Family Partnerships

RIDOH partners with the RI Parent Information Network’s (RIPIN) to support family engagement and family leadership development. 

Advisory Committees

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 DOH 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.

Materials Development

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 like 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 provides 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 Pre-School 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 & 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 Advisory Committee (PAC) 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.

Disparities in Infant Mortality (DIM) Advisory Board

When undertaking the IM 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 organizing 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 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 the bill.  

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 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. 

•                Support certification process & core competencies for MCH workforce statewide through Community Health Worker workforce development initiatives.

RI has benefited from a Certification Program for Community Health Workers since 2016.  To date, there have been 425 Certified Community Health Workers in RI, each with demonstrated competency in the following domains:

Domains

• Engagement Methods and Strategies
• Individual and Community Assessment
• Culturally and Linguistically Appropriate Responsiveness
• Promote Health and Well-Being
• Care Coordination and System Navigation
• Public Health Concepts and Approaches
• Advocacy and Community Capacity Building
• Safety and Self-Care
• Ethical Responsibilities and Professional Skills

Standards

1. Experience: Six months or 1000 hours of paid or volunteer work experience within five years

2. Supervision: 50 hours specific to the domains

3. Education: 70 hours relevant to the domains

4. Portfolio: Demonstrated competency through approved portfolio.  The portfolio is a collection of personal and professional activities and achievements. This part of the requirement for the Community Health Worker is highly personalized and no two applicants will submit the same documentation. Components of the portfolio include documentation and requirements of at least three of these categories: Community Experience & Involvement; Research Activities; College Level Courses / Advanced or Specialized Training; Community Publications; Presentations & Projects; Statement of Professional Experience; Achievements / Awards; Resume / Curriculum Vitae (CV); Performance Evaluation

Training and Development - RI MCH Program partners with the following training entities for CHW education and preparation:

• Community Health Innovations of RI provides ongoing training and apprenticeship opportunities especially for CHWs based in the community through health Equity Zones;
• Rhode Island College Healthy Jobs offers ongoing CHW courses at Central Falls Parent College, Rhode Island College campus in Providence throughout the academic term, and in a centralized Warwick location;
• RIDOH Chronic Disease Programs offers core community health worker training and modules specific to patient navigators working in chronic disease. 
• Dorcas International Institute offers a training for CHW working with refugees through funding by RI Foundation;
• Rhode Island Parent Information Network provides ongoing training opportunities for Resource Specialist including parents of children with special healthcare needs;
• Clinica Esperanza sponsors ongoing Navagante trainings for Bilingual / Bicultural CHWs.

All of these training programs have aligned their curriculum with Rhode Island’s Certified Community Health Worker standards meeting the certification requirements. 

RI MCH Program also partners with the Department of Labor & Training in supporting the Community Health Worker Association of Rhode Island (CHWARI) at the Rhode Island College.  CHWARI is an organization to provide CHWs resources around trainings and other professional development opportunities. The Community Health Worker Association of Rhode Island (CHWARI) actively supports frontline healthcare workers who work in underserved communities to improve high quality healthcare access for people in need. CHWARI envisions a state in which all Rhode Island communities receive high quality, equitable health and social services in order for all individuals to realize their optimal state of health and well-being.  The mission of CHWARI is to Increase the power of Rhode Island’s Community Health Workers to promote health equity through increasing access to quality healthcare and social services and conducting advocacy.

•                Engage community members, CHWs, and consumers in all areas of program, policy, and systems change.

• Health Equity Institute – Special Needs -  A main tenant of the MCH Program is supporting, empowering, training, hiring, and promoting parents and family partners at all levels of decision making, policy development, service provision, and community development. RIDOH partners with the RI Parent Information Network, Parent Support Network, Sherlock Center on Disabilities (RI's UCEDD), the Autism Project of RI, and other disease specific family organizations.  Parent leaders are cultivated and supported to lead policy initiatives, make systems improvements and champion principles of parent-professional partnerships. Parent support groups are organized throughout the state. RIDOH has contracted with RIPIN (Family Voices) to maintain a calendar of support groups based on topic, age, and language. Through the Family Voices Leadership Team, RIDOH has addressed systems barriers and developed a parent policy team to provide peer-to-peer support in addressing statewide policy, especially health reform.  Throughout RI over 1850 parents have been trained in navigating the special needs service delivery system such as basic rights, college success for students with disabilities, options for medical assistance, and transition planning.

