CAP-C contact at the Division of Medical Assistance, which oversees the program from the state level: Melinda Dudley, Admin Assistant, 919-855-4376. She can refer callers to their county agencies that take referrals for CAP-C. Additionally, Melinda can direct you to the DMA Nurse Consultant who oversees your child’s case if you have questions or issues that the case manager has not been able to resolve. http://dma.ncdhhs.gov/providers/programs-services/long-term-care/community-alternatives-program-for-children
NC Innovations Waiver
The Medicaid Innovations Waiver help Individuals with Intellectual or Developmental Disabilities (I/DD) live a more independent lifestyle. The local management entity/managed care organization (LME/MCO) receives a set amount of money (capitation) each year that is used to help people get I/DD services. https://www2.ncdhhs.gov/ncinnovations/
ECAC – Exceptional Children’s Assistance Center. Helpful contacts for questions about school, IDEA, IEP, 504. Also a good parent resource for children’s health information. http://www.ecac-parentcenter.org/
Children’s Health Insurance Program (CHIP) 1-877-543-7669, https://www.insurekidsnow.gov/coverage/nc/index.html The Children’s Health Insurance Program (CHIP) is a state and federal partnership that provides low-cost health insurance coverage for children in families who earn too much income to qualify for Medicaid but cannot afford to purchase private health insurance.
First in Families of North Carolina – http://www.fifnc.org/
Provides financial assistance to families of those with a disability and family income under $65,000 a year. Assistance comes in the form of linking to community resources; summer camp scholarships (when available); food, clothing, shelter; medical equipment and supplies… the list is really as varied as the family/child needs. Each regional FIF chapter may have varied amounts of funds available depending on their fundraising capacity but annual cash assistance is typically limited to $500 per family per year.
Social Security Administration – https://www.ssa.gov/pubs/EN-05-10026.pdf
Children and Social Security. A resource booklet for parents, caregivers, or representatives of children younger than age 18 who have disabilities that might make them eligible for Supplemental Security Income (SSI) payments. It is also for adults who became disabled in childhood and who might be entitled to Social Security Disability Insurance (SSDI) benefits. (This SSDI benefit might be considered a “child’s” benefit because it is paid on a parent’s Social Security earnings record.)
UnitedHealthcare Children’s Foundation – https://www.uhccf.org/
UHCCF’s mission is to provide medical grants that significantly enhance the clinical condition or quality of life of children across the United States who are covered under a commercial health insurance plan and are 16 years old or younger.
Partnership for Prescription Assistance, https://www.pparx.org/. This is FREE service.
Our mission is to increase awareness of patient assistance programs and boost enrollment of eligible individuals. We offer a single point of access to more than 475 public and private programs, including about 200 programs offered by biopharmaceutical companies. We’ve helped millions of Americans to get prescription drugs for free or at very low cost drugs.
NC Rare Disease Network, http://www.med.unc.edu/ncrarediseasenetwork
The mission of the North Carolina Rare Disease Network is to improve the lives of millions of people with one of the 7000 devastating rare diseases by creating a unique collaborative partnership between patients, providers, scientists, agencies and industry.
NC Rare Disease Coalition, https://www.facebook.com/ncrarediseasecoalition/
The N.C. Rare Disease Coalition is composed of organizations and individuals who advocate for advances in the development of treatments for rare diseases.
Family Support Network of North Carolina – http://fsnnc.org
Affiliate groups throughout the state provide parent-to-parent matching services and a central directory of resources for parents. Some affiliates sponsor local events such as “Cookies with Santa” or “Spring Fling” outings. Not all counties currently have an FSN affiliate.
North Carolina Coalition to Protect Child and Family Health – Hosted by NC Child, this group advocates to protect and expand insurance options (Medicaid and Health Choice and Affordable Care Act benefits) for children and adults in North Carolina.
Children’s Flight of Hope – https://www.childrensflightofhope.org/
For children with serious illnesses or injuries, treatment may be available but sometimes it’s located too far away for them to access. Children’s Flight of Hope (CFOH) is changing that by providing air transportation for children to access specialized medical care.
The National Patient Travel Center – www.patienttravel.org – 1.800.296.1217
The National Patient Travel Center provides information about all forms of charitable, long-distance medical transportation and provides referrals to all appropriate sources of help available in the national charitable medical transportation network.
Air Care Alliance – www.aircarealliance.org
If you are seeking free air transportation or aviation services you can send an inquiry to each appropriate organization in one easy step by providing Air Care Alliance the necessary information about your transportation needs.
Medical Support Housing
Ronald McDonald House Charities – www.rmhc.org
Ronald McDonald Houses are a “home-away-from-home” to keep parents and children together. Many families travel far from home and spend several weeks or months to get treatment for their seriously ill or injured children – a long time to be away or to divide a family. And, for children facing a serious medical crisis, nothing seems scarier than not having mom and dad close-by for love and support. A Ronald McDonald House is that home-away-from-home for families so they can stay close by their hospitalized child at little or no cost.
