Adolescent / Young Adult Health
The domain of Adolescent/Young Adult Health includes focuses on NPM #9: Bullying (Percent of 9-12th graders who reported being bullied on school property or electronically bullied), NPM #11 (Percent of children with and without special health care needs having a medical home) and NPM #12 (Percent of children with and without special health care needs who received services necessary to make transitions to adult health care). Because reporting on NPM #11 and #12 overlap the two domains of Adolescent/Young Adult Health and SCHCN, the narrative for NPM #11 and #12 will be presented in this Adolescent/Young Adult Health section and not repeated in the CYSHCN Section. This section serves as the state’s narrative plan for the Application year and as the Annual Report for the reporting year. Planned activities for the Application year are described and programmatic efforts summarized that have been undertaken for the Annual Report year, with primary emphasis placed on the performance impacts that have been achieved. The strategies and activities to address the identified priorities from the Needs Assessment Summary are further described.
Annual Report - NPM #9: Bullying
Improving NPM #9 (Bullying) is an important measure on the domain of Adolescent/Young Adult Health (AYAH) and is related to SPN #4 Promoting Youth Development and SPN #5 Preventing Teen Pregnancy. Bullying can impact both short and long term physical and emotional health in adolescents and young adults. Bullying can lead to physical injury, social problems, emotional problems, increased risk taking behaviors and death.1. Teens who are bullied are at increased risk for mental health problems, have problems adjusting to school and is connected to absenteeism.2 Bullying also can cause long-term damage to self-esteem.3
Through the CAHP multiple efforts are made to decrease bullying in schools and build the social emotional learning (SEL) competencies of both youth who are bullies and are bullied. Building youth capacity for self-awareness, social awareness, self-management, relationships and decision-making helps build the core skills that teens need to refrain from bullying others and bounce back when they are bullied. According to CASEL, these skills allow children to calm themselves when angry, initiate friendships, resolve relationship conflicts respectfully, and make ethical and safe choices. To develop these capacities, children need to experience safe, nurturing, and well-managed environments where they feel valued and respected; to have meaningful interactions with others who are socially and emotionally competent; and to receive positive and specific guidance.
The Teen Outreach Program (TOP®), a nationally replicated SEL program evidenced to reduce teen pregnancy, school suspension and cutting class while increasing academic success, life skills and civic responsibility is replicated in over 50 schools throughout NJ and on CASEL’s list of supported SEL programs. TOP® links teens from diverse backgrounds and groupings within schools and facilitates dialogues that promote teens to be introspective, connect with their peers, partner with adults and participate in bettering their communities. Because TOP® is an evidence based program, data is collected via pre and post surveys delivered to participants that measure in particular to bullying: teens connectedness (empathy, self-awareness and social awareness) and resiliency (emotion management, self-efficacy and self-management) which lead to improved decision making and relationships. Thus far, implemented in NJ since 2012, TOP® has shown to improve connectedness and resiliency in NJ teens.
Bullying is a learned behavior which often starts at home, learned from older siblings, extended family and parents and then transferred to school behaviors. Youth who are bullies are at increased risk for substance use, academic problems, and violence to others later in life; and teens who are both bullies and victims of bullying suffer the most serious effects of bullying and are at greater risk for mental and behavioral problems than those who are only bullied or who are only bullies.2 To impact this, CAHP implements multiple parent engagement programs that help parents better understand and support their teens. Connection to a supportive adult has been associated with decreased drug use, delayed initiation of sex, and fewer suicide attempts in teens. Key risk factors for teen decision-making include family-related protective factors such as positive values and norms expressed and modeled by family members and other trusted adults and feelings of connection to groups that encourage responsible behaviors. Teen Speak, one of the parent engagement programs implemented via CAHP offers skill-building workshops for parents and other supportive adults to help foster critical intergenerational connections and build protective factors in the home and community. Through short, multimedia workshops focused on improving adult-teen communication and in person facilitated sessions where parents and caregivers can practice new techniques to engage their teens, Teen Speak seeks to reduce harmful behaviors and build strong family relationships. Teen Speak also collects data from participants via pre surveys, polls during lessons and a post retrospective survey.
