Department of Public Health
Chapter 171 Report and Annual
Individual and Family Support Plan
Fiscal Year 2021
February 2021
 Massachusetts Department of Public Health
Annual Family Support Plan
Fiscal Year 2021 (FY21)
Background
The Mission of the Massachusetts Department of Public Health (DPH) is to promote the health and
well-being of all residents of the Commonwealth by ensuring access to high-quality public health and
healthcare services, and by focusing on prevention, wellness, and health equity for all people.
DPH programs, services, and educational initiatives are designed to address social determinants of
health, defined as “the conditions in which people are born, grow, live, work, and age, which
contribute to health inequities,” and to recognize and strive to eliminate health disparities among
populations in Massachusetts wherever they may exist. DPH works to prevent disease and disability
and reduce the impact on individuals and society of preventable health conditions and secondary
effects.
Within DPH, the Bureau of Family Health and Nutrition (BFHN) is home to many programs serving
children and youth and their families, including the Massachusetts Maternal & Child Health (MCH)
Title V Program. Title V is an 85-year-old program enacted as part of the Social Security Act of
1935. Title V works to ensure the health of the nation’s mothers, women, children, and families. This
includes children and youth with disabilities and chronic illness and their families who are served by
the Division for Children & Youth with Special Health Needs (DCYSHN). The DCYSHN was given
the responsibility for developing the DPH Family Support Plan as mandated by Chapter 171 of the
Acts of 2002: An Act Providing Support to Individuals with Disabilities and Their Families.
Since the passage of Chapter 171, BFHN has examined existing programs annually to assess their
level of meaningful family involvement. This is done by soliciting family/consumer input, which is
used to increase the degree to which programs and services can be more responsive and family-
directed and provide more flexible supports. This ongoing work is entirely consistent with the Title V
philosophy of meaningful and sustained family engagement in all aspects of policy development and
program planning.
Overview of Family Support
DPH has a long-standing commitment to effective, collaborative partnerships with families and works
to ensure that programming is responsive to needs identified by families and consumers. To ensure
that this commitment is realized, DPH employs a broad definition and multi-faceted approach to
family support, starting from a commitment to family-centered care, a core component of maternal
and child health, which is defined by the federal Health Resources and Services Administration
(HRSA) Maternal and Child Health Bureau (MCHB) as:
"Family-Centered Care assures the health and well-being of children and
their families through a respectful family-professional partnership. It
honors the strengths, cultures, traditions and expertise that everyone brings to this
relationship. Family-Centered Care is the standard of practice which results in high quality
services."
In addition, DPH provides a variety of flexible family-identified supports, ranging from a small
amount of funding that individual families can use as needed, to skill-building opportunities that
assist families to become confident, well informed, active partners in their own children's health, and
in policy development and systems enhancement. DPH programs provide information and referral to
resources to assist families in the care of their children with special health needs and offer
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opportunities for family-to-family support and networking, recreational activities and assistance with
accessing community resources.
At DPH, family support activities are primarily housed within BFHN’s Divisions of Early
Intervention (EI) and Children & Youth with Special Health Needs (DCYSHN) and are overseen by
the Director of the Office of Family Initiatives (OFI), which is a senior management position within
BFHN. The Director’s responsibilities include:
▪ Ensuring that all staff are aware of, receive information about, and know how to work in
partnership with families,
▪ Ensuring that all Bureau initiatives include families/consumers in planning and monitoring
activities,
▪ Developing new and ongoing opportunities for family involvement,
▪ Providing training, mentoring, financial and other supports to families partnering in planning,
policy making, and program implementation,
▪ Identifying and sharing emerging issues for CYSHN and their families,
▪ Representing BFHN and its commitment to family-centered services in interagency initiatives,
▪ Representing BFHN and its commitment to family-centered services with other organizations on
the state and national level, and
▪ Providing the “family voice,” both personally and via inclusion of other family members and
family organizations, in Bureau and Department activities.
In FY20, both divisions worked to expand engagement and partnerships with families and to ensure
that all staff understand and implement the definitions and commitment. We continue to be members
of a cross-sector initiative of 11 state agencies and a coalition of more than 500 community
stakeholders to finalize and disseminate the Prenatal through Young Adulthood Family Engagement
Framework, a roadmap for family engagement for the state.
DCYSHN has developed and vetted a new definition of Family Engagement as one of its critical core
values that will guide work going forward:
Family Engagement is the intentional practice of partnering with families to support positive
outcomes in their lives and to improve and enhance our work by actively developing ways for
families to share their lived experience and expertise.
