People with intellectual and developmental disabilities (IDD) face issues with not having access to the health care they need throughout their lifespan. There are millions of children with IDD across the country. In some states, families wait up to 20 years to get access to behavioral health services. Sadly, people with IDD struggle to get good health care, and many individuals also lack access to dental care. In fact, less than 70% of dentists have treated people with disabilities. Those with IDD are at higher risk for oral diseases due to service gaps, low income, and other factors. This can cause heart problems and worsen health. Additionally, some research shows that adults with IDD may die 24 years earlier than those without IDD.

These disparities have led to a push to classify people with IDD as a special medically underserved population (S-MUP). The HEADs UP Act stresses the need for this formal designation. As an S-MUP, the IDD community would get more attention and resources in health care planning and access. There would be more funding and training for federal health programs, and it would also require investing in medical sub-specialties that support people with IDD. The bill would fund scholarships and loan repayments for providers who care for people with disabilities.

The Arc’s policy team has worked to provide feedback on the bill to uplift the needs of people with IDD. We have worked with coalitions to submit comments to agencies on oral health and health care for people with IDD. Achieva, a chapter of The Arc, held a roundtable about the HEADs UP Act. It included medical experts, like Dr. Adiaha Spinks-Franklin, and Congressman Seth Moulton.

Dr. Spinks-Franklin is immediate past-president of the Society for Developmental and Behavioral Pediatrics (SDBP) and one of 758 board-certified developmental-behavioral pediatricians. During an interview with us, she shared, “If we don’t act, we will see a worsening behavioral health crisis. It will cause a huge drop in school attendance, especially for Black, Indigenous, and Brown boys.  But there is hope if we pass this bill. We can increase the number of developmental-behavioral pediatricians. We can address the current behavioral health crisis by providing more funding for providers and resources for people with IDD.”

Dr. Spinks-Franklin leaves us with this: “Residencies should teach that caring for people with disabilities is normal. People should stop viewing disability as something to cure. We should have people trained to take care of all people instead of a subset.”

Make sure your members of Congress know what this bill means to people with IDD. You can take action here.