Idaho Resources

Family Empowerment Representatives| Treatment and Research Centers |ID 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

Shauna Murray, volunteer Family Empowerment Representative, Nampa  shaunaemurray@gmail.com  1-208-890-5350


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 - Idaho


Local Service Agencies

The Department of Health and Welfare

The Department of Health and Welfare can help provide a number of services to assist adults and children with developmental disabilities. Some of these services include: physical and occupational therapy, housing and living supports, chore services, employment support, environmental modifications, home delivered meals, nursing services, respite care, family education, crisis intervention, and in-school supports.

Service Coordination for Children

Service coordination for children with special health care needs is available for children eligible for Medicaid Enhanced Benefits (ages 3 and above) who meet certain criteria. If the child has limited access to gain services or can’t coordinate or maintain services on their own or through other means, they might be eligible for service coordination services. The service coordinator identifies the need for assistance in gaining and coordinating access to care and services appropriate to the needs of the individual.

Idaho Children's Special Health Program (CSHP)

1-877-887-3075

The Idaho Children's Special Health Program (CSHP) provides consultation, information, technical assistance and referral services for the families of children who have chronic illnesses and disabilities. CSHP works with families, providers and communities to help establish and maintain a system of information, provide referral and follow-up services.  You can apply online.  

Idaho Parent's Unlimited

 IPUL supports, empowers, educates and advocates to enhance the quality of life for Idahoans with disabilities and their families.

The Arc Idaho

The Arc is committed to securing the opportunity to choose and realize their goals of where and how to learn, live, work and play for all people with intellectual and developmental disabilities.


Handicap Placard 

Idaho Department of Motor Vehicles

1-208-334-8000

The Idaho Department of Motor Vehicles issues special parking permits and plates. Disability parking permits must be applied for in the name of the disabled person or by the parent or guardian of the disabled person. The applicant must submit a properly completed application containing a doctor’s certification of a serious or permanent disability which impairs the ability to walk. Forms can be obtained at any Department of Motor Vehicles office. Temporary disability parking permits are provided for people whose ability to walk is seriously, but temporarily, impaired. The permit is issued to anyone whose medical care plan requires the use of crutches, wheelchairs, or other devices intended as an aid for walking. An application containing a doctor’s certification of a temporary disability which impairs the ability to walk must be filled out for a permit to be issued. Temporary permits are only valid for 6 months. 

Idaho Application for Disability Placards and Plates


State Medicaid 

Apply for Medicaid

1-877-456-1233

You can apply for Medicaid with just your name, address and signature on an application for assistance, or you may use any of the following options to apply for Medicaid and other Health Coverage Assistance options: idalink portal, printable application, in person , via telephone,  or visit YourHealthIdaho.org

idalink portal

Printable Application for Medicaid

Health and Welfare Office Locations

To apply in person, visit your local Health and Welfare Office.

YourHealthIdaho.org 

1-855-944-3246

Children's System Redesign

This site has an overview of the redesigned Medicaid system of services for children with developmental disabilities.

Waiver Information

Idaho currently has three waiver programs that serve children. Two are 1915(c) HCBS waivers, and one is a TEFRA/Katie Beckett Waiver. All waive parent income and are open to children of all incomes.

Katie Beckett Medicaid

Katie Beckett Medicaid, also known as Home Care for Certain Disabled Children, enables severely disabled children to be cared for at home and be eligible for Medicaid based on the disabled child’s income and assets alone. To apply for Katie Beckett Medicaid, contact your local Idaho Department of Health and Welfare’s Regional Medicaid Services office. You can call to get the contact information of your local Regional Medicaid Services office.

Children's Developmental Disabilities (DD) Services Program

Children who are Medicaid eligible and have a developmental disability may qualify to receive home and community-based services through the Children's Developmental Disabilities (DD) Services Program. Children’s DD services can be delivered via two pathways – the Traditional Pathway or the Family-Directed Pathway.

Application for DD Children's Services

1-877-333-9681 Central Intake

Application for DD Children's Services If you have questions regarding the status of your DD application, please contact central intake. You may also email any other questions to the DD Services team directly at ChildrensDDServices@dhw.idaho.gov.

