Indiana Resources

Family Empowerment Representatives  | Treatment and Research Centers | IN 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


Clinical Sites 

Signifies site involved with the Natural History Study

None at this time


 State Agencies - Indiana


Local Service Agencies

Bureau of Developmental Disabilities Services (BDDS)

1-800-545-7763

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

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)

DDRS Disability Services page has answers to many questions about services and supports.

Disability Resources

Disabilityresources.org has a comprehensive list of resources available to Indiana residents.

BDDS Resources/FAQ Page


Handicap Placard

Indiana BMV

 1-888-692-6841

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 practitioner’s listed on the application. There is no fee.


State Medicaid 

Apply for Medicaid

 1-800-403-0864

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. 

Local DFR Office

To apply for Medicaid in person, visit your local DFR office.

Community Integration and Habilitation Waiver (CIHW)

 1-800-545-7763

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

 1-800-382-9100

The ARC has information about Indiana Medicaid and Medicaid Waivers. 


Early Intervention

First Steps

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.

First Steps Offices

Department of Education

 1-508-362-2220

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. 


Education

Indiana DOE

 1-877-851-4106

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.  specialeducation@doe.in.gov 

InSource 

 1-800-332-4433

InSource has assembled information that is available to Indiana parents, families, educators and other professionals.  All information is free of charge to Indiana parents.  To request materials or information, please email insource@insource.org.


Conservatorship

Conservatorship is a legal proceeding in which an individual or agency (to be known as the "conservator") is appointed by a court to be responsible for a person who needs assistance in daily living. Check with your child's high school or your county Superior Court Probate Office for information on Self Help Clinics. This process should start 6 months before the 18th birthday.

Indiana Guardianship Laws

Indiana's Adult Guardianship Office

 1-317-232-2542

The Adult Guardianship Office serves as a resource for courts and the general public on all issues related to adult guardianship.

erica.costello@courts.IN.gov  


Transition to Adult Services

Illinois Transition Planning Handbook


Parent Recommendations

If you have favorite resources to share with others, please email that information and your experience to areed@rettsyndrome.org


 Medical Professionals

Riley Hospital for Children

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

Indiana Rettsyndrome.org Families Facebook Page

Click and ask to join.