CT’s coordinated system of care for Children and Youth with Special Health Care Needs and their families, the CT Medical Home Initiative (CMHI) for CYSHCN, provides community-based, culturally competent care coordination and family support services to more than 8,400 CYSHCN in collaboration with 86 community based Medical Homes (MH) including: community health centers, hospital clinics, pediatric and family practices. CMHI care coordination network contractors included: CT Children’s Medical Center (North Central CT), St. Mary’s Hospital (Northwest), Stamford Health System (Southwest), Family Centered Services (South Central), and United Community and Family Services (Eastern).

CT DPH released funding through a five-year RFP that had three separate components that all are involved with the CMHI. The three components included Care Coordination services, Family Professional Partnerships, and the Respite and Extended Service Funds program. The Care Coordination program provides culturally sensitive, developmentally appropriate, statewide services in community based pediatric practice settings for CYSHCN determined to be eligible under the CT CYSHCN program guidelines. These contractors work with medical home providers, the inclusion of protective factors within the framework of pediatric and other services, integration of behavioral health with primary care, and measuring progress via social networking tools. The five contractors also coordinate regional collaborative meetings. These Collaborative meetings provide a way to identify what gaps in services are happening throughout the state. Contractors will focus on reaching out to organizations in their communities to increase the number of partner organizations in their Collaboratives, including providers from Federally Qualified Health Centers (FQHC) and School Based Health Centers (SBHC).

Funding provided through the Family Professional Partnership Services component of the RFP ensures that DPH will continue to provide statewide outreach and culturally effective education encounters for families on the medical home concept for CYSHCN including information regarding accessing community service systems and self-advocacy.

Funding provided through the Respite and Extended Service Funds component of the RFP, which is all state funds, ensures that the awarded contractor will implement and maintain a program to manage respite and extended service funds for children/families deemed eligible for the CYSHCN program.  The contractor issues payments to providers who furnish services and provides assistance to consumers in accessing health financing resources from all available sources. It also provides assistance to eligible consumers in accessing available respite funding and service providers.

The CT Title V Program for CYSHCN has been involved with the North Central Care Coordination Collaborative (NCCCC), since its inception. NCCCC and its partners are vital in maintaining and sharing information, resources and services available to families and disseminating information to families and providers. NCCCC meetings focus on: expanding knowledge of available services; reducing barriers to resource coordination, interagency communication, and securing appropriate services in a timely manner. Family-specific interagency approaches are developed to promote accessibility across programs. Members from across the spectrum participate including medical and behavioral care providers, state and private agencies, medical/legal advocates, Healthcare for UninSured Kids and Youth (HUSKY), CMHI Care Coordinators, information/referral coordinators. Care Collaboratives are an effective vehicle in reducing duplication of services; ACA implementation; and MCH National Performance Measure progress.

Community Care Coordination (CCC) Collaboratives are uniquely positioned to work on both the individual and policy or system level. On the individual level, these Collaboratives focus on families seeking assistance and the care coordinators who work with them. The goal on this level is to maximize the use of available, appropriate and affordable services for children and their families. Collaboratives achieve this goal by clarifying referral processes; coordinating the services available from collaborative members, documenting activities both during and between meetings; and collecting data that document collaborative efforts and the results of those efforts.  This work helps the Collaborative identify policy and/or systems issues that make it difficult for families to obtain the services and support needed and for care coordinators to help them. This information can influence decisions made by program administrators, legislators, state agencies, advocates, and funders. The goal on the systems-level is to change systems and policies so that families can easily obtain needed services.

The CCC Collaboratives serve as resources for the DSS Person-Centered Medical Home (PCMH) program based on the NCQA PCMH model. Participation includes PCMH Community Practice Transformation Specialists (CPTS) and Intensive Care Management (ICM) Nurses and Community Workers who are organized under Community Health Network of CT (CHNCT) – CT’s Medical Administrative Services Organization (ASO) for the HUSKY Health Program.

Continued expansion of the Collaboratives which support local medical home providers and care coordinators to access state and local resources, as well as serving to resolve case specific and systemic problems (including reduction in duplicity of efforts) have moved forward, with improvement in both expansion and quality. The Collaboratives range from meeting in their regions bimonthly to quarterly with some of the regions hosting electronic meetings for their group. The Collaborative meetings hosted speakers that highlighted a wide range of topics as they related to CYSHCN such as the following: transition, poverty, youth sex trafficking, respite and extender service funds in Connecticut, and different behavioral health agencies in specific regions. These meetings also are a time where care coordinators can discuss some complex medical needs cases to help link to other services in the community. 

During this federal year, DPH and the Office of Early Childhood worked together on the integration of CMHI Care Coordination Collaboratives and Help Me Grow Community Collaboratives. Each CMHI region has a specific OEC staff member identified to help this new collaboration. This integration will focus on improving communication, reviewing and improving data collection and sharing resources.

Care coordinators for each region provide a variety of services for CYSHCN in Connecticut. Some care coordinators are embedded in pediatric practices while others spend time working to engage new practices with medical home and provide ongoing engagement with other involved practices. Care coordinators help families get appointment with specialists including dental services, acquire transportation to appointments, get respite funds, and facilitate insurance coverage for services. The coordinators help each family prioritize the specific needs, link them to support groups and food pantries if necessary in the area, help set up home therapy, and help with any difficulties or confusion the families might be having in getting services at school, including attending meetings at the school to help set up 504 plans.

