ENSURING A MEDICAL HOME CONNECTION FOR NEW JERSEY CHILDREN WITH HEARING LOSS

1. ENSURING A MEDICAL HOME CONNECTION FOR NEW JERSEY CHILDREN WITH HEARING LOSS Leslie Beres-Sochka Program Manager, Early Identification and Monitoring Bonnie Teman Public Health Nursing Consultant, Family Centered Care Services Special Child, Adult and Early Intervention Services New Jersey Department of Health and Senior Services

2. History of Hearing Screening New Jersey Department of Health began hearing screening of newborns in 1980 Originally risk-based screening Hearing Screening is required by NJ law (P.L. 2001, c.373, NJSA 26:2-101 et seq.) and rules (NJAC 8:19 subchapter 1) New Jersey Department of Health and Senior Services

3. Mandated Screening • Phase-in period had been given to facilities • May 15, 2000 - December 31, 2001: • risk factors for hearing loss; infants with risk must have electrophysiological screen • Law/rules specify confidentiality of reports • Risk-based screening has been replaced by Electrophysiological Universal Hearing Screening New Jersey Department of Health and Senior Services

4. Mandated Screening Effective January 1, 2002 ALL newborns must be screened using an electrophysiological screening device Under NJ rules, the responsibilities of birthing facilities, physicians, and midwives are specified Screening results are reported to DHSS via the Electronic Birth Certificate (EBC) New Jersey Department of Health and Senior Services

5. Mandated Universal Screening • Diagnostic Evaluation - should be completed by 3 months of age • Results must be reported to EHDI Program using the Follow-up form • Children with hearing loss must be registered with the Special Child Health Services (SCHS) Registry • link to SCHS county case management • link to EI case management New Jersey Department of Health and Senior Services

6. Special Child Health Services Registry New Jersey legislation enacted in 1983 (NJSA 26:8-40.21) requires that all children with a birth defect diagnosed by 1 year of age be reported to the state Special Child Health Services Registry Hearing loss at any age (up to 21) is required to be reported to the Registry Registered cases are referred to the county-based case management system within 10 days of receipt of registration Registrations are entered into a SAS database New Jersey Department of Health and Senior Services

7. Hearing Loss Diagnoses in SCHS Registry Age at Registration Number children registered before age 1 Final counts for 2002 births can not be determined yet New Jersey Department of Health and Senior Services

8. EHDI Registry Data Sources • Electronic Birth Certificate - Data on type of screening, results, demographics, risk factors, future source of pediatric care. • Follow-up forms - Data on outpatient testing results reported on standard forms are entered into EHDI database. • Special Child Health Services Registry - Data provides confirmation of diagnosis and age at diagnosis. • Early Intervention database - Data on EI enrollment, age at enrollment and services being received. New Jersey Department of Health and Senior Services

9. EHDI Program Linkages to the Medical Home • Currently investigating using the EBC information on baby’s provider to send letters inquiring about children known to have missed or failed screening for whom follow-up care has not been reported • AAP Chapter Champion for Newborn Hearing Screening, Dr. Michael Graff, has been identified and will soon aid the EHDI program in bringing screening and follow-up messages to pediatricians statewide • Follow-up report forms were revised to include the name of the baby’s physician for inclusion in the tracking database • Follow-up report form revisions also include printing as a triplicate form with a copy to go to the baby’s primary care provider to ensure communication of results New Jersey Department of Health and Senior Services

10. Early Intervention System • As the single point of entry, a county-based Special Child Health Services Case Management Unit is contacted by the parent/guardian or other referral source (with parental consent) • A service coordinator is assigned to each family referred for early intervention • The service coordinator will provide general information about SCHS and Early Intervention, explain the family’s rights, gather basic information about the child and family, and answer the family’s questions • Early Intervention is voluntary and requires parental consent for participation HOW TO ACCESS EARLY INTERVENTION New Jersey Department of Health and Senior Services

