Missouri

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
sbrant@rettsyndrome.org  1-913-221-8157

Family Empowerment Representative

Joyce Opinsky, volunteer Family Empowerment Representative
jopinsky@gmail.com 1-314-346-1323

Amanda Sommer, volunteer Family Empowerment Representative
sommer.als@gmail.com  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.

Natural History Study

St. Louis Children’s Hospital
1-314-454-4267
This study is led by Dr. Robin Ryther.  For more information, email rytherr@neuro.wustl.edu or call.

Travel Assistance for NHS Sites
1-781-333-1593

Marriott is working on establishing discounts for hotels near our clinical trial sites.  For more information, contact Ashley Lucchese, Marriott Sales Executive Ashley.Lucchese@Marriott.com.

Nearby hotels include: The Ritz Carlton, St Louis, Residence Inn St. Louis Galleria, SpringHill Suites St. Louis Brentwood

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 kmraz@wustl.edu.

Clinics

St. Louis Children's Hospital

Visit St. Louis Children’s Hospital Website
1-314-454-6120 Appointments, Sara Harrison – Clinic Coordinator
The St. Louis Children’s Hospital’s Rett Spectrum Clinic is a collaboration between Washington University School of Medicine and St. Louis Children’s Hospital.  Within a clinic visit, patients and their families will meet with several caregivers including neurology, therapy, and nutrition along with other specialists as needed.

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.

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

Recreation

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 Rettsyndrome.org.