Increasing Access to Care for Individuals with Intellectual and Developmental Disabilities in New York
This document was prepared by Sally Dreslin, Executive Director of the Step Two Policy Project and Adrienne Anderson, Senior Policy Fellow at the Step Two Policy Project.
We want to thank Steve Sulkes at the University of Rochester Medical Center and Nafin Harun at the Center for Health Workforce Studies at the University at Albany for adding their subject matter expertise to the development of this Issue Brief.
Summary
In September 2023, the National Institutes of Health (NIH) designated people with disabilities as a population that experiences health disparities. This is a welcome step forward in recognizing and addressing the impacts that long-standing challenges to accessing care, unmet health-related social needs, and systemic bias and stigma have had on the health and well-being of this population, compared to their peers without disabilities. The designation paves the way for an increased focus on people with disabilities, including their intersection with other populations, such as racial and ethnic minority groups, in NIH-supported research. There is, however, more that can be done to pursue health equity and increased access to care for this population, specifically for individuals with intellectual and developmental disabilities (IDD). Congress could pass bipartisan legislation (that, as of this publication, includes five New York co-sponsors) that would add individuals with a developmental disability to the category of “special medically underserved populations” in the Public Health Service Act. This would make grants available to health centers to support them in providing services for individuals with IDD and would designate individuals with IDD as a population to be included in health professional shortage area (HPSA) designations. They would join “migratory and seasonal agricultural workers,” those who are homeless, and “residents in public housing” in federal statute and be able to benefit from a variety of Federal programs designed to increase access to primary care providers, dental providers, and other services. A more expedient approach to increase access to primary care providers and other services for individuals with IDD in New York is to 1) maximize the utilization of the currently designated shortage areas and populations within the State, which opens Federal programs in the designated geography for all clinicians and facilities, regardless of the specific populations they care for, and 2) identify additional geographic areas that are not yet designated as medically underserved areas/populations or HPSA shortage areas, but include a significant population of individuals with IDD who experience difficulty accessing care, and pursue a designation of Medically Underserved Population (MUP) for individuals with IDD in those areas. If those areas do not meet the scoring requirements with the standard criteria as explained below, then New York can pursue an Exceptional Medically Underserved Population designation from the Health Resources & Services Administration for those areas and population.
Background
On September 26, 2023, the National Institutes of Health (NIH) designated people with disabilities as a population experiencing health disparities. The designation was made by the National Institute on Minority Health and Health Disparities (NIMHD) following a one-year-long workgroup process that produced a Final Progress Report on September 20, 2023. The process began with a request to NIMHD from the National Council on Disabilities and the Administration for Community Living in late 2021 and early 2022 to “… designate persons living with disabilities as a health disparities population and include research on disabilities in the same manner that research on racial and ethnic populations, those of people with lower socioeconomic status, sexual and gender minority groups, and rural populations is classified by NIMHD.” NIH also released a notice of funding opportunity, “… to support novel and innovative research that examines and/or intervenes on the underlying and multilevel causes, pathways, and factors adversely impacting the health and well-being of persons with disabilities at the intersections of race and ethnicity, and socioeconomic status.” Additionally, the NIH issued a Request for Information that calls for feedback on a proposed update to the NIH Mission Statement to include the language, “… to optimize health and prevent or reduce illness for all people,” in place of, “… to enhance health, lengthen life, and reduce illness and disability.” This update, according to the RFI, replaces language that, “… could be interpreted as perpetuating ableist beliefs that disabled people are flawed and need to be ‘fixed’.” These actions on the part of the NIH represent a significant effort to identify, understand, and address the health disparities experienced by people with disabilities, as defined broadly, and to explicitly include them in NIH-supported research.
