Oklahoma Resources
Family Empowerment Representatives | Treatment and Research Centers | OK 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.
Samantha Brant - Family & Community Engagement Manager, Rettsyndrome.org sbrant@rettsyndrome.org 
1-913-221-8157
Renee Farris, volunteer Family Empowerment Representative, Sparks, OK renee.farris@ge.com
1-405-824-2458
Kristina Hackney, volunteer Family Empowerment Representative, Oklahoma City, OK kristina@stylishjava.com 1-405-675-0748
Treatment and Research Centers
Clinics & Clinical Trials - None at this time
State Agencies - Oklahoma
Local Service Agencies
1-405-521-6267
DDS serves persons age 3 and up with a primary diagnosis of intellectual disabilities.
1-405-521-6267
Developmental Disabilities Services Division offers a wide array of community services for individuals with developmental disabilities and their families. Services are individualized to meet each person's needs. To apply for services, contact your area DDS office.
Handicap Placard
DMV Handicap placards are issued by the Department of Public Safety (DPS). To apply, complete the Physical Disability Parking Placard Application and return by mail to: Department of Public Safety, Driver Compliance Division - Physical Disability, P.O. Box 11415, Oklahoma City, OK 73136. This takes about 20 business days to process and you will receive the handicap placard in the mail.
State Medicaid
TEFRA Children Waiver provides services to children who would otherwise require care in an institution with any type of disability. You can apply at any Oklahoma Department of Human Services office. This program waives parent income. Call ahead to see if you need an appointment.
1-800-522-1075 Enid/Oklahoma City 1-800-522-1086 Tulsa 1- 800-522-1086 Pauls Valley
This DDSD waiver serves children over the age of 3 with a developmental disability. Parent income does not waive parent income. To apply call the area in which you live.
IHSW allows individuals and families to select services necessary for each individual to remain in his or her own home or family home. Children ages 3-17 may receive services through the IHSW-Children waiver and individuals over 18 may receive services through the IHSW-Adult waiver.
Early Intervention
Sooner Start Early Intervention Program is designed to meet the needs of children with developmental delay or disability from birth to age 3. For more information, call the Joint Oklahoma Information Network at 211 or contact the nearest regional office listed.
Education
Oklahoma State Department of Education Special Education Services serves children ages 3-21 in the public school system.
Parent and Family Resources offers resources for anyone enrolled in special education.
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.
Legal Aid Services of Oklahoma can help with the guardianship process
Transition to Adult Services
The School-to-Work Program helps students with disabilities prepare for employment and life after high school. The transition process must begin at the start of ninth grade or when the student turns 16, whichever comes first.
OPC can help families with the transition process.
Parent Recommendations
If you have favorite resources to share with others, please email that information and your experience to areed@rettsyndrome.org
Medical Professionals
This site has a comprehensive listing of clinical studies involving Rett Syndrome patients or families.
Amber Stocco, MD Pediatric Neurology, Oklahoma City
1-405-713-7060
1-405-271-6549
Joseph Davey, MD Orthopedic Surgery, Oklahoma City
1-405-271-2669
1-405-692-1222
Therapy ( PT, OT, Speech, Hippotherapy and Aquatherapy)
JD McCarty Center (PT, OT, Aquatic Therapy), Norman OK
1-405-307-2800
Legal Resources
1-405-525-7755 Oklahoma City 1-918-743-6220 Tulsa
ODLC protects, promotes and expands the rights of people with disabilities.
Recreation
More Parent Recommendations
Rocky Mountain Rett Association (RMRA) is a member-based organization serving the Rocky Mountain region dedicated to improving the quality of life for girls and their families impacted by Rett Syndrome. We achieve this by providing supportive services and resources to girls and their families, engaging in advocacy, education and awareness efforts, and raising funds to support the search for a cure and improved treatment options.
IRSF Oklahoma Facebook page is private - click and ask to join!
1-405-744-9748
Oklahoma ABLE Tech is a statewide Assistive Technology Program located at Oklahoma State University. They can assist with devices on loan, demonstrations, exchanges, and device funding.