KY’s Title V program is committed to partnering with families and consumers. These partnerships provide a unique perspective that strengthens the quality and effectiveness of MCH programs. Title V strives for services to be provided in a culturally competent manner that extends beyond medical interpretation due to language barriers and differences in health beliefs and behavior patterns of various cultures. MCH employs a family consultant who assists stakeholders to host Parent Cafés and provide trainings for nurturing families and other programs through work on KY Strengthening Families (KYSF). She represents MCH and is the family voice in policy, planning, and development of resources. The MCH family consultant participates with the AMCHP Family Engagement Community of Practice CoIIN to develop a family engagement tool kit.

To broaden the reach of programs and services, OCSHCN attempts to be reflective of the population served by:

• Seeking parent representatives from diverse cultural, socioeconomic, ethnic or racial backgrounds
• Improving geographical diversity through use of video conferencing during council meetings
• Encouraging Hispanic participation in support groups or adding representation on other support groups to reduce language barriers
• Embedding Family to Family (F2F) Health Information Center initiatives in onsite OCSHCN clinics and in select rural KY clinics (Autism clinic in Corbin, KY)
• The F2F Director has been on the CoIIN’s team for the last 4 years.
• Conducted trainings on what telehealth is and how to access telehealth.

OCSHCN funds support groups for Spanish-speaking families of CYSHCN. These support groups help Latino/Latina families with language and cultural barriers increase their knowledge and access to services, which will greatly enhance children's health and well-being and reduce caregiver stress that can negatively affect CYSHCN and their families.

OCSHCN has a long-standing partnership with the Louisville LaCasita Center which hosts “Una Mano Amiga” (A Friendly Hand) monthly support groups for mothers and a second group for families. Maria Fernanda Nota, MD, helped initiate the support groups at La Casita, and she replicated the concept in Lexington in January 2017. She operated “Un Abrazo Amigo” (A Friendly Embrace) until a local physician, Janeth Ceballos Osorio, MD, University of KY Pediatrics, took over in August 2018. The first support group meeting under Dr. Ceballos’s guidance was in October 2018.

Advisory Committees

Established OCSHCN advisory committees provide opportunities for family leadership and include:

• Hemophilia Advisory Committee (HAC)
• Parent Advisory Council (PAC)
• Youth Advisory Council (YAC) - eligibility is open to all CYSHCN (not just OCSHCN enrollees)

OCSHCN includes parent representatives on ad hoc groups (Data Advisory, Healthy Weight, Strategic Planning, and Periodic Action Learning Collaboratives). The goal is to grow parent involvement beyond a committee presence toward front-end collaboration. The more family members are involved and prepared, the more they can contribute. Training to orient interested parents and youth to agency operations is provided as needed/requested. F2F funds support training, and the peer-to-peer parent-match program provides mentoring. OCSHCN attempts to help families understand their child’s care and empower them to assume leadership roles to advocate for their own child and other CYSHCN. Leadership promotes a family perspective at the state level and invites the F2F project director to present at monthly statewide manager’s meetings as well as at advisory committee meetings.

OCSHCN provides stipend reimbursement for time, travel, and child-care costs for F2F and PAC members. Technical assistance to advisory councils includes staffing, guidance, orientation, logistical planning, and hosting of meetings. Opportunities are sought to provide F2F support parents fully or partially to attend national conferences and training events.

OCSHCN invites PAC members to staff training events, which are of a limited frequency agency wide. An orientation training document for new providers discusses the agency’s mission and the vision of family involvement. The co-directors of F2F are parents of children with special health care needs – now adults. They are valued and hard-working members of OCSHCN’s staff and are involved in a variety of aspects of agency operations on behalf of the CYSHCN population. Furthermore, a network of capable support parents assists with statewide initiatives and serves on external boards such as the UK Human Development Institute.

The MCH Early Childhood Mental Health team leads the KYSF and Youth Leadership Team. This team consists of family and youth organizations while advocating to promote strength-based, family, and youth-driven principles and values. The Leadership Team focus is to reestablish connections with Regional Leadership Teams and offer support.

• Regional Teams included family and youth representation in the following regions:
  • Eastern KY: 4 counties (Big Sandy)
  • Northern KY: 8 counties (Northern KY)
  • Western KY: 8 counties (Purchase Area)

Since the onset of KYSF, teams have:

• Hosted 6 two-day Family Thrive Training of Trainers that certified 217 trainers to promote best practices for family and youth engagement and use of protective factors to reduce the risk of adverse childhood experiences.
• Hosted more than 2,500 sessions and trained over 13,000 participants.
• Hosted parent, youth, and community cafés, which engage participants in self- reflective discussions about protective factors. Parents now lead or co-lead Parent Cafés in the Western and Northern KY Regional Team areas. Youth lead cafés in Western and Eastern KY Regional Team areas.
• More than 1700 people who have experienced a café since 2015.
• The Café Collective (social media group), which was created by the Western KY Team to help with advertising cafés to families. In 2019, other KY parents requested the opportunity to join the collective, so the group became public and promoted as the one-stop page for locating a café.
• The Leadership Team that developed a Family Thrive Action Guide in 2018 and distributed 1,000+ guides.

The KY Early Intervention (Part C) System (First Steps) has five parent representatives on the Interagency Coordinating Council (ICC). The mission of the ICC is to:

• Maximize the potential of infants and toddlers (birth through 2) having, or at risk of having, developmental delays and disabilities through a comprehensive statewide system
• Advise and assist the state lead agency in the ongoing development of the early intervention system

First Steps has a central office parent consultant to assure family perspectives on service delivery and programming. This consultant serves as the MCH parent consultant and reviews materials for all MCH programs and/or connects programs to families for parental input.

