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
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
Division of Children's Special Health Services (CSHS)
The Division of Children’s Special Health Services (CSHS) is located within the Community Health Section in the North Dakota Department of Health (NDDoH). The purpose of CSHS is to provide services for children with special health care needs and their families and promote family-centered, community-based, coordinated services and systems of healthcare.
Developmental Disabilities Services
Developmental Disabilities Services provides support and training to individuals and families in order to maximize community and family inclusion, independence, and self-sufficiency; to prevent institutionalization; and to enable institutionalized individuals to return to the community.
Application for Assistance Guidebook
You may apply for any or all of these programs with this online application: Temporary Assistance for Needy Families (TANF), Child Care Assistance Program (CCAP), Supplemental Nutrition Assistance Program (SNAP), Healthy Steps (Children’s Health Insurance Program – CHIP),Medicaid, Basic Care Assistance Program (BCAP).
Children with Disabilities Medicaid Coverage
This program allows families with children to “buy-into” the Medicaid program by paying a monthly premium based on the family’s income. The program also covers mental health and some dental services. A child must be under the age 19. For information, contact your local county social service office.
Application for Medicaid
Medicaid Waiver HCBS
Medicaid Waiver HCBS Provides adult day care, adult residential care, case management, homemaker, respite care, supported employment, adult family foster care, chore, emergency response, environmental mods, extended personal care, family personal care, home delivered meals, non-medical transportation, specialized equipment and supplies, and transitional living. You can apply by phone.
Children with Medically Fragile Needs Waiver
The goal of this waiver is to assist families in keeping their child (Age 3-18) home instead of having to place them in a nursing home or hospital to receive needed care. This waiver is “parent- driven” meaning the parent determines what their family can or cannot do, and the parent identifies what it will take for the family to be able to keep their child at home. Contact the Program Manager to complete an application.
Transition to Adult Services
Transition planning for the movement from high school to adult living is required for all students receiving special education services. IEP teams must now include transition planning in the first IEP that will be in effect when the child is 16 years of age, or younger if deemed appropriate by the IEP team.
North Dakota DOT
North Dakota DOT issues handicap placards and plates. To apply for a handicap placard or license plate, you will need to complete the Application for Mobility-Impaired Parking Permit, which must include medical certification. Submit your application by mail or in person to your local ND motor vehicle office.
Parent Recommended Resources
If you have favorite resources to share with others, please email that information and your experience to firstname.lastname@example.org.
Rocky Mountain Rett Association (RMRA)
Rocky Mountain Rett Association (RMRA) is a member-based organization serving the Rocky Mountain region dedicated to improving the quality of life for girls and their families impacted by Rett Syndrome. We achieve this by providing supportive services and resources to girls and their families, engaging in advocacy, education and awareness efforts, and raising funds to support the search for a cure and improved treatment options.