Approximately 21.7% of children in Delaware have one or more special health care needs. Sometimes these health challenges can be caused by changes in our genes. Genetics providers help families learn whether genetic changes may explain the health conditions in their family and connect families to appropriate care.

To address the unique needs of families across Delaware, a diverse group of stakeholders met over the course of a year to share their perspectives and experiences about the barriers families face when trying to access genetic services in the state.  The team includes both genetic and non-genetic healthcare professionals, families and public health representatives. Together they identified the key obstacles that are preventing local families from obtaining needed genetic services.  Currently, the team is brainstorming ideas on how to address one of these pressing issues.

Visit this webpage for updates and details about their upcoming project and efforts to improve access to genetic services in Delaware.

Resources for Children and Families with Genetic Conditions in DE:

Delaware Department of Health and Social Services (DHSS): The Delaware Department of Health and Social Services is an agency of the government of Delaware responsible for public health issues. It works to support and improve the health and safety through disease pre​vention, access to care, quality management, and community engagement. They have resources on assistance, disabilities, aging, medicaid, and many others. Delaware DHSS

Newborn Screening Program: The State of Delaware screens newborn infants for conditions that can cause serious illness, developmental delays, and even death if not detected in the first few weeks of life. They provide information on what conditions are screened for. Newborn Screening Program

Birth to Three Early Intervention Program: This government organization exists to assist children with developmental delays. They provide support, individual family service plans (IFSP), and convenient early intervention services. Birth to Three Early Intervention Program

Zero to THREE : Zero to Three  works to ensure that babies and toddlers benefit from the family and community connections critical to their well-being and development. Healthy connections help build babies’ brains. Zero to Three

Division of Developmental Disabilities Services (DDDS): This government organization supports people with intellectual and developmental disabilities. They provide a network of providers including employment and vocational training, support coordination, community navigation, assistive technology, and many more. You can apply for these services and learn more on this website. Division of Developmental Disabilities Services

Delaware Special Education: The Delaware Department of Education provides information and resources for their special education program. This inclues individual education plans (IEPs) and other student support services. DE Special Education

Delaware’s Office of Children and Youth With Special Healthcare Needs (CYSHCN): The CYSHCN Program is a government organziation built to support children with special health care needs. They supply information on Autism, early intervnetion, assistive technologies, partner organizations, and many other resources. Delaware CYSHCN

Maternal and Child Health Bureau: The Maternal and Child Health Bureau strives to support women and children in their health needs. Their goal is to reduce inequities and improve health outcomes. They also provide resources for child and adolescent health as well as family planning and reproductive health. Maternal and Child Health Bureau

DE Thrives: DE Thrives is a government organization that provides resources to ensure the health of mothers and babies. They  beleive that services should foster empowerment, equity, and and individually defined quality of life. They provide information on developmental screening, health equity, family planning, and many others. DE Thrives

Family Shade: Family shade is an organization that works to connect children with special healthcare needs with community resources. They provide a roadmap to services, community resources and organizations, as well as a way to search for providers. Family Shade

DE Medicaid and Medical Assistance: The Department of Health and Social Services provides information on what medicaid and medical assistance is and how to enroll. The site provides eligibility criteria and lays out step by step the procedure on how to apply. They help connect people and families to low cost or health care. DE Medicaid

Delaware Health Children Program: This organization provides health care to uninsured children up to the age of 19 at a low cost. This organization helps provide children and their parents the resources for applying for health care. This website has links to benefits, eligibility, and how to apply. DE Healthy Children Program

Parent Information Center of Delaware (PIC): PIC of Delaware is composed up of a team who really know how special education, advocacy, and schooling works within Delaware. They work to convey that information to the families in the state. They provide information and training for parents, connections to other families, youth leadership programs, professional development, and many others. Parent Information Center of Delaware

Delaware Family to Family: Delaware Family to Family provides Family Voices which has several programs. They have information for joining Parent to Parent. They provide support on navigating health and insurance systems, peer to peer emotional support, and support for families with children who have behavioral or emotional concerns. They also will connect you with other organizations if they cannot fullfill your needs DE Family to Family

The Arc: The Arc provides resources for parents of children with autism, cerebral palsy, spina bifida, ADD, epilepsy, Down syndrome, and more. It also provides resources for community involvement, child development, individuals with disabilities, and child-care services. The Arc  

University of Delaware, Center for Disabilities Studies: Their mission is to enhance the lives of people and families through education and services for disabilities. They provide resources for assistive technology, education, transitions to adulthood, and autism initiatives. UD Center for Disabilities Studies

Autism: Autism Delaware  

Down syndrome: Down Syndrome Association of Delaware

Meet the NYMAC DE Team

Genetics Clinics in DE

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