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.

 

In Year 2022, Delaware utilized the Parent Information Center (PIC), which began their 1st year as the new vendor to implement the newly revitalized Family Support Healthcare Alliance Delaware (SHADE) project.  The programmatic approach included 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.  PIC implemented 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 FLN network membership is a member network which offers trainings, monthly learning community sessions, and support with Individual Educational Plans (IEPs), and referrals.  FLN members received monthly stipends for attendance and participation pending there was funding available.  In the first year, they were able to recruit 12 family members that had a child or youth with special health care needs in their family.  These families were included in all levels of planning, implementation, and evaluation of CYSHCN programs and promoting positive system changes to better serve families of CYSHCN.  Family SHADE served as a learning network and resource for the community agencies serving CYSHCN.  PIC succeeded in the implementation of the revitalized Family SHADE project which consisted of the execution of competitive mini-grant opportunities that were innovative and aligned with our Maternal Child Health National Performance Measures (NPMs).   These are the NPMs the mini grantees aligned their projects with:

 

1. NPM 11 - Percent of children with and without special health care needs, ages 0-17, who have a medical home. 

2. NPM 12 - 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.

3. NPM 15 - Percent of children, ages 0 through 17, who are continuously and adequately insured.

 

Through the Parent Information Center’s leadership, they prioritized aligning the Learning Communities with the Maternal Child Health (MCH) national performance measures as well as topics addressing gaps in service and identifying needs that were impacting families of CYSHCN.  The learning communities were accessible to families and organizations serving CYSHCN.  Through these initiatives, the Family SHADE project built state and local capacity and exercised testing small scale innovative strategies to improve the overall systems of care.  PIC, in partnership with community organizations, focused on innovative strategies and improved the Title V national performance measures and supported the implementation of the standards for systems of care for CYSHCN through measurable outcomes.  PIC routinely attained surveys to track and gather information and topics being requested by the Family SHADE community by taking pre, post, and overall evaluation surveys during focused learning communities.  These surveys assisted in determining what knowledge was gained by the participant as well as what topics families and community organizations wanted to see in future learning communities.

 

Through the Family SHADE project, in April 2022, 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 the amount of $25,000.00 each.  The Family SHADE project, focused on providing these two community agencies with technical assistance on implementation and evaluation of their project so that they were in alignment with the Maternal Child Health’s NPM 11, NPM 12 and NPM 15.

 

During year 2022 and into year 2023, they each developed an implementation plan and an evaluation plan with the technical assistance of the PIC team and through the Family SHADE project.  They received technical assistance through the Learning Communities offered by the Family SHADE project.  The scope of work included 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 registered 21 families to become members of the Family SHADE program.  Jay's House increased capacity in the Family SHADE program through the inclusion of CYSHCN families.  Jay’s House’s team fostered and developed relationships with families on understanding the definition of a Medical Home and its importance. They worked with families on obtaining early childhood services for their child's specific age-group or developmental stage in the education system.  They also worked with families of CYSHCN on preparation and transition to the adult healthcare system. 

 

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

1. Infancy (ages birth to 3): The Bamboo Group – which focused on connecting CYSHCN families to resources in the community with a healthcare focus. Jay’s team worked with families on early screening and detection. They also focused on obtaining a pediatrician and primary care physician, Early Childhood Education, Developmental Milestones Checklist, Daycare procurement and implemented strategies for preparation for pre-school and kindergarten.
2. Early Childhood (ages 4 to 8): The Aspen Group – focused on connecting CYSHCN families to services offered 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. They established relationships with families and connected them with the appropriate doctors to create a Medical Home.
3. Middle Childhood (ages 9 to 12): The Cedar Group – focused on supporting CYSHCN children and families with middle school educational services offered such as IEP meeting attendance, IEP support (reading and interpreting the IEP), and IEP preparation (before the IEP meeting, outline what services and supports the child needs). The team worked with the families with securing therapists, and ensuring the child was on a schedule that met with their primary care physician on a regular basis. Also, supported 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 had the appropriate medical supports in place.
4. Adolescence (ages 13 to 15): The Linden Group – focused on supporting CYSHCN and their families with implementing a Medical Home and/or solidifying the one that was already in place. Staff worked with the CYSHCN on securing that the services were in place and ensured a smooth transition into adolescent health care when appropriate.
5. Early Adulthood (ages 16 to 18): The Redwood Group - focused on supporting CYSHCN and their families with implementing a Medical Home and/or solidifying the one that is already in place. They worked with the CYSHCN and their family transitioning youth into adult health. They supported the family and youth with securing the appropriate adult health-care physicians to develop a Medical Home that best suited the youth.

