Massachusetts has two priorities for Children and Youth with Special Health Needs for 2020-2025:
- Support effective health-related transition to adulthood for adolescents with special health needs.
- Strengthen the capacity of the health system to promote mental health and emotional well-being.
Priority: Support effective health-related transition to adulthood for adolescents with special health needs.
MDPH defines health transition as the transition from the pediatric to the adult health care system and self-management of health and related needs as is developmentally appropriate. Progress towards this priority is measured by the percent of children with special health needs who received services necessary to make transitions to adult health care. Key MDPH programs addressing this measure include Care Coordination, Community Support Line, SSI and Public Benefits Training and Policy, MassCARE, Youth Transition Initiatives and the Office of Family Initiatives.
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%.
National survey data and clinician, family and youth reports indicate that transition from pediatric to adult health care and acquisition of self-management skills remain major issues for many youth with special health needs (YSHN). NSCH combined 2020-2021 data indicate that 24.2% of YYASHN aged 12 through 17 in Massachusetts received the services necessary to make transitions to adult health care. This is a decrease from 37.2% in the 2018-2019 NSCH. However, the 2018-2019 percentage for this NPM had to be interpreted with caution due to small sample size and large confidence intervals. The 2020-2021 percentage still exceeds the 2016-2017 NSCH percentage of 17.9%. It is also likely that the pandemic, which resulted in fewer well child visits, contributed to fewer youth receiving transition related services than would have otherwise.
The ESM for NPM 12 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. Selection of these strategies and this measure are informed by the clinical report, Supporting the Health Care Transition from Adolescence to Adulthood in the Medical Home, jointly authored by the AAP, American Academy of Family Physicians and American College of Physicians,[1] and Got Transition’s Six Core Elements of Health Care Transition,[2] which is aligned with the algorithm specified in the clinical report and defines the basic components of health care transition support. As stated in the annual report, care coordination is a critical part of transition planning for CYSHN and may be instrumental in supporting the transfer of care from pediatric to adult medical subspecialists. Six Core Elements identifies care coordinators as key members of the collaborative team to support health care transition to adulthood. MDPH Care Coordinators can assist and complement the medical home’s work on health transition readiness by providing information and support to families of transition age youth and young adults.
Care Coordination
Care Coordination Program protocol is to send letters to families receiving Care Coordination services who have children aged 14, 17 and 21 years old to notify them of the availability of assistance and support from the program during these transition planning years. Care Coordinators provide families with tools and information designed to promote health transition readiness and assist with the health care transition process. In FY22, the number of youth targeted for transition support per program protocol (minimum of receiving a transition letter at the appropriate age) who received at least one transition service was 108 out of 167 (65%). The list of clients who are of transition age (denominator) is usually run two times a year, alerting Care Coordination staff to follow up with those families. Transition lists were run June 2021 (right before start of reporting period) and then in January 2022, so some clients may have received transition services immediately prior to the start of FY22 and might not be captured in these numbers if they did not receive any other transition-related service in FY22. Care Coordinators worked together with families to assess their need for support and services related to health transition, connected families to adult-service agencies and helped parents and youth assess the need for legal guardianship. In concurrence with the family-centeredness principle of the program, the Care Coordinators also connected families to one another to share experiences and learn from one another. In addition, the program reached out to non-English speaking families from different cultures to promote equitable distribution of information and access to services.
Youth Transition Initiatives
The Division for Children and Youth with Special Health Needs (DCYSHN) continued to maintain web pages focused on health and health-related transition resources for youth, families and providers (www.mass.gov/dph/youthtransition). Staff keep the site current by identifying new resources and reviewing existing ones. The site provides multiple links including to www.gottransition.org, a federally funded resource center designed to assist youth and young adults move from pediatric to adult health care.
