Delaware estimates a population size of Children and Youth with Special Health Care Needs (CYSHCN) of 28,493.  According to the 2019-2020 National Survey of Children’s Health (NSCH), 67.2% of Delaware children are adequately insured in comparison to the national average of 66.7%.  This includes CYSHCN between the ages of 0 through 17.

In Delaware’s Title V/Title XIX Memorandum of Understanding (MOU) it charges us to  establish the Cross-Agency Coordination Committee with our Medicaid partners.  However, the Title V Director, Title V Deputy Director have monthly meetings with Medicaid to discuss pressing MCH issues and opportunities.  We are not actively pursuing the development of a coordination committee at this time.  Our Medicaid partners are also attending MCH meetings such the DHMIC and Doula committee meetings.  Medicaid and the Division of Public Health (DPH) sees their participation in community meetings with us as a fantastic opportunity to align quality improvement efforts with Title V MCH priorities to improve health outcomes for women, babies and CYSHCN. 

In Year three, Delaware will utilize Family Support Healthcare Alliance Delaware (SHADE) programmatic approach to extend family and professional partnerships at all levels of decision making, to best serve our Children and Youth with Special Health Care Needs (CYSHCN) and their families.  Family SHADE will serve as a learning network and respected resource for the community serving CYSHCN.  Families will be included in all levels of planning, implementation, and evaluation of CYSHCN programs and promoting positive systems change to best serve families of CYSHCN.  Our new vendor Parent Information Center (PIC) which we contracted with in October of 2021 will implement the newly revitalized Family SHADE project by executing competitive mini-grant opportunities and implement Learning Communities to families and organizations that serve CYSHCN.  The Learning Communities will provide these organizations with the tools to build capacity as well as strategically serve CYSHCN through community-based organizations.  PIC will prioritize aligning the Learning Communities with the Maternal Child Health (MCH) national performance measures (NPM) as well as topics addressing gaps in service and identified needs that are impacting families of CYSHCN.  Through these initiatives, the Family SHADE project will build state and local capacity and test small scale innovative strategies to improve the overall systems of care.  PIC in partnership with community organizations will focus on innovative strategies and improving the Title V national performance measures and support the implementation of the standards for systems of care for CYSHCN through measurable outcomes.  PIC will routinely take surveys to track and gather information and topics being requested by Family SHADE community by taking pre, post, and overall evaluation surveys during focused learning communities.    

Through the Family SHADE project two community-based organizations were awarded mini-grants.  Jay’s House and Tomaro’s C.H.A.N.G.E. (Creating healing, answers, & necessary guidance for excellence) were awarded mini-grants in April of 2022 in the amount of 25,000.00 each.  As we move forward in revitalizing The Family SHADE project, we will focus on providing these two community agencies technical assistance on implementation and evaluation of their project so that they are aligned with the Maternal Child Health (MCH) national performance measures (NPMs) 11, 12, and 15 which are:

• NPM 11 -Percent of children with and without special health care needs, ages 0-17, who have a medical home.
• NPM 12 -To increase the percent of adolescent with and without special health care needs who have received the services necessary to make transitions to adult health care.
• NPM 15 -Percent of children, ages 0-17, who are continuously and adequately insured.   

As we move into year 2023, Jay’s House will continue to develop an implementation plan and an evaluation plan with the technical assistance of the PIC team and through the Family SHADE project.  The first year of the execution of the mini-grantees project will consist of receiving technical assistance through the Learning Communities offered by the Family SHADE project.  The scope of work will include the recruitment and retention of children and families in the Wilmington area specifically Edgemoor, Delaware which includes the following zipcodes:19802,19809,19720, 19803, 19703. Through relationship building, partnerships and referrals for CYSHCN; Jay’s House will register individuals to become members of the Family SHADE program under Jay's House and they will increase capacity in the Family SHADE program through the inclusion of CYSHCN families.  Jay’s House team will foster and develop relationships with families on understanding the definition of a Medical Home and its importance. They will work with families on obtaining early childhood services for their child's specific age-group or developmental stage in the education system. Also, they will work with families of CYSHCN on preparation and transition to the adult healthcare system.

Jay’s House will divide the CYSHCN age groups into 5 sections:

1. Infancy (ages Birth to 3): The Bamboo Group - will focus on connecting CYSHCN families to resources in the community with a healthcare focus. Jay’s team will work with families on early screening and detection. They will also focus on obtaining a pediatrician and primary care physician, Early Childhood Education, Developmental Milestones Checklist, Daycare procurement and implement strategies for preparation for pre-school and kindergarten.

