Intellectual and Developmental Disabilities in North Carolina

Having an intellectual and developmental disability, or IDD, means navigating a world that does not always account for the full range of what you or your loved one needs. It might mean learning differently, communicating differently, or needing consistent support to manage the routines and tasks that others do without much thought. It also means having strengths, preferences, relationships, and goals that are entirely your own.

North Carolina has Medicaid programs that can help people with IDD and their families live at home, stay connected to their communities, and have genuine say in who provides support and how. This article explains what IDD means, what support can look like, and how to get started.

IDD is a combined term that describes two related but distinct conditions that frequently occur together.

A developmental disability is a severe, chronic condition caused by a mental or physical impairment, or both. It appears before age 22, is expected to continue indefinitely, and results in significant limitations in areas like self-care, learning, communication, mobility, and independent living.

An intellectual disability is a specific type of developmental disability. It involves significant limitations in both:

According to the American Association on Intellectual and Developmental Disabilities, intellectual functioning refers to general mental capacity, including:

• Learning
• Reasoning 
• Problem-solving

Adaptive behavior refers to the practical, social, and conceptual skills people use in everyday life. 

Both must be significantly limited, and both must have originated before age 22, for a diagnosis of intellectual disability to apply.

Intellectual disability is not one fixed experience. It exists on a wide spectrum. Some people live largely independently with modest support. Others need more intensive, ongoing assistance. 

Most individuals land somewhere in the middle.

Common conditions include:

• Down syndrome
• Fragile X syndrome
• Autism Spectrum Disorder (ASD), when accompanied by intellectual disability
• Fetal Alcohol Spectrum Disorder
• and certain genetic or chromosomal conditions

In North Carolina, a traumatic brain injury diagnosed before age 22 may also qualify for IDD services under state statute G.S. 122C-3.

For many people with IDD and their families, the biggest challenges are not the disability itself. They are the gaps in support.

That might look like:

• A young adult who is ready to be more independent but needs consistent help managing money, keeping appointments, or navigating public transportation
• A family trying to ensure their child has safe, reliable care from someone who truly knows them
• An adult who has lived in an institutional setting and wants to move back into the community but needs the right supports in place to make that possible

What most people with IDD have in common is a need for support that is:

• Consistent
• Personalized
• Delivered by people they trust

That is exactly what the programs available in North Carolina are designed to provide.

The NC Department of Health and Human Services oversees services for individuals with intellectual and developmental disabilities. 

For people whose IDD also involves significant physical or medical care needs, two Medicaid programs administered through the CAP system provide home and community-based support: CAP/C for children and CAP/DA for adults.

The Community Alternatives Program for Children, known as CAP/C, is a 1915(c) Medicaid Home and Community-Based Services waiver for medically fragile and medically complex children from birth through age 20. 

Children with IDD whose disability also involves significant physical or medical care needs may qualify. 

Note: Medicaid eligibility is based on the child’s income only, not the family’s. 

• Have a primary chronic medical condition that is physical in nature
• Meet the criteria for institutional level of care under the North Carolina Medicaid State Plan
• Have a reasonable need for at least one CAP/C waiver service

To learn more about CAP/C and multisystem needs, click here. 

The Community Alternatives Program for Disabled Adults, known as CAP/DA, is a 1915(c) Medicaid HCBS waiver for adults 18 and older who are medically fragile or complex and at risk of nursing facility placement. Adults with IDD that involves significant physical care needs may qualify.

• Be 18 or older
• Be medically fragile or medically complex
• Be at risk of nursing facility placement

North Carolina also has the NC Innovations Waiver, a Medicaid program specifically designed for individuals with intellectual and developmental disabilities of all ages. It is administered through Local Management Entities and Managed Care Organizations, known as LME/MCOs, rather than the CAP programs. It has a significant waiting list. If you or your loved one may be eligible, contacting your local LME/MCO to apply as early as possible is the first step.

With North Carolina consumer direction (also referred to as self-direction), you (or your legally responsible person) take on the role of employer for your caregiver.

That means:

• You choose who provides support
• You set the schedule
• You supervise the work

For people with IDD, support typically works best when it comes from someone who genuinely knows the person, understands their communication style, respects their preferences, and has built the kind of trust that cannot be replicated by a rotating roster of unfamiliar workers. 

Consumer direction makes it possible to put that person in the role formally and compensate them fairly for what they do.

The person you hire does not have to come from an agency. Under consumer direction, qualifying options include:

• A family member, such as a sibling, parent in some cases, aunt, uncle, or other relative with the skills to provide the services needed
• A trusted friend who knows the person well and understands their routines and needs
• Another qualified individual of your choosing, including someone you may not have an existing relationship with

The rules vary by service type and program. Your case manager can walk you through what applies to your specific situation.

When you choose consumer direction, you take on real employer responsibilities. That means processing payroll, withholding and remitting employment taxes, and managing the paperwork that comes with having a paid employee.

A Financial Management Services provider, often called an FMS provider, handles all of that on your behalf. With an FMS provider in place, you stay focused on the person receiving care while the administrative side is managed for you.

An FMS provider will:

• Process payroll for your caregiver using your authorized program budget
• Handle all federal, state, local, and unemployment taxes
• Support you and your caregiver through enrollment
• Provide budget management tools so you always know where you stand
• Offer customer service when questions come up

Working with an FMS provider is a required part of participating in consumer direction. Your case manager can help connect you with an approved provider in North Carolina.

If your child has an intellectual or developmental disability and significant physical or medical care needs: Contact a CAP/C case management agency in your county, or call Acentra Health at 833-522-5429. CAP/C is available in all 100 North Carolina counties and currently has no waiting list.

If you are an adult with an intellectual or developmental disability and significant physical care needs: Contact a CAP/DA case management agency in your county, or call Acentra Health at 833-522-5429 to request a referral.

Everyone deserves support that fits their life, delivered by people they trust. That is what consumer direction is designed to make possible. And when you are ready to take that step, you will not be managing the employer side of it alone.

PPL (Public Partnerships) is a Financial Management Services provider supporting families enrolled in North Carolina’s CAP programs. When you choose to direct your child’s care, our team handles the payroll, taxes, and paperwork so you can stay focused on your child. We are here when you are ready. Learn more about PPL’s role in North Carolina’s CAP programs at pplfirst.com.