The Part C program conducts family surveys annually to assure the program is meeting family needs, which consistently indicate First Steps provides needed support so that parents know their rights, communicate their children’s needs, and learn how to help their children learn and grow. The parent consultant also compiles resources for parents and families, disseminates a bi-monthly family newsletter, and maintains consistent outreach on a monthly basis to families in order to ensure family perspectives on programming are current and addressed.

Parents participate in task specific workgroups to improve the family assessment process used by the Part C Program. Parents who are members of these two workgroups convene to develop quality standards and core competencies for service coordinators and early intervention services providers. The quality standards provide guidance for program improvement and may lead to the development of a tiered reimbursement rate.

As part of the State Systemic Improvement Plan (SSIP), new families view a short video that depicts what early intervention services look like and then respond to a short survey. Re-administration of the survey occurs after early intervention services begin. Data from the survey will help to determine the effectiveness of the provider coaching/mentoring professional development that First Steps is piloting.

Strategic and Program Planning

Families and consumers are included in efforts to develop family-centered programs across all programs within MCH and OCSHCN. HANDS solicits input from the perspective of parents and service providers through completion of two different satisfaction surveys on an annual basis, which impacts program planning.

• The HANDS Parent Satisfaction Survey is distributed to participants actively receiving services and those who have exited the program over the past twelve months
• The HANDS Site Satisfaction Survey is distributed annually asking about:
  • Support received from technical assistance services
  • Value of training opportunities
  • Areas of program implementation that need additional support
  • Materials and resources

Quality Improvement

Planning for increasing parent engagement to inform MCH processes began in 2018. In 2020, MCH established specific guidelines, a mission statement, training guidelines, and a tiered parent involvement structure for the Parent Advisory Council (PAC). Due to Covid-19 restrictions and constraints as well as workforce capacity concerns, the PAC has not yet fully launched this parent-led advisory council; but is actively moving this effort forward and anticipates parent recruitment and fully established PAC within FY2022. The MCH PAC will meet four times annually to review current projects in partnership with MCH to inform quality improvements across the MCH healthcare system. The PAC will undergo family peer support training and individuals will be mentored and trained on the various MCH projects, giving the PAC inclusion in overseeing and shaping guidance for ongoing needs assessment, program monitoring, educational offerings, and quality improvement activities within MCH.

In 2020:

• Many parent and family engagement programs were cancelled, including scheduled mini parent conferences across the state due to Covid restrictions or stay-at-home emergency orders. These conferences are set to resume beginning in 2022, with a mini one-day parent conference being held in 5 different regions throughout the state.
• First Steps parent consultant obtained a professional Zoom account in conjunction with the Coaching in Early Intervention Training and Mentorship program. This allowed staff in early childhood to utilize virtual means to reach parents and hold a parent engagement webinar.
• First Steps held a Virtual Parent Webinar with the focus on tele-intervention, subsequent changes made in services due to the state of emergency, how it effects families, and an explanation of the role that Coaching would hold in tele-intervention practices. Fifty-four (54) parents signed up for this webinar and the session was recorded for viewing after the event.
• Due to the nature of the state of emergency, much of the Parent Consultant’s duties shifted to greater parental support via telephone and Zoom as well as taking concerns and input from stakeholders known to the State Lead Agency in order to help shape the Part C response to the pandemic and include parental viewpoint and input as the SLA constructed the on-going, frequently changing safety and service protocols throughout 2020 for FY2021.

Workforce Development and Training

In 2018, the MCH parent representative provided multiple trainings to community partners, parents, MCH staff, and others on inclusion of the parent voice when developing trainings or educational offerings. The KSF framework was reinforced with MCH staff for inclusion in program planning and MCH best practice packages.

Block Grant Development and Review

Families and consumers had numerous opportunities to provide input on the 2020 Needs Assessment as well as the Title V application in KY. Two key components of the needs assessment were consumer surveys distributed through LHD and OCSHCN sites. MCH convened a specific focus group to assure parents of special needs children in the Hispanic community were able to inform the 2020 needs assessment outcomes. From this meeting, multiple parents were identified to participate in the MCH advisory parent group. OCSHCN continued the development of scorecards based on the 2020 needs assessment.

Materials Development

MCH programs continue to identify areas of parent education. Sources for this are PRAMS, local program reviews, and information requests received from DCBS. Based on suggestions and needs assessment data from multiple audiences, various parent virtual trainings have been developed in partnership with community agencies to address safe sleep, childhood injury prevention, and supports for programs working with parents/families.

ECMH training continues to concentrate on:

• Increasing adult awareness about why children exhibit challenging behaviors
• Building social and emotional skills of the adults who work with children birth to age 5
• Providing tangible, quick reference tools for use by teachers and parents about how to continue building these social and emotional skills in young children

As MCH plans for the next 5 years, work will continue to have a family/parent focus. Efforts specifically will be to support family use of technology to assure ongoing engagement when face to face activities/meetings are unavailable, expand services to underserved areas of KY, and build on the KYSF strength based approach in building protective factors that promote well-being in families and youth across the lifespan.

MCH will continue the positive work of KYSF, Family Thrive, Parent Cafés, and Connect the Dots curriculum and plans to develop a concise way to gather outcome data. MCH programs utilize the childcare health consultants (CCHCs) to reach families using local childcare resources. The CCHCs have provided ongoing strength-based education and outreach to families and childcares in a rapid manner to address the pandemic guidelines for childcare reopening, management of infectious disease in childcare agencies, and help to reduce anxieties for both childcare workers and families in supporting educational opportunities for COVID-19 mitigation and safety factors in the childcare setting.

With the reorganization of adolescent health programs which moved under MCH leadership, it is anticipated there will be additional opportunities to expand the reach to this population.