Massachusetts had two CYSHN priorities for the reporting cycle ending in 2020:
- Increase connections to Medical Home for all children, including those with special health needs.
- Support effective health-related transition to adulthood for adolescents with special health needs.
There are two priorities for the cycle ending in 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.
Because this is a transition year following the needs assessment, this report describes FY20 activities related to both sets of priorities.
Priority (2015-2020): Increase connections to Medical Home for all children, including those with special health needs.
Objective 1 (NPM 11): By 2020, increase the percent of CYSHCN having a medical home from 49.1% (NSCH 2016) to 53.9% by 2020.
The National Survey of Children’s Health (NSCH) combined 2018-2019 data indicate that 46.1% of CYSHN aged birth to 17 years in MA receive coordinated, ongoing, comprehensive care within a medical home. Although this is above the national average, it represents a non-statistically significant decrease in MA from 51.8% in 2016-2017. MA performs well on the first three medical home criteria (personal doctor, source of care, family-centered care) but the percentage of children receiving effective care coordination when needed is 55.8%, bringing down the overall medical home measure. In addition, although sample sizes for state-level estimates are too small to examine inequities by income, type of insurance, or race/ethnicity, national estimates suggest that children whose families are at or above 400% FPL, privately insured children, and White non-Hispanic children are more likely to receive care in a medical home than lower income families, publicly insured children, and children of color, respectively.
DCYSHN seeks to eliminate inequities in access to a medical home and address identified challenges by finding opportunities for family engagement and making information and training available through multiple modalities to meet family circumstances. DCYSHN is committed to supporting families to participate actively as partners in decision-making in the care of their children and in systems improvement activities that affect all CYSHN and their families. Challenges for families include lack of awareness of opportunities to participate and engage, lack of skills and confidence, cultural reluctance to take on more visible roles, and specific family issues related to their children’s health and medical care.
The EI Program continued implementing the “close the referral loop” protocol between medical home providers and EI following a referral. Ensuring that pediatricians who refer children to EI are informed about the outcome of their referrals targets the principle of a medical home that care is coordinated among multiple providers. Since FY18, the MA Part C program has required all EI programs to “close the loop” for referrals from medical home/primary care providers. With family consent, a letter is sent by the EI program to the referring medical provider within 45 days of receipt of the referral to inform the providers about whether an EI evaluation was completed, whether the child was found eligible, and if so, whether an EI Individual Family Service Plan (IFSP) was developed or scheduled. Through FY19, compliance with the requirement was tracked in the state EI data system. However, when EI migrated to a new data system in November 2019, the data needed to track this measure were not included due to fiscal constraints and other competing priorities. In FY19, 13,502 children were referred to EI by their medical home/primary care provider. Of these referrals, 9,652 children had an IFSP developed and “close the loop” information was sent for 7,978 children (82.7%).
Staff from Family TIES, a project of the Federation for Children with Special Needs funded by MDPH, continued their work to raise awareness of the medical home among families by including information in two key trainings: Let’s Get Organized and What is Family TIES? These trainings were presented 45 times across the state to families from diverse cultural and linguistic communities. Thirty-seven What is Family TIES? sessions were offered to help families and providers better understand the medical home concept of care. Over 1,000 copies of the DCYSHN Medical Home for Families fact sheet, available in English, Spanish, Portuguese, Vietnamese, Haitian Creole, and Chinese, were distributed at the trainings and to callers to Family TIES.
In June 2019, OFI launched a modified version of the Family Leadership Training Institute (FLTI), a leadership skills development program offered by DCYSHN in previous years. The new version, Finding Your Footing: Using Your Family’s Experience to Make Systems Change, is a six-session training opportunity for families whose children were about to or had recently graduated from EI. In FY20, several FLTI graduates were trained as RFR reviewers in preparation for Specialty Services and home visiting procurements expected in FY21.
Community Support Line
The DCYSHN toll-free statewide Community Support Line (CSL) provides information, technical assistance and resources for families with CYSHN and providers serving these families. Staff guide, direct, educate and inform families and providers about culturally and linguistically competent community-based, state and federal programs as well as other services and supports. Among callers in FY20, 27% identified a need for care coordination services as a reason for their call; CSL staff referred 135 families to the Care Coordination Program.
