III.F. Public Input

Public Comment

The mission of the Rhode Island Department of Health (RIDOH) Title V MCH Program is to build integrated systems that support health, growth, and development for MCH populations, including children with special health care needs (CSHCN). RI has regular mechanisms in place to obtain input and feedback on MCH programs through advisory and other groups (coalitions, collaboratives etc.) charged with addressing specific public health programs and initiatives. Some of these groups are administered by RIDOH and others are administered by external partners, including other state agencies. Input related to state MCH needs, capacity and priorities are collected at these meetings from participating stakeholders, other state agencies, providers, and consumers which include families with CSHCN and incorporated into program planning and development. (Please see appendix for full list of committees)

Extensive public input was sought during 2018-2020 for the needs assessment. Specifically, Title V leaders organized an extensive process for community and workforce engagement in the needs assessment and strategic plan including the following surveys and events:

Population & Professional Surveys

• Statewide Community Health Survey (476 responses) distributed by the RIDOH
• Statewide Professional Survey (449 responses) distributed by the RIDOH
• 2019 Youth Survey (188 responses) in collaboration with Adolescent, School & Reproductive

Health Programs

• 2019 Parents of CSHCNs Survey (117 responses) distributed by RIPIN
• 2020 Womxn of Color Survey (200 responses) distributed by SISTA FIRE

Community & Stakeholder Input

• 2019 Youth Advisory Council Focus Group
• 2019 Womxn of Color Birthing Stories key learnings (approx. 300 responses) collected and summarized by SISTA FIRE
• 2020 Parents of CSHCNs Focus Group
• 2020 Health Equity Zone Collaborative Conference Focus groups: Conference members (statewide Health Equity Zone leads, local organizations, community activists, and constituents) were split into smaller focus groups and assigned MCH populations to cover that aligned with their organizational focus.
• RIPIN Conference: RIPIN survey findings were shared and Parents of CSHCNs shared their personal stories and gave policy recommendations to stakeholders.

RIDOH has several platforms available to get feedback from families in RI, especially families raising children with special healthcare needs.  Below are some examples:

The Family Visiting Advisory Council. The council are made up of parents/caregivers from across rural, suburban, and urban RI that at one point were recipients of Family Visiting services. The committee is convened regularly by RIDOH Family Visiting staff and participants are reimbursed for their time and provided food, refreshments, and childcare during meetings. The council advises on different topics such as: family engagement, family visiting marketing and outreach, family needs, and family visiting service asset and gaps. In the coming year, the committee will continue to meet and advise on the above topics.

Rhode Island Parent Information Network: The RI Department of Health (RIDOH) contracts with the Rhode Island Parent Information Network (RIPIN) for Peer Professional Support Services to support the Title V Program in ensuring a quality system of health care for Children and Youth with Special Health Care Needs (CYSHCN). Through the employment of families of CYSHCN, RIPIN provides training to individuals who have actual life experience to assist other families of CYSHCN. Specific areas of Peer Resource Specialist support include the administration of a comprehensive resource, information, and referral system; training, education, peer support, and system navigation. In addition, the Peer Resource Specialists promote the values of cultural diversity, family centered systems, and family and professional partnerships. The RI Parent Information Center is also the federally designated Family to Family (F2F) Health Information Center for the State of Rhode Island. RIPIN has re-committed to the cause of promoting racial justice, both in our workplace and in our community.

We’ve enhanced our professional development, created safe spaces for staff to talk about race, and improved data collection about the race, ethnicity, and language of those we serve. RIPIN is dedicated to addressing inequities in health care and education. Currently, 90 percent of RIPIN employees are certified or working toward Community Health Worker certification. The COVID-19 Pandemic hit 6 months after RIPIN moved into a new building to accommodate their growing staff. All of RIPIN’s staff were able to successfully transition to working remotely in order to stay safe but still provide service to the community. The amount of one-to-one support families are receiving is higher than it’s ever been. Our referrals from numerous state and community entities include DCYF, RIDOH Birth Defects Office, Cedar Family Centers, schools, and CAP agencies. The online meeting format for advisories, testifying, support groups, and coalitions allowed us to attend over 300 meetings and provide training to over 12,000 individuals.
 