2. Early Childhood (ages 4 to 8): The Aspen Group - will focus on connecting CYSHCN families to service offerings in the education system to support child development, school/family partnerships and extracurricular activities. Working with the families and schools to begin developmental testing if necessary to determine if an Individualized Education Plan (IEP) is necessary to implement. Establishing a relationship with families and connecting them with the appropriate doctors to create a Medical Home.

3. Middle Childhood (ages 9 to 12): The Cedar Group – will focus on supporting CYSHCN children and families with middle school educational service offerings such as IEP meeting attendance, IEP support (reading and interpreting the IEP), IEP preparation (before the IEP meeting, outline what services and supports the child needs). The team will work with the families with securing therapists, and ensuring the child is on a schedule that meets with their primary care physician on a regular basis. Also, supporting the families with medicine procurement and securing medical resources in the community such as wheelchairs, medical devices, and other medical-related equipment to ensure the child has the appropriate medical supports in place.

4. Adolescence (ages 13 to 15): The Linden Group – will focus on supporting CYSHCN youth and their families with implementing a Medical Home and/or solidifying the one that is already in place. Staff will work with the CSHCN youth on securing that the services are in place to ensure a smooth transition into adolescent health care when appropriate.

5. Early Adulthood (ages 16 to 18): The Redwood Group - will focus on supporting CYSHCN and their families with implementing a Medical Home and/or solidifying the one that is already in place. We will work with the CSHCN youth and their family transitioning into adult health. We will support the family and youth with securing the appropriate adult health-care physicians to develop a Medical Home that is best suited for the youth.

Jay's House will host a monthly meeting for CYSHCN families to meet and connect with one another. The goal of the meeting is to answer questions, implement a "topic of the month" to foster discussions to develop a sense of inclusivity and alleviate any feeling of alienation from being a parent or caregiver of a child(ren) who has a special healthcare need and increase membership through family referrals.

Jay's House will launch a Parent/Caregiver Engagement event to introduce this organization to the community members and provide information and background on CYSHCN and the Family SHADE project.  Jay's House representatives will begin recruitment efforts to engage with families and build partnerships through social media, school Guidance Counselors, after-school programs, and faith-based organizations.

Their team will host a Medical Home Meeting which will include families of CYSHCN and health care providers. This meeting will include strategies to improve systems of care for CYSHCN families and connect families with health-care physicians in the area.

They will ensure that families and children/youth are receiving the resources and information necessary to have early detection, testing, and secure appropriate medical professionals which will best serve their child so that they can thrive and grow through their developmental milestones.

Parent Information Center (PIC) will utilize the Family Leadership Network (FLN) in collaboration with Jay’s House to engage families of CYSHCN to promote inclusion and receive feedback on where there are gaps in service delivery for CYSHCN population.  Currently, there are 12 FLN members that will serve as collaborative leaders who contribute feedback on their experience on service delivery to Parent Information Center (PIC) and to Jay’s House as well as other organizations that serve CYSHCN and their families. This network consists of parents/guardians of children birth to 26 that have a suspected or diagnosed disability.  The network membership includes trainings, monthly learning community sessions, support with Individual Education Plans (IEPs), and referrals.  They will attend Family SHADE Learning Communities and serve as a resource, support, and mentor through their knowledge gained for other families that are navigating the system of care for CYSHCN.  The FLN members will serve as a resource and share their experiences with other families in navigating and understanding the Medical Home Model of Care through their Pediatrician/Primary Care Physician and other specialists.  FLN members will receive a monthly stipend for attendance and participation as long as Parent Information Center (PIC) has the monetary resources available for this network.

In calendar year 2023, Jay’s House will implement activities that will promote family inclusion with guidance from the Parent Information Center (PIC):

• Jay's House will host an Annual Summer Family Fun Day to foster relationship-building between families.

