Missouri
- Family Empowerment Representatives
- Treatment and Research Centers
- State Agencies & Resources
- Parent Recommended Resources
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
Joyce Opinsky, volunteer Family Empowerment Representative
[email protected] 1-314-346-1323
Amanda Sommer, volunteer Family Empowerment Representative
[email protected] 1-636-795-8195
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.
Clinical Trials
Rett syndrome clinical trials are available at various stages in the process. Please visit our Clinical Trial page for current enrollment status.
Improving Upper Extremity Motor Skills in Persons w/Rett Syndrome Using Virtual Reality Computer Games
Visit Improving Upper Extremity Motor Skills in Persons w/Rett Syndrome Using Virtual Reality Computer Games Website
1-815-450-0069 Kourtney
This is a study designed to test the use of a movement sensor as a method of playing Internet Virtual Reality games as therapy for individuals with Rett syndrome. Contact Kourtney Mraz [email protected].
Clinics
Washington University School of Medicine
Clinic Name: Rett Spectrum Clinic at Washington University School of Medicine and St. Louis Children’s Hospital
Medical Directors: Robin Ryther, MD, PhD & Judy Weisenberg, MD
Clinic Address: St. Louis Children’s Hospital – One Children’s Place, Suite 2130, St. Louis, MO 63110
Clinic Phone: (314) 454-6120
Part of the IRSF Center of Excellence Network
CLINIC WEBSITE
State Agencies & Resources
Local Service Agencies
Missouri Division of DD
Visit Missouri Division of DD Website
The state of Missouri Division of DD has 5 waivers that service children with developmental disabilities.
Missouri Department of Health's Division of Developmental Disabilities (DD)
Visit Missouri Department of Health’s Division of Developmental Disabilities Website
1-800-207-9329
The DD serves a population that has developmental disabilities and certain learning disabilities. Such conditions must have occurred before age 22, with the expectation that they will continue. To be eligible for services, persons must be substantially limited in their ability to function independently. Contact your Regional Office to begin.
View Comprehensive Waiver
View Comprehensive Waiver
The Comprehensive Waiver provides residential and individualized supported living services. This waiver does not have an individual cap on the amount of service an individual can receive throughout the year.
Developmental Disabilities Regional Offices
View Developmental Disabilities Regional Offices
There are 11 Developmental Disabilities Regional Offices to help you determine eligibility.
Missouri Children's Developmental Disabilities Waiver (MOCDD)
View Missouri Children’s Developmental Disabilities Waiver (MOCDD)
Missouri Children’s Developmental Disabilities Waiver (MOCDD) is issued by the Department of DD. To be eligible, the child must not be eligible for Medicaid under regular guidelines; must be under the age of 18; live with their parents/family; meet financial guidelines; be determined to have a permanent and total disability; be eligible for ICF/ID level of care; and be at risk of needing ICF/ID services if waiver services are not accessed.
Governor's Council on Disability (GCD)
Visit Governor´s Council on Disability Website
1-800-877-8249
The GCD promotes full participation and inclusion of the nearly 1 million Missourians with disabilities in all aspects of community life by educating citizens, businesses, schools, universities and others of their rights and responsibilities under the Americans with Disabilities Act. The State Disability Portal contains a vast amount of information and resources for those with disabilities.
View Available Disability Benefits
Community Support Waiver
View Community Support Waiver
The Community Support Waiver helps people with developmental disabilities and may provide up to $28,000.00 a year for supports and services.
The Dream Factory
Visit The Dream Factory Website
“We grant dreams to critically and chronically ill children from the ages of three through eighteen.”
Chapters located in Mexico, Columbia, Osage Beach, St. Joseph, Sedalia, Blodgett and St. Louis.
Partnership of Hope
Visit Partnership of Hope Website
The Partnership for Hope Waiver serves adults and children and has an annual total waiver service cost limit per participant of $12,000.
State Medicaid
Missouri Division of DD
Visit Missouri Division of DD Website
The state of Missouri Division of DD has 5 waivers that service children with developmental disabilities.
