North Dakota Resources

Family Empowerment Representatives | Treatment and Research Centers | ND 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


Treatment and Research Centers

Clinics & Clinical Trials - none at this time 


 State Agencies - North Dakota


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 health-care. 

CSHS Brochure

Family Voices of North Dakota (FVND)

 1-888-522-9654

Family Voices of North Dakota (FVND) is a statewide health information and education center for families who have children with a special health need or disability from birth to age 26 and for the professionals that serve them. FVND is home to ND Parent to Parent and the Family to Family Health Information and Education Center (F2FHIEC). 

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.

Developmental Disabilities Regional Offices

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)

  1-877-543-7669


Handicap Placard 

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.

Application for Mobility-Impaired Parking Permit 


State Medicaid   

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.

Local County Social Service Offices

Application for Medicaid

You can also visit your local County Social Services Office for an application.

Medicaid Waiver HCBS

 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

 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

 1-800-755-8529


Early Intervention

Early Intervention North Dakota

 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. 

Developmental Disabilities Regional Offices 

Early Childhood Special Education ( Ages 3-5) 

Understanding Early Childhood Transition: A Guide for Families and Professionals


Education   

North Dakota Special Education

Special Education Directory

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.


Conservatorship

North Dakota Guardianship

 1-800-451-8693


Transition to Adult Services   

Secondary Transition

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.


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 


Recreation


More Parent Recommendations  

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.