E.2.c.v Children with Special Health Care Needs 

The population domain of CSHCN includes NPM #11 and #12 which were covered in the previous Adolescent / Young Adult Health domain and SPMs 3, 4 and 5 which impact NOMs 13, 15, 16, 17, 18, 19, 20, 21 and 22.

Annual Report (Last Year's Accomplishments)

State Performance Measure 3:

Provisional data indicates that for 2020, 76.2% of infants not passing initial newborn hearing screening at birthing hospitals had out-patient audiological follow-up documented. Since follow-up exams are still occurring on children born at the end of 2020, we expect that the rate will increase when final data is available. We anticipate the final rate will be level with prior years and will exceed the target.

Table SPM #3: Percentage of newborns who are discharged from NJ hospitals, reside in NJ, did not pass their newborn hearing screening and who have outpatient audiological follow-up documented.

*Note – Data for 2020 is incomplete. Follow-up reports are still being received for these children and the final rate is expected to exceed this rate

The Early Hearing Detection and Intervention (EHDI) program is responsible for assuring newborn hearing screening goals are met, including assuring timely and ear-specific audiological follow-up for children that did not pass initial screening. All outpatient audiologic reporting to the EHDI program continues to be submitted via an EHDI module in the New Jersey Immunization Information System (NJIIS) registry. The NJIIS program had a complete system rebuild and the EHDI module was also modified to improve information collected about follow-up contacts to parents.

• EHDI trained 3 new users in 2020 on the EHDI reporting module in the NJ Immunization Information System (NJIIS) which is used by audiologists and other practitioners who are conducting hearing follow-up to report outpatient exams. The EHDI program receives approximately 89% of reports entered by providers through this Web-based application and the rest are sent to the program on paper forms.

• NJ DOH continued use of HRSA EHDI grant funding for county-based special child health services case management staff to conduct follow-up phone calls to parents and physicians of children in need of hearing follow-up.

• Continued use of HRSA EHDI grant funding for one of the Early Intervention (EI) program’s Regional Early Intervention Collaborative’s (REIC) to provide two part-time consultants who specialize in working with Deaf and Hard of Hearing children . They have an initial phone conversation with parents of children who have recently been diagnosed with hearing loss to review EI services and discuss communication options for these children t. The consultants participate in the initial EI family meetings via remote access, using laptops with web-cameras. The consultants served a total of 113 families during this year.

• The EHDI Monthly Reconciliation Report is distributed to individual hospitals detailing children still in need of additional audiological follow-up after not passing inpatient hearing screening. This serves as a notice to hospitals of babies still in need of reminder contact. In addition, a report including statistics comparing the individual hospital to statewide statistical averages is sent annually.  

• Continued annual distribution of a report to provide audiology facilities with feedback on the timeliness of follow-up for children seen at their facility after not passing inpatient hearing screening. The report also includes statistics on the timeliness and completeness of the documentation of their results.

• The Hearing Evaluation Council, a Commissioner appointed advisory board to the NJ EHDI program, held three meetings during this year. The HEC is made up of physicians (a pediatrician and otolaryngologist), an audiologist, a child of Deaf or Hard of Hearing adults, a member of the Deaf community, a Hard of Hearing individual, and NJ residents interested in the welfare of Deaf and Hard of Hearing Children (including a parent of Deaf and Hard of Hearing children and a teacher of the Deaf and Hard of Hearing).

• The NJ Stakeholders (NJSH) group, a new HRSA grant initiative, held four meetings this year. The NJSH group is made up of providers who work in the EHDI system and parents of Deaf/Hard of Hearing children, including audiologists, Early Intervention providers, the NJ Part C Coordinator liaison, Teachers for the Deaf/Hard of Hearing, a cochlear implant provider, case managers, and DOH EHDI staff.

• The NJ Statewide Network for Cultural Competency’s Annual Conference, entitled ‘Building Bridges, Breaking Barriers & Cultivating Cultural Competency with the Diverse Deaf and Hard of Hearing Community’ was held in April 2021 and focused on cultural competency services for Deaf and Hard of Hearing people. The target audience for this conference was service providers such as nurses, social workers, and case managers. The conference is supported by SCHEIS and EHDI staff have served as valuable resource in this effort.

• NJ EHDI has entered into a three-year Memorandum of Understanding with the NJ Department of Human Services’ Leveling the Playing Field (LTPF) initiative to enhance the NJ EHDI Deaf Mentor Program. Funding for this initiative provides access to appropriate language role models for Deaf and Hard of Hearing children (from birth to age 5) whose families have selected American Sign Language (ASL) as a primary mode of communication.  LTPF seeks to enhance New Jersey Early Intervention Services and early childhood education by having ASL fluent paraprofessionals interact with Deaf and Hard of Hearing children in the same way hearing childcare workers are interacting with hearing children in their center. The goal is to provide full access to language throughout the child’s day.

Between 2018 and 2019, the EHDI program participated in various activities and collaborations to benefit families and professionals, including a Central Jersey Family Health Consortium project funded by the National CMV Foundation. The Hearing Evaluation Council and the NJ EHDI program advisory board worked with the Consortium to increase awareness of the risk of CMV infection in young children among health professionals, service providers, and parents, and provided prevention education.

