I. Overview of Approach to Children with Special Health Care Needs Domain

 

Services for children with special health care needs (CSHCN) are an important component of the Title V work carried out by the Bureau of Family Health (BFH). The BFH will continue to provide services for CSHCN that are family-centered, community based and coordinated, as well as evidence-based or -informed. As stated in the CSHCN report section, according to the 2018 National Survey of Children’s Health, the percent of Pennsylvania’s CSHCN has risen to 20.3, exceeding the national average of 18.8 and, with only 18.2 percent of those families reporting receiving care in a well-functioning system, much work remains to advance this new BFH priority. Strategies related to this priority will address the six core outcome areas for systems of care for CSCHN: 1) Family Professional Partnership, 2) Medical Home, 3) Adequate Health Insurance, 4) Early and Continuous Screening and Surveillance, 5) Easy to Use Services and Supports, and 6) Transition to Adult Health Care. BFH has begun to map state assets associated with each of the six core outcome areas and will use this information to identify system strengths and opportunities for improvement. This information, coupled with research about successful public health services and systems interventions implemented by other states and input from stakeholders, including families and communities, will inform the development of new strategies. Over the course of the funding cycle, additional strategies may be also identified which complement existing work and address the new priority on promoting mental, behavioral and developmental health outcomes.

 

II. Other Federal Funding and State-Funded Activities/Future Efforts

 

The ongoing goal of the Specialty Care Program (SCP) is to facilitate improved health outcomes by identifying and removing barriers to care. The SCP includes grant funded programming for individuals with Cooley’s Anemia, cystic fibrosis, hemophilia, sickle cell disease (which includes health system-based as well as community services-based grants), spina bifida, and children with neuromuscular and orthopedic conditions (referred to as Child Rehabilitation). Title V funds the sickle cell community services-based grants and Child Rehabilitation, and the rest are state match funded. Barriers to services are consistent across SCP conditions and, the SCP is shifting the focus of services to increase system-level change and support. This shift moves from predominantly enabling clinical services and toward improvements in system coordination.

 

The SCP will continue to require grantees to allocate funds to a Client Assistance Fund (CAF), formerly called the Patient Assistance Fund, to address barriers to care that diminish patients’ adherence to treatment and impact their quality of life. The intent is for grantees to provide families with immediate assistance through the CAF, while long-term assistance is provided via care coordination, individualized treatment planning, and solutions through the treatment plan to eliminate barriers. The SCP will continue to pair the revised model with ongoing data collection and evaluation components.

 

Through a new grant agreement using Title V funds, the BFH will partner with the Pennsylvania Association of Community Health Centers (PACHC) to provide support to federally qualified health centers, federally qualified health center look-a-likes, Rural Health Clinics, and other like-mission community health centers (collectively known as FQHC) in the PACHC network. PACHC represents and supports the largest network of primary health care providers in the Commonwealth. This three-year grant will focus on CSHCN served by these FQHCs. The goals are to improve the programmatic, clinical, and operational performance within FQHCs and to increase CSHCN access to well-functioning, continuous systems of care. The grant includes these components: CSHCN and family engagement; early and continuous mental, behavioral, and developmental screenings and referrals; access to care; successful transitions through all life stages; and coordinated, comprehensive, continuous care. This program will fund initiatives to overcome barriers to care for CSHCN within the FQHCs and their partner providers.

 

In 2021, the Technology Assisted Children’s Home Program (TACHP) will reach the end of its cycle, with the existing grants ending on 6/30/2021. During this period, the program’s grantees (Children’s Hospital of Pittsburgh and the Health Promotion Council of Southeastern PA) will continue to provide coordination of care and work toward finding other resources for their enrollees. As it is the last year of the grant, the grantees will also be working on transitioning enrollees to other resources. In addition, the BFH will be developing a Request for Application (RFA) to seek competitive bids from grantees for the next iteration of the program. This RFA will also ensure that the new program is aligned with the Title V priorities.

