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.
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.
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.
Mail applications to: Office of the Kentucky Health Benefit Exchange
12 Mill Creek Park
Frankfort, KY 40601
Medicaid Self Service Portal
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.