Healthcare Delivery Systems for Individuals IDD: Innovations in Israel & the United States
By David A. Ervin, BSc, MA, FAAIDD, Makom; Sharon Ehrnwald, MA; Israel Elwyn
Aiman Tohid, MD, MPH, Makom; Miriam Feinberg, MA, Israel Elwyn
As we at Helen and in Jewish Communities around the world celebrate Jewish Disability Awareness and Inclusion Month (JDAIM), we pause once again to contemplate our responsibilities to people—all people—with intellectual and/or developmental disabilities (IDD). We also leverage JDAIM to renew and refresh our commitment to carefully examining myriad barriers to full participation of people with IDD, and rededicate ourselves to the eradication, once and for all, of those barriers. Access to and the delivery of healthcare for individuals with IDD presents unique challenges. People with IDD, particularly adults, are more likely to experience adverse health conditions, and face significant difficulties accessing care. At the same time, healthcare personnel often lack sufficient training to treat this cohort effectively; and research continues to show significant ableism in healthcare.
These and other barriers to health equity are not new for people with IDD. In Israel and the United States alike, people with IDD, particularly adults, struggle to find accessible, culturally relevant, timely, and responsive healthcare. Two very different systems, separated by thousands of miles, and there is little to distinguish health outcomes between people from both countries with IDD. In Israel, healthcare is nationalized. There are four health maintenance organizations (HMO), their kupot cholim. Israelis have the option to choose from among those four kupot cholim through which they access their healthcare. Here in the US, of course, healthcare is not nationalized, and Americans can choose from among a raft of health insurance companies, overwhelmingly for-profit companies, through which to receive their care. Two vastly different systems. And yet, health status and health outcomes experienced by Israelis and Americans with IDD are nearly indiscernible.
Two community providers of long-term services and supports, Makom in the United States and Israel Elwyn (IE) in Israel, have undertaken key initiatives that drive at the heart of health inequities so common among people with IDD.
In 2022, Makom hosted a two-day Health Equity Summit, gathering the relatively few content experts from around the US to conceptualize a healthcare delivery system designed with and for people with IDD. At Israel Elwyn, which supports literally thousands of Israelis with disabilities across the country, work on developing healthcare innovations is well underway. Not coincidentally, Makom and Israel Elwyn entered into a formal partnership several years ago. The two organizations share common core values and philosophies of support. Unsurprisingly, against that backdrop, the two organizations have taken on health equity for people with IDD head on, developing two models of healthcare delivery that are, at once, unique to the healthcare systems of each country and address persistent, global barriers to are indistinguishable.
Israel Elwyn’s Approach to Health Equity
Israel Elwyn (IE) is a leader in advancing health equity for individuals with disabilities through innovative collaborations and an unwavering commitment to inclusion. Research identifies three primary barriers to accessing medical care for children with disabilities: geographic distance to care, socioeconomic status, and physical disabilities. Additional obstacles for families of children with disabilities include limited appointment availability, lack of awareness, and insufficient knowledge about treatment options. To remove these barriers, a specialized collaborative clinic was established within IE’s Early Intervention Centers (EIC), enabling collaborative consultations among medical specialists, IE’s professionals, and parents. One such EIC in Northern Israel is a collaboration with Rambam Hospital. This Spasticity Clinic, which involves an orthopedist, pediatric neurologist, neurosurgeon, physiotherapist, and occupational therapist, as well as IE’s professional staff, provides comprehensive, integrated healthcare to toddlers with intellectual and complex physical with the full involvement of their families in the familiar EIC environment. By facilitating medical consultations in an environment familiar to families, this program fosters trust, strengthens collaborative care, and creates a solid foundation for ongoing support throughout the child’s life.
IE’s Traffic Light system, developed with the hospital system, is designed to streamline communication and fosters understanding between medical professionals and patients with IDD.
