Inaugural Health Equity Summit - Part 2
Developing a Model of Healthcare for People with I/DD in the Washington, DC Region
Corresponding author: David A. Ervin, BSc, MA, FAAIDD
HELEN, The Journal of Human Exceptionality, presents – in a two-part series – proceedings of the Inaugural Health Equity Summit: Developing a Model of Healthcare for People with Intellectual and/or Developmental Disabilities in the Washington, DC Metropolitan Area. As readers will see, a group of clinicians, health policy experts, people with IDD, family members, home and community-based service providers, researchers and advocates from the region and from across the country convened a novel approach to community planning around a single focus, health equity for people with IDD.
Part 1 offers a statement of the issue and how the Summit was convened, its purposes and objectives, and reviews a number of models of care, including particular focus on healthcare financing as one of the significant barriers to healthcare access by people with IDD.
In Part 2, authors review how a healthcare delivery system that focuses on but is not necessarily exclusively and only for people with IDD is best organized, key components of a system of care, critical policy, research and health profession education initiatives in support of developing and sustaining such a system of care, and a review of the model contemplated for the Washington, DC metro area.
The consolidated, full article is available here. Questions can be directed to the corresponding author.
Organization
Breuer and colleagues’ (2022) analyses of major elements of medical care for people with IDD provides a framework for developing a care delivery system. Of note from this framework are emphases on patients with IDD taking active roles in their healthcare, integration of care and interprofessional collaboration, and training and professional development resources for healthcare providers. These foci represent longstanding barriers to quality healthcare and health outcomes for people with IDD, as well as aspirations to optimal healthcare and resulting outcomes, are represented in Figure 2 (definitions for each of the 13 categories are in Appendix C).
Figure 2. Healthcare System Elements (Breuer, et al., 2022)
Using this framework and based on core principles around which Summit attendees formed consensus, it was noted that a healthcare delivery system for the Washington, DC metropolitan area should include:
Primary and specialty healthcare, dental, behavioral and mental health, allied and ancillary care.
Integration with the long-term services and supports/Home and Community Based Services system of care (e.g., through a model similar to DDHC’s Cross System of Care Integration).
Social care services that focus on addressing and mitigating adverse social determinants of health and maintaining healthy living situations, health promotion and wellness.
Significant and formal training and professional development for healthcare practitioners already practicing throughout the region; and, partnership with local medical and/or health profession schools to develop clinical rotation opportunities, community based learning, residency opportunity and post-residency fellowships.
Consultative model, in addition to direct service, to both people with IDD and their families (similar to PPHC) and physicians and other healthcare professionals across the community.
Formal health promotion and wellness services to enhance health literacy, provide health-related resources (e.g., tobacco cessation materials, sexual education, etcetera), brain health initiatives (e.g., weight reduction and maintenance, exercise and physical activity, and nutrition counseling) that are cognitively accessible.
University-connected research on service delivery, health outcomes, health related quality of life, and other measures of impact and effectiveness
System Components
Summit attendees reviewed potential partners to the development of a healthcare delivery system that are likely to expand capacity and increase impact. For example, several existing models reviewed, notably the Westchester Institute for Human Development Medical Home, include critical partnerships with hospital systems. Another essential component of any healthcare delivery system for people with IDD is the need to develop formal professional development and health profession practitioner training opportunities in partnerships with medical, dental and health profession universities. Additional components assessed as important are shown in Table 1, as well as reasons for them.
Additional considerations include the need for training resources for health professionals who are out of their formal education programs and already practicing in their discipline, the need for a universal (shared) electronic health record (EHR) system that can integrate with data collection and documentation systems, including diagnoses codes to identify people with IDD in data analyses, that are common in the Home and Community Based Services system, and the need to create robust training opportunities for specialty care providers (e.g., Association of Psychology Postdoctoral and Internship Centers, or APPIC).