 

Jay's House hosted a monthly meeting for CYSHCN families to meet and connect with one another. The goal of the meeting was 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 launched a Parent/Caregiver Engagement event to introduce the organization to the community members and provided information and background on CYSHCN and the Family SHADE project.  Jay's House representatives began recruitment efforts to engage with families and build partnerships through social media, school Guidance Counselors, after-school programs, and faith-based organizations.

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

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

 

The Parent Information Center utilized 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 were gaps in service delivery for CYSHCN population.  At the beginning of 2022, there were 12 FLN members that were recruited and served as collaborative leaders who contributed feedback on their experience on service delivery to PIC and to Jay’s House as well as other organizations that serve CYSHCN and their families. By the end of calendar year 2022 the FLN membership decreased to 11 members. The one member left the FLN due to personal commitments and had to discontinuing their participation.

 

In calendar year 2022, Jay’s House implemented activities that promoted family inclusion with guidance from PIC:

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

• Jay's House hosted a Back-to-School Event for the CYSHCN families and worked with them to ensure educational and medical supports were in place. They provided medical information for the families and continued to promote implementing the Medical Home model.
• Jay's House developed 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 hosted two family holiday events in November and December of calendar year 2022.
• They hosted the Medical Home Monthly Meetings.
• They worked with families and medical professionals on ensuring that children/youth were receiving appropriate services that aligned with their developmental stage.
• Supported families with community-based services and resources.
• Continued to collect data to measure impact of the program.
• Sent out surveys to families to collect data which measured the impact of the program.

 

Jay’s House project was executed once the Parent Information Center provided their staff with technical support in the development of a logic model, workplan, implementation plan and an evaluation plan.  Both implementation and evaluation plans addressed NPMs 11, 12, and 15 with the technical support and guidance of PIC.  The areas of priority in the plans were:

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

 

Jay’s House developed a Strategic Outreach Plan that engaged potential CYSHCN families via social media, school Guidance Counselors, medical professionals, community centers and faith-based organizations.  They scheduled meetings with families in-person and virtually to introduce the Family SHADE program and its benefits.  Jay's House staff collected 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 worked 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 followed up with potential CYSHCN families to garner their interest, support questions about the program and identify resources and services that would support the family.  Through the tracking of enrollment forms, surveys and questionnaires data was tracked to include CYSHCN services and supports needed, services implemented, and suggestions from families of CYSHCN.

 

Jay’s House completed one year under the Family SHADE mini grant project.  This project was the first of its kind and there were accomplishments as well as opportunities to learn from in the first year of the mini grant project.

 

Accomplishments:

Jay’s House worked directly with parents, not with youth.  The Program made use of families already associated with Jay’s House and with new families recruited. The families served resided in the geographical area of the Philadelphia Pike corridor north of Wilmington to Claymont (zip codes 19802, 19809, and 19703).  The reported activities occurred between late April and mid-October of calendar year 2022.

 

Twenty families worked with Jay’s House on this mini-grant program, participating in multiple group sessions and individual consultations.  Though the contractor was unable to provide a breakdown of the number of contacts with each family.  It appears that most of the 20 families participated in most of the monthly informational and skills group sessions (four of which occurred).  Through providing resources for the families at these sessions, there were real symbiotic benefits: the families learned more, and they got contacts with other organizations providing services for children with special health care needs.  And concomitantly, through these referrals, the families publicized the availability of the Jay’s House services in the community, particularly supportive services related to Medical Home Assistance.  The positive feedback from families led to new contacts for Jay’s House, both with clients and with other community organizations.

