Delaware estimates a population size of Children and Youth with Special Health Care Needs (CYSHCN) of 30,231.  According to the 2018-2019 National Survey of Children’s Health (NSCH), 69.6% of Delaware children are adequately insured in comparison to the national average of 62.1%.  This includes CYSHCN between the ages of 0 through 17.

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 virtually and pending the results of COVID-19 pandemic will determine if we will begin to meet in person.  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 two, 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).

Delaware’s Title V utilized the Needs Assessment results to revitalize the approach in executing the Family Support Healthcare Alliance Delaware (SHADE) Program contracted with the University of Delaware.  In preparation to the contract ending, with the University of Delaware, a competitive Request for Proposal (RFP) was created and administered in our state.  The RFP was developed in alignment with the three National Performance Measures (NPM) that are specific to Children and Youth with Special Health Care Needs (CYSHCN) birth to age 21 population, who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally. 

The three NPMs specific to CYSHCN are:

1. NPM 11 – Percent of children with and without special health care needs, ages 0-17, who have a medical home.
2. 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 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.

Delaware Division of Public Health will contract with a qualified organization to operate and manage the Family SHADE mini-grant project.  The established Family SHADE Advisory Board will serve as the interconnecting hub of an alliance of organizations that serve families of CYSHCN.  Through this govern ordinance that has been established within the Family SHADE Advisory Board, the execution of services to CYSHCN are not duplicative in services.  This board and the leadership of Family SHADE contracted recipient will serve as the fiduciary agent and convener for the mini-grant project.  The recipient will work to build state and local capacity, and test small scale innovative strategies to improve the overall systems of care.  The primary focus is innovation and strategies to improve the Title V National Performance Measures and/or support the implementation of the standards for systems of care for CYSHCN through measurable outcomes.

Until the current contract comes to an end, Family SHADE will continue to utilize their board members and partners throughout the state to provide technical assistance and trainings to better serve families of CYSHCN.  Trainings that will better position their organizations to compete for grant funding opportunities by providing grant writing workshops to their board members who manage large and small grassroot organizations.

In 2021, Family SHADE coordinated an Emergency Preparedness Workshop.  This workshop was a collaborative effort with the Delaware Department of Health and Social Services, Division of Public Health, Office of Preparedness and Sussex County Emergency Operations, the Developmental Disabilities Council, as well as the University of Delaware Center for Disabilities Studies.  The workshop was designed to provide an overview of basic important steps which individuals and families, need to take to be better prepare for a variety of potential emergencies.  Participants were encouraged to take the time to plan and prepare in advance.  With this training, Individuals and families can help minimize the negative impact of unexpected emergencies or disasters, and improve one’s personal level of resiliency, as well as the resiliency of our community. 

Items that were included in the Emergency Preparedness Workshop:

• Methods for developing emergency plans that are sensitive to the unique needs of families, including those with children with special healthcare needs
• Steps to develop an effective family communication plan
• A description of the Delaware communication systems in place to support preparedness
• A review of methods to develop individual emergency kits and go-bags.

Family SHADE held a workshop on Nemours Transition Plan Program which provides services to children, especially those with chronic (ongoing) or complex medical conditions.  Their transition care team can help make the switch to adults a lot easier for adult services.  This training also assisted families and adolescents understand the services the Transition Team provides, such as with self-management skills like appointments, and understanding how to navigate their insurance.  Making sure that they had adequate insurance to meet their health needs was a topic that was part of the discussion.  Transition is a very important step in preventing interruptions in care as well as delays in necessary medications and tests.       

We will continue to support the Family Voices Managed Care Calls in both Spanish and English as they continue to be a wanted resource.  Family SHADE will continue to assist with advertising these calls to ensure families have access to Medicaid staff to discuss any issues they may have or address questions they may have about what services are covered.

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 form 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 at our Delaware Family Voices.

Title V staff and Family SHADE 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 continue to work in collaboration with the Bureau of Oral Health and Dental Services (BOHDS) for the coming 2021/2022 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.

Family SHADE will continue to work with the Title V Children and Youth with Special Health Care Needs Director to educate families of CYSHCN on the available medical insurance coverage that is available in Delaware through innovative approaches such as Zoom meetings, emails, mail distribution and through the distribution contact list of partnering agencies that serve CYSHCN. 

The Work Plan for 2020 Family SHADE/Title V will continue to be implemented and enhanced once a new vendor is selected to execute the Family SHADE project.  The Work Plan consists of the following:

• Families of children and youth with special health care needs (CYSHCN) will have access to the community-based services that they need.
  • Continue to support the development of the Family SHADE organization and its mission of improving the quality of life for CYSHCN by connecting families and providers to information, resources and services.
  • Improve access of CYSHCN and their families to information, resources, and services.
  • Support an improvement in the infrastructure, capacity, and effectiveness of services of Family SHADE member organizations.
• Improve the health and access to health care of CYSHCN in Delaware.
  • Family SHADE will implement their recently completed Strategic Plan which will align with the Delaware Division of Public Health, Maternal and Child Health Bureau’s identified Domains and National Performance Measures.
  • Increase the knowledge of families of CYSHCN about medical insurance, medical homes, and access to healthcare in Delaware.
  • Increase access of CYSHCN to healthcare by providing families with information about insurance options for CYSHCN in Delaware.
  • Assist Delaware MCH in addressing cross-cutting priorities which also meet the needs of CYSHCN and their families.
• Delaware CYSHCN and their families will be better prepared for the transition to adulthood.
  • Connect Youth with Special Health Care Needs and their families to information about transition to adult life including health care services and systems.
• Enhance the role of the Family SHADE program to include educating governmental entities and others regarding recognized gaps in services and family support to CYSHCN and their families.
  • Provide information to policy makers via letters and/or meetings from Family SHADE Advisory and/or members regarding issues of concern to families of CYSHCN.
  • On the Family SHADE website, a Roadmap is now featured on every landing page of the website and includes information about medical home/insurance.

Additionally, while we have not chosen to continue the Medical Home National Performance Measure for CYSHCN for the upcoming application year, we will continue to pursue avenues of improvement for this population and will leverage work under the adolescent domain to address preventative well-visits for adolescent with special health care needs.  We will also be developing messaging on what a medical home is and the importance of a medical home.  Work will also continue to promote the developed care coordination notebook for families to help promote medical home and care coordination for CYSHCN.  Specifically, through contracts with Hands & Voices Chapters a care coordination handbook was modified for families with children who are deaf or hard of hearing.  Likewise, through collaborations with the Delaware Building Bridges Project, Autism Delaware, and Family Voices care coordination for families with children diagnosed with Autism Spectrum Disorder will be developed. 

Throughout the year we will continue to use the Family SHADE Families Know Best (FKB) survey to keep a pulse on how families are experiencing the level of care for their children.  Questions will be included on a quarterly basis regarding the families’ perspective on care coordination and the components of a medical home.  Our measure for this strategy will be the number of responses and category of response to the survey question.

Continuing in Year three, will be the Pilot Project to provide outreach and education to our primary care providers in Sussex County around Part C services, care coordination, and community services.  Through the personal contact of the Advanced Practice Nurse, with knowledge of the community, Part C and services, with the key personnel within the Primary Care Practices we hope to be able to track measurable outcomes, including: knowledge of community services and referral processes to Part C and Part B.  The increased knowledge within the practice should lead to an increase in the number of all families responding positively to questions around medical home in the bi-annual children’s survey.