11. Early Intervention Database • The EI program uses the FACTORS system for record-keeping, reporting, and coordination of services in the IFSP plan. It is a software system with one database shared by a variety of DHSS agencies. • Data elements in FACTORS: • Demographics: Child’s name, address, SSN, DOB, gender, ethnicity, county of residence, phone number, presumptive diagnosis, and primary language. • Case Status: IFSP status (i.e. completed, interim), date of referral, reason for case closing, and referral source. • Service Coordination Activities: Date of service, type of service, service setting, program providing service, staff providing service. • Funding Sources: Third party sources of primary and secondary insurance including Medicaid and special EIS funding sources. New Jersey Department of Health and Senior Services

12. Case Management Purpose To assist children, age birth to 21 years, to access family centered, coordinated services for handicapped children and those at risk for developmental delay New Jersey Department of Health and Senior Services

13. Case Management Description • Decentralized, one in each of the 21 counties • reflects uniqueness of local areas • better utilization of resources • Primary focus is medical, but also involved in social aspects of care • Jointly funded by MCH Block Grant funds and County Freeholders • Contact with families within 7 days • 1993: case managers begin to serve as entry into EIP services New Jersey Department of Health and Senior Services

14. Case Management Focus • Primary care provider/other involved professionals contacted in order to coordinate services • Referrals made for identified needs • Individual Service Plans developed • Help families to advocate through various agencies New Jersey Department of Health and Senior Services

15. Case Management Services • Healthcare resources - medical/dental, developmental, educational, rehabilitative, social-emotional-economic • Assist families obtaining access to a medical home • Single point of entry for early intervention services • Information and referral to State and Federal programs, such as: Child Evaluation Centers, SSI, NJ FamilyCare (CHIP), Catastrophic Illness in Children Relief Fund program, Division of Developmental Disabilities (DDD), etc. New Jersey Department of Health and Senior Services

16. Case Management Services - 2 • Assistance with obtaining hearing aids and prosthetic devices • Assistance with obtaining drugs for asthma and cystic fibrosis • Assistance with transition to adulthood, helping families navigate between systems • Advocacy for child/parent dealing with multiple systems • Rehabilitation resources • Parent-to-Parent support and/or referral to support groups New Jersey Department of Health and Senior Services

17. Case Management Statistics 2002 Service Statistics: • 11,000 children served • 8,000 individual service plans developed • 6,500 referrals made to EIP • 300 referrals made to Catastrophic Illness in Children Relief fund • 60 children received hearing aid assistance: • paid for 103 hearing aids with molds (50 children w/ bilateral aids, 3 w/ unilateral aids) • paid for repairs on 2 hearing aids • paid for molds only for 5 children New Jersey Department of Health and Senior Services

18. Schematic of Systems New Jersey Department of Health and Senior Services

19. Schematic of Systems New Jersey Department of Health and Senior Services

20. Assistance with Hearing Aids • $160,000/year is allocated to cover the cost or partially cover the cost of appliances for all children who meet eligibility criteria • The case manager/service coordinator and the families fill out socio-economic forms • Proof of income, 3 consecutive pay stubs or most current 1040 for all contributing members of the household are submitted • Vendors estimate, from approved state vendor, who charges the state the wholesale price of the hearing aid plus a dispensing fee. Audiologists report and medical clearance are required. New Jersey Department of Health and Senior Services

21. Assistance with Hearing Aids - 2 • All information is sent to the nurse consultants and the Department of Health and Senior Services Special Child, Adult and Early Intervention Services program • Based on that information, a sliding fee scale is applied to determine amount of family participation, if any • Sliding fee scale is based on family size: • Case Management scale is for families below 300% of poverty • Early intervention scale goes to 350% of poverty (in line w/ State CHIP program, and currently being reviewed) • All children are registered by the case manager/service coordinator with the birth defects registry (if this has not already occurred) New Jersey Department of Health and Senior Services

22. Medicaid Managed Care Alliance • In 1995 the State of New Jersey initiated a program of mandatory enrollment in health maintenance organizations for the majority of Medicaid consumers • This program is referred to as Jersey Care 2000+ • Mandatory enrollment of the aged, blind and disabled population started in October 2000 and mandatory auto assignment begin in Spring 2002 • SCHS began a partnership between the case management units, the State, and the Medicaid HMOs • Meetings are held regularly to discuss and resolve any issues. Case managers have access to the care coordinators at the HMOs, which enables them to better advocate for their clients • A tool was developed to assist families to navigate the Medicaid managed care system (in English and Spanish) New Jersey Department of Health and Senior Services