creating a medical home with ehdi families karen ailsworth, md - wisconsin susan berry, md, mph -...
TRANSCRIPT
![Page 1: Creating a Medical Home with EHDI Families Karen Ailsworth, MD - Wisconsin Susan Berry, MD, MPH - Louisiana Dolores Orfanakis, MD - Oregon Sudeep Kukreja,](https://reader036.vdocuments.net/reader036/viewer/2022070404/56649f345503460f94c510b6/html5/thumbnails/1.jpg)
Creating a Medical Home with EHDI Families
Karen Ailsworth, MD - Wisconsin
Susan Berry, MD, MPH - Louisiana
Dolores Orfanakis, MD - Oregon
Sudeep Kukreja, MD - California
![Page 2: Creating a Medical Home with EHDI Families Karen Ailsworth, MD - Wisconsin Susan Berry, MD, MPH - Louisiana Dolores Orfanakis, MD - Oregon Sudeep Kukreja,](https://reader036.vdocuments.net/reader036/viewer/2022070404/56649f345503460f94c510b6/html5/thumbnails/2.jpg)
Characteristics of a Medical Home
• Accessible
• Continuous
• Comprehensive
• Family centered
• Coordinated
• Compassionate
• Culturally effective
![Page 3: Creating a Medical Home with EHDI Families Karen Ailsworth, MD - Wisconsin Susan Berry, MD, MPH - Louisiana Dolores Orfanakis, MD - Oregon Sudeep Kukreja,](https://reader036.vdocuments.net/reader036/viewer/2022070404/56649f345503460f94c510b6/html5/thumbnails/3.jpg)
Characteristics of a Medical Home
Condensed from Pediatrics, Vol 110, pages 184-186, Table 1.
![Page 4: Creating a Medical Home with EHDI Families Karen Ailsworth, MD - Wisconsin Susan Berry, MD, MPH - Louisiana Dolores Orfanakis, MD - Oregon Sudeep Kukreja,](https://reader036.vdocuments.net/reader036/viewer/2022070404/56649f345503460f94c510b6/html5/thumbnails/4.jpg)
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
![Page 5: Creating a Medical Home with EHDI Families Karen Ailsworth, MD - Wisconsin Susan Berry, MD, MPH - Louisiana Dolores Orfanakis, MD - Oregon Sudeep Kukreja,](https://reader036.vdocuments.net/reader036/viewer/2022070404/56649f345503460f94c510b6/html5/thumbnails/5.jpg)
Medical Home Initiatives
• Every Child Deserves a Medical Home
• Shriners Hospital –Houston, Texas
• October 2003
![Page 6: Creating a Medical Home with EHDI Families Karen Ailsworth, MD - Wisconsin Susan Berry, MD, MPH - Louisiana Dolores Orfanakis, MD - Oregon Sudeep Kukreja,](https://reader036.vdocuments.net/reader036/viewer/2022070404/56649f345503460f94c510b6/html5/thumbnails/6.jpg)
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
![Page 7: Creating a Medical Home with EHDI Families Karen Ailsworth, MD - Wisconsin Susan Berry, MD, MPH - Louisiana Dolores Orfanakis, MD - Oregon Sudeep Kukreja,](https://reader036.vdocuments.net/reader036/viewer/2022070404/56649f345503460f94c510b6/html5/thumbnails/7.jpg)
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
![Page 8: Creating a Medical Home with EHDI Families Karen Ailsworth, MD - Wisconsin Susan Berry, MD, MPH - Louisiana Dolores Orfanakis, MD - Oregon Sudeep Kukreja,](https://reader036.vdocuments.net/reader036/viewer/2022070404/56649f345503460f94c510b6/html5/thumbnails/8.jpg)
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
![Page 9: Creating a Medical Home with EHDI Families Karen Ailsworth, MD - Wisconsin Susan Berry, MD, MPH - Louisiana Dolores Orfanakis, MD - Oregon Sudeep Kukreja,](https://reader036.vdocuments.net/reader036/viewer/2022070404/56649f345503460f94c510b6/html5/thumbnails/9.jpg)
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
![Page 10: Creating a Medical Home with EHDI Families Karen Ailsworth, MD - Wisconsin Susan Berry, MD, MPH - Louisiana Dolores Orfanakis, MD - Oregon Sudeep Kukreja,](https://reader036.vdocuments.net/reader036/viewer/2022070404/56649f345503460f94c510b6/html5/thumbnails/10.jpg)
