Delaware Resources

Family Empowerment Representatives | Treatment and Research Centers | DE State Agencies | Parent Recommendations


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.

Brittney Gibson, Rettsyndrome.org  bgibson@rettsyndrome.org  1-800-818-7388

Kenna Seiler , volunteer Family Empowerment Representative,  kenna.seiler@theseilerlawfirm.com 1-936-760-5724


Treatment and Research Centers


Clinical Sites - none at this time


State Agencies - Delaware


Local Service Agencies

Office of Children with Special Health Care Needs

Delaware’s Office of Children with Special Health Care Needs works to improve the well being of children with special health needs.

Delaware Family Voices

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)

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.  DelawareADRC@state.de.us  

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.

DMMA Long Term Care Medicaid Unit 

Division of Developmental Disabilities Services- Community Services

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

 1-866-552-5758


Handicap Placard 

Division of Motor Vehicles

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.

Application for Special Liscense or Special Parking ID Card


State Medicaid  

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

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

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.

DMMA Long Term Care Medicaid Unit

Primary Caregiver Assessment Form for Child’s Health and Social Status

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).

Home and Community-Based Waivers Brochure


Early Intervention

Child Development Watch

1-800-671-0050

Child Development Watch is the statewide early intervention program for children ages birth to 3.

Delaware's Early Childhood Plan 

Early Childhood Resources


Education

Special Education Information and Resources


Conservatorship

Delaware Courts Guardianship Information


Transition to Adult Services 

Transitions after High School

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.

Operating the Transition Process: A Guide for Students and Families


Parent Recommendations

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


Medical Professionals

ClinicalTrials.gov  

This site has a comprehensive listing of clinical studies involving Rett Syndrome patients or families.


Therapy ( PT, OT, Speech, Hippotherapy and Aquatherapy) 


Legal Resources 

The Arc of Delaware

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

CLASI provides free legal services to people with disabilities, as Delaware’s Protection and Advocacy System.


Recreation


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