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, Rettsyndrome.org
Family Empowerment Representative
Shauna Murray, volunteer Family Empowerment Representative, Nampa email@example.com 1-208-890-5350
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.
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
Local Service Agencies
The Department of Health and Welfare
Visit The Department of Health and Welfare Website
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
Visit Service Coordination for Children Website
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)
Visit Idaho Children’s Special Health Program Website
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
Visit Idaho Parent’s Unlimited Website
IPUL supports, empowers, educates and advocates to enhance the quality of life for Idahoans with disabilities and their families.
The ARC Idaho
Visit The ARC Idaho Website
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.
Apply for Medicaid
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: idaholink portal, printable application, in person, via telephone, or visit YourHealthIdaho.org.
Printable Application for Medicaid
View Health and Welfare Office Locations
To apply in person, visit your local Health and Welfare Office.
Visit YourHealthIdaho.org Website
Children's System Redesign
Visit Children’s System Redesign Website
This site has an overview of the redesigned Medicaid system of services for children with developmental disabilities.
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
Visit Katie Beckett Medicaid Website
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
Visit Children’s Developmental Disabilities (DD) Services Program Website
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.
View 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.
Visit Family-Directed Supports Website
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.
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 emergencies, families with children, and the elderly, blind, or disabled.
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.
View Regional FACS Developmental Disability Program Contacts
Idaho's Infant Toddler Program (ITP)
Visit Idaho’s Infant Toddler Program Website
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.
ID Special Education
Visit ID Special Education Website
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 firstname.lastname@example.org for more information.
View 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
Visit Guardianship/Conservatorship Website
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.
Transition to Adult Services
Visit Secondary Transition Website
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.
Visit AbilityPath.org Website
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.
Idaho Department of Motor Vehicles
Visit Idaho Department of Motor Vehicles Website
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.
Parent Recommended Resources
If you have favorite resources to share with others, please email that information and your experience to email@example.com.
Rian Chatterton, Speech Therapist, Boise Speech and Hearing Clinic
Visit Rian Chatterton, Speech Therapist, Boise Speech and Hearing Clinic Website
“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
Visit Nicole Nickell, Hydrotherapy, Lullaby Waters-Boise Website
“Nicole Nickell is passionate about water therapy and believes wholeheartedly in the benefits it can provide. My daughter’s core strength and motor planning have improved significantly since starting water therapy, not to mention the joy she gets from the water!”
Legal Resources & Information
DisAbility Rights Idaho
Visit DisAbility Rights Idaho Website
DisAbility Rights Idaho assists people with disabilities to protect, promote and advance their legal and human rights, through quality legal, individual, and system advocacy.
Idaho Rettsyndrome.org Families Facebook Page
View Idaho Rettsyndrome.org Families Facebook Page
Click and ask to join!
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