The term “health disparities” usually refers to differences in health status among various groups of people, based on their race, ethnicity, gender, and/or socio-economic status. Children and adults with disabilities also experience health disparities. And for children and adults from diverse populations with disabilities, disparities in health care are even more prevalent.
Disparities can result in poorer health for the individual, apart from a disability. It is important for families and providers to work together to keep children with disabilities healthy. This tip sheet examines how health outcomes for individuals with disabilities can be improved and how the ACA (Affordable Care Act) can facilitate this.
People with Disabilities and Health Disparities
A recent article in the American Journal of Public Health, Persons with Disabilities as an Unrecognized Health Disparity Population[i] reported on “population-level differences in health outcomes that are related to a history of wide-ranging disadvantages, which are avoidable and not primarily caused by the underlying disability.” For example, children with special needs are even more likely than other children to be overweight and have preventable secondary conditions. Some of these include the development of diabetes, high cholesterol, hypertension, and heart disease.
Some health disparities experienced by children with special health care needs may be due to lack of routine preventive care. The study notes that some preventive measures -- such as lead screenings, blood pressure checks, and ob-gyn care-- do not happen with the same frequency for children and adults with special needs as they do for the general population. This may be because the focus of care for people with disabilities is on their primary condition, so that preventive services recommended for everyone are overlooked, or perhaps seen as lower priorities that don’t justify the time or effort to seek them out.
What Families Can Do
Parents of children with disabilities or chronic illnesses need to be aware of wellness and prevention services that their children need. The Bright Futures Pocket Guide for Families provides guidelines of these services that typically occur at well-child visits. (See Resources.)
By being aware of preventative services, a family can work with their child’s doctor to address their child’s special health care needs and wellness needs. For example, if their child needs bloodwork for their underlying condition, families can ask that recommended screening tests such as lead or cholesterol measurements are done at the same time.
An open and trusting relationship between a family and provider will help both keep tabs on all the needs of the child. While the health services needed by a child with a disability are critical, helping a child develop healthy habits may prevent chronic problems in the future. Families partnering with providers to follow the Bright Futures wellness and prevention guidelines can aid in this, and lead to better health outcomes for children with special health care needs.
In recent years, a “Life Course” approach has been developed by healthcare professionals to keep children healthy. Life Course Theory goes beyond looking just at the biological causes of illness. It looks at all the things that affect our health and well-being. Social, economic, and environmental factors play key roles in determining our health. For example, if we cannot buy healthy food in our neighborhood because it is too expensive or there is no grocery store or community garden, we will have a harder time being healthy. If our community has a lot of pollution, it will affect the quality of our air and water, and our health.
For families, a life course approach means trying to do things to promote health within the family and community. It means providing healthful diets, promoting regular physical activity, keeping our neighborhoods safe, etc. Helping all children to develop healthy habits early in their lives can lead to better health when they are adults.
For more information on Life Course, see http://www.fv-impact.org/about/project-activities/life-course/.
How the ACA Helps
Health and wellness are promoted by the ACA in several ways:
Lauren Agoratus is the parent of a child with multiple disabilities who serves as the NJ Coordinator for Family Voices. She also serves as the southern coordinator in her state’s Family-to-Family Health Information Center.