Today, Reps. Brian Fitzpatrick (PA-01) and Seth Moulton (MA-06) introduced the Healthcare Extension and Accessibility for Developmentally Disabled and Underserved Population (HEADs Up) Act of 2019.

The HEADs Up Act would direct the Health Services and Resources Administration to designate people with Intellectual and Developmental Disabilities as a Medically Underserved Population. The HSRA is the government agency that advocates for people who are cut off from quality health care by economics, geography or a medical vulnerability.

“Everyone deserves access to quality health care, especially those with intellectual and developmental disabilities who have been underserved for too long,” Fitzpatrick said. “This legislation will ensure those in the IDD community receive the care they deserve and incentivize physicians to provide critical services to them. I’m proud to join Congressman Moulton to introduce this measure to help those with intellectual and developmental disabilities live healthy lives.”

“America can do better for its citizens with intellectual and developmental disabilities,” Moulton said. “We are a great nation because everyone has something to contribute, because we take care of each other, and we help our friends and neighbors make the most out of the opportunities they are given. That means expanding health care to those among us who require the most complex care so Americans with Intellectual and Developmental Disabilities and their families can write their own destinies.”

“People with intellectual disability and complex medical needs will require care throughout their lives. While some of these 5 million individuals can live fully integrated lives in the community with minimal supports, 2-3% have complex medical and behavioral needs, which can result in lengthy complicated health care visits. The HEADS Up Act will change that by providing funding for and incentivizing individualized wraparound primary and specialty that will improve care quality and reduce costs through a reduction in ER visits and hospitalizations,” said Tine Hansen-Turton, President and CEO of Woods Services in Langhorne, PA.

The change in designation would give Americans with Intellectual and Developmental Disabilities access to new primary care and specialist services, incentivize new research, and authorize more favorable reimbursement rates for providers who treat Americans with Intellectual and Developmental Disabilities.

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 Intellectual and Developmental Disabilities (I/DD) qualify for the designation, Congress still has not provided these Americans with it.

The designation as a special medically underserved population would open up more than 25 government programs within the Health Services and Resources Administration and other federal agencies for participation by the I/DD population.

These programs include:

• 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 National Institutes of Health, that studies medically underserved population.

A wide range of champions for the Intellectually and Developmentally Disabled endorsed Fitzpatrick’s and Moulton’s bill. They include:

• American Health Care Association
• American Network of Community Options and Resources (ANCOR)
• American Physical Therapy Association
• American Podiatric Medical Association
• Autism Self Advocacy Network
• Autism Society of America
• Autism Speaks
• Developmental Disabilities Nurses Association
• Franciscan Children's
• FRAXA Research Foundation
• Massachusetts Developmental Disabilities Council
• Massachusetts Down Syndrome Congress
• Massachusetts General Hospital
• National Association of State Head Injury Administrators (NASHIA)
• National Down Syndrome Congress
• National Down Syndrome Society
• Partners Healthcare
• SourceAmerica
• Special Care Dentistry Association
• Special Olympics International
• The Achievable Foundation
• The Arc of Massachusetts
• The Arc of the United States
• The MENTOR Network
• The National Association of Councils on Developmental Disabilities (NACDD)
• Woods Services