In addition to engaging teens and parents directly, in order for more teens to be positively impacted, youth serving professional capacity must be improved at the school and community-based level. We know there is a strong connection between bullying and mental health and the National Institute of Health and Human Development (NICHD) research studies show that anyone involved with bullying—those who bully others, those who are bullied, and those who bully and are bullied—are at increased risk for depression.4 NICHD-funded research studies also found that unlike traditional forms of bullying, youth who are bullied electronically—such as by computer or cell phone—are at higher risk for depression than the youth who bully them.5 Even more surprising, the same studies found that cyber victims were at higher risk for depression than were cyberbullies or bully-victims (i.e., those who both bully others and are bullied themselves), which was not found in any other form of bullying. Read more about these findings in the NICHD news release: Depression High Among Youth Victims of School Cyberbullying, NIH Researchers Report.
To address this comprehensively, CAHP staff and CAHP grantee staff have been trained in multiple approaches to working our most vulnerable youth. This has included comprehensive training in suicide prevention and safe messaging, mindfulness, youth mentoring, youth-adult partnering, cyber-bullying, effective use of social media, LGBTIAQ inclusivity training and an intensive Transgender 101 train the trainer, social and emotional learning (SEL) and trauma informed care (TIC). Training and TA occurs on a quarterly basis and is required for all PREP and SRAE program grantees but is open to all CAH Programs and Program Partners including schools and community-based organizations where CAH programs operate.
Through a comprehensive approach aimed at building skills, competencies and capacity of teens, parents/caregivers and youth serving professionals, the CAHP seeks to decrease bullying and increase resilient responses to bullying in our schools and communities.
Annual Report - NPM #11: Percent of children with and without special health care needs having a medical home
Providing comprehensive care to children in a medical home is the standard of pediatric practice that should be delivered within the context of a trusting and collaborative relationship between the child’s family and a competent health professional familiar with the child and family and the child’s health history. Research indicates that children with a stable and continuous source of health care are more likely to receive appropriate preventive care and immunizations, are less likely to be hospitalized for preventable conditions, and are more likely to be diagnosed early for chronic or disabling conditions.
The American Academy of Pediatrics (AAP) specifies seven qualities essential to medical home care: accessible, family-centered, continuous, comprehensive, coordinated, compassionate and culturally effective. Ideally, medical home care is delivered within the context of a trusting and collaborative relationship between the child’s family and a competent health professional familiar with the child and family and the child’s health history. Providing comprehensive care to children in a medical home is the standard of pediatric practice. The Maternal and Child Health Bureau uses the AAP definition of medical home. State staff continues to develop refined techniques within the electronic reporting system (i.e., CMRS) that will include all seven qualities essential to medical home care.
CYSHCN with a medical home has been a priority for the SCHEIS program and has been supported by several partnerships and collaboratives. Having a primary care physician service identified in a child’s Individual Service Plan (ISP) developed with an SCHS CM served as a medical home proxy beginning with 2014 reporting. As part of the Medical Home grant, FCCS and its partners developed a Shared Plan of Care (SPoC), a document meant to increase care coordination for CYSHCN. This additional component was added to the medical home proxy with 2017 reporting and will continue through 2020 and beyond for ESM 11.1. It is acknowledged that a medical home is more comprehensive than just having a primary care physician. In part, it is also imperative for a child to have consistent health insurance to increase access to said provider. Of the 24,714 children age 0 to 18 years served in FFY 2019, 8,779 (approximately 35.5%) had a primary care physician and/or SPoC documented, and of those children approximately 57.1% had insurance identified in their ISP. The percent of CYSHCN ages 0-18 years served by SCHS CMUs with a primary care physician and/or SPoC has been selected as ESM 11.1, which should increase NPM #11 (Children with and without special health care needs having a medical home).
