Advocacy and Health Shriver Lecture 11 th Annual UCSF Developmental Disabilities Update Chief Operating Officer Advocacy and Health Who am I? Why am I here? Health and Developmental Disability CART model of health care reform Health Advocacy Who are you? Why are you here? Who am I? Why am I here? A professional A parent An advocate My professional hat Degrees in management and in international relations Private debt trader for Prudential Chief Operating Officer, Page 1
My professional hat Came to California in 1988 Licensing for Oracle Graduate school in public administration Consulting project in child support enforcement My professional hat Human services systems analyst for state governments Consulting practice San Francisco Department of Children, Youth & Their Families (DCYF) My professional hat A manager, analyst, administrator Corporate, public, and nonprofit sectors Sound management and human service A non-profit leader on the cutting edge My professional hat Management audit of Regional Center of Orange County Child Care Inclusion Challenge SafeStart Director at DCYF in 2001 Chief Operating Officer, Page 2
My professional hat Special needs portfolio systemsinvolved aka child welfare, juvenile justice, behavioral health, disabilities Assigned to High Risk Infant Interagency Council in 2002 by DCYF My parent hat Joe is born in 2000 Symptoms manifest throughout 2002 Unsuccessful hearing exam at SFCD clinic in March 2003 Examined by regional center and authorized for speech therapy in April 2003 based on presumptive eligibility My parent hat Unsuccessful enrollment in pre-school SFUSD observation and diagnosis rendered by SLP Joe is diagnosed July 8, 2003 days before his 3rd birthday Resident throughout lifespan in one of 10 autism clusters identified in California Chief Operating Officer, Page 3
Hard to get a diagnosis Diagnostic experience was long and traumatic SFUSD made the first formal diagnosis MRI prescribed by an osteopath Later confirmed at Lucille Packard and by Dr. Barbara Bennett at CPMC Hard to get a diagnosis Nine years in, I feel like a pretty good diagnostician, most parents do Idiosyncratic Squishy diagnostic criteria Has social, emotional and financial implications Which hat am I wearing? Wearing all three hats Unique perspective Why I am passionate about The Arc and the movement for building a better future for people with developmental disabilities Chief Operating Officer, Page 4
Our Mission To promote self-determination, dignity, and quality of life Our Vision A community where disability is a distinction without a difference. Support for Success The Arc offers services to live in the community successfully. Support for Success The Arc is a civil and human rights movement of advocates and selfadvocates. Chief Operating Officer, Page 5
The Lanterman system The Arc is part of the Lanterman system The Lanterman Act named for Sen. Frank Lanterman established this system This system is the only one of its kind in the U.S. The Lanterman system In California, people with developmental disabilities are entitled by the Lanterman Act to services funded by the state The entitlement depends on individual assessment and plan to meet identified needs, decisions are made by a team that includes the person and reflects their individual choices and preferences The Lanterman system The purpose is to provide supports to promote the independence and productivity of people with developmental disabilities and to approximate the living situation enjoyed by a person who does not have developmental disabilities The Lanterman system The entitlement is limited by budget, in other words, if there is no money to pay for what you are entitled to, then you are no longer entitled to it If a service or support is needed and can be provided through other funding, that ( generic ) funding must be used first Chief Operating Officer, Page 6
Developmental services promote independence, productivity, community, and safety Independent Living Employment and Job Placement Health Arts and Education Recreation and Socialization People with developmental disabilities need more than developmental services Income SSI and SSDI Housing In Home Supportive Services Health Insurance Medi-Cal and Medicare Health care has not been a priority of the developmental services system. The health care system has not served people with developmental disabilities well. Health Care for Children Family as advocate Pediatrician as provider Well developed system with good results This is not the fault of a person, or a profession, but of several systems. Chief Operating Officer, Page 7
Health Care for Transition Age and Adults Cumulative effect of lack of preventive care Family members aging, no longer available or appropriate advocate Need transition to family and community practice, but are they ready? Health and Developmental Disability New population with new health issues Getting younger and older Complex medical and behavioral conditions Chronic health care issues co-morbid with developmental disability Higher prevalence of chronic disease Health and Developmental Disability Relatively small but growing population with developmental disability high cost Lack of useful data on population health status and health outcomes Unstudied and undifferentiated population grouped as SPDs or Adults with Disabilities Health and Developmental Disability No formal sub-specialty to complement developmental pediatrics Few practitioners who feel qualified and willing to serve patients with developmental disability Inappropriate and inaccessible physical infrastructure Chief Operating Officer, Page 8
Myth #1 When people who require institutional levels of care move to the community, their health care needs remain substantially similar to that of everybody else. Fact: Many people with developmental disabilities live in the community but really aren t outpatients in terms of: Their ability to partner with doctors The types of medical problems they have The intensity of the services they require The degree of coordination and cooperation needed among health care, family/caregiver and social systems Myth #2 If you get a client to a doctor s office, something that improves health will happen. Fact: Doctors and patients need a complex set of supports and services in place and input into their design. 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 developmental disabilities is time-consuming and physically and intellectually demanding. Chief Operating Officer, Page 9
