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

Family Empowerment Representative

Anetha Sanford, volunteer Family Empowerment Representative,
[email protected] 1-859-552-2122

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

Kentucky Cabinet for Health and Family Services

Visit Kentucky Cabinet for Health and Family Services Website
The Division of Developmental and Intellectual Disabilities (DDID) partners with and supports persons with intellectual or developmental disabilities. DDID comprises two branches—the Supports for Community Living Waiver Branch and the Community Support Branch.

Supports for Community Living (SCL) Waiver Branch

Visit Supports for Community Living Waiver Branch Website
Supports for Community Living (SCL) Waiver Branch The SCL Waiver Branch of the DDID provides staff support for and oversight of the SCL waiver program. 1-502-564-7700

Community Supports Branch

Visit Community Supports Branch Website
The Community Support Branch oversees the 14 Regional Community Mental Health/Intellectual Disability Centers (CMHCs). DDID Regional Liaisons work with CMHCs to assist persons with disabilities and their families in locating resources and supports. CMHCs provide services such as case management, community access, supported employment and respite.
View Regional DDID Liaisons

The Dream Factory

The Dream Factory is the largest children’s wish-granting organization that does not limit its mission to children who have life-threatening illness. The organization believes children with chronic illnesses and disorders also suffer from substantial emotional and physical pain.

State Medicaid

Apply for Medicaid

1-855-459-6328 Call Center
Individuals or families may apply for Medicaid in the following ways: Self Service Portal, mail or fax, in person, or Call Center.
1-502-573-2005 Fax
Mail applications to: Office of the Kentucky Health Benefit Exchange
12 Mill Creek Park
Frankfort, KY 40601

Medicaid Self Service Portal

Visit Medicaid Self Service Portal Website

View SCL Waiver
The SCL waiver program was developed as an alternative to institutionalization to allow a person to remain in the community. Persons with developmental disabilities who meet the requirements for residence in an Intermediate Care Facility and who meet other Medicaid requirements are eligible. Apply directly to the DDID by faxing or mailing the application or electronically through a case manager using MWMA.


Division of Learning Services

Visit Division of Learning Services Website
The DLS site includes information on all aspects of special education programs in public schools.

School Based Medicaid Services

Visit School Based Medicaid Services Website
Kentucky school districts may participate in two Medicaid School-Based Programs; School-Based Health Services and School-Based Administrative Claiming.

Transition to Adult Services

Office of Vocational Rehabilitation (OVR)

Visit Office of Vocational Rehabilitation Website
For students with disabilities the success of the transition from school to adult life depends on teamwork and collaboration between the schools and community resources. OVR works closely with the Kentucky Department of Education to assist eligible students with disabilities to identify, plan for, and achieve their vocational goals. Typically, a referral is made when the student is within two years of exiting high school. A student can be referred earlier if appropriate.

View Local OVR offices

Handicap Placard

Kentucky KTC

Visit Kentucky KTC Website
You must apply for a placard or license plate, which requires medical certification. If your placard or plate is lost, stolen, or damaged, you can get a replacement from your county clerk’s office.

View County Clerk’s Offices