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
![Page 11: Creating a Medical Home with EHDI Families Karen Ailsworth, MD - Wisconsin Susan Berry, MD, MPH - Louisiana Dolores Orfanakis, MD - Oregon Sudeep Kukreja,](https://reader036.vdocuments.net/reader036/viewer/2022070404/56649f345503460f94c510b6/html5/thumbnails/11.jpg)
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
![Page 12: Creating a Medical Home with EHDI Families Karen Ailsworth, MD - Wisconsin Susan Berry, MD, MPH - Louisiana Dolores Orfanakis, MD - Oregon Sudeep Kukreja,](https://reader036.vdocuments.net/reader036/viewer/2022070404/56649f345503460f94c510b6/html5/thumbnails/12.jpg)
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”
![Page 13: Creating a Medical Home with EHDI Families Karen Ailsworth, MD - Wisconsin Susan Berry, MD, MPH - Louisiana Dolores Orfanakis, MD - Oregon Sudeep Kukreja,](https://reader036.vdocuments.net/reader036/viewer/2022070404/56649f345503460f94c510b6/html5/thumbnails/13.jpg)
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
![Page 14: Creating a Medical Home with EHDI Families Karen Ailsworth, MD - Wisconsin Susan Berry, MD, MPH - Louisiana Dolores Orfanakis, MD - Oregon Sudeep Kukreja,](https://reader036.vdocuments.net/reader036/viewer/2022070404/56649f345503460f94c510b6/html5/thumbnails/14.jpg)
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
![Page 15: Creating a Medical Home with EHDI Families Karen Ailsworth, MD - Wisconsin Susan Berry, MD, MPH - Louisiana Dolores Orfanakis, MD - Oregon Sudeep Kukreja,](https://reader036.vdocuments.net/reader036/viewer/2022070404/56649f345503460f94c510b6/html5/thumbnails/15.jpg)
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
![Page 16: Creating a Medical Home with EHDI Families Karen Ailsworth, MD - Wisconsin Susan Berry, MD, MPH - Louisiana Dolores Orfanakis, MD - Oregon Sudeep Kukreja,](https://reader036.vdocuments.net/reader036/viewer/2022070404/56649f345503460f94c510b6/html5/thumbnails/16.jpg)
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
![Page 17: Creating a Medical Home with EHDI Families Karen Ailsworth, MD - Wisconsin Susan Berry, MD, MPH - Louisiana Dolores Orfanakis, MD - Oregon Sudeep Kukreja,](https://reader036.vdocuments.net/reader036/viewer/2022070404/56649f345503460f94c510b6/html5/thumbnails/17.jpg)
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
![Page 18: Creating a Medical Home with EHDI Families Karen Ailsworth, MD - Wisconsin Susan Berry, MD, MPH - Louisiana Dolores Orfanakis, MD - Oregon Sudeep Kukreja,](https://reader036.vdocuments.net/reader036/viewer/2022070404/56649f345503460f94c510b6/html5/thumbnails/18.jpg)
![Page 19: Creating a Medical Home with EHDI Families Karen Ailsworth, MD - Wisconsin Susan Berry, MD, MPH - Louisiana Dolores Orfanakis, MD - Oregon Sudeep Kukreja,](https://reader036.vdocuments.net/reader036/viewer/2022070404/56649f345503460f94c510b6/html5/thumbnails/19.jpg)
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
![Page 20: Creating a Medical Home with EHDI Families Karen Ailsworth, MD - Wisconsin Susan Berry, MD, MPH - Louisiana Dolores Orfanakis, MD - Oregon Sudeep Kukreja,](https://reader036.vdocuments.net/reader036/viewer/2022070404/56649f345503460f94c510b6/html5/thumbnails/20.jpg)
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
![Page 21: Creating a Medical Home with EHDI Families Karen Ailsworth, MD - Wisconsin Susan Berry, MD, MPH - Louisiana Dolores Orfanakis, MD - Oregon Sudeep Kukreja,](https://reader036.vdocuments.net/reader036/viewer/2022070404/56649f345503460f94c510b6/html5/thumbnails/21.jpg)