Another strategic partnership built on IE’s commitment to health equity for people with IDD is a formal collaboration with Hadassah Medical Center in Jerusalem and the Henrietta Szold Hadassah-Hebrew University of Jerusalem School of Nursing. Among multiple elements to this partnership is IE’s Traffic Light system, developed with the hospital system, that is designed to streamline communication and fosters understanding between medical professionals and patients with IDD by providing a clear framework. It begins with "red light" information, addressing critical issues like known allergies and primary syndromes. Next, the "yellow light" section focuses on questions about the patient's communication methods, sensory needs, and mobility. Finally, the "green light" section highlights things a physician should be aware of, such as what brings the patient comfort and reassurance, creating a holistic approach to patient care.
In addition to being an essential tool to enhance communication between patient and treating professional, the Traffic Light system ensures effective emergency treatment for individuals with disabilities by training emergency room staff to engage directly with individuals rather than relying solely on accompanying caregivers. By fostering direct communication, the Traffic Light sets a standard for inclusivity within mainstream medical settings.
Makom and Health Equity
Two critical takeaways emerged from the Makom-hosted 2022 Health Equity Summit—a healthcare delivery system model concept and a workplan to bring the model from concept to implementation in the community. A primary element of the model was developed and implemented immediately, namely Makom’s Clinical Services Department. Made up of primarily allied health disciplines—occupational and physical therapies, speech and language, behavioral and mental health, diet and nutrition, and a range of nursing services, including nurse practitioners—Makom Clinical Services was launched in 2023. These on-demand clinical disciplines deliver integrated interdisciplinary care to adults with IDD in both community-based natural environments and, beginning in April this year, in an ambulatory care clinic. The Clinical Services model explicitly features a highly collaborative approach to clinical care, engaging the person with IDD, their family and friends, the direct support professionals (DSP) who support them, their existing medical, dental and mental health providers where applicable and appropriate, and others from across the various systems of care in which they receive support. While these Clinical Services are new and data are very early, analyses show improvements in patients’ mental health outcomes, particularly among individuals with complex behavioral support needs, and there is evidence of better management of chronic conditions such as diabetes and hypertension through coordinated services.
A larger, more comprehensive healthcare delivery system is the core deliverable from the Health Equity Summitt. Makom’s Clinical Services will be part of that system that will also include medical—both primary and specialty care—integrated dental and oral health services, and related, ancillary health services that will combine to offer a Medical Home model for people with IDD across the lifespan. This system is envisioned on a healthcare collaborative platform, with a range of formal partnerships comprising the system, including academic medicine and dentistry, private and public (e.g., local county mental health crisis services) mental and behavioral health clinicians and resources, health promotion and wellness resources, health advocacy and education, and lab and pharmacy services, among others. This healthcare delivery system will be built with and for people with IDD and be architecturally and attitudinally accessible to people with IDD, their friends and families, and other supporters. Makom further envisions a consultative element to the model, where existing community-based health professionals have access to content expertise developed at the model on an as needed basis. Work on standing up this healthcare delivery system is well underway and has already attracted public and private philanthropic support.
Educating the Next Generation of Healthcare Providers
Makom has, in the meantime, formalized partnerships with Georgetown University School of Medicine, Community Health Division, and University of Maryland School of Dentistry. These partnerships are designed to address the need to educate next-generation clinicians, a longstanding and major challenge in addressing health equity for people with IDD. In the US, there are about 200 medical schools, for example. Only one, the University of Colorado School of Medicine, has incorporated IDD into its curriculum, thus making it mandatory for all medical students.
IE has also prioritized partnerships with leading medical and therapeutic institutions of higher education in Israel, including Hebrew University of Jerusalem, the Technion Israel Institute of Technology, and other nursing and medical schools. These collaborations immerse students in the world of disability through hands-on learning in IE’s programs, offering exposure to the challenges and experiences of individuals with IDD. By interacting directly with Israelis with IDD and other disabilities, their families, and the staff who support them, future healthcare providers gain the skills and sensitivity necessary to deliver equitable, person-centered care.
Students have played a pivotal role in testing and implementing tools like the Traffic Light system, further enhancing care delivery by bridging communication gaps in medical settings. By equipping future professionals with such practical tools, IE ensures that the next generation of healthcare providers is prepared to meet the needs of individuals with disabilities.
