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 184-186, 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 (99371-3), 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 resourcesDental care Summer camp

Physicians and Parents Ranking of Services

Services Physicians’ rank Parents’ rank----------------------------------------------------------------------

Respite Care 1 9Day care 2 21Parent support groups 3 3Help with behavior problems 4 10Financial information or help 5 2After school child care 6 20Assistance with physical 7 15 household changes Vocational counseling 8 6Psychological services 9 5Homemaker services 10 22Recreational opportunities 13 4Information about community 14 1 resourcesDental care 16 8Summer 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)Practice Participates in IFSP Process

0

10

20

30

40

Rating

Num

ber o

f Res

pons

es

N = 95

www.medicalhomeinfo.org