 

State match funds will again be utilized in 2020 to support outreach and education-based grants for individuals diagnosed with epilepsy, Charcot-Marie-Tooth (CMT) Disease, and Tourette’s Syndrome. The BFH will continue to collaborate with Pennsylvania (PA) foundations and associations dedicated to these conditions. The Epilepsy Foundation of Eastern PA and the Epilepsy Association of Western and Central PA will maintain their focus on outreach and education to first responders, school employees, secondary students, family members/caregivers, and the community. The Charcot Marie Tooth Association (CMTA) will provide education to the public and provide an educational summer camp experience for youth with CMT Disease. CMT is a degenerative nerve disease. CMT symptoms include muscle weakness, decreased muscle size, decreased sensation, hammertoes, and high arches. CMT will continue to provide community education activities, advocacy and summer camps for Americans with CMT and their family members/caregivers.

 

The Pennsylvania Tourette Syndrome Alliance (PA-TSA), Inc. provides support and education to individuals affected by Tourette Syndrome (TS), their families and healthcare and other professionals. The PA Tourette’s Program is a state funded program and is used as part of the state match for Title V. TS remains widely misunderstood by the public and misdiagnosed by health care professionals. The BFH and PA-TSA, Inc. continue to reach out to community organizations to identify and serve underserved populations. PA-TSA will focus on community outreach and engage in activities to reach more people within PA. PA-TSA plans to update their website, incorporate their new logo on their materials, and focus on expanding their social media outreach (Facebook, Twitter, Instagram, YouTube and more).

 

In 2021, the BFH will be entering the final year of the Administration for Community Living (ACL), Traumatic Brain Injury (TBI) State Partnership Program Mentor State Funding Grant, which is in effect from June 1, 2018 through May 31, 2021. Through this grant BFH developed and will maintain a NeuroResource Facilitation Program in PA along with providing TBI education for professionals, caregivers and family members. NeuroResource Facilitation is provided through the grantee Counseling and Rehabilitation, Inc. The education component is provided by the grantee Brain Injury Association of Pennsylvania (BIAPA). As a mentor state, the BFH mentors states who received the partnership grant by enhancing and building upon the TBI infrastructure within their state. In addition, BFH will continue to collaborate with ACL and other designated mentor state grantees to increase the impact of the TBI Program nationally. The overall goal of this project is to maximize the health, independence and overall well-being of individuals with TBI. The BFH will apply for the next grant cycle offered by ACL.

 

The BFH’s Head Injury Program (HIP), funded through state funds not part of the state match, provides rehabilitative and therapeutic services to individuals with a TBI. To be eligible for the HIP, an individual must be a U.S. citizen, 18 years of age or older, have resided in PA at the time of injury and application, and sustained a TBI after July 2, 1985. Recognizing the need for rehabilitative and therapeutic services for individuals between age 18 and 21 with traumatic brain injury, the BFH lowered the age requirement from 21 to 18.

 

The BFH will continue providing services through the Acquired Brain Injury Program (ABIP) that was implemented in July 2020 with Title V funding. The program will provide short term rehabilitation for individuals age 18 to 21 who sustained an acquired brain injury. Specialized brain injury providers will provide rehabilitation in an outpatient or home and community-based setting. Through this program the BFH’s goal is to meet the needs of an age group with limited rehabilitation resources.

 

The BFH’s evaluation of the PA Medical Home Initiative (MHI) will lead to program reassessment in 2021. The reassessment will ensure that any future medical home program works in tandem with the Department of Human Services (DHS), which administers Medicaid in PA. On January 1, 2017 DHS launched its Patient-Centered Medical Home (PCMH) program. The PCMH program increases access to medical home primary care for certain high-utilization Medicaid patients by paying their PCPs a per member/per month reimbursement if they become PCMH. The findings of the BFH’s program evaluation will be used to inform any future medical home program to ensure it is effectively implementing medical home primary care and disseminating medical home principles to all PCPs in the state.