View Comprehensive Waiver
View Comprehensive Waiver
The Comprehensive Waiver provides residential and individualized supported living services. This waiver does not have an individual cap on the amount of service an individual can receive throughout the year.
Missouri Children's Developmental Disabilities Waiver (MOCDD)
View Missouri Children’s Developmental Disabilities Waiver (MOCDD)
Missouri Children’s Developmental Disabilities Waiver (MOCDD) is issued by the Department of DD. To be eligible, the child must not be eligible for Medicaid under regular guidelines; must be under the age of 18; live with their parents/family; meet financial guidelines; be determined to have a permanent and total disability; be eligible for ICF/ID level of care; and be at risk of needing ICF/ID services if waiver services are not accessed.
Community Support Waiver
View Community Support Waiver
The Community Support Waiver helps people with developmental disabilities and may provide up to $28,000.00 a year for supports and services.
Partnership of Hope
Visit Partnership of Hope Website
The Partnership for Hope Waiver serves adults and children and has an annual total waiver service cost limit per participant of $12,000.
Early Intervention
First Steps
Visit First Steps Website
1-866-583-2392
First Steps is Missouri’s Early Intervention program that provides services to children birth to age 3 with disabilities or developmental delays.
Education
Missouri Department of Elementary and Secondary Education
Visit Missouri Department of Elementary and Secondary Education Website
Effective Practices Section
Visit Effective Practices Section Website
Within the Division of Learning Services, the Office of Special Education, the Effective Practices Section works with school districts to identify effective research and data-driven monitoring, accountability and assessment of instructional practices for students with disabilities.
MPACT
Visit MPACT Website
1-800-743-7634
MPACT is a statewide parent training and information center that serves parents of children with disabilities. MPACT’s primary goal is to assist parents in their effort to effectively advocate for their children’s educational rights and services.
Conservatorship
Missouri Protection and Advocacy Services (MO P&A)
Visit Missouri Protection and Advocacy Services Website
1-866-777-7199
MO P&A is a federally mandated system in the state of Missouri which provides protection of the rights of persons with disabilities through legally based advocacy.
The Missouri Bar
Visit The Missouri Bar Website
The Missouri Bar has information on guardianship and conservatorship.
Transition to Adult Services
Vocational Rehabilitation (VR) and Special Education
Visit Vocational Rehabilitation (VR) and Special Education Website
Vocational Rehabilitation (VR) and Special Education share responsibility in preparing youth with disabilities for the transition from school to post-high school employment, education, specialized training and independence. The local school district is primarily responsible for providing transition-related services while a student is still in school. However, for students with disabilities who are, or may be, eligible to receive vocational rehabilitation services, communication and collaboration with VR may help to ensure a smoother transition. VR’s role is primarily one of planning and preparing for when a student graduates or exits the school system.
Missouri Interagency Transition Team (MITT)
Visit Missouri Interagency Transition Team Website
1-573-751-0187
MITT was formed by the Office of Special Education at the Missouri Department of Elementary & Secondary Education to increase interagency collaboration at the state, regional, and local levels. The resources listed on this site are for those individuals with disabilities who are looking for any level of independent living whether from school age to adulthood.
Handicap Placard
Missouri Department of Revenue
Visit Missouri Department of Revenue Website
1-573-526-3669
Missouri Department of Revenue issues disabled placards and plates. Complete the application, signed by your child’s physician or therapist and complete the Physician’s Statement form. Both forms may be returned in person to any Missouri License Office or by mail.
Parent Recommended Resources
If you have favorite resources to share with others, please email that information and your experience to [email protected].
Recreation
Accessible Playgrounds
Six Flags St. Louis
Worlds of Fun and Oceans of Fun
Visit Worlds of Fun and Oceans of Fun Website
Worlds of Fun and Oceans of Fun have a comprehensive guide to help plan your visit to the park and utilize accessibility features.
Additional Resources
Missouri Rett Syndrome Families Facebook Page
Visit Missouri Rett Syndrome Families Facebook Page
The Missouri Rett Syndrome Families Facebook page is a private forum and is not moderated by International Rett Syndrome Foundation.