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.

National Family Empowerment Representative

Samantha Brant – Family & Community Engagement Manager, International Rett Syndrome Foundation
[email protected]  1-913-221-8157

Treatment and Research Centers

Your child may be able to participate in studies and trials to advance treatment and knowledge of Rett syndrome. There are clinics specializing in Rett syndrome that can help you provide Rett-specific care for your child.

Clinical Trials

Rett syndrome clinical trials are available at various stages in the process. Please visit our Clinical Trial page for current enrollment status.

State Agencies & Resources

State Medicaid

Montana Medicaid

Visit Montana Medicaid Website
Medicaid is run by DPHHS (Montana Department of Public Health and Human Services). Healthy Montana Kids Plus (HMK Plus) is health coverage for low-income children in Montana and is also run by DPHHS.

Apply For Medicaid

Apply For Medicaid
You can apply by phone or in person at your local Office of Public Assistance.

Department of Public Health and Human Services online application

View Department of Public Health and Human Services online application
Apply for HMK Plus, Medicaid, SNAP, Healthy Montana Kids, Cash assistance, tax credits and health insurance assistance.

View DDP Medicaid Waiver

View DDP Medicaid Waiver
Provides day supports and activities for individuals with IDD/DD, ages 0 – no max age. To apply, contact your local developmental disabilities regional office.

Montana Big Sky Home and Community Based Services Program

View Montana Big Sky Home and Community Based Services Program
1-800-219-7035 Mountain Pacific Quality Health Foundation
Montana Big Sky Home and Community Based Services Program The Home and Community Based Services program allows people, who would otherwise be institutionalized, to live in their own home and community. The Case Management Team (CMT) consist of a nurse and social worker and provide a holistic approach to care planning. They look at each individual’s medical and psychosocial needs and then develop a plan of care based on the person’s needs and choices. To apply for HCBS, contact the Mountain Pacific Quality Health Foundation.

SHIP Montana

Visit SHIP Montana Website
Montana State Health Insurance Assistance Program (SHIP) is a free health-benefits counseling and advocacy service for Medicare beneficiaries and their families or caregivers. They educate, advocate for, counsel and empower people to make informed benefit decisions. They can help you with Medicare and waiver questions.


Office on Aging

Visit Office on Aging Website
The Montana Legal Services Developer in the Office on Aging provides elder law training and resources for seniors, family members and social outreach workers. The program also develops pro bono and local legal services referrals, training materials and telephone assistance.

Transition to Adult Services

Disability Employment and Transitions Youth Services

Visit Disability Employment and Transitions Youth Services Website
To apply, students may ask their teacher or family to help schedule an appointment with the VRBS counselor who travels to their school or they can contact the Vocational Rehabilitation office that serves their area.
View Vocational Rehabilitation Offices

Handicap Placard

Disability Permit/License Plate Application

View Disability Permit/License Plate Application
How to Apply for or Renew a Physical Disability Parking Permit Placard

Have a licensed physician, physician’s assistant, or advanced practice registered nurse complete and sign the Disability Permit/License Plate Application, Complete and sign the remainder of the form, Mail the completed form to the Motor Vehicle Division. (P.O. Box 201430, 302 N Roberts, Helena MT 59620-1430) To renew, complete the three steps listed above.
View How to Apply for or Renew Physical Disability Plates
View Local County Treasurer’s Offices

If you have favorite resources to share with others, please email that information and your experience to [email protected].

Legal Resources & Information

Disability Rights Montana

Visit Disability Rights Montana Website
Disability Rights Montana provides information and referral, individual advocacy, legal representation, outreach and training, and systems advocacy.

Additional Resources

Rocky Mountain Rett Association

Visit Rocky Mountain Rett Association Website
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
[email protected]