 

The Parent Education, Advocacy and Leadership Center (PEAL) assists families and CSHCN by offering services in six key areas: outreach, individual assistance, resources, trainings, leadership development and partnerships. PEAL is PA’s Family-to-Family Health Information Center (F2F) as designated by the Health Resources and Services Administration (HRSA), Maternal Child Health Bureau (MCHB). F2Fs are family-staffed organizations that provide support, information, resources, and training around health issues to help families of CSHCN and the professionals who serve them. The BFH provides Title V funds to PEAL to conduct outreach and training to families and CSHCN. PEAL conducts Parent/Family Leadership Institutes throughout the state. These Institutes allow parents and families of CSHCN the opportunity to learn how to access education, health care and community supports. PEAL conducts youth leadership institutes (YLIs) and maintains a network of youth with disabilities and special health care needs across the state. Youth are instructed on self-sufficiency and how to reach their potential as self-advocates. YLIs will continue to increase as they expand throughout the state and youth participation increases. PEAL also conducted focus groups with grandparents serving as caregivers of CSHCN, which will inform the development of trainings relevant to grandparents of CSHCN and provide support and resources. PEAL is reaching out to fathers of CSHCN by planning and partnering with other agencies to conduct a one-day family engagement conference. This conference will give fathers the opportunity to attend trainings, learn about resources and network with other fathers of CSHCN.

 

The Philadelphia Department of Public Health will continue to offer mini-grant opportunities for services to CSHCN to non-profit community-based organizations through a competitive RFA process, funded by Title V. The services offered must work to develop collaborations between systems of care serving children and youth with special health care needs. The target population for the project must be located in Philadelphia, with a focus on children with special health care needs between the ages of birth and 21 years old. Projects should respond to needs expressed by Philadelphia families and promote equal rights and equal opportunity. The RFA is released annually and all applicants are required to meet the requirements outlined in the RFA. The proposals are evaluated by a panel of independent reviewers and those that are awarded will be reimbursed for the services provided.

 

III. Priorities

 

Priority: Improve mental health, behavioral health and developmental outcomes for children and youth with and without special health care needs

 

Strategy: Prevention recommendations from Child Death Review (CDR) teams, including recommendations related to addressing trauma, will be regularly reviewed and implemented

 

By collaborating with Child Death Review (CDR) teams to review data related to trauma and fatality for CSHCN, and by implementing recommendations, the BFH aims to facilitate changes that will promote the safety and wellbeing of children, including CSHCN. Implementing safety and well-being measures will contribute to prevention of adverse health outcomes and mortality, an integral component of a well-functioning public health system for CSHCN and their families. By adopting recommendations that prevent or mitigate the effects of trauma, the BFH aims to improve CSHCN health outcomes over time.

 

Objective: Annually increase the number of recommendations from CDR teams related to preventing CSHCN death that are reviewed for feasibility and implemented each year

 

ESM: Number of recommendations from CDR teams that are implemented (CSHCN)

 

The mission of the PA CDR program is to promote the safety and wellbeing of children and reduce preventable child fatalities. PA’s CDR Program continues to explore and pursue opportunities for supporting local teams in their work. The BFH recognizes the importance of evidence-based prevention strategies and the value of effective death reviews to inform those strategies. Through this program, deaths among PA’s children can be better understood, and interventions designed to prevent future deaths can be identified.

In 2019, over half of the cases reviewed by local CDR teams involved a child who was diagnosed with some type of medical condition that may or may not have played a part in their death. Through obtaining information from annual recommendation reports and quality data from local CDR teams, the BFH will examine findings of trauma related to deaths of CSHCN and recommendations made for individual cases as well as systemic barriers identified at the local level. The BFH can further review information for feasibility and make additional recommendations about how to utilize those findings to inform prevention strategies and programming within the Department and to support program implementation at the state or regional level.

 

Priority: Improve the percent of children and youth with special health care needs who receive care in a well-functioning system

 

NPM 11: Percent of children with and without special health care needs, ages 0 through 17, who have a medical home

 

Strategy: Families are partners in decision making, and are satisfied with the services received

 

Fam­ily-centered care ensures that the organization and delivery of services, including health care, meet the emotional, social, and developmental needs of children; and that the strengths and priorities of their families are integrated into all aspects of the service system. Family-centered care recognizes that families are the ultimate decision-makers for their children, with children gradually taking on more of this responsibility as they mature.

