ensuring a medical home connection for new jersey children with hearing loss leslie beres-sochka...
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ENSURING A MEDICAL HOME CONNECTION FOR NEW JERSEY CHILDREN WITH HEARING LOSS
Leslie Beres-SochkaProgram Manager, Early Identification and Monitoring
Bonnie TemanPublic Health Nursing Consultant, Family Centered Care
ServicesSpecial Child, Adult and Early Intervention Services
New Jersey Department of Health and Senior Services
New Jersey Department of Health and Senior Services
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)
History of Hearing Screening
New Jersey Department of Health and Senior Services
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Risk-based screening has been replaced by Electrophysiological Universal Hearing Screening
Mandated Screening
New Jersey Department of Health and Senior Services
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)
Mandated Screening
New Jersey Department of Health and Senior Services
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
managementlink to EI case management
Mandated Universal Screening
New Jersey Department of Health and Senior Services
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
Hearing Loss Diagnoses in SCHS Registry
0
10
20
30
40
50
60
70
80
90
1999 2000 2001 2002 (prelim.)Child's Year of Birth
Num
ber
of Childre
n >1 yr6 mo - 1 yr
3-6 mobefore 3 mo
Age at Registration
Final counts for 2002 births can
not be determined yet
Number childrenregistered before age 1
New Jersey Department of Health and Senior Services
EHDI RegistryData 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
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
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
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
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
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
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
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
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
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
Schematic of SystemsReferral Sources
ChildFindProject DOE
Birth DefectsRegistry HSS
Families Community
Single Point of EntrySCHS - CMUs
Age: Birth – 3Presumptive/PotentialEligibilityParent consents to EI
Age: Birth – 3Child not appropriate forEI or parent refusedconsent
Age: 3-21
Service Coordination Case Management
New Jersey Department of Health and Senior Services
Schematic of SystemsService Coordination Case Management
Presumptiveeligibility
Assessment Dev,Med/Health, Family
IFSP meeting
IFSPImplementation
6 mo. review
Annual review
Potentialeligibility
Evaluate
Closed w/follow-up
Closed, nofollow-up, re-open if needs
develop
Eligible?
No
Yes
Family contacted bytelephone &/or letter
Intake conducted
Family offered CM services as ageappropriate &/or need driven by family
Information &referral
Indv. service plan developed
Periodic monitoring & follow-up
Closed, re-open
according toneed
New Jersey Department of Health and Senior Services
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
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
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)