Members - do you have an idea for a project?

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Here's just a small sampling of the projects we've developed over the years.

Medical School CURRICULUM

Project Name: NCIDM (National Curriculum Initiative in Developmental Medicine)

MUP Advocacy

Project Name: MUP (Medically Underserved Population) Coalition

Developmental Disabilities Community Asks to be Recognized as Medically Underserved

A coalition of over 30 national health and advocacy organizations dedicated to people with developmental and intellectual disability (fka mental retardation) has asked the federal government to officially recognize people with neurodevelopmental disorders as a medically underserved population (MUP).

Neurodevelopmental disorders are a group of conditions that adversely effect the development of the brain and nervous system and include: autism, Down syndrome, cerebral palsy, fetal alcohol syndrome, fragile X syndrome and hundreds of other conditions that can result in intellectual or developmental disability.

"Individuals with neurodevelopmental disorders have the some of the poorest health outcomes in the nation.  The level of health neglect that we see, clinically, is unbelievable," said, Dr. Matthew Holder, the Executive Director of the American Academy of Developmental Medicine and Dentistry, a national professional association formed to improve the health outcomes of people with neurodevelopmentaldisorders and intellectual disabilities, through patient care, teaching, research, and advocacy.

Though the federal government has been designating certain populations as medically underserved since the 1970s, people with neurodevelopmental disorders have never received this designation.  The federal government uses the MUP designation to help attract more physicians to a given patient population through special programs like tuition reimbursement, incentivized research programs and special Medicaid rates.   According to the coalition, based on the federal designation formula used by the Health Resources Services Administration (HRSA), people with neurodevelopmental disorders should qualify.  "We are just asking the Federal government to recognize what many of us, including the Surgeon General of the United States, have been documenting for years," said, Dr. Holder.

For further information contact Dr. Steve Sulkes, MD, Steve_Sulkes@URMC.Rochester.edu or telephone 585-506-7312.

Spread the word: Inclusion

Project Name: Spread the Word: Inclusion

Over the past several years there has been a clear national and social effort to try to change perceptions about those with Intellectual and Developmental Disabilities (IDD). Too often, individuals with IDD have been marginalized, segregated, and treated like second-class citizens. The formal removal of the R-Word from federal and state language has gone far, but the term and its associated negative stereotypes still permeates deeply within the healthcare community.

Making this issue even more tragic is that there exists great levels of health disparities to this group, including poor access, quality of care, lack of training, research, and reimbursement of healthcare services. We are beginning a national campaign in partnership with Special Olympics that will emulate the current Spread the Word campaign but will have a focus towards our healthcare colleagues. Our effort will be about respect, values, and caring. We need your help. We are forming a core committee of those who wish to provide ideas, time, and support to this worthy initiative.

We invite you to learn more, read the AADMD Statement on R-Word Usage and find more resources here.