The CT Title V CYSHCN Program recognizes that CYSHCN and their families often do not receive effective care coordination and are not linked to the resources available in their communities that address their special needs and allow them to participate fully in public life. Programmatic strategies emphasize promotion of a medical home model of services, expansion of care coordination resources, integration of primary care and behavioral health, integration of care coordination efforts with an ideal of shared coordination across sectors and providers serving CYSHCN, and promotion of Family and Professional Partnership.

CT’s coordinated system of care for CYSHCNs and their families, the CT Medical Home Initiative (CMHI) for CYSHCN, provided community-based, culturally competent care coordination and family support services to over 9,200 CYSHCN in collaboration with 95 community based Medical Homes (MH) including: community health centers, hospital clinics, pediatric and family practices. CMHI care coordination network contractors included: Connecticut Children’s (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 continued to fund seven different contracts with a mixture of state and MCHBG funds that had been awarded through a five-year RFP with the CMHI. This was the second year of funding in this contract cycle for 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 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).

The Family Professional Partnership contract funding 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, navigating insurance access, and self-advocacy.

The Respite and Extended Service Funds contract, which is all state funds, ensures that the 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 working with contractors to support Community Care Coordination Collaboratives (CCC) in each region.  Care Coordination Collaboratives members are vital to maintaining and sharing information, resources, and services available to families, and disseminating information to families and providers. 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 and MCH National Performance Measure progress.

Care Coordination 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 Collaboratives serve as resources for the DSS Person-Centered Medical Home (PCMH) program based on the National Committee for Quality Assurance (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. As a result of the continued COVID-19 pandemic, many regions continued to hold meetings virtually. Virtual meetings were productive and many people were able to attend. The Collaborative meetings hosted speakers that highlighted a wide range of topics as they related to CYSHCN such as the following: asthma, immigration in Connecticut, school avoidance and best practices for intervention, education law and advocacy, marijuana laws in Connecticut, the emergency room crisis in Connecticut, and school mental health. Some meetings were also of different state agencies or community organizations in their region that could help families. 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. 

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 coordination activities included assessment, care planning, family advocacy, linkage to specialists, dental services and community-based resources, coordination of health financing resources, coordination with school-based services, chronic disease management, integration with behavioral health, provider and family education, provider outreach including dental providers, family support, and transition planning.   They continued to help families get appointments with specialists including dental services, acquire transportation to appointments, get respite funds, and facilitate insurance coverage for services; they also helped families navigate accessing services virtually and helping direct families to aid for virtual learning as a result of the continued pandemic. The coordinators helped each family prioritize the specific needs, linked them to support groups virtual groups because of the pandemic) and food pantries in the area, helped set up home therapy, and helped with any difficulties or confusion the families might be having in getting services at school, including attending meetings with the school to help set up 504 plans.

One of the goals of the CMHI is to link CYSHCN and their families to any services or providers that they need. In the 2022 contract year, CMHI Care Coordination staff in the five state regions, provided over 8,100 linkages to multiple services and providers.  Over 2,400 CYSHCN linkages were to important behavioral health services, which made up 30% of all the linkages provided. There were over 2,800 linkages with a necessary primary care physician, specialist, or dentist, which made up 26% of all linkages. Families were also helped by linking them with respite services, other state agencies, insurance providers, community organizations, legal services, and educational services.

Several different organizations and providers recognize the value of the CT Medical Home Initiative. This is evident from the number of referrals to the program throughout the state. Over 150 CYSHCN were referred by medical and dental primary care providers, which was 18% of all referrals.  Specialists referred 194 CYSHCN (23%). Community Health Centers referred 300 patients (35%) and hospital clinics referred 92 patients (11%).

The CMHI meets periodically in different areas of the state and virtually 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 FFY22, we had multiple conversations about the continued impact of the COVID-19 pandemic in each of the regions. This included discussions to reflect on the successes and challenges they had over the last year. The meetings are also a time for each region to talk about what is happening in their region, brainstorm for helpful ideas, and hear presentations on community organizations in the state, and topics such as anti-racism and self-directed violence.  

The Connecticut Children’s Center for Care Coordination hosted a virtual care coordination conference in June 2022. There were 260 participants, and the overwhelming majority of people said the content was very or extremely helpful. The conference was about renewing connections and reviving our statewide purpose. Presentations discussed how to define your sense of purpose in your work, triaging psychological trauma, the power of inclusion and belonging relating to health equity, school and medical provider partnerships, and a presentation from a local project focused on designing a pre-natal through career pipeline to help children and families reach their full potential.