Family Engagement is based on the belief in the importance of family involvement and
leadership at the individual, community and systems level and is infused with the DCYSHN
core values.
Process for obtaining "substantial consultation" from families regarding flexible support needs
Substantial consultation to inform the DPH family support plan for FY21 has been changed by the
onset of the COVID-19 pandemic. Our primary information gathering tool, a family needs
questionnaire, was launched at the annual Federation for Children with Special Needs’ Visions of
Community (VOC) conference on February 29, 2020, which was attended by more than 900 families.
The questionnaire is available in English, Spanish, and Portuguese and can be completed in hard copy
or online. Typically, we follow up the dissemination at VOC by distributing the questionnaire through
DCYSHN programs, community partners, health care providers, CHCs, other partners, and various
social media platforms. In FY20, however, the Governor’s March 10, 2020 State of Emergency and
“stay at home” guidance resulted in suspension of survey distribution. Instead, we decided to utilize
input that came in through the division’s two toll-free call lines and other direct service programs. In
addition, as a program funded by the MCH Block Grant, the Title V program is mandated to conduct
a comprehensive, state-wide needs assessment every five years. BFHN conducted a needs assessment
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in FY20 and gathered a significant amount of information through surveys and focus groups prior to
the onset of COVID-19. OFI staff, who are all parents of CYSHN and connect with families on the
local level, advised about the unmet needs and emerging issues they heard from families. Information
from these sources informs the Chapter 171report.
Other DCYSHN program staff include questions about services and supports in their regular contacts
with families and in their individual program evaluation efforts. Emphasis is placed on obtaining
substantial consultation that reflects the geographic, linguistic, ethnic, cultural, and socio-economic
diversity of the state.
We ask and listen for information about unmet and under-met health related needs. This year, we
have learned a great deal about how fragile the safety net can be in crisis situations.
A key theme that emerges annually from substantial consultation with families whose children have
special health needs centers around the need for access to the most current information about
resources, services, and supports available to them. To respond to this in FY21, DCYSHN will work
with the Federation for Children with Special Needs to expand the capacity of the Family TIES
Directory of Resources for Families of Children and Youth with Special Needs. Families remind the
DCYSHN that we should be sharing this information with them, with their health care providers, and
through the schools their children attend. In addition, families let us know about the need for more
respite and nursing care and assistance with school related services. In instances where these needs
fall outside the purview of the DCYSHN, case information is shared with sister agencies.
In addition to increasing access to resources in response to the COVID-19 public health emergency
and on the increased needs expressed by many families, a central focus of the FY21 Chapter 171 plan
will be on supporting emergency care planning for families who have children and youth with special
health needs.
Focus Areas
In FY21, DPH will focus Chapter 171 activities in three primary areas:
1. Ensuring that families who have contact with DCYSHN have an Emergency Care Plan that
includes identifying alternate caregivers in the event that parents become ill. This topic will
be included in all division program intakes. A web page of resources to support those families
who either do not have a plan or need to update their plans will be developed and promoted.
2. Cross-bureau and cross-sector work to implement the Prenatal through Young Adulthood
Family Engagement Framework with a strong focus on the intersection of family
engagement, COVID-19, and racial equity. This will include on-going participation in the
state planning team and internal coalition to host virtual listening tours and affinity groups so
that all stakeholders can have input into what is needed for successful implementation.
3. Incorporating the “Charting the LifeCourse Framework” into transition activities for youth
with special health needs, their families, and providers. The framework is a person-centered
planning tool created to help individuals and families of all abilities and all ages develop a
vision for a good life, think about what they need to know and do, identify how to find or
develop supports, and discover what it takes to live the lives they want to live. The
framework champions transformational change through knowledge exchange, capacity
building, and collaborative engagement at the individual, family, professional and policy
leader level. The tool includes healthy living and COVID-19 elements in addition to many
others.
Family Empowerment and Family Leadership Development Activities
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Current and On-going Activities:
At DPH, family empowerment and family leadership activities are integrated and are offered in the
following ways:
• Participation in policy development, program planning, implementation, and evaluation coupled
with skill-building opportunities that assist families and consumers to confidently and effectively
participate.
• Participation in the MCH Block Grant process, from needs assessment to priority setting, to
implementation and evaluation.