Table 1. Priority Components and Rationale
Policy and Research
There are significant barriers to health equity that can be addressed through policy advocacy, research and dissemination of information. (Financing and reimbursements are addressed above.) Among recommendations from the 2015 National Goals in Health and Wellness Research, Policy, and Practice (Sisirak and Marks, 2015) was the creation of an Information Exchange to “provide (a) open access to research outputs (e.g., innovative health and wellness programs, best practices, new findings, etc.); (b) policy and practice monographs and reports; and (c) promising technology that informs best practices for facilitating health care delivery, health advocacy, inclusion, and self-determination for people with IDD, their families, and supports” (p. 244). Another recommendation was to create and sustain a community of practice to identify existing and emerging models of care and compare the efficacy and effectiveness of those models, particularly around health outcomes, costs of care, health-related quality of life, and practitioner experience to inform policy. Further, the system must address best practice models with relation to teaching and inculcating healthy lifestyle and self-maintenance health practices and provide the supports to implement and maintain such programs to improve general wellness (Santos et al., 2022). Additional policy priorities to both inform the development of a model in the Washington, DC metropolitan region, as well as to create a public and health equity policy agenda that such a model and its stakeholders would pursue, include the following:
Implementation of value-based reimbursement (VBR) system that incentivizes improved health outcomes and health-related quality of life.
Medically Underserved Population (MUP) designation by HRSA for people with IDD—at the federal level and/or at the individual state level.
Public insurance/universal coverage of alternative medicine(s).
Required minimum, curriculum-based training in health profession curricula that explicitly addresses the healthcare and health needs and experiences of people with IDD and includes hands-on clinical experiences.
Creation of clinical competence metrics and formal standards of care focused on people with IDD. (See American Board of Developmental Medicine for Diplomate requirements at https://abdm.org/.)
Improving and expanding representation of people with IDD in health status surveillance data to inform policy (Havercamp, et al., 2019).
Integration of LTSS/HCBS and healthcare systems via collective cooperative agreements among the regions IDD agencies, health providers, and appropriate local government jurisdictions.
Summit attendees identified strategic collaborations in support of policy priorities, including the appropriate Developmental Disabilities Council (for any of Maryland, Washington, DC, and/or Virginia), state and/or local medical, dental, nursing and related societies, The Arc of the United States and/or state chapters, and major community providers of LTSS/HCBS to adults with IDD and their families.
A commitment to evaluating measurable, demonstrable impacts and effectiveness of the healthcare delivery system contemplated by Summit attendees was identified as a priority. Consistent with another of the 2015 National Goals in Health and Wellness Research, Policy and Practice (Sisirak and Marks, 2015) “to identify, document and compare the efficacy and effectiveness of existing models of community-based health care services…specifically looking at improved health outcomes including patient centered outcomes and cost of care” (p. 243), research priorities to align with the development of a healthcare delivery system for people with IDD in the Washington, DC region include at least:
Longitudinal impact on biomarkers (see, for example, Wilson, et al., 2020), health-related quality of life (e.g., Pett, et al., 2021), patient and provider satisfaction, and utilization of healthcare resources.
Comparing models of care across common patient outcome measures—this will involve sharing de-identified datasets with other systems of care, with a priority of publishing those comparisons in the scientific literature.
Dissemination of research will be through peer-reviewed/juried scientific journals, presentations at regional, national, and international conferences, and providing training opportunities (seminars, webinars and other formats) for clinicians across the Washington, DC region and virtually to clinicians anywhere. Potential partners in creating a research agenda include, for example, Kennedy Krieger Institute, Maryland’s University Center of Excellence in Developmental Disabilities (UCEDD) and Leadership Education in Neurodevelopmental and Related Disabilities (LEND), University of Maryland School of Dentistry, University of Pennsylvania School of Dental Medicine, and at a national level but in the Washington, DC area, the National Institutes of Health, National Institutes of Mental Health, National Institute on Aging, and the Eunice Kennedy Shriver National Institute of Child Health and Human Development.
Education and Professional Development
The absence of IDD content in health profession curricula is well established. The result is health professionals who are unequipped and uncomfortable in treating people with IDD, which in turn negatively impacts their health status and outcomes. The National Council on Disability has prioritized the formal inclusion of disability clinical-care competency in health profession curricula (National Council on Disability, 2022). While there is progress in adding IDD content to health profession and medical school curricula (e.g., University of Colorado School of Medicine added 10 hours of disability content to its curriculum, a part of which focuses on cognitive disabilities, in 2021), it is slow. More common are a host of promising didactic, experiential, and community-based learning modules (Golub-Victor et al., 2022; Troller et al., 2018).