Care Coordination
Care Coordinators help families obtain services, facilitate linkages to community-based resources, and provide consultation to parents, educators and providers to promote continuity of care. In FY20, there were 863 Care Coordination clients, including 57 infants. The Care Coordination Program provided education and materials on medical home to all newly enrolled families. In addition, there were 342 technical assistance phone calls; 64 were from family members, most of whom were screened for Medicaid eligibility.
MassCARE
MassCARE (funded under the Ryan White Program Part D) serves women, infants, children and youth living with HIV and affected family members and is located at three federally-qualified community health centers. MassCARE requires an “HIV medical home” approach and quality assessment at all clinical sites. Through its Project CAATCH (Consumer Access and Adherence to Care for HIV) initiative, an intensive intervention is provided to clients living with HIV who are at risk of falling out of care, which improves their retention in care and overall health status.
During FY20, nine HIV-infected children and youth were served in an HIV medical home. A patient-centered medical home for people living with HIV supports engagement and retention in care. All MassCARE sites are National Committee for Quality Assurance (NCQA) certified medical homes. The MassCARE Coordinating Committee included two family members who were paid peers. In FY20, 37 adults and adolescents attended health education events and group activities and 58 parents attended training through consumer meetings and activities.
Priority (2015-2025): 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, SSI and Public Benefits Training and Policy, MassCARE, 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 and young adults with special health needs (YSHN). NSCH combined 2018-2019 data indicate that 37.2% of YSHN aged 12 through 17 in Massachusetts received the services necessary to make transitions adult health care. While the 2018-2019 data for this NPM must be interpreted with caution due to the small sample size, it still exceeds the 2016-2017 percentage even taking into consideration the large confidence interval. As a result, MDPH increased its 2025 objective and annual projections and will continue to monitor NSCH data.
For 2025, the ESM for NPM 12 will continue to be 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.
Care Coordination
In FY20 the program sent letters to all families receiving Care Coordination services who have children aged 14 years and older and to the children’s primary care provider to notify them of the availability of assistance and support from the program during these transition planning years. Care Coordinators provided families with tools and information designed to promote health transition readiness and assist with the health care transition process. Care Coordinators provided materials, education, and transition-related services to 133 families on 172 occasions. 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 purposely 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 the pediatric to adult health care.
DCYSHN staff members present health-related transition information at conferences and other venues attended by youth, families, and providers. Presentations delivered by the DCYSHN Director in FY20 included: “Transition to adult care for medically complex youth & young adults: The Public Health Perspective” at The Arc of Massachusetts 2019 Transition Conference; “Title V & the Role of Health Care Transition for Youth with Special Health Care Needs” for clinical and administrative staff and trainees in the Boston Children’s Hospital Divisions of Adolescent Medicine and Endocrinology; and the Welcome Remarks, “Building a Roadmap for Change: Improving Transitions to Adulthood,” at the annual Harvard Medical School CME conference on Young Adults with Chronic Conditions: Optimizing Treatment and Transition from Pediatric to Adult Care.
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 Transition Summit (NDD Summit) in collaboration with the Boston Children’s Hospital-Brigham and Women’s Hospital BRIDGES Program held in November 2020; and the MA Advocates for Children Transition Work Group, which produced an updated Transition Planning Form for Individualized Education Programs that includes health transition. Among other topics, the NDD Summit Steering Committee work addressed the major challenge of the lack of adult practitioners prepared to provide healthcare to transitioning youth and young adults with special health needs.
In addition, DCYSHN convened a small group of Division staff who met several times to discuss incorporating the Charting the Life Course Framework, a person-centered planning tool, into DCYSHN's work. To assist with planning and monitoring Health Transition activities for the State Action Plan, a graduate student intern from Harvard University School of Public Health developed logic models and evaluation plans for each strategy in the plan as well as an overall work plan for Year One to guide the implementation team for this Title V priority.
