of specific developmental disabilities, such as Down Syndrome (March 21) and cerebral palsy (March 25). This is a time to celebrate the abilities and recognize the contributions of people with developmental disabilities. This is also a time to better understand the wants and needs of this population, and to acknowledge the barriers they may face. This blog, written in March, is intended to raise awareness of healthcare inequities experienced by adults with developmental disabilities and discuss the implications for local health departments.
Developmental disability (DD) is a broad umbrella term that includes intellectual and/or physical impairments that are present at birth or develop during childhood, that cause functional limitations that typically require ongoing healthcare services and support. The prevalence and lifespan of people with DD is increasing, which means more adults with DD who are experiencing the effects of aging and developing chronic health conditions. Most adults with DD live in the community and many may rely on assistance from others.
Although individuals with DD are living longer, they often experience health disparities. Health disparities are broadly defined as population-specific differences in health outcomes; these differences may or may not be inequitable. Adults with DD are more likely than adults without DD to experience multiple chronic health conditions, which occur along with their DD. These health conditions may look different in adults with DD than with adults without DD, making the conditions challenging to recognize and treat. The increased incidence, earlier onset, atypical presentation, lack of diagnosis and treatment of these conditions are health disparities that can reduce quality of life for adults with DD.
The health disparities experienced by adults with DD are exacerbated by inequities in healthcare. Healthcare inequities are differences in the way populations access, experience, and receive healthcare, which can lead to preventable differences in health that are unnecessary, unfair, and unjust. Three common themes of healthcare inequities experienced by adults with DD include knowledge deficits, communication challenges, and poor quality of care.
- Knowledge deficits: Adults with DD and their caregivers may lack knowledge about needed care. Poor health literacy leads to lack of awareness, limited understanding, or decreased adherence to treatment recommendations. Healthcare providers typically lack education about DD, which can lead to misconceptions or bias as well as high risk for errors in diagnosis or treatment.
- Communication challenges: The limited verbal abilities and cognitive impairments of some adults with DD can result in behaviors that lead to frustration and anxiety for both patient and provider, hampering assessment and treatment.
- Poor quality of care: Adults with DD typically require more healthcare services than the general population and have higher rates of hospitalizations and preventable complications. Healthcare providers are often uncomfortable caring for adults with DD, while adults with DD often feel stigmatized and fear treatments. Refusals or delays in care are common and access to care is frequently problematic. Health promotion and preventive care are often inadequate; many adults with DD do not receive cancer screenings, dental care, immunizations, and psychiatric services.
What can local health departments do to help reduce healthcare inequities among adults with DD?
- Raise awareness of the healthcare inequities experienced by adults with DD. The National Association of Councils on Developmental Disabilities (NACDD) provides resources for raising awareness, including specific resources for promoting Developmental Disability Awareness month. https://www.nacdd.org/ddam1/
- Improve knowledge by providing training and resources about the unique health needs of adults with DD. NACCHO’s Health and Disability 101 Training is an online resource for local health departments that includes information relevant to the needs of people with developmental disabilities. https://www.pathlms.com/naccho/courses/5037
- Collaborate with community partners to improve the availability and accessibility of healthcare services for adults with DD. NACCHO has a directory of community-based organizations serving people with disabilities, many of which serve people with developmental disabilities. https://www.naccho.org/uploads/downloadable-resources/Fact-Sheet_Directory-CBO.pdf
- Promote inclusion of adults with DD in public health planning, programs and services. NACCHO provides many resources for disability inclusion, including a MAPP Resource Guide for Disability Inclusion. https://www.naccho.org/programs/community-health/disability
- Value contributions of adults with DD by actively seeking their opinions and creating safe spaces for them to live and work in the community. As disability advocates often say, “Nothing about us, without us!”
Let’s use National Developmental Disability Awareness Month to highlight healthcare inequities faced by the DD community and make positive changes to strive for health equity.