Focus on People with Intellectual and Developmental Disabilities
People with intellectual and developmental disabilities (IDD) have disorders that may affect multiple body parts or body systems, start in childhood, and impact the arc of an individual's physical, social, and/or emotional development.1 Multiple co-morbidities, biological issues related to syndromes, and challenges accessing healthcare services contribute to an earlier onset of chronic health conditions for individuals with IDD.2 Research reinforces the fact that individuals with disabilities, defined broadly, face barriers and bias when trying to access healthcare services. Specifically, Lagu et al. describe the factors related to,
… physical inaccessibility of care settings;11,12 inadequate accommodations for communication needs;6,7 and pervasive ableism in medicine,13–15 including physicians’ implicit and explicit biases, attitudes, and behavior toward people with disabilities.16–18
Despite the difficulties of accessing high-quality healthcare, adults with intellectual and developmental disabilities have been living longer and healthier lives over the past 20 years. However, disparities in overall health outcomes compared to individuals without IDD, and even within subpopulations of those with IDD, persist. For example, as Figure 4, provided by the Population Reference Bureau, demonstrates below, there are wide differences in the length of life of individuals with IDD compared to those without IDD, and within the population of individuals with IDD, the intersection with race and ethnicity results in even wider differences.3 In addition to disparities across race and ethnicity, we also see disparities within the heterogeneity of intellectual and developmental disabilities.
In New York, the data demonstrate a similar finding, but also show that New Yorkers with IDD are not living as long as their peers in other states.
As the American Academy of Developmental Medicine and Dentistry has stated, individuals with intellectual and developmental disabilities, “… have some of the poorest health outcomes in the nation. The level of neglect that we see, clinically, is unbelievable.”
Shortage Designations
Qualification and Process for Designation
Recognizing disparities in health outcomes that result from the inaccessibility and availability of healthcare services, the Health Resources and Services Administration (HRSA) developed a process to formalize various shortage designations. Shortage designations identify an area, population, or facility experiencing a shortage of healthcare providers. Shortage designations identified by HRSA include: Health Professional Shortage Areas (HPSAs) that are stratified as Geographic, Population, and Facility HPSAs and for Primary, Dental, and Mental Health Care; Maternity Care Target Areas (MCTA); Medically Underserved Areas (MUA); Medically Underserved Populations (MUP); and Governor’s-Designated Secretary-Certified Shortage Areas for Rural Health Clinics. A geographic area receives a single medically underserved designation and/or a single health professional shortage designation –geographic areas do not have multiple types of overlapping MUA/P or HPSA designations. Each shortage designation is based on a score calculated from a set of specific criteria, and the designation facilitates access to various Federal programs that guide the distribution of resources meant to address accessibility and availability of healthcare services. These Federal resources include the National Health Service Corps, Nurse Corps, HRSA Health Center Program, IHS Loan Repayment Program, CMS HPSA Bonus Payment Program, CMS Rural Health Clinic Program, and the J-1 Visa Waiver program.
A Medically Underserved Area or Population (MUA/P) refers to a specific area or population that has limited access to primary healthcare services as defined by its score on the Index of Medical Underservice (IMU). If an area or population scores below a defined threshold on the IMU, the area or population then qualifies for designation as an MUA/P. An area or population can score between zero and 100, with 62 as the designation threshold. The four scoring criteria used to calculate the IMU include the 1) ratio of providers per 1,000 population, 2) percent of population at 100% of the federal poverty level, 3) percent of population age 65 and over, and 4) infant mortality rate. Designation as a MUA/MUP is used by the Federal Health Center Program, the J-1 Visa Waiver program, the Doctors Across New York Physician Loan Repayment and Physician Practice Support Program, and the Nurses Across New York Loan Repayment Program.4 These programs support efforts to expand the primary care workforce working with any population in the designated geographic area. MUAs, as with all shortage designations, have a shortage of healthcare services within a specific area that is constituted by an entire county, a grouping of neighboring counties, a group of urban census tracts, or a group of county or civil divisions.5 MUPs are specific population subsets within a geographic area, that have a shortage of primary care services due to circumstances such as economic, cultural, or language barriers. The geographic area that can be shortage designated, though, cannot include greater than 250,000 individuals, so there is no opportunity to designate a specific population statewide, as medically underserved.6 Additionally, areas or populations designated as medically underserved cannot overlap, so any existing designations must be taken into account as new ones are considered.
Impact of MUA/P Designation
The Health Center program, as explained in §254b(3)(c) of Title 42, Chapter 6A of the Public Health Service Act, presents the opportunity for a variety of grant awards to federally-defined health centers that serve an area or population designated as Medically Underserved, dependent on federal funding, for the purposes of planning and delivering services. Funding opportunities include planning grants to acquire and lease physical space and equipment, for example, or to conduct a needs assessment, engage with the community, or develop care networks. Other grant award opportunities for health centers serving designated populations include supplemental grants that can be used towards improving the quality of care delivered, for example, to implement evidence-based models of care, workforce configuration, care coordination, and telehealth and other technology integration. There are also operating grants that may be available to support building and construction costs, training, and management of the health center.