Community Support Line (CSL)
The CSL fields phone calls daily with questions about services and resources for children and youth with special health needs. Of the total callers who contacted the CSL in FY20, 25% received technical assistance on transition planning, including health care transition. Resource Specialists also conduct trainings for families and providers. In FY20, they held a session in Spanish that included transition as part of the Federation for Children with Special Needs’ Programa de Liderazgo para Padres Latinos (Latino Parent Leadership Program). Nine providers and 27 parents attended. They also held trainings for Behavioral Health Network Systems of Care providers in the central and western regions of the state totaling 19 attendees.
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 work in MDPH offices statewide and 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 FY20, they provided 119 families the DCYSHN youth transition and Got Transition websites and transition topic sheets. Families were invited to call back with any questions. Staff provided 37 “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
SSI and Public Benefits Training and Policy
Public benefits trainings were presented to health care providers who work with older youth transitioning into the adult health care service system. Information included changes in eligibility for SSI and/or MassHealth and the steps to ensure retention of MassHealth after turning 18. Individual technical assistance was provided by phone or e-mail to family members and/or providers on public benefits changes for transition-age youth. The brochure A Bridge to Adult Health Coverage and Financial Benefits was shared with providers and families of transition age youth at public benefits trainings and provided as follow up to telephone/email consultations regarding health coverage for youth turning 18 years or older. As a member of the Statewide Special Education Advisory Panel, the SSI Public Benefits Training and Policy Specialist participated in robust discussions among multiple state agencies and family members of transition-age youth regarding transition planning for students to post-secondary education or work.
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 FY20, two HIV-positive youth transitioned to the adult health care system and five others received transition planning services. MDPH expects the majority of perinatally infected young adults will have fully transitioned in the next two to three years. Newly enrolled youth are primarily older, behaviorally affected, and are linked to adult medial services while continuing to receive social service supports from the program.
Priority (2020-2025): 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 are to increase the capacity of MDPH programs and medical providers to identify and address the mental health needs of this population and to partner with the Haitian and Asian communities to better understand cultural differences, increase awareness of services, and reduce stigma.
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 42% from baseline (39.1%, NSCH 2017-2018).
According to the NSCH 2018-2019, 35.2% of children with special health needs ages 3-17 received mental health treatment or counseling when needed. This represents a slight decrease from 2017-2018, though it is not statistically significant. Although the sample size is small, MDPH hopes to see significant positive changes over five years.
Catastrophic Children in Illness Relief Fund
In FY19 and FY20, DCYSHN engaged with community partners in exploring the mental health needs of single Haitian mothers of children with complex medical needs. One of the CICRF staff was born in Haiti and participated in these discussions. In FY20, she continued to build relationships with referral sources serving the Haitian community and has heard first-hand how the pandemic has resulted in reduced income for many parents increasing their stress and anxiety. The number of applications to CICRF for financial assistance is expected to increase from Haitian-Creole speaking parents in FY21 as more parents learn about the Fund through word of mouth from other parents served. Working with these families in their own language has built trust and expanded awareness of cultural differences in seeking support and barriers in receiving treatment for their children with medical complexity.
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, and spiritual needs experienced during the course of illness, death and bereavement. In FY20, PPCN contracted with eight licensed hospice programs statewide to provide services not otherwise covered by insurance to 628 children with life-limiting illnesses and support services to 358 siblings. 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, complementary therapies, psychosocial support, sibling and parental support, and spiritual care. Seventy-one volunteers provided over 2,600 hours of volunteer assistance, supporting families in a variety of ways, including in-home respite, complementary 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 assist 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.
CSL Resource Specialists include questions about mental health as part of their assessment with callers to the line. They provide families with technical assistance and information about services, including behavioral health services such as ABA (applied behavior analysis). In FY20, 15% of children whose families called the CSL were referred to mental health services including ABA.
MassCARE
Early Intervention
The MA Early Intervention (EI) Program universally screens and 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 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 FY20, the MA SIMR declined by 5.7% compared to FY19. MDPH attributes this to the changes in data accuracy and changes in reporting requirements during the COVID-19 pandemic. Baseline data were collected prior to the workforce being trained to administer the Battelle Developmental Inventory, 2nd Edition (BDI-2) with fidelity, so scores may have been inflated at entry and at exit. If more accurate, they would show less growth over the year because of the initial inaccurate measure. In addition, a limited pool of data is available for review as fidelity data have not been collected since March 2020 when the requirement to administer the BDI-2 was temporarily removed during the public health emergency.
