Family partnership is defined in the MCH Block Grant as “the intentional practice of working with families for the ultimate goal of positive outcomes in all areas through the life course. Family engagement reflects a belief in the value of the family leadership at all levels from an individual, community and policy level.”[1]

MCH

Two years ago, all MCH staff and respective programs worked with New Hampshire Family Voices (NHFV) on a technical assistance (TA) request to increase family partnership and engagement into daily section functioning. The recommendations that were developed at the conclusion of that TA served as its cornerstone and reviewed regularly.

• Ongoing staff readiness and professional development for family engagement simultaneous to an increase of families within the work
• Goals and objectives dedicated to family engagement within every MCH program’s workplan. This is to be able to chart success and measure progress
• The inclusion of family partnership and engagement in MCH’s contracts, as feasible and appropriate 
• Ongoing capitalization of opportunities for family engagement, such as the inclusion of focus groups
• Establishment of expectations for family members currently sitting on committees. Is the particular committee focused on oversight, advice giving, operations or policies? What is the role of a family member? Is it documented?

Professional Development:

Professional development, for the most part, has taken a virtual and online format since the COVID pandemic began in March of 2020. This has actually increased the number of staff able to participate, particularly in the realm of family engagement, which has recently been a popular subject matter across MCH programming. In the past year, MCH staff have attended trainings and conferences such as those entitled Engaging Parents, Authentic Youth Engagement and Help Me Grow-Concordant Care.

Staff training in family partnerships often takes the form of working with a federally funded resource center. For example, for the Home Visiting Program and specifically MIECHV, the Technical Assistance Resource Center (TARC) provides support on obtaining family voice, how best to support families, and acknowledging addressing and moving past barriers. The TARC helps MCH staff with doing this for every MIECHV performance measure, such as increasing the number of babies who receive breastmilk at six months of age, completing depression screening and referral within three months of birth, and babies being put to sleep in a safe sleep environment. The new Continuous Quality Improvement Coordinator with Home Visiting sits on the TARC’s national advisory board.

It is not only important for MCH staff, but also for the families and contractors that are partners in the work. Several programs, particularly Early Hearing and Detection (EHDI), have consistently sponsored families to attend the annual EHDI conference.  

Advisory committees and program staffing

MCH is most likely to involve families within their programmatic advisory committees including the ones for Injury Prevention, Newborn Screening, Newborn Hearing Screening, and Birth Conditions. The Newborn Screening Advisory Committee, in particular, always has families attending to provide their experiences and expertise with a particular disorder on the screening panel. The same is true of the Birth Conditions Advisory Group. 

There has been a concerted effort both to define and provide training for new members, particularly family or those with lived experience, on each of the advisory committees; what is the committee’s function (oversight, advice giving, operations, policy management or all of the above); what are the roles of committee members; is there an opportunity to get compensated for this role, etc.

Family engagement in some format has been written into all of the MCH contract deliverables for those contractors that are public serving (e.g. home visiting, community health center, etc.). All of the Title V funded CHCs have a mandate for 51% of their advisory committees to be community members and/or clients. There are also best practice standards for Healthy Family America home visiting family satisfaction surveys and advisory committee family engagement requirements. Yearly, family satisfaction surveys are completed and are incorporated into continuous quality improvement.

MCH’s Mental Health Care Access in Pediatrics project utilizes the Project ECHO model to increase pediatric primary care providers’ knowledge and confidence in treating children with mental health conditions. These Project ECHO sessions use web-based conferencing technology to bring participants together to participate in didactic training from the established Pediatric Mental Health Team of faculty experts on set curriculum objectives and to also present a case study and receive feedback and recommendations. The Pediatric Mental Health Team includes the family engagement specialist from NHFV who also serves as a compensated member of the project’s advisory committee. This specific faculty role ensures the family perspective is represented and that each Project ECHO curriculum includes training on engaging with the patient’s family and treating the patient in context of their family.

