Delaware

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, Rettsyndrome.org
sbrant@rettsyndrome.org  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 DelawareADRC@state.de.us.

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.

View 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.

View 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).

View Home and Community-Based Waivers Brochure

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

View Special Education Information and Resources

Conservatorship

Delaware Courts Guardianship Information

View 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

If you have favorite resources to share with others, please email that information and your experience to areed@rettsyndrome.org.

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.