Understanding Self-Directed Care in North Carolina

If you live in North Carolina and need ongoing care at home, you may have more control over how that care is delivered than you realize.

North Carolina’s Medicaid program includes a model called self-directed care, also called consumer direction, that lets eligible individuals choose who provides their support, set the schedule, and structure their care around their actual life rather than around an agency’s availability. 

It is available to children and adults across a wide range of diagnoses and circumstances and is funded through Medicaid, meaning there is no out-of-pocket cost for eligible participants.

This article explains what self-directed care is, how it works in North Carolina specifically, who the programs serve, and how to get the process started.

Self-directed care is an approach to home and community-based services that puts the person receiving care in charge.

In a traditional care model, an agency assigns a worker to come to your home. You may have little say in who that person is, when they come, or how the care is structured around your needs. 

Self-directed care works differently. You take on the role of employer. You choose who provides your support. You set the schedule, direct the work, and have real authority over how care is delivered in your home.

North Carolina has offered consumer direction as an option within its Medicaid home care programs for years. The state recognizes that care works better when the person receiving it has genuine control over it. The right caregiver is often someone who already knows you, understands your routines, communicates with you in ways that work for you, and has a real relationship with your family. Self-directed care makes it possible to put that person in a formal, paid role rather than relying on whoever happens to be available through an agency.

North Carolina’s self-directed care programs serve a broad population. You do not need a specific diagnosis to explore whether you qualify. In most cases, the person receiving care needs ongoing support to be able to stay safely at home and out of an institutional setting, and they are eligible for Medicaid.

North Carolina’s CAP programs serve:

• Children from birth through age 20 who are medically fragile or medically complex and need a high level of care to remain safely at home
• Adults 18 and older who have a physical disability, chronic medical condition, or significant health need and are at risk of nursing facility placement
• Older adults 65 and older who need support at home to avoid nursing home care

North Carolina uses an income-based eligibility standard for these programs. For CAP/C, eligibility is based on the child’s income only, not the family’s, which opens access for many families who might otherwise assume they earn too much to qualify. 

For CAP/DA, income and asset limits apply to the applicant individually. A case management agency in your county can help you understand whether you are likely to meet the criteria before you formally apply.

North Carolina offers self-directed care through two Medicaid 1915(c) Home and Community-Based Services waivers, both authorized under the Social Security Act and administered through the state’s Division of Health Benefits. They are available statewide, in all 100 counties, and are both operated in partnership with Acentra Health, the state’s long-term care support system administrator.

The Community Alternatives Program for Children, known as CAP/C, serves medically fragile and medically complex children from birth through age 20. 

It provides an alternative to institutional care, with the goal of keeping children home with their families rather than in hospitals or long-term care facilities.

Within North Carolina’s CAP/C, consumer direction allows a parent or legal guardian to act as the employer of their child’s caregiver. That means the family can hire someone they already know and trust, including qualifying family members, rather than accepting whoever an agency assigns.

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

The Community Alternatives Program for Disabled Adults, known as CAP/DA, serves adults 18 and older who are at risk of nursing facility placement due to a physical disability or chronic medical condition. It provides home and community-based services that allow people to stay in their own homes or the home of a family member.

North Carolina’s CAP/DA consumer direction option allows you to choose your own caregivers, including spouses, adult children, and other family members. A waitlist may apply depending on available slots in your county.

Both programs offer a range of services built around an individualized care plan. Services are not one-size-fits-all. What you receive is based on an assessment of your actual needs.

Services available through the CAP programs may include:

• In-home aide and personal care assistance for help with bathing, dressing, eating, and daily tasks
• Skilled nursing care for individuals with continuous or complex medical needs
• Assistive technology and specialized medical equipment
• Home accessibility modifications to improve safety and independence
• Respite care to give primary caregivers a break
• Non-medical transportation to access community resources
• Nutritional services for medically necessary supplements
• Care coordination to help manage your plan and connect you with resources
• Training and consultative services to help families and caregivers build their skills

Your case manager will work with you to identify which services apply to your situation and build a plan around them.

One of the most significant aspects of self-directed care is the freedom to hire someone you already trust.

Under consumer direction, qualifying options include:

• A family member, such as a spouse, adult child, sibling, or other relative who has the skills to provide the needed services
• A trusted friend who knows you and understands your routines and needs
• Another qualified individual of your choosing

There are some requirements. The person you hire must meet program standards for the specific services they will provide. Your case manager can walk you through what those are.

When you choose consumer direction, you become an employer in a real and legal sense. That means handling 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 keep your focus on care while the administrative responsibilities are 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 connect you with an approved provider in North Carolina.

The path into self-directed care begins with a referral. You do not need to already be enrolled in Medicaid to start 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.

Once a referral is made, a case manager will conduct an assessment to determine eligibility and identify which services apply to your situation. If approved, you will work together to build a care plan and choose your service delivery model. If you choose consumer direction, you will be connected with a Financial Management Services provider to get your caregiver enrolled and paid.

You deserve care that fits your life, delivered by people you trust, on a schedule that works for you. That is what self-directed care is designed to make possible.

Public Partnerships (PPL) is a Financial Management Services provider supporting individuals and families enrolled in North Carolina’s CAP programs. When you choose consumer direction, our team handles the payroll, taxes, and paperwork so you can stay focused on what matters. Learn more at pplfirst.com.