Other recent educational programs included a NJ EHDI Pediatric Hearing Health Care webinar entitled “How to Detect Vision Issues in Deaf and Hard of Hearing Children”, presented to NJ’s audiologists by a Deafblind Specialist with the NJ Center on Deaf-Blindness and a Deaf Sensitivity training for Family Health Services staff.  Additionally, a poster presentation entitled “Mother’s Place of Birth and Hearing Screening Follow-Up” was given at the 2019 National Early Hearing Detection and Intervention Conference in Chicago, Illinois.

Programs for families included the CARE Project Family Retreat, which hosted more than sixty Deaf and Hard of Hearing children and their families and was co-chaired by the NJ EDHI audiologist; and the first NJ SKI HI training weekend, hosted by SPAN Parent Advocacy Network, for participants of the NJ Deaf Mentor program with grant funds from NJ EHDI.

 b. Annual Report (Last Year's Accomplishments)

State Performance Measure 4:

NJ has been very successful in linking children registered with the Birth Defects and Autism Registry (BDAR) (also known as the Special Child Health Services Registry) with services offered through our county-based Special Child Health Services Case Management Units (CMUs). The Case Management Referral System (CMRS) is used by the CMUs to track and monitor services provided to the children and their families. It electronically notifies a CMU when a child living within their county has been registered and released for follow-up. Also included in CMRS is the ability to create and modify an Individual Service Plan (ISP), track services, create a record of each contact with the child and child’s family, create standardized quarterly reports and register previously unregistered children.

State Performance Measure 4:  Percent of live children registered with the Birth Defects and Autism Reporting System (BDARS) who have been referred to NJ’s Special Child Health Services Case Management Unit and who are received services.

Note: Beginning in 2014, definitions and inclusion criteria were expanded. The numerator reflects all children whose record has any of the five following criteria for services:

1. Case closed within FFY with a reason of “goals achieved”,

2. Child referred to Early Intervention within FFY,

3. Individual Services documented with a begin and/or end date within FFY,

4. Individual Service Objectives documented with a perform date within FFY, and

5. Case Management Actions (excluding any letter correspondence that is part of an initial letter series) documented with a date performed within FFY.

These children must have received any of these services within a given FFY and registered with the BDARS (registration date not restricted to FFY).

The denominator represents the number of children served by SCHS Case Management in FFY who had been registered with the BDARS regardless of registration date (i.e., the numerator) plus any additional children who were registered and released to case management within a given FFY but did not receive services as currently defined.

CMRS allows CMUs to receive registrations in real time, enables faster family contact, and more rapidly assists a registered child in gaining access to appropriate health and education services.

BDAR and FCCS staff collaborate to improve the functionality, ease of use and efficiency of the system.

FCCS staff revised annual site visit audits to include protocol-based review of electronic records in CMRS. In these electronic record reviews, staff assessed key functions and expectations of the CMUs and evaluated Individual Service Plans to assess linkage to services. FCCS staff continues to review electronic documentation of the six key performance indicators (e.g., medical home, transition to adulthood), with an expectation of refining how this information is collected within CMRS.

b. Annual Report (Last Year's Accomplishments)

State Performance Measure 5:

State Performance Measure 5: Average age of initial diagnosis for children reported to the NJ Birth Defects & Autism Reporting System (BDARS) with an Autism Spectrum Disorder.

In FY 2020, over 3,400 children with a diagnosis of autism were newly reported to the BDARS.  The average age of initial autism diagnosis is 4.9 years old. This indicates a significant decline from the previous four years (SFY2016-2019) when the average ages were approximately 5.2 years.  While this indicator considers the age when the child is first diagnosed, it includes all children reported during that year.  Since the Registry mandates the reporting of all children through their 22nd birthday, previously diagnosed older children are sometimes registered for the first time. Since the Registry began in 2009, previously diagnosed children are continually being registered by their primary care providers, and newly seen specialist such as behavioral and mental health providers.  Therefore, we also calculated the average age of diagnosis for children born between 2006 and 2012.  The average age of diagnosis for this group is 4.6.  These younger birth cohorts may be getting diagnosed earlier as enhanced screening efforts and public awareness have increased.

Staff has also stressed the importance of quickly reporting children diagnosed as having autism by continuing to provide outreach about the Autism Registry through conference presentations and other meetings. Staff participated in several exhibits including the Annual School Health Conference sponsored by the NJ Chapter of the AAP, the Annual Autism New Jersey Conference and continue to meet with of private pediatric offices newly identified providers. Providers with untimely reporting are contacted and reminded of the mandate to report and the important linkage to SCHS CMUs.

One of the most important changes that occurred this year was a shift in the BDARS which greatly reduced the burden on our reporting agencies and improved the efficiency of the system.  The improved system allows providers to verify if a child had already been registered for another provider.  This is significant as our mandate requires that all children 0-22 with an ASD are registered.  Children see many health care providers, and each one would need to verify registration or register the child.  With the new system, health care providers can simply search the system for a child; thus, greatly reducing the number of duplicate registrations.  Moreover, if a child had been registered with non-autism diagnoses, their providers can now just add the new autism diagnosis and review and update the child’s current contact information.  Additionally, the autism data collection pages have been redesigned to provide more check-off options rather than asking providers to use text fields to provide information about comorbidities, symptoms, and other pertinent information.