III.E.2.c Annual Report: Children with Special Health Care Needs

The Maternal and Child Health Bureau (MCHB) defines Children with Special Healthcare Needs (CSHCN) as “those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.” This includes a diverse group of children younger than 18 (about 20% of children in Rhode Island). It includes children with chronic conditions, children with medically complex health issues, and children with behavioral or emotional conditions. These children may have physical, developmental, behavioral, or emotional healthcare needs. These needs may appear in children of any age. CSHCN are often diagnosed with more than one condition. They also frequently experience difficulties in several areas, such as learning, behavior, gross or fine motor skills, chronic pain, and making and keeping friends. The Rhode Island Department of Health (RIDOH) strives to ensure that all children with special healthcare needs receive timely, high-quality, culturally sensitive healthcare.

The following priorities for children with special health care needs emerged from Rhode Island’s 2019 Needs Assessment:

1. Ensure effective care coordination for children and youth with special healthcare needs (CSHCNs)

Priority: Ensure Effective Care Coordination for CSHCNs

According to 2019-20 NSCH data, 22.3% of RI children ages 0-17 years have at least one special health care need, compared to 19.4% in the nation. Among children 3-17 years old, the prevalence of ADD/ADHD is 10.2%. It is also estimated that the current prevalence among children ages 3-17 with autism, Asperger’s Disorder, or other ASD in RI is 3.3%.

Medical Home/Care Coordination

To be considered a medical home a practice must be accessible, family centered, continuous, comprehensive, coordinated, compassionate, and culturally effective. In 2019-20, 44.2% of children with special healthcare needs (CSHCN) had a medical home, compared to 36.2% of CSHCN in 2018-19. This RI CSHCN measure does not meet the Healthy People 2020 target objective of 54.8%. In 2019-20, only 41.3% of CSHCN received effective care coordination, an increase from 35.1% in 2019-20. A larger combined sample size is needed to better understand families and CSHCN in receiving effective care coordination. In 2019-20, 69.0% of CSHCN are continuously and adequately insured in RI.
 

Impact on Families

RI continues to study and monitor the financial impact that many families with CSCHN experience. NSCH 2019-20 reports that 11.0% of families with CSHCN have had problems paying for any of the child’s medical or health care bills in RI compared to 5.5% of children without special healthcare needs.  NSCH data also shows that 16.1% of RI families of CSHCN had a family member stop working or cut down hours of work because of the child’s health or health conditions, compared to 3.7% families of children without special health care needs. The number of caregivers able to handle the demands of raising children ages 0-17 with special healthcare needs very well is statistically lower (45.0%) than caregivers raising children without special healthcare needs ages 0-17 (62.7%).

To respond to these issues and support this new priority, RIDOH will resume, continue and add strategies as follows:

Support the Enhancement of Care Coordination with the PCMH-Kids Practices, with Emphasis on CYSHCNs: Launched in 2008 by the Office of the Health Insurance Commissioner (OHIC), the Care Transformation Collaborative of Rhode Island (CTC) formerly the RI Chronic Care Sustainability Initiative (CSI-RI) brought together key health care stakeholders to promote care for patients with chronic illnesses through the patient-centered medical home (PCMH) model. Practices were supported through contract agreements negotiated between the health plans to provide per member per month payments to drive practice transformation and quality improvements (care coordinators, electronic medical records etc.). The adult PCMH initiative served as the pilot for the CTC implementation of a model for pediatric practices (PCMH-Kids) to provide children/youth including those with special health care needs with a medical home to enhance the system of care to improve health outcomes.

The RIDOH, OSN collaborates with the CTC for facilitation of contracts required to implement initiatives in support of Title V goals for children and youth with special health care needs and their families such as medical home implementation, care coordination, and health care transition. During the last reporting period, the RIDOH, OSN resumed work on initiatives that impact CYSHCN and their families that were delayed due to the COVID-19 Pandemic. This included collaboration with the CTC to address the implementation of those initiatives for CYSHCN/families identified through the RI Title V Needs Assessment. Included in this was implementation of an effective care coordination system for CYSHCN and their families including the successful transition of youth to the adult health care system. As such, the RIDOH in partnership with the CTC began development of pilot projects for implementation through the PCMH-Kids System of Health Care for CYSHCN.