DCYSHN staff members presented health-related transition information at conferences and other venues attended by youth, families and providers. In May 2022, the DCYSHN Director, a CDC Foundation-contracted MCH program manager and former interns presented at the 2022 Annual AMCHP Conference about their process of creating a Health Transition Toolkit for youth and young adults with special health needs titled “Prioritizing Youth & Family-Professional Partnerships to Create a Health Transition Toolkit for Youth and Young Adults with Special Health Needs.” This presentation was designed to educate attendees about the importance of meaningful engagement with families and young people at every step of a project and our goals around creating a health transition toolkit that is impactful, equitable, holistic and addresses the barriers that exist in navigating health care transition and health self-management for youth and young adults with special health needs.
The DCYSHN Director also participated in several statewide Health Transition work groups, including the Transition Subcommittee of the MA Chapter of the American Academy of Pediatrics CYSHCN Committee; the Steering Committee for the statewide Neurodevelopmental Disabilities (NDD) Transition Initiative in collaboration with the Boston Children’s Hospital-Brigham and Women’s Hospital BRIDGES Adult Transition Program; and the MA Advocates for Children Transition Work Group that produced an updated Transition Planning Form and a Student Profile Questionnaire for Individualized Education Programs that includes health transition. The NDD Transition Initiative addressed the major challenge of the lack of adult practitioners prepared to provide healthcare to transitioning youth and young adults with special health needs by implementing eight health transition pilot projects tested at participating pediatric and adult hospitals, medical centers, and community health centers by teams of pediatricians, internal medicine providers and family members.
Several transition-related projects had graduate-level public health intern support in FY22. The interns worked to increase access to health transition resources and information for YYASHN, their families and providers by starting the development of a Health Transition Toolkit targeted primarily to youth and young adults. The interns drew upon previous work produced by earlier intern teams including literature reviews, key informant interviews, focus groups and advisory meetings conducted with caregivers and YYASHN, and subject matter expert interviews in FY21. This work included the initial drafts of the following:
- Data analysis and interpretation from youth and family caregiver stakeholder engagement for the development of the Health Transition Toolkit.
- Drafts of the core elements of the Health Transition Toolkit including: Health Care, Guardianship, Self-Management & Personal Health, Caregiver & Family Wellbeing, Public Benefits, Advocacy, and Community Support
- Additional Toolkit holistic section drafts including Sexual & Reproductive Health and Mental Health.
- Strategy and stakeholder engagement on the creation of a youth and young adult with special health needs advisory council (YYAAC).
Community Support Line
The DCYSHN toll free statewide Community Support Line (CSL) provides information, technical assistance, and resources for families with children and youth with special health needs and the providers serving these families. The CSL fields phone calls daily with questions about services and resources for children and youth with special health needs. Staff assess the child’s and family’s needs (including childcare, special education, emergency planning, home and vehicle accessibility; housing; durable medical equipment, medical home, mental health, respite, SSI and other public benefits, transportation and, beginning at age 12, anticipatory guidance around transition); provide information about resources, parent education and technical assistance; and, when appropriate, make referrals to programs and services at DPH, other state agencies and community-based organizations. Anticipatory guidance around transition includes providing information to families about transition from pediatric to adult care, independent living skills and resources, guardianship, job training, MassHealth and other public benefits, and opportunities for social interactions and meaningful relationships. Of the callers who contacted the CSL in FY22, 16% received technical assistance on transition planning, including health care transition.
SSI and Public Benefits Training and Policy
Public benefits trainings were presented to 172 people including educators, health care providers and 80 parents of transition-age youth and young adults transitioning into the adult health care service system. The SSI Public Benefits Training and Policy Specialist served as a panelist for the “Transition Planning for Caregivers of Children with Intellectual Disability” conference sponsored by Boston Children’s Hospital and the BRIDGES Adult Transition Program. Training and presentation topics included changes in eligibility for SSI and/or MassHealth, the SSI age-18 redetermination process, retention of MassHealth after turning 18, and MassHealth flexibilities and other benefit adjustments during the COVID-19 Public Health Emergency. Individual technical assistance and consultation were provided by phone or email to family members and/or providers on public benefits for transition-age youth and young adults. The brochure A Bridge to Adult Health Coverage and Financial Benefits was shared with providers and families at trainings and following individual consultations regarding health coverage for youth turning 18 years or older. As a member of the statewide Special Education Advisory Council convened by the Department of Elementary and Secondary Education (DESE), the SSI Public Benefits Training and Policy Specialist advised DESE on transition planning for students to post-secondary education, vocational supports or employment during DESE’s IEP Improvement Project. In mid-FY22 the DCYSHN carried out a redesign of the SSI and Public Benefits Training and Policy Specialist role to align with DCYSHN’s population health focus, in coordination with program succession planning.
