1 The Medical Home Leadership Network: Family, Health Care and Community Collaboration for Children with Special Health Care Needs Kate Orville, MPH Co-Director Washington State Medical Home Leadership Network Center on Human Development & Disability University of Washington January 23, 2004 Community Health Plan of Washington 2004 Clinical Operations Meeting

2 Overview What is a medical home? The Medical Home Leadership Network Community medical home team activities How to get involved

3 What is a Medical Home? NOT a building but way of providing health care services that are: Family-centered Coordinated Comprehensive Continuous Accessible Compassionate & Culturally Sensitive

4 In a Medical Home… Children and their families receive the care that they need from a physician or other primary health care provider whom they know and trust. The pediatric health care professionals and parents act as partners to identify and access all the medical and non- medical services needed to help children and their families achieve their maximum potential.

5 Medical Home Basics Primary care and acute care Links/collaboration/referral with specialty care Maintenance of comprehensive central record of info about child Links to community programs Care coordination Assistance with transition

6 The Family Perspective “A 24/7 relationship with my physician and/or office staff who know my child and know her needs– who I can call any hour of the day, who are responsible, who listen and who care, who help me to feel competent about my knowledge and expertise when it comes to her care, who always ask “What can I do for you today?”. -- Mom of child with special needs

7 While all children can benefit from a medical home, it is particularly important for children with special health care needs and their families

8 Children with Special Health Care Needs “Children who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.” Adopted by the AAP (October 1998). McPherson M, Arango P, Fox HB, A new definition of children with special health care needs. Pediatrics 1998; 102:

9 It Takes a Village to Build a Medical Home Families and primary health care providers don’t have to do everything themselves Office staff, community partners, specialists, and health care administrators are available to help…

10 Medical Home and the Chronic Care Model Active, empowered patient/family Proactive practice team Supportive health care organization (information systems to ID patients, provide clinical support, reminders, incentives etc.) Links to and collaboration with community services and supports (family- to family support, public health etc)

11 How Do We Achieve a Medical Home for Every Child by 2010? MCHB/AAP: Need for state- based, systematic approach  National Medical Home Mentorship Network Washington State Medical Home Plan -Title V, WCAAP, Families,MHLN

12 WA State Medical Home Goals Families, providers, insurers, policymakers and others will understand and endorse the medical home concept Health care providers will have the skills and knowledge to provide medical homes Families will have the skills and knowledge to provide medical homes

13 Medical Home Leadership Network Statewide network of families and professionals who promote the availability and accessibility of medical homes for children and youth with special needs in their communities Supported by DOH MCHB CSHCN Program and US MCHB since 1994 Large, active advisory board Housed at UW Center on Human Development & Disability- Dr. Forrest C. Bennett, MHLN Director

14 MHLN Teams Volunteer Interdisciplinary- PHN, FRC, MD, Family+ Community-based Strengthen and leverage existing networks and activities

15 Washington State Medical Home Leadership Network Teams Northwest Regions King & Pierce Southwest Central East Regional Resource Teams (by MD team member) CHPW Member Center CHPW Affiliate Center Non-CHPW affiliate COWLITZ WAHKIAKUM PACIFIC GRAYS HARBOR GRAYS HARBOR JEFFERSON CLALLAM WHATCOM SKAGIT MASON LEWIS THURSTON SAN JUAN ISLAND SNOHOMISH KITSAP KING PIERCE KLICKITAT BENTON WALLA COLUMBIA GARFIELD ASOTIN WHITMAN FRANKLIN YAKIMA SKAMANIA CLARK OKANOGAN FERRY STEVENS PEND OREILLE PEND OREILLE SPOKANE LINCOLN ADAMS GRANT KITTITAS DOUGLAS CHELAN

16 MHLN Team Members : Promote the medical home concept and strategies to support medical homes Are well-informed, experienced resources for community colleagues Collaborate with other interested groups and provide technical assistance and consultation as time permits

17 MHLN Teams, with Support of Project Staff: Recruit team members Identify one or more barriers to medical homes to address Develop plan Identify needed technical assistance Implement plan Monitor activities Report at annual conference

18 Yakima Team Activities MHLN team active in development of Children’s Village – CV set up on medical home principles Presentations to local PCPs Family focus group on medical homes Co-developed medical home brochure in English and Spanish Local autism diagnostic team Early hearing and screening outreach

19 Kitsap County Team Activities Development of local resource packets for services for CSHCN Presentations to community primary care providers on community resources

20 Adams County Team Activities “Child Health Notes” Chart review of client charts at quarterly MH team meetings Presentations for parents and for physicians on medical homes Physician collaborating with CHPW on piloting new CSHCN program Presentation at AAP/Shriners “Every Child Deserves a Medical Home”

21 Add’l Team Activities Pilot parent advisory group in MD’s practice (Skagit) Down syndrome & EI presentation (Stevens) Newborn Hearing Screening Follow Up (Walla Walla, Yakima, Kitsap) Increase EI referrals for children with speech/language or autism concerns (Snohomish) Develop rotating list of pediatricians to accept CSHCN with no PCP (Clark) ID #s CSHCN by diagnosis in the county (Cowlitz)

22 Team Collaboration Benefits (1999 evaluation) Greater awareness of and use of community resources  “It’s increased my access and it’s increased my referral a lot, probably close to 100%” (MD)  “I feel more organized and competent that I know where to direct people” (MD)

23 Benefits cont. Greater access to MD community (PHNs, FRCs) Increased referrals (PHNs, FRCs) Enhanced credibility (all) Access to information & grant opportunities (all) Expanded sense of community and momentum (all)

24 DOH CSHCN Program Support for Collaboration between Medical Home Contractors - Examples Medical Home Toolkit & County Resource Lists (CCSN) Collaboration between family and professional organizations Adolescent Health Transition Notebook CHDD/CTU, Children’s Hospital, and Mary Bridge  increase own “medical homeness”  then share lessons learned with other tertiary care centers

25 Upcoming Activities Continue to identify and promote simple key activities and strategies to providers and families:  Care notebooks/organizers for families  Parent Advisory Groups  Care plans/written instructions for families How to make medical homes work for families from diverse backgrounds?

26 More activities Medical Home Website- links to:  community resources,  diagnosis specific care guidelines  patient handouts,  tips on setting up a family-friendly practice etc… Collaborate with health care plans to pilot ideas – teams very interested Develop new grants Annual Medical Home conference

27 Interested in Getting Involved? Contact your nearest local MHLN team under “community teams” Talk to Dawn Davis, CHPW Kate Orville, WA Medical Home Leadership Network, University of Washington WA CSHCN Program reps Leslie Carroll and Stacey DeFries See national medical home website:

28 Together we can do it— EVERY CHILD DESERVES A MEDICAL HOME !!