North Carolina Resources

Family Empowerment Representatives  | Treatment and Research Centers | NC 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

Kristin Barton Stephenson, volunteer Family Empowerment Representative, Youngsville, NC  babygirl198104@yahoo.com    1-919-453-4658

Gwen Noecker,  volunteer Family Empowerment Representative, Raleigh NC   comerga@yahoo.com  1-919-426-5554


Treatment and Research Centers


Clinics & Clinical Trials

Visual Attention to Print in Children with Rett Syndrome Study

UNC1-919-966-8566        Appalachian State University  1-828-262-6074

Appalachian State University and the Center for Literacy and Disability Studies at UNC are conducting this study of visual attention to print during storybook reading by parents and their children with Rett syndrome. For UNC site information, contact the Center for Literacy and Disability Studies by email at clds@unc.edu. For Appalachian State University site information,email koppenhaverd@appstate.edu 


 State Agencies - North Carolina


Local Service Agencies

Care Coordination for Children (CC4C)

1-919-855-4050

CC4C is a program that helps families find and use community services. Children ages birth to 5 who have been diagnosed with developmental delay or disability are eligible.  

North Carolina Department of Health and Human Services

1-800-859-0829

The DHHS website provides information about resources for children with Special Needs. 

Exceptional Children's Assistance Center (ECAC)

1-800-962-6817

The ECAC supports North Carolina Family Voices. NCFV advocates for health care services that are family-centered. They believe that family-centered care is the philosophy of service delivery that best meets the needs of children and their families. 

Local Social Services Agency

Each county in North Carolina has a Local Social Services Agency. Select your county  to view phone numbers, addresses, and agency web site addresses. The North Carolina Division of Social Services works in cooperation with the Social Services Commission, the Local Social Services Agency and other public and private entities.


Handicap Placard

North Carolina Department of Motor Vehicles

The DMV issues handicap placards.  Complete the Application for Disability Parking Placard and have it signed by a physician. Submit the application and fee (currently $5.00) at your local DMV office.


State Medicaid 

Local LME/MCO

1-855-262-1946

To learn more about Medicaid services, and to apply for waivers, contact your local management facility/managed care organization (LME/MCO). 1-855-262-1946

 North Carolina Community Alternatives Program for Children (CAP/C)

CAP/C is a Medicaid waiver program for children (the Katie Beckett Waiver) under the age of 20 who are medically fragile and cared for in the home. There is no income requirement. Services offered include in home care, vehicle modifications, home modifications, access to PT, OT and ST. This program is a payer of last resort so if you have private insurance, it must be billed first. To apply, contact your Local Case Management Agency.

Innovations Waiver

1-919-855-4968

This waiver provides in home support, vehicle modifications, respite, assistive technology and other services from birth through adulthood. Your  LME/MCO can help you get Innovations services. There are a limited number of NC Innovations Waiver slots. If the slots are full, your name will be added to the Registry of Unmet Need. 

Comprehensive Waiver

1-919-715-3197

This waiver is only available in counties where the Innovations Waiver is not available. It provides vehicle modifications, in home modifications, respite, and more services for children beginning at birth, with no maximum age. There is currently a waitlist to obtain services. 

Supports Waiver

1-919-715-3197

This waiver is available in counties where the Innovations Waiver is not available. It provides home and community supports, respite, home modifications and many other services. There is currently a waitlist to obtain services. 


Early Intervention

Children's Developmental Services Agency (CDSA)

 North Carolina's Infant-Toddler Program (NC ITP)provides services for children, birth to 3, with special needs. Contact your local CDSA office.


Education

Department of Exceptional Children

The Public Schools of North Carolina Department of Exceptional Children ensures that students with disabilities develop intellectually, physically, emotionally, and vocationally through the provision of an appropriate individualized education program in the least restrictive environment.


Conservatorship

Conservatorship (Guardianship in North Carolina) is a legal proceeding in which an individual or agency (to be known as the "conservator") is appointed by a court to be responsible for a person who needs assistance in activities of daily living. This process should start approximately 6 months before the 18th birthday.

NCHHS

NCHSS provides information on guardianship.


Transition to Adult Services

Transition Process

Transition Transition describes the process from which a child moves from the school system to adulthood. In North Carolina, an initial transition component is completed at age 14 through the IEP process. Contact the Special Education department in your school district of residence for more information.

Local School Districts

A listing of local school districts in North Carolina


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)

Shining Hope Farms

1-704-827-3788

Shining Hope Farms has locations in Charlotte and Mount Holly. Their mission is to enable children and adults with disabilities to achieve functional goals through the use of hippotherapy. 

North Carolina Therapeutic Riding Center

1-919-304-1009

Located in Mebane, this is a hippotherapy center that has been helping individuals with disabilities for over 30 years.


Legal Resources


Recreation

Carowinds

Carowinds offers a Ride Boarding Pass Program for guests with disabilities that allows them to ride at specific times and avoid long lines.

Tweetsie Railroad

Tweetsie has accessible park and show venues.

Wheelchair Accessible Trails


More Parent Recommendations

North Carolina Rettsyndrome.org Facebook Page

North Carolina rettsyndrome.org Facebook page, click and ask to join

Arc of North Carolina

1-800-662-8706

The ARC is committed to securing for all people with intellectual and developmental disabilities the opportunity to choose and realize their goals of where and how they learn, live, work, and play.