MassCARE (Massachusetts Community AIDS Resource Enhancement) is a statewide program that provides access to coordinated, comprehensive, family-centered, culturally and linguistically competent medical care, social service support and peer services for women, infants, children and youth living with HIV and their family members. MassCARE’s transition guidebook Moving on Positively has been available as a resource on the TargetHIV website (the national Ryan White Program’s resource center) for several years. In FY22, one HIV-positive youth/young adult received transition planning services and updated their transition plan; all others had already completed their transition process.
Office of Family Initiatives
MDPH funds Family TIES (Together in Enhancing Support) at the Federation for Children with Special Needs. All Family TIES staff are parents of children and youth with special health needs. Regional Parent Coordinators provide information and referral to families of children and youth with special health needs and their providers. Family TIES has a protocol to flag callers whose children are 14 and older to receive baseline information to support their knowledge of health and health-related transition. In FY22, they provided families with the DCYSHN youth transition and Got Transition websites and transition topic sheets. Families were invited to call back with any questions. Staff provided 36 “What is Family TIES” sessions which included information and resources about health and health-related transition. Attendees included families of children and youth with special health needs, health care providers and administrators, and state agency staff.
Priority: Strengthen the capacity of the health system to promote mental health and emotional well-being.
This priority applies to the CYSHN domain, as well as the Maternal, Child, and Adolescent domains, recognizing that CYSHN and their families may experience mental health challenges in addition to their special health needs. This priority is particularly important in the context of COVID-19. Strategies to address this priority among CYSHN focus on increasing the capacity of MDPH programs and medical providers to identify and address the mental health needs of this population.
Objective 1. By 2025, increase the percent of children with special health needs ages 3-17 who receive mental health treatment or counseling when needed to 85% from baseline (76.9%, NSCH 2017-2018).
According to the NSCH 2020-2021, 82.4% of children with special health needs ages 3-17 received mental health treatment or counseling when needed. This represents an increase from 81.3% in the NSCH 2019-2020.
Pediatric Palliative Care Network (PPCN)
The PPCN’s vision is for every family in Massachusetts living with a child who is medically fragile or dying to have access to pediatric palliative care. Emotional well-being is a cornerstone of the PPCN. PPCN is designed to improve the quality of life of the child and family by meeting the physical, emotional, social and spiritual needs experienced during illness, death and bereavement. In FY22, PPCN contracted with seven licensed hospice programs statewide to provide services not otherwise covered by insurance to 701 children with life-limiting illnesses and their families. PPCN is a payer of last resort; services provided by the program are not covered by insurance or any other source. Services include nursing consultation for symptom management, integrative therapies, psychosocial support, sibling and family support, and spiritual care. In addition to paid staff, volunteers also provided assistance supporting families in a variety of ways, including in-home respite, integrative therapies and sibling support.
PPCN provides integrative therapies such as music, art and other expressive therapies to the child and their siblings. Child life specialists work one-on-one with the child to promote effective coping through play, preparation, education, and self-expression activities. Child life services are offered in such a way to encourage optimum development of the ill child and to help them and their siblings cope with specific challenges associated with intensive medical treatment and hospitalization. Based on family feedback, the integrative therapies and child life services are the most valuable components of the program.
All families also receive a psycho-social assessment upon admission. Families are required to have an in-person visit by a social worker and nurse at least quarterly. This provides an opportunity for care plans to be reassessed and revised if needed and appropriate referrals for additional supports made. PPCN social workers provide ongoing support to all families including referrals to mental health services and assistance with anticipatory grief and loss associated with having a child with a life limiting illness.
