On May 7, 2026, disability advocates testified before North Carolina state lawmakers. The subject wasn't new, just urgent: nearly 21,000 North Carolinians are on the Innovations Waiver waitlist, with some families facing a near-two-decade wait for services that allow a child or adult with intellectual or developmental disabilities to live at home rather than in an institution. Meanwhile, 14,000 people currently receive waiver services. The gap between who's served and who's waiting has widened each year, even as the state added 350 new slots in 2024.

Governor Stein's budget proposes $26 million for 200 new Innovations Waiver slots and $25 million for Transitions to Community Living, a related program that helps people move out of institutions. The NC House and Senate haven't released their budget proposals yet, which means the legislative window is open for public input. This article covers what the Innovations Waiver is and who qualifies, the current waitlist reality, what compounding costs families bear while waiting, what Governor Stein proposed versus what the legislature has offered so far, how families can contact their NC legislators before the budget is finalized, what bridge and interim supports are available on the waitlist, and what families should document now to strengthen their position for when a slot opens.

What the Innovations Waiver Is and Who Qualifies

The Innovations Waiver is North Carolina's Medicaid Home and Community-Based Services (HCBS) waiver for people with intellectual or developmental disabilities, autism, severe traumatic brain injury, or other qualifying conditions. It pays for personal care assistance, respite care, day supports, residential supports, and other services that allow someone to live in their community rather than in a nursing facility or institution.

To qualify, you must meet three criteria: be eligible for North Carolina Medicaid, have a qualifying diagnosis (intellectual disability, developmental disability, autism spectrum disorder, or traumatic brain injury with functional limitations), and require the level of care provided in an intermediate care facility for individuals with intellectual disabilities (ICF/IID). That third criterion is the threshold: you must need institutional-level care to qualify for the waiver that prevents institutionalization.

Children and adults both qualify. There's no age minimum for joining the waitlist, and families are advised to apply as early as possible because wait times are measured in years, not months.

The Current Waitlist Reality

As of May 2026, approximately 21,000 people are on the Innovations Waiver waitlist. Another 14,000 people currently receive waiver services. That ratio tells the story: for every three people waiting, only two are served.

Wait times vary by region and by individual need, but families report waits of seven to fifteen years in some counties. A few families testified that they'd been waiting since their child was a toddler, and that child is now approaching adulthood without ever receiving waiver services. The state added 350 new slots in 2024, which sounds meaningful until you divide it by 21,000. At that rate, it would take sixty years to clear the current waitlist, assuming no one else joined.

Why have slots grown so slowly? Medicaid waivers are jointly funded by state and federal dollars, and North Carolina's state budget for disability services has not kept pace with demand. The federal government matches state HCBS spending at an enhanced rate (currently 56% federal, 44% state for North Carolina's standard Medicaid match, with HCBS potentially eligible for a higher match under certain conditions), but the state must allocate its share first. Every year the