Advance an Adolescent Healthcare Transition Project with Patient-Centered Medical Homes for Children: In the 2021-2022 reporting period, the RIDOH together with the CTC commenced work on the enhancement of care coordination with PCMH-Kids practices through the implementation of a structure to support youth transition to adult health care. This was initiated via a “Call for Applications” to offer pediatric and adult practices the opportunity to apply for funding to participate in the “Health Care Transfer of Care” quality improvement initiative. The proposal model utilized dyad teams of a pediatric practice and an adult practice team to receive training, support, and technical assistance for Transition Program development and implementation. The program components of the RIDOH and CTC-RI collaborative initiative included: infrastructure and incentive payments; on-site practice quality improvement coaching; peer learning collaborative opportunities; and national technical assistance (through Got Transition National Alliance to Advance Adolescent Health).

A key component of the pilot initiative was the engagement of subject matter experts on transition from Got Transition/ National Alliance to Advance Adolescent Health to build transition capacity in Rhode Island by guiding implementation of the well-tested Got Transition Six Core Elements. This approach contributed to the development/implementation of a more intentional and structured approach to the transfer of care process. Got Transition’s expertise also provided RI with consultation regarding engaging Medicaid and health plan officials on HCT payment incentives.

During the 2021-2022 contract period, dyad teams were successful in building partnerships between pediatric and adult practices, implementing an adolescent healthcare transition process model for system incorporation, and building a momentum to move the needle on what has been a critical issue and challenge both at the state and national level.  During the next reporting period (2022-2023), the RIDOH and the CTC will build on the success of the initial Health Care Transition Pilot facilitated during the last reporting period to offer another application opportunity for the next cohort of RI practice dyads. The new pilot will also provide a vehicle for initial project pediatric or adult practices to continue transfer efforts (with a new or existing dyad partner) and expand on their practice transition structure to include an increased number of youths including those with complex medical conditions.

Additionally, in support of the RIDOH goal to improve care coordination services for children with special needs, the CTC-RI/PCMH will partner to provide Nurse Care Manager/Care Coordination (NCM/CC) workforce development training opportunities using the Glean Core Curriculum Training Educational Platform. For both the Health Transfer of Care Quality Improvement Imitative and the Nurse Care Manager/Care Coordinator workforce development training opportunity, CTC-RI/PCMH Kids, in collaboration with RIDOH, will develop a CYSHCN Care Coordination Assessment Survey that seeks to understand from the NCM/CC the care coordination processes and resources they are using to meet the needs of this population. Such assessment findings will be utilized to inform policy and develop additional training opportunities to improve care coordination services and resources.

Project Leads (CTC, PCMH-Kids, and RIDOH) will continue to work with health plans and Medicaid to address payment and sustainability of Health Care Transition services. The RIDOH, OSN will continue to provide contract management, technical support, and connections with other relevant partners (Medicaid, Health Plans etc.) to ensure successful implementation of initiatives in support of CYSHCN and their families.

Encourage a PCMH-Kids' System of Health Care for CYSHCN: The PCMH-Kids System of Health Care for CYSHCN model, convened in 2013, extended the transformation of primary care to practices that serve this population across the State of Rhode Island. The RI Department of Health was a participant in the development along with project partners including: RI’s major health plans; RI American Academy of Pediatrics (RIAAP); Executive Office of Health and Human Services (EOHHS); and the Care Transformation Collaborative (CTC). Together these partners work to engage providers, payers, patients, parents, and policy makers to develop high quality patient-centered medical homes for CYSHCN and their families. These certified medical homes provide a vehicle for the implementation of a multitude of healthcare improvement initiatives that impact health outcomes for CYSHCN.

Continue the Dare to Dream (D2D) Youth Leadership Initiative/Conference: During May of 2009, the RIDOH Department of Health in collaboration with the RI Transition Council sponsored the first statewide youth leadership conference entitled “Dare to Dream” (D2D). Modeled after the Dare to Dream initiative developed by the State of New Jersey, the goal of the conference was to provide a forum for Middle and High School (including those with special needs/disabilities) to begin to explore transition from school to adult life and develop self‐determination and self‐advocacy skills. Held on a college campus within the State of RI, the student-led leadership conference provided youth with a forum for skill building through peer led workshops addressing topics of relevance to adolescent self-advocacy, transition to adulthood, and workforce development.