The J-1 Visa Waiver program allows federal agencies and state health departments to access physicians from outside the U.S. Physicians with J-1 Visa waivers agree to provide healthcare services for three years in or with designated shortage areas or populations and receive a waiver of the two-year, home-country physical presence requirement that would otherwise require that they return home for at least two years after they complete their training in the U.S.7
Doctors Across New York Physician Loan Repayment and Physician Practice Support Program (DANY) provides individual loan repayment or practice support for physicians who provide primary care or mental health services for three years in a HRSA-designated HPSA or MUA/P, or in rural areas as specified by DANY program guidelines.
Nurses Across New York Loan Repayment Program (NANY) provides individual loan repayment for direct care registered and licensed practical nurses who commit to work for three years in a HRSA-designated HPSA or MUA/P designated area.
Exceptional Medically Underserved Area/Population Designation
The designation of an Exceptional MUA/P identifies a specific population within a defined geographic area that does not qualify as an MUA/P due to “unusual circumstances” that may prevent the population from having access to primary care services.8 To receive the designation, a State Governor requests an MUA/P designation from HRSA for an area or population that may not meet the traditional criteria explained above. This designation recognizes that there may be unique circumstances or needs within a state or region that are not captured by the standard, federal criteria. For example, in 2003, an “MUP Other Population Governor’s Exception” designation was established for low income individuals in Mount Kisco, Westchester County, NY and in 2001 an “MUA – Governor’s Exception” was established for the “Homebound Population – Schenectady.” We know that New Yorkers with IDD have difficulty accessing primary care services, have a high burden of chronic disease and health-related social needs, and generally live shorter lives than individuals without IDD. New York has the opportunity to request an Exceptional MUA/P designation, as an alternate method, if necessary, to expand access to primary care providers and Health Center services for this population in areas of the State who are not already in a designated MUA/P.
To request the Exceptional Medically Underserved Population designation for individuals with IDD in New York who may not already be in a designated MUA/P, or who do not qualify for designation based on the standard criteria, the NYS Department of Health would utilize its contract with the Center for Health Workforce Studies (CHWS) at the University at Albany. The CHWS would submit Exceptional MUA/P Designation Applications with explanations and supporting data, along with a supporting letter from the Governor’s Office, to HRSA for review and approval. Per the Public Health Service Act,
3) Medically underserved populations
(A) In general
The term "medically underserved population" means the population of an urban or rural area designated by the Secretary as an area with a shortage of personal health services or a population group designated by the Secretary as having a shortage of such services.
(B) Criteria
In carrying out subparagraph (A), the Secretary shall prescribe criteria for determining the specific shortages of personal health services of an area or population group. Such criteria shall-
(i) take into account comments received by the Secretary from the chief executive officer of a State and local officials in a State; and
(ii) include factors indicative of the health status of a population group or residents of an area, the ability of the residents of an area or of a population group to pay for health services and their accessibility to them, and the availability of health professionals to residents of an area or to a population group.
(C) Limitation
The [HHS] Secretary may not designate a medically underserved population in a State or terminate the designation of such a population unless, prior to such designation or termination, the Secretary provides reasonable notice and opportunity for comment and consults with-
(i) the chief executive officer of such State;
(ii) local officials in such State; and
(iii) the organization, if any, which represents a majority of health centers in such State.
(D) Permissible designation
The Secretary may designate a medically underserved population that does not meet the criteria established under subparagraph (B) if the chief executive officer of the State in which such population is located and local officials of such State recommend the designation of such population based on unusual local conditions which are a barrier to access to or the availability of personal health services.
Section (D) above describes the Exceptional Medically Underserved Area/Population designation. If approved, the providers serving the Exceptional MUA/P would be eligible for the Health Center Program grants, subject to Federal appropriations, the J-1 Visa Waiver program, Doctors Across New York, and the Nurses Across New York programs, as mentioned earlier.
