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 approximately 9,000 CYSHCN in collaboration with 83 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 awarded new funding in 2020 through a five-year RFP that had three separate components that all are involved with the CMHI. This was the first year of funding the newly developed and executed contracts to seven different contractors. 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 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, navigating insurance access, 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 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, all regions held meetings virtually. Some of the regions had already utilized electronic meetings before the pandemic started.  The Collaborative meetings hosted speakers that highlighted a wide range of topics as they related to CYSHCN such as the following: early psychosis basics training, palliative care, disability rights with a focus on housing, youth suicide prevention, ADHD, intimate partner violence, food insecurity, education during a pandemic including special education and distance learning, and mental health and wellness resources and supports. 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 highlight for one of the regions this year is that the South Central Region devoted training hours and staff meetings to discuss racial equity in the workplace and in the community. They established the Racial Advocacy and Committee for Equality with a mission to promote racial equity in the workplace by consistently and thoughtfully reviewing and revising policies, procedures, and protocols to ensure that they are anti-racist and anti-oppressive and have a vision for every employee to feel equally valued, heard and respected in the workplace.

One of the goals of the CMHI is to link CYSHCN and their families to any services or providers that they need. In the 2021 contract year, CMHI Care Coordination staff in the five state regions, provided over 9,600 linkages to multiple services and providers.  Over 3,000 CYSHCN linkages were to important behavioral health services, which made up 31% of all the linkages provided. There were over 2,700 linkages with a necessary primary care physician, specialist, or dentist, which made up 29% 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 200 CYSHCN were referred by medical and dental primary care providers, which was 22% of all referrals.  Specialists referred 216 CYSHCN (20%). Community Health Centers referred almost 300 patients (28%) and hospital clinics referred 151 patients (14%).

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 FFY21, we had multiple conversations about the impact of the COVID-19 pandemic in each of the regions. This included discussions in late 2020 and during the summer of 2021 when the CMHI care coordinators were able to reflect on the successes and challenges they had over the last year.  The CMHI Care Coordinators meetings also had speakers from different community organizations including the Parents Available to Help organization.

The Connecticut Children’s Center for Care Coordination hosted a virtual care coordination conference over two days in June 2021. There were 241 participants, and the overwhelming majority of people said the content was very or extremely helpful. Presentations discussed how to help children with co-occurring complex special needs and their families, homelessness in Connecticut, the United Way ALICE report, secondary traumatic stress and compassion fatigue, using the social-ecological model to address the health of children, drug prevention and substance abuse, social determinants of health including social risk factors and needs, and how to incorporate cultural humility into clinical practice.

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. 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 such as the CT Family Support Network, the Connecticut Parent Advocacy Center which spent a great deal of time focusing on making sure CYSHCN students received needed school services during the pandemic, and the Medical Legal Partnership providing a discussion about housing and utilities protections and access to healthcare during the pandemic.

DPH continued to try to find other ways to partner with families. The DPH Title V staff along with parents in the Family Experience Workgroup attended the National MCH Workforce Development Center Skills Institute, Strengthening Skills for Health Equity programs in March 2021. The four sessions were productive in making conversations specific to Connecticut on how we can make sure we are being inclusive in our hiring practices and in promoting equity in health promotion.

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.

Child Health and Development Institute (CHDI) and 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 almost 10,000 members and followers in total, with Facebook having the highest number of followers.  The social media pages reached almost 93,000 people who can see the posts. The pages were active with over 13,000 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 50 in very specific groups related to deaf/hard-of-hearing or creative housing groups. The annual CTFSN One Voice Conference was held virtually. Topics covered disabilities in the juvenile justice system and early intervention for deaf or hard of hearing children. Recordings were posted on the CTFSN YouTube channel. The CTFSN was able to utilize its YouTube channel to post 10 videos and trainings during the year. These included topics such as toilet training for CYSHCN and car seat safety. Staff reported an increase in views and attendees at virtual trainings and support groups. During the 2020-2021 year, CTFSN worked with 1,281 professional organization, 1,045 direct family contacts, including 13 families where English was not the primary language, and held 28 support groups.  

CHDI provided 26 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. The trainings were provided on 11 different topics at 17 medical sites. There were 476 participants at these trainings. The topics covered areas such as, but not limited to, Care Coordination, Behavioral Health Screening, Suicide Prevention and ADHD.

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 will focus on the city of New Haven, with services to be provided by a mental health outpatient clinic. 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. 

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.

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 2020 to 2021 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, 2020 and September 30, 2021, 52% (409,934) 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 in late 2020 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 Federally Qualified Health Centers through Community Health Centers, Inc (CHCI) to address common, modifiable risk factors for childhood obesity and dental caries. This project also includes 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 utilize in preventive dental appointments to identify at risk children. These children are then referred to primary care or nutrition services for follow up. The dental provider conducts in chair counseling and goal setting using motivational interviewing. The project is being implemented in five sites throughout the state with the intention to be rolled out to all CHCI sites upon the conclusion of the pilot.

The CT Oral Health Surveillance System (COHSS) tracked and monitored over twenty (20) oral health indicators for children. In 2020, 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 91.6%, which was above the national percentage of 78.5%. Also in 2020, 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 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 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.