IE’s partnerships with various colleges and universities, including University of Haifa, Tel Aviv University, and Reichman University, focus on inclusive education for individuals with disabilities. In these programs, students with disabilities learn alongside their peers as well as medical students at the universities, fostering personal development, self-advocacy, and opportunities for meaningful employment.
Meanwhile, Makom has developed a two-week, intensive and immersive community rotation for 3rd and 4th year Georgetown University medical students. Feedback gathered from students who have gone through the rotation is uniformly exceptional, especially in reflections on changed attitudes and understanding of lived experiences of people with IDD and how it informs the students’ approach to care. Makom’s Chief Executive and Director of Clinical Services are regular guest lecturers at University of Maryland School of Dentistry, introducing dental students to this patient cohort. And, Makom, Georgetown medical school, and University of Maryland dental school have, through an interprofessional education (IPE)/collaboration (IPC) lens, have recently developed multidisciplinary grand rounds that brings medical students, dental students, and Makom Clinical Services clinicians together in a clinical milieu to co-treat patients with IDD.
“Israel Elwyn and Makom would be among the very first to urge caution. While both organizations have led innovations in healthcare for people with IDD, there is a very long way to go and much to do to achieve health equity. Health policy in both countries must explicitly address people with IDD and the persistent barriers they face when accessing healthcare.”
Conclusion:
As we celebrate Jewish Disability Awareness and Inclusion Month in February, we acknowledge that Israel Elwyn in Israel and Makom in the US have made critical strides towards meaningful, demonstrable health equity for people with IDD. Israel Elwyn EICs and Makom Clinical Services offer demonstrably effective, community-based healthcare delivery models that address the unique needs of children and adults with IDD, with notable strengths in multidisciplinary collaboration and tailored services. The EICs excel in providing early, specialized care to toddlers with IDD, significantly improving their physical health and preventing the escalation of chronic conditions. Similarly, Makom Clinical Services provide responsive, integrated services for adults with IDD, particularly in managing complex health issues like mental health and chronic diseases. These outcomes suggest that a community-centered, interdisciplinary approach, particularly built around strategic partnerships in academia, can significantly improve health outcomes for people with IDD.
Israel Elwyn and Makom would be among the very first to urge caution. While both organizations have led innovations in healthcare for people with IDD, there is a very long way to go and much to do to achieve health equity. Health policy in both countries must explicitly address people with IDD and the persistent barriers they face when accessing healthcare. Research priorities around assessing the IE and Makom models, as well as other models around the world, must be firmly established so that models can be considered on impact and efficacy analyses.
And, both organizations acknowledge that our work is, by any measure, not enough. More can and must be done if we are to eradicate, once and for all, complex and overlapping access barriers to optimal health enjoyed by this cohort. This month, this JDAIM, we indeed rededicate ourselves to the eradication, once and for all, of healthcare access barriers for all people with IDD, one step at a time. We embrace the wisdom of Pirke Avot (2:21), “we are not obligated to complete the task, but neither are we free to desist from it.”
About the Authors
David Ervin is CEO of Makom, a community provider of home and community-based services and other supports in the Washington, DC region. With 38 years in the field of intellectual and developmental disabilities (IDD), the last 25 of which spent focused on health equity and access to culturally relevant and response healthcare for people with IDD, he's done work in this space around the US and internationally.
Sharon Ehrnwald, MA, is Asst. CEO for International Relations with Israel Elwyn, where she has been employed for ten years. She received her BA in Social Work from Ariel University and her MA in Non-Profit and Community Organizational Management from Hebrew University of Jerusalem. She is also holds Certification as Director and Officer in the Social Sector in Israel from Reichman University, Herzliya.
Aiman Tohid, MD is Director of Clinical Services at Makom. She has 15+ years of experience working with non-profit organizations and 20+ years of clinical experience working with IDD population & mental health conditions. Dr Tohid is extensively published, including books entitled "COVID-19 Pandemic" and "Behavioral Pediatrics edition 5".
Miriam Feinberg, MA is Content, Data and Administration Coordinator in the International Relations Department with Israel Elwyn. She received her BA in Psychology from University of Colorado Boulder and her MA in Non-Profit Management and Leadership from Hebrew University of Jerusalem.