The National Inclusive Curriculum in Health Education (NICHE; previously known as National Curriculum Initiative in Developmental Medicine), a project of the American Academy of Developmental Medicine and Dentistry (AADMD), seeks to provide training to medical students in the field of developmental medicine & inspire a medical career focused on individuals with IDD across the lifespan (American Academy of Developmental Medicine and Dentistry, n.d.). For physicians who are beyond the formal medical school-based education, the American Board of Developmental Medicine has begun certifying physicians who specialize in the care of people with IDD in order to increase expertise and specialty recognition.
Summit attendees unanimously urged the inclusion of formal training and professional development for health profession students in the many schools and universities in the region. The Westchester Institute for Human Development model includes a residency elective rotation in Developmental Medicine, for example. In Washington, DC, Georgetown University School of Medicine, Community Health Division, has dedicated educational resources to teaching IDD competence across disciplines, and is a willing collaborator in the creation of accessible and competent health services in the metropolitan region.
In addition, attendees spoke to the need to offer continuing medical/health education resources to health practitioners across disciplines already established in the community. To this purpose, collaboration with state, county or local medical societies is a priority. Partnerships with organizations such as IntellectAbility, which offer specialty training on IDD healthcare to clinicians on a virtual platform to develop clinical competence, are considered natural extensions of the education and professional development imperative for a healthcare delivery system for people with IDD in the Washington, DC metropolitan area. Other organizations with which to collaborate are the AADMD and the Developmental Disabilities Nurses Association (DDNA), which offer robust training, professional development and accreditation/certification resources for practicing clinicians; and, the University of Pennsylvania School of Dental Medicine offers continuing education specifically designed for professionals interested in treating people with IDD, as well as hands-on immersion training for dental teams.
Access to resources to improve health literacy among people with IDD, as well as direct support professionals (DSP) with whom they work, must improve. Given the need for integration of care across both (at least) the home and community-based services and healthcare systems, Summit attendees agreed on the need to develop and share these resources among caregivers, including DSPs but also including family caregivers and other natural supports (Geukes, Broder and Latteck, 2019; Overwijk et al., 2022;). Health promotion materials (e.g., tobacco cessation, human sexuality) that are developed to be culturally and cognitively accessible and disseminated widely to people with IDD and their caregivers is considered an essential element. A cooperative agreement among the DMV’s providers of LTSS/HCBS to adults with IDD would include concurrence to share training and education resources and offer common use and practices training for the personnel of all providers.
Summary
The agenda (Appendix B) for the Inaugural Health Equity Summit focused on first conceptualizing a healthcare model built with and for people with IDD in the Washington, DC Metropolitan Region, and second on developing a workplan to move the concept into practice. The conceptual model is a community-based healthcare collaborative of key partners and essential components as described above, and is established and designed to provide multidisciplinary, integrated healthcare to patients with IDD. The convening of the relevant DMV authorities with jurisdiction over IDD services and supports (e.g., the Maryland Developmental Disabilities Administration), public health authorities, and other, similar entities is an essential initial step to scope practicalities of interstate/inter-jurisdictional agreements. Engaging appropriate Developmental Disabilities Councils, area community providers of supports to adults with IDD, and advocacy organizations to review practicalities of and avenues to producing a regional agreement on cooperative health services is another early, key step. This macro-level focus is paramount to gaining consensus and agreement on how best to meet the healthcare and wellness needs and expectations of adults with IDD in the region.
Additional components include designing a model for training and ongoing professional development resources to any health profession practitioner in the Washington, DC region to improve confidence and increase competence among all practitioners and provide training opportunities for health profession students; dedicated health advocacy in support of policy initiatives at a local, state and federal level; a research hub and community of practice, to inform and learn from established and emerging best practices; and, a dedicated resource to improve health literacy among people with IDD , their DSPs, and other caregivers. A workplan, in support of these imperatives, is developed to establish the model. Several but not all priorities in the workplan are to continue to engage and rely on self-advocates on model design elements, to clearly identify partners to the model and the manner by which (for example, a memorandum of understanding or similar) they are engaged, and to work closely with both public and private insurances on creating the reimbursement models.