Family-Directed Supports

In the Family-Directed Supports option, a child determined eligible for services will be assigned an individualized budget based on their child’s strengths and assessed needs. Using this individualized budget, a family can plan a year of supports, therapy, services and goods to enable their child to live a full and inclusive life. The flexibility in this model allows parents to choose, design and direct services outside of the traditional menu of services. If you would like more information on family-directed services, contact your local FACS Case Coordinator .

Local FACS Case Coordinator Contacts

DD Services Info

The first step in applying for DD services is to fill out the Application for Assistance. Through this application you can apply for the following services for children and adults with developmental disabilities:Health Coverage (Medicaid) - The Medicaid Enhanced Plan is the plan for children and adults with disabilities or special health needs also, Cash Assistance - for emergency situations, families with children, and the elderly, blind, or disabled.

CDD Information 

Once your child has been verified to be eligible for Medicaid, you will need to fill out the Children's Developmental Disabilities Application and send it to your regional Family and Community Services (FACS) Developmental Disability Program. If you have any questions or need more information, please contact your regional Family and Community Services Developmental Disability Program. Once you have completed and returned the application, the regional FACS staff will forward it to your Independent Assessment Provider (IAP) who will review it and contact you for more information or to schedule an appointment.

Children's Developmental Disabilities Application

Regional FACS Developmental Disability Program Contacts

 1-208-334-5512


Early Intervention

Idaho's Infant Toddler Program (ITP)

Idaho's Infant Toddler Program (ITP) coordinates a system of early intervention services to assist Idaho children birth to three years of age who have a developmental delay or who have conditions that may result in a developmental delay.  Contact the  Idaho CareLine by dialing 2-1-1 for more information.

Local ITP Contacts


Education

ID Special Education

 1-208-332-6914

To enable all students to achieve high academic standards and quality of life, the Special Education Team works collaboratively with districts, agencies, and parents to ensure students receive quality, meaningful, and needed services.  Contact Dr. Melanie Reese mreese@sde.idaho.gov  for more information.

Special Education Manual

Special Education Forms and Information

School-based Services

School-based services are health-related and rehabilitative services provided to children with disabilities who receive services under the Individuals with Disabilities Education Act (IDEA).  These services are provided by school districts, and charter schools and are considered medically necessary for children to participate in their educational program SchoolBasedServices@dhw.idaho.gov


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.

Guardianship/Conservatorship Website

 1-208-947-7452

This website has been developed to provide a central place where individuals can find resources about becoming a guardian and/or conservator, read the administrative rules, and find other relevant materials.

Forms: Guardianship / Conservatorship


Transition to Adult Services

Secondary Transition

1-800-883-4673

The goal of Secondary Transition is to ensure that all children with disabilities have available to them a free appropriate public education that emphasizes special education and related services designed to meet their unique needs and prepare them for further education, training, employment, and independent living.

Idaho Transition Resource Links

AbilityPath.org

AbilityPath.org is an online hub and special needs community for parents and professionals to learn, connect and live a more balanced life – through all phases of a child’s growth and development. The website combines social networking features with expert content from AbilityPath’s team of educators, parents, therapists and medical professionals.


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)   

Rian Chatterton, Speech Therapist, Boise Speech and Hearing Clinic


1-208-376-3591
"Rian Chatterton works with 2 girls that have Rett syndrome in the area and numerous AAC device users.  She is amazing, not to mention incredibly devoted to her clients. She worked very hard to help my daughter get her TobiDynovox including a successful appeal after our first request was denied."

Nicole Nickell, Hydrotherapy, Lullaby Waters-Boise


 1-208-949-3481        nicole@lullabywaters.com


"Nicole Nickell is passionate about water therapy and believes wholeheartedly in the benefits it can provide.  My daughter's core strength and motor planing have improved significantly since starting water therapy, not to mention the joy she gets from the water!"


Donna Urrabazo, Occupational Therapy, Idaho Therapy Source- Nampa


> 1-208-442-2525
"Donna Urrabazo is always offering new and creative ideas to encourage my daughter's hand use, even after seeing her for 5 years, she still has great ideas.  She is so patient and truly understands apraxia that accompanies Rett syndrome."


Legal Resources

DisAbility Rights Idaho

DisAbility Rights Idaho assists people with disabilities to protect, promote and advance their legal and human rights, through quality legal, individual, and system advocacy.


Recreation


More Parent Recommendations

Idaho IRSF Rett Syndrome Families Facebook page

 click and ask to join!