The CMHI meets periodically in different areas of the state for an opportunity for all the contractors and care coordinators funded by the MCHBG and the state of CT to come together to discuss the needs and successes in their region.  In FFY19, we had speakers that discussed refugees and immigrants in Connecticut and their needs as well as legal terminology associated with the different statuses. The CT Department of Social Services provided information about the Fatherhood Initiative in Connecticut, the CT Department of Developmental Services gave a presentation on changes they had and how best to serve our CYSHCN to link them to that agency, and a speech pathology group that provides services in several regions in the state provided information about how aquatic therapy is helping CYSHCN in Connecticut.

The DPH Medical Home Advisory Council (MHAC), comprised of more than 40 representatives including state and private agencies, community-based organizations, the state’s Medicaid Administrative Service Organizations (ASOs) and parents/caregivers of CYSHCN, provides guidance to DPH and its partners in their efforts to improve the system of care for CYSHCN. The MHAC remains DPH’s chief vehicle for collaborating with state/regional/local agencies to organize easily accessible community-based service systems and maximize linkages with professionals and family organizations. Groups collaborate with MHAC and CMHI to develop and organize universally accessible community-based service systems and maximize linkages for their populations. This year was the MHAC meetings were active with in depth conversations and presentations about programs in Connecticut such as the Pregnancy Risk Assessment Monitoring System, Bridgeport Prospers Baby Bundle Initiative, HUSKY Medical Transportation provided by Veyo, New Haven Fatherhood Initiative, Early Hearing Detection and Intervention Program, and the State Health Assessment.

DPH partners with organizations serving CYSHCN, including legislatively mandated and other councils, e.g. the Medical Assistance Program Oversight Council, CT Interagency Birth-to-Three Coordination Council, State Department of Education Bureau of Special Education Transition Task Force, Autism Spectrum Disorder Advisory Council, A.J. Pappanikou University Center for Excellence in Developmental Disabilities Consumer Advisory Council, CT Council on Developmental Disabilities, Maternal Infant and Child Health Coalition, and Sickle Cell Disease Consortium. CMHI access information is distributed among these partners.

Child Health and Development Institute (CHDI) and the CT Family Support Network (CFSN) provided statewide outreach and culturally effective education encounters for families on the medical home concept for CYSHCN including information regarding accessing community service systems and self-advocacy. This included hosting multiple social media pages and groups specific to different needs, such as a Facebook groups for Spanish speaking parents/caregivers of CYSHCN, parents/caregivers of CYSHCN with potty training difficulties or special diets, or parents/caregivers of CYSHCN for support and self-care. The different Facebook groups and pages had over 8,700 members and followers in total. Some of the groups, such as the “Special Kids of Eastern CT Support Group,” were very active with approximately 700 posts for the year, while other such as groups about potty training and special diets and nutrition had only an average of 1 or 2 new post a month.  Other forms of social media such as Twitter and Instagram had fewer followers than Facebook, with only 77 followers in total.  There are also several Google group distribution lists, with over 700 members in the statewide group, a few hundred in each of 6 regional groups, and over 50 in very specific groups related to deaf/hard-of-hearing or creative housing groups.

CHDI and FSN provided 70 training sessions for the Educating Practices program on topics such as but not limited to Autism, ADHD, and medical homes in multiple child health sites and over 90% of those practices said they would implement changes to their programs. They also held the annual One Voice Conference in March 2019, which was titled “You Are Not Alone – Navigating Our Journey Together.” This conference, for parents and caregivers of people with special health care needs, had 103 attendees and provided discussions on coping with behavioral health issues, using technology to support learning, and supporting healthy relationships.

CT Title V is committed to fostering a system that provides all youth, including youth with special health care needs, the services necessary to make successful transitions to all aspects of adult life including adult health care, work and independence. Activities are established through statewide implementation of a quality, youth-centered, and culturally competent, comprehensive, coordinated, community-based systems of services for successful YSHCN transition to all aspects of adult life. CHDI and FSN provide information on transition to parents through support groups, social media, and telephone calls. CMHI Care Coordinators in each region work with an individual YSHCN, their family/caregivers and other critically important individuals in the life of the YSHCN to develop a transition plan. A CMHI Care Coordinator meets with the YSHCN and their family/caregiver to establish three critical topics to address.  Topics may need the input and support of educators, medical providers, state agencies, insurance company case managers, local support services, vocational resources, legal resources, and recreational resources. To the greatest extent possible, the communication is directed by the YSHCN and their family with coaching from their Care Coordinator.

The transition plan is then implemented and revised as needed, including communicating with the key members of the group if necessary. To ensure sustainability, DPH has incorporated the transition meetings as a deliverable into all five CMHI Care Coordination Regional Contracts and provides leadership guidance. Each region has a Care Coordinator identified as a transition resource person. The CMHI program based at CT Children’s Medical Center (CCMC) continues to work with CCMC Transition Task Force within the hospital. This includes a transition physician champion and providers from different medical and behavioral health backgrounds who meet regularly and provide transition guidelines that providers are encouraged to follow for all adolescents.

“Moving Into Adult Health Care Guides” created by CT Kids As Self Advocates were distributed statewide. The booklets offer resources to assist young adults with or without disabilities, their parents, and their primary care providers in preparing for the YSHCN’s transfer to adult health care. The booklets are available on the DPH YSHCN webpage.