Priority: Support effective health-related transition to adulthood for adolescents with special health needs.
Key strategies to address this priority include increasing access to health transition resources and information for families, youth, and providers; providing culturally and linguistically appropriate services and supports to youth and their families throughout the transition process; ensuring youth voice in efforts to strengthen the system and align services around health transition; and engaging internal and external partners to strengthen the system and align services.
Objective 1 (NPM 12). By 2025, increase the percent of youth with special health needs who received services necessary to transition to adult health care from 17.9% (NSCH 2016-2017) to 40.3%.
The Division for Children and Youth with Special Health Needs (DCYSHN) has several objectives to address health transition for youth and young adults with special health needs (YYASHN). DCYSHN will increase access to health transition resources and information for youth and young adults, their families, and providers by continuing the development and testing of a YYASHN Health Transition Toolkit that will promote transition best practices such as the Got Transition Six Core Elements, the Charting the Life Course Framework, the MA Family Engagement Framework (see the Crosscutting domain for more information), and a wide variety of other resources. The Toolkit will take a holistic approach to supporting this population, including topics such as nutrition, physical activity, mental health, substance use, sexual and reproductive health, public benefits, and other areas of importance to youth and families. Graduate public health students from local colleges and universities will continue to take previously written drafts for each section, share them with subject matter experts, parents and YYASHN to get their input on the drafted modules, edit them, and then conduct a soft launch by testing selected modules online before offering them in the public domain. MDPH was selected by the Boston University School of Public Health Center of Excellence in MCH to precept a 2023 MCH Practice Fellow to continue to develop, promote, and evaluate the Toolkit from January to December 2023.
DCYSHN will ensure youth and young adult voice is sought, listened to, and applied throughout its work on the toolkit project and in general by setting up a compensated and supported youth and young adult advisory council (YYAAC) to inform and support the Division’s health transition activities. DCYSHN will employ transition principles from the MA Family Engagement Framework into its work to engage youth and young adults with special health needs and their families. The YYAAC will hold its first meeting in early FY24.
DCYSHN will also convene and engage with internal and external partners to strengthen the system and align services around health transition for youth and young adults through collaborative opportunities related to transition. This includes continuing to work with other state agencies, the medical community, the MA Chapter of the American Academy of Pediatrics (MCAAP) and community-based organizations to increase awareness of transition-related resources among pediatric and adult providers and promote strategies to bridge the pediatric and adult provider systems. DCYSHN staff will continue to participate in the MCAAP CYSHCN Committee, as well as workgroups on mental/behavioral health, telehealth, and respite care. DCYSHN will provide training and technical assistance on health transition to MassHealth CARES for Kids providers through the upcoming MDPH Care Coordination Assistance, Training, Education and Resources (CCATER) Center and use the Blueprint for Change for CYSHCN to assist with systems change efforts (see Additional activities to improve the system of care for CYSHN below).
The DCYSHN Director will continue to serve on the Steering Committee for the multi-disciplinary statewide Neurodevelopmental Disabilities (NDD) Transition Initiative in collaboration with the Boston Children’s Hospital Autism Clinic, the Brigham and Women’s Hospital Weitzman Family BRIDGES Adult Transition Program, and other state agencies and medical provider organizations from across the state. The NDD Transition Initiative will hold its second summit in November 2023 and the DCYSHN Director is scheduled to be the keynote speaker.
DCYSHN involvement on several statewide transition-related coalitions has broadened to working with many more sister state agencies, universities, and community partners in strengthening the system and aligning services around health transition for youth and young adults with special health needs, and this will continue in FY24. These coalitions include: the Charting the LifeCourse Community of Practice led by the MA Developmental Disabilities Council; the MA Partnership for Transition to Employment led by the UMass Boston Institute for Community Inclusion; and the Transition IEP Working Group led by MA Advocates for Children. The intent is to align services to promote a holistic, wraparound approach to transition to adulthood for YYASHN.