In addition to SIMR data, MA evaluated the effectiveness of professional development to support positive social-emotional development including:
- Evaluation of the impact of the PIWI (Parents Interacting With Infants) Institute: PIWI is an evidence-based practice to promote social-emotional development. Preliminary data from pre and post self-assessment checklists suggest that the PIWI Institute provides valuable experience and opportunities to enhance professional knowledge, skills and competencies for an increasing number of EI practitioners with various backgrounds and experiences, while also enhancing their professional skills in a multidisciplinary training environment.
- Fidelity of BDI-2 Administration: Prior to March 2020, the MDPH EI Division required all EI service programs to submit an audiovisual recording of a BDI-2 administration. Review of these recordings indicate that an additional round of fidelity evaluation needs to be completed for all local programs.
- Individualized Family Service Plans (IFSP) Outcomes Evaluation Inter-rater Reliability: The EI Division conducted an evaluation on IFSP outcomes developed by EI service programs using criteria developed by the Early Childhood Technical Assistance (ECTA) Center. There were five individuals engaged in the rating process and there were inconsistencies identified. Data collected from raters suggest that more support to attain inter-rater reliability needs to be done before additional data collection can occur.
Stakeholders, including families receiving EI services and EI service providers, were engaged via webinars and small-group meetings to identify the impact of COVID-19 on existing policies and procedures impacting the SSIP implementation and evaluation activities.
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. As a strategy to address these barriers, MDPH funds Family TIES (Together in Enhancing Support) at the Federation for Children with Special Needs (FCSN). All Family TIES staff are parents of children and youth with special health needs. Regional Parent Coordinators work in MDPH offices statewide and provide information and referral to families of children and youth with special health needs and their providers. They are familiar with local and regional resources and provide training and technical assistance to families as they navigate the system of care. In FY20, Family TIES participated in 63 outreach and/or training opportunities at the community level, which were attended by over 1,393 families and professionals. Approximately 20% of these participants identified as Black, Indigenous, and People of Color from diverse cultural and linguistic backgrounds. Family TIES disseminated 968 copies of its resource directory as well as 1,858 Family TIES and 507 DCYSHN brochures in multiple languages. Due to the COVID-19 pandemic, in-person skill building, outreach and training events were stopped in March 2020 which resulted in far fewer materials distributed than in the past.
As the Central Directory/child-find arm of EI, Family TIES staff gave information and technical assistance about EI and how to access the community-based EI services to 695 families and providers. Family TIES also provides information and referral services to families whose children are 3-22 of age. In FY20 the program had 3,886 phone contacts with families and providers. Although the largest percentage of callers spoke English, over 18 additional languages were reflected. Callers were given information about specific disabilities, support groups, community-based recreational opportunities, after-school options, respite and funding assistance. Between March 14 and June 30 there were 847 contacts from families and providers looking for services and supports and specific resource needs related to COVID-19.
Family TIES also serves as the statewide Parent-to-Parent (P2P) organization in MA and is a member of Parent-to-Parent USA. In FY20 P2P matches were made for 52 families speaking eight languages. Another 63 requests were received that were addressed with telephone information and referrals and technical assistance provided by the Parent-to-Parent Coordinator and Regional Parent Coordinators. At the end of FY20 a pool of 224 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 languages other than English, including various African dialects and ASL can access individual training to allow them to become support parents.
Approximately 27,700 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. The Parent Perspective is available in hardcopy and electronically. The EIPLP website is also used by parents and community-based EI and health care professionals to access information. EIPLP maintains a very robust social media presence which has been especially helpful during the COVID-19 emergency. The project’s Facebook page had 1,090 likes by the end of FY20, indicating information and resources were widely disseminated.
As part of the response to providing EI services during the pandemic, EIPLP collaborated with the Division of EI and local EI providers to develop and disseminate a letter to families enrolled in EI to explain and offer support around telehealth services. EIPLP followed up with a survey for families assessing their use of telehealth services and challenges and barriers to service provision.
