III.E.2.b.ii. Family Partnerships

RIDOH and RIPIN

RIDOH partners with the RI Parent Information Network’s (RIPIN) to support family engagement and family leadership Development through a variety of strategies including:

• Family participation on advisory committees
• Development and distribution of communication materials
• Program outreach and awareness
• Family member review of Title V Block Grant
• Increasing family involvement in RIDOH MCH Programs
• Stakeholder engagement in Disparities in Infant Mortality (DIM) Advisory Board
• Stakeholder involvement in the Birth Centers Regulatory Advisory Committee

Family participation on advisory committees

RIDOH contracts with RIPIN to convene The Family Voices Leadership Team, an advisory body composed 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.

In addition, RIPIN Family Voices staff attends many advisory committees to provide the family perspective within RI systems. Staff maintain attendance at the following advisory committees:

• Executive Office of Health and Human Services (EOHHS) Consumer Advisory Council
• The Medicaid Managed Care Plan, Neighborhood Health Member Advisory Board
• The RIDOH Pediatric Emergency Medical Services Advisory Board
• The Title V Policy Team
• The Governor’s Commission on Disabilities
• The Children’s Coalition Advisory Board - Department of Children, Youth, and Families
• Governor’s Children’s Cabinet

Within these committees, the Family Voices staff provides their perspective as a family supporting a child/young adult with special health care needs. Because they are consumers of the many services that are utilized by this population, they can articulate and work towards ways to better communicate with providers.

RIDOH and Other Family Engagement

Membership of the Family Visiting Advisory Council includes the Chair of the Parent/Caregiver Advisory Committee (PCAC), a committee of parents and caregivers currently engaged in one or more family visiting programs charged with providing input to family visiting and early childhood related goals, policies, priorities, plans, and strategies, especially pertaining to families.

In addition, the Rhode Island Pregnancy & Postpartum Death Review Committee (PPDRC), a newly  established multidisciplinary committee that reviews deaths that have occurred during pregnancy or within one year of the end of pregnancy (this has replaced the Maternal Mortality Review Committee) includes individuals or organizations that represent the populations that are most affected by pregnancy-related deaths or pregnancy-associated deaths and lack of access to maternal health care services.

The Perinatal Neonatal Quality Collaborative of Rhode Island (PNQCRI) is a statewide consortium of perinatal clinicians, hospitals, and policy makers and governmental entities that aims, through the use of improvement science, to enhance the Postpartum transition between hospital/birth center to home and improve maternal and birth outcomes across Rhode Island. PNQCRI involves subject matter experts, uses successful evidence-informed strategies, and employs data-driven quality improvement methods and well-accepted project management processes. The committee is dedicated to note only involving public health and healthcare providers but also community members as well. MCHP has supported three community stakeholders from historically racially marginalized communities to sit on the committee. 

Finally, Title V is working to fully engage the perspectives of families, particularly families of color to address perinatal and birthing disparities within the birthing parent system of care through partnerships with community stakeholders, cultural groups, and networks, such as SISTA FIRE.  Through these partnerships, administered programs, including family home visiting, family planning, oral health, and other preventative care, are seeking guidance on: 1) Translation & Interpretation, 2) Trauma Informed Care/Consent, 3) Cultural Bias, 4) Community Resources, and 5) Workforce Diversity. This includes soliciting solutions to challenges from the community.  This coming year, SISTA Fire, a womxn of color network advocating for change within RI, will continue its collaboration (funded by the MCH TA Grant)  with Women and Infants Hospital to increase perinatal workforce diversity and address disparities of care present for pregnant people of color. Additionally, SISTA Fire is currently working to build out a support network for doulas of color and support the development of doula certification and reimbursement infrastructure.

In addition, Quatia Osorio, RIDOH’s perinatal community consultant, will continue to serve as an advisor and thought partner to inform racial equity initiatives and assist in the development and implementation of the MCH racial equity action plan. This includes her supporting MCH leadership in the development and implementation of racial equity organizational initiatives, objectives, and strategies related to the advancement of racial equity. Ms. Osorio assists in grant writing, program planning, community implementation, and the collection and analysis of data to inform strategies in MCH programs and services. To date, Ms. Osorio has partnered with the MCH Program to complete work plans for Rhode Island’s five domains and one geared towards infant mortality. These work plans not only focus on how to complete our priorities but also take a racial equity focus. Additionally, Quatia will continue to help to review and assist in integrating maternal child health initiatives into the Health Equity Zone structure. For instance, she is currently working with the Health Equity Zone to develop a structure for dispersing 125K in funding to perinatal community initiatives as well as being awarded funds to implement perinatal workforce development activities.