• Peer Resource Specialists – Peer Resource Specialists are culturally diverse family members with experience accessing MCH services and are assigned to various RIDOH programs based on the program's need for parent and consumer participation.  Peer resource specialists are full partners in policymaking, outreach, and program quality assurance and evaluation. Currently, resource specialists are assigned to WIC, Immunization, Birth Defects, Diabetes Prevention, Wise Woman, Integrated Chronic Disease, Health Communications, Family Visiting, EDHI, Emergency Preparedness, and the Health Equity Institute.

• Youth Resource Specialists - Since 2014, the Health Equity Institute has invested in hiring and supporting Youth Resource Specialists. Their input into the transition process and generation of self-determination resources has been invaluable. Youth Resource Specialists are engaged in planning and leading the Dare to Dream Student Leadership event, represent RI at national youth forums, and promote inclusion in RI’s youth serving organizations.  In 2019, youth resource specialists led a monthly Youth Advisory Council where an average of 35 students with disabilities served as advisors to RIDOH programs and policies; presented at the national AMCHP Conference; organized the Dare to Dream conference attended by 450 students; and presented at the Turn Up Rhode Island Conference featuring career exploration for 300 students of color.    Unfortunately, youth conferences expected to take place in the Spring of 2020 were cancelled due to Covid. 

• Health Equity Zones (HEZ) – Each of the 10 funded Health Equity Zones has a lead organization (local government or local non-profit entity), that acts as a backbone on behalf of the coalition of key community stakeholders and residents in the proposed geographic area.  One of the key requirements of HEZ funding is heavy stakeholder and resident engagement.  This ensures that individuals who are experiencing poor health outcomes and health disparities are represented and are included in the decision-making process. 

• RI Asthma Control Program -  The RI Asthma Control Program (RIACP) is working closely with families and seeking to develop family leadership in multiple areas including but limited to: improving indoor air quality at home and in schools; asthma and chronic disease self-management skills; healthy housing policies; and training and support for development of advocacy skills. The RI Asthma Control Coalition, in partnership with RI Parent Information Network, helped RIACP initiate “Asthma Advocates in Action,” to help people with asthma and their caregivers build advocacy and leadership skills.

•                Continue to support a comprehensive system of engagement & leadership development for vulnerable populations.

Health Equity Institute –Health Equity Institute (HEI) was created by Director Nicole Alexander-Scott, MD, MPH in 2016 as a strategy to promote RIDOH’s three leading priorities.  The priorities include: 1) addressing the social and environmental determinants of health; 2) eliminating the disparities of health and promote health equity; and 3) ensuring access to quality health services for Rhode Islanders, including our vulnerable populations.  The mission of the HEI is to address systemic inequities so that all Rhode Islanders achieve their ideal life outcome regardless of their race, geography, disability status, education, gender identity, sexual orientation, religion, language, age, or economic status.  HEI recognizes that achieving health equity requires action, leadership, inclusion, cross-sectoral collaboration and shared responsibility throughout RIDOH, and communities across the state.  

HEI has substantial expertise in providing communities and policymakers with data, technical assistance, and evidence-based programs to address health disparities in vulnerable populations.  Several large programs are housed within the HEI, including: Disability & Health, Minority Health, Refugee Health, Maternal and Child Health, and the Health Equity Zones (HEZ).  HEI also provides collaborative support to all of RIDOH’s equity initiatives including: the Social Justice Roundtable, Sexual Orientation and Gender Identity Workgroup, Vulnerable Populations Data Collection Workgroup, Disparities in Population Health Goals, Social Determinants of Health Workgroup, Community Health Assessment Group, Commission for Health Advocacy & Equity, Community Health Resiliency Project, and the Kresge Initiative.

In addition to engaging diverse stakeholders in MCH work, RIDOH contracted with SISTA FIRE, an organization that works to create a network of womxn of color to build collective power for social, economic and political transformation. They focus on racial, economic, and gender justice work.  Birthing stories, two SISTA FIRE surveys were included as part of the needs assessment.  MCH intends to continue this contractual relationship to inform strategies in addressing health disparities throughout the MCH program.