During the beginning of the COVID-19 pandemic, PPCN programs experienced challenges to find effective ways to continue to provide palliative care services. Each provider organization adopted some form of telehealth to continue to provide nursing, social work, child life, music therapy and even some integrative therapies such as massage and reiki. Families reported the value of virtual services, such as music therapy, for their child to stay connected and to reduce isolation. PPCN programs also pivoted to add new services such as support groups for parents and siblings that, for many families, were even more effective than in person due to not having to travel or find childcare. Telehealth and in person services remained in place in FY22, at the preference of the family.
As described above, CSL Resource Specialists inquire about mental health as part of their assessment with callers. They provide families with technical assistance and information about services, including behavioral health services such as applied behavior analysis (ABA). In FY22, 11% of all callers had discussed mental health needs; 4% of children whose families called the CSL were referred to mental health services; and 11% were referred to the Department of Developmental Services.
DCYSHN Mental Health Initiatives
The MDPH COVID Community Impact Survey (CCIS) was completed by ~33,000 MA residents in the Fall 2020 and its findings were shared with the public through live webinars and archived on mass.gov between June to November 2021. DCYSHN contributed to the original questions, data analysis, and presentations of CCIS findings that included mental health concerns for both youth with disabilities (21% of all 3,054 youth respondents ages 14-24, estimated total 640) and 786 parents of children and youth with special health needs. In November 2021, the DCYSHN Director presented with the CCIS research team to the MDPH Commissioner and Public Health Council as well as via a live webinar to the public that was recorded and later posted on mass.gov. The CCIS findings highlighted the strong correlation between social determinants of health (e.g. income, housing and social isolation) and its impact on caregivers’ and YYASHN’s mental health. YYASHN experienced the greatest inequities of any group captured in the CCIS when it came to mental health concerns during the pandemic. To promote data to action, the DCYSHN Director promoted the CCIS results widely in FY22 across various state, community, university, and medical partners to stress the need for community involvement in addressing mental health needs of CYSHN and their caregivers.
The DCYSHN Director has served as the MDPH Commissioner’s Designee and Chair of the state’s PANDAS/PANS Advisory Council since the state legislation creating the Council was enacted in January 2021. The Council held its inaugural meeting in early FY22 and submitted its first report to the MA legislature in Fall 2022. Since then, DCYSHN programs have begun to serve the PANDAS/PANS community more frequently and have used this experience to expand its mental health knowledge.
Early Intervention
The MA Early Intervention (EI) Program identifies early social-emotional delays in children 0-3 years old and provides interventions to promote social connectedness. A priority within the State Systemic Improvement Plan (SSIP) and the MA State-Identified Measurable Result (SIMR) is improving the statewide percentage of children with improved positive social-emotional skills, including social relationships. EI and its advisory groups selected this SIMR because it is a measure for which MA is below the national average.
In FY22, the MA SIMR increased from 49.3% in FY21 to 50.06% in FY22. The Early Intervention Division attributes this increase to its infrastructure improvements identified in its FY22 SSIP such as increased staffing to increase parent and community involvement in its advisory board, increased data collection and analysis to support data-based decision-making, increased staffing designed to increase early intervention services provider capacity to use research-based strategies to improve children’s outcomes and family engagement.
Additional activities to improve the system of care for CYSHN
Other activities to improve the system of care for CYSHN that were not specific to the priorities are discussed below and in the Crosscutting domain.
Office of Family Initiatives (OFI)
DCYSHN and OFI continue to address barriers – most notably the availability and awareness of services – that make it challenging for children and youth with special health needs and their families to access community-based services easily. To address these barriers, MDPH funds Family TIES (Together in Enhancing Support) at the Federation for Children with Special Needs. All Family TIES staff are parents of children, youth, and young adults with special health needs. Regional Parent Coordinators provide information and referral to families of children and youth with special health needs and their providers. In FY22, total contacts with the Parent Coordinators increased 7.4% over FY21. Family TIES staff are familiar with local and regional resources and provide training and technical assistance to families as they navigate the system of care. In FY22, Family TIES participated in 44 virtual outreach and/or training opportunities (attended by 366 parents and professionals) and disseminated 653 copies of its resource directory by mail. Family TIES included a summary of the program and the resources and supports available to families in 652 packets of information about Early Intervention (EI) sent to callers.
