Nebraska Resources

Family Empowerment Representatives  | Treatment and Research Centers | NE 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

Terri and Dave Larson, volunteer Family Empowerment Representatives, terri@plumstreet.com  1-402-474-4855


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
info@rmrett.org 


Treatment and Research Centers


Nearest Clinics

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 - Nebraska


Local Service Agencies

Department of Health and Human Services Division of Developmental Disabilities (DDD)

1-877-667-6266

The DDD provides funding and oversight for community-based services. The Division also operates sites providing services for individuals with developmental disabilities.

Disabled Children's Program (DCP)

DCP is a program that serves the needs of children with disabilities by paying for non-medical services. These services need to be related to the child’s disability. A worker helps the family develop a plan for the needed services. For questions about DCP, contact the Medically Handicapped Children's Program (MHCP) in your area.

Medically Handicapped Children's Program (MHCP)

MHCP provides specialized medical services for families with children with disabilities or ongoing health care needs. Services may include services coordination/case management, specialty medical team evaluations, access to specialty physicians, and payment of treatment services.

MHCP Offices and Contact Information

Disabled Persons and Family Support (DPFS)

1-402-471-9220

DPFS provides up to $300 a month of funding for services to individuals with disabilities to help them continue to live independently or help families stay together. Call to apply.

Lifespan Respite Subsidy Program

1-866-737-7483

This program pays for respite services to give the primary caregiver a temporary break.  Respite means the provision of short-term relief to primary caregivers from the demands of ongoing care for an individual with special needs. The program serves people of all ages. 


Handicap Placard

DMV Nebraska

To apply for a handicap placard in Nebraska, have a physician fill out the application and submit by mail to Nebraska Department of Motor Vehicles Department; Driver and Vehicle Records Division; Attn: Handicap Parking Permits; P.O. Box 94789; Lincoln, NE  68509-4789.

Application for Handicap Parking Permit


State Medicaid 

Katie Beckett Waiver

 1-800-358-8802

This program provides home health nursing and other medical services to children who otherwise would be hospitalized because of their high level of health care needs. Youth on the Katie Beckett program are eligible for Medicaid. Contact Home and Community Services for more information or to apply. 

Aged and Disabled Waiver

This is a program that offers an array of services to support people in their homes. To apply, contact your local DHHS office and let them know you would like to apply.

DHHS Offices and Contact Information

ACCESSNebraska

1-855-632-7633

ACCESSNebraska is a convenient, online way to apply for Nebraska Medicaid. 

ACCESSNebraska Services


Early Intervention

Nebraska Early Development Network (EDN)

1-888-806-6287

Nebraska Early Development Network (EDN) Babies Can't Wait Program  EDN serves children from birth to age three. A child is eligible if he or she is not developing typically, or has been diagnosed with a health condition that will affect his or her development. To apply, call or visit the Planning Region Team Map to find the office that services your area.

Planning Region Team Map


Education

Nebraska Department of Education Office of 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.

Supreme Court of Nebraska

1-402-471-2671

The Supreme Court of Nebraska has information on guardianship and conservatorship.


Transition to Adult Services

Nebraska Transition Youth to Young Adult

 1-402-595-2092

This program is designed to assist students and their 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.


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


Legal Resources

The ARC of Nebraska

1-402-475-4407

The ARC of Nebraska provides advocacy to people with disabilities and their families. 


Recreation 


More Parent Recommendations

Nebraska Strollathon for Rett Syndrome Facebook Page

Rett Syndrome Families of Nebraska Facebook Page

This page is private, click and ask to join.