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
![Page 22: Creating a Medical Home with EHDI Families Karen Ailsworth, MD - Wisconsin Susan Berry, MD, MPH - Louisiana Dolores Orfanakis, MD - Oregon Sudeep Kukreja,](https://reader036.vdocuments.net/reader036/viewer/2022070404/56649f345503460f94c510b6/html5/thumbnails/22.jpg)
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
![Page 23: Creating a Medical Home with EHDI Families Karen Ailsworth, MD - Wisconsin Susan Berry, MD, MPH - Louisiana Dolores Orfanakis, MD - Oregon Sudeep Kukreja,](https://reader036.vdocuments.net/reader036/viewer/2022070404/56649f345503460f94c510b6/html5/thumbnails/23.jpg)
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
![Page 24: Creating a Medical Home with EHDI Families Karen Ailsworth, MD - Wisconsin Susan Berry, MD, MPH - Louisiana Dolores Orfanakis, MD - Oregon Sudeep Kukreja,](https://reader036.vdocuments.net/reader036/viewer/2022070404/56649f345503460f94c510b6/html5/thumbnails/24.jpg)
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
![Page 25: Creating a Medical Home with EHDI Families Karen Ailsworth, MD - Wisconsin Susan Berry, MD, MPH - Louisiana Dolores Orfanakis, MD - Oregon Sudeep Kukreja,](https://reader036.vdocuments.net/reader036/viewer/2022070404/56649f345503460f94c510b6/html5/thumbnails/25.jpg)
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
![Page 26: Creating a Medical Home with EHDI Families Karen Ailsworth, MD - Wisconsin Susan Berry, MD, MPH - Louisiana Dolores Orfanakis, MD - Oregon Sudeep Kukreja,](https://reader036.vdocuments.net/reader036/viewer/2022070404/56649f345503460f94c510b6/html5/thumbnails/26.jpg)
What are Families Looking for in Professionals?
• Medical Home Initiatives
• Every Child Deserves a Medical Home
• Houston Shriners Hospital
• October 2003
![Page 27: Creating a Medical Home with EHDI Families Karen Ailsworth, MD - Wisconsin Susan Berry, MD, MPH - Louisiana Dolores Orfanakis, MD - Oregon Sudeep Kukreja,](https://reader036.vdocuments.net/reader036/viewer/2022070404/56649f345503460f94c510b6/html5/thumbnails/27.jpg)
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
![Page 28: Creating a Medical Home with EHDI Families Karen Ailsworth, MD - Wisconsin Susan Berry, MD, MPH - Louisiana Dolores Orfanakis, MD - Oregon Sudeep Kukreja,](https://reader036.vdocuments.net/reader036/viewer/2022070404/56649f345503460f94c510b6/html5/thumbnails/28.jpg)
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
![Page 29: Creating a Medical Home with EHDI Families Karen Ailsworth, MD - Wisconsin Susan Berry, MD, MPH - Louisiana Dolores Orfanakis, MD - Oregon Sudeep Kukreja,](https://reader036.vdocuments.net/reader036/viewer/2022070404/56649f345503460f94c510b6/html5/thumbnails/29.jpg)
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
![Page 30: Creating a Medical Home with EHDI Families Karen Ailsworth, MD - Wisconsin Susan Berry, MD, MPH - Louisiana Dolores Orfanakis, MD - Oregon Sudeep Kukreja,](https://reader036.vdocuments.net/reader036/viewer/2022070404/56649f345503460f94c510b6/html5/thumbnails/30.jpg)
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
![Page 31: Creating a Medical Home with EHDI Families Karen Ailsworth, MD - Wisconsin Susan Berry, MD, MPH - Louisiana Dolores Orfanakis, MD - Oregon Sudeep Kukreja,](https://reader036.vdocuments.net/reader036/viewer/2022070404/56649f345503460f94c510b6/html5/thumbnails/31.jpg)
www.medicalhomeinfo.org