Missouri Resources

Family Empowerment Representatives  | Treatment and Research Centers | MO 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

Joyce Opinsky, volunteer Family Empowerment Representative  joyce@gatewayshoes.com1-314-346-1323

Katie Busch, volunteer Family Empowerment Representative  Katie_busch@sbcglobal.net  1-573-578-7798 


Treatment and Research Centers


Clinics

 St. Louis Children's Hospital

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.

Clinical Trials

Please contact the trial site 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

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 


 State Agencies - Missouri


Local Service Agencies

Missouri Department of Health's Division of Developmental Disabilities (DD)

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. 1-800-207-9329

Developmental Disabilities Regional Offices

There are 11 Developmental Disabilities Regional Offices to help you determine eligibility.

Governor´s Council on Disability (GCD)

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. 

Available Disability Benefits 


Handicap Placard

Missouri Department of Revenue

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. 


State Medicaid 

Missouri Division of DD

The state of Missouri Division of DD has 5 waivers that service children with developmental disabilities.

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)

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

The Community Support Waiver helps people with developmental disabilities and may provide up to $28,000.00 a year for supports and services.

Missouri Department of Revenue

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

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

Effective Practices Section

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

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

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.

Missouri Protection and Advocacy Services (MO P&A)

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

The Missouri Bar has information on  guardianship and conservatorship.


Transition to Adult Services

Vocational Rehabilitation (VR) and Special Education

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)

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.


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

Accessible Playgrounds

Six Flags St. Louis

Worlds of Fun and Oceans of Fun

Worlds of Fun and Oceans of Fun have a comprehensive guide to help plan your visit to the park and utilize accessibility features.


More Parent Recommendations

 

Missouri Rettsyndrome.org Families Facebook

 

Missouri Rettsyndrome.org Families Facebook page is a private forum, moderated by Rettsyndrome.org. It is a closed group; ask to join!