The Maternal and Child Health Bureau (MCHB) defines Children with Special Health Care 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." (mchb.hrsa.gov)  Children and youth with special health care needs (CYSHCN) are a diverse group of children, ranging from children with chronic conditions to those with more medically complex health issues, to children with behavioral or emotional conditions. Health care needs may be physical, developmental, behavioral or emotional and may manifest in children of any age. CSHCN are often diagnosed with more than one condition, and frequently experience several functional difficulties, learning or behavior problems, difficulty with gross or fine motor skills, chronic pain or difficulty in making and keeping friends. 

In RI, according to the NSCH, 21.1% of RI children ages 0-17 years have at least one special health care need, compared to 18.8% in the nation.  Among children 3-17 years old, the prevalence of ADD/ADHD is 10.3%.   It is also estimated that the current prevalence of autism, Asperger’s Disorder, or other ASD in RI is 2.7%. 

Medical Home

Several essential criteria are required to be considered a medical home.  It includes being accessible, family-centered, continuous, comprehensive, coordinated, compassionate, and culturally effective.  In RI, NSCH 2016/17 data report that 41.6% of children with special healthcare needs (CSHCN) had a medical home, compared to 51.3% of children without special health care needs. This RI CSHCN measure does not meet the Healthy People 2020 target objective of 54.8%.  Although 82.6% of all RI children received a preventive medical visit in the past year, 94.8% of CSCHN were more likely to have had a preventive medical visit compared to 83.4% of children without special health care needs population. In 2016/17, 69.4% of CSHCN are continuously and adequately insured in RI.  Also, 16.9% of CSHCN received care in a well-functioning system in RI.

Adolescent Transition

Healthcare transition is a critical component of a comprehensive medical home for CSHCN, especially when youth have complex, poly-morbid physical, developmental, and social needs.  RI NSCH 2016/17 data shows that only 15.1% of CSHCN received services necessary to make transitions to adult care compared to 15.9% of RI children without special health care needs; this is also slightly less than the national average of 16.7% for CSHCN.

Impact on Families

RI continues to study and monitor the financial impact that many families with CSCHN experience.  The NSCH 2016/17 reports that 10.1% of families with CSHCN have had problems paying for any of the child’s medical or health care bills in RI, compared to 17.3% of families with CSHCN nationwide. NSCH also reports that 14.9% 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 2.2% families of children without special health care needs in 2016/17.

•                Support the enhancement of care coordination with the PCMH-Kids practices, with emphasis on CYSHCNs.

Care Transformation Collaborative - Launched in 2008 by the Office of the Health Insurance Commissioner, the Care Transformation Collaborative of Rhode Island (CTC) formally 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 are 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 successful CTC 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.

PCMH-Kids – The Patient Centered Medical Home Kids (PCMH-Kids) project, a multi-payer, primary care payment and delivery system reform was convened in 2013 to extend the transformation of primary care to practices that serve children across Rhode Island. PCMH-Kids. The RIDOH participated in this initiative along with project partners: RI’s 4 major health plans; RI American Academy of Pediatrics (RIAAP); Executive Office of Health and Human Services (EOHHS); and the Care Transformation Collaborative (CTC) of RI to engage providers, payers, patients, parents, and policy makers to develop high quality patient-centered medical homes for this population.  During 2018- 2019, RIDOH partnered with the CTC to support continued implementation of the first and second cohorts of the PCMH-Kids and facilitation of the expanded initiative to include 17 additional practices for cohort 3. With this expansion, PCMH-Kids represents more than 50% of the children in RI and more than 80% of the state’s pediatric Medicaid population. RIDOH collaborations supported technical assistance for practice learning sessions, care coordination, practice reporting, and stakeholder meetings.

Cedar Redesign - During the summer of 2015, the Executive Office of Health and Human Services (EOHHS) underwent a transformation regarding Medicaid service delivery changes as part of the initiative - Reinventing Medicaid. These changes focused on:  1) Improving integration and coordination of care; 2) Improving outcomes for children/youth and their families; and 3) Increasing efficiency of care/coverage. The Medicaid transformation also resulted in significant changes to the existing state’s care coordination system for CYSHCN resulting in a redesign of the Cedar Program by the state Medicaid agency to improve service access/system navigation for families of CYSHCN.  With the expanded role of primary care as an element of practice transformation, care coordination became an enhanced component of the patient-centered medical home model.  This past year, Cedar partnered with CTC to address how the Cedar and PCMH-Kids practices would collaboratively address enhanced care coordination for CYSHCN – specifically, practice referral criteria for the Cedar Program. The result was a screening tool was developed to provide criteria for patient referrals to the Cedar Program for care coordination.  RIDOH also conducted a fact-finding study to access the service capacity and quality standards of the Cedar Program after the move to an in-plan managed care service. 