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 Family Experience Workgroup is comprised of some Title V staff and parents/caregivers of CYSHCN. It worked throughout the year to develop, promote, and hold virtual focus groups in April with families throughout Connecticut about their needs related to medical, dental, and behavioral health services. Families are paid a stipend for participation. The Family Experience Workgroup participants provided updates at every MHAC meeting. The MHAC remains DPH’s chief vehicle for collaborating with state/regional/local agencies to organize easily accessible community-based service systems, identify gaps in medical and dental services, 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 the virtual MHAC meetings were active with in depth conversations and presentations about programs in Connecticut and topics such as how to access statewide data from 211 Counts, raising resilient kids, and the Healthcare Benchmark Initiative.  

DPH partnered 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, 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, Help Me Grow Advisory, and Sickle Cell Disease Consortium. CMHI access information is distributed among these partners.

The CT Family Support Network (CTFSN) provided statewide outreach and culturally effective education encounters for families on the medical home concept for CYSHCN including information regarding accessing community service systems, navigating insurance access, and self-advocacy. This included CTFSN 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 who are deaf or hard of hearing and building a supportive community.  The social media groups and pages had over 10,000 members and followers in total, with Facebook having the highest number of followers.  The social media pages reached around 78,000 people who can see the posts. The pages were active with over 10,100 post engagements in the forms of reactions, comments, shares, and clicks of links. There were 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 60 each in very specific groups related to deaf/hard-of-hearing, Spanish speaking specific, or creative housing groups. As a result of the continued COVID-19 pandemic, CTFSN held four smaller One Voice conferences in different areas of the state instead of one larger conference. Conferences were held in both English and Spanish. The main theme for the conferences was “Tools for a Good Life: Assessing, Planning, and Implementing.” The CTFSN was able to utilize its YouTube channel to post 22 videos and trainings during the year. These included topics such as toilet training for CYSHCN, dental health, mental health, self-advocating, transitioning from Birth to Three to Preschool Special Education, and transitioning from high school to career.  There were also multiple interviews with people that have autism and are advocates and CTFSN that were posted on the YouTube channel.  During the 2021-2022 year, CTFSN worked with 156 professional organization, 2,180 direct family contacts, including 13 families where English was not the primary language, and held 9 different support groups each month. Four of the support groups are held in Spanish, and five of the support groups are held in English.  

Connecticut Children’s, the new contractor for the Educating Practices Program, provided 7 training sessions for the Educating Practices Program. The Educating Practices program provides pediatricians with timely, evidence-based clinical information and office tools, and helps them connect to community and state resources so they are able to implement practice changes. This was a decrease from the previous year because the previous provider of these trainings would no longer continue hosting the program and DPH added these duties to the contract we have with Connecticut Children’s. These training courses were all held in the last three months of the contract period. The training courses were hosted at 5 different medical sites. There were 71 participants at these training courses.  

Community partners, including Child Development Infoline staff, were involved with highlighting the importance of developmental screening through workshops and webinars throughout Connecticut, aimed at giving information and support to providers such as home visitors, pediatricians, preschool programs, and kindergarten readiness programs to provide screenings such as Ages and Stages Questionnaire and the Sparkler App. The meetings and webinars focused on individualized resources and needs of the communities to ensure the success of all young children through promotion, developmental awareness, and the power of community connections.

CT 2-1-1 currently has an interactive ALICE (Asset Limited, Income Constrained, Employed) web tool available and an online database for families to search for resources by their community. CT 2-1-1 also provides a yearly ALICE report to DPH which gives data by 15 service regions in Connecticut.  DPH worked with CT 2-1-1 on their Navigator Benefits Screener which is an anonymous tool that allows a person to answer a question to generate a list of some state and federal assistance programs that could be of help, what they may qualify for, and how to apply for them.  CT 2-1-1 worked with DPH and community providers to make sure that all the CT 2-1-1 databases stay up to date for individuals and families to access information on a variety of services such as employment assistance, transportation, housing, utilities, mental health services, COVID-19 resources, and basic needs. DPH also worked with them to provide training to community partners on generating resource lists for families of children, including CYSHCN. As a result of the large increase in web-based searches and calls to 2-1-1 from the COVID-19 pandemic, we worked with CT 2-1-1 Child Development Infoline to monitor and respond to the community needs.  

DPH staff also worked with design phase of the Integrated Care for Kids (InCK) grant to improve child health outcomes, reduce avoidable out of home placement and inpatient stays and create sustainable alternative payment models to support provider accountability for cost and quality outcomes. The Connecticut grant focused on the city of New Haven. The goal is to increase access to services and reduce disparities in health outcomes for Medicaid and CHIP-enrolled children up to age 21, as well as pregnant women by providing comprehensive screenings and assigning children to a service integration level that is based on the screening results. Children, including CYSHCN and their families will receive culturally and linguistically appropriate support, including scheduling and transportation assistance and connections to community resources. During the 2021-2022 period, providers and care coordinators were engaged and enrolled into the program and provided with training.

