Innovative Initiatives in Intellectual & Developmental Medicine or Collaborative Development of an “Orphan Curriculu

1. Innovative Initiatives in Intellectual & Developmental MedicineorCollaborative Development of an “Orphan Curriculum”

2. My goals for today • The participant will be able to provide an overview of U.S. efforts to incorporate developmental disorders and intellectual disabilities into medical training. • The participant will be able to list details of the proposed curriculum content for medical residency training developed by the NCIDM. • The participant will be able to discuss strategies, mechanisms and incentives to pilot the proposed curriculum at select primary care residency programs.

3. An Orphan Curriculum?

4. Abortion Training • Addiction Medicine • Adolescent Health Care • Evidence Based Medicine • Genetics • Global Health • HIV/AIDS • Integrative Medicine • LGBT Health • Minority & Multicultural Health • Musculoskeletal/Sports Medicine • Nutrition Education • Oral Health • Pain and Palliative Medicine • Rural Health • Spirituality • Violence Education The Society of Teachers of Family Medicine has approx. 48 “Groups on” – interest groups who promote a specific curriculum in FM training

5. What do these curricula have in common? • They have no specific “time” in the residency curriculum • They have no specific specialty organization that has stressed the importance of the curriculum time • Although most primary care educators would agree these topics are important – the requirements for teaching these topics are vague and weak • There are no large business or pharmaceutical organizations promoting CME around these topics – so no free lunches

6. The NCID Curriculum – and unlikely Partnering of Organizations-- not the usual suspects American Academy of Developmental Medicine and Dentistry (AADMD) Health Education Center (M-AHEC) Mini-fellowship in Adult Developmental Medicine Family Medicine Educational Consortium (FMEC)

7. AADMD American Academy of Developmental Medicine and Dentistry Founded 2002: “to improve the health of individuals with intellectual disabilities and nerurodevlopmental disorders (ID/ND) through patient care, teaching, research and and advocacy --interdisciplinary network for clinicians --advocacy for health care system change to create improved access and quality --”disseminate specialized information to families”

8. Curricular Assessment of Needs CAN Project – AADMD 2005 • Medical School graduates not competent to treat ID population (Deans 52%, Students 56%) • Residency graduates not competent - (Directors 32%) • Clinical training in ID not a high priority - (Deans, 58%) • Most students don’t receive any clinical experience - (Students, 81%) • Most residency programs are not providing clinical training - (Directors, 77%) • 80% of medical students and 90% of residents reported less than 1 hour of training in the care of patients with ID/DD.

9. CAN ReportThe good news • Students were interested in treating patients with ID as part of their career - (Students, 74%) • Deans said that students should receive significant clinical experience patients with ID - (Deans, 67%) • Programs are interested in implementing a curriculum regarding ID - (Deans 100%, Directors 90%)

10. Mountain Area Health Educational Center-- Mini-fellowship Mini – fellowship began in 2004 funded by North Carolina Council on Developmental Disabilities • 1st year - literature review, statewide surveys, focus groups, CME programs (Jurczyk) • 2nd year – Content development / no established model / many questions, no clear answers • 3rd year – initial cohort of 8 physicians

11. MAHEC Mini - fellowshipWhat we learned • Good people and innovative programs across the country devoted to this population • Strong desire for sense of community, shared vision, purpose, and training • Despite growing consensus in understanding the vast needs – no mandate to take action • Overarching recognition of need for educational models to train physicians

12. Family Medicine Educational Consortium • Affiliated with Northeast Region Society Teachers Family Medicine (STFM) • Mission: To build strategic relationships that transform medical education and health systems • 14 states / 130 Residency programs / 50 Departments FM / 350 faculty & residents/practice groups/FQHCs • Promote medical student interest, stimulate faculty recruitment / development, and leadership skills

13. FMEC Developmental Disabilities Collaborative Project - • Mission: Support availability and quality of medical care for people with DD • Collaborate with interested external organizations • Link to Future of Family Medicine Report – redesign care for patients with ID/DD into ‘medical homes’ • Create relationships with community/service/ advocacy organizations • Explore curricular models to improve training

14. Medical Homes for People with Intellectual/Developmental Disabilities - FMEC • DD Collaborative pre-conference at the annual meeting since 2003 - funding from multiple sources – AHRQ, programs Initially focused on issues in clinical care • Recurring themes: lack of information about I/DD medical issues, lack of training for physicians • Recognition of scattered “champions” for this population