• The Early Intervention Parent Leadership Project (EIPLP), which is a parent-designed and staffed
project that reaches families whose children are enrolled in EI, offering skill-building for
leadership and lifelong advocacy skills development. Through the EIPLP, DPH offers a variety of
opportunities that assist families to take on roles across the early childhood and special health
needs systems of care. For example, in FY20, EIPLP provided a virtual skill-building session to
prepare family members to take part of RFR reviews. Twenty parents participated and received
stipends for their time. Parents are encouraged and supported to partner with their own EI
programs, at regional early childhood events, on the state level as advisors to the DPH, as
members of the federally mandated Interagency Coordinating Council (ICC), and nationally to
share information about Massachusetts and to learn and bring home information from other states
about ways that families can help define and improve services systems. The EIPLP Family
Engagement & Collaboration Coordinator has identified and supports a broad cohort of
culturally, racially, and linguistically diverse families to participate in EI and DCYSHN activities.
In FY20, several diverse families were recruited to take part in ICC committee work and be part
of robust racial equity work.
• Family TIES,(Together in Enhancing Support) a program of the Federation for Children with
Special Needs funded by DPH, is the statewide information and referral network for families of
CYSHCN and their providers. Family TIES staff, all of whom are parents of children with special
health needs, are located in each of the DPH regional offices, which gives them familiarity with
local resources. Family TIES also serves as the Massachusetts Parent-to-Parent program, an
affiliate of P2P USA, connecting families with similar life circumstances, and as the Early
Intervention central directory. Families who access services from Family TIES are offered
opportunities to become advisors to DPH and to take on roles within DPH programs and other
public policy venues. Training, mentoring, and financial support are available to these families.
• In FY19/20, the Office of Family Initiatives and the EIPLP launched a new leadership skill
building activity, Finding Your Footing: Using Your Family’s Experience to Improve Systems.
This opportunity, which is available to parents and caregivers of children about to transition or
recently transitioned from Early Intervention, attracted broad interest. Fifteen parents participated
in this pilot. In FY20 we were able to conduct four of the six planned meetings bringing families
together on a bi-monthly basis to continue learning, building community, and receiving access to
opportunities. As of March 15, 2020, the in-person meetings were suspended.
• DCYSHN Care Coordinators, DPH Public Benefits Specialist, the Community Support Line, and
Family TIES staff guide families through service systems and support them to learn about public
benefits and programs, eligibility requirements and “who to call,” as they navigate systems of
care. During the COVID-19 emergency the majority of calls received by all programs had to do
with issues such as food scarcity, care for children at home while parents worked and
transportation assistance.
• Collaboration with other family organizations such as the Federation for Children with Special
Needs, Mass Family-to-Family Health Information Center, PPAL, and Mass Families Organizing
for Change to share emerging issues, training, and skill-building opportunities.
Families are regularly surveyed about support and training needs and best uses of flexible funds
through the Office of Family Initiatives, Community Support Line, Care Coordination, and Regional
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Consultation Programs. These programs also provide training and skill-building opportunities for
families to grow their knowledge of systems of care and their leadership and advocacy skills.
New Initiatives:
• Expand work to address racial justice, inequities and disparities by offering training and skill
building for all staff. These include Town Hall meetings, brown bag lunches, affinity groups and
dissemination of the Racial Equity Data Road Map, understanding that increased staff knowledge
and awareness will lead to improved service delivery and support for families.
• Lead the efforts to increase engagement with diverse families based on what these families and
communities say about challenges and ways to address them.
• Explore additional ways to engage with families and provide skill building and supports,
including a version of Finding Your Footing and/or the Family Leadership Training Institute
virtually.
• Strengthen existing and identify new partnerships to support families of CYSHN during the
current pandemic and to be prepared for any new crises.
• Collaborate with DPH Office of Preparedness and Emergency Management.
Family Support Resources and Funding
Current and On-Going Activities:
Family support activities continue to focus on skill building and leadership development at the
community level, production and dissemination of informational materials, assistance in forming
local support groups, and expansion of the statewide Parent-to-Parent program. This program trains
volunteer parents to offer telephone support to families with similar life experiences. In FY20, 52
Parent-to Parent matches were completed. “Listen and Learn,” the training program for mentor
parents, is available in Chinese, Vietnamese, Haitian Creole, Portuguese, and Spanish. Currently,
there are 228 active trained support parents with the capacity to offer support in eight languages.
DCYSHN direct service staff provides information about and referral to resources, public benefits,
and navigating the health care system. Materials developed in response to previous substantial
consultation from the Chapter 171 Plan, including a brochure called “A Bridge to Adult Health
Coverage and Financial Benefits,” medical home fact sheets for families available in six languages,
and a Guide to Using Health Information on the Internet continue to be distributed. DCYSHN
maintains a website to supp