Creating a Medical Home with EHDI Families Karen Ailsworth, MD - Wisconsin Susan Berry, MD, MPH - Louisiana Dolores Orfanakis, MD - Oregon Sudeep Kukreja, MD - California

Characteristics of a Medical Home Accessible Continuous Comprehensive Family centered Coordinated Compassionate Culturally effective

Characteristics of a Medical Home Condensed from Pediatrics, Vol 110, pages , Table 1.

Accessible In the child’s community Accepts all insurance, including Medicaid Accessible by public transportation Physically accessible and meets ADA Act 10 requirements Families are able to speak with the physician directly, if needed

Medical Home Initiatives Every Child Deserves a Medical Home Shriners Hospital –Houston, Texas October 2003

Barriers to Accessing Services Differences among services to access services and resources No single point of entry Separate criteria for eligibility No single agency/organization responsible General unwillingness to share $ /resources

Possible Additional Barriers Fragmented/categorized systems of care Systems and health care professionals not linked Different needs-different services Different languages(professional, cultural) Geographic location and transportation

Accessible for EHDI Infants Hospital Community Office systems and culture –TTY, TDD, bilingual, interpreters –Summary sheet, problem list –Chart preview/review State systems –Combine met/gen, immunizations –Tracking –Advisory committee –Quality assurance

Continuous Same health care professionals available from infancy through young adulthood Assistance with transitions in the form of developmentally appropriate assessments and counseling Medical home physician participates to the fullest extent allowed in care and discharge planning when the child is hospitalized by another provider

Continuous for EHDI Patients How often birth to adolescence? –State tracking systems HL on problem list Care plan partners identified –EHDI guidelines chart Parent act as partners updating info Infants at increased risk for HL Meet with your area EI reps Transitions

Family Centered Family is recognized as principal caregiver and center of support for child, and as the expert in their child’s care Mutual responsibility and trust exist between family and physician Families and physicians share in decision making Clear, unbiased and complete information and options are shared on an ongoing basis with the family

Family-Centered for EHDI Families Pediatricians can have input into the IFSP (Individual Family Service Plan) and request a copy IFSP should reflect family’s needs and choices regarding amplification and communication strategies Advocate for early intervention “in the natural environment” to facilitate communication, as Part C (local early intervention program) requires, with the interventionist as the “coach”

Comprehensive Medical, educational, developmental, psychosocial, and other service needs are identified and addressed Information is provided on private and public resources Physician facilitates all aspects of care Extra time is scheduled for appointments for children with special health care needs, when indicated

Comprehensive for EHDI Families Allow extra time for appointments Interact with Part C team Monitor satisfaction with services Provide developmental monitoring to assess need for additional services Provide pediatric subspecialty referral; ensure recommendations are followed Ensure aided children receive frequent audiology follow-up with pediatric trained audiologist

Coordinated A plan of care is developed and coordinated through the medical home An accessible central record or database with pertinent medical information is maintained at the practice

Coordinated for EHDI Families Obtain hearing screening results Develop a care plan that includes the audiologist, sub-specialists, and early interventionists Interact with the Part C Team Identify funding for aids Assure that medical and intervention plans have been implemented Develop a knowledge of community services and resources for deaf children and their parents Consider adding a care coordinator to your office staff

Challenges to Coordinated Reimbursement for care coordination (try team conference (99361&2), phone conference ( ), prolonged service (99354&5) Lack of knowledge about resources Lack of communication between providers Time to attend IFSP meetings Knowledge about IFSP meeting times Existence of multiple care coordinators

Care Coordinators Usually a nurse or social worker With knowledge of medical and community resources Can be full or part-time Meets with CSHCN families regularly to assess needs May be available to attend IFSP meetings Funded through Title V funds in some states

Compassionate Concern for the family and child is expressed verbally and nonverbally Efforts are made to empathize with the feelings and perspectives of the family

Culturally Effective Child’s and family’s cultural background, beliefs, and customs are recognized, valued, respected and incorporated into the care plan All efforts are made to ensure that the family understands the medical encounter and the care plan Written materials are provided in the family’s primary language

Compassionate and Culturally Effective for EHDI Families Unbiased information about options should be made available The family’s communication choices should be respected and supported while ensuring that services are adequate –Respect deaf culture preferences that may differ from your own

Compassionate and Culturally Effective for EHDI Families Provide frequent follow-up with extra visit time to assess adequacy and satisfaction with services Consider providing TDD for your office Have access to a translator Consider reading level in providing written materials Consider adding a parent liaison to your office staff

Barriers to Compassionate and Culturally Effective Little experience with deaf patients/deaf community Lack of knowledge about community resources Lack of knowledge about ADA requirement to provide a translator/ lack of availability Time/ lack of reimbursement

Parent Liaisons Parent of a deaf child or a child with a chronic health condition May be contracted from Family Voices or other parent support organization which provides training Usually part-time Interact and support families in various ways Bring suggestions to clinic staff from parent’s point of view

What are Families Looking for in Professionals? Medical Home Initiatives Every Child Deserves a Medical Home Houston Shriners Hospital October 2003

Physicians and Parents Ranking of Services Services Physicians’ rank Parents’ rank Respite Care Day care Parent support groups Help with behavior problems Financial information or help After school child care Assistance with physical household changes Vocational counseling Psychological services Homemaker services Recreational opportunities Information about community resources Dental care Summer camp

Physicians and Parents Ranking of Services Services Physicians’ rank Parents’ rank Respite Care 1 9 Day care 2 21 Parent support groups 3 3 Help with behavior problems 4 10 Financial information or help 5 2 After school child care 6 20 Assistance with physical 7 15 household changes Vocational counseling 8 6 Psychological services 9 5 Homemaker services Recreational opportunities 13 4 Information about community 14 1 resources Dental care 16 8 Summer camp 19 7

Kurtzer -White First Connections 291 RI pediatricians surveyed -Birth-5 with HL 54-65% -PCP has primary responsibility: –Medical Home –Follow up –Planning –Parent support –Referrals –Intervention –Coordination

Medical Home Task Force (RI) N = 95