As the Central Directory/child-find arm of EI, Family TIES staff gave information and technical assistance about EI and how to access community-based EI services to 1,248 families and providers, a 76% increase over FY21. Family TIES also provides information and referral services to families whose children are 3-22 years of age. In FY22 the program had 9,989 phone contacts with families and providers. Although most callers spoke English, over 20 additional languages were reflected. Callers were given information about specific disabilities, support groups, community-based recreational opportunities, after-school options, respite, and funding assistance.
Family TIES also serves as the statewide Parent-to-Parent (P2P) organization in MA and is a member of Parent-to-Parent USA. In FY21 P2P matches were made for 43 families speaking six languages. Family TIES received another 35 requests that it addressed with telephone information, referrals, and technical assistance provided by the P2P Coordinator and Regional Parent Coordinators. At the end of FY21, 182 mentor parents were active and available for a match. “Listen and Learn,” the MA P2P curriculum, is available in Spanish, Portuguese, Vietnamese, Chinese and Haitian Creole. Parents who speak other languages, including various African dialects and ASL, can access individual training to allow them to become support parents.
Approximately 28,000 parents of children currently or previously enrolled (within the past 10 years) in EI received the EI Parent Leadership Project (EIPLP) newsletter, The Parent Perspective, which provides information about the system, community services and events. Each issue includes an article written by a family member who is receiving or previously received EI services. The Parent Perspective is available in hardcopy and electronically. EIPLP maintained a robust social media presence, including Facebook, Twitter, Instagram and YouTube, through which the program continues to offer resources to families about a variety of topics including COVID-19 resources and information.
In FY22 EIPLP collaborated with the EI Division to create four new online trainings for families and providers: Spanish versions of “What is EI?” and “What is EI and How Does it Work?”, “Transition Beyond the IFSP for Parents,” and “NCSEAM for Families.” All were widely publicized and are available on the EIPLP YouTube channel, along with previously created trainings, “What is EI?,” “What is EI and How Does it Work” and “EI Services and Telehealth.”
Massachusetts Technology Assistance Resource Team (MASSTART)
MASSTART supports children with medical complexity by providing consultation to their schools and families on developing a safe plan of care for their specialized health care needs while at school. Children with medical complexity often require medical treatment, medications or observation that need skilled nursing interventions while at school. MASSTART providers assist in developing children’s individualized health care plans and emergency plans, train school staff to understand and meet children’s special needs, conduct educational and training programs, and provide information and referrals to community-based services. By ensuring safety in school for children with complex needs, it supports the educational goal of placement in the least restrictive setting.
In FY22, MDPH contracted with two hospitals and an individual nurse consultant to provide this service. In FY22, MASSTART served 248 children and youth under age 22. MASSTART received 138 new referrals and responded to 93 technical assistance requests. MASSTART also held regular trainings for 388 school nurses/staff and 33 families. MASSTART providers collaborated regularly within their regions by attending multi-agency collaboration meetings and worked closely with the MDPH School Health Unit and Regional School Health Advisors. Families faced unprecedented challenges due to the COVID-19 pandemic as they dealt with the provision of remote school services and transition back to in-person school services for this vulnerable population. School nursing staff shortages also made it difficult for students with medical complexity to return to school. MASSTART provided consultation, outreach, and training via virtual platforms to serve families without interruption.
The MRT reviews requests for children and youth with special health needs aged birth to 22 years for eligibility for placement in a pediatric nursing home or skilled nursing facility (SNF) for long term care (LTC), short term care (STC/respite), and short-term post-hospital care or, in the case of young adults aged 16-22 years, placement in an adult facility for skilled nursing or rehabilitation care. Each program has specific eligibility criteria and requires review by a multidisciplinary team prior to admission. FY22 was again characterized by the current COVID-19 pandemic and was particularly challenging for families. The bed situation in both pediatric skilled nursing facilities in MA was concerning as there were only a few open beds and emergency placements at the pediatric facilities were not possible. In addition, the facilities required a minimum STC length of stay. The national health care staffing shortage affected many families, as well as skilled nursing facilities, as neither were able to fill their nursing staff needs. Therefore, MRT saw an increased number of LTC applications. Due to the limited availability of short-term care beds, the number of STC applications decreased compared to FY21. The two pediatric skilled nursing facilities did not accept any post-hospital admissions.
