Louisiana Resources

Family Empowerment Representatives | Treatment and Research Centers | LA 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


Treatment and Research Centers


Clinics & Clinical Trials- none at this time

Signifies site involved with the Natural History Study


 State Agencies - Louisiana


Local Service Agencies

The Office for Citizens with Developmental Disabilities (OCDD)

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.

Easter Seals

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)

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

1-866-783-5553

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

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).


Handicap Placard

Louisiana OMV Offices

Your local OMV office issues handicap plates and placards. The application is available online and requires physician signature. 


State Medicaid 

Louisiana Medicaid Application

1-888-342-6207

The DHH site allows you to apply for Louisiana Medicaid online and has information on how to apply in person.

Medicaid Home and Community Based Waiver Services

These waivers allow people the flexibility to decide where they want to live and to access supports and services that best meet their needs.  Louisiana has four DD waivers, each with a specific service package and eligibility requirements:  the New Opportunities Waiver, the Children's Choice Waiver, the Residential Options Waiver, and the Supports Waiver.

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.

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

 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.

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). 


Early Intervention

EarlySteps

1-225-342-9500

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. 


Education

Special Education Program

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

This is a library of information on special education.

Local Education Agency (LEA)

1-877-453-2721

Your Child's LEA in your school district ensures that all students with disabilities who may need special education services are identified, located, and evaluated. Parents may  request an evaluation. The initial evaluation determines eligibility for services and the educational needs of your child.  You have the right to obtain an independent educational evaluation (IEE)  if you disagree with the evaluation  that was obtained by your LEA. 

Special Education Processes + Procedural Supports

The Louisiana Dept. of Education publishes Special Education Processes + Procedural Supports to provide parents with more detailed information on the program


Conservatorship

Conservatorship Forms and Information

1-504-310-2300

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

Louisiana Department of Health and Hospitals offers transition information and resources.

Regional Transition Guides

Regional Transition Guides provide local contact information for help.


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


Recreation


More Parent Recommendations

Louisiana Facebook Page Rett syndrome families

Closed group, ask to join.