Care Coordination
The Care Coordination Program will continue to implement its revised standards and processes on health transition, providing readiness assessments, information, and transition support for all enrolled youth ages 14 and over and their families. Care Coordination practice standards require staff to send letters to families of youth receiving services at ages 14, 17 and 21. The ESM for this performance measure is the percent of youth aged 14 and older receiving services from the MDPH Care Coordination Program who receive health transition information and support from their Care Coordinator. The Care Coordination program is in the process of translating the transition letters to Haitian Creole, Vietnamese, and Portuguese.
The Care Coordination Program will continue to incorporate the six core elements of Got Transition for moving from pediatric to adult healthcare into their work with families and providers. The program will continue to implement the evidence-informed, person-centered planning tool Charting the Life Course Framework in all activities with families as it becomes a common approach and shared concepts/language for the Division, state partners, and families. This framework, together with the MA Family Engagement Framework, the Blueprint for Change for CYSHCN, and the National Standards for Care Coordination, will ensure that services respect the uniqueness of each family and their racial, cultural and linguistic differences and create and promote pathways for partnership in the transition process. As part of the transition from enabling services to a population health-based services model, the Care Coordination Program is revising how it provides education and training around health transition by intentionally incorporating the Charting the Life Course and Family Engagement Frameworks and the Blueprint for Change for CYSHCN with an emphasis on providing racially equitable trainings and technical assistance that emphasizes quality of life and well-being.
continue to share information about health transition and the MDPH definition of health transition with all callers who have children ages 14 and older. This will be used to ascertain families’ knowledge and experiences with transition. Based on what is learned during these calls, staff will follow up with resources and support. Materials will be included in informational packets sent to callers.
SSI and Public Benefits Training and Policy
In accordance with its program redesign in FY22, the Public Benefits and Health Policy program will emphasize population health goals in FY24 to assure that children, youth and young adults receive the benefits to which they are entitled, access quality health care, retain comprehensive medical coverage, and effectively transition from pediatric to adult health care and benefits. The Public Benefits and Health Policy Specialist will strengthen capacity across the workforce and among families by providing training to DCYSHN program staff, youth/young adults, parents/caregivers, providers and other external partners. Trainings will continue to cover the essential topics of SSI, MassHealth and transition to adult care and benefits, while expanding scope to include additional public benefits, tax credits, tools such as ABLE accounts that enhance education, employment, and life-course financial security, and health-related social needs. A resource guide will be provided to training participants. Trainings also will introduce health policy issues affecting CYSHN, young adults and families. Trainings for parents and youth will promote family engagement, including a benefits training for parents at the annual Visions of Community conference. Trainings will be offered in English and Spanish by the bilingual specialist, and through interpretation in at least two additional languages, building upon a training on SSI for Vietnamese parents in FY23. The Specialist will provide approximately 150 individual technical assistance consults during FY24 using a coaching and capacity-building model. In this way, the Specialist will partner with DCYSHN staff or external providers working with the child/family and support the team to effectively address the benefit issue while building the team’s expertise and the family’s knowledge and effectiveness. The program’s health policy role also has expanded; the Specialist will monitor existing and emerging public benefits/financing and state and federal health-related policies and legislation that concern youth and young adults with special health needs and their families and will brief DCYSHN leadership and staff on key issues to support the Division’s increasing engagement in public policy development.
Pediatric Palliative Care
The Pediatric Palliative Care Network (PPCN) will continue to assess the needs of youth and young adults as they transition to adult care and will begin to develop standards for transition planning specific to the needs of families served by the program. The PPCN will assure representation of youth and young adults with life-limiting and serious illness on the Advisory Council being developed for the Division.
Priority: Strengthen the capacity of the health system to promote mental health and emotional well-being.
PPCN will continue to address the physical, emotional, social, and spiritual needs of children with life-limiting illnesses and their families. PPCN will conduct monthly meetings with the program managers of the seven contracted community-based agencies to address cross-cutting issues among the agencies providing home-based palliative care. A key topic area for these meetings will be peer-to-peer learning and training to address the emerging increased acuity of psychosocial needs of the children and families receiving PPCN services. The PPCN Program Director will use these meetings, bi-annual provider education meetings and individual site visits to promote training and skills acquisition within internal PPCN staff to increase accurate assessment and timely referrals to quality mental health services for PPCN clients and their families. The PPCN Program Director will also partner with outside experts within pediatric palliative care to learn more about cutting-edge models and interventions and review them for possible adaptation and application to the program. Within the focus of mental health and whole family wellbeing, the PPCN will begin an environmental scan specific to bereavement care needs.
