North Dakota

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
sbrant@rettsyndrome.org  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

Local Service Agencies

Division of Children's Special Health Services (CSHS)

1-701-328-4814
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

Visit Developmental Disabilities Services Website
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.

Visit Developmental Disabilities Regional Offices Website

Application for Assistance Guidebook

View or Download 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's Health Insurance Program (CHIP)

View Children’s Health Insurance Program (CHIP) Website
1-877-543-7669

State Medicaid

Children with Disabilities Medicaid Coverage

View Children with Disabilities Medicaid Coverage Website
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.

Visit Local County Social Service Offices Website

Application for Medicaid

View or Download the Application for Medicaid
You can also visit your local County Social Services Office for an application.

Medicaid Waiver HCBS

Visit Medicaid Waiver HCBS Website
1-701-328-8930
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

Visit Children with Medically Fragile Needs Waiver Website
1-701-328-4630 Program Manager
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.

Traditional ID DD HCBS Waiver Application

View or Download the Traditional ID DD HCBS Waiver Application
1-800-755-8529

Early Intervention

Early Intervention North Dakota

Visit Early Intervention North Dakota Website
1-800-755-8529
To refer a child, please contact the regional human service center that serves your area and ask to talk to the Developmental Disabilities staff.

Education

North Dakota Special Education

Visit North Dakota Special Education Website

Visit Students and Parents Page
The purpose of this page is to be a ‘one-stop shop’ for information on services and programs managed by the Department of Public Instruction that affect students and parents.

Transition to Adult Services

Secondary Transition

Visit Secondary Transition Website
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.

Handicap Placard

North Dakota DOT

Visit North Dakota DOT Website
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.

View or Download the Application for Mobility-Impaired Parking Permit 

If you have favorite resources to share with others, please email that information and your experience to areed@rettsyndrome.org.

Additional Resources

Rocky Mountain Rett Association (RMRA)

Visit Rocky Mountain Rett Association (RMRA) Website
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.