 

Of the 20 families, all had children with special needs, primarily autism.  Among the 20 families, six families had other siblings without special needs, five had no other children, and two families had other children with special needs.  Information was not collected on the other seven families, and they could not be re-contacted by the contractor.

 

From the contractor’s perspective, the most valuable component of the mini-grant activities was the networking with other organizations.  Of particular note, through a parent Jay’s House connected with a woman who had to close her daycare during the pandemic. They are collaborating to open a daycare specifically for children with Autism and Developmental delays in 2023.  Jay’s House did not decide to apply for the year two, mini-grantee opportunity because of the new opportunity to open a daycare with a community organization targeting children with Autism and developmental delays.

 

As to community events and networking with other organizations, Jay’s House participated with other community organizations in seven community events between July 7 and October 15 in calendar year 2022.  Organizations included Planned Parenthood, Kids Count, Safe Schools, the Division of Vocational Rehabilitation, AngelSense, Camp Bliss for Kids, Claymont Community Center, and the Colonial School District.

 

Opportunities for Enhancement:

The Parent Information Center found that Jay’s House could have done a better job at the collection of data from the families that were part of the project.  Information was not collected on seven of the families, and they could not be re-contacted by the contractor, Jay’s House.  The data collection should have been a priority so it could be evaluated and utilized to meet the gaps in the population served.

 

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 worked on a Logic Model, Evaluation Plan, and a Health Survey Questionnaire with the technical assistance of the Parent Information Center.  They intended on implementing the “YES” Program’s “YES to Mindfulness!” which ensured that children who are experiencing difficulties, regardless of mental or behavioral health issue, have an opportunity to learn mindfulness techniques that can help them.  The techniques were to teach their clients to master mindfulness techniques overtime.  The techniques that they intended to teach tied in with therapeutic services, that would help improve a child’s overall emotional psychological, and physical health using holistic methods that would otherwise be overlooked. The targeted population was intended for youth ages 10 through 17 who resided in Delaware.  Although Tomaro’s C.H.A.N.G.E. was located in Claymont, the program was to be implemented throughout the state to those that were interested in virtual participation.  However, the project had a difficult time getting started and executing their program due to securing a location.

 

“Mindfulness” work was also originally planned to be a significant program addition for ongoing therapy clients, but the timing and access proved not conducive to working with current clients.  Consequently, the program was delayed and reformatted as more of a stand-alone service.  At the end of calendar year 2022, Tomaro’s C.H.A.N.G.E. did not implement their program.  In the beginning of calendar year 2023, the program took a new approach and in February 2023 they implemented weekly sessions at the Route 9 New Castle County Library.  Youth and adolescent participants began attending the “Yes to Mindfulness Program” once a week for a series of five 60-90-minute sessions, where they were taught basic techniques of mindfulness and meditation to help youth and adolescent clients heal and manage their emotions and behaviors. The short-term goal improved behavior and mental state, with a long-term goal of ultimately leading to them becoming more healthy and productive adults. Data from year one (calendar year 2022) are available.

 

 

In the beginning of calendar year 2023 attendance at the sessions increased from two in Session 1, to nine in each of Sessions 4 and 5.  There were a total of nine unduplicated participants with five participating in at least four sessions.  The ages were: (1) age seven, (1) age eight, (3) age nine, (2) age 10, and (2) age 11.  Three of the nine participants were male and six were female, with one set of twins.  Two children were known to have medical doctors.  Data collection forms are being reworked to gather explicit material on those with a medical home going forward.

 

CYSHCN criteria were noted for four participants: two participants were on medication for ADHD; one participant was suicidal in the past; and one participant had anger management issues, particularly in school. The youth with suicidal ideation was brought by a grandmother who is trying to help the child.  The mother will not seek mental health assistance for the child, and the grandmother tries to arrange having childcare so she can bring the child to the sessions, which the child enjoys and for which the grandmother is grateful.