• Jay's House will host a Back-to-School Event for the CYSHCN families and work with them to ensure educational and medical supports are in place. They will have medical information available for the families and continue to promote implementing the Medical Home model.
• Jay's House will develop relationships with schools and medical professionals to create a system of care within a society that supports the CYSHCN families with resources and services.
• Jay's House will host 2 family holiday events in November and December
• Host the Medical Home Monthly Meeting
• Work with families and medical professionals on ensuring that children/youth are receiving appropriate services that align with their developmental stage.
• Support families with community-based services and resources

Continue to collect data to measure impact of the program

• Send out surveys to families to collect data which measures the impact of the program

Jay’s House project will be executed once Parent Information Center (PIC) provides their staff with technical support in the development of a strategic implementation plan and an evaluation plan.  Both plans will address the national performance measures (NPM) 11, 12, and 15 with the technical support and guidance of Parent Information Center (PIC).  The areas of priority in the plans will be to:

• Increase percent of children with and without special healthcare needs who are adequately insured
• CYSHCN receive the services necessary to make transitions to adult healthcare
• Children with and without special healthcare needs have a medical home
• Children receive developmentally appropriate services in a well-coordinated early childhood system

Jay’s House will develop a Strategic Outreach Plan that will engage potential CYSHCN families via social media, school Guidance Counselors, medical professionals, community centers and faith-based organizations.  They will schedule meetings with families in-person and virtually to introduce the Family SHADE program and its benefits.  Jay's House staff will also collect data to identify resources and supports needed for those children who are at an increased risk for chronic physical, developmental, behavioral, or emotional conditions.  Jay's House will work with schools, medical professionals, community centers and faith-based organizations to support the Family SHADE program and build a CYSHCN network of support builders.  Jay's House staff will follow-up with potential CYSHCN families to garner their interest, support questions about the program and identify resources and services that will support the family.  Through the tracking of Enrollment forms, surveys and questionnaires data will be tracked to include CYSHCN services and supports needed, services implemented, and suggestions from families of CYSHCN.

Jay’s House with the technical assistance of Parent Information Center and the expertise of a contracted evaluator will propose the utilization of Data Collection through the Trees Edition program which will interview families upon enrollment into the program and the utilization of the Jay's House - Trees Edition Enrollment application which will collect child/family, healthcare, socio-economic and education background. The online enrollment system will allow parents to use auto-fill. They will have a complete checklist that will ensure that parents/caregivers have provided all of the requested information for a complete Trees Program Child File.  Jay's House will create electronic questionnaires quarterly and surveys every 6 months to solicit feedback from children and families on program offerings, family resources that are needed, and other suggestions for the program.  They will collect data with case notes to include meeting topics, action items, service implementation strategies and follow-up.  The data will be transferred into a database to ensure that Jay's House is providing coordinated, comprehensive, and family-centered systems of services.

Tomaro’s C.H.A.N.G.E. (Creating healing, answers, & necessary guidance for excellence) also received a mini-grant in the amount of 25,000.00 in April of 2022. In the first year they will work on an implementation plan and an evaluation plan with the technical assistance of Parent Information Center (PIC).  They will implement the YES Program’s “YES to Mindfulness!” which ensures that children who are experiencing difficulties, regardless of mental or behavioral health issue, has an opportunity to learn mindfulness techniques that can help them.  The techniques taught to their clients can be used immediately and mastered overtime.  The techniques that they will teach, tied in with therapeutic services, can help improve a child’s overall emotional psychological, and physical health using holistic methods that would otherwise be overlooked. The target population will be youth ages 10 through 17 who reside in Delaware.  Although Tomaro’s C.H.A.N.G.E. is in Claymont, the program can be extended to those throughout the state who are interested in virtual participation.  Every five weeks youth between the ages of 10 and 17 will have an opportunity to participate in the YES Program’s ‘YES to Mindfulness!’. During this program, clients will learn a) intentions and goal setting – learn what mindfulness is and how its purpose, strength/flexibility poses, learn how to be intentional and evaluate their personal wellness goals; b) awareness and attention – learn body scanning, practice strength/flexibility poses, art activities focused on emotional state, art activity creating calming instruments; c) self-care (stress reduction and relaxation) – focus on kindness, strength/flexibility poses, learn breathing techniques, learn stressors and coping techniques; d) communication and relationship building – learn sound meditation, practice strength/flexibility techniques, learn how to define and use five senses, practice mindful listening/communicating, and e) gratitude and acceptance – learn about/practice gratitude, strength/flexibility poses, practice breathing techniques, reflect and review previous four weeks and close with a celebration of accomplishment. Upon registration, clients will meet one day per week for 2-2.5 hours depending on the week’s activity. Clients will be able to take their calming art and a gifted yoga mat home with them at the end of each five-week program. Each client will leave the program with tools and techniques that will carry them through the rest of their lives. There will be two instructors per class to ensure the safety of the clients and present a positive learning experience. The clients will not only learn the techniques of mindfulness but will be introduced to full body movement (light form of yoga and the like) and art (creating calming objects that can be used during and after the program has ended). Clients participating in this program must meet the criteria which will be based on the client’s family’s income, client’s age, and whether the client is already receiving therapeutic services.  This program will be offered 100% free to clients. The $25,000 grant will help purchase the items needed to successfully implement the program. It will also cover the expenses for staff participation and the weekly fee for using the gym (up to three hours) at the Claymont Community Center.

