Resources & Partners
COMFORT ♥ SUPPORT ♥ KNOWLEDGE ♥ EMPOWERMENT
Empowering Families and Professionals in the Fight Against Congenital Heart Disease
Navigating the journey of congenital heart disease (CHD) can be overwhelming, whether you're a parent facing the unknown or a medical professional seeking the most innovative treatments for your young patients. At Heart 2 Heart Collaborative (H2HC), we provide a bridge between families, healthcare providers, and support networks, offering resources that equip both parents and medical professionals with the knowledge and tools they need to make informed decisions and provide the best care possible.
From comprehensive educational materials to connections with leading specialists in pediatric cardiology, H2HC partners with a wide network of hospitals, research institutions, and CHD advocacy organizations to ensure every family has access to the support they need. Our collaborative approach fosters a community where shared experiences, expert guidance, and the latest research come together to give children with CHD the best chance at a healthy, thriving future.
Whether you're looking for expert advice, emotional support, or simply a sense of connection, our resources and partnerships are designed to make the journey a little easier for families and a lot more effective for medical teams. Explore our network of resources and partners today to learn how we’re helping to change the lives of children with congenital heart disease — one heart at a time.
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A program for medically-fragile children under age 21 who are at risk of long-term hospitalization or living in a nursing facility. By providing in-home nursing care, case management, and other supports, CAP/C can help children stay comfortably at home. Your child may be eligible for nurse aide care, skilled care, home and vehicle modifications, services, specialized equipment, and more. Children who are eligible for CAP/C:
Have a serious chronic medical diagnosis
May require in-home nursing care related to the medical diagnosis
Need to supplement other available supports in order to safely meet their needs
Here is additional information about CAP-C: https://medicaid.ncdhhs.gov/capc
To pursue this, reach out to the case management company in your county or discuss with your case manager, if admitted to hospital.
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NC 211: NC 211 is an information and referral service provided by United Way of North Carolina. Families and individuals can call 2-1-1 to receive free and confidential information on health and human services within their community.
AAFP Neighborhood Navigator– county specific resources:
Care Management for At-Risk Children (CMARC – Previously was referred to at CC4C): Care management for children 0-5, by local health departments. Helps with care coordination and family support. A referral form needs to be completed by healthcare provider.
Diaper Bank Resources: Select your region of NC and then search for your county for diaper resources:
WIC: Supplemental Nutrition Program for Women and Children (some families with private insurance may qualify):
WIC Tips
Infants/toddler who need a specialty formula will need a WIC prescription. Please fax and email the county when a specialty formula is ordered (information listed in the directory).
Cribs for Kids, request a crib for your infant (0-12 months):
El Futuro: Provides “bilingual and culturally-responsive mental health services including therapy, psychiatry, substance use treatment, and case management for children 6+ years as well as adults”.
El Centro NC: “Works to advance the general well-being of Hispanic/Latino/Latinx community strengthening and advancing people in North Carolina and Beyond”
Children & Families First (in home nurse visits in Greensboro)
First time mom
Less than 28 weeks pregnant
Not enrolled in any other home-visitation program
Classified as income eligible according to NC Poverty Guidelines
To speak with one of our nurses about enrolling in Nurse Family Partnership, email Mishawne Carrington or call (336) 369-5080.
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Durham County Resources
Welcome Baby Welcome baby provides parenting workshops, breastfeeding support, car seat safety, and clothing for young children. Services are available in English and Spanish.
Giving Closet: Clothing (infant, toddler, and maternity) and baby equipment.
Fridays 9-1 pm. Call 919-560-7150 to schedule appointment.
Food Bank Resources Durham, NC (lists available in English and Spanish):
Guilford County
Highpoint
YWCA Women’s Resource Center - Families can go once per month, offers cloths for babies 0-4 months, formula, wipes, diapers
Cumberland County
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Below are two different resources for patients who need cell phone assistance. If the patient has Medicaid, they can obtain a cell phone through the Medicaid case worker.
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As discussed, here is information about the Payment Plans and Financial Assistance Program at Duke. Please review this information to see if you would be eligible.
If you’d like to pursue this program, please do the following:
Step 1: In your MyChart app, go to the drop down menu for your child. Under Billing – select “Financial Assistance Application”
Complete the required information
Step 2: Complete this application and email over the form and required information.
