Real Health Care Reform for People with Developmental Disabilities Alan Fox, M.P.A. The Arc San Francisco Clarissa Kripke, MD, FAAFP UCSF Dept. Family and Community Medicine

The Problem New population New population Aging parents Aging parents Lack of health surveillance and data Lack of health surveillance and data Lack of trained clinicians and infrastructure Lack of trained clinicians and infrastructure Complex medical and behavioral conditions Complex medical and behavioral conditions Higher prevalence of chronic disease Higher prevalence of chronic disease Functional limitations with inadequate accommodations Functional limitations with inadequate accommodations

Fact: Many people with DD live in the community but really aren’t outpatients in terms of: Their ability to partner with doctors Their ability to partner with doctors The types of medical problems they have The types of medical problems they have The intensity of the services they require The intensity of the services they require The degree of coordination and cooperation needed between various health care, family/caregiver and social support teams (e.g. interagency collaborations) The degree of coordination and cooperation needed between various health care, family/caregiver and social support teams (e.g. interagency collaborations)

Myth #1 When people who require institutional levels of care move to the community, they need more community-based services, but their health care needs remain substantially similar to that of everybody else.

Mainstream Primary Care Office Model Patient Medical Home Primary Doctor: Nurse Practitioner: Pharmacy:

Complex Chronic Care Patient Decision Maker Translator Patient Medical Home Primary Doctor: Nurse Practitioner: Pharmacy: Medical Specialists Allied Health Durable Medical Equipment Providers

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

Is a Community Based System of Care for Adults with DD Possible? Of course!.... but it doesn’t look like a mainstream practice: Staffing Staffing Training Training Services Services Scheduling Scheduling Policies and Procedures Policies and Procedures Documentation and Communication Documentation and Communication Specialty and interagency relationships Specialty and interagency relationships Mechanisms for accountability Mechanisms for accountability Funding Funding

What do we do for other SPDs? (Seniors and persons with disabilities) Switch goals to palliation Switch goals to palliation Neglect them Neglect them Institutionalize them Institutionalize them Develop special services, infrastructure and training programs (e.g. Geriatrics) Develop special services, infrastructure and training programs (e.g. Geriatrics)

Myth #2 If you get a client to a doctor’s office, something that improves health will happen. Fact: Doctors need a complex set of supports and social services in place and input into their design.

Patient Responsibilities Arranging funding Arranging funding Asking for help when ill Asking for help when ill Scheduling visits Scheduling visits Preparing information for visits Preparing information for visits Being on time Being on time Communicating Communicating Cooperating with medical evaluations Cooperating with medical evaluations Making informed consent decisions Making informed consent decisions Adhering to medical recommendations Adhering to medical recommendations +/- Finding specialists in your disability/condition +/- Finding specialists in your disability/condition

Myth #3 Supporting a client in the health system is something family members, professional caregivers, or natural supports can do well without any training, funding, or support. Fact: Supporting the health of a person with DD is time-consuming and physically and intellectually demanding.

Characteristics of Clients That Are Hard to Accommodate in a Mainstream Practice Difficulty waiting Difficulty waiting Behaviors that limit cooperation Behaviors that limit cooperation Special medical problems Special medical problems Complex interdisciplinary teams Complex interdisciplinary teams Dual diagnosis Dual diagnosis Can’t safely transfer to exam table within 5 or 10 minutes Can’t safely transfer to exam table within 5 or 10 minutes Diagnosis dependent on direct observation or very slow communication Diagnosis dependent on direct observation or very slow communication

Health Reform Vision All persons with developmental disabilities have access to health services that maximize their wellness and function.

Health Reform Project Partners The Arc of San Francisco Golden Gate Regional Center Family & Community Medicine department at UC San Francisco Health Plan of San Mateo Others

Health Reform Initial Funding $105,000The California Endowment $45,000Golden Gate Regional Center $25,000Mt. Zion Health Foundation Additional funding has been received by partners to pursue elements of the project.

Health Reform Current Funding $39,000UC Partnerships Council $75,000Wm. R. Hearst Foundation $100,000Special Hope Foundation This funding is used to sustain the reform effort and to begin pilot implementation of the CART model.

Health Reform Initial Accomplishments Convene multi-disciplinary collaborative Blind Spot white paper defines the scope of the health care problem Components of a Model System paper Cultural Competencies for Providers and Systems paper Conduct initial analysis of CDER data

Health Reform Current Accomplishments Establish Esperanza a specialized primary care health care clinic in San Mateo County Establish formal training for medical students, residents, and faculty Establish Office of Developmental Primary Care at FCM department Co-locate an Arc Health Advocate at San Francisco General Hospital

Health Reform Plans Establish consultation/teaching clinic in San Francisco county Establish Center of Excellence in developmental primary care Pilot implementation through 1115 Medi-Cal Waiver Funding through federal health care reform

Health Reform The CART model Clinical services and practice in university and community settings Clinical services and practice in university and community settings Advocacy to support the client/patient Advocacy to support the client/patient Research in health services to rigorously study the effectiveness of the model Research in health services to rigorously study the effectiveness of the model Training and technical assistance for medical professionals and caregivers Training and technical assistance for medical professionals and caregivers

Health Reform The CART model and Medi-Cal Establish mandatory Medi-Cal organized system of care Register all Medi-Cal recipients who have developmental disabilities Establish enhanced medical homes Provide for annual health assessment and surveillance Include Health Advocacy services

Office of Developmental Primary Care (415) (office)