Delaware estimates a population size of Children and Youth with Special Health Care Needs (CYSHCN) of 28,111.  According to the 2020/2021 National Survey of Children’s Health (NSCH), 68.8% of Delaware children are adequately insured in comparison to the national average of 68.2%.  This includes CYSHCN between the ages of 0 through 17.  Among the sub-group of children with special health care needs, 65.4% are continuously and adequately insured, compared to 69.7% of non-CYSHCN children.  Also, according to the 2020/2021 NSCH, 38.3% of Delaware children with special health care needs, ages 0 through 17, have a medical home, compared to the national average of 42.0%. This means, 61.7% of Delaware children with special health care needs, do not have a medical home.  In addition, according to the 2020/2021 NSCH, 14.4% of Delaware adolescents with special health care needs, ages 12 through 17, received services necessary to make transitions to adult health care in comparison to the national average of 20.5%.

Delaware’s Title V/Title XIX Memorandum of Understanding (MOU) will continue to establish the Cross-Agency Coordination Committee with our Medicaid partners.  We reconvened our meetings with Medicaid to meet the needs of our MCH population with the data collected from the Title V Needs Assessment last year.  Medicaid and the Division of Public Health (DPH) sees this as a fantastic opportunity to align quality improvement efforts with Title V MCH priorities to improve health outcomes for women, babies and CYSHCN.  We have established this committee and we will continue to meet.  The committee will work together to be creative in establishing training, messaging, case management, and procedures in promoting accessibility to adequate insurance coverage.

In year four of this grant cycle, 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 CYSHCN and their families.  Family SHADE will continue to serve as a learning network and respected resource for community organizations 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 Parent Information Center (PIC) will continue to implement the newly revitalized Family SHADE project by executing the second year of competitive mini-grant opportunities and awarding and implement Learning Communities to families and organizations that serve CYSHCN.  PIC will also continue to grow the Family Leadership Network (FLN) which is a network for parents/guardians of children birth to 26 that have a special health care need.  The network membership includes trainings, monthly learning community sessions, and support with Individual Educational Plans (IEPs), and referrals.  FLN members will continue to receive monthly stipends for attendance and participation pending available funding.  The Family SHADE Learning Communities will provide families and organizations with the tools to build capacity as well as strategically advocate and serve CYSHCN through community-based organizations.  PIC will continue to prioritize aligning the Learning Communities with the Maternal Child Health (MCH) national performance measures (NPMs) 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 NPMs 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.

In February of 2023, PIC began the planning phase of implementing the second year of promoting request for proposals for the mini-grant program.  A timeline was established for year 2 of the mini-grant program which afforded applicants a schedule to follow if they wanted to apply for the mini-grant opportunity.  Below is the timeline that was established.

Through year 2 of the revitalized Family SHADE mini-grant program, PIC began the planning process of implementing the second round of mini-grant funding opportunities.  They awarded a total of three organizations to implement the following services which align with the Maternal Child Health Title V National Performance Measures.  The mini grantees awarded are listed below.

1. Down Syndrome Association of Delaware – Will implement their unique partnership between the Down syndrome Association of Delaware and the Down Syndrome Program at Nemours Children’s Health System to ensure families leave clinic feeling supported, with multiple contacts helping them address medical and non-medical concerns and care for their child, mentally, physically, and emotionally. Their Multi-Specialty Approach will provide a coordinated, multi-specialty approach to address every child’s medical, developmental, and social needs helping them reach their full health and developmental potential. It is essential that families be able to access these resources on location, reducing barriers to these services by increasing convenience and providing innovative holistic support for the entire family. This project aligns with NPM 11- Access to a medical home.

2. Children’s Beach House – Will implement a Youth Development Program described as “giving kids what all kids need.”  CBH will assist in establishing and meeting kid’s needs such as relationships with friends, positive adult role models, the safety and security to try new things and develop natural skills and talents, and access to community resources to help them thrive. Through a rigorous case management program provided by the programs team of Family Engagement Coordinators (FEC), these FECs will work with each child and family to identify each child’s unique interests and talents and to weave together a network of services and relationships that will help them to thrive.  This will be in collaboration with the children’s schools and learning specialists, as well as a wide variety of partnering government agencies and community-based nonprofits. This project aligns with NPM 11 - Access to a medical home.

3. Teach Zen – Will implement the One Love, One Hearth Curriculum in at-risk children of low-income families who are enrolled in an early childcare program who receive 50% funding from Purchase of Care. The program goal is to expose young children with special health care needs between the ages of 3 to 5 enrolled in a childcare program to Social Emotional Learning and self-regulation techniques to improve their overall emotional wellbeing. A One Love, One Heart Curriculum Instructor will visit each classroom for a total of 20-30 minutes (developmentally appropriate amount of time) to implement the day’s activities. This project aligns with NPM 6 - Developmental Screening. The program will be for 12 weeks in length and covers the following topic areas:

• Kindness and Compassion
• Discovering the Benefits of using our Breathe to calm Ourselves
• Handling Emotions/Various Self-Regulation Techniques
• Positive Self Image
• Sharing/Social Engagement (Games)
• Cultural songs and community drumming

Tomaro’s C.H.A.N.G.E. decided to continue their efforts with the support of the Parent Information Center (PIC) to implement their project in year 2, since they were not able to get their project implemented in year 1.  Jay’s House did not return for a second year because through year 1 they were able to develop a network with other organizations and they went on to collaborate and open a daycare specifically for children with autism and developmental delays. The funding from Jay’s House’s mini-grant award in year 1 had no correlation with the development of the daycare that Jay’s House moved onto collaborating with partnering organizations that they met through their experience working under the Family SHADE mini-grant project. Therefore, Jay’s House will not be returning to the Family SHADE mini-grant project but will be a community resource for CYSHCN and their families.