Special Needs Resources
Special Needs Resources for NC Families — www.carolinaparent.com/CP/Special-Needs-Resources/ – Includes ADD and ADHD, Adaptive Equipment and Technology, Autism Spectrum and Related Disorders, Blind and Vision-Impaired, Chronic Health Conditions, Deaf and Hard of Hearing, Developmental Delays and Disabilities, Learning Disabilities, Neurological and Neuromuscular Resources, Physical Therapy
Assistive Technology Funding Resources | NC Department of Health and Human Services – Includes information on assistive technology funding options for individuals and an overview of the funding process. A link to our online funding webinar is also included. https://www.ncdhhs.gov/divisions/vocational-rehabilitation-services/north-carolina-assistive-technology-program/assistive
The North Carolina Assistive Technology Program | NC Department of Health and Human Services – Describes the Assistive Technology Program, which provides assistive technology services statewide to people of all ages and abilities. https://www.ncdhhs.gov/divisions/vocational-rehabilitation-services/north-carolina-assistive-technology-program
Application for Disability Parking Placard ( MVR-37A ) – NCDOT – https://www.ncdot.gov/download/dmv/VR_MVR37A.pdf
A licensed medical provider certifies that the applicant is a person with an affliction, disability or handicap defined under G.S. 20-37.5. The Disability Parking Placard is issued for five years and requires a medical provider’s re- certification upon re-issuance to continue parking in disability accessible areas
Summer Camps in North Carolina For Individuals With Special Needs
Make-A-Wish® Eastern North Carolina
Make-A-Wish® Central & Western North Carolina
Resources for Patients and Advocates in NC
Pleural Mesothelioma Cancer – https://www.pleuralmesothelioma.com/cancer/
Mesothelioma.com – https://www.mesothelioma.com
Mesothelioma and Asbestos Awareness (MAA) Center – https://www.mesotheliomadiagnosis.com
Research and Advocacy
Genetic Alliance is devoted to promoting optimum health care for people suffering from genetic disorders.
RareConnect promotes global conversation and collaboration to improve the lives of rare disease patients and assist the organizations that serve them.
Global Genes serves to build awareness, educate the global community, and provide critical connections and resources that equip advocates to become activists for their disease.
The EveryLife Foundation for Rare Diseases is dedicated to accelerating biotech innovation for rare disease treatments through science-driven public policy.
National Organization for Rare Disorders (NORD)
NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 250 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
National Institutes of Health
NIH’s mission is to seek fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lengthen life, and reduce illness and disability.
NIH is made up of 27 Institutes and Centers, each with a specific research agenda, often focusing on particular diseases or body systems. Of particular interest to the rare disease community:
Office of Rare Disease Research (ORDR)/National Institutes of Health (NIH)
The Office of Rare Diseases Research (ORDR) was established in 1993 within the Office of the Director of the National Institutes of Health (NIH), the Federal focal point for health research. ORDR coordinates and supports rare diseases research, responds to research opportunities for rare diseases, and provides information on rare diseases.
Genetic and Rare Diseases Information Center (GARD)/NIH
A collaborative effort of ORDR and the National Human Genome Research Institute (NHGRI), the Genetic and Rare Diseases Information Center (GARD) is a program of the National Center for Advancing Translational Sciences (NCATS) at the NIH. GARD provides the public with access to current, reliable, and easy-to-understand information about rare or genetic diseases in English or Spanish.
National Human Genome Research Institute (NHGRI)/NIH
NHGRI supports the development of resources and technology that will accelerate genome research and its application to human health. A critical part of the NHGRI mission continues to be the study of the ethical, legal and social implications (ELSI) of genome research. NHGRI also supports the training of investigators and the dissemination of genome information to the public and to health professionals.
Organizations for Undiagnosed or Unnamed Syndromes
Syndromes Without A Name USA (SWAN USA)
SWAN USA advocates for children and young adults who have syndromes without a name. They also offer support, advice and information on the challenges that families face when there is no diagnosis.
Rare & Undiagnosed Network (RUN)
Raise awareness for families with children afflicted with undiagnosed or rare diagnosed conditions. Urge insurance companies to reimburse genome sequencing in clinical settings. Network with researchers, insurance providers, and industry stakeholders to meet these families’ needs.
Undiagnosed Diseases Network (UDN)
The Undiagnosed Diseases Network, funded through NIH Common Fund, is designed to accelerate discovery and innovation in the way we diagnose and treat patients with previously undiagnosed diseases.
In Need of Diagnosis (INOD)
Serves as a resource center for those who suffer with illnesses that have eluded diagnosis. INOD does not diagnose but it is sometimes possible to identify unexplored options that may lead to help. INOD advocates for increased accuracy and timeliness in diagnosis and for the development of a medical specialty in diagnosis.
Caregivers – Support and Advocacy
The Caregiver Action Network (CAN)
The mission of the Caregiver Action Network (CAN) is to promote resourcefulness and respect for the more than 90 million family caregivers across the country. The site includes specific guides for family caregivers of loved ones with rare diseases and links to rare disease patient organizations.
Family Voices aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities.
Through a national grassroots network, Family Voices provide families resources and support to make informed decisions, advocate for improved public and private policies, build partnerships among families and professionals, and serve as a trusted resource on health care.
Exceptional Children’s Assistance Center (ECAC) is the Family Voices State Affiliate Organization and the Family-to-Family Health Information Center in North Carolina.
Family Support Network of North Carolina
The Family Support Network of North Carolina, a program of the University of North Carolina at Chapel Hill School of Medicine, is dedicated to providing information, assistance, support, and resources to families of children with special needs and professionals who serve these families. The Family Support Network’s mission is threefold: to provide current information about disabilities, services, and agencies that serve affected families and professionals; to coordinate a network of community-based parent-to-parent programs to offer support and assistance to other parents, professionals, and agencies; and to encourage parent-professional collaboration between physicians and other health care professionals and affected families.
Patient Assistance Programs
Patient Access Network Foundation (PAN)
The Patient Access Network Foundation is dedicated to providing underinsured patients with financial assistance through more than 50 disease-specific funds that provide access to progressive therapies.