Community Support Line
The new CSL assessment includes questions related to trauma and trauma history. This opens the conversation about referrals to mental/behavioral health services, creates opportunities for parent education and sets the ground for collecting data related to trauma in the population served. CSL staff will continue to connect families of CYSHN with local mental health services and provide parent education regarding the impact of treatment and therapies. CSL staff will also refer families to other state agencies such as DDS and DMH. Staff will also continue to respond to the increased mental health needs of CYSHN and their families due to COVID-19 by connecting them to appropriate resources.
CSL staff will continue to build relationships with communities and families of color to better understand their customs and beliefs and reduce the stigma around behavioral and mental health needs.
DCYSHN Mental Health Initiatives
In addition to programmatic efforts, DCYSHN will continue the following mental health activities in FY24:
- The MDPH COVID Community Impact Survey (CCIS) 2.0 will be disseminated in FY24 and draws upon the input of DCYSHN programs to include questions about mental health for CYSHN and disabilities. CCIS 1.0 findings indicated that both youth and young adults with special health needs ages 14-24 and caregivers of CYSHN experienced the greatest inequities affecting mental health.
- As described under the Health Transition Priority, the Health Transition Toolkit will include a module focusing on mental health for youth and young adults. DCYSHN will conduct a mental health survey for their parents and caregivers to inform the toolkit and DCYSHN practices when working with young people and their families.
- The DCYSHN Director will continue to chair the legislatively established MDPH PANDAS/PANS Advisory Council charged with advising on research, diagnosis, treatment, and education related to Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections and Pediatric Acute Neuropsychiatric Syndrome (PANDAS/PANS). These neuroimmune disorders often cause an alarming change in behavior masking underlying medical strep and bacterial infections. Based on the devastating nature of these conditions to children and their families, as well as the cost to families, school systems, medical providers and insurers, DCYSHN will engage families about what is needed to support their mental health needs at the systems level.
- DCYSHN “Learning Thursdays” set aside time each month for DCYSHN staff to learn about emerging topics of importance to CYSHN. DCYSHN will invite family-led community organizations to present on mental health and trauma-informed/healing-centered care for the PANDAS/PANS population and CYSHN with fetal alcohol syndrome disorder.
Objective 2. By 2025, increase the number of infants and toddlers enrolled in Early Intervention who demonstrate improved positive social-emotional skills to 57.2% from baseline (49.3% in FY21).
Early Intervention
The Early Intervention Division (EI) anticipates revising its evaluation plan during FY24 to reflect a more targeted and streamlined approach to achieving improved social-emotional skills. EI expects to continue its emphasis on infrastructure improvement in FY24, which will have a direct impact on the ability of EI providers to implement high-quality services using the Parents Interacting with Infants (PIWI) model. All are part of EI’s logic model for increasing the number of infants and toddlers who demonstrate improved social-emotional skills:
- Develop and deliver a structured orientation for all appointed members of the Interagency Coordinating Council (ICC) annually to ensure members receive training materials and have aligned expectations, leading to effective ICC meetings that improve EI's implementation of the IDEA.
- Create Key Performance Indicator Reports available to EI staff monthly, and train EI staff to interpret the data and share them with contracted EI programs.
- Hire a Comprehensive System of Personnel Development Coordinator to study and revise the existing personnel certification system and improve the professional development system, and a Finance Manager to develop and disseminate audit procedures to integrate within the general supervision activities.
- Engage key representatives from the state's Part C system to identify a new instrument with which to collect outcome data given the publisher’s intent to discontinue the Battelle Developmental Inventory version 2.
- Continue to improve the EI state database to ensure collection of accurate, reliable, and valid data, including activating business rules and validations to check data quality.