EHDI provides funding to Northeast Deaf and Hard of Hearing to provide family engagement through the role model program. Northeast Deaf and Hard of Hearing recruited deaf/hard of hearing adults to participate in the SKI-HI training to become a role model. The goal of the role model program is to connect families with a deaf or hard-of-hearing adult to share their experiences, provide unbiased information regarding language modality, and to help guide and support families through their journey with a child who is deaf or hard-of-hearing. Northeast Deaf and Hard of Hearing has also updated the NH EHDI resource book, which is provided to families once they have learned their child has a hearing loss. The book has information on audiology, language modality, early intervention, hearing loss, hearing aids, etc.

One of the home visiting agencies received a contract from DHHS’s DCYF to implement the “Strength to Succeed” Program. This is a voluntary program based on a trust-based model of peer-to-peer support from staff who have lived through their own adversities and have had positive outcomes. The agency reports having a culture shift as they have integrated staff with lived experience with substance use and/or involvement with DCYF (the State’s child welfare system) into their existing staff. This has helped them to raise the awareness of the language that families use along with the practices implemented at the agency level to better align the agency with some of the families they serve.

MCH’s Quality Improvement and Clinical Services Programs is working with and financially supporting colleagues at the Northern New England Perinatal Quality Improvement Network (NNEPQIN) with the goal of establishing a representative Perinatal Community Advisory Council (PCAC). The PCAC (formally sitting in NNEPQIN) will be a key component in MCH and NNEPQIN’s strategy in fostering accessible, respectful and safe perinatal care in the State.

NNEPQIN and MCH engaged with staff at the Foundations for Healthy Communities who had expertise in developing community advisory councils, and who helped structure the workplan with the following goals:

• Develop the PCAC, including structure, guidelines, operating principles and procedures;
• Support the design, execution, and analysis of focus groups and qualitative interviews with people from historically marginalized communities to inform the work of the PCAC;
• Recruit and onboard a diverse, representative group of eight to twelve advisors;
• Provide training, education, and guidance for PCAC members as well as MCH and NNEPQIN staff to optimize engagement and collaboration;
• Recommend best practice strategies to address disparities and promote equity at the individual, organizational and systems levels.

Focus groups (described below) were held in spring and summer of 2021 and informed the PCAC recruitment which is currently happening at this time, mostly through social media. Targeted individuals are currently pregnant and/or have been pregnant within the last two years. In early May, NNEPQIN hosted a virtual “Open House” to introduce those interested and to delineate the optimal commitment and engagement timing. The first PCAC meeting was held on June 7, 2022 and will continue to meet monthly via Zoom. It is anticipated that the meetings will be co-chaired, will remain confidential with the members deciding what type of feedback and recommendations to share with NNEPQIN and MCH. In turn, NNEPQIN will report to the PCAC on how their work has informed and shaped projects going on in the State over time. The PCAC will also guide implementation of core elements of the patient safety bundles developed by the Alliance on Maternal Health (AIM) and co-facilitated by MCH and NNEPQIN.

Focus Groups

MCH has increased the utilization of focus groups to inform its activities. As part of their Alliance for Innovation in Maternal Health (AIM) work in conjunction with NNEPQIN and for the development of the PCAC, focus groups were facilitated with current and former obstetrical patients across the State. One group specifically focused on pregnant and parenting people with SUD.

Given that substance use is a key driver of poor maternal health in New Hampshire and often leads to limited participation in prenatal and postnatal care, this group was important to engage. The original intent was to include members of NH communities identified as having poor perinatal outcomes, specifically those who are Medicaid insured, East African (the majority of the refugees in the State), Spanish-speaking, and/or BIPOC, but the project was delayed several times by COVID‑19 pandemic surges. These focus groups have been rescheduled to the fall of 2022.

In late 2020, as described in last year’s block grant, MCH home visiting staff helped to convene a group of mothers to talk about their experience being pregnant and having a baby born exposed to substances. The purpose of this discussion was to inform the subsequent SEI (substance-exposed infant) 2020 pilot project seeking to connect families using substances during pregnancy with family support, and strengthening services during pregnancy and after. While the work itself was completed outside this reporting period, lessons learned and the final product from this convening (a one-page handout “Real Moms, Real Voices: A Note to Providers”) has been shared with various partners, with the goal of bringing in parent voice to discussions where they are not currently present. This document was shared with NH’s Perinatal Substance Exposure Taskforce, NH HFA Supervisors and Program Managers, and in the MIECHV MALL with other MIECHV awardees.