Development and distribution of communication materials

Through our partnership with RIDOH, Family Voices has created many valuable resources that are shared with families that are navigating the special needs systems in RI. Those materials created are:

• The Family Voices Connecting the Dots Resource Guide: A booklet of commonly used community – based resources and services compiled into a printable format and placed on the RI Parent Information Network website.
• The Family Voices Making the Connection Support Group Guide: A booklet of local support and peer groups that families can use to connect to other families in similar situations.

Program outreach and awareness

RIPIN maintains a calendar of regular outreach and workshops. The RIPIN Workshops are 2-hour sessions that are FREE to parents and provide a helpful overview of many RI systems. These workshops are presented throughout the year (minimum of 1 per month) in various communities upon request, and in the RIPIN Office. Because families do not always have access to transportation or time away from work, RIPIN also offers some of the workshops as online webinars for families to access at a time that is convenient to their needs. The topics covered include:

• Basic Rights in Special Education in English & Spanish (also a Webinar)
• Bullying and Harassment of Students with Disabilities – What Parents and Educators Need to Know in
• English & Spanish (also a Webinar)
• Caregiver Self Care (webinar)
• Coping During COVID (webinar)
• Developmental Disability Application Process (webinar)
• Effective Facilitation Skills
• Homework Help
• IEP: A Blueprint for Student Success ages 3-13
• IEP: A Blueprint for Student Success ages 14-21
• Pathways to Adulthood for Youth with Developmental Disabilities
• Policy 101
• RI Medicaid Options for Families with CYSHCN
• Section 504: A Parent’s Guide in English & Spanish (also a Webinar)
• Skills to Effective Parent Advocacy in English & Spanish, also Online as a Webinar
• Transition to Early Intervention to the Successful Preschool IEP (also a Webinar)
• Family Guide to Rhode Island’s Multi-Tiered System of Support (also a Webinar)

Block grant development and review

RI Department of Health invites a family member to the Title V grant review each year to assist families with understanding Title V and to provide the family perspective on navigating the complex systems of care for those with disabilities. RIPIN staff are also invited to take part in the health needs assessment.

RIDOH MCH Programs and family involvement

The Perinatal and Early Childhood Health Team at RIDOH applied for Title V MCH Venture Capital funds to increase family involvement in the RIDOH’s early childhood programs. The early childhood programs depend on parents and caregivers to provide feedback on the system of services available to families in RI communities. It has been a challenge to identify, engage, and retain parents. The funding was requested to: 1) to create and sustain an effective Parent/Caregiver Advisory Committee (PCAC) and 2) to be trained on how to run Parent Cafés. As a result of the Title V funding, staff attended the National Family Support Network’s Together for Families National Conference including the pre session training on Developing and Sustaining Effective Parent Advisory Committees. The orientation/kick-off session was held July 2019 for interested parents. Participants were selected, oriented and regular meetings took place through early 2020. This work was rolled into the Family Visiting strategic plan, which includes a focus on actively involving parents/caregivers in input, guidance, and feedback about RIDOH’s early childhood programs.

RIDOH and CHW/Peer Resource Specialist Contract

RIPIN contracts with the Department of Health to develop and assure family-centered, community-based, culturally-competent systems of care that are comprehensive, universally accessible, and effective for all Rhode Island children, youth, and adults.  To accomplish this goal, RIPIN contracts to recruit, hire, and train Family / Peer Resource Specialists that are current or recent consumers of Rhode Island’s community based programs in the maternal and child health and special needs or disability service system, have knowledge and / or experience working with these programs, and are knowledgeable about current healthcare issues. Resource Specialists have been an integral component of the MCH program since 1986. This family / peer involvement has strengthened Title V’s capacity to deliver effective services, to address critical health issues, and to involve the community in the discourse that leads to effective program planning for the State’s maternal and child health and disability population.