Additional activities to improve the system of care for CYSHN
Interagency Collaborations for CYSHN
MDPH will advance the integration and coordination of services and supports provided to children and youth with special health needs and their families by meeting regularly with other state and community agencies through a collective impact approach. In addition to collaborations described above, DCYSHN will participate in the following initiatives:
- In FY23, DCYSHN negotiated an interagency service agreement with MassHealth to fund a new statewide MDPH Care Coordination Assistance, Training, Education and Resource (CCATER) Center in FY24, moving the MA Title V Care Coordination program down the MCH pyramid from enabling services toward a sustainable population-health model. DCYSHN received technical assistance to develop this model from HRSA’s Population Health Learning Journey led by the MCH Workforce Development Center and Public Health Improvement Partners in FY22 and 23. MassHealth has similarly moved to a tiered pediatric Accountable Care Organization Enhanced Care Coordination model under its 1115 waiver renewal that will provide a total case management benefit to participating providers to coordinate care for children with medical complexity under their new MassHealth CARES for Kids program, also to be launched in FY24. The CCATER Center will provide training and technical assistance to CARES providers for care coordination, family support, and clinical technical support services to meet their program regulatory training requirements. The CCATER Center’s Steering Committee, developed to advise the CCATER Center’s strategic plan, now includes MassHealth, the Federation for Children with Special Needs (FCSN), the MDPH Office of Health Equity, several provider organizations and two multicultural families who have received DPH care coordination services. Racially equitable family engagement will be incorporated and modeled throughout the Center’s activities to build the system’s capacity to serve CYSHN, particularly those with medical complexity. Current best practices such as the Blueprint for Change for CYSHCN, the National Care Coordination Standards for CYSHCN, Got Transition, the MA Family Engagement Framework, and others will be intrinsic training topics and will be operationalized, monitored, and evaluated as the CCATER Center is developed in FY24.
- The Care Coordination program will continue to convene regional networking and collaboration meetings in each region and statewide collaboration and training meetings twice a year. The goals of these meetings are to foster collaboration, to facilitate trainings, and to provide updated information regarding trends that multiple agencies identify in working with families, youth and children with special health needs. These goals continue to be an integral part of the Care Coordination program’s strategic plan to move from enabling services towards population health-based services.
- DCYSHN will continue to be an active member of the MA Lifespan Respite Coalition prioritizing respite care within and across state agencies. In FY23, DCYSHN continued to raise up the respite needs of caregivers of CYSHN and conceived of and shared ideas for two innovative respite interventions with community-based organizations that applied for and received CDC/MA EOHHS American Rescue Plan funds for respite projects. DCYSHN will monitor and advise on the progress of these two projects: 1) the FCSN’s Caregiver-to-Caregiver Respite Exchange Network and 2) Boston Children’s Hospital’s Complex Care Services partnership with local nursing colleges and universities to train nursing students about children with medical complexity by providing respite care for these families.
- MASSTART will continue to collaborate with the MDPH School Health Unit and Boston University SHIELD (School Health Institute for Education and Leadership Development) on the CMC-SHARE: Children with Medical Complexity School Health Resources and Education Project. This multi-pronged effort disseminates, facilitates, and houses valuable resources and training options for school nurses to aid in their care planning and delivery for students requiring complex medical care. It also includes technical assistance in effectively engaging school nurses, interdisciplinary teams, advocates and families in conversations that highlight community relationships and collaboration that can promote high quality and equitable care for this student population.
- The SSI and Public Benefits Training and Policy program will continue to participate in several inter-agency linkages at policy and systems levels, elevating issues affecting CYSHN and their families and strengthening system integration. The program’s Specialist will represent MDPH on DESE’s Special Education Advisory Council, which addresses educational issues including transition planning for students to post-secondary education or work; the EOHHS Families and Children Requiring Assistance Advisory Board, which addresses comprehensive community-based family supports as alternatives or complements to court involvement in behavioral supervision of children and youth; a multi-agency Transition Age Youth initiative that includes the EOHHS Office of the Child Advocate, DCF and MassHealth; and a MassHealth Redetermination work group, among others. To build expertise at a service level, the Specialist will provide public benefits trainings to service coordinators and vendors in child-serving agencies including DDS and MCB and present updates on benefits and policies at the regional interagency collaboration meetings convened by the Care Coordination program.
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