EHDI Systems and the Medical Home

1. EHDI Systems and the Medical Home Carlos Quezada-Gomez, PsyD National Center of Medical Home Initiatives for Children with Special Needs American Academy of Pediatrics

2. What Is a Medical Home?

3. A Medical Home ensures that: Care is accessible family-centered comprehensive continuous coordinated compassionate culturally effective Primary care physicians serve as the medical home. A pediatric sub-specialist may be appropriate in complex cases.

4. Accessible Philosophically • Efforts made to meet needs of all patients and families Geographically • Care is provided in the child’s community Financially • All insurance, including Medicaid, is accepted and changes are accommodated

5. Family-centered Recognition that: • Family is the principal caregiver and the center of strength and support for children • Parents are experts on their own children and are a source of essential information • Unbiased and complete information is shared on an ongoing basis

6. Continuous • Same primary health care professionals are available from infancy through adolescence • Primary care physician assists with transitions - Hospital to home • - Home to school • - School to job or independent living • - Primary to secondary to tertiary medical care

7. Comprehensive • Preventive and primary care is provided • As part of coordinating the child’s care • makes contacts with all other providers, including audiologist, otolaryngologist, therapists, EI, & school • discusses needs for respite care, equipment, transportation, etc. • provides information on Title V, SSI, SCHIP • assesses emotional, educational & health status at each visit • provides written information on relevant issues and support groups

8. Coordinated • Makes referrals (and assists with setting up appointments) to sub-specialists as needed, including mental health • Families are linked to appropriate support, educational, and community-based services • Information from other service providers is centralized • Primary Care Physician communicates effectively and collaborates with all service providers on plan for child’s care • Participates in the IFSP or IEP by phone, letter, or in person

9. Compassionate • “Gets to know” the family & has a comfortable relationship • Makes an effort to understand the family’s needs • Concern for well-being of child and family is expressed and demonstrated • Families’ values, beliefs, and behaviors are respected

10. Culturally Effective • Uses interpreters where appropriate (including sign language) • Has materials translated into the families’ primary language • Attempts to understand families’ beliefs and customs

11. Shared Responsibility • Accepts responsibility for services rendered • Maximizes quality while minimizing cost • Ensures that all needed services are delivered and avoids duplication

12. EHDI and the Medical Home Birthing Hospital Audiology Parent Groups Mental Health PrimaryProvider Child/Family ENT 3rd Party Payers Deaf Community Early Intervention Programs Genetics Services for Hearing Loss

13. Addressing Medical Home Issues in Your Grant Application • Identify references in Application Guidance • MCHB Core Outcomes (p. 2) • Requirements for Narrative (p. 13) • Purpose of funding program (p. 20) • Review criteria (pp. 21-22) • Demonstrate your familiarity with the issues involved in linking EHDI with Medical Homes • Describe your plan for addressing the above issues • Link your plan to the evaluation procedures

14. Strategies to Link Screening to Medical Home • Identification of Medical Home provider prior to screening • Seamless transfer of results to the medical home • Involvement of primary care physicians in EHDI advisory groups

15. For More Information: The National Center of Medical Home Initiatives for Children with Special Needs Phone: 800/433-9016, ext 7081 Fax: 847/228-6432 Email: medical_home@aap.org

16. Technical Assistance Sunnah Kim Manager, Screening Initiatives e-mail: skim@aap.org phone: 847/434-4924 Amy Gibson Manager, Technical Assistance e-mail: agibson@aap.org phone: 847/434-4989

18. National Center of Medical Home Initiatives for Children with Special Needs(1999 - 2004)American Academy of Pediatrics

19. Funded by the Maternal and Child Health Bureau, Division of Children with Special Health Care Needs

20. National Center Projects • General Newborn Screening Recommendations • Project Universal Preschool Vision Screening • Medical Home Training Program • Universal Newborn Hearing Screening • Technical Assistance

21. Universal Newborn Hearing Screening • An AAP Task Force on Newborn and Infant Hearing was convened in Spring 1998 • Developed a policy statement endorsing universal newborn hearing screening in 1999 • AAP has 2 delegates to the Joint Committee on Infant Hearing • AAP endorsed the Year 2000 JCIH Position Statement

22. Technical Assistance • Specialized TA provided to help link screening to medical home • Provided by National Center staff to all who are involved in community-based initiatives to ensure children with special needs have access to a medical home • Mentoring program