Developmental Disability Support Options in North Carolina

If you or someone you love has a developmental disability, you already know that daily life can look a lot of different ways. Some days the challenges are physical. 

Some days they are about navigating systems that were not designed with you in mind. And some days the biggest challenge is simply figuring out what support is available and how to get it.

North Carolina has programs specifically designed to help people with developmental disabilities live at home, stay connected to their communities, and have real say in how their care is delivered. 

This article explains what a developmental disability is according to North Carolina, how it differs from an intellectual disability, and what support can look like across a lifetime.

According to the NC Department of Health and Human Services, a developmental disability is a chronic condition caused by a mental, physical, or combined impairment that is diagnosed or becomes apparent before age 22 and is expected to continue indefinitely.

To qualify as a developmental disability under North Carolina’s definition, the condition must result in significant limitations in three or more of the following areas:

• Self-care
• Receptive and expressive language
• Learning
• Mobility
• Self-direction
• Capacity for independent living
• Economic self-sufficiency

These limitations create a need for ongoing, individualized support that is planned and coordinated over time. That is the heart of what makes a developmental disability different from a short-term condition or a temporary challenge.

For infants and young children from birth through age 4, North Carolina’s definition allows some flexibility. A child does not need to meet the full three-or-more criteria if they have a substantial developmental delay or a specific congenital condition and there is a high probability they will meet those criteria as they grow. This means families do not have to wait for a full picture to emerge before seeking support.

One of the most important things to understand about developmental disabilities is how broad the definition really is.

A developmental disability does not require an intellectual impairment. Many people with developmental disabilities have typical or above-average cognitive ability. Their disability may be primarily physical, affecting how they move, breathe, manage daily bodily functions, or maintain their health, while their capacity to think, learn, and communicate is entirely unaffected.

This is where developmental disability and intellectual disability differ in a meaningful way.

Developmental disability is a broad category. It covers a wide range of conditions, and not all of them affect how a person thinks or learns. Some people have a developmental disability that is primarily physical, affecting how they move, breathe, or manage their health, while their ability to reason, communicate, and learn is completely unaffected.

Intellectual and developmental disability, or IDD, is a specific type of developmental disability. It involves significant limitations in both intellectual functioning, things like reasoning, learning, and problem solving, and adaptive behavior, the practical and social skills people use in everyday life. 

IDD is one type of developmental disability, but not all developmental disabilities are IDD. The difference matters because it affects which programs and services apply to your situation.

Developmental disabilities take many forms. Some are present from birth. Others become apparent gradually over the early years of life.

Common conditions include:

• Cerebral palsy
• Epilepsy
• Fetal Alcohol Spectrum Disorder
• Certain congenital conditions affecting physical development

Conditions like Down syndrome and Autism Spectrum Disorder also fall under the developmental disability umbrella, though they often involve intellectual disability as well, which is why the combined term IDD, or intellectual and developmental disability, is frequently used.

North Carolina also recognizes traumatic brain injury as a qualifying condition. If you were diagnosed with a traumatic brain injury before age 22, you may be eligible for developmental disability services under G.S. 122C-3.

The NC Department of Health and Human Services oversees services and supports for individuals with developmental disabilities in North Carolina. For people whose disability involves significant physical or medical care needs, two Medicaid programs provide home and community-based support: CAP/C for children and CAP/DA for adults.

To learn more about how these programs work, check out our post about self-directed care in North Carolina.

The Community Alternatives Program for Children, known as CAP/C, serves medically fragile and medically complex children from birth through age 20. Children with developmental disabilities that also involve significant multisystem needs may qualify.

Medicaid eligibility for CAP/C is based on the child’s income only, not the family’s. There is currently no waiting list.

The Community Alternatives Program for Disabled Adults, known as CAP/DA, serves adults 18 and older who are medically fragile or complex and at risk of nursing facility placement. Adults with developmental disabilities that result in significant physical care needs may qualify.

CAP/DA is not an entitlement program. A waitlist may apply depending on slot availability.

If your developmental disability also involves intellectual disability, you may also be eligible for 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. The Innovations Waiver has a significant waitlist, so it is worth contacting your local LME/MCO to apply as early as possible.

Within CAP/C and CAP/DA, eligible individuals and families have the option to direct their own care, choosing who provides support, setting the schedule, and structuring care around their actual life. This is called consumer direction, and it is especially meaningful for people with developmental disabilities who rely on physical support from someone who truly knows them.

When you choose consumer direction, a Financial Management Services provider handles the payroll, taxes, and paperwork on your behalf so you can stay focused on what matters.

You do not need to already be enrolled in Medicaid to begin the process.

If you are looking for support for a child: Contact a CAP/C case management agency in your county, or call Acentra Health at 833-522-5429. You can also fax a completed referral form to 833-470-0597. CAP/C is available in all 100 North Carolina counties.

If you are an adult or are looking for support for an adult: Contact a CAP/DA case management agency in your county, or call Acentra Health at 833-522-5429 to request a referral.

Public Partnerships (PPL) 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.