The COVID-19 pandemic revealed vulnerabilities in physical and mental health among people with IDD (Gleason, et al., 2021). There are several reasons for this, including higher rates of chronic morbidities and poorer access to culturally competent healthcare provided by trained and supported healthcare practitioners. The COVID-19 crisis and its impact on people with IDD is a call to action. In 2001, a Special Olympics-commissioned report (Horowitz, et al., 2001) outlined 13 recommendations to “remediate [healthcare] problems” experienced by people with IDD (p. 157-159. This was followed by 16th US Surgeon General David Satcher’s watershed report, Closing the Gap: A National Blueprint to Improve the Health of Persons with Mental Retardation (US Public Health Service, 2001) which outlined six goals and action steps to address health disparities long common among people with IDD. More than 20 years later, progress has been slow. In the Washington, DC metropolitan area, there remains a range of persistent barriers to healthcare that is accessible and specifically competent treating patients with IDD. The Inaugural Health Equity Summit: Developing a Model of Healthcare for People with Intellectual and/or Developmental Disabilities in the Washington, DC Metropolitan Region and its attendees have developed a model of healthcare for this community of people and a workplan to achieve it.
Acknowledgements
The Inaugural Health Equity Summit: Developing a Model of Healthcare for People with Intellectual and/or Developmental Disabilities in the Washington, DC Metropolitan Region was supported by an anonymous donor to the Makom Innovation Fund. This Proceedings manuscript was co-authored by Summit attendees, whose contributions to the Summit and commitment to the work that has followed is extraordinary. The authors thank Dr. Matthew Holder for his contributions to writing and editing the manuscript.
Authors report no conflicts of interest.
Corresponding author: David A. Ervin, BSc, MA, FAAIDD. Chief Executive Officer, Makom. 1500 East Jefferson Street, Rockville, MD, 20852, USA; +1.240.283.6001. E-mail address: dervin@makomlife.org
1) David A. Ervin, Makom, Rockville, MD; 2) Sara Ailey, Department of Community, Systems and Mental Health Nursing, Rush University, Chicago, IL; 3) James C. Bridgers, Department of Health and Human Services, Montgomery County, MD; 4) Marisa C. Brown, Georgetown University Center for Excellence in Developmental Disabilities; 4) Odile Brunetto, Department of Health and Human Services, Montgomery County, MD; 5) Kim Bullock, Community Health Division, Department of Family Medicine, Georgetown University School of Medicine, Washington, D.C.; 6) Sydnee Chavis, Department of Oral Surgery, University of Maryland School of Dentistry, College Park, MD; 7) Melissa DiSipio, Philadelphia Coordinated Health Care (PCHC), Philadelphia, PA; 8) Steven M. Eidelman, Department of Human Development and Family Sciences, University of Delaware, Newark, DE; National Leadership Consortium on Developmental Disabilities; 9) Craig Escudé, IntellectAbility, Clearwater, FL; 10) Donyale Hobson-Garcia, Makom, Rockville, MD; 11) Trudy R. Jacobson; 12) Matthew P. Janicki, University of Illinois at Chicago, Chicago, IL; National Task Group on Intellectual Disabilities and Dementia Practices; 13) Nicole LeBlanc; 14) Rachel London, Maryland Developmental Disabilities Council, Baltimore, MD; 15) Benjamin Margolis, Access: Supports for Living, Orange County, NY; American Academy of Developmental Medicine and Dentistry, Warwick, NY; 16) Nesreen Shahrour, Community Health Division, Department of Family Medicine, Georgetown University School of Medicine, Washington, D.C.; 17) Maureen van Stone, Maryland Center for Developmental Disabilities at Kennedy Krieger Institute; Project HEAL (Health, Education, Advocacy, and Law); Johns Hopkins Bloomberg School of Public Health, Baltimore, MD; 18) Sheryl White-Scott, Metro Developmental Disabilities Service Office, Bronx, NY; AHRC New York City, New York, NY; Department of Medicine, New York Medical College, Valhalla, NY; 19) Kate Williams, Community Health Division, Department of Family Medicine, Georgetown University School of Medicine, Washington, D.C.; 20) Mark S. Wolff, University of Pennsylvania School of Dental Medicine, Philadelphia, PA
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Appendix A
Inaugural Health Equity Summit: Developing a Model of Healthcare for People with Intellectual and/or Developmental Disabilities in the Washington, DC Metropolitan Region
Attendees
Appendix B
Appendix C
Model foci definitions (Breuer, et al., 2022)