•                Support a comprehensive system of family leadership. 

Rhode Island Parent Information Network - The RIDOH contracts with the Rhode Island Parent Information Network (RIPIN) for services to improve system navigation and resources for CYSHCN and their families. Specific areas of support include the administration of a comprehensive resource, information, and referral system; training, education, peer support, and system navigation for CYSHCN and their families; and promotion of the values of cultural diversity, family-centered systems, and family and professional partnerships.  RIPIN is also the federally designated Family to Family (F2F) Health Information Center for the State of Rhode Island. Currently, all RIPIN employees are certified or working toward Community Health Worker certification.  

Family Voices - The RIDOH contracts with RIPIN to ensure the incorporation of family leadership through the Family Voices (FV) program. Family Voices is a national grassroots network of families representing children and youth with special health care needs, with a chapter in each state.  The Family Voices program fulfills the Title V Children with Special Needs mandate to provide opportunities for parent engagement, leadership development and policy to address the uninsured and underinsured CYSHCN.  Family representation and/or input is incorporated into the following: task forces, advisories, or councils for CSHCNs; communications development and distribution; parent and caregiver support groups; the facilitation of community outreach; and legislative policy development and 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 effecting the system of care for CSHCN.  Current members include:

• The Autism Project

• Butler Hospital- (Behavioral health)

• The Center for Autism and Related Disorders

• The Governor’s Commission on Disabilities

• Care New England Neurodevelopment Center

• Neighborhood Health Plan of RI

• Parent Support Network of RI

• Paul V. Sherlock Center on Disabilities

• RI Consortium on Autism Research and Treatment

• RI Department of Health

• RI Parent Information Network

RIDOH staff also participate in the FV Leadership Team and provide heavy input on agenda topics and planned activities.  During the past year, the group completed a strategic planning process.  A survey for CSHCN was developed and administered via community partners and social media. Survey results will be utilized by the FV Leadership Team to create a fact sheet that will inform legislative advocacy efforts to improve the quality of life for CYSHCN, to inform the Caregivers Summit agenda planned (fall of 2019) and included in the Title V MCH Needs Assessment.

Family to Family Health Information Center (F2FHIC) - 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 for Family and Professional Partnerships provides technical assistance, training, and connections to F2FHICs.  Title V dollars are utilized to provide staffing support.

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 places.  In addition to employment within the RIDOH, Peer Resource Specialists are employed throughout the CYSHCN service system, assist healthcare professionals, community stakeholders, and policy leaders in providing support to CYSHCN and their families.  RIPIN has developed and registered an apprenticeship program with 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 Resources Specialist have worked with the following RIDOH programs: Special Needs, 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 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 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. 

During the last year, FV facilitated ten (10) monthly support group meetings that engaged eight (8) new family members of CYSHCN. 

•                Support and enhance the medical home portal. 

The Medical Home Portal (MHP) - www.medicalhomeportal.org is an online resource established by RIDOH to provide comprehensive diagnostic, education, specialty care, social service, and resource information and support to improve the system of care and health outcomes for CYSHCN.  Sections of the MHP address specific areas including: Diagnosis and Conditions; Physicians and Professionals; Parents and Families; and a Services Directory.  The MHP was developed through a partnership with the University of Utah in 2016, and has been an on-going contractual collaboration since, to build the RI Resource component of the portal directory.  RIDOH worked with other state agencies and community stakeholders to import state specific provider and service information.  As of June 2019, the number of listings in the RI Service directory iss 720.  The Family to Family Help Information Center (F2FHIC) and the Autism Project assist RIDOH in keeping the resources up to date.  RIDOH convenes the MHP Advisory Committee, comprised of families, partner state agencies, community stakeholders, health professionals, and advocates to provide guidance and oversight. In addition to the local advisory committee, RIDOH also participates as a member of the Medical Home Portal ‘s state partners’ advisory board to ensure content integrity, improved avenues for resource navigation, and a mechanism for user feedback, utilization tracking and usability testing. A quality assurance project was initiated in January of 2019 to review and update pediatric specialists.  Data is also collected monthly from a google analytics report for number of users, type of device used for MHP access, top twenty (20) viewed pages, and state location. This year’s numbers increased dramatically due to the new national landing site and mechanism to select Rhode Island as your home state. The Rhode Island Medical Home Portal has been visited 4,894 times during the past year. 