15. National Curriculum Initiative in Developmental Medicine FMEC Pre-conference October 28, 2010

16. Acknowledgements – Support Provided by The Walmart Foundation - AADMD The North Carolina Council on Developmental Disabilities

17. Where Do We Go From Here?Family Medicine Education in the Care of Patients with Intellectual Disabilities in the U.S. - Caryl J Heaton, D.O. New Jersey Medical School – UMDNJ IASSID Bethesda, MD May 25, 2011

18. What has worked before? • Stealth Curriculum • Fellowships? • Geriatrics, Sports Medicine, Adolescent Medicine • Infiltrate leadership of organizations • National curriculum vetted by all • Easily accessible tools • Free or cheap CME for practicing physicians • Mandated requirements

19. Lessons Learned From International Initiatives • Clinical Support Networks • Before curriculum • Tools • Before curriculum • Program Status from Colleges (Academies) • Teaching through experience with patients is key • Trans-disciplinary training is ideal

20. So where is the innovation?

21. Three Tiers of a Curriculum for People with Intellectual Disabilities

22. How would a tiered curriculum work? • Core Tier • Should be basic and so straightforward that any reasonable residency director would say – of course we should do that • More likely they will say “of course we already do that” – but wonder if they really do? • Advanced Tier • Should be an expected goal for each residency and residency graduate • Exemplary Tier • Should be a level that suggests a graduate could be prepared to take responsibility for a large number complicated patients • Should be recognized as a center of excellence

23. Immediate goal wouldfor every residency to teach and support core competencies….

24. Breakfast of CHAMPIONS!We need champions at each level: Student Resident Faculty Residency University and Student Resident/Residency Departmental University Association State Federal level

25. Family Medicine Education in the Care of Patients with Intellectual Disabilities in the U.S. Phase 1 • Recognize the excellent work that has been done internationally and incorporate it to…. • Create an excellent curriculum document • Create tools, methodology and evaluation to support the curriculum – match to objectives • Must have face validity • Establish curriculum “tiers” • Create a repository of all curricular materials • Don’t reinvent the curriculum wheel • Residency Faculty as the unit of intervention

26. Three Tiers of a Curriculum for People with Intellectual Disabilities

27. Family Medicine Education in the Care of Patients with Intellectual Disabilities in the U.S. Phase 2 • Create a support network – • Family Medicine Education Consortium • National network “partners” – NC, FL and CA • Connect with university department champions • Recognize “Advanced” and “Exemplary” residencies • Recognize Residency faculty champions • Connect residency faculty in some meaningful way • Move the curriculum through organized family medicine

28. Family Medicine Education in the Care of Patients with Intellectual Disabilities in the U.S. Phase 3 • Create advocacy support for residency and residency faculty champions network • Link patient self-advocates to network and individual residencies • Develop policy and funding initiatives • HRSA priority for patients with ID/DD • Search out other funding partners • Accountable Care Organizations – Virtual ACO

29. FMEC Champions Project – NCIDPreconference Oct. 20, 2011 Danvers MA • Skills Building • OSCE (Objective Structured Clinical Evaluation) Development • Evaluation of Video-tape Reviews • Clinical Success Stories • Integrating NCID Curriculum into the Residency • Cultivating Curriculum Champions • Funding Curricular Initiatives – building partners in the Community

30. FMEC Champions Project – NCIDProject Goals Oct. 20, 2011 Danvers MA • Recruit first members of “Project” • Residencies, Practice Groups, FQHC • …….One Champion • Recruit Mentors from AADMD, MAHEC, FMEC and STFM “group on” • Establish communication system and “learning community” • Clinical information support • Teaching support

31. FMEC Champions Project – NCIDProject Goals Oct. 20, 2011 Danvers MA • Basic training in community advocacy • How do you get support in you institution • Basic training in “institutional advocacy” • How do you get support in your institution • Dissemination and implementation of curriculum tools – for basic skills residency • Evaluation and improvement Continued

32. FMEC Champions Project – NCIDChallenges and Opportunities • Piecing together the funding • Consider HRSA training application for Faculty Development • Create a PBRN – pilot data, research questions • What if you build it and nobody comes? • Faculty or residents or both? • Question of Fellowship or Certificate of Added Qualification Continued

33. Final Thoughts • Who are the other partners for these orphans curriculum? • Medicine • Pediatrics • “organized medicine” • How can we find more intra-discipinary partners? • How do we sustain this effort?

34. Thank you Caryl J. Heaton, D.O. Associate Professor of Family Medicine New Jersey Medical School heaton@umdnj.edu 973-972-7828