 

Objective: Annually increase the number of person-centered plans developed with the BrainSTEPS teams by 5% each year

 

ESM: Number of person-centered plans developed by BrainSTEPS teams

 

The BFH, in partnership with Department of Education and the BIAPA, has implemented a brain injury school re-entry program called BrainSTEPS (Strategies, Teaching Educators, Parents, and Students). The program provides services to any student who has experienced an acquired brain injury or with a prior injury which is still impacting student performance. Once referred, the student receives services from the point of referral through school graduation. BrainSTEPS coordinates collaboration between families and the medical, rehabilitation, and education sectors to ensure students receive care in a well-functioning system. Families are partners in the development and monitoring of individualized, student-centered care plans. The BrainSTEPS program will continue in 2021 through BIAPA.

 

BrainSTEPS will continue to provide students, families, school teams and medical providers with consultation to assist the student’s transition back into the classroom setting. The program will focus on continuous quality improvement efforts to ensure streamlined collaboration among each student’s care team and family. This will allow for children and youth with special health care needs to receive care in a well-functioning system. Through collaboration with students, their families and the care team, a person-centered plan will be created. Person-centered plans will allow for the student’s and family’s needs and concerns to be addressed as well as, for the family to be partners in the decision making. To promote consistency of the BrainSTEPS teams, BIAPA will provide training, workshops, and technical assistance to team members to ensure they are following the established program model. BrainSTEPS Team Leaders will establish annual individual team goals for their coverage area. Goal development will include outreach to the medical community. The plan is to increase overall knowledge of the program and build a network within the medical community to ensure students are referred to the program.

 

The BrainSTEPS program has developed a Concussion “Return to Learn” Management Team Model. This initiative enables schools to take ownership and implement in-house school Concussion Management Teams. These teams systematically improved the effectiveness of the program by ensuring students with mild TBI receive necessary accommodations and appropriate referrals to BrainSTEPS. Program personnel will continue to provide training and technical assistance to Concussion Management Teams on concussion recognition and best practices. The additional support will ensure a designated number of new students are referred to the program along with helping additional school districts implement Concussion Management Teams within their school district.

 

There is potential for the BrainSTEPS program model to be adopted by other states, as Colorado has already adopted the program and the BFH has received other inquiries. The BFH looks forward to collaborating with and providing assistance to other states who seek to implement “return to learn” programming. The BrainSTEPS program will continue to collect and use programmatic data to help measure the population served, pinpoint additional areas for outreach and aid in overall evaluation of program materials and training curriculum. The program will continue to participate in the CDC Evaluation of Return to School Programs for Traumatic Brain Injury.

 

Objective: Annually increase the number of families reporting through satisfaction surveys that they were partners in decision making through the Community to Home program by 5%

 

ESM: Number of Families reporting satisfaction measures through surveys

 

In late 2019, the BFH implemented the Community to Home (C2H) Program to identify and eliminate systemic issues for CSHCN. The program focuses on populations in rural areas as CSHCN and their families face a variety of barriers to accessing services.

 

Utilizing the evidence-based Community Health Worker (CHW) model, CHWs are utilized to provide in-home care coordination and education within six rural regions of PA. CHWs will engage with families to assess their needs and develop an individualized care management plan with measurable goals. The CHW will connect CSHCN and their families to appropriate supports and services to better address their needs. The goal of the C2H program is to provide CSHCN and their families with tools to allow them to become self-sufficient and connect them to appropriate resources. This will assist with improving the percent of children and youth with special health care needs who receive care in a well-functioning system. Also, CSHCN and their families will be active members of the care management plan in order for them to be partners in the decision making and express their satisfaction or dissatisfaction with the services provided. CHWs will support families by helping them learn how to navigate the necessary health and human services systems.

 

The target population will include rural, low-income families of CSHCN with a recent diagnosis as well as CSHCN who have recently moved to or within PA. Families will be served using a short-term delivery process, and a needs assessment will occur during the initial home visit. The assessment results along with input from the families, will inform the development of a care management plan customized to meet the family’s needs. The care management plan consists of goals and necessary steps needed for CHWs to assist families in navigating necessary systems. The CHW will provide information and referrals to connect CSHCN and their families to the services needed to succeed in living with their special health care needs. The CHWs work collaboratively with other systems of care to deliver and connect CSHCN and their families to the most appropriate services. Throughout all C2H processes the family and CSHCN will be involved.