Massachusetts Technology Assistance Resource Team (MASSTART)
MASSTART supports children with complex medical conditions by providing consultation to schools and families on developing a safe plan of care for children’s specialized health care needs while at school. Children with complex health conditions often require some kind of medical treatment, medication or observation that requires skilled nursing intervention 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 FY20, MDPH contracted with two hospitals to provide this service. In FY20, MASSTART served 219 children and youth under age 22. MASSTART received 98 new referrals and responded to 561 technical assistance calls. MASSTART also held regular trainings for school nurses and school staff. MASSTART providers collaborated regularly within their regions by attending multi-agency collaboration meetings and worked closely with MDPH School Health staff and Regional School Health Advisors. Due to school closures and a stay-at-home order from COVID-19, families and the program faced unprecedented challenges. MASSTART was able to provide consultation, outreach, and training via virtual platforms and to serve families without interruption.
Medical Review Team (MRT)
The MRT reviews requests for children and youth with special health needs aged birth to 22 years for placement in a pediatric nursing home or skilled nursing facility for long term care (LTC), short term care (STC/respite), 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 including medical professionals prior to admission. FY20 was particularly challenging for the program and for the families involved due to COVID-19. Both pediatric skilled nursing facilities in MA were closed for admissions for three months from March to June 2020 to protect their residents. Concerns about contracting the virus also led to a decrease in STC applications during that time.
In FY20, the MRT received seven LTC referrals (five of which were approved); 71 STC referrals (69 of which were approved, while one was denied and one was deferred), including 18 first-time referrals; four referrals and one extension for post-hospital care (all of which were approved) and two referrals of young adults for skilled nursing or rehabilitation care (all of which were approved). The MRT continues to receive referrals for LTC and STC of more medically complex children with specific care needs such as ventilators. This has been challenging for the pediatric nursing homes 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 a limit on the number of children requiring vent care that they can have in the home at any given time. As a result, they must balance long- and short-term admissions, delaying admissions for some children.
With the closure of the two pediatric skilled nursing facilities, emergency care for families during the pandemic became a major area of concern. MRT staff participated in a workgroup convened by the DCYSHN to work with the MA Office of the Child Health Advocate and MassHealth to identify emergency care options for children and youth with complex medical conditions if the parents/guardians became ill and unable to care for their children (described further below).
Interagency Collaborations for CYSHN
The DCYSHN Director is a member of the Children with Medical Complexity (CMC) CoIIN at Boston Children’s Hospital through Project ENGAGE, designed to improve the quality of orthopedic surgical practice and outcomes for CMC by fully engaging their families and providers throughout the process of preplanning, surgery and discharge. She and other members of the DCYSHN team are also members of the MA Lifespan Respite Coalition led by UMass Medical School. She meets regularly with staff from the Office of Child, Youth & Family Policy and Programs at MassHealth on issues related to children and youth with special health needs.
In early FY20, the DCYSHN team gave several presentations to community partners. Two examples include a panel presentation to the Boston Children’s Hospital Rainbow Clinic and Complex Care Services staff and a presentation on racial equity and family engagement to fellows at the Institute for Community Inclusion/Boston Children’s Hospital/UMass Boston LEND program.
From March to June 2020, COVID-19 influenced many new collaborations in response to the needs of children with special health needs and their families. The DCYSHN Director provided two online community advisory presentations: No Small Victories Video Blog in April and the Arc of MA’s COVID-19 Update in May. DCYSHN worked with the MA Office of the Child Advocate, MassHealth, and the Pappas Rehabilitation Center to explore alternative care options for families of children with medical complexity whose primary caregiver becomes ill and incapacitated due to COVID-19. DCYSHN developed the Emergency Care Planning (ECP) for Children & Youth with Special Health Care Needs during COVID 19 and Beyond web pages on mass.gov with COVID-19 resources and other general emergency resources for families of children and youth with special health care needs. This webpage also hosts the Preparing for Caring during COVID-19 webinar and emergency planning materials, offered to families as a live event and delivered by two community family leaders and experts in safety and person centered planning, both parents of children with disabilities. The DCYSHN Care Coordination Program provided families of children with medical complexity who experienced food insecurity, housing or respite needs due to COVID-19 with emergency support funding and personal protective equipment (PPE). The Family TIES program delivered PPE, groceries and other needed items directly to family homes. All DCYSHN programs made major adjustments to provide services to families during the pandemic.
[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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