Since that time, the RIDOH in collaboration partner state agencies: RI Office of Rehabilitation Services (ORS) and the RI Department of Education (RIDE) have continued to launch the Dare to Dream Initiative/Youth Conference annually during the Spring at the University of Rhode Island. Typically, the conference hosts over 400 students and 150 teachers/support staff from approximately 45 different schools. The conference agenda has evolved to provide youth programming to address social emotional health, exploration of personal strengths, and tools for resiliency.

During the 2020/2021 academic school year, due to the COVID-19 pandemic, D2D was re-designed to continue to provide RI Middle and High School students with the youth conference in a virtual format. The RI Department of Health, with the continued support of its state partners, re-designed the conference in a virtual format (Virtual D2D 2.0) with tremendous success. The conference programming, attended by 546 RI Middle and High School students, focused on social/emotional health through the facilitation of student strengths-finder assessments and virtual workshop programming delivered in partnership with University of Rhode Island Center for Student Leadership Development and a National Training Agency entitled Leading to Change, Inc. Workshops provided by the two entities were able to accommodate students attending in-person and virtual school throughout the academic school year. The development of a unique D2D website provided teachers with the ability to participate in either real time or when available. Additional workshop resources and activities were posted following each workshop to provide topic enhancements.

During the 2021/2022 period, planning was underway for the facilitation of D2D Spring in-person Conference, when due to the continued COVID -19 environment, the RIDOH/State Partners again developed a conference re-design to continue to provide RI’s Middle and High School students with D2D. In accomplishment, the virtual program agenda facilitated a Fall Kick-off event, 2 school year workshops, and an end of the year closing zoom event televised from the same RI University campus. Once again, the successful year’s event program that addressed community network connections and support system building for the future was attended by over 250 Middle and High School students and their teachers across the state of RI.

During the next reporting period (2020/2023), the RIDOH will again partner with the RI Departments of Education and Rehabilitation Services to continue to bring the D2D experience to RI Middle and High School students and their teachers to provide creative programming that address: social/emotional health, tools for resiliency, individual strengths recognition, and other topics related to transition to adulthood.

• Support and Enhance the Medical Home Portal: RIDOH has developed web-based resources (www.ri.medicalhomeportal.org (MHP) to provide a consumer-friendly way to navigate the CYSHCN System of Care.  The website provides a one-stop-shop for comprehensive diagnostic, education, specialty care, social service, and resource information to improve the system of care and health outcomes for CYSHCN. The MHP addresses specific informational areas for: Diagnosis and Conditions; Physicians and Professionals; and Parents and Families. The MHP was developed in 2016 through a partnership between the RIDOH and the University of Utah and has been an on-going contractual collaboration since to build the RI Resource component of the portal directory that includes state specific provider and service information. As of May 2022, the number of listings in the RI Service directory was 970.
  

The RIDOH convenes an Advisory Committee composed of families, partner state agencies, community stakeholders, health professionals, and advocates to provide guidance and oversight of the MHP. In addition to the Advisory Committee, the RIDOH also participates as a member of the Medical Home Portal‘s State Partners’ Advisory Board to ensure content integrity, an improved avenue for resource navigation, and a mechanism for user feedback/utilization tracking. 

Resulting from the 2020 pandemic crisis, a COVID-19 Section was incorporated into the MHP to share vetted information on health insurance, safety guidelines, community supports, and tools to help families and professionals caring for CYSHCN. In response to the limits of in person outreach fairs, other outreach efforts were explored. A short video pitching the MHP as a tool for families was recorded and promoted by RIPIN and Family Voices and also available in Spanish. A video promoting using the MHP for professionals is complete and features testimonials from 3 community partners. RI Leadership Education in Neurodevelopmental and Related Disabilities (LEND) project participant to improve the information available to families about post-secondary college transition programs.

The past grant reporting period showed a dramatic increase in users among families and professionals and has been visited over 38,000 times. Data collection is captured through google analytics for quarterly reporting on the number of users, type of device used, and top twenty (20) viewed pages and state locations. There is also a report that identifies the number and name of outside links that are initiated at the MHP site. This can be used as a proxy for a higher level of consumer engagement. A brief customer satisfaction survey has been added to the site. 