At the conclusion of C2H services, families will be provided with a client satisfaction survey that will measure their engagement and overall satisfaction with the program. The survey will also measure if they felt they were partners in decision making when it came to the development of their plan and individualized goals for their family. It is expected that 75% of families will report that they felt they were partners in decision making while enrolled in C2H for this first year of the program.

 

Strategy: CSHCN receive coordinated, ongoing, comprehensive care within the medical system

 

A quality medical system ensures that children have continuity of care from visit to visit, from infancy through transition into adulthood. In addition, the medical system must be supported to provide care coordination services so that each family and the range of professionals serving them work together as an organized team to implement a specific care plan and to address issues as they arise. Collaboration between the primary, specialty, and subspecialty providers to es­tablish shared management plans in partnership with the child and family, and to clearly articulate each other’s role, is a key component of a quality medical system. Equally key is the partnership between the primary care provider and the broad range of other community providers and programs serving CSHCN and their families.

 

Objective: Annually increase the number of collaborative agreements with medical providers through the Child Rehabilitation and Sickle Cell Community-Based programs by eight per year

 

ESM: Number of medical provider collaborative agreements established by Child Rehabilitation and Sickle Cell Community-Based programs

 

The Child Rehabilitation and Sickle Cell Community-based programs are Title V funded programs that are part of the SCP. The SCP shifted the focus of services to increase system-level change and support beginning in October of 2020. This change requires the grantees to identify and develop collaborative agreements with medical care providers across the state. The nature of the collaborative agreements will be based upon the needs of individuals with a SCP-related condition and the needs of the care providers, and will be required to support and increase communication between medical care providers (such as health systems, insurance providers, primary care practices, specialist care, mental/behavioral care providers, and other health care providers) to reduce service duplication, streamline referral processes, simplify care plans and improve information sharing across care providers. Increased collaboration between care providers will result in individuals experiencing coordinated and comprehensive care, and also allow care providers to improve systems-function through policy and procedural changes.

 

By 2021, the SCP will have established a baseline, a plan for annually increasing the number of collaborative agreements between the SCP and medical care providers and a defined expectation to increase the number of agreements so as to maximize participating providers without impacting the quality of cross-system communication.

Objective: Increase the percent of families who successfully complete the Medical Home Community Team (MHCT) home visiting program by 3% annually

ESM: Percent of families who successfully complete the MHCT home visiting programs

Receiving care within a well-functioning system can improve the health status of individuals, families and communities at large. Health systems depend on a comprehensive and integrated range of clinical and public health interventions that respond to the health problems identified within the community as well as mechanisms to hold providers accountable for access and quality and to ensure that the voice of those receiving services are heard. The Philadelphia Department of Public Health established the MHCT to partner with Pennsylvania- American Academy of Pediatrics Medical Home Program to serve families whose children receive their health care at a medical home practice in Philadelphia. The team provides home-visiting services to families of children with and without special healthcare needs, ages 0 to 21 years. Services include comprehensive needs assessments, individualized health education and referrals and linkages to behavioral health and community organizations. The MHCT receives referrals from family-centered medical homes and partners with the pediatric care team and child’s family to ensure all medical and social needs are met. After a full assessment is conducted with the family, an intervention plan is developed to meet the family’s stated goals. MHCT staff supports families until the connection to appropriate care is made and families are better able to navigate through health and social systems. MHCT provides person-centered, family focused, comprehensive, and coordinated supports to enrolled children and their families. This program aims to improve the system of care by developing referral processes of families from medical home practices to the MHCT, guiding families through non-medical systems that impact the child’s well-being, providing individualized health education related to building skills for advocacy and information-seeking, and ensuring that systems are communicating with the medical home to fully support the needs of the family. The BFH is choosing to measure the number of families who successfully complete the MHCT program to assess if the system is functioning well for families with CSHCN, assisting them in obtaining optimal health.

