Adolescent Health Annual Report

 

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 Annual Report and as the Application 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.  From 10/1/20 – 9/30/21 TOP® will engage at least 1,000 NJ youth and complete 20,000 hours of community service learning. 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.  Since 9/30/20 CAHP grantees have offered 5 cohorts of Teen Speak engaging over 50 parents and caregivers with plans to offer another 6-10 cohorts through the Spring and Summer.  CAHP plans to expand Teen Speak in 2021 to 3 additional grantees with the goal of reaching 500 parents and caregivers in 2022.

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.  In January of 2021, all CAHP grantee staff were offered training on Teaching Students to Use Tech Safely and Wisely, which will be incorporated into their program sessions with youth.

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 a 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 continued in 2018 and has continued 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 20,342children age 0 to 18 years served in FFY 2020, 6,775 (approximately 33.3%) 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). Table NPM 11 - Percent of children with and without special health care needs having a medical home

	2007	2011-2012	2016-2017	2017-2018	2018-2019
Percent of children with special health care needs having a medical home	51.8	42.2	35.2	35.6	40.6
Percent of children without special health care needs having a medical home	57.8	55.4	51.7	52.5	49.0

Data Source: National Survey of Children's Health (NSCH)

https://www.childhealthdata.org/browse/survey

 

For many CYSHCN, a specialty provider often comes to be a child’s usual source of care where coordination of care becomes vital to ensure primary care services are not overlooked.  Past chart reviews have shown greater than 90% of CYSHCN, receiving services through SPSP grant-funded programs, have a primary care physician listed. In SFY20 the program included evaluating every child seen in a SPSP grant-funded program for the designation of a primary care provider as part of the grantee goals and objectives. The Title V SCHS CMUs and pediatric specialty providers will continue to provide a safety net for families of CYSHCN.

 

In March 2020, staff reached out to the 16 SPSP health service grantees to understand the impact of COVID-19 at each center. While all (100%) of the centers were able to successfully accommodate in-office visits, in compliance with the CDC recommendations, many offered alternate options. Some physicians were able to schedule patients at their private offices, while the centers (hospital/ambulatory based offices) were able to provide alternative methods of evaluation, care and treatment, such as: telehealth platforms, letters, phone calls, etc. An overwhelming 85% of the grantees expressed that the response to telehealth/telemedicine visits from patients and families with CYSHCN were positive.

 

Despite the COVID-19 pandemic, the number of CYSHCN captured through quarterly statistics collected from the 16 SPSP health service grantees show continued growth in the utilization of specialized pediatric services.  In SFY20, services were provided to approximately 132,864 children, up from 120,323 children served in SFY19. The increase in the number of patients seen in SFY20 may largely be because many agencies adjusted to telehealth/telemedicine platforms. Centers were able to coordinate continuous and comprehensive services for patients in a more individualistic approach. CYSHCN were to able access their team of providers independently, accounting for more appointments.

Recognizing that there have been many changes in staff throughout the grant programs and internally at the NJ DOH, the program is working on updating the data collection process. The program is in the process of revising the data collection sheets to be more standardized across grant programs and on establishing a database to house all the data and run reports.  This will enable the SPSP to establish a new baseline and better capture changes.

 

The SPSP continues to monitor the wait times at each grant funded site for both initial and follow-up appointments. With the start of the pandemic, grantees were asked to report out on the status of their operations such as, utilization of telehealth and in-person appointments. The grantees were very forthcoming with sharing their experiences in real time in addition to their quarterly reports. A survey was also sent out to all SPSP health service grantees to assess for wait times and to examine factors that may have affected wait times at each agency. Questions asked in the survey were as follows: current wait time for an initial and follow-up appointment, if COVID-19 had affected wait times, any staffing changes that may have occurred within the last 12 months, and if a wait time policy was established. Responses varied with each agency.

 

Of the responses from the CECs, the average current wait time for an initial appointment ranged from 2 weeks to 12 months. Such appointments varied based on specialty (psychiatry, developmental pediatrics, neurology); however, the majority of the wait times were 2-3 months. Wait times for follow-up appointments varied between no wait to 2-3 months. Many of the CECs cited that they are able to schedule follow-up appointments right away for their patients. COVID-19 has affected each center both positively and negatively. Some centers stated that due to the pandemic, they were able to see more patients through telehealth/telemedicine platforms while others have shared that many families wanted to wait for an in-person visit and therefore the wait list grew longer. During the pandemic, a handful of grantees experienced staffing changings as a result of retirement and leave, thus affecting the wait times at each respective center.