CYSHCN and Health Equity Zones
During the reporting period, the Health Equity Zones worked with their communities on further integration of family voices and perspectives in the Health Equity Zone planning efforts. The RIDOH contracted with RIPIN to support a quality system of care for CYSHCN and their families within the communities, as well as on a statewide level. This effort included fostering community connections to provide education, resources, and support to address system barriers and gaps at the local level. See below for further activities of HEZs collaborating on activities meant to support overall system of care coordination.

Continue Educational Workshops on Child Developmental Disabilities:

• Convene the MCH/HEZ Learning Classroom: The HEZ MCH Learning Classroom is an interactive educational space created to educate Health Equity Zones on Maternal Child Health issues across all six domains. The Maternal Child Health Program has put together a list of speakers from both the community and RIDOH to attend our bi-monthly meetings and educate the group on the initiatives they implement. Each HEZ must send a representative to consistently attend the learning classroom meetings. The learning classroom will move into its 2nd year of programming in October 2022.

• Woonsocket HEZ: Woonsocket HEZ partnered with The Autism Project to offer a series of workshops for parents/caregivers, educators, and childcare providers of children between birth to age 5. These workshops trained participants to recognize potential indicators of autism or other developmental disabilities, provided best practices for caring for children with disabilities, and connected children to appropriate resources to support their development. These trainings allow for the early screening and diagnosis for developmental disabilities, and early connection to services, thus reducing delayed care for children with special healthcare needs.

• Central Providence HEZ: In 2020, the Central Providence HEZ and the Autism Project, carried out programming to support children and their families. The Autism Project consulted local agencies to support children and families, as well as offered 10 hours of Conscious Discipline training for parents and caregivers, presented in both English and Spanish.

Other Programs/Initiatives Related CYSHCNs

Governor’s Commission on Disabilities Annual Public Forums: The Governor’s Commission on Disabilities (GCD) was designated by law in Rhode Island in 1992 as the agency with the responsibility for state government compliance with the ADA and all other state/federal laws protecting the rights of people with disabilities. In 2003, the Commission assumed the responsibility to investigate complaints of discrimination based on disability, allegedly caused by physical inaccessibility of facilities. On an annual basis, the Commission also conducts public forums on the concerns of people with disabilities and their families. The forums, held through the state, have led to a broader legislative agenda and highlighted the fact that individuals with disabilities often need services from multiple agencies at the same time. Testimony is documented for submission to state policy makers and planners to address current service status, unmet needs, and suggestions for systems improvement and expanding opportunities. The RI Department of Health (RIDOH) and other state agencies participate in the annual forums which have resulted in significant policy and systems changes throughout the years.

During the last reporting period, the RI Department of Health, Office of Special Needs participated as a Commission member to represent children and youth with special needs and their families. Included in this role is the collaboration with other representatives from state agencies and community stakeholders to address the impact of proposed state legislation that impacts all individuals with disabilities on an annual basis. Members also respond to issues around accessibility that creates barriers to independent living and quality of life on an on-going basis.

During the next reporting period, the RI Department of Health, Office of Special Needs will continue to participate on the Governor’s Commission on Disabilities to represent children and youth with special needs and their families. Included in this role will be participation on the GCD Legislative and Accessibility Committees to address equity and accessibility issues that impact all individuals with disabilities and their families.

New England Regional Genetic Network (NERGN): RIDOH contracts with RIPIN to support families of children with rare genetic conditions to increase awareness of available services and supports. RIPIN, as a member of the New England Regional Genetics Network (NERGN), serves as a conduit to share information and research quarterly along with 5 other Family Voices organizations in New England and NERGN staff. In their role, RIPIN assists children or youth diagnosed with genetic conditions with identifying physicians and provides families and professionals with resources and information.

During the last reporting period, the RI Department of Health continued to contract with RIPIN Family Voices to support families of children with rare genetic conditions to increase awareness of available services and supports. Through this partnership, RIPIN assisted 22 families with children or youth diagnosed with genetic conditions to identify medical and community supports in RI. In addition, over 500 families and professionals were provided with resources/information regarding how to navigate services and connect to others with genetic conditions. The RI Department of Health will continue to contract with RIPIN during the next reporting period to ensure families of children and youth with rare genetic conditions are connected to needed service and supports.

Supporting a comprehensive system of family leadership: To ensure that families of children with special health care needs are participating at all levels of decision-making and ensure access to comprehensive health and related services, RIDOH supports the following programs:

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.