1. Clarissa Kripke, MD, FAAFP Director Developmental Primary Care University of California, San Francisco Training Family Physicians to Improve Care for Adults With Complex Disabilities

2. Disclosures Neither my family or I have any financial relationships with health or disability related commercial interests.

4. Clinical services Advocacy to support the client/patient Research in health services and clinical outcomes Training and technical assistance CART—Organized Systems of Care

6. Training Methods Competencies (integrate into existing courses) Lecture/Workshop Problem Based Learning (case of transition age youth with autism, behavior change and mother with cancer—simulated interprofessional care) Webinar On line training with video Standardized patient (caregiver); or group interview of patient Community Project Elective—with home visit, specialty service and community based agency experiences Point of Care Tools and 1-2 pagers on website Teaching consult clinic

7. Communication/Empathy Exercise

8. Systematic Approach to the Patient Step One: Identify who is on your team Step Two: Learn about the patient’s baseline (Neurodevelopmental Profile) Step Three: Make sure health related services and supports are in place Step Four: Illness presents as a change in behavior or function--rule out medical first then evaluate the social and physical environment Step Five: Expanded health maintenance and screening Step Six: Implement behavioral supports; Consider a mental health diagnosis and only AFTER making a diagnosis--treat Step Six: Evaluate the caregiver’s needs

9. Interdisciplinary Health Care Team for a Patient with IDD Decision Maker Patient Advocate Translator  Group Home Supervisor  Primary Family Caregiver  Residential Support Supervisor Direct Caregivers Medical Home Primary Doctor: Nurse Practitioner: Pharmacy: Medical Specialists Dentist Allied Health Durable Medical Equipment Providers Oversight Agencies Case Coordinators  Vocational  Day  Insurance  Social Service  Other

10. Neurodevelopmental Profile cognition neuromotor seizures sensory mental health/behavior

11. Are there team members or services and supports missing? Arranging funding Asking for help when ill Scheduling visits Preparing for visits Being on time Communicating Cooperating with medical evaluations Making informed consent decisions Adhering to medical recommendations

12. Rule out Medical Head: migraines, hearing, vision, dental, injury Urinary tract: stones, UTI, and obstruction Reflux and GI problems Thyroid and Trauma Seizures and Side Effects of Medication Zelinsky, SG. Evaluation for and use of psychopharmacologic treatment in crisis intervention for people with mental retardation and mental illness. In : Hanson R, et. al. Crisis prevention and response in the community. Washington DC, American Association of Mental Retardation; 2002.

13. Evaluate the social and physical environment…. Abuse or psychosocial stressors Escape or avoidance of demands Increase in arousal or self-stimulation Means of accessing preferred activity or objects Need for social attention Psychosocial stressors Pursuit of power and control Reduction of arousal and anxiety Sensory problems Substance abuse

14. Expanded Health Maintenance Caregivers may not notice Patients may not complain Need to screen more Patients depend upon us to advocate for them and to help them identify what they need

15. Evaluate the caregivers needs Have they had a change in behavior, wellness or function? Training Respite In home support Funding Skills and tools to be good observers The opportunity to maximize their potential

16. Collect Data on Outcome Data collection forms Avoid PRN orders Identify goals of treatment Keep track of treatment failures Make implementation of care algorithmic with very explicit instructions Make sure to discontinue ineffective or harmful treatments Non-adherence is sometimes good

17. Clarissa Kripke, MD, FAAFP, Director Department of Family and Community Medicine, UCSF 500 Parnassus Ave, MU318, Box 0900 San Francisco, CA 94143-0900 (415) 476-4641 (office) odpc@fcm.ucsf.edu