Ensuring quality health care for those with intellectual disabilities and autism

The last half century has seen unprecedented progress in the U.S. medical system. Countless genetic mutations have been identified, and scores of formerly fatal illnesses have been eliminated or significantly lessened thanks to unrelenting scientific breakthroughs. The average life expectancy of the American citizen has risen roughly nine years, in part due to new technology, expanded care options and personal commitments to improving health and wellness.

While the future of medicine is bright, and our children will live longer than ever before, we are not doing all we can to ensure quality care for everyone in our society. Health issues, and issues of health care access and disparity, continue for certain demographics in America—including one group that has historically been, and continues to be, unfairly left behind: people with intellectual disabilities and autism.

About 6.5 million American men, women and children are living with Intellectual and Developmental Disabilities (I/DD), including cerebral palsy, Fetal Alcohol Syndrome, Down syndrome, and Autism Spectrum Disorders.

There has been enormous progress over the last few decades on several key challenges facing people with disabilities and autism, from medical advances related to their specific conditions, to a dramatic decrease in stigmas, increased participation in the workforce and civic life, access to health promotion and prevention activities and a better understanding of disabilities.

But according to a study published by the United States Center for Disease Control, the statistics demonstrate just how badly our current system is failing them on the very basics of quality health care. People living with I/DD are nearly four times as likely to suffer from heart disease, 30 percent more likely to be obese, and 60 percent more likely to smoke. Where is the health education and early intervention, specifically targeted to these groups, that has worked well in the general population to dramatically reduce these health care disparities?

Given that this population is at significantly higher risk of a myriad of health problems, early intervention and regular access to convenient and reliable health care is crucial. Unfortunately, people with I/DD are more than twice as likely than the average citizen to not receive care due to costs. In other words, the very group that most desperately needs more care and attention is the same group that is significantly less likely to receive that care. 

This is a tragic set of facts for those with I/DD and autism, and their friends and families—including mine.

When my son Jonathan was born with Down syndrome more than 40 years ago, my life was completely changed, for the better. He has informed my life’s work, and it’s been wonderful to watch as he, and his peers, have seen increasing acceptance and opportunities.

As CEO of the Northeast Arc, I have the good fortune to meet countless amazing people and have worked on many important initiatives aimed at improving the quality of life for those with intellectual and developmental disabilities. That’s why I’m proud to be supporting the Healthcare Extension and Accessibility for Developmentally Disabled and Underserved Population (HEADs UP) Act put forward by Rep. Seth Moulton (D-Mass.), and his colleague Rep. Brian Fitzpatrick (R-Pa.).

This critical piece of legislation directs the Health Services and Resources Administration to officially designate Americans with I/DD as a Medically Underserved Population, as outlined in the 1996 Health Centers Consolidation Act. HEADs UP would immediately improve health care options available to I/DD patients by giving them access to more than 25 federally funded programs.

If passed, Americans with I/DD would be able to benefit from new federal funding for health centers, loan repayment access, training programs, physician incentives to treat those with I/DD, and increased funding and preference for research at federal agencies.

The passage of this bill is an opportunity for Congress to take action and provide concrete and much needed resources for individuals who live in communities across this country. By tackling health issues and access barriers for our I/DD population, we’re strengthening our citizenry and showing care and compassion for some of the bravest, toughest and most wonderful people in America.

After decades of inaction, the time is now. Please join me in supporting this critical piece of legislation, and help America keep its promise to its millions of citizens with intellectual and developmental disabilities.

Jo Ann Simons is the president and CEO of Northeast Arc.