 

Tomaro’s CHANGE did not utilize the $25,000.00 in the first half of the calendar year 2022. Their program required a lot of technical assistance from the Parent Information Center and they will continue to work under the guidance of PIC. They will resume their “YES to Mindfulness” in calendar year 2023.  Tomaro’s C.H.A.N.G.E. also had accomplishments as well as opportunities for enhancement.

 

Accomplishments:

They were able to develop a Logic Model, Evaluation Plan, and a Health Questionnaire Survey with the technical assistance from PIC and a new evaluator who has joined the team in calendar year 2023.

 

Opportunities for Growth:

Tomaro’s C.H.A.N.G.E. and PIC will benefit from making sure they are monitoring and evaluating their project every step of the way moving forward.  With PIC’s new evaluator, they have a new data survey tool that captures the data that will allow PIC to track specific information around the CYSHCN families served such as: gender, age, geographical area served, special health care need, number of times attended, and if the adult participant is a parent or guardian.  Also, measuring the satisfaction of the session as well as the knowledge gained during the Mindfulness Session with the utilization of a pre and post survey is also data that is captured from the participants moving forward in calendar year 2023.

 

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 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 hosted their 1st Annual Family SHADE Summit.  The summit consisted of a day retreat where parents and professionals participated in four breakout sessions 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), Life after high school, and Early Intervention (EI). There was also a panel of Family Leadership Network members that served as a parent panel at the summit.  They shared CYSHCN parent experiences and ways professionals, and community organizations can support families more and get involved in CYSHCN topics/issues.  There was also a presentation by the mini-grantees (Jay’s House and Tomaro’s C.H.A.N.G.E.) providing an overview of the services they offer.

The breakout sessions title and attendees were as follows:

1. Preparing youth for life after high school living independently/living independently as a parent (nine attendees)
2. Addressing the needs of CYSHCN and their families -The National Family Voices (14 attendees)
3. What is a Medical Home (Care Notebook Training) (12 attendees)
4. Understanding SSI (eight attendees)

 

Managed Care Organization (MCO) Calls/Virtual Meeting:

MCH provided 10 MCO calls/virtual meetings in calendar year 2022.  The virtual meetings were offered every second Tuesday of the month at 11:00am.  The Family Voices MCO calls/virtual meetings were offered in Spanish and English as these meetings 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).  In calendar year 2022, there were 318 participants that attended the MCO meetings.  Of the 318 duplicative participants, there were 57 that were unique.  The MCO impacted 15 (4%) CYSHCN and their families.  Some common issues discussed on the calls/virtual meetings included: care coordination requests, in home care hours, denials, therapies, private duty nursing, supplies, equipment, medication, and more.  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:

Through the Division of Public Health (DPH) website: www.DEThrives.com; the DPH and Family SHADE project in collaboration with BOHDS 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.  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, the 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 included a COVID response plan and COVID support in congruency with their implementation plan and their evaluation plan. During the September of 2022 Annual Summit, PIC had a booth where they offered the COVID vaccine to those who attended the summit. This made it convenient for CYSHCN and their families.

 

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 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.  However, due to leadership at Family Voices changing, we have not finalized our Collaborative Action Team Plan.  We plan to reconvene with the new leadership - Parent Information Center (PIC) who has merged with the Delaware Family Voices parent lead organization.

 

Title V staff participated 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 was not one of MCHs identified goals in calendar year 2022, our CYSHCN Director and Family SHADE will resume the collaboration with BOHDS for the upcoming 2023 year.  The goal of the project will continue 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 on our www.DEThrives.com Family SHADE website.  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 has been in the process of creating, “Dental Tips for Scheduling a Dental Visit for People with Disabilities.”  They continue to create 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 continue to 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 serving CYSHCN.

 

Delaware’s Developmental Disabilities Council:

Delaware’s CYSHCN Director is a governor appointed member to the Delaware Developmental Disabilities Council (DDC).  The CYSHCN Director has actively served 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 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 five 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).