South Dakota Resources

Family Empowerment Representatives | Treatment and Research Centers SD 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 - South Dakota


Local Service Agencies

Health KiCC

1-800-305-3064

Health KiCC provides financial assistance for medical appointments, procedures, treatments, medications and travel reimbursement for children (under age 21) with certain chronic health conditions.  Care coordination services are also available upon request.  Email or call for application information. DOHcshshealthkicc@state.sd.us

South Dakota Parent Connection ( SDPC)

South Dakota Parent Connection ( SDPC) connects families caring for children/youth (ages birth to 26) with the full range of disabilities or special health care needs to information, training and resources in an environment of support, hope and respect.

Parent Training and Information Center (PTI) 

 1-800-640-4553

Parent Training and Information Center (PTI) helps parents receive appropriate education and services for their children ( Birth through age 26) with disabilities, works to improve education results for all children, trains and informs parents and professionals and connects children with disabilities to resources that address their needs. sdpc@sdparent.org 

Family to Family Health Information Center (F2F HIC)

Family to Family Health Information Center (F2F HIC) provides information and guidance to families, and the professionals who serve them, to access services and resources for children and youth with special health care needs.

Rural Health Outreach Project (RHOP) 

 1-800-640-4553

Rural Health Outreach Project (RHOP)  provides outreach and individual assistance to promote early and continuous identification of special health care needs, improved access to community-based systems of care and improved transition tools and options for youth in transition.

Community of Care (COC)

The Community of Care (COC) consortium is dedicated to creating a better South Dakota for children and youth with special health care needs (CYSHCN), their families, and the providers that support them.

 Center for Disabilities

1-605-357-1439

The Center for Disabilities is located within the Health Science Center in Sioux Falls, South Dakota and is under the umbrella of the University of South Dakota, Sanford School of Medicine. They provide activities that support people with disabilities to live, work, and fully participate in their communities. They also support parents, siblings, professionals and stakeholders in the community. 


Handicap Placard 

South Dakota DOR

1-605-773-3541

South Dakota DOR issues handicap placards and plates. A licensed physician must sign the application.  Submit a completed application to your local county treasurer’s office. There is no cost for either type of disabled reserved parking permit; an individual can request two permanent portable permits if they have more than one vehicle.

Physically Disabled Parking Permits and License Plates application


State Medicaid  

SD DSS Online System

1-800-318-2596

SD DSS Online System allows you to apply for Medicaid and CHIP and other low income assistance programs. You can apply to Medicaid and CHIP through HealthCare.gov or by phone.  You can also download forms then mail, fax, or take the application in person to a local Social Services office. 

Complete Online Application for DSS Services

Disabled Children's Program

1-605-773-4678

Disabled Children's Program provides South Dakota Medicaid for certain disabled children( under age 19) in South Dakota. The program is intended for children with disabilities who have medically fragile conditions requiring skilled nursing care in a medical facility if they were not being cared for at home. You can apply by phone.

Family Support Waiver

 1-800-265-9684

Family Support is not a single service, but rather a flexible constellation of services and supports which are customized to meet the varied and changing needs of each participant and family. john.new@state.sd.us

Family Support Application

Family Support contacts by region 

Home and Community Based Services 

1-800-265-9684

Home and Community Based Services provides South Dakota Medicaid for individuals with developmental disabilities who would otherwise be institutionalized in a Medicaid-funded hospital, nursing facility or an intermediate care facility. You can apply by phone. 

Medical Programs Available in South Dakota


Early Intervention

Birth to Three

1-800-305-3064

Birth to Three is a program that provides early intervention services, at no cost, for children from birth to age three, who have a disability or a developmental delay. 


Education 

The Navigator Program

1-800-640-4553

The Navigator Program, a partnership between the South Dakota Department of Education, Special Education Programs and South Dakota Parent Connection, provides individualized guidance to parents of children and youth with disabilities or special health care needs and school professionals at no cost. 

SD Special Education

Special Education Regional Contacts


Conservatorship

Department of Human Services 

The Department of Human Services provides assistance to adults with developmental disabilities by providing court appointed guardianship or conservatorship services or by providing financial assistance to families or others in obtaining guardianship or conservatorship of an adult with a developmental disability.


Transition to Adult Services 

Individual Education Program/ Transition Resources

Transition Services Liaison Project 

 1-800-224-5336

The state of South Dakota has three regionally based staff to provide support and technical assistance to individuals, families, LEA's, and agencies seeking information on transition planning. 


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 

South Dakota Advocacy Services

South Dakota Advocacy Services is South Dakota’s gubernatorial designated protection and advocacy (P&A) system. P&As are mandated under various federal statutes to provide legal representation and other advocacy services to all eligible persons with disabilities. These services are provided through a variety of vehicles: individual representation, educating policy makers, advocacy for groups, information and referral services, rights education, and self-advocacy training.


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.