 

Strategy: Initiate regular meetings and collaboration between the Department of Health and Department of Human Services

 

The Department of Health (DOH) and DHS each have an integral role in providing services to the maternal and child health (MCH) population. As PA’s Medical Assistance administrator, DHS oversees many programs serving vulnerable populations, including CSHCN. Through collaboration, it can be ensured that the DOH is not duplicating services provided by DHS but is preserving Title V funds for otherwise unmet needs of the MCH population.

 

Objective: Convene quarterly meetings between agencies that provide services related to CSHCN

 

ESM: Number of meetings held annually between DOH and DHS (CSHCN)

 

The BFH will continue to collaborate with the PA DHS’ Office of Medical Assistance Programs in 2021. Meetings will be held to discuss issues within the system of care for CSHCN, share resources, reduce duplication of services, and ensure that the proper funding sources are being utilized for individuals and families. This collaboration will strengthen the system of care for CSHCN across PA.

 

Strategy: CSHCN are screened early and continuously for special health care needs

 

Within the CSHCN domain, screening includes ongoing monitoring and assessment of children and youth to promote health and well-being through family-centered care. It is critical to identify, as early as possible, chil­dren in the general population who have special health care needs so that they and their families can receive appropriate services to reduce long term consequences and complications. CSHCN also require ongoing assessments to identify newly emerging issues including developmental and behavioral issues, oral health, and psychosocial issues, and to prevent secondary conditions that may interfere with development and well-being.

 

Objective: Annually increase the number of children screened for Autism Spectrum Disorder through the Autism Diagnostic clinic by five each year

 

ESM: Number of children screened for Autism Spectrum Disorder through the Autism Diagnostic clinic

 

In 2021, the BFH will continue expansion of the Autism Diagnostic Clinic (ADC) through the grantee Easterseals Eastern PA, in collaboration with Children’s Hospital of Philadelphia (CHOP). This program utilizes telehealth technology to increase access to autism evaluations, diagnosis, parent education, and referral for treatment. A third-party entity will be utilized to evaluate the program for overall effectiveness and the feasibility for replication in other areas of the state as well as diagnosing conditions other than Autism Spectrum Disorder (ASD). The ADC currently has the capacity to identify and screen children as young as 18-months for ASD, though most are between the ages of two and five years. Once a child is diagnosed, the ADC will provide care coordination services to assist families in enrolling in therapeutic and other services, as well as training families in applied behavioral analysis while services are initiated. By identifying ASD and initiating services early, outcomes across the life span for these children and families can be significantly improved.

 

By 2021, the ADC will have developed a baseline for the number of children screened within Berks County (the ADC’s primary site) and have established an annual expected increase in screenings. The ADC will develop and prepare to implement expansion plans into a second county, while also preparing a plan for expansion into a third county by June 2023.

 

Strategy: Community-based services are organized so families can use them easily

 

A community-based system of services is an infrastructure that operates across sectors, and multiple service programs – each with its own funding streams, eligibility requirements, policies and procedures – to serve CSHCN. Given this complex structure of systems, it is imperative that Title V funded programs work within communities to facilitate structure and organization of available services.

 

Objective: Conduct outreach and BrainSTEPs program promotion to increase referrals by 15 per year

 

ESM: Number of referrals to BrainSTEPS program

The BrainSTEPS program will collaborate with the Department of Education and BIAPA to conduct outreach and program promotion in the community. Families with school-aged children and professionals working with children in medical and school settings will be the target of these outreach opportunities, to raise their awareness of BrainSTEPS services. Outreach and promotion will focus on increasing knowledge of the program, the population it serves, and how to easily access resources. Increased awareness of the BrainSTEPS program, services, and resources will contribute to the system of care for CSHCN, by allowing earlier identification and treatment of mild TBI, and fewer long-term complications. The BFH, along with partners, will participate in conferences and other outreach opportunities that come available in order to educate individuals on the BrainSTEPS Program.

 

Objective: Annually increase the number of calls received through the Special Kids Network (SKN) helpline by 25 calls

 

ESM: Number of calls received through the SKN Helpline

 

The Special Kids Network (SKN) helpline is housed within the BFH and answered by a program administrator. The SKN helpline provides information about resources and services and information on how to navigate different systems of care via telephone. Through the SKN helpline, the BFH is helping families connect with community-based services and understand their organization so that families can use them more easily.