With CDC COVID‑19 pandemic funding focusing on health equity, MCH was able to add to  BFCS’s contract with NHFV historically for the first time ever. This additional funding will leverage NHFV’s role as the facilitator of the birth through eight advisory group (made up of families and community advocates) to NH’s Council on Thriving Children in order to facilitate family based focus groups with the intent to assess access to health care and parenting support programs. These will include level of family engagement, referral systems and barriers to service. The scope of services includes directives to

• Gather family input as it relates to closed loop referral systems, including areas of concern and recommendations relative to communication tips that can support centralized referral and intake implementation and care coordination for successful family engagement;
• Make recommendations for marketing and communication to families about access to needed services, health care access and immunization and/or vaccination, and referral follow through with identified agencies;
• Identify services, programs and/or resources that were most helpful and most utilized during the COVID‑19 pandemic, as well as needs that were not met;
• Identify barriers to accessing supports including, but not limited to transportation, technology, accessing emergency supplies; and
• Identify concerns about the COVID‑19 pandemic and immunization/vaccination for early childhood families including potential access barriers.

In addition, NHFV is in the process (under this funding) of developing a survey that will gather family input on adverse childhood experiences (ACEs).

MCH’s Early Childhood Comprehensive Systems and Community Engagement group used the same pandemic funding to put out a Request for Applications for an agency to work with NHFV on the family focus groups as well as to conduct additional focus groups in the perinatal population, on the topic of the Plan of Safe Care (POSC).

Continuous Quality Improvement (CQI)

During the annual writing and review of workplans, goals and objectives, each MCH program seeks to incorporate family engagement in its approach. MCH’S Early Hearing Detection and Intervention (EHDI) program involves several parents in their CQI process as well as the NH chapter of Hands and Voices, reviewing data for hospital and diagnostic centers in regards to performance on screening and diagnostic evaluations, documentation in the data system and referral to diagnostics and early intervention.

MIECHV is focusing on family engagement with contractors as part of a larger CQI effort, devoting time during the monthly Local Implementing Agency (LIA) supervisors’ meeting to provide training on how to involve families in this particular arena. At one meeting this past year, the federally led HVCOIIN’s Parent Leadership Toolkit was reviewed as was the NH Children’s Trust’ (NHCT) family engagement campaign and their Strengthening Families Summit, Parents Leading the Way. Family engagement in CQI is discussed in all coaching sessions including barriers to engagement. Staff turnover has impacted family retention rates and the trust necessary for families to join in this work.

There is recognition that the need and challenges faced by LIAs to authentically engage families in CQI are often similar to those that occur at the state level. As such, awardee staff have sought opportunities to elevate family voices within the broader early childhood system in NH. For example, the Home Visiting Program Supervisor attended workgroups to support family engagement within the broader early childhood system, with identified champions of family engagement from both the Department of Education (DOE) and DHHS’s Early Childhood Integration Team (ECIT; co-lead by MCH). One of the workgroups, with TA from Zero to Three, has led thoughtful planning to support contract development of regional leads to support streamlined communication to the field and improved infrastructure of local regions to engage the family voice. Another workgroup on family engagement had representation from DOE and DHHS ECIT members and worked to align definitions from various programs to support authentic family engagement. This work supported providing contextual information that will be provided to the Birth-8 Advisors quadrant of the NH Council for Thriving Children lead by NHFV as previously described.

BFCS

BFCS continues its commitment to family engagement and partnership throughout its programs and activities. Families with CSHCN provide an important perspective that is always considered when making program decisions and planning for strategic change. New Hampshire Family Voices (NHFV), a long-standing partner whose staff consists of parents of CSCHN, are co-located with BFCS staff and provide leadership across the State to families and family-serving agencies. Program staff participate in a variety of family partnership activities described in this section. 

Advisory Committees

The CSHCN Director is a Department representative to the Council for Youth with Chronic Conditions (CYCC), established by NH RSA 126.J, to promote the assessment of the needs of children/youth with chronic conditions and their families; serve in an advisory capacity to DHHS, the Department of Education, and the Insurance Department for policy and program development. The CYCC includes up to 13 members who are the parent or guardian of a CSHCN, appointed by the Council and another appointed by the Governor. In addition, Council membership includes a youth less than 30 years of age who has a chronic condition, state agencies, legislators, and community-based organizations serving CSHCN.

