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
Family Empowerment Representative
Pam Brady, volunteer Family Empowerment Representative,
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
The Office for Citizens with Developmental Disabilities (OCDD)
Visit The Office for Citizens with Developmental Disabilities Website
OCDD serves as the Single Point of Entry into the developmental disabilities services system. To apply for services, contact a human services district/authority listed on the website.
Visit Easter Seals Website
1-504-523-7325 Local Offices
Your local Easter Seals Office assists children with disabilities and their families in securing needed services and direct assistance such as Medicaid, Medicare and Social Security Disability. Easter Seals’ Support Coordinators also play an active role in the coordination of services to ensure that each individual’s needs are being met. Contact your local office to begin.
Community and Family Support System Plan (CFS)
Visit Community and Family Support System Plan Website
The CFS plan calls for a system of supports and services to be available for families of children and adults with disabilities in their own homes based on their individual needs in order to avoid out-of-home placement.
Regional OCDD Districts and Authorities Offices
View Regional OCDD Districts and Authorities Offices Website
Through CFS, Individual and Family Support provides an array of flexible supports and services to allow people with developmental disabilities to live in their own homes or with their families in their own community. These supports are available based on priority of need. There is no menu of services, but rather the supports are flexible to meet individual needs. Contact your regional Human Services Districts/Authorities office to begin.
Flexible Family Funds Plan
Visit Flexible Family Funds Plan Website
Through the Flexible Family Funds Plan, OCDD provides monthly stipends to families of eligible children with severe developmental disabilities from birth to age 18 to help their families meet extraordinary costs. These subsidies are offered on a first-come, first-served basis. To submit an application, contact a human services district or authority (listed as Regional OCDD Districts and Authorities above).
Louisiana Medicaid Application
View Louisiana Medicaid Application
The DHH site allows you to apply for Louisiana Medicaid online and has information on how to apply in person.
New Opportunities Waiver
View New Opportunities Waiver
The New Opportunities Waiver offers people age 3 and older who require the level of care of an Intermediate Care Facility for the Developmentally Disabled (ICFs/DD) to remain in their communities. Services are based on the need of the recipient.
View Children's Choice Waiver
View Children’s Choice Waiver
The Children’s Choice Waiver offers supplemental support to children through age 18 who currently live at home with their families or with a foster family.
Residential Options Waiver
View Residential Options Waiver
The Residential Options Waiver offers people of all ages services designed to support them to move from ICFs/DD and nursing facilities to community-based settings, and to serve as an alternative to institutionalization.
View Supports Waiver
The Supports Waiver offers focused, individualized vocational services to people age 18 and older who otherwise would require the level of care of an Intermediate Care Facility for the Developmentally Disabled (ICFs/DD).
Visit EarlySteps Website
Early Steps is Louisiana’s Early Intervention System for children with disabilities and developmental delays, ages birth to three. Services include screening and assessment and coordination of early intervention for children with developmental disabilities.
Special Education Program
Visit Special Education Program Website
To receive support through Louisiana Department of Education’s Special Education program, a student must be evaluated to determine eligibility. Schools provide a personal written plan, called an Individualized Education Program, for every student with disabilities.
Students with Disabilities Library
Visit Students with Disabilities Library Website
This is a library of information on special education.
Special Education Processes + Procedural Supports
Visit Special Education Processes + Procedural Supports Website
The Louisiana Dept. of Education publishes Special Education Processes + Procedural Supports to provide parents with more detailed information on the program
View Conservatorship Forms and Information
View Conservatorship Forms and Information
Conservatorship is a legal proceeding in which an individual or agency is appointed by a court to be responsible for a person who needs assistance in activities of daily living. This process should start approximately 6 months before the 18th birthday.
Transition to Adult Services
Department of Health and Hospitals
View Department of Health and Hospitals
Louisiana Department of Health and Hospitals offers transition information and resources.