Delaware
- Family Empowerment Representatives
- Treatment and Research Centers
- State Agencies & Resources
- Parent Recommended Resources
Family Empowerment Representatives
Family Empowerment Representatives are volunteers who provide emotional support, information and resources to families affected by Rett syndrome. Contacting them should be your first step.
National Family Empowerment Representative
Samantha Brant – Family & Community Engagement Manager, International Rett Syndrome Foundation
[email protected] 1-913-221-8157
Treatment and Research Centers
Your child may be able to participate in studies and trials to advance treatment and knowledge of Rett syndrome. There are clinics specializing in Rett syndrome that can help you provide Rett-specific care for your child.
Clinical Trials
Rett syndrome clinical trials are available at various stages in the process. Please visit our Clinical Trial page for current enrollment status.
State Agencies & Resources
Local Service Agencies
Office of Children with Special Health Care Needs
Visit Children with Special Health Care Needs Website
Delaware’s Office of Children with Special Health Care Needs works to improve the wellbeing of children with special health needs.
Delaware Family Voices
Visit Delaware Family Voices Website
Delaware Family Voices helps families of children with special needs become informed, experienced, and self-sufficient advocates for their children and themselves. There is no charge for the services.
Delaware Aging and Disability Resource Center (ADRC)
Visit Delaware Aging and Disability Resource Center Website
1-800-223-9074
Delaware Aging and Disability Resource Center (ADRC) is your one-stop access point for aging and disability information and resources in Delaware. Email [email protected].
Children's Community Alternative Disability Program
View Children’s Community Alternative Disability Program
This program is operated by the Division of Medicaid & Medical Assistance. It provides Medicaid coverage to severely disabled children who do not qualify for Supplemental Security Income (SSI) or other Medicaid qualifying programs because of their parents’ income and/or resources. Parents wishing to apply for this program for their child should contact the nearest DMMA Long Term Care Medicaid Unit.
Division of Developmental Disabilities Services - Community Services
Visit Division of Developmental Disabilities Services – Community Services Website
Division of Developmental Disabilities Services Community Services is the operational unit of the Division that is responsible for overseeing services delivered directly to the individuals we support. Services provided by Community Services Staff include: Employment Information, Family Support Services, Day Habilitation / Transition Services, Residential Services, and Respite Services. For more information, Contact your Regional Community Services Office.
Regional Community Services Office
Visit Regional Community Services Office Website
1-866-552-5758
State Medicaid
Division of Medicaid and Medical Assistance
View Division of Medicaid and Medical Assistance
Apply for Medicaid
You can apply through ASSIST. ASSIST is a web site that allows individuals and community-based organizations access to screen and apply for a broad range of social service programs.
Delaware Healthy Children Program
View Delaware Healthy Children Program
1-800-996-9969
The Delaware Healthy Children Program is a low-cost health insurance program for Delaware’s uninsured children. The Delaware Healthy Children Program features the same high-quality coverage you’d get with some of the best private insurance plans. To apply, fill out and mail an application form on paper, or complete and submit an application online via ASSIST. A paper application form may be obtained either by calling or by printing a copy of the DHCP application form.
Children's Community Alternative Disability Program
View Children’s Community Alternative Disability Program
This program is operated by the Division of Medicaid & Medical Assistance. It provides Medicaid coverage to severely disabled children who do not qualify for Supplemental Security Income (SSI) or other Medicaid qualifying programs because of their parents’ income and/or resources. Parents wishing to apply for this program for their child should contact the nearest DMMA Long Term Care Medicaid Unit.
Primary Caregiver Assessment Form for Child’s Health and Social Status
View Primary Caregiver Assessment Form for Child’s Health and Social Status
Developmental Disabilities Home and Community Based Waiver Program
View Developmental Disabilities Home and Community Based Waiver Program
1-866-552-5758
These services provide case management to individuals who are determined to be eligible for supportive home services as an alternative to institutionalization. Case Managers and nursing staff from State or contracted agencies work to determine eligibility and arrange for those services to be provided. They also monitor these services regularly to assure that high-quality care continues. This program is administered by the Division of Developmental Disabilities Services (DDDS).
Early Intervention
Child Development Watch
Visit Child Development Watch Website
1-800-671-0050
Child Development Watch is the statewide early intervention program for children ages birth to 3.
Education
Special Education Information and Resources
Conservatorship
Delaware Courts Guardianship Information
Transition to Adult Services
Transitions after High School
Visit Transitions after High School Website
Transition planning should be in effect when a student turns 14 or enter the Grade 8, or younger if deemed appropriate by the IEP team.
View Operating the Transition Process: A Guide for Students and Families
Handicap Placard
Division of Motor Vehicles
Visit Division of Motor Vehicles Website
The updated Division of Motor Vehicles Application for Special License or Special Parking ID Card for Persons with Disabilities may be downloaded or obtained from any Division facility. Completed forms should be mailed to: State of Delaware, Division of Motor Vehicles, PO Box 698, Dover DE 19903, Attn: Correspondence The application needs to be certified by a licensed physician, a physician assistant who is supervised by a licensed physician, or an advanced practice nurse who is employed by or who has a collaborative agreement with a licensed physician.
View Application for Special License or Special Parking ID Card
Parent Recommended Resources
If you have favorite resources to share with others, please email that information and your experience to [email protected].
Legal Resources & Information
The Arc of Delaware
Visit The Arc of Delaware Website
The Arc of Delaware is a statewide non-profit organization dedicated to advocating for and serving Delawareans with intellectual and developmental disabilities (I/DD) and their families.
CLASI
Visit CLASI Website
CLASI provides free legal services to people with disabilities, as Delaware’s Protection and Advocacy System.