In FY22, MRT reviewed 57 applications. MRT received 17 LTC referrals (8 in FY21); 39 STC referrals (58 in FY21), including 10 first-time referrals; no referrals for post-hospital care, and one referral of a young adult for skilled nursing and rehabilitation care (4 in FY21). The MRT continues to receive referrals for LTC and STC of more medically complex children with specific care needs such as ventilation. This has been challenging for the pediatric nursing facilities due to the higher level of trained staff needed. Children with ventilators require that a nurse be available on all shifts, so nursing homes have set a limit on the number of children requiring vent care that they can have in the facility at any given time. As a result, they must balance long- and short-term admissions, delaying admissions for some children. Children who are vent-dependent were not able to access short-term care.
With the limited number of beds available at the two pediatric skilled nursing facilities, STC, LTC, and emergency care for families during the pandemic remained a major area of concern. Cross collaboration with multiple agencies, including MassHealth, has been strengthened to address this critical issue.
Community Support Line
In FY22 CSL resumed work on previous plans for outreach and training that had been put on hold in FY21 to respond to families’ needs during the COVID-19 pandemic. Staff participated in or facilitated 42 outreach and/or training events, reaching wat least 1,029 parents and providers. Of the 42 events, four were offered in Spanish, with the rest in English.
CSL continued to raise families’ needs during the COVID-19 pandemic in the following areas: staying up to date on COVID-19 supports and sharing them with families and providers; assisting families with emergency planning; and helping families access basic needs, personal protective equipment, in-home care, nursing, and COVID-19 testing and vaccines. Issues that could not be resolved by CSL staff, and emerging and systemic issues, were elevated to Division leadership and senior management to engage other relevant state agencies. Many of these issues related to challenges faced by immigrant populations, including access to some health care services, technology, durable medical equipment and language access.
Interagency Collaborations for CYSHN
DCYSHN and OFI partnered with the Department of Elementary and Secondary Education, Department of Early Education and Care, and several other state agencies to develop a Family Engagement Framework (FEF) published in June 2020 that adopts shared principles and practices in a collective impact approach to family engagement across state systems. In FY22, the agencies continued to collaborate on writing FEF training modules. Ultimately 10 state agencies endorsed its usage, thus sharing common terminology and practices across agencies and with families. See the Crosscutting domain for more information.
Several DCYSHN staff are members of the MA Lifespan Respite Coalition led by UMass Chan Medical School. They contributed to the planning of an upcoming Caregiver Respite Line hosted by MassOptions and were interviewed for a training video for case managers and others who may refer caregivers to the line based on their lived and professional experience on this topic.
The Care Coordination Program continued to convene quarterly regional networking and collaboration meetings. The purpose of these meetings was to foster a collaborative approach to the care of children in that region who receive services from multiple agencies.
DCYSHN continued to work with MassHealth and the MDPH Office of Preparedness and Emergency Management (OPEM) to establish policies and practices related to emergency care planning. FY22 activities included hosting dedicated web pages and related resources and including the needs of CYSHN and their families during natural disasters and pandemics in the MDPH promotional campaign for the annual Emergency Preparedness Awareness Month.
See also the MCH Emergency Planning and Preparedness for information about DCYSHN’s role and interagency collaborations related to emergency planning.
[1] Cooley WC, Sagerman PJ; American Academy of Pediatrics; American Academy of Family Physicians; American College of Physicians; Transitions Clinical Report Authoring Group. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics. 2011; 128:182-200.
[2] Got Transition, The Six Core Elements of Health Care Transition, available at www.gottransition.org
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