1. Innovative Initiatives in Intellectual & Developmental Medicine or Collaborative 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. The Society of Teachers of Family Medicine has approx. 48 “Groups on” – interest groups who promote a specific curriculum in FM training  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

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 1. Medical School graduates not competent to treat ID population (Deans 52%, Students 56%) 2. Residency graduates not competent - (Directors 32%) 3. Clinical training in ID not a high priority - (Deans, 58%) 4. Most students don’t receive any clinical experience - (Students, 81%) 5. Most residency programs are not providing clinical training - (Directors, 77%) 6. 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 Report The good news 1. Students were interested in treating patients with ID as part of their career - (Students, 74%) 2. Deans said that students should receive significant clinical experience patients with ID - (Deans, 67%) 3. Programs are interested in implementing a curriculum regarding ID - (Deans 100%, Directors 90%)

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

11. MAHEC Mini - fellowship What we learned 1. Good people and innovative programs across the country devoted to this population 2. Strong desire for sense of community, shared vision, purpose, and training 3. Despite growing consensus in understanding the vast needs – no mandate to take action 4. Overarching recognition of need for educational models to train physicians

12. Family Medicine Educational Consortium 1. Affiliated with Northeast Region Society Teachers Family Medicine (STFM) 2. Mission: To build strategic relationships that transform medical education and health systems 3. 14 states / 130 Residency programs / 50 Departments FM / 350 faculty & residents/practice groups/FQHCs 4. Promote medical student interest, stimulate faculty recruitment / development, and leadership skills

13. FMEC Developmental Disabilities Collaborative Project - 1. Mission: Support availability and quality of medical care for people with DD 2. Collaborate with interested external organizations 3. Link to Future of Family Medicine Report – redesign care for patients with ID/DD into ‘medical homes’ 4. Create relationships with community/service/ advocacy organizations 5. Explore curricular models to improve training

14. Medical Homes for People with Intellectual/Developmental Disabilities - FMEC 1. DD Collaborative pre-conference at the annual meeting since 2003 - funding from multiple sources – AHRQ, programs Initially focused on issues in clinical care 2. Recurring themes: lack of information about I/DD medical issues, lack of training for physicians 3. 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 would for 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 n etwork  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 – NCID Preconference 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 – NCID Project 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 – NCID Project 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 – NCID Challenges 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