Second HRSA Request Letter

American Academy of Developmental Medicine and Dentistry
PO Box 5035
Louisville, KY 40205

June 10, 2010

Via Email

Mary Wakefield
Administrator
Health Resources and Services Administration
Department of Health and Human Services
Parklawn Building Rm. 14A-11
5600 Fishers Lane
Rockville, MD  20857

Kathleen Sebelius
Secretary
Department of Health and Human Services
Parklawn Building Rm. 14A-11
5600 Fishers Lane
Rockville, MD  20857

Re:                  File Code #HRSA-1

Dear Ms. Wakefield and Secretary Sebelius:

We send this letter in response to the Notice of Intent to Form a Negotiated Rulemaking Committee (the “Committee”) by the Health Resources and Services Administration (the “HRSA”) as required by Section 5602 of Public Law 111-148 and as described in the May 11, 2010 edition of the Federal Register.  Our comments are specifically focused on the request for comment in relation to Section III, “Affected Interests and Potential Participants.”  We note, in particular, the HRSA’s express goal to identify criteria used for Medically Underserved Population (“MUP”) designations to reflect underservice indicators that are currently relevant and available. 

We represent organizations supporting people and communities broadly viewed to be medically underserved, and we submit for your review information supporting our conclusion that the Committee include, among its members, medical and disability experts with knowledge and experience with the health needs and the disparities of care received by adults with neurodevelopmental disorders.

The support we set out herein and in the supporting documentation referenced here and sent previously to the HRSA Branch Designation Officedemonstrates that the population with neurodevelopmental disorders experiences unusually high needs in addition to access barriers within areas where the general population has sufficient resources.  There are more than 10 million individuals with neurodevelopmental disorders in the United States, which includes six million with intellectual disability.  This group also includes those with Cerebral Palsy, Autism Spectrum Disorder, Down syndrome, Fragile-X, Fetal Alcohol Syndrome, Spina Bifida, and hundreds of other rare medical conditions that may result in developmental disability.  As a group, this population experiences barriers to accessing quality medical and dental services.  This lack of access has resulted in a high degree of unmet needs and poor health outcomes in comparison to the general population.¹

Despite the documented recognition of health care educators expressing a desire for training specific to the needs of adults with neurodevelopmental disorders, there is a nearly universal lack of formalized training of physicians, nurses, dentists, and other health and allied health professionals devoted to the needs of this population.   This lack of training ensures that even if individuals can surmount the significant barriers to access, concerns over the quality of health care delivered will remain. This training gap exists notwithstanding health care educators recognizing a need for training specific to the health issues of adults with neurodevelopmental disorders.²

Despite the significant evidence documented by Yale University¹, Special Olympics², and the Surgeon General of the United States³; as well as a recommendation in 2008 by the HRSA Advisory Committee on Training in Primary Care Medicine and Dentistry⁴ to designate this population as medically underserved, this population has failed to be designated as a Medically Underserved Population by HRSA. The conclusion we have reached as groups supporting persons within the neurodevelopmental disorder community, that such persons constitute a medically underserved population, has also gained objective support in studies by organizations not specifically tied to persons with neurodevelopmental disorders. 

While we applaud the creation of the Committee and we note the broad skill sets sought by the HRSA in designating the members of the Committee, it is our belief, based upon long involvement in the neurodevelopmental disorder community and in the medical care the members of this community have received, that the background of general practitioners, no matter how skilled, or data analysts, no matter how experienced, cannot adequately inform the Committee as to the day-to-day requirements of this significantly underserved population.

Our organizations support the advice of the 2008 HRSA Advisory Committee, that people with neurodevelopmental disorders should be considered a medically underserved population.   We understand that as part of the recent Health Care Reform Act, it is the intent of Congress to reevaluate the definition of "medically underserved."   If these criteria are to be restructured under article 5602 (a) (b) (c) of the Health Care Reform Act of 2010, specifically via the committee HRSA is seeking to create in order to establish the new definition of “medically underserved,” we strongly recommend that medical and disability experts with knowledge and experience with the complex needs and healthcare disparities experienced by adults with neurodevelopmental disorders serve as representatives on the negotiated rule making committee.