Title V staff attended meetings with the National Catalyst Center on NPM #15 to improve financing of care and health insurance coverage for CYSHCN. The Catalyst Center will help staff identify innovative strategies to help finance services and improve reimbursement for services used by CYSHCN. There is a focus on continued access to telemedicine as a result of the COVID-19 pandemic and working with those negatively impacted because of lack of access to computers. The Catalyst Center is a Health Resources and Services Administration funded National Center on insurance access.

DPH Title V staff joined the Access Mental Health Expansion Advisory Group in Connecticut. The Access Mental Health program provides real-time psychiatric consultation, care coordination, and education to PCPs across the state, regardless of insurance. Connecticut is expanding these services for the age 19 to 21 group because current data and feedback shows that PCPs are looking for medication consultation and care coordination for that age group. The CT Department of Children and Families received a federal grant for this project. This was the first year of the expansion grant. A total of 418 providers contacted the program at least one time during this reporting year. This program served 2,217 children and adolescents, with 197 of those being in the 19 to 21 age range.

The Office of Oral Health (OOH) serves as one of the primary sources of oral health information for CT residents. The OOH promoted the importance of having a dental home through resources posted on the website, federally funded grant programs, and community and inter-agency partnerships. The OOH website serves as a hub of information for multiple stakeholders such as parents, providers, and others to obtain national and state resources, oral health data, and information on access to care. The website provides residents with a variety of options to find care and establish a dental home.

The OOH continued to collaborate with and strengthen community partnerships to address oral health needs throughout the state. The Connecticut Dental Health Partnership (CTDHP) provided management and customer service for the dental benefits portion of HUSKY Health. CTDHP supported eligible members to find a dental home, make appointments, coordinate transportation, and locating dental homes for individuals with special healthcare needs. OOH regularly met with CTDHP to align our efforts where possible and to be aware of each other’s work to identify opportunities to partner.

The OOH participated in statewide oral health committees and advisories, such as the Connecticut Oral Health Initiative’s Advocacy Committee and the CT Dental Health Partnership’s Dental Policy Advisory Committee, where there were opportunities to continue to promote dental homes and medical dental integration, specifically medical staff applying dental sealants in pediatric settings during well-child visits. The goal being to reduce extra visits, reduce transportation barriers, assist families in finding a dental home, and facilitate partnership between medical and dental providers as part of overall wellness.

In the 2021 to 2022 FFY, the OOH, in collaboration with CTDHP and the Department of Social Services established a data definition to capture the count of Medicaid Dental Homes in Connecticut. This is defined as the % of continuously eligible Medicaid children 0-21 years old, who had a periodic or comprehensive evaluation or child prophylaxis (cleaning) claim in a designated time period. Between October 1, 2021 and September 30, 2022, 56.9% (374,702) of continuously eligible Medicaid children had a dental home. There were 583 unique provider dental homes.

The OOH also facilitated a Medical Dental Integration Advisory to provide guidance and technical assistance to the Medical Dental Integration Project (MDIP) and ensure sustainability once the project is over. The purpose of the MDIP is to work with Community Health Centers, Inc (CHCI) to address common, modifiable risk factors for childhood obesity and dental caries. This project also included a bidirectional referral component where pediatric patients who do not have a dental home or are overdue for regular preventive dental care are identified in medical settings and referred to dental. For this project, the OOH developed a Nutrition and Oral Health Toolkit for Dental Providers, which included a nutrition and oral health assessment that dental providers utilized in preventive dental appointments to identify at risk children. These children were then referred to primary care or nutrition services for follow up. The dental provider conducted in-chair counseling and goal setting using motivational interviewing. The project was implemented in five sites throughout the state and was rolled out to all CHCI sites upon the conclusion of the pilot in September 2022.

The CT Oral Health Surveillance System (COHSS) tracked and monitored over twenty (20) oral health indicators for children. In 2021, per the National Survey of Children’s Health, CT’s percentage of “dental visits among children aged 1-17 years with special health care needs” was 89.5%, which was above the national percentage of 83.1%. Connecticut’s percentage of “preventive dental care visits among children aged 1-17 years with special health care needs” was 85.7, which was above the national average of 79.4% Also in 2021, per CMS-416, for “preventive dental visit among children at 1-20 years enrolled in Medicaid/SCHIP,” CT’s was at 49.8%.

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. CTFSN provides 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 contracts and provides leadership guidance. Each region has a Care Coordinator identified as a transition resource person. The CMHI program based at Connecticut Children’s continues to work with the Connecticut Children’s 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.