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

RIDOH and Family Engagement

RIDOH MCH is committed to family/youth/consumer engagement as we plan, implement, and evaluate RI’s MCH programs.  This engagement comes in the form of formal contracts, advisory committees, community collaboratives, and sharing information.

Advisory Councils

RIDOH convenes the Parent/Caregiver Advisory Committee (PCAC) as 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. Community members are compensated for their time and expertise.

Rhode Island Pregnancy & Postpartum Death Review Committee (PPDRC) is a multidisciplinary committee that reviews deaths that have occurred during pregnancy or within one year of the end of pregnancy that engages individuals and/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. Community members are compensated for their time and expertise.

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.

Community Collaboratives

Perinatal Neonatal Quality Collaborative of Rhode Island (PNQCRI) is a statewide consortium of perinatal clinicians, hospitals, community members, and policy makers and governmental entities that aims, using improvement science, to enhance the Postpartum transition between hospital/birth center to home and improve maternal and birth outcomes across Rhode Island. RIDOH MCH supports three community stakeholders from historically racially marginalized communities to sit on the committee. 

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.

Community Contracts

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.

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.

RIDOH contracts 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

RIDOH also contracts with RIPIN for Family Voices as the hub of family engagement for CYSHCN.  Specifically, Family Voices provides administrative and programmatic support for families of CYSHCN and YSHCN to participate in many advisory committees to provide the family perspective within RI systems. 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.  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

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.

Parent/Caregiver Advisory Committee (PCAC) advises on RIDOH 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.

Engage community members, CHWs, and consumers in all areas of program, policy, and systems change: RIDOH has engaged community members, CHWs and consumers in all program areas, policymaking and systems change in the following ways:

Commission for Health Advocacy and Equity: RIDOH, Health Equity Institute convenes the Commission for Health Advocacy and Equity (CHAE). The CHAE is a legislatively mandated commission created to address the social determinants of health and eliminate health disparities. The CHAE membership reflects the diversity of RI, including individuals from or representing racial / ethnic minorities (Latino, Native American, and Black), persons with disabilities, LGBTTQQ, and people with limited English proficiency. Members also represent a variety of disciplines including consumers/residents, academia, housing, substance use, advocacy, medicine, public health, business, child welfare, local government, community development, planning, commerce, transportation, and social services.

The Commission is required to complete a Disparities Impact and Evaluation legislative report every two years. The first report was published in January 2015, and it identifies disparities in 5 areas (nutrition and physical activity, asthma, infant mortality, chronic illnesses and oral health) that needed to be addressed. In addition to the five focus areas, the report identifies global recommendations for addressing health disparities in RI. The second report released in December 2017, establishes definitions of equity terminology including health, health equity, determinants of health, and health disparities and identified 2 priority areas that the Commission's work will focus on for the next two years. These priority areas are (1) increase minimum wage to $15 per hour, and (2) increase high school graduation rates. The Commission actively engages with community organizations, members of the public, and legislators to impact these two priority areas. The third report was published in January 2020 and highlights RI’s Statewide Health Equity Indicators. This report provides data related to these measures to help educate the Rhode Island General Assembly, State agencies, and partner organizations on health inequities in Rhode Island. For each measure, the report also includes examples of programs and policies in Rhode Island and across the country that are showing promise for reducing inequities.

During the 2020 pandemic, CHAE members participated on the State’s Equity Council to ensure equitable access to both COVID-19 testing and vaccine allocations. CHAE also issued a letter to the Governor in May 2020 sharing their urgent concerns from the community and recommendations pertaining to racial equity and health justice during the current COVID-19 crisis.  

Parent Leadership Initiatives: 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 system 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.

Stakeholder Engagement in the Health Equity Zones (HEZ): Each of the 15 funded Health Equity Zones has a lead organization (local government or local non-profit entity) that acts as a backbone on behalf of a collaborative of key community stakeholders and residents in the designated geographic area. One of the requirements of HEZ funding is to conduct authentic and in-depth stakeholder and resident engagement to ensure that individuals who are experiencing poor health outcomes and health disparities are represented and are included in HEZ decision-making and oversight efforts.

Governor’s Council on Behavioral Health: The Governor's Council on Behavioral Health is the State of Rhode Island’s behavioral health planning council. It was established by both federal and state law to review/evaluate the needs associated with Rhode Island's services for individuals with mental/behavioral health and substance use disorders. The RI Department of Health, Office of Special Needs participates on the Council which serves in an advisory capacity to the Governor and the General Assembly and has 18 Public Members.  More than half of the members are required to be consumers of behavioral healthcare services, their family members, and advocates.
 

During the last reporting period, the RI Department of Health, Office of Special Needs participated as a representative of the Department on the Governor’s Commission on Behavioral Health. In this role, the perspective of the needs of children/youth with special health care needs and their families were brought forward to state agency and community stakeholder leadership.

