Family Support Network of Central Carolina
When a child is born prematurely or diagnosed with a disability, a family's world can be turned upside-down. Our mission is to provide support, education, and caring connections to families who have a child with special needs or who have experienced a NICU stay. FSNCC serves families in Guilford and surrounding counties. All of our services are confidential and offered at no cost to our families.
Ready to connect? Email us at email@example.com or call us at 336.832.6507.
Sibling Support Project
The Sibling Support Project
Founded in 1990, the Sibling Support Project is the first national program dedicated to the life-long and ever-changing concerns of millions of brothers and sisters of people with special health, developmental, and mental health concerns.
We are proud to be a program of Kindering, an award-winning organization that embraces children of diverse abilities and their families by providing the finest education and therapies to nurture hope, courage and the skills to soar.
We’ve published books for and about brothers and sisters, host online groups for teen and adult siblings, and presented workshops on sibling issues internationally and in every state.
We are best known for helping local communities start Sibshops—lively peer support groups for school-age brothers and sisters of kids with special needs.
It is an honor to serve such a deserving population. We hope you’ll explore our website and learn more about what we do.
We are grateful for the support provided by The George A. and Marion M. Wilson Foundation.
ASD Awareness Index.docx
I have Autism Spectrum Disorder (ASD). Please be aware that:
ASD affects about 1 in 59 children in the United States
ASD affects children of all racial, ethnic, and socioeconomic groups.
ASD is a spectrum disorder, which means every person with ASD has different skills, challenges, and needs.
People with ASD might be easily overwhelmed in a social or public environment due to sensitivity to sounds, sights and smells.
People with ASD often struggle with non-verbal communication, including eye contact, and may struggle to understand your social interactions.
To gain more information about Autism and ASD, check out the following resources:
Murdoch Developmental Center
Murdoch Developmental Center in Butner, NC is one of three state operated developmental centers, primarily serving 25 counties of the Central Region. Murdoch provides services and support to people with intellectual and developmental disabilities (IDD), complex behavioral challenges and or medical conditions whose clinical treatment needs cannot be supported in the community. Murdoch operates four specialty programs including children and adolescents programs which are available for individuals residing in all regions of the state.
Guidance on Medicaid and EPSDT regarding Autism Treatment
What is EPSDT?
It stands for Early and Periodic Screening, Diagnostic and Treatment (EPSDT). EPSDT is a child health program in Medicaid to help the physical, developmental and mental health needs of children under the age of 21. The idea is to find and treat illnesses and developmental conditions early, so that children have the best chance in adulthood. Children who are on Medicaid are automatically qualified for EPSDT services; they and their families do not need to sign up for a separate program.
What is covered?
EPSDT covers screening and diagnostic tests for various illness or conditions, as well as medically necessary treatment. This can include:
Comprehensive diagnostic evaluations
Behavioral assessment and the development of a treatment plan
Delivery of research-based intensive behavioral health treatment(s)*[RBI-BHT]
*There are many research-based treatments for autism. They may include interventions such as ABA (applied behavioral analysis), TEACCH (structured teaching), pivotal response training, “Floortime,” and other interventions that prevent or minimize the adverse effects of Autism Spectrum Disorder (ASD) and promote functioning of the person with ASD.
The Centers for Medicare & Medicaid Services (CMS), the federal agency that oversees state Medicaid programs, now requires states to cover behavioral services for autism for children under 21, as well as other autism interventions. North Carolina is just starting to implement access to EPSDT for autism, including evidence-based intensive behavioral treatments.
How do families access services for children under the age of 21?
1) They must be Medicaid-eligible. Families can find out whether they or their child is eligible for
Medicaid by applying online and/or through their local Department of Social Services. http://dma.ncdhhs.gov/medicaid/get-started/apply-for-medicaid-or-health-choice
Medicaid is income-dependent; however, some categories of children, such as some of those receiving SSI/SSDI, may be eligible based on their disability and not on the family income. b. Children under 21 who are eligible for or receiving an Innovations waiver, a Home &
Community-Based Medicaid waiver formerly known as CAP-MRDD or CAP-IDD, or B3 services, are eligible for EPSDT services. Prior approval must be obtained if the cost of services will exceed the Innovations waiver limit. c. Children receiving a CAP-C or CAP-DA waiver may get EPSDT services, but cost of care
may not exceed the waiver limits.
