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EMUP Status for the Intellectually & Developmentally Disabled

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The Honorable Jerry Brown
Governor of California
c/o State Capitol, Suite 1173
Sacramento, CA 95814

Dear Governor Brown,

As your constituents, we are writing to ask you to consider the following information and join us in advocating for the intellectually and developmentally disabled (IDD) population of California by submitting a written recommendation that this group be federally recognized as an Exceptional Medically Underserved Population (EMUP). Currently the IDD population cannot be federally designated as a medically underserved population (MUP) solely because they do not meet the geographic criteria despite meeting all 4 of the Index of Medical Underservice eligibility requirements. By not being federally recognized as a MUP, they are unable to receive benefits that other MUPs receive at federal, state, and local levels such as funding, grants, research, and health care professional incentives. The IDD population has successfully advocated against forced segregation involving mandated living in institutions for more than 40 years. Furthermore, current disability legislation protects their right to live as an integrated part of society in whichever area they wish to live. Therefore, as integrated members of society, they will never meet the geographic criteria as a specific population. Additionally, two Surgeon General reports have acknowledged and outlined the health discrepancies faced by the IDD population resulting from a number of problems including the failure to include people with IDD in public health programs, lack of access to primary care, inadequate professional education, and poor access to prevention activities. There is an Exceptional Medically Underserved Population (EMUP) designation under PHS Act Section 330(b)(D) established by P.L. 99-280 that allows populations that face “unusual local conditions which are a barrier to access to or the availability of personal health services” to apply for shortage designations even though they may not satisfy established MUA/P criteria. In order to be considered for this designation, the request must include a written recommendation from the Governor or other CEO of the State, and may include recommendations of other local officials. We have included below additional information that dissects this issue and the solution. We greatly appreciate your consideration to write a recommendation to have the IDD population declared as an Exceptional Medically Underserved Population (EMUP) and are more than happy to help your office with any further information. Thank you.

Sincerely,

Rebecca Lech & Your Fellow California Constituents

 

What is the problem? The intellectually and developmentally disabled (IDD) population cannot be federally designated as a medically underserved population (MUP), thereby rendering them unable to receive benefits at federal, state, and local levels such as funding, grants, research, and health care professional incentives. 

What are the qualifications to be considered medically underserved?  There are two ways that a medically underserved community with lack of access to primary care services can receive federal recognition through HRSA: by either receiving designation as a medically underserved area (MUA) or designation as a medically underserved population (MUP).

  1. Criteria to be considered a MUA is based on having a shortage of primary care health services for residents within a geographic area such as: a whole county; a group of neighboring counties; a group of urban census tracts; or a group of county or civil divisions.
  2. Criteria to be considered a MUP is based on specific sub-groups of people living in a defined geographic area with a shortage of primary care health services.  These groups may face economic, cultural, or linguistic barriers to health care. Examples include, but are not limited to, those who are: homeless; low-income; Medicaid-eligible; Native American; or migrant farmworkers.  

Once a population meets the criteria to be considered a MUA or MUP, designation is then based on the Index of Medical Underservice (IMU) which is calculated based on four criteria:

  1. the population to provider ratio
  2. the percent of the population below the federal poverty level
  3. the percent of the population over age 65
  4. the infant mortality rate  

IMU can range from 0 to 100, where zero represents the completely underserved.  Areas or populations with IMUs of 62.0 or less qualify for designation as an MUA/P. 

Why doesn't the IDD population meet criteria?  The IDD population meets the IMU criteria, but does not meet either MUA or MUP status for only one reason- the geographic criteria. The IDD population has successfully advocated against forced segregation living in institutions for more than 40 years. Furthermore, current disability legislation protects their right to live as an integrated part of society in whichever area they wish to live. Therefore, as integrated members of society, they will never meet the geographic criteria as a specific population.

What can be done about this? There is an Exceptional Medically Underserved Population (EMUP) designation under PHS Act Section 330(b)(D) was established by P.L. 99-280 that allows populations that face “unusual local conditions which are a barrier to access to or the availability of personal health services” to apply for shortage designations even though they may not satisfy established MUA/P criteria. In order to be considered for this designation, the request must include a written recommendation from the Governor or other CEO of the State, and may include recommendations of other local officials.

Supporting Data regarding the financial impact of health care costs for the IDD population in the state of California can be found at the following 4 sources:

  1. Statistics. The Achievable Foundation. Accessed 28 Mar 2017. 
  2. D Braddock. Past, Present, Future in Developmental Disabilities. University of Colorado, Coleman Institute for Cognitive Disabilities. Accessed 28 Mar 2017. 
  3. California, State of the States in Developmental Disabilities. Administration on Intellectual and Developmental Disabilities. Accessed 28 Mar 2017. 
  4. California, State of the States in Developmental Disabilities. Administration on Intellectual and Developmental Disabilities. Accessed 28 Mar 2017. 


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