The Politics of Autism discusses health care, and explains that autism services can be complicated, creating difficulties for autistic people and their families.
Last week, to commemorate the 28th anniversary of the passage of the Americans with Disabilities Act (ADA), Congressman Seth Moulton (D-MA), and Congressman Gregg Harper (R-MS), introduced the Healthcare Extension and Accessibility for Developmentally Disabled and Underserved Population (HEADs Up) Act of 2018.[HR 6611] The HEADs Up Act would designate people with Intellectual and Developmental Disabilities (I/DD) as a Medically Underserved Population (MUP) under the Health Services and Resources Administration (HRSA), opening up access to much needed primary care and specialist services, incentivizing new research, and authorizing more favorable reimbursement rates for providers who treat this population.
“The best way to celebrate the 28th anniversary of the signing of the Americans with Disabilities Act and the 50th Anniversary of the Special Olympics is to take the next step towards ensuring that those living with intellectual and developmental disabilities can live full and happy lives,” said Moulton. “Every person with intellectual and developmental disabilities should be fully integrated into our communities. But right now, we’re failing to give them basic healthcare. This needs to stop. We have the opportunity to create a turning point in the way we care for some of the most medically underserved people in our country. Access to healthcare is a human right, and we have an obligation to make sure that those most in need are getting the care they deserve.”
The “Medically Underserved” designation was created with the passage of the Health Centers Consolidation Act of 1996. Despite years of advocacy and ample evidence that people with I/DD qualify as a MUP, they still have not been designated as one. The designation as a special medically underserved population would open up over 25 government programs within the HRSA and other federal agencies for participation by the I/DD population. These programs include:
“Research shows that individuals with Intellectual and Developmental Disabilities (IDD) experience health disparities, as healthcare providers often do not receive the necessary training to provide proper care to the IDD community,” said Harper. “Increasing opportunities and improving the quality of life for IDD individuals has been a priority for me during my service in Congress. I am pleased to work with Representative Moulton on the HEADs Up Act of 2018 to continue this important conversation.”
- Federal funding for health centers and public health infrastructure such as Federally Qualified Health Centers (FQHC),
- Eligibility to apply for federal funding to develop and operate Community Health Centers,
- Access to loan repayment and training programs in HRSA’s Workforce Development and Training Programs including the national Health Service Corps Scholarships,
- Incentives for physicians to treat this population in the form of higher CMS reimbursement rates for physician services delivered in Health Professional Shortage Areas, a designation closely related to MUP,
- Preference given to research at federal agencies, including the NIH, that studies medically underserved population.
The following groups have endorsed the HEADs Up Act:
“Special Olympics strongly supports legislation, like the HEADs UP Act, that advances the rights, participation and integration of people with intellectual disabilities in communities across America,” said Dr. Timothy P. Shriver Ph.D., Chairman, Special Olympics International. “We thank Congressman Moulton and Congressman Gregg Harper for their championship of this bill. Special Olympics looks forward to continuing its work with Congress to end the stigma, stereotypes, isolation and discrimination that Americans with intellectual disabilities face around access to sport, health and education. The HEADs UP Act will go a long way towards ending well documented health disparities for people with Intellectual and Developmental Disabilities by appropriately designating those fellow Americans as a Medically Underserved Population as a result of so many lacking in the health care they desperately need and deserve.”
- American Network of Community Options and Resources (ANCOR)
- National Council on Disability
- Autism Society
- The National Association of State Directors of Developmental Disabilities Services (NASDDDS)
- Special Olympics
- National Down Syndrome Congress
“Increasing access to dental health services for people with intellectual and developmental disabilities is an incredibly important issue because data overwhelmingly shows the connection between dental health and overall health outcomes, but the issue has flown under the radar for far too long,” said Barbara Merrill, CEO of ANCOR. “We are so grateful that Representative Moulton has asserted himself as a champion for this issue because we know that designating people with I/DD as a medically underserved population will help us make great strides in connecting people with the dental care they need and deserve.”