September 24, 2019
VADM Jerome Adams, M.D., M.P.H.
HHS Office of the Secretary
200 Independence Ave, SW
Humphrey Bldg. Suite 701H
Washington, DC 20201
Dear Admiral Adams,
I write to you on behalf of the National Council on Disability (NCD), an independent federal agency charged with providing advice and recommendations regarding disability policy to the President, Congress, and other federal agencies, to request your support in shaping disability competency training in US medical schools, including but not limited to patients with intellectual and developmental disabilities. Specifically, the Liaison Committee on Medical Education (LCME) has agreed to consider suggested revisions to their standards as made by NCD and are to address this issue during their upcoming October 15-17 meeting; we kindly request your support in encouraging the LCME to make revisions that are truly meaningful.
As you know, due in part to insufficiencies in the standards set for US medical schools’ training requirements, patients with disabilities, including certain intellectual and developmental disabilities (I/DD), regularly face unreasonable difficulties in finding doctors properly trained to treat them; and the health care needs of people with I/DD in particular are largely underserved. Medical students need content and clinical experiences to support the variety of care needed for all – including the large population of people with I/DD numbering in the millions, as well as for the larger disability population. Integrating the specific needs of patients with disabilities in the curricula standards that medical schools follow, as set by the LCME, would prompt curriculum development and documentation by medical schools of learning objectives around the needs of patients with disabilities, while creating better prepared physicians that are able to serve a larger community of patients. Also, as is always the case, good healthcare at the outset is more cost effective over the long run.
To that end, NCD recommended to the LCME that it:
- Add language to their curricula standards that requires medical schools to prepare their students to provide proper care to patients with disabilities, including patients with intellectual and developmental disabilities, through both clinical and didactic training; and
- At a minimum, students should be required to demonstrate proper clinical practice skills and a sensitivity to the ancillary needs of this patient population (including respectful nomenclature, supported decision making, knowledge of living arrangements that might impact compliance, communication avenues, and systems of support).
While the LCME does designate “disability factors” within its standards as an acknowledged healthcare disparity for which solutions should be identified, the language used is too broad and imprecise in relation to the necessary accommodations and inclusivity that must be made for people with disabilities. The specific revisions that NCD suggests are a more equitable integration for the disability population as compared to the more specific standards the LCME has set regarding other populations.
More specifically, NCD also recommended to the LCME that it should require the following:
- Students should be taught to recognize and appropriately address disability biases in themselves, in others, and in the health care delivery process. Studies of health disparities among people with disabilities has shown that disability bias among doctors exists and can be corrected by better training.
- Medical school curricula should include instruction regarding the manner in which people with intellectual and developmental disabilities perceive health and illness and respond to various symptoms, diseases, and treatments (a revision particularly relevant for patients who might utilize supports to describe symptoms or adhere to management plans because of their disability, and might require an adapted approach in order to integrate the patient’s experience).
- The LCME should also express with specificity that students in training to provide treatment should be prepared to recognize the potential health-related impact on patients of developmental disability factors.
It is important to note that while there is ample research available to support the needs for such additional instruction, the inclusion of such training is also a matter of LCME compliance with respect to its Americans with Disabilities Act and Rehabilitation Act obligations. Some schools are already moving forward and are making strides in including disability competency in their respective curricula, but the revision of the standards set by the LCME, as recommended by NCD, will make the inclusion of patients with disabilities in medical training incumbent on all medical schools in the US. Again, the LCME has informed NCD that they will consider these recommendations and attempt to properly address this issue during their upcoming October 15-17 meeting; we believe that your support in this will help encourage the LCME to pass revisions that are effective and serve as a more appropriate means of addressing the healthcare needs of patients with disabilities.
NCD has been pursuing systems change in healthcare delivery in a variety of ways. With respect to oral healthcare, an issue we know to be a priority of yours, we successfully worked with the dental community to revise the American Dental Association’s Code of Professional Conduct to state that a patient may no longer be denied care based on their disability – a standard already adopted by some states as law. Further, and very similar to this issue, we were recently successful in working with the Commission on Dental Accreditation to revise their curricula standards, thereby making the training of treatment management for people with intellectual and developmental disabilities a part of standard dental training curricula in the US. Additionally, in our advisory role to Congress, and as is certainly directly related to the function of your office, we assisted in the drafting of bipartisan legislation that identifies people with intellectual and developmental disabilities as a medically underserved population under the Public Health Service Act, to meet that population’s lacking healthcare services (the passing of which, as I’m sure you’re well aware, would also represent a significant step forward in society’s ability to provide the care currently lacking for this population). Our current steps are to release a series of forthcoming reports on disability and bioethics, including two reports to be released in September that focus on organ transplants and assisted suicide; and to work with you on improving medical education training for patients with disabilities per this letter. We believe your involvement in this particular venture will prove to be invaluable.
We respectfully request a meeting with your staff to engage in further dialogue concerning this request ahead of the LCME’s quickly approaching October meeting, to assist in the convening of stakeholders from the disability community and representatives of your Office if needed, and to discuss the information and perspectives of your Office on this matter. Thank you for your time and consideration of this vital issue. Please contact Amged M. Soliman, NCD Attorney Advisor, at firstname.lastname@example.org or 202-272-2116, to arrange a time to meet. We look forward to further discussion concerning this request.
 American Academy of Developmental Medicine and Dentistry Consensus Statement on Health Disparities for Persons with Neurodevelopmental Disorders and Intellectual Disabilities. http:// aadmd.org/articles/health-disparities-consensus-statement. (Accessed September 5, 2019.)
 Kornblau, Barbara L., JD, OTR, FAOTA. “The Case for Designating People with Intellectual and Developmental Disabilities as a Medically Underserved Population.” Autistic Self Advocacy Network, 9.
 Boyle CA, Boulet S, Schieve L, Cohen RA, Blumberg SJ, Yeargin-Allsopp M, Visser S, Kogan MD. “Trends in the Prevalence of Developmental Disabilities in US Children,” 1997–2008. Pediatrics. 2011; 27: 1034-1042.
 “Care of Patients with Disabilities: An Important and Often Ignored Aspect of Family Medicine Teaching.” Jain S, Fam Med. Jan. 2006; 38(1).13-5. See also “Health Professional Student Attitudes Towards People with Disability.” Tervo RC, Palmer G, Redinius P, Clin Rehabil. Dec. 2004; 18(8):908-15. See also “Cross-disability Experiences of Barriers to Health-care Access.” Drainoni M, Lee-Hood E, Tobias C, Bachman S, Andrew J, Maisels L, Journal of Disability Policy Studies. 2006;17:101–115. See also National Council on Disability. 2009. “The Current State of Health Care for People with Disabilities.”48-49.
 42 USC § 12101 et seq.
 29 USC § 794 et seq.
 The Healthcare Extension and Accessibility for Developmentally disabled and Underserved Population Act (“The HEADs UP Act”), H.R. 2417, 116th Cong. (2019).