Governor’s Commission on Disabilities Annual Public Forums - The Governor’s Commission on Disabilities 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 also assumed the responsibility to investigate complaints of discrimination based on disability, allegedly caused by physical inaccessibility of facilities.  The Commission conducts public forums statewide on the concerns of people with disabilities and their families during the week of the anniversary of the signing of the Americans with Disabilities Act. The forums, held through the state, have led to a broader legislative agenda and highlight 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.  RIDOH and other state agencies participated in forums held every year in July.  Forums conducted in the past few years led to the following important policy and systems changes in the disability system:

• Medicaid Managed Care option for adults with disabilities that assists families in navigating through the chronic health care systems
• Cost of living adjustment for (Medicaid) personal care attendants
• A crisis intervention service for adults with severe impairments who have been abused or assaulted by a care giver
• Comprehensive instate transitional services for individuals with traumatic brain injury;
• Accessory family dwelling unit in a single-family residence as a reasonable accommodation for family-members with disabilities in any residential area;
• A network of wheelchair accessible taxicabs, funded by the federal New Freedom Initiative;
• RI Pharmaceutical Assistance for the Elderly; co-payments to people on SSDI between 55 and 65 through the Neighborhood Opportunities Program to create more affordable and accessible housing;
• Medicaid Buy-In Program for persons with disabilities who are eligible for Medicaid allowing them to return to work while retaining Medicaid coverage
• The installation of curb cuts and/or ramps at both ends of any pedestrian crosswalk
• A community living option to all persons who have a disability and are sixty-five (65) years of age or younger in order to allow those individuals the choice to live in a less restrictive community-based environment or their own home environment
• The RI Pharmaceutical Assistance for the Elderly to include state co-payments to people on SSDI between 55 and 65
• The Secretary of State to utilize "state-of-the-art" voting technology to expand special ballot services to a wide range of voters with disabilities
• Zoning ordinances to provide standards and requirements for the review and approval of drive-through windows (of any type), including taking into account pedestrian safety and access for people with disabilities;

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.  In this role, RIPIN has become a member of NERGN which serves as conduit to share information and research.  Over the past year, RIPIN assisted 25 families with children or youth diagnosed with rare genetic conditions to identify physicians in RI and provided them with resources and information.  In May 2019, RIPIN staff members were accompanied by 2 family members at the annual NERGN Conference held in Portsmouth, NH to ensure family representation among state and national experts in the genetics field.

RIDOH Youth Internship Program - The Rhode Island Department of Health Internship Program for youth with special needs/disabilities provided internships to nine students in various Department Programs during the 2018/2019.  The RIDOH Internship Program received a Promising Practice recognition by AMCHP at the annual meeting in early 2019.  The goal of the Internship Program is to provide students with special needs/disabilities with the opportunity to practice job skills in a real work environment to prepare them for eventual transition to work and independence. Since there are many factors that impact successful employment for youth with special needs/disabilities, the RIDOH program provides students with a venue to become familiar with office norms, social behaviors, and daily work routine expectations.   This past year, an internship placement in the Traumatic Brain Injury Program for data entry into the registry database led to an extended paid summer position. 

Family Voices Integration with HEZ -  The RIDOH contracts with RIPIN to support a quality system of care for CYSHCN and their families in communities and statewide. This effort includes fostering community connections to provide education, resources, and supports to address systems barriers and gaps at the local level.  RIPIN staff collaborate with each HEZ to build partnerships among professionals and families.  RIPIN staff attend monthly collaborative meetings for each HEZ and participated in 3 HEZ statewide learning community meetings where they facilitated panel discussions that addressed education disparities, social determinants of health, and the community health worker role. RIPIN is also utilizing the HEZ collaboratives to recruit respondents for a “Children with Special Health Care Needs Caregiver Survey” that will help identify areas of needs for future policy development.