By Guest Blogger Dr. Coleen Boyle, PhD, MShyg, Director, CDC’s National Center on Birth Defects and Developmental Disabilities
When the landmark Americans with Disabilities Act of 1990 (ADA) was enacted on July 26th of that year, its stated goals were to promote equal opportunity, full participation, independent living and economic self-sufficiency. Although employment, transportation and telecommunications receive much of the publicity, the ADA is a platform to good health for every person with a disability who wishes to live, work, play and go to school alongside others in his or her community.
As we celebrate the 23rd year of the ADA, I want to recognize it as a platform for the inclusion of people with disabilities in federal efforts related to health and health care. In my role as the director for the National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention (CDC), I see first-hand how inclusion of people with disabilities into mainstream health programs and services can improve the health of Americans living with disabilities. When children and adults with disabilities receive needed programs, services and health care across their lifespan, they can reach their full potential, experience independence and contribute to their communities.
Disability is part of the normal human experience – anyone can be born with a disability, or develop one at any point in his or her life through congenital conditions, chronic disease, injury or aging – and most likely, we all have a loved one or friend who has a disability. Having a disability does not – and should not – equal poor health. Unfortunately, there are major health gaps that make it more challenging for a portion of the estimated 37 million to 56 million people with disabilities in the United States to live the healthiest life possible.
CDC has embraced the spirit of the ADA. We operate on the principle that people with disabilities are best served when they are included in mainstream public health activities, and that appropriate accommodations must be provided when there are barriers that limit participation. In 2010, CDC Director Dr. Tom Frieden established an inclusion initiative to bring disability into CDC’s mainstream public health activities. In December 2012, he stated, “If we’re not inclusive, we end up with two huge problems: one is that we’re unjust to the disability population and the second is that we’re not being as effective as we could be as an organization; we’re not taking advantage of everyone’s capacity.”
To effectively include people with disabilities in public health programs, we need accurate data on the number of individuals with disabilities and their health status and needs. Federal data collection efforts have been strengthened, since all health surveys sponsored by the Department of Health and Human Services must now include standardized data on disability status. In 2011, CDC released the first-ever CDC Health Disparities and Inequalities Report, which includes an assessment of disability-related health disparities. Currently, we provide a Disability and Health Data System based on a CDC health survey.
We need to increase awareness of the health gaps that exist and the appropriate accommodations that are needed for people with disabilities to access health programs and services. From our research, we know that people with disabilities are less likely to get the preventive health care services they need, and are more likely to engage in behaviors that are unhealthy (e.g., smoke, physical inactivity). People with disabilities are also at higher risk for multiple chronic conditions, injuries and increased vulnerability during disasters. As challenging as that is for individuals with disabilities, their caregivers and their families, it also translates to a financial cost that impacts our health care system. Health care costs associated with disability were estimated in 2006 at about $400 billion per year, or about one-quarter of all health expenditures.
Children and adults with disabilities need to see health professionals for the same reason that anyone does – to be healthy. And it’s important for health professionals to treat the person, not the disability. This means making sure that people with disabilities have access to quality health care – including being able to get to and through the front door of a clinic, use an accessible exam table or mammography machine and even get weighed.
In addition to routine care, children with disabilities may also have specialized health needs that must be addressed at critical times in their lives. These conditions must be identified early and children must be connected to services and resources as soon as possible. Preparing these children and their families for successful development and transition to adulthood means making sure they have access to services that help a child learn and improve or regain skills and functional abilities that may not be developing typically.
I’m pleased to report that CDC is doing its part as the nation’s health protection agency to help children and adults with disabilities live healthy lives. In addition to our national data and awareness activities, we are focused on assuring that people with disabilities are included in emergency preparedness and response efforts – there are too many tragic stories of people with disabilities being left out and left behind. We work with states to ensure that individuals with disabilities are included in ongoing state disease prevention, health promotion and emergency response activities. We partner with national organizations to improve the lives of individuals living with disabilities by delivering health information, education and consultation to the public.
People with disabilities need public health programs and health care services for the same reasons anyone does — to be well, active and a part of the community. The work of CDC honors the intent of the ADA as a critical piece of civil rights legislation for people with disabilities. If you are someone with a disability, I encourage you to live a healthy life. If you don’t have a disability, I encourage you to help increase access to important health programs for people with disabilities by using our resources and tools. In closing, I leave you with some personal stories of people with disabilities.
Coleen Boyle serves as Director of the National Center on Birth Defects and Developmental Disabilities (NCBDDD) at CDC. Dr. Boyle joined NCBDDD’s Division of Birth Defects and Developmental Disabilities in 1988, first as Section Chief and later as Branch Chief and Division Director. In 2001, Dr. Boyle was named the Associate Director for Science and Public Health for CDC’s newly created National Center on Birth Defects and Developmental Disabilities (NCBDDD). In October 2004, she was appointed the Director of the Division of Birth Defects and Developmental Disabilities.
Dr. Boyle received her MSHyg in biostatistics and PhD in epidemiology from the University of Pittsburgh, School of Public Health, and she completed postdoctoral training in epidemiologic methods at Yale University.