Contact Information
Ann Phillips
(302) 831-1705
aphillip@udel.edu
Beth MacDonald
1-888-835-5669
bethappenzeller@aol.com
Bruce Orr
(302) 761-9347
Bruce4093@aol.com
Family Voices of Delaware (FV DE) assists families of CYSHCN and the
professionals who serve them through: direct information and referral, parent
matching, support groups, conferences, topical calls, resource guides, listserves,
newsletters, and surveys. FV DE monitors legislative action that will impact families
and works closely with other families and Delaware Medicaid to improve services for
CYSHCN. FV DE is funded by the DE Maternal and Child Health Program, DE
Emergency Medical Services for Children (EMSC), Easter Seals, the University of
Delaware Center for Disabilities Studies, and the DE Early Intervention Program.
HIGHLIGHT: Partnering Families with EMS Personnel
FV DE has been instrumental in the ongoing success of the Special Needs Alert
Program (SNAP), a collaborative effort with EMSC to
connect families of CYSHCN with their local emergency
medical services. Through this innovative program, a model for other states, CYSHCN are identified providers is shared with local paramedics.
“ To have established this level of cooperation and collaboration among families, pediatricians, EMS personnel, and emergency room personnel is to be commended.”-Special Needs Alert Program Survey Report
In the event of an emergency, emergency personnel have easy access to the medical information they need before they arrive. Currently there are 70 families registered in SNAP. In 2006, SNAP families, paramedics and ambulance BLS staff were surveyed in order to evaluate the program. Results indicate that SNAP has been very effective in educating families and emergency personnel and helping them work as a team.
WORKING TOGETHER FOR CYSHCN:
FV DE partners with many organizations to improve care for CYSHCN:
- Title V
- State Office of EMS
- University of Delaware Center for Disabilities Study
- Governor’s Advisory Council for Exceptional Citizens
- Birth to Three Program
- Autism Society of Delaware
- Partners in Policy Making
- Easter Seals
- Little People of America
- Diann Jones, Special Needs Planner
- United Cerebral Palsy
- Down's Syndrome Association
- Delaware Developmental Disabilities Council
ADVOCACY IN ACTION:
Last year, FV DE:
- Distributed information through 40 special needs newsletters and e-newsletters
- Informed 880 families and professionals by participating in 32 meetings
- Reached 163 families and professionals, on average, through listservs each quarter
Materials
Special Needs Alert Program (SNAP): The materials below provide information about the SNAP program which is designed to inform emergency medical personnel about your child's special needs before an emergency occurs. SNAP identifies children ages 0–21 with special health care needs. SNAP lets families meet with Emergency Medical Service (EMS) staff in the family’s home before they have to make a 911 call. This includes ambulance drivers, paramedics and other professionals. No family will be excluded if they feel they would benefit from SNAP. Families can enroll in the SNAP program at anytime. Any child with special emergency care needs may enroll. This includes, but is not limited to children with: tracheotomies, IV therapy, and feeding tubes. This includes premature and low birth weight babies.Participation is strictly on a voluntary basis. You may cancel enrollment at anytime.Together, the family and emergency medical service team will determine the child’s most important needs in the event of a 911 call. The SNAP program is free of charge!
- SNAP brochure
- SNAP poster
- Letter to Parents
- Enrollment Form
- Home Visit Information Form: New Castle County
- Home Visit Information Form: Kent / Sussex County
- Emergency Information Form
- Consent Form
- Spanish Information Packet
Useful Links:
- Delaware Family Voices Family to Family Health Information Center
- State of Delaware Web Site
- Alfred I. duPont Hospital for Children
- Division of Developmental Disabilities
- Birth to 3 Early Intervention System
- Delaware Recycles Assistive Technology
- Delaware Central Directory of Services for Young Children with Special Needs: Alcoholism, Drug Abuse and Mental Health - (DSAMH)
- Parent Information Center of Delaware
- State of Delaware Developmental Disabilities Council
- Delaware Central Directory of Services for Young Children with Special Needs: Division of Public Health
- Delaware Department of Education: Special Education
- Delaware Assistive Technology Initiative
- Delaware Department of Insurance
- Center for Disabilities Studies
- Asperger's Network of Delaware
- The Autism Society Of Delaware
- Easter Seals of Delaware and Maryland Eastern Shore
- Very Special Arts Delaware
- The Lower Delaware Autism Foundation
- DE Governor's Advisory Council for Exceptional Citizens (GACEC)
- Hearing Loss Association of Delaware, Inc.(HLADE)
- Diann Jones, Special Needs Planner