 

By doing so, the BFH aims to improve the percent of children and youth with special health care needs who receive care in a well-functioning system. The SKN helpline is also used to receive referrals to the Community to Home (C2H) program. The BFH will collaborate with organizations serving CSHCN to advance PA’s system of care for CSHCN that will assist with annually increasing calls. The BFH will use partners such as PEAL, Parent to Parent and the C2H grantees, CareStar and Health Promotion Council, to assist in the promotion of the SKN helpline. The BFH and the grantees will distribute information regarding the SKN helpline and will exhibit at conferences throughout PA.

 

Objective: Annually increase the number of partnerships engaging community-based providers established by Child Rehabilitation and Sickle Cell Community-Based programs by eight per year

 

ESM: Number of community-based provider partnerships established by the Child Rehabilitation and Sickle Cell Community-Based programs

 

The Child Rehabilitation and Sickle Cell Community-based programs will support and develop partnerships with and between community-based service providers as the SCP programs shift to systems-level supports. Grantees will seek out new and known community-based service providers to establish new or strengthen existing partnerships. These partnerships will be used to support education and communication related to the SCP-related conditions within the everyday-living setting (such as education, employment, religious worship and recreation) and to support increased integration of CSHCN into community activities. The partnerships will also be used to identify impactful social determinants of health and to remediate barriers to care and community integration. Through this work, the SCP programs will be promoting increased interconnectivity and organization of community-based providers – which will also strengthen the overall system of care.

 

By 2021, the SCP will have established a baseline. Afterward, the SCP will develop annual objectives for increasing the number of community-based provider partnerships established each year.

 

Strategy: Youth with SHCN receive services to make appropriate transitions

 

The primary goal of Title V in the transition of CSHCN is to improve the system that serves them while simultaneously preparing youth and their families with the knowledge and skills necessary to promote self-determination, wellness, and successful navigation of the adult service system. As adolescents approach adulthood, they take on increasing responsibility for their health and health care. For youth with special health care needs, this transi­tion is especially important, as their medical needs may be complex and they will eventually need to manage their medications and other aspects of their health themselves.

 

Objective: Annually increase the number of youth with special health care needs receiving evidence-based or -informed leadership development training through the Leadership Development and Training Program by 4 per year

 

ESM: Number of youth with special health care needs receiving evidence-based or -informed leadership development training through the Leadership Development and Training Program

 

The BFH partners with PEAL to implement the Leadership Development and Training (LDT) program which provides Parent/Family and Youth Leadership Institutes. PEAL’s mission as the Parent Training and Information Center and Family to Family Health Information Center for PA aligns with a number of the priorities of the BFH. PEAL has the capacity to conduct outreach and deliver leadership development and training activities to youth with special health care needs and their families. The Parent/Family Leadership Institute addresses relationships, sexuality, dignity of risk, and supporting self-advocacy and the Youth Leadership Institute creates a network among peers while building leadership and self-advocacy skills. The BFH along with PEAL will increase the outreach and promotion of the Youth Leadership Institute to increase attendance. By increasing attendance to the Youth Leadership Institute, the BFH and PEAL will be able to reach more individuals and prepare youth for successful transition to adulthood, including adult health care.

 

Objective: Of youth aged 14 and older being served in Community to Home, 50% will have appropriate transition plans within 6 months of receiving services

 

ESM: Number of youth 14 and older enrolled in Community to Home program who received a transition plan to transition to adult healthcare

 

Youth with special health care needs who are of transition age of 14 years and older are a sub-population of CSHCN and face many challenges, including transitioning to the adult health care system. In the Community to Home (C2H) program, individuals enrolled who are 14 years and older will have an individualized care plan that includes a transition plan preparing transition to adult health care, independent living, post-secondary education and employment. Youth transition plans will be reviewed and monitored by the BFH for completeness and thoroughness. The BFH objective is that at least 50% of youth 14 years old and over enrolled in C2H will have appropriate transitions plans as part of their individualized care plans. The C2H program is in the process of being implemented and will be fully implemented by 2021.