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Consensus Statement on Health Disparities for Persons with Neurodevelopmental Disorders and Intellectual Disabilities
The American Academy of Developmental Medicine and Dentistry (AADMD) advocates for the improvement of health outcomes for persons with neurodevelopmental disorders and intellectual disabilities (ND/ID). The AADMD proposes the following consensus statement to address health disparities for persons with neurodevelopmental disorders and intellectual disabilities.
This consensus statement addresses two issues:
1. What are the most important facts we know about healthcare disparities in people with intellectual and developmental disabilities?
People with ND/ID are a unique and medically distinct population by virtue of genetic, biologic, developmental and environmental factors that are the etiologic cause of these disabilities.
Thanks in large part to decades of healthcare advocacy and specialization in the field of Pediatrics, coupled with advances in medical care, people with ND/ID are living longer, with life expectancies in many cases mirroring those of the neurotypical population.
People with ND/ID consistently face challenges finding clinicians that are trained to treat them within a health care system that has no mandate, nor model to treat them with the degree of excellence expected for all other conditions which impact health.
The majority of physicians and dentists have limited knowledge regarding the health and psychosocial needs of this population primarily due from a lack of exposure and training. Clinicians as is true within society, often harbor limiting attitudes toward individuals with ND/ID and contribute to the stigmatization and marginalization that often defines their health care experience.
As a result, this population does not in general receive appropriate health promotion, preventative screenings, surveillance, or an approach to evaluation and management of health conditions consistent with that provided the neurotypical population.
Patients with ND/ID are rarely included in mainstream clinical trials and research efforts, therefore almost nothing is known regarding their suitability, response, or the clinical effectiveness of standard or emerging treatment protocols and guidelines. This severely hinders our ability to develop evidence based or best practice approaches to care that increasingly define the practice of medicine and dentistry in the 21st century.
Patients with ND/ID are not adequately transitioned from pediatric to adult focused care, nor based on the premature aging and medical conditions frequently associated with their disability, to timely geriatric focused care.
The majority of newly graduated physicians and dentists despite an interest in patients with ND/ID do not feel competent to treat this category of patients. Beyond this personal commitment, there are very few opportunities or incentives to receive (pre or post-graduate) competency-based training.
Despite decades of reports calling for changes in medical and dental training and systems of care, and despite pockets of excellence across the country where quality care is a priority, no comprehensive international plan has been articulated or enacted to address these shortcomings.
There is compelling evidence that people with ND/ID are “medically underserved”. The United States Surgeon General reported on these health barriers and disparities, and yet despite meeting their own definition of a Medically Underserved Population (MUP), the HRSA does not recognize persons with ND/ID as qualifying for this designation.
Minority patients with ND/ID often experience ethnicity related disparities in addition to those of their disability specific condition. The lack of disability-related culturally competent care frequently compounds the challenges already faced by Hispanic and African American populations.
2. What are the most important things that could be done now to improve the situation?
People with ND/ID should be formally recognized as constituting a “medically underserved population” by the HRSA and other appropriate Federal agencies and receive the consideration, benefits, opportunities and assistance provided to populations with that designation. This designation, as well as the unmet healthcare needs of this population, should be acknowledged by established medical and dental organizations to address health disparities.
Medical, dental, nursing and allied health education curricula should include didactic and clinical opportunities for students to develop an understanding and appreciation of the unique qualities and rich opportunities possible for individuals with ND/ID. These curricula should be designed to raise awareness, stimulate interest, and support developing not only clinical competence, but also skill in healthcare advocacy for patients, their families and their caregivers.
Healthcare providers should establish, formulate, recognize, disseminate and adopt clinical guidelines, protocols and best practices related to the health promotion, disease prevention and specific treatment needs of patients with ND/ID.
In addition to ND/ID-specific core scientific and medical knowledge, education of healthcare professionals should include knowledge of the movement towards community-based living, education, employment, socialization, person centered planning, self determination and quality healthcare that reflects the desired experience of this population.
People with ND/ID have both the right and natural inclination to live in typical settings in the community. Many need accommodations, supports, and resources to do so successfully. Physicians, dentists and other healthcare providers, in their role as health care advocates, should strive with the same vigor and commitment as their vocational calling to facilitate and encourage this in a manner that fully honors the civil and human rights of individuals with ND/ID, and above all else commits to health parity and their highest quality of life possible.
The discipline of Developmental Medicine and Dentistry should be established, with all the requisite components that define a specific and unique body of medical knowledge, expertise, and training. Specialists in this discipline would be trained to provide educational, research, and consultative roles while providing leadership in discipline and system of care delivery. These specialists would complement the role of the primary care medical home, and support subspecialty care physicians in their role of providing quality care to persons with ND/ID in the same manner they provide for their neurotypical patients.
Compensation and reimbursement for healthcare professionals should be amended to reflect the additional training, time, special accommodations, and care coordination demands that are required to provide specialized care for this unique population.
The Board of the AADMD would like to give special thanks to Steve Eidelman, University of Delaware H. Rodney Sharp Professor of Human Services Policy and Leadership, for his dedication in assisting the AADMD in drafting this consensus statement.