 

In the same wait list survey, the responses provided by the CLCPC Centers showed that wait times for an initial appointment were significantly shorter for these services compared to CECs.  Many of the CLCPC Centers indicated that they could see patients immediately while some expressed that wait times vary depending on the reason for the visit with the longest wait to be 4-6 weeks. PTC centers include many different specialty and subspecialty programs. The wait time varies by specialty; as well as by, diagnosis, age, and medical condition. The average wait time for initial appointments for the majority of pediatric specialties is 1 - 2 weeks with the longest wait time being for genetics appointments, which averages three months.

As explained in the MCH Block Narrative from last year, each SPSP grantee faces a different set of challenges that contribute to prolonged wait times. It is also clear that one single approach will not effectively reduce wait times for all centers in the SPSP network. Moving forward, as each agency adjusts to providing services post COVID-19, the DOH will collaborate with grantees to monitor progress towards reducing wait times for initial appointments and on identifying 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.

 

	2015		2016	2017	2018	2019	2020
Annual NPM #12 Indicator	25.3		41.3	43.0	45.7%	48.1%	45.7%
Numerator	1,101		2,073	2,208	2,027	2,663	1,390
Denominator	4,385		5,017	5,137	4,438	5,534	3,039
Is the Data Provisional or Final?	Final		Final	Final	Final	Final	Provisional

 

*Notes - SCHS CMUs serve children with special health care needs up to their 22nd birthday. Children age 12 – 21 are offered &/or provided with transition services.

 

Seven possible types of transition to adulthood services were identified as proxies; the identification of an adult level primary care physician; transition specific services; employment; health insurance; Supplemental Security Income (SSI); SPoC; Exceptional Events documented in the youth’s record tied to transition.

 

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 outreach to CYSHCN regarding transition, including documentation of goals related to transition on the ISP.

 

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.

 

Ongoing Case Management Referral System (CMRS) presentations to the SCHS CMUs stimulate active discussions 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 and more consistent terminology. The state data/analytical staff collaborate with the Program Officers to review and analyze CMRS data. Monthly meetings are held jointly with FCCS state staff and all 21 CMUs to provide additional QI presentations highlighting progress and additional areas of improvement in documentation on the Core Outcomes.  

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 expanded in 2014 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).

 

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.

 

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, active in SCHS CM and SCHS CMs.

Due to the rising percentage of children in NJ diagnosed with ASD, FCCS is excited to partner with  Autism New Jersey to provide support to SCHS CMs for children active in SCHS CM who have been diagnosed with ASD as well as other learning disabilities.  This agreement will enable SCHS CMs to provide the necessary support to children and their families active in SCHS CM.

 

Linkages developed through current and previous ISG grants have facilitated the distribution of materials developed by SPAN, NJ AAP, Autism NJ, NJDOH, and other community partners engaged in the COCC to medical practices. Community-based partners continue to identify resources and linkages to support transition to adulthood for CYSHCN.

 

In 2013, services for children and youth with developmental disabilities under age 21 were transitioned from DHS's Division of Developmental Disabilities (DDD) to the DCF’s Children’s System of Care (CSOC). CSOC is charged with working collaboratively with the Department of Education (DOE) Offices of Special Education, the DDD and the Division of Vocational Rehabilitation (DVRS) to help facilitate transition to adulthood services. After age 21, developmental disability services are provided by the DDD. Training on these systems for adolescents with developmental disabilities is occurring with regularity among the SCHS CMUs. Collaboration with intergovernmental and community partners including Autism NJ, 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 staff monitor the SCHS CMU’s efforts to outreach to CYSHCN regarding transition, and documentation of goals related to transition on adolescents’ individual service plans.

 

Transition planning and implementation will remain a priority throughout SFY22. The adolescent subset of CYSHCN served through Title V remained relatively the same between SFY2019 and SFY2020 and is as follow. In SFY2020, 17% of patients at CECs and 16% of patients at FASD Centers were of youth 14-19 years of age while 9% of CYSHCN of the same age group were served at Cleft Lip Cleft Palate Craniofacial (CLCPC) Centers. In addition, youth between the ages of 14 and 19 comprised 30% of those served at Pediatric Tertiary Care (PTC) Centers. The Specialized Pediatric Services Program (SPSP) providers engage with adolescents and their families to facilitate transition to adult services. Transition services primarily include discussions about the importance of adult care, options for adult care (providers/locations), sharing 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 are strategies implemented by the SPSP agencies. As shown in past reviews and surveys, plans of care and documentation on transition to adult care vary amongst the three SPSP categories: CEC, CLCPC, and PTC Centers. The SPSP plans to collaborate with each grantee to ensure that a definition of transition to adult care is established at each site and that practice policies regarding transition to adult health care are created and implemented.

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, 432 were living with HIV/AIDS, & of youth 0-12 year, 26 were living with HIV/AIDS in 2020. 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.