Peer Resources Specialists assist RIDOH in administering major public health programs that address child development, health and prevention, immunization, family planning, nutrition, lead poisoning, adolescent and school health, as well as services for families raising children and youth with special health care needs and adults with disabilities.  Through the RIPIN contract, RIDOH is meeting its goal to deliver programs in an integrated fashion to achieve equity at that community level.

The overall program objectives are:

• To build opportunities for soliciting and using the experience and perspective of consumers and families in the design, implementation, and evaluation of programs.
• To utilize Resource Specialists as informed spokespersons and advocates for maternal and child health and disability programs.
• To identify benefits and barriers to children, youth, and adult participation in these programs through effective outreach in various settings and to recommend changes to address identified barriers.
• To recommend policy and procedural changes to assist the Department in meeting the complex needs of the community.
• To develop partnerships between consumers, families, the Department, and community.
• To support the professional growth of Resource Specialists by providing training in the elements of family centered care, communication and advocacy, social determinants of health, and skills that could enhance leadership.

In addition to the above objectives, the Resource Specialist Program also supports the following professional growth objectives:

• To become articulate communicators of the elements of family-centered, community-based, and culturally sensitive care.
• To become effective advocates for family centered services systems for consumers and families.
• To develop work and interpersonal relationship skills leading to prospects for employment or further career development.

The following elements are essential to an effective Resource Specialist program:

• Orientation and ongoing training.
• Development of work plans done in collaboration with the program.
• Provision of support and regular supervision of Resource Specialists in their role.
• Flexible work hours.
• Regular peer support.

Stakeholder engagement in Disparities in Infant Mortality (DIM) Advisory Board

When undertaking the Infant Mortality CoIIN project, RIDOH sought to convene a diversity of stakeholders in order to thoroughly assess the nuances of why certain gains made in supporting pregnancy and the perinatal period were not being felt by all segments of the population in the state. For the Disparities in Infant Mortality Advisory Board, RIDOH prioritized identifying womxn of color active in the perinatal health community at the community-level, as well as diverse stakeholders in perinatal health. Community-level stakeholders represented doula work and a parenting support and education agency. Other stakeholders included health care providers and public health. RIDOH invited public health representatives from the Center for Health Data and Analysis (CHDA), the Family Home Visiting Program (FHV), the Maternal and Child Health (MCH) program leadership, as well as the Health Equity Institute (HEI). In its first year the DIM group brought together 12 individuals representing 4 diverse stakeholder groups. Heading into the second year of the group, stakeholders representing policy and advocacy, as well as community organizations were added, and membership increased to 16 individuals. The DIM advisory board met throughout 2018- 2019 to discuss data, consider the perspectives of womxn of color in the community as shared by the advisory board members, and develop recommendations for the MCH leadership team. Seeking to follow in the footsteps of Oregon, Minnesota and most recently New York City, the DIM group considered how to put a strategy forward for doula reimbursement for Medicaid beneficiaries. Several members supported RI’s recently passed Doula Bill and the certification of the doula workforce. The DIM advisory board and the MCH program will work with community advocates over the next year and continue to advise on different aspects of building doula reimbursement and certification infrastructure.

Stakeholder Involvement in the Birth Centers Regulatory Advisory Committee

The Birth Centers Regulatory Advisory Committee (BCRAC) was established in 2018 as a collaborative effort between the RIDOH MCH program and Health Facilities Regulations program. In response to requests for further discussion on revisions to the regulations, RIDOH established and convened the BCRAC, including representatives from the obstetrics/gynecology, midwifery, community health worker, and doula professions among its membership. The goal of the BCRAC was to draw together these various interested party groups, review/discuss the Regulations, receive detailed input on possible revisions to the regulations, and produce a report on the BCRAC’s findings for presentation to the Director of RIDOH. The BCRAC met 6 times during a period of 5 months. The recommendations will then be implemented at the discretion of the RIDOH Director and the department’s facilities regulations team. This is the first advisory committee of its kind at the department of health focused on regulations. The regulations were worked on by the RIDOH team and presented back to the BCRAC in the Fall of 2019. The regulations received extensive public input and should be finalized in late 2020. The MCH program was instrumental in recruiting a diverse cross-section of participants from the community to serve on the committee, which is a testament to its partnerships and collaborations in the community.