Typical Outpatient Responsibilities Arranging funding Asking for help when ill Scheduling visits Preparing information for visits Being on time Communicating Typical Outpatient Responsibilities Cooperating with medical evaluations Making informed consent decisions Adhering to treatment plans Finding specialists with knowledge of your disability or condition The CART vision: All people with developmental disabilities have access to health services that maximize their wellness and function. CART Executive Planning group: Jim Shorter, Dr. Clarissa Kripke, Dr. Mary Giammona, Dr. Megie Okumura, Alan Fox. We represent a diversity of professions and people because achieving this vision requires working across systems to change systems. We have met and worked together for years and have a lot of exciting results to share. Some of you are already aware, having been involved yourself in the work. Many others who have are not able to join us today. Chief Operating Officer, Page 10
CART Model of Health Care Reform Clinical services and practice Advocacy to support the client/patient Research to rigorously study the effectiveness of innovation Training and technical assistance for medical professionals and caregivers CART Model of Health Care Reform Problem: Lack of adequate physical and programmatic access to health care CART Solution: Clinic CART Model of Health Care Reform A clinic where medical students learn from trained practitioners in a dedicated setting universally adapted to the health care needs of patients with developmental disabilities. Advancing a new medical sub-specialty in developmental primary care. CART Model of Health Care Reform Problem: More transition age youth and adults needing support to manage their own health care CART Solution: Advocacy Chief Operating Officer, Page 11
CART Model of Health Care Reform A Health Advocate to provide technical assistance to clinicians, to coordinate services, and support people with developmental disabilities to perform the increasingly complex role of a patient in California s managed health care model. CART Model of Health Care Reform Problem: Lack of data on population health status and outcomes CART Solution: Research Independent, yearly health assessments to ensure early preventive identification of health issues, population health data, and evaluation of pilot reform efforts. CART Model of Health Care Reform Problem: Few trained family and community practitioners qualified and willing to serve patients with developmental disabilities CART Solution: Training & Technical Assistance CART Model of Health Care Reform An accredited curriculum as part of the graduate medical education of every primary care provider, with a practicum including adults with developmental disabilities. Chief Operating Officer, Page 12
Key Components of Health Advocacy Health Advocates partner with clients (patients), clinicians and caregivers to promote positive health changes through support, access, advocacy, medical case management, service coordination and communication. Key Components of Health Advocacy Patient and Caregiver Support Medical Case Management Wellness Transition Support Patient/Caregiver Support Assist with identifying when medical attention needed Provide support during exam room visit Emotional Information Communication Chief Operating Officer, Page 13
Patient/Caregiver Support Navigate basic mechanics of health care access and treatment Coordinate care with patient support team Partner to develop goals to achieve positive health outcomes Maintain Personal Health Record Medical Case Management Monitor/implement Health Action Plan Communicate health related information to multidisciplinary team Ensure patient support team understands and implements medical/health orders Communicate observations, concerns, changes to clinician Support/facilitate communication between patient and clinician Wellness Develop training and support services for patient and caregivers Provide individual and group health education, fitness classes, nutrition education Coordinate preventative care (e.g. flu shots) Wellness Advocate for patient needs, history and context Living situation Financial situation Motivation Learning and communication style Chief Operating Officer, Page 14
Transition Coordinate transitions during critical moments of elevated health risk: Transition age to adulthood Adulthood to end-of-life Change in residence or caregiver Change in level of care Transition Identify service needs and gaps Advocate for continuity and improvement in care CART: Where we have been Collaborative sustained for 5 years UC Community Partnership Council funding and Award for Excellence Health Advocate at SFGH Family Health Center for 2 years Office of Developmental Primary Care CART: Where we have been ODPC practicum at The Arc Clinical consultation for Health Advocates GME curriculum Advocated with Medi-Cal on Section 1115 Medicaid Waiver Advocating with all three county Medi-Cal health plans Chief Operating Officer, Page 15
Who are you? Why are you here? Are you ready to accommodate people with developmental disabilities at your primary care practice? Are you ready to partner with interdisciplinary patient teams? Are you ready to teach, learn, and specialize in developmental primary care? Who are you? Why are you here? You can connect with The Arc, with Office of Developmental Primary Care, and the CART collaborative You can advise on building a specialized clinic at The Arc You can raise awareness, yours and others You can join AADMD Mainstream Primary Care Office Model Patient Medical Home Primary Doctor: Nurse Practitioner: Decision Maker Patient Medical Home Primary Doctor: Nurse Practitioner: Medical Specialists Pharmacy: Pharmacy: Translator Allied Health Complex Chronic Care Patient Durable Medical Equipment Providers Chief Operating Officer, Page 16
Oversight Agencies Case Coordinators Decision Maker Patient Advocate Medical Home Primary Doctor: Nurse Practitioner: Pharmacy: Medical Specialists Dentist Patients with Developmental Disabilities Can Be Hard to Accommodate Vocational Day Insurance Social Service Other Translator Group Home Supervisor Primary Family Caregiver Residential Support Supervisor Direct Caregivers Allied Health Durable Medical Equipment Providers Interdisciplinary Health Care Team for a Patient with I/DD Difficulty waiting Behaviors that limit cooperation Complex medical problems Patients with Developmental Disabilities Can Be Hard to Accommodate Complex interdisciplinary teams Dual diagnosis Can t safely transfer to exam table within 5 or 10 minutes Diagnosis dependent on direct observation or very slow communication Office of Developmental Primary Care http://developmentalmedicine.ucsf.edu (415) 476-4641 (office) odpc@fcm.ucsf.edu Chief Operating Officer, Page 17
CART: Where we are going Thank you! Establishing clinics Esperanza, The Arc and?? Continuing advocacy with Medi-Cal and health plans Evaluating Health Advocacy Publishing research on population health Raising awareness and seeking support Chief Operating Officer, Page 18