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
Regan Zwald, volunteer Family Empowerment Represenative,
[email protected] 1-317-607-9589
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
Bureau of Developmental Disabilities Services (BDDS)
Visit Bureau of Developmental Disabilities Services Website
BDDS provides services for individuals with developmental disabilities to enable them to live as independently as possible. BDDS assists individuals in receiving community supports and residential services.
BCCS Field Services Offices
Visit BCCS Field Services Offices Website
BCCS Field Services Offices To apply for services or to determine if you may qualify for services, please contact the local BDDS field services office near you.
Division of Disability and Rehabilitative Services (DDRS)
Visit Division of Disability and Rehabilitative Services Website
DDRS Disability Services page has answers to many questions about services and supports.
Apply for Medicaid
Apply for Medicaid
To apply for Medicaid, you will need to fill out and submit an Indiana Application for Health Coverage form. Visit “Am I Eligible?” or the eligibility guide to help you determine which application form you will need to fill out and submit. It takes about 45-90 days to determine eligibility. You can apply in person, online, or by phone.
View Local DFR Office
To apply for Medicaid in person, visit your local DFR office.
Community Integration and Habilitation Waiver (CIHW)
Visit Community Integration and Habilitation Waiver Website
This waiver provides Medicaid Home and Community-Based Services (HCBS) waiver services to participants in a range of community settings as an alternative to care in an intermediate care facility. The waiver serves persons with a developmental or intellectual disability. Participants may choose to live in their own home, family home, or a community setting. Participants develop an Individualized Support Plan (ISP) guided by an Individualized Support Team (IST). There is no waiting list for the CIH Waiver.
The FS Waiver
The FS Waiver can provide up to $16,545 annually in services and supports. New applicants will be placed on the FS Waiver waiting list. The income and resources of an adult or child (under 18) receiving waiver services ARE considered in determining eligibility. Parental income for children under 18 is NOT considered.
The ARC of Indiana
Visit The ARC of Indiana Website
The ARC has information about Indiana Medicaid and Medicaid Waivers.
Visit First Steps Website
First Steps is Indiana’s Early Intervention program. The goal of First Steps is to help infants and toddlers receive services now to help them in the future. The 16 main services provided are listed on the website. Call or email First Steps to make a referral. The referral will then be assigned to a Coordinator who will set up an initial appointment with the family.
View First Steps Offices
Department of Education
Visit Department of Education Website
Public schools provide special education services for eligible children starting at age 3. Individual Education Plans may include preschool instruction, related services or other supports. Parents who have any concerns about their child’s development, or know that their child has a disability, may request an evaluation by contacting their local public school. If a child is enrolled in First Steps prior to turning three the request for evaluation can be a part of the transition process. The Indiana Department of Education can help you contact your local school.
Visit Indiana DOE Website
The Office of Special Education’s Special Education Team ensures that all eligible students with disabilities are provided a free appropriate public education in the least restrictive environment. Email [email protected].
Indiana Guardianship Laws
Transition to Adult Services
Illinois Transition Planning Handbook
Visit Indiana BMV Website
The BMV issues handicap placards. The application may be submitted to any Indiana license branch or mailed to the address listed on the application. The disability must be certified by one of the qualifying medical practitioners listed on the application. There is no fee.
Parent Recommended Resources
If you have favorite resources to share with others, please email that information and your experience to [email protected].