Family Voices: The RI Department of Health (RIDOH) ensures the incorporation of family leadership through contractual support of the Family Voices (FV) program which is housed within the RI Parent Information Network (RIPIN). Family Voices is a national grassroots network of families representing Children and Youth with Special Health Care Needs (CYSHCN) with a designated affiliate office in each state and territory. The Family Voices program fulfills the Title V CYSHCN mandate to provide opportunities for parent engagement, leadership development, and policy advocacy to address the uninsured and underinsured CYSHCN. Family representation and/or input is incorporated into the following: task forces, advisories, and councils where policies and decisions are made that will impact CYSHCNs; communications development/distribution; parent/caregiver support groups; community outreach; and legislative policy development/advocacy.
 

Family Voices Leadership Team: RIDOH contracts with RIPIN to convene The Family Voices Leadership Team, an advisory body comprised of state agencies, healthcare providers, and community stakeholders, to provide expertise and input on a variety of issues affecting the system of care for CSHCN. Current members include:

• The Autism Project
• Bayada Home Health Care
• Bradley Hospital - (Children’s Behavioral Health)
• The Governor’s Commission on Disabilities
• Parent Support Network of RI
• Protect our Health Care Coalition of RI
• RI Behavioral Health, Developmental Disabilities, and Hospitals
• RI Department of Health, Office of Special Needs, Birth Defects, and Emergency Medical Services for Children’s Programs
• RI Executive Office of Health and Human Services
• RI Kids Count
• RI Parent Information Network
• United Health Care
• United Way
• RIDOH staff also participate in the Family Voices Leadership Team and provide heavy input on agenda topics and planned activities. With the events of the pandemic over the past year, the group has still been meeting monthly with every other month having a working group. During the working group meetings, RIPIN convenes community leaders to gather data from families around how they access different aspects of health care. We promoted telehealth and provided resources and trainings around COVID-19 related issues. This included health coverage changes and supports for families who are distance learning.
   

Family to Family Health Information Center (F2FHIC): RIPIN is also Rhode Island’s HRSA funded F2FHIC, which is housed within Family Voices. This program provides families of CSHCNs with support, resource referral, training workshops, advocacy, and relevant information via newsletters/publications/websites. The Leadership in Family and Professional Partnerships provides technical assistance, training, and connections among the F2FHICs in the states and territories. The RIPIN Family Voices Manager has been facilitating regional calls among the Region A FV and F2Fs for the last 3 years creating connections that increases our reach and enhances our service to families.
 

RIPIN Peer Resource Specialists: Through a contract with RIDOH, RIPIN employs Peer Resource Specialists to strengthen Rhode Island’s capacity to plan and deliver effective services to special needs, disability, and vulnerable populations. The Peer Resource Specialists bring the perspective of parents, youth, and consumers into the programs where they are placed. In addition to employment within the RIDOH, Peer Resource Specialists are employed throughout the CYSHCN service system, assisting healthcare professionals, community stakeholders, and policy leaders in providing support to CYSHCN and their families. RIPIN has developed and registered an apprenticeship program with the RI Department of Labor and Training, to further support the development of certified community health workers (CCHWs) utilizing employed Peer Resource Specialists. RIPIN has aligned its professional development programming to the domains of the certification standards. RIPIN employees are expected to earn certification within their first 18 months of employment. During the last year, Peer Resource Specialists have worked with the following RIDOH programs: Special Needs, Birth Defects, Oral Health, Emergency Preparedness, Home Visiting, Health Information Line, Chronic Disease, WIC, and Immunization.
 

Parent Support Groups: Family Voices hosts a monthly Peer Support Group for families and caregivers of CYSHCN, entitled Peer-to-Peer Connections. This group is facilitated by RIPIN staff members, who are also parents of CYSHCN. The goal of the support group is to foster guidance and support from peers who share their same experiences. Each month’s meeting focuses on a relevant topic common to all families supporting children and youth with special needs. Additionally, facilitators seek family input regarding trending issues that families experience and use that input to inform the work of Family Voices and the Family Voices Leadership Team. To keep the group fluid and encourage new participants, crafts and icebreakers are incorporated into the meetings. During the last year, FV facilitated in person meetings until the pandemic hit. They then were immediately able to transition to Zoom meetings. We hosted a total of 18 groups, connecting with 20 families, with 8 of them being new to RIPIN. To keep families engaged and also promote self-care, the facilitators delivered crafts to the families on 2 separate occasions and played bingo one month for prizes.

Title V Public Comment Period

The MCH Program did prepare a Block Grant Executive Summary as a Legislative Report finalized in December 2021.  This report was widely shared and invited comments. MCH Block Grant and Legislative Report are posted on the RIDOH Title V webpage and sharing electronically to Health Equity Zone Collaboratives, MCH committees and advisory boards, and through MCH staff professional networks. Comments and recommendations will be received through December 31, 2022.