During SFY17 and SFY18, the Chart Review Forms for the Child Evaluation Centers (CECs), Cleft Lip/Palate Craniofacial Centers (CLCP) and Pediatric Tertiary Centers (PTCs) were revised to include questions regarding the presence and/or establishment of a Medical Home. Questions include: “1) Primary Provider Listed? and 2) Education if Primary Provider Not Listed?”. The Specialized Pediatric Services Program (SPSP) implemented a program-wide chart review during SFY19 and SFY20 utilizing revised materials and measures developed during SFY18. A total of 325 charts were reviewed: 160 CEC, 105 CLCP and 60 PTC. Of the 325 total charts reviewed, 300 (92%) had included documentation of Primary Provider. The remaining 25 (8%) of total charts reviewed did not have documentation of a Primary Provider and did not include additional education regarding a Primary Provider. For agencies without documentation of a Primary Provider who did not include additional education regarding a Primary Provider, technical assistance was provided in a final written evaluation.
Table NPM 11 - Percent of children with and without special health care needs having a medical home
|
|
2007 |
2011-2012 |
2016-2017 |
|
Percent of children with special health care needs having a medical home |
51.8 |
42.2 |
35.2 |
|
Percent of children without special health care needs having a medical home |
57.8 |
55.4 |
51.7 |
Data Source: National Survey of Children's Health (NSCH)
All (100%) of CYSHCN referred into NJ Title V's SPSP providers and SCHS CMUs are screened for status of primary care provider and their families are provided with information on how to link with a primary care provider/medical home. The Title V SCHS CMUs and pediatric specialty providers will continue to provide a safety net for families of CYSHCN. The number of CYSHCN served across SPSP increased; 94,801 (SFY18) vs. 120,323 (SFY19).
Demand for comprehensive evaluations through the CECs remained high over the past fiscal year. Several agencies reported an increase in wait times from a maximum of 9 months (during SFY18) to a maximum of 13 months (during SFY19). As of February 2020, the average wait time for an initial comprehensive evaluation through the CECs is 6.5 months with wait times ranging from 2 months to 13 months. In previous fiscal years, efforts to reduce wait times were focused primarily on the implementation of pre-appointment patient intake, the utilization of a cancelled appointments to reschedule patients on a “stand-by” wait list, and the distribution of surveys to assess for contributing factors.
A survey was implemented during February and March of SFY19 to assess for wait times, contributing factors to wait times and measures used to reduce the wait times at each CEC. Questions were presented in either a multiple-choice or Likert Scale format. According to the Survey, 66% of the CECs had a wait time “for initial comprehensive evaluation” of 1-6 months (33% 1-3 months and 33% 4-6 months) and 33% had a wait time “greater than 6 months” with a maximum wait time of 9 months. 100% of CECs completing the survey cited “limited number of providers” as a key contributor to the increased wait time for an initial evaluation at their CEC and 83% of CECs completing the survey cited “increased referrals to the Center” as a key contributor “increased wait time. 83% of CECs completing the survey stated that they either “strongly agreed” or “agreed” that their CEC has taken measures to address the wait time for an initial CEC appointment. These measures included the use of “stand by wait lists” (100%), implementation of “consultation visits prior to initial evaluation” (67%), “front loading intake”/completion of intake prior to the initial evaluation (33%) and utilization of “centralized scheduling” (33%).
There were several attempts to schedule a face-to-face meeting with State Staff and the CEC providers to discuss the findings from the SFY19 survey and explore additional measures to reduce wait times for initial evaluation. However, due to variations in schedules among multiple providers from each CEC and limited availability during “non-clinical” hours, further discussion was completed via telephone/conference call and email correspondence between State Staff and CEC providers through the end of SFY19 and beginning of SFY20. Upon further discussion during SFY20, an increase in wait times was noted across several CECs. A total of 2 CECs (25% of CECs) noted a wait list of 1-3 months (a decrease from 33% assessed during SFY19), a total of 3 CECs (38% of CECs) noted a wait list of 4-6 months (an increase from 33% assessed during SFY19) and a total of 3 CECs (38%) noted a wait list greater than 6 months (an increase from 33% during SFY19). While the number of CECs with a wait greater than 6 months only appeared to increase by 5%, it should be that noted that upon further assessment, the maximum wait time increased from 9 months to 13 months (with 1 CEC reporting a wait list of 11 months, 1 CEC reporting a wait list of 8 months and 1 CEC reporting a wait list of 13 months).
