Montana Resources

Family Empowerment Representatives  | Treatment and Research Centers | MT 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


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 - Montana


Local Service Agencies

Children's Special Health Services

Children's Special Health Services support development and implementation of systems of care for children and youth who have  chronic physical, developmental, behavioral or emotional conditions and who  require health and related services beyond that required by children generally.

CSHS Staff & Contact Information

Developmental Disabilities Program (DDP)

 1-406-444-2995

The Developmental Disabilities Program administers, provides funding and monitors a service system that supports individuals with developmental disabilities and their families.  Eligibility is determined through the Developmental Disabilities Program and is separate from other programs. Receiving assistance from other programs does not affect potential eligibility for services.

DDP Regional Offices

Montana Disability Determination Services (DDS)

 1-800-772-1213

The Montana Disability Determination Services (DDS) handles the medical eligibility for Social Security Disability claims.  These determinations are based on federal rules and regulations. All applications for benefits must be submitted through the Social Security Administration (SSA). 

Aging and Disability Resource Center

The overall goal of the ADRC Program is to empower individuals to effectively navigate their long-term services and supports options to make informed choices, to streamline access to long-term services and supports and organize the long-term support system.

ADRC Resource Directory

Navigating Montana’s Developmental Disabilities Program

A guide to understanding the Developmental Disabilities Services System in Montana.


Handicap Placard  

Disability Permit/License Plate Application

How to Apply for or Renew a Physical Disability Parking Permit Placard 

 1-406-444-3933

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. 

How to Apply for or Renew Physical Disability Plates

Have a licensed physician, physician’s assistant, or advanced practice registered nurse complete and sign the Disability Permit/License Plate Application,  mail the completed form to your county treasurer’s office, pay all applicable vehicle registration fees.  Recertification of a permanent disability is not required to renew physical disability plates.

Local County Treasurer's Offices 


State Medicaid   

Montana Medicaid

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

 1-888-706-1535

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

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.

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

 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

 1-800-551-3191

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. 


Early Intervention

Montana Milestones

 1-406-444-5647

Montana Milestones is the Part C Early Intervention Program.  An evaluation is conducted  to determine if your child is eligible for Montana Milestones.  Once a child is found eligible for Montana Part C Early Intervention, the family and the local early intervention provider’s team develop an Individualized Family Service Plan (IFSP).  Included within the IFSP are the services and supports the family will receive along with the roles and responsibilities of all those involved in developing the plan. To find out more about Montana Milestones Part C Early Intervention Program, please contact Montana’s Part C Coordinator,  Wendy Studt wstudt@mt.gov.


Education   

Montana Division of Special Education

 1-888-231-9393


Conservatorship

Office on Aging

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.

Information on Guardianship and Conservatorship


Transition to Adult Services   

Secondary Transition

Disability Employment and Transitions Youth Services

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.

Vocational Rehabilitation Offices

Goal Positioning System (GPS)

The GPS is an interactive, electronic document that helps students and their support teams navigate the entire transitions journey in a single glance on one page.


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 

Disability Rights Montana

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


Recreation


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