Federal lawmakers are looking to make doctors and other health care services far more available for people with intellectual and developmental disabilities.

A bipartisan bill introduced late last month in Washington would for the first time designate people with intellectual and developmental disabilities as a “medically underserved population” and qualify this group for additional resources under more than two dozen federal programs.

Health care experts say passage of the legislation would increase access to medical and dental care, reduce health disparities and improve specialized training for medical providers.

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“It’s exciting to see it starting to get some traction,” Dr. Stephen Sulkes, a developmental-behavioral pediatrician and president of the American Academy of Developmental Medicine and Dentistry, said of the proposal. “This is going to encourage health care providers to pay attention to this population and learn what it takes to provide appropriate care, to be good listeners, to be understanding and responsive in ways that will enhance care.”

The so-called MUP designation would allow doctors to receive higher payments from Medicare and Medicaid for seeing patients with intellectual and developmental disabilities. It would also offer repayment of student loans for health professionals who serve this population and provide funding for research on topics affecting this group, according to U.S. Reps. Seth Moulton, D-Mass., and Gregg Harper, R-Miss., who sponsored the bill known as the Healthcare Extension and Accessibility for Developmentally Disabled and Underserved Population, or HEADs Up, Act of 2018.

Research shows that people with intellectual and developmental disabilities have a hard time finding competent providers, have a higher rate of chronic conditions like cardiovascular disease and are less likely to receive routine health screenings, according to a report by the Autistic Self Advocacy Network.

The MUP designation was created to identify groups with too few primary care providers, high infant mortality, high poverty or a high elderly population. Since the 1960s, some groups have been automatically included by law, including migrant workers and people who are homeless. But for others to qualify, they must live in the same neighborhood or geographic area.

“The issue here is that a generation ago, people with IDD were institutionalized,” said Sulkes, a professor at the University of Rochester. “When they were institutionalized, they got all their health care in the institutions.”

So now, with deinstitutionalization, in order for people with disabilities to be included, the law would have to be changed to reflect their widespread presence in communities across the country.

“The only reason that the IDD population has not been designated as a MUP is because they do not live together in a geographic area,” Moulton and Harper wrote in a letter to their Congressional colleagues. “To go back to forced segregation, in order to receive the benefits of being designated a MUP, would be to require the community to undo all of the hard work that has been done.”

Among the benefits of the MUP designation would be training programs and student loan forgiveness for health professionals who choose to focus on caring for patients with intellectual and developmental disabilities.

David Ervin, chief executive for The Resource Exchange, a nonprofit service provider that is collaborating with the University of Colorado to train medical students to better treat patients with intellectual and developmental disabilities, said student loans are a barrier to attracting doctors to the field.

“So many of our folks (with intellectual and developmental disabilities) are on Medicaid or dually eligible and whether we like it or not, that is not a way to repay your medical school loans,” Ervin said. “This gives a pathway.”

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