The three organizations that were awarded: Down Syndrome Association of Delaware, Children’s Beach House and Teach Zen will begin to work on the development of their proposed projects plans such as:

• Logic Model
• Work Plan
• Evaluation Plan
• Evaluation Tool
• Sustainability proposal
• COVID response plan

The Parent Information Center will take the lessons learned from the first year of the mini-grant program and enhance the program in year 2 by monitoring the mini-grantees closely and create a data collection tool that will be administered with all the mini-grantees to assure that data collection will seamlessly align with NPMs 6, 11, 12, and 15. The PIC team will monitor and evaluate through every phase of the projects the impact that is being made on CYSHCN and their families. The PIC team will provide technical support to the mini-grantees along with regularly scheduled monthly site visits by the project coordinator.

Also, through monthly regularly scheduled programmatic meetings with the CYSHCN Director, we will review the NPMs below and align their data collection tools and their projects to mirror their projects initiatives.   

• Performance Measure 6 (Developmental Screening)

Percent of children, ages 9 through 35 months, who received developmentally appropriate services in a well-coordinated early childhood system.

• Performance Measure 11 (Access to Medical Home)

Percent of children with and without special health care needs, ages 0 through 17, who have a medical home.

• Performance Measure 12 (Transition to Adult Healthcare)

Percent of adolescents with and without special health care needs, ages 12 through 17, who received services to prepare for the transition to adult health care.

• Performance Measure 15 (Adequate Insurance) Percent of children, ages 0 through 17, who are continuously and adequately insured.

The Parent Information Center will enhance their data collection process for all of the mini-grantees as well as data collection for their other programs that serve CYSHCN and their families.  Collecting reportable data that captures the impact made on CYSHCN and their families will be a priority.  The newly developed data collection tool will capture knowledge gained through pre and post-tests provided to mini-grantee participants.  The data collection will also capture the services provided, demographical information such as gender, age, location, special health care need, number of times attended, and if a parent/guardian was present.

PIC will utilize the Family Leadership Network (FLN) in collaboration with all of the mini-grantees to promote inclusion and receive feedback on where there are gaps in service delivery for the CYSHCN population.  Currently, there are 11 FLN members that will serve as collaborative leaders who contribute feedback on their experience on service delivery to PIC and to the four mini-grantees which will serve CYSHCN and their families. This network will continue to consist of parents/guardians of children birth to 26 that have a suspected or diagnosed disability.  The network membership will include 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 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 PIC has the monetary resources available for this network.

In calendar year 2024, Tomaro’s C.H.A.N.G.E. (Creating healing, Answers, & Necessary Guidance for Excellence) will implement their reformatted project in year 2 of the mini-grant project lead by PIC since they were not able to implement their project in calendar year 2023 due to difficulties securing a location to execute their project. Therefore, the project was delayed and reformatted as more of a stand-alone service. The new approach will be to implement weekly sessions at the Route 9 New Castle County Library. Youth and adolescent participants will attend the “Yes to Mindfulness Program” once a week for a series of five 60–90-minute sessions, where they are taught basic techniques of mindfulness and medication to help youth and adolescent clients heal and manage their emotions and behaviors. The short-term goal will be to improve behavior and mental state, with a long-term goal of ultimately leading to them becoming more healthy and productive adults.

Family SHADE Symposium:

On July 15, 2023, The Family SHADE Project will host a quarterly symposium which will provide the CYSHCN community with the opportunity to engage in MCH Title V services provided to CYSHCN and their families.  It will also be an opportunity for the Family Leadership Network to provide input on their life experiences to professionals serving CYSHCN.  They will cover topics and services that align with the National Performance Measures 6, 11, 12, and 15.

Family SHADE Symposium:

The Family SHADE Project will host quarterly symposiums which will provide the CYSHCN community with the opportunity to engage in MCH Title V services provided to CYSHCN and their families.  Some of the Symposium topics will be revisited from the symposiums in calendar year 2023.  This will allow new families of CYSHCN to take advantage of attending workshops on topics such as:

• Transition: Medical and educational transitions for youth in Delaware
• Medical Home and Engaging the Family
• Communicating Visually: for families of children diagnosed with autism
• Supported Decision Making
• Student Led IEPs

2nd Annual Family SHADE Summit

On September 16, 2023; The Family SHADE Project will host the 2nd Annual Family SHADE Summit which will focus on highlighting innovative projects and other MCHB Title V programs supporting CYSHCN. The 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 as well as a presentation by the mini-grantees that have been awarded in year 2 which are: Down Syndrome Association, Children’s Beach House, Teach Zen Inc. and last year’s mini-grantee Tomaro’s C.H.A.N.G.E.

Managed Care Organization (MCO) Calls:

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. The Parent Information Center 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 (BOHDS) and Family SHADE project:

Family SHADE will continue to promote BOHDS to expand their reach to the CYSHCN population by putting the BOHDS information on DPH’s Family SHADE website www.DEthrives.com.  This will continue to afford families easy access to a dentist that is able to serve CYSHCN.  Having the BOHDS information on the Family SHADE website continues to make it more convenient for families to access the dentist that will best serve CYSHCN and eliminate them calling each dentist to ask if they can serve their child.  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. As we move forward, the four 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.

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 DPH MCH 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.

Delaware’s Developmental Disabilities Council:

Delaware’s Director of CYSHCN is a governor appointed member to the Delaware Developmental Disabilities Council (DDC).  The CYSHCN director will continue to actively serve as a Personnel Committee member 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 draft 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).