Step 3: Please let me know once you have done step 1 and 2. We can then email the department leads regarding your application for them to process sooner. Of note, just because an application is submitted does not mean it will be accepted.
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Duke Heart Center Tour Video: tour of heart center and introduction to teams and team members
Duke Preparing for Baby Site (wonderful resources, please check this out!)
Psychological Aspects of Living with Congenital Heart Disease: Information for Patients and Families
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How to apply for Medicaid in NC: https://medicaid.ncdhhs.gov/apply
You can apply online, in person, or by calling or mailing a paper application to your local Department of Social Service (DSS) Office, typically best to call or go in-person
Review eligibility guidelines, if you are not sure if you are eligible apply anyways.
It can take up to 45 calendar days for your local DSS to decide on your application.
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Food Bank Resources Durham, NC (lists available in English and Spanish):
Lasagna Love. Have a free meal provided
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Medicaid Plans - two levels of plans
Medicaid Direct (Tailored plan) for complex needs (Trisomy 21/genetic conditions, traumatic brain injury)
Medicaid Managed Care (Standard Plans). Beneficiaries may have four or five Standard Plans to choose from based on where they live (residential county) including: AmeriHealth Caritas, Carolina Complete Health, Healthy Blue, WellCare and United Healthcare Community Plan (this option is not accepted at Duke)
WellCare
One Call
877-598-7602United Healthcare Community Plan
ModivCare
800-349-1855BCBS/Healthy Blue
ModivCare
855-397-3602AmeriHealth Caritas
ModivCare
833-498-2262Carolina Complete Health
ModivCare
855-397-3601Note: UHC Medicaid is not currently accepted by Duke
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Non-Urgent Medicaid Transportation to Medical Appointments/Procedures (you will need to be enrolled in Medicaid to arrange transportation)
MotivCare App available to request rides, you can download from Google Play or Apple App Store
ModivCare’s reservation hours are Monday - Saturday, 7:00 am - 6:00 pm, closed, Sundays and national holidays
Reservations need to be made at least 2 business days before, no more than 30 days prior
Reservations need to be made at least 4-5 business prior to a medical appointment in another county.
For procedures starting at 7:00am, can sometimes be arranged to be picked up earlier than 7:00am depending on availability of drivers.
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Many infants may be eligible for Social Security Income based on their birth weight and family income. A child will automatically qualify for SSI if their birth weight is 1200 grams (2 lbs, 10 oz.) or less, have symptomatic HIV infection, total blindness, total deafness, cerebral palsy, down syndrome, muscular dystrophy, or if a child meets the criteria for small for gestational age:
Gestational Age 37-40 weeks; Birth Weight 4lbs, 6oz or less
Gestational Age 36 weeks; Birth Weight 4lbs, 2oz or less
Gestational Age 35 weeks; Birth Weight 3lbs, 12oz or less
Gestational Age 34 weeks; Birth Weight 3lbs, 5oz or less
Gestational Age 33 weeks; Birth Weight 2lbs, 15oz or less
Other conditions that would qualify an infant for SSI are included on the Compassionate Allowances Conditions 1-278 List:
Heart Transplant Wait List - 1A/1B
Mitral Valve Atresia
Pulmonary Atresia
Single Ventricle
Tricuspid Atresia
Ventricular-assisted Device (VAD)
Infants who meet this criteria continue to be eligible for benefits under the disability category until at least age 1.
Another potential benefit for these infants is Medicaid coverage, the value of which will often exceed SSI. In NC and SC, Medicaid eligibility is automatically established with SSI eligibility
SSI is supplemental security income. It’s through Social Security and is not an insurance. But if you can get SSI, you get Medicaid as well
For more information about SSI, visit SSA.gov
How to apply for SSI- It can take up to 90 calendar days for your local DSS to decide on your application.
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Sisters By Heart(for families with a child with single ventricle heart defect):
You can request a care package from Sisters By Heart here: Request A Care Package — Sisters by Heart
Family Support Network of Central Carolina – Disability Support Resources
Heart parent group in the Triad area of NC on Instagram: hopefulheartsofthetriad
Linked By Heart connects and links heart families across the country