During the next reporting period, the RI Department of Health, Office of Special Needs will continue to participate as a member of the Governor’s Council of Behavioral Health. In this capacity, the OSN will advocate for the needs of children and youth with mental/behavioral health diagnosis and their families to be met through a quality system of services and supports.

Drug Overdose Prevention Program: The mission of the Drug Overdose Prevention Program is to decrease drug overuse, misuse and abuse and to decrease nonfatal and fatal drug overdoses in RI.  The program educates prescribers and pharmacists on the responsible prescribing of opioids, connects people struggling with substance use disorder (SUD) to community health navigator services, evaluates public health policies relevant to drug overdose prevention, improves access to drug overdose data, and engages diverse stakeholders to facilitate multi-agency collaboration and partnerships. The Program works very closely with and supports the Governor’s Task Force on Overdose Prevention and is responsible for overseeing the Prescription Drug Monitoring Program (PDMP).

Overdose Prevention Task Force: The Governor’s Task Force on Overdose Prevention and Intervention was created by executive order in August 2015. It is co-chaired by the Director of the Rhode Island Department of Health (RIDOH) and the Director of BHDDH (the state substance abuse agency). The task force meets on a monthly basis and includes state police, local police, healthcare providers, Emergency Medical Services (EMS), the Department of Corrections, the PDMP, recovery and treatment community centers, CBOs, and individuals in active recovery. In November 2015, the Task Force published a Strategic Plan and in May 2016, the Task Force released an Action Plan that outlines how the Strategic Plan will be implemented. The Strategic Plan includes four strategic initiatives: (1) expanding access to medication assisted treatment (MAT), (2) saturating high risk populations with naloxone, (3) preventing high risk prescribing of opioids, and (4) increasing access to peer-based recovery services. Each strategy has a statewide working group committed to development, implementation, and evaluation of the respective strategy. The plan is a rapid response to the overdose epidemic in RI and commits to reducing the number of overdose deaths by one-third within three years. This is a multi‐agency, volunteer-based approach that leverages existing resources and partnerships to stop the overdose epidemic in RI.

RI Department of Health Information Line: The RIDOH Information Line (HIL) is the Department of Health's single point of entry for telephone inquiries. The HIL answers an average of 6800 calls per month on behalf of the Department's programs and the Director's office. When there is a Health emergency within the Department or the State (e.g., COVID-19) the HIL will set up a separate line for the specific emergency. From October 02, 2019 – September 30, 2020, we have received a total of 206,867 calls (5,245 in Spanish and 457 in Portuguese), 122,510 calls were just for COVID-19. The office hours on the HIL are from 8:30-4:30pm, Monday through Friday. There are always at least two individuals (bilingual) on the phone line. The telephone system used by the HIL is a Uniform Call Distribution (UCD) system. This system allows all calls coming into RIDOH to come into a single number. From there, HIL staff will answer the calls and route them to the appropriate program/division if they cannot be answered by staff. The HIL phone number is 401-222-5960. The HIL maintains a call database. All staff have access to the database through their own computer with a personal login. Once a call is received, it is logged into the HIL call database. There is a Database Input Sheet that is used when logging in calls. There are currently 38 programs listed on the input sheet, for which calls are taken. The HIL maintains three voicemail boxes: an English voicemail, a Spanish voicemail, and an emergency voicemail. There is also a central email account for anyone wishing to contact RIDOH with questions, which is also answered by HIL staff. The HIL also manages the complaint intake for Health Professionals and Facilities Regulation. The complaints are received via telephone, e-mail, e-fax or walk-in. They are processed and forwarded to the respective programs. RIDOH also has the ability to stand up an Emergency Information Line (EIL) as needed to respond to a high volume of calls during emergencies and other crisis response scenarios. RIDOH is currently utilizing the EIL to respond to inquiries from the public related to the Coronavirus Disease 2019 (COVID-19) response.

Family to Family Health Information Center: RIPIN is also the 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 National Center of Leadership for Family and Professional Partnerships provides technical assistance, training, and connections to F2FHICs. Title V dollars are utilized to provide staffing support.

RIREACH: RIREACH is an initiative under the RI Parent Information Network (RIPIN) Call Center that works in partnership with the Office of the Health Insurance Commissioner (OHIC) and HealthSource RI. RIREACH helps Rhode Islanders with any type of health insurance including Medicaid, Medicare, commercial coverage (provided by an employer or purchased through HealthSource, RI) and the uninsured. Using a diverse team of advocates through a peer-to-peer support model, RIREACH provides assistance on the phone or in person, at both consumer’s homes and within the community, providing multi-program expertise that is critical to their ability to solve complex issues. Together with RI Family Voices, RIREACH provides valuable information and support to families of CYSHCN and transitioning youth in navigating and utilizing health insurance.