Kansas Resources

Family Empowerment Representatives  | Treatment and Research Centers | KS 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  https://www.rettsyndrome.org/image/icons/icon-phone.png1-913-221-8157

Shannon Stoiber- Darrah, volunteer Family Empowerment Representative,  kcrettmom@yahoo.com  1-913-302-7498

Regional Rett Syndrome Associations

Rocky Mountain Rett Association

The Rocky Mountain Rett Association (RMRA) was founded for three reasons; to fund research for the development of treatments & cures for Rett Syndrome and related MeCP2 disorders,  to support families suffering from Rett,  and to raise awareness for Rett Syndrome

Rocky Mountain Rett Association
PO Box 1294
Morrison, Colorado 80465
(720) 234-7673

Treatment and Research Centers

Nearest 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.

Rett Clinic at Children's Hospital Colorado

The Rett Clinic at Children's Colorado was established in 2011 thanks to a generous gift from the Rocky Mountain Rett Association. Many doctors and specialists come together to provide coordinated care and convenience for the child and family (about 14 providers are at the first appointment). 

The Rett Clinic is located in the Multidisciplinary Clinic at Children’s Colorado, which means that the doctors and specialists come directly to the patient and family (and not the other way around) to provide streamlined care for children with complex needs.  The clinic is led by Director, Dr. Tim Benke. For appointments, contact Tristen Dinkel, RN, Clinic Coordinator at rettclinic@childrenscolorado.org or call 720-777-4363.

Watch the Colorado Clinic video.


Clinical Trials - none at this time

State Agencies - Kansas

Local Service Agencies

Aging and Disability Resource Center (ADRC)

ADRC is a trusted source of information where people of all ages, abilities and income levels - and their caregivers - can go to obtain assistance in planning for their future long-term service and support needs.

Community Options Specialists

 ADRC provides individual personalized Options Counseling Services through local Community Options Specialists who can meet with you to help you sort through your options and connect you to services. 

ADRC Call Center


 ADRC has a statewide call center that is operated by staff trained in community resource information. The call center is a wealth of resource information for community services (in-home services, transportation, home delivered meals, etc.). Call center staff can link individuals to a local Options Counselor or to appropriate services and supports (ex.: PACE or KanCare providers, home health agencies, etc.). The call center is answered Monday - Friday 8 a.m.-5 p.m. and individuals can leave a message after hours. 

Kansas Special Health Care Needs (SHCN) Program


The Kansas Special Health Care Needs (SHCN) Program SHCN provides specialized medical services to infants, children and youth up to age 21 who have eligible medical conditions. Services may include diagnostic evaluations, treatment services or care coordination and must be prior authorized. 


FamiliesTogether assists Kansas parents and their children who have disabilities or special health care needs.

The Dream Factory of Greater Kansas City

Since 1985, the Dream Factory of Greater Kansas City has been dedicated to making dreams come true for critically or chronically ill children. As a 100 percent volunteer organization, granting dreams is their mission.

Handicap Placard

Kansas Department of Revenue (DOR)

The Kansas Department of Revenue (DOR) issues the placards and license plates. Your doctor's medical certification will determine whether you get a temporary or permanent permit. You can apply for a handicap parking placard from the Kansas DOR by mail or in person. Mail or take your application to your local KS county treasurer’s office.

County Treasurer’s Office

State Medicaid 

Kansas Medicaid Waivers

Kansas currently has six waivers that are open to children. All are HCBS Medicaid waivers and these programs waive parental income.

TA Program

The TA Program serves individuals ages 0 through 21 years who are chronically ill or medically fragile and dependent upon a ventilator or medical device and who require ongoing daily care by a nurse comparable to the level of care provided in a hospital setting; or an individual who is at imminent risk of hospitalization, whose illness or disability, in the absence of home care services, would require admission to a hospital.

Children's Resource Connection


Children's Resource Connection Contact Children's Resource Connection for information about TA program and eligibility. crctaks@cox.net 

Home and Community Based Services Intellectual/Developmentally Disabled (I/DD) Program


The Home and Community Based Services Intellectual/Developmentally Disabled (I/DD) program serves individuals age five and older who meet the definition of intellectual disability. The "single point of entry" into the HCBS I/DD Program in Kansas is your local Community Developmental Disability Organization (CDDO).  For more information, email hcbs-ks@kdads.ks.gov.

CDDO Contacts

Physically Disabled (PD) Program


The Physical Disabilities Program serves individuals age 16 to 65 years of age who meet the criteria for nursing facility placement due to their physical disability, who are determined disabled by social security standards, and who are Medicaid eligible. Contact your local ADRC to find out about the Physical Disabilities Program.  You can apply through your local CCDO.  For more information, email John.Barry@kdads.ks.gov.

Local ADRC Contacts


Individuals with disabilities applying for KanCare who believe they may qualify to receive long-term services and supports, Home- and Community-Based Services (HCBS), should fill out a paper application to submit to KDHE rather than apply electronically.

KanCare Application


The paper application provides a greater amount of detail on how to apply for the Medicaid waiver in-home services. If you think you would qualify for HCBS services, make sure you check the box on Page 4 of the print-out that asks: "Does this person need help with nursing home costs or in-home care?" 

HCBS/ MFP Eligibility


For individuals who are interested in a Home and Community Based Services (HCBS) program (Frail Elderly, Physically Disabled and those with Traumatic Brain Injury), or Money Follows the Person (MFP), the ADRC can conduct the functional assessment needed to determine eligibility for the appropriate HCBS program. 

Early Intervention 

Kansas Infant Toddler Services

Kansas Infant Toddler Services is administered by the Kansas Department of Health and Environment (KDHE). KDHE provides early intervention services for infants and toddlers with disabilities (birth through 2) and their families. Contact your local agencies for services.

Infant Toddler Services Local Agencies

Infant-Toddler Resources & Links


Kansas Special Education Process Handbook

The Kansas Special Education Process Handbook was developed to provide guidance, resources and supports necessary for those professionals who work to improve results for exceptional children.

Kansas Special Education Services


Kansas Special Education Services For more information, contact Colleen Riley criley@ksde.org.


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.

Kansas Guardianship Program (KGP)


KGP offers information and advocacy services to assist with the guardianship process. 

Transition to Adult Services

The transition process should begin by age 14 and information about the student’s needs during the transition process should be included in the IEP during that process. By 16, the IEP must include a coordinated set of services designed specifically to transition students from school to post-school outcomes. The IEP must include a statement of needed transition services and any external agency involvement. The Kansas definition of an IEP says that the transition IEP should be a part of the general IEP, and not a separate plan. It should be coordinated in accordance with the related services discussed in the general IEP of the student. However, it should be specific to post-secondary goals and should be geared towards preparation for the future and goals for future that are relevant to the individual’s strengths and interests.

PBS Kansas Resources and Tools for Transitioning to Adulthood

Vocational Rehabilitation (VR) 

Vocational Rehabilitation (VR) services empower Kansans with disabilities to become gainfully employed and self-sufficient.

Application for VR services

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.

Therapy ( PT, OT, Speech, Hippotherapy and Aquatherapy)

Legal Resources

Disability Rights Center of Kansas (DRC)

The Disability Rights Center of Kansas (DRC) is a public interest legal advocacy agency empowered by federal law to advocate for the civil and legal rights of Kansans with disabilities.


More Parent Recommendations 

Kansas IRSF Rett Syndrome Families Facebook Page 

Click and ask to join