The CYCC strives to enhance community-based family supports that meet the unique needs of CSHCN and have been instrumental in providing stakeholder input through the process of redesigning the programs administered by BFCS. The Council responsible for increasing awareness in the public and private sector of the medical, social, and educational issues affecting CSHCN and their families. In 2001, the Council increased membership, stakeholder affiliations and collaboration with other organizations to identify and create a collective voice. A new website, nhcycc.org, was created to be more accessible and increase social media presence. Finally, Community Health Institute/JSI (CHI/JSI) accepted a contract and began a qualitative need assessment for this population.

Family support activities under the Partners in Health Program include the requirement for each regional agency to have a family council that serves as an advisory body. Each council is comprised of members who are, or have been, CYSCHN or families of CYSCHN currently receiving services. Flexible funding and resources, supported by Social Services Block Grant (SSBG), are used to support families with CSHCN using processes developed by councils to determine utilization of funds for families’ needs and council activities.

Strategic and Program Planning and Quality Improvement

To help ensure that CSHCN and their unique needs are adequately represented in system design, planning and service delivery across the system of care, NHFV participates in meetings with state agencies, local service organizations and other professional organizations. Staff from NH Family Voices finalized a review of the National Standards for Care Coordination for CSHCN, in collaboration with BFCS health care coordinators. The subsequent report outlining priority recommendations was submitted (June 2021) to guide the quality improvement project that will culminate in the redesign of the scope of their work for care coordination in the next biennium (SFY24-25).

BFCS continues to partner with NHFV to plan and facilitate training opportunities for CSHCN and their families. Family Support Coordinators frequently seek assistance to recruit, retain and strengthen family support advisory council members. While this partnership model has been used primarily with Partners in Health, it has been identified as a critical program component to be carried over into the new model being developed for care coordination. NHFV will continue to support family council members through orientation, training, and mentorship.

Workforce Development and Training

BFCS also contracts with NHFV to develop and implement a training plan, in consultation with program and Bureau staff, to facilitate statewide training opportunities for individuals who work with CSHCN and their families. Topics include, but are not limited to Standards of Quality for Family Strengthening and Support Certification, Motivational Interviewing, Supporting Children’s Remote Learning, Healthcare Transition, Special Education during COVID‑19, Epilepsy Overview and Self-Management, Engaging Families Using the Right Question Strategy, Person-Centered Care, Charting the Life Course, and Bereavement. These opportunities reflect one way that the Bureau provides activities to strengthen and advance family partnership in the Title V program. 

Block Grant Development and Review

NHFV is also an active participant in the preparation of each year’s Title V Block Grant application and annual report. In addition to attending regular meetings to discuss performance measures and program improvements, family members review sections of the reports and provide input to ensure the family perspective is incorporated throughout. Although mostly virtual meetings have replaced in-person meetings, BFCS leadership continues to meet with NHFV monthly and includes them in the invitation to the federal review in the fall, each year.  

Materials

Through NHFV’s contract, educational materials are distributed through trainings, presentations, and mailings. In FY2021, 2,169 publications/resources were distributed including the educational and informative newsletter, Pass It On. The guidebook “Maneuvering through the Maze” is available in both English and Spanish providing a listing of statewide resources for families who have CSHCN. Available in hard copy, it was downloaded 2,838 times in FY2021. As a co-leader for Watch Me Grow, NH’s developmental screening system, and the employer of the CDC’s Act Early Ambassador, they also distribute Learn the Signs Act Early educational materials.

Program Outreach and Awareness

To help assess program effectiveness and satisfaction, all BFCS contractors are required to distribute and report on an annual Family Satisfaction Survey. NHFV uses information collected from this survey to identify areas to target enhancements to outreach efforts. For example, during the COVID public health emergency, they determined the need to increase their social media presence for outreach and training. Finally, outreach to HC-CSD and SSI applications is provided by both NHFV and directly by BFCS. 

[1] HRSA, Title V Maternal And Child Health Services Block Grant To States Program

Guidance and Forms for the Title V Application/Annual Report (2020).