Federal HEADS-UP bill
As mentioned above, the HEADS-UP bill in Congress is legislation that, as of this publication, includes five bipartisan New York co-sponsors. The bill would add individuals with a developmental disability to the category of “special medically underserved populations” in the Public Health Service Act. This would make grants available to health centers to support them in providing services for individuals with IDD and would designate individuals with IDD as a population to be included in health professional shortage area designations for the purposes of National Health Service Corps (NHSC) scholarship and loan repayment awards for healthcare providers agreeing to work with the so-designated population, also referred to as service-obligated programs. These amendments would codify individuals with IDD as a special population that can be used to establish new MUA/P designated areas (whether using the standard methodology or the Governor-requested, exceptional alternative). They would join “migratory and seasonal agricultural workers,” those who are homeless, and “residents in public housing” in statute and would then be able to benefit from a variety of Federal and State programs designed to increase access to primary care providers and services. In addition to the NHSC, the designation of a HPSA is also used by the Federal Nurse Corps, Indian Health Service Loan Repayment, and the Rural Health Clinic programs. As noted above, the designation of MUA/P is used by the Health Center Program, the J-1 Visa Waiver program, the Doctors Across New York Physician Loan Repayment and Physician Practice Support Program, and the Nurses Across New York Loan Repayment Program. All these programs would help mitigate the challenges faced by New Yorkers with intellectual and developmental disabilities in accessing healthcare services, creating potential for improved health outcomes. One distinct benefit of the proposed HPSA designation is the opportunity that it creates to expose a broader array of clinicians to working with individuals with IDD in clinical sites through the health professional loan repayment programs. Increased exposure among clinicians to working with this population will aid in developing workforce expertise and diagnostic accuracy, the lack of which often leads to inappropriate and/or ineffective care.
Maximizing Existing Shortage Designations in New York
In New York, there are already 901 Health Center/Health Center Look-Alike sites, 1,661 National Health Service Corps approved sites, 203 Health Professional Shortage Areas (divided by primary care, mental health, and dental services), and 133 designated medically underserved areas/populations.9 All of the Federal programs, including the service-obligated programs, that use these designations can be accessed by healthcare providers serving any population, including individuals with IDD, within the designated areas.
There are tools that healthcare providers can access that will help them identify whether they are practicing in an area that has been designated by HRSA as a shortage area, and how to access the different Federal programs associated with the shortage designation. For example, HPSA Find, MUA Find, Find Shortage Areas by Address, HRSA Map Tool, Medically Underserved Areas/Populations Map, Health Professional Shortage Areas (HPSA) Map – Primary Care, HRSA National Health Service Corps (NHSC) – Comparing Programs, Become a NHSC Site, HRSA Health Workforce Connector, The Hub for Health Workforce Shortages.
Recommendations
New York primary care, mental health, and dental clinical providers who serve individuals with intellectual and developmental disabilities should maximize utilization of the currently designated shortage areas and populations within the State, which offer access to Federal and State programs in the designated geography for all clinicians and health centers, regardless of the designated population.
Until Congress passes the HEADS-UP bill, New York should pursue shortage designations from HRSA for areas of the State that are not currently designated, but that include a significant population of individuals with IDD who have difficulty accessing care. These designations can be pursued using the standard criteria, or if the circumstances in the geographic area do not support that approach, the Governor should request an Exceptional designation.
Endnotes
1 Iadarola S, Siegel JF, Gao Q, McGrath K, Bonuck KA. COVID-19 Vaccine Perceptions in New York State's Intellectual and Developmental Disabilities Community. Disabil Health J. 2022 Jan;15(1):101178. doi: 10.1016/j.dhjo.2021.101178. Epub 2021 Jul 31. PMID: 34362712; PMCID: PMC8325377.
2 Videlefsky AS, Reznik JM, Nodvin JT, Heiman HJ. Addressing Health Disparities in Adults with Developmental Disabilities. Ethn Dis. 2019 Jun 13;29(Suppl 2):355-358. doi: 10.18865/ed.29.S2.355. PMID 31308605; PMCID: PMC6604783.
3 U.S. Adults with Intellectual and Developmental Disabilities Are Living Longer, But COVID Threatens to Erase Recent Gains
4 HRSA - What Is Shortage Designation?; CHWS – Service Obligated Programs Database – Doctors Across New York; NYS DOH Nurses Across New York Loan Repayment Program
6 Communication with the Center for Health Workforce Studies, University at Albany.
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