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.

Brittney Gibson, Rettsyndrome.org  bgibson@rettsyndrome.org  1-800-818-7388

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

Developmental Disability Services (DDS)

1-405-521-6267

DDS serves persons age 3 and up with a primary diagnosis of intellectual disabilities. 

Developmental Disabilities Services Division

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. 

 DDS Area Offices


Handicap Placard

Department of Public Safety (DPS)

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.

Physical Disability Parking Placard Application


State Medicaid 

TEFRA Children Waiver

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.

Department of Human Services Offices 

Community Waiver

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.

In Home Supports Waivers (IHSW)

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

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

Oklahoma State Department of Education Special Education Services serves children ages 3-21 in the public school system.

Parent and Family Resources

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

Legal Aid Services of Oklahoma can help with the guardianship process


Transition to Adult Services

Oklahoma Department of Rehabilitation 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.

Oklahoma Parents Center (OPC)

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

ClinicalTrials.gov

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 

John Grunrow, MD  Gastroenterology, Oklahoma City

1-405-271-6549

Joseph Davey, MD  Orthopedic Surgery, Oklahoma City 

1-405-271-2669

Brian Malloy, DDS  Oklahoma City

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

Oklahoma Disability Law Center (ODLC)

1-405-525-7755 Oklahoma City  1-918-743-6220 Tulsa

ODLC protects, promotes and expands the rights of people with disabilities. 


Recreation

Frontier City

Accessible playgrounds in Oklahoma


More Parent Recommendations

Rocky Mountain Rett Association (RMRA)

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

IRSF Oklahoma Facebook page is private - click and ask to join!

Oklahoma ABLE Tech

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.