2) Official requests for autism behavioral interventions must be made by a clinician (a physician,
or licensed clinician such as a psychologist), using the “Non-Covered State Medicaid Plan Services Request Form for Recipients Under 21 years Old.” In this case, “Non-Covered” means that autism interventions are not listed in the NC State Medicaid Plan. EPSDT services, including autism behavioral interventions, are covered by Medicaid, just not listed. Requests should focus on the medical necessity of autism interventions. Requests must explain how the treatment is safe, effective, non-experimental, and medically necessary to correct or ameliorate the condition.
Requests for children under the age of 3 should be made directly to the NC Department
of Medical Assistance (DMA) in the NC Department of Health and Human Services.
Information about EPSDT for health and treatment providers can be located at https://www2.ncdhhs.gov/dma/epsdt/.
DMA can be reached by phone at 919-855-4000.
Requests for children ages 3 to 21 should be made to the local LME/MCO. You can find
information about contacting your Local Management Entity Managed Care Organization at http://www.ncdhhs.gov/providers/lme-mco-directory.
Provider and clinician requests for autism services under EPSDT will likely be processed by the LME/MCO’s Utilization Management (UM) Department. Each LME/MCO might have a different process. Please contact the LME/MCO where the recipient resides for information about processing EPSDT Non-Covered Services requests. Typically, they have information on their websites linking to the forms and process. If you have a Care Coordinator, the Care Coordinator should guide the recipient through the process.
3) Families may contact the LME/MCO directly to ask for EPSDT services through the LME/MCO’s
Access line. Locate the LME/MCO region and contact info here: http://www.ncdhhs.gov/providers/lme-mco-directory
While a clinician must make the official EPSDT request for Medicaid Non-Covered
Services (see above), families can call the LME/MCO access line to ask for services for autism under EPSDT for their child who is Medicaid-eligible.
LME/MCOs should provide information about how to access EPSDT services,
including such things as finding a clinician to do an assessment and to request services, finding a provider of autism behavioral care, and help in understanding their benefits under EPSDT. b. Families calling the LME/MCO access line should say, “I want treatment for my
son/daughter who has autism. My child is on Medicaid and they should be eligible for EPSDT services.”
LME/MCOs should help people calling to locate a RBI-BHT or a provider of other EPSDT
services. There may be limited numbers of providers in a given area. If you/the family do not already have a provider identified, you/the family may want to try contacting your local Autism Society of North Carolina Autism Resource Specialist for information about resources. Click here or call 800-442-2762 to locate a local ARS. Your potential provider
may be able to help you in accessing services with the LME/MCO; please consider contacting the provider first if you have trouble accessing services on your own.
If the LME/MCO access staff say that you are not able to get EPSDT services or that they
are not aware of EPSDT services, ask to speak with staff who has expertise with intellectual and/or developmental disabilities and/or with autism. Repeat what you are looking for with the IDD specialty staff.
If you are told you cannot get EPSDT services over the phone:
Ask the reason that the child under 21 does not qualify.
Contact one or more of the following:
The LME/MCO’s Customer Service or Complaints line (ask for their
The NC Department of Health and Human Services Customer Service
line at 800-662-7030. NC DHHS is responsible for Medicaid services in NC. Tell them that you are having problems accessing EPSDT services for your Medicaid-eligible child with autism.
Disability Rights North Carolina at 877-235-4210 or 919-856-2195. DRNC
is an independent advocacy organization that advocates and provides legal services to protect the rights of children and adults living with disabilities in NC.
If you get an official written denial of EPSDT services, it can be appealed. Follow the process outlined on the denial letter from the LME/MCO. For additional help with an appeal, you can visit the Medicaid website or call 919-865-4260.
If you have problems filing an appeal or are told you cannot file, contact Disability Rights North Carolina at 877-235-4210 or 919-856-2185.
Disability Rights North Carolina offers self-advocacy guides on its website, including guides for Medicaid and health care. The guide titled Autism Related Services in North Carolina provides additional legal information about Medicaid EPSDT and autism health-care coverage.
ASNC Provides LifeLong Interventions, a research-based intervention for autism treatment. If you are interested in having ASNC provide research-based, intensive, behavioral health treatments, such as LifeLong Interventions or ABA, please click here or contact Melissa Brown at 919-865-5077 or firstname.lastname@example.org or Whitney Luffman at email@example.com. At this time, ASNC is providing these services in the Triangle, Charlotte, Asheville and Wilmington areas. We plan to expand to other parts of the state based on need. Please let us know if you are interested in receiving services in another area.