Tomaro’s C.H.A.N.G.E. will track and measure:

1. Increase of the number of children with Special Health Care Needs (SHCN) who have a medical home.

2. Increase the number of children who receive appropriate and timely screening, assessment, and referral to CYSHCN Services.

Tomaro’s C.H.A.N.G.E. will evaluate their project by assessing each presentation by implementing a Likert scale and open-ended questions, each containing 5-7 questions.  Assessments will be tallied at the end of each five-week program to include quantitative and qualitative data.  At the end of the year, data from all the assessments will be collected.  Data using the Likert scale will assess the behaviors of the clients as well as their attitudes regarding the mindfulness and tis effects on one’s life.  It will be important for the program to not only gather quantitative data but also to get an idea of how the program makes the clients feel, how it affects their lives during the process and after.    

Through ongoing programmatic meetings with the CYSHCN Director and the PIC Team, Family SHADE will work toward educating families of CYSHCN and enhancing the service delivery through building capacity of organizations throughout Delaware which serve families of CYSHCN.  Targeting the national performance measures (NPMs) and the gaps in service that are identified through data collection.  The CYSHCN program will execute the revitalized Family SHADE project in Delaware through innovative approaches such as Zoom meetings, emails, mail distribution and through the distribution contact list of partnering agencies that serve CYSHCN.

Family SHADE Summit:

In September of 2022 Family SHADE Project will host a Family SHADE Title V Summit which will consist of a day retreat where parents and professionals will participate in workshops addressing topics related to CYSHCN and their families and the relationship between services offered by the Division of Public Health, Division of Medicaid and Medical Assistance (DMMA), Delaware Healthy Mother Infant Consortium (DHMIC), Social Security Income (SSI), and Early Intervention (EI). There will also be presenters from supporting caregivers such as Easterseals and experts discussing preparing CYSHCN for life after high school.  There will also be a presentation by the mini-grantees: Jay’s House and Tomaro’s C.H.A.N.G.E.

Managed Care Organization (MCO) Calls:

Maternal Child Health (MCH) will continue to support the Family Voices Managed Care (MCO) Calls in Spanish and English as these calls have continued to be a wanted resource. Parent Information Center (PIC) oversees the Family Voices program and they have scheduled this forum where parents/caregivers can ask questions and/or discuss issues they are having with their Medicaid MCO (Highmark Health Options or Amerihealth Caritas).  Common Issues discussed have included: care coordination requests, In home care hours, Denials, Therapies, Private duty nursing, supplies, equipment and medication.  During the call MCO’s and Medicaid representatives along with other partner organizations can help problem solve. These calls are beneficial to parents, caregivers of children with any special health care needs, mental health/behavioral or emotional needs, who have questions and concerns regarding the Medicaid insurance they have for their children.  Also, any organization, provider or state agency with questions or calling to listen and learn.  To participate in the MCO calls, registration can be done through the PIC website at www.picofdel.org/events  or call the office at 302-999-7394.

Bureau of Oral Health and Dental Services and Family SHADE project:

Through the Division of Public Health (DPH) website: www.DEthrives.org; the DPH and Family SHADE project in collaboration with the Bureau of Oral Health and Dental Services will continue to utilize the DEthrives platform to promote and provide essential public health services to improve and promote preventative care and oral health for Children and Youth with Special Health Care Needs (CYSHCN).  Improving access to Dental Care for Delawareans with Disabilities will help the dental workforce provide more effective and culturally competent care to patients with disabilities.  Through outreach, information dissemination, and education made available to pediatricians and dental practitioners, this collaborative will educate practitioners on best practices on serving the CYSHCN population.  A Tool Kit is still an idea that we are working toward implementing through this collaborative initiative.  Since our Family SHADE project is being led by a new vendor, we will revisit this idea of a Tool Kit and explore the implementation of the Toolkit for practitioners which will include a Tool Kit of resources which will include a patient assessment tool, medical and physical evaluation tool, and other tools that will assist the practitioner in best serving CYSHCN.   

