The Journey Toward Recognition as a Medically Underserved Population

In 2004 a member of the AADMD applied for a research grant through the NIH Office of Minority Health and Health Disparities. The grant was focused on surveillance of the health disparities experienced by patients with neurodevelopmental disorders and intellectual disabilities (ND/ID). The application was rejected on the basis that people with ID were “not experiencing health disparities”.

Puzzled by this response from the NIH (after all, only two years prior the Surgeon General of the United States publish a landmark report detailing the health disparities experienced by the population), the AADMD did some investigation. It was discovered that the NIH was relying upon a definition set by the HRSA that defined Medically Underserved Populations (MUPs).

Further investigation showed that the HRSA determined MUPs based on a formula that had been in existence since the late 1970s. Members of the AADMD worked through the formula and determined that the ND/ID population should be considered a MUP. (Click here to read an explanation of the formula and how it should apply to the ND/ID population).

Since that time, changing the MUP status of the ND/ID population has been a top priority of the AADMD. Between 2005 and 2008 the AADMD, with help from Special Olympics, reached out to a number of policy leaders including Senator Ted Kennedy and Senator Tom Harkin. An effort was made to educate key leaders in the federal government in order to correct this problem. This effort resulted in the HRSA Advisory Committee on Training in Primary Care Medicine and Dentistry (ACTPCMD) recommending that the MUP definition be expanded to include people with ND/ID. (Click here to view the ACTPCMD 2006 recommendations). Ultimately, a request was made to the branch designation office of the HRSA (Click here to view the request letter) to consider this population as medically underserved.

Unfortunately, no response was given to the request at that time. However, the advocacy effort did not stop. With the passage of Healthcare Reform, another opportunity arose. A decision was made by the HRSA to establish a committee that would reexamine the MUP formula.

In May of 2010, the AADMD along with a number of other national organizations asked the HRSA to include members on the committee that had expertise in the health of people with ID/DD. (Click here to view the request letter).

In July of 2010, the HRSA announced the selection of its review committee. (Click here to view the members of this committee). Upon review, AADMD members have identified at least 4 members of the committee who have had experience in the ID/DD field.

The AADMD is hopeful that this committee might help the HRSA to finally recognize people with ND/ID as medically underserved. The medically underserved designation could help direct federal research funding, education spending, professional loan repayment programs and Medicaid reimbursement strategies in a manner that would begin to address the healthcare disparities long experienced by this population.

The AADMD and members of ID/DD community will be watching the activities of this committee closely over the course of the next year. If successful, this would mark an important step in the fight for healthcare parity.