If you have any questions, or would require further detail, please contact Dr. Matthew Holder at mattholder@aadmd.org or 602-625-3805.

1. Horwitz S, Kerker B, Owens P, Zigler E. The Health Status and Needs of Individuals with Mental Retardation. Washington, D.C., Special Olympics Inc., March 2001.
2. Corbin S, Malina K, Shepherd S. Special Olympics World Summer Games 2003 Healthy Athletes Screening Data. Washington, D.C., Special Olympics, Inc., February 2005.
3. U.S. Public Health Service. Closing the Gap: A National Blueprint to Improve the Health of Persons with Mental Retardation, February 2001. Washington, D.C., 2002.
4. The Role of Title VII, Section 747 in Preparing Primary Care Practitioners to Care for the Underserved and Other High-Risk Groups and Vulnerable Populations. Sixth Annual Report of the HRSA Advisory Committee on Training in Primary Care Medicine and Dentistry. Rockville, MD, March 2008, 80 pp.

Sincerely,

National Organizations
Representative
Position

Alliance for Disability Healthcare Education
Ken Robey, PhD
Interim Chair

American Academy for Cerebral Palsy and Developmental Medicine
Deborah Gaebler-Spira, MD
President

American Academy of Developmental Medicine and Dentistry
Seth Keller, MD
President

American Association on Health and Disability
Roberta Carlin, MS, JD
Executive Director

American Association on Intellectual and Developmental Disability
Margaret Nygren, EdD
Executive Director & CEO

American Board of Developmental Medicine
Matthew Holder, MD, MBA
Chairman

American Network of Community Options and Resources
Renee Pietrangelo, PhD
Chief Executive Officer

The Arc of the United States
Peter V. Berns
Chief Executive Officer

Association of University Centers on Disabilities
George Jesien, PhD
Executive Director

Autism Society
Jeff Sell, Esq.
Vice President, Public Policy

Autism Speaks
Peter H. Bell
Executive Vice President for Programs and Services

Coalition to Promote Self Determination
Serena Lowe
Executive Director

Developmental Disabilities Nurses Association
Mary Alice Willis
Executive Director

Exceptional Parent Magazine
Joseph Valenzano, MBA
President

Family Medicine Education Consortium
Laurence Bauer
Executive Director

Family Voices
Brooke Lehmenn, MSW, Esq.
Public Policy Co-Director

FRAXA Research Foundation
Katie Clapp, MS
President

International Foundation for Chronic Diseases
Sunil Wimalawansa MD, PhD, MBA, FRCP, DSc
Chairman

Joseph P. Kennedy Foundation
Steven M. Eidelman
Executive Director

Matheny Institute for Research in Developmental Disabilities
Ken Robey, PhD
Director

NADD: An Association for Persons with Developmental Disabilities and Mental Health Needs
Robert Fletcher, DSW
CEO

National Academies of Practice
David Itzkoff, DDS, FADPD, DABSCD
Chair Dentistry

National Association of Councils on Developmental Disabilities
Mike Brogioli
CEO

National Association of State Directors of Developmental Disabilities Services
Nancy Thaler
Executive Director

National Down Syndrome Society
Madeleine Will
Vice President of Public Policy

Physician Parent Caregivers
Santi K. M. Bhagat, MD, MPH
President

Society for Developmental and Behavioral Pediatrics
Leonard Rappaport, MD, MS
President

Special Care Dentistry Association
Kevin T. Hendler, DDS, FASGD, DABSCD
President

Special Olympics, Inc.
Stephen Corbin, DDS, MPH
Senior Vice President, Community Impact Division

United Cerebral Palsy
Chris Thompson
Vice President and General Counsel