In order to gain a deeper understanding of the increase in wait times across the CECs from SFY19 to SFY20 and the individual contributing factors on an agency basis, a second survey was developed and implemented during February 2020. This survey relied on open-ended and/or narrative responses from each CEC rather than a multiple-choice/Likert Scale. The questions also expanded on the SFY19 survey and prompted additional information regarding: 1) variations in wait time for initial appointments by specialty 2) agency-specific guidelines for age, diagnosis/diagnoses and providers 3) referral to EIS when applicable 4) staffing changes within the last 12 months and 5) contributing factors. Although the SFY19 survey provided information regarding perceived contributing factors to CEC wait lists, the responses were limited to set categories and did not enable a deeper consideration of factors that may be unique to the CECs. Additionally, the SFY19 survey did not explore whether priority was given patients based on age or diagnosis. Following discussions with the CECs at the conclusion of SFY19 and beginning of SFY20, several CECs stated that their agencies utilized a policy for “fast-tracking” patients under the age the 3 or those with a suspected case of Autism. This enabled for patients deemed to be at “higher risk” to be seen before the maximum wait time.
Of the 8 CECs surveyed during SFY20, 3 CECs noted a difference in waiting time by provider stating that initial appointments for additional therapy services such as speech therapy, occupational therapy and physical therapy had a shorter wait list when compared to the wait list for initial neurodevelopmental evaluations. Staffing changes were reported by 5 of the 8 CECs surveyed and challenges with recruitment were identified as a key contributing factor by 5 of the 8 CECs. In addition to staff recruitment, “challenges with pre-authorization”, “high demand for evening appointments”, “families seeking evaluations from more than one provider simultaneously” and “the increased number of referrals” were reported as key contributing factors to increased wait times at the CEC.
Of the 8 CECs surveyed during SFY20, 5 CECs noted specific guidelines for scheduling initial appointments based on age and/or diagnosis. 2 of the 5 CECs stated that their agency had a policy for “fast-tracking” children 5 years of age and under while another 2 of the 5 CECs stated that their agency had a policy “prioritizing” children less than 3 years of age. “Priority” or “fast-tracking” frequently resulted in a decreased wait time of 3-6 months for children less than 5 years of age (for agencies with a wait list of 6 to 11 months) and a decreased wait time of 3-4 months for children less than 3 years of age (for agencies with a wait list of 6 to 8 months). 4 of the 5 CECs noted specific guidelines for scheduling initial appointments based on whether there was a suspected diagnosis of Autism, speech/language delays or motor delays. Patients with suspected Autism were “fast-tracked” and received an initial appointment in 3-6 months (for agencies with a wait list of 6 to 11 months) and patients with suspected speech/language delay or motor delays received an initial appointment in 2-3 months (for agencies with a wait list of 6-8 months).
Based on the findings of the SFY20 survey, it became apparent that each CEC faces a different set of challenges that contribute to prolonged wait times. It also became clear that one single approach would not effectively reduce wait times for all CECs in the SPSP network. Moving forward for SFY21, the SPSP will focus on individual policies at the agency level regarding wait times. Per the revised “Attachment C Program Specifications for Child Evaluation Centers” for SFY21, each CEC will be required to develop and implement (in collaboration with State Staff) a “Wait List Policy” that will include: 1) scheduling considerations based on age, diagnosis/diagnoses and/or requested providers, 2) guidelines regarding referral to Early Intervention Services (if applicable), 3) Methods to capture “wait times” for initial evaluations on a quarterly basis and 4) a template for quarterly reporting of “wait times” to State Staff. Not every CEC reported scheduling guidelines or considerations based on age, diagnosis/diagnoses and requested providers. Guidelines from organizations such as the CDC and NJAAP for specific age groups and/or diagnoses (examples including children birth through 3 years of age, children less than 5 years of age, children greater than 5 years of age, children with suspected ASD, children with suspected speech delays/motor delays etc.) would enable CECs to identify and prioritize patients who may require more immediate treatment and evaluation. Although this may not directly reduce that wait time at each CEC, it would allow for expedited initial evaluations for patients deemed to be most “at risk” regardless of wait times at each Center.[1][2] Referral to Early Intervention Services (when indicated) for children under 3 years of age would also facilitate access to needed services for eligible children with speech delays or motor delays. A mechanism capturing and reporting wait times on a regular basis will enable the CECs and State Staff to monitor progress towards a reduced wait time for initial appointments and identify new challenges as they arise.