COVID Response Plan and Support:

In March of 2022-2023, Family SHADE project received additional funding to hire a contractual full-time employee (FTE) to support community-based organizations/mini grantees with technical assistance and support to build community resiliency and support the development in a variety of areas which includes COVID response plans, education, and planning. The mini-grantees which were awarded funding through the Family SHADE project will include a COVID response plan and COVID support in congruency with their implementation plan and their evaluation plan.

In 2022-2023 The Title V CYSHCN Director reached out to our Delaware Family Voices to take advantage of an opportunity offered by the National Family Voices.  The opportunity consisted of technical assistance to Family Voices and the CYSHCN Director to establish a Collaborative Action Team Process: Diverse Family Engagement & Leadership.  The State Collaborative Action Team Process included our Division of Public Health Maternal Child Health CYSHCN Director and Family Voices parent lead organization.  We worked together to develop a plan to enhance diverse family engagement and family professional partnerships at the individual, program, and /or policy level.  Through the technical support from the National Family Voices Leadership in Family and Professional Partnerships (LFPP) we established a draft Strategic Plan that included sustainability and the start of the collaborative.  Due to leadership at Family Voices changing, we have not finalized our Collaborative Action Team Plan, however we are scheduled to reconvene with the new leadership-Parent Information Center (PIC) who has merged with the Delaware Family Voices parent lead organization.

Title V staff will continue to participate in the Children with Medical Complexity Advisory Committee (CMCAC) to support their recommendations:

• We will continue to keep the CMCAC in place.
• Perform a comprehensive data analysis as it relates to children with medical complexity.
• Strengthen systems of care for children with medical complexity.
• Be clear in contracts about the role of managed care organizations in identifying and providing services to children with medical complexity.
• Develop and/or strengthen existing resources for caregivers, providers, and the larger community involved in the care of children with medical complexity.
• Strengthen the network of home health providers for children with medical complexity.

While Preventative Dental Care Visits for Children and Adolescents/CYSHCN is not one of MCHs identified goals for the upcoming application year, our CYSHCN Director and Family SHADE will resume the collaboration with the Bureau of Oral Health and Dental Services (BOHDS) for the coming 2022/2023 year.  The goal of the project is to promote and provide essential public health services to improve and promote preventative care and oral health for Children and Youth with Special Health Care Needs.  Improving access to Dental Care for Delawareans with Disabilities will help the dental workforce provide more effective and culturally competent care to patients with disabilities.  Through outreach, information dissemination, and education made available to pediatricians and dental practitioners, this collaborative will educate practitioners on best practices on serving the CYSHCN population.  Delaware’s BOHDS is currently in the process of creating, “Dental Tips for Scheduling a Dental Visit for People with Disabilities.”  They are also creating a Disabilities Fillable Form which a parent can use to capture all the information needed prior to scheduling a dental appointment with a dentist that will see their CYSHCN.  Through this collaborative initiative we will explore the implementation of a Toolkit of resources for practitioners which will include a patient assessment tool, medical and physical evaluation tool, and other tools that will assist the practitioner in best serving CYSHCN.

Delaware’s Developmental Disabilities Council:

Delaware’s Director of Children and Youth with Special Health Care Needs (CYSHCN) is a governor appointed member to the Delaware Developmental Disabilities Council (DDC).  The CYSHCN director will continue to actively serve as the Chair of the Personnel Committee and as an instrumental contributor to the Delaware Developmental Disabilities Council’s 5 Year Strategic Plan 2022-2026.  The Administration for Community Living (ACL) under the US Department of Health and Social Services approves our 5 Year Strategic Plan which is currently in draft mode on our state website awaiting approval. The DDC Strategic Plan can be accessed at: https://ddc.delaware.gov/contentFolder/pdfs/strategicPlan-DRAFT.pdf.  The mission of the Delaware Developmental Disabilities Council (DDC) is to promote and embrace inclusion, equality and empowerment. 

The DDC will work to do the following:

• Fund projects that promote systems change
• Facilitate access to culturally competent services
• Educate the public and policy makers
• Hold agencies accountable

The Goal of the Council is to foster an environment that empowers and supports all Delawareans with developmental disabilities to lead self-directed lives. Areas of emphasis for the next 5 years is Education, Early Intervention, Housing, and Health/Healthcare.  Aligning service delivery through Delaware’s Title V priorities and strategic plans for the coming year targeting families of CYSHCN assures that we are meeting the needs through a congruent and collaborative initiative addressing NPM 11 (medical home), NPM 12 (transition to adult health care for CYSHCN) and NPM 15 (adequate insurance).