Title V is committed to collaboration with the DHS Office of Medicaid Managed Care, the COCC, SPAN, and the NJAAP, and other community-based partners to engage in medical home initiatives to reinforce linkage of CYSHCN with comprehensive community providers. ISG projects are ongoing and have built upon one another. In July 2009 Title V, in partnership with the NJAAP and SPAN, implemented HRSA’s Integrated Systems Grant (ISG) to improve access to quality, culturally competent, family-centered systems of service for children, especially children with special health care needs. This project enabled NJAAP to work with over 30 practices in 13 counties across the State in the development of practice teams and use of the model for improvement to strengthen patient-centered medical homes. The ISG program success was measured using evaluation of the Medical Home Index (a nationally validated self-assessment tool for measuring “Medical Homeness” that each practice must complete pre- and post-program participation). Results for participating practices showed an overall increase from pre- to post, representing an increase in their overall “Medical Homeness.” Receiving recognition for their degree or “Level” of Medical Homeness, is for many practices, the next step after participating in NJ AAP’s Medical Home Initiative.
With knowledge gained through the Model for Quality Improvement and with the policies, processes and procedural changes that many of the practices implemented throughout their participation in the Initiative, many of the practices were ready to apply for formal recognition, with a goal of payment incentives that will support and sustain financing their Medical Homes. National Center for Quality Assurance (NCQA) recognition as a Patient Centered Medical Home involves a detailed and time-consuming process with many standards and elements, including “Must Pass” elements.
Ongoing improvements to the Case Management Referral System (CMRS) allowed new and different opportunities to track NPM 11 and 12.
Annual Report - NPM #12 (transition to adulthood)
The transition of youth to adulthood has become a priority issue nationwide as evidenced by the clinical report and algorithm developed jointly by the AAP, and the American College of Physicians to improve healthcare transitions for all youth and families. Over 90% of children with special health care needs now live to adulthood but are less likely than their non-disabled peers to complete high school, attend college or to be employed. Health and health care are cited as two of the major barriers to making successful transitions. Adolescence is a period of major physical, psychological, and social development. As adolescents move from childhood to adulthood, they assume individual responsibility for health habits, and those who have chronic health problems take on a greater role in managing those conditions. Receiving health care services, including annual adolescent preventive well visits, helps adolescents adopt or maintain healthy habits and behaviors, avoid health‐damaging behaviors, manage chronic conditions, and prevent disease.
Table NPM #12: The percentage of adolescents (12-17) with (and without) special health care needs who received the services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence.
|
|
2014 |
2015 |
2016* |
2017+ |
2018 |
2019 |
|
Annual NPM #12 Indicator |
12.2 |
25.3 |
41.3 |
43.0 |
45.7% |
48.1% |
|
Numerator |
352 |
1,101 |
2,073 |
2,208 |
2,027 |
2,663 |
|
Denominator |
2,892 |
4,385 |
5,017 |
5,137 |
4,438 |
5,534 |
|
Is the Data Provisional or Final? |
Final |
Final |
Final |
Final |
Final |
Provisional |
Notes - For 2014, 2015, 2016, and 2017 - -seven possible types of transition to adulthood services were identified as proxies:
1. identification of an adult-level primary care physician (i.e., pediatrician excluded in the current definition),
2. transition-specific services including Division of Developmental Disabilities (DDD),
3. employment,
4. health insurance,
5. Supplemental Security Income (SSI),
6. SPoC,
7. Any service tied to ‘transition to adulthood’ documented as an Exceptional Event in the youth’s record.
SCHS CMUs serve children with special health care needs up to their 22nd birthday. When the age criterion is relaxed to include youth age 12 to 21 years, 5,534 youth were served in FFY 2019. Of those youth, 2,603 (approximately 48.1%) received at least one service to aid in transition to adulthood.
Identification and monitoring of transition to adulthood needs for CYSHCN and their families served through the SCHS CMUs statewide is ongoing. Transition packets continue to be updated and shared with families and linkage with community-based supports is provided. State staff monitor the SCHS CMUs efforts to reach and outreach to CYSHCN regarding transition, including documentation of goals related to transition on adolescents' ISPs.
The SCHS CMUs continue to facilitate transition to adulthood with youth by ensuring a transition to adulthood goal on the ISP. Likewise, exploring youth and their parents' needs to facilitate transition with insurance, education, employment, and housing, and linking them to community-based partners will continue. The quality improvement project that started in 2014 includes transition to adulthood CMRS documentation and NPM #12 proxies described above.
The ongoing QI presentations to the SCHS CMUs stimulated an active discussion about how SCHS CM documentation produces system wide data that is used for QI and MCH Title V Block Grant reporting. These presentations also inform FCCS and SCHS CMU staffs on areas for training to more effectively unlearn and relearn documentation methods, to move from a lengthy narrative charting style to the use of drop-down menus supported by brief entries that use shorter more consistent terminology. The State Health Data Specialist staff collaborate with the Quality Assurance Specialist Nurse and Program Officers to review and analyze CMRS data, and to provide additional QI presentations highlighting progress and additional areas of improvement in documentation on the Core Outcomes at SCHS CMU quarterly meetings.
During SFY17 and SFY18, the Chart Review Forms for the Child Evaluation Centers (CECs), Cleft Lip/Palate Craniofacial Centers (CLCP) and Pediatric Tertiary Centers (PTCs) were revised to include a measure of Transition to Adulthood with the addition of the following question: “1) Documented Transition to Adulthood (in Individual Service Plan/ISP)?” . The Specialized Pediatric Services Program (SPSP) implemented a program-wide chart review during SFY19 and SFY20 utilizing revised materials and measures developed during SFY18. A total of 325 charts were reviewed: 160 CEC, 105 CLCP and 60 PTC. Charts for patients 14 years of age and older were assessed for documented Transition to Adulthood. According to the Maternal Child Health Bureau, Transition to Adulthood is a Core Outcome for Children and Youth with Special Health Care Needs (CYSHCN) should begin when the child reaches about 12-17 years of age or on average of 14 years.[3] Of the 325 charts reviewed, a total of 67 (21%) were for patients greater than or equal to 14 years of age. 28 of the 67 (48%) charts reviewed for children 14 years of age and older included documentation of Transition to Adulthood Planning. For agencies without documentation of Transition to Adulthood for patients 14 years of age and older, technical assistance was provided in a final written evaluation.
SCHS CMUs and pediatric specialty providers will refer youth and/or their parents to NJ Council for Developmental Disabilities (NJ CDD) for participation in Partners in Policymaking (PIP) self-advocacy training as well as continue to assist youth and their families to advocate for transitional supports through their individualized education plans and community-based supports. Title V will continue to participate in PIP mock trials to facilitate the development of clients’ self-advocacy skills.
Under health care reform, NJ Medicaid eligibility for single adults has expanded in 2014 to up to 133% FPL. As this population is intended to include a significant percentage of childless adults with incomes below 133% of FPL, it is anticipated that CYSHCN transitioning to adulthood will have expanded opportunity to access health coverage through Medicaid, the insurance exchange, and coverage through their parents’ insurance through age 26 (or in certain circumstance till age 31). In addition, it is also possible that some youth/young adults with special needs on Medicaid may experience a shift in eligibility to an insurance exchange. 20.8% of the 12-21-year-old youth who were served by SCHS CMUs in FFY2017 had an insurance service documented. Of those with insurance documented, 52.4% had Medicaid/NJ Family Care specifically.
The percent of CYSHCN ages 12-17 years served by SCHS CMUs with at least one transition to adulthood service has been selected as ESM 12.1, which should increase NPM #12 (Transition to Adulthood).
The adolescent subset of CYSHCN served through Title V is observed to be significant. In SFY 2017, approximately 15% of CYSHCN served across the SCHS CMUs were aged 14-19 years of age. During SFY19, the percentage of youth age 14-19 years served by the SPSP agencies was greater, comprising nearly 29% of those served by the Tertiary Centers, and 16% by the CEC/FAS Centers. The Cleft Lip/Palate Craniofacial Centers reported 9% CYSHCN served among that same age group. Transition planning and implementation will remain a priority for these youth, their families, NJ Title V, and providers.
Documentation of transition planning was largely noted by SCHS CMUs to occur on or about age 14. A discussion with parents/youth about transition planning, and the distribution of transition packets were noted. An anecdotal observation by the SCHS CMs noted that families reported that they preferred to receive materials incrementally rather than one very large packet filled with resources. That incremental method provided them with the opportunity to focus on one or a few transition needs at a time, such as primary care provider; access to Supplemental Security Income and/or health insurance including Medicaid, Medicaid expansion and/or private insurance or the Marketplace; education/job training supports; statewide systems of care including the Department of Human Services’ Division of Developmental Disabilities and/or the Department of Children and Family’s Children’s System of Care Initiative, and others.
The Specialized Pediatric Services Program (SPSP) providers conducted evaluations and developed service plans with adolescent CYSHCN and their families. In addition, SPSP providers reported providing youth with transition to adulthood resources regarding genetics, family medicine, adult providers, support groups and other medical and social related needs. The linkage of CYSHCN to multidisciplinary team members including social work and other community-based systems such as SCHS CM, SPAN, and disability-specific organizations including the Arc, Tourette’s Association, and Parents’ Caucus was also a strategy implemented by the SPSP agencies.
Through an agreement with SPAN, the Family WRAP (Wisdom, Resources and Parent to Parent) project provides information, resources and one-to-one family support that are directly helpful to clients. Likewise, the close working relationship with the SCHS CMUs and the SPAN Resource Parents and Parent to Parent family support direct service support to SCHS CMUs which allows for cross-training on community-based resources for transition.
Linkages developed through previous ISG grants have facilitated the distribution of materials developed by SPAN, NJ AAP, NJDOH, and other community partners engaged in the COCC to medical practices. Community-based partners continued to identify resources and linkages to support transition to adulthood for CYSHCN. Likewise, training was provided to Title V providers on work incentives for persons who receive SSI or SSDI benefits, and NJ DHS’ Managed Long-Term Services and Supports program.
A major system change in the redistribution of services for children and adolescents under age 16 with developmental disabilities was implemented. Access to care for those children and adolescents has been reassigned to the DCF, and they are also charged with collaboration with the Department of Education (DOE) and DHS's Division of Developmental Disabilities (DDD) to facilitate transition to adulthood services. At age 18 or high school graduation, youth/young adults' services are the responsibility of the DHS's DDD. Training on these systems change, as well as continued training on DHS’ DDD and DCF’s Children’s System of Care Initiative affecting adolescents with developmental disabilities, is occurring with regularity among the SCHS CMUs. Collaboration with intergovernmental and community partners including DDD, DCF, NJ Council on Developmental Disabilities, Boggs Center, SPAN, the Arc, Traumatic Brain Injury Association and families is critical to appropriate access to services and supports. Identification and monitoring of transition to adulthood needs for CYSHCN and their families served through SCHS CMUs statewide is in process as well. County-specific transition packets including resources related to education, post-secondary education, vocational rehabilitation, housing, guardianship, SSI, insurance, and Medicaid/NJ Family Care are shared with families and linkage with community-based supports is provided. State staffs monitor the SCHS CMU’s efforts to in-reach and outreach to CYSHCN regarding transition, and documentation of goals related to transition on adolescents’ individual service plans.
Aligned with the Title V CYSHCN programs and funded by Part D of the Ryan White Care Act, the NJ Statewide Family Centered HIV Care Network remains a leading force in providing care to women, infants, children, youth (WICY) and families infected and affected by HIV disease in the State. Consequently, there is ongoing collaboration across systems within the Division of Family Health Services’ Maternal Child Health and CYSHCN’s programs, and the Ryan White Part D program to support WICY needs in the community. NJ ranks third in the nation for pediatric cases. Of youth 13-24 years, 912 were living with HIV/AIDS in 2016. Through diligent efforts to treat and educate HIV-infected pregnant women, the perinatal transmission rate in NJ remains very low. Intensive case management, coupled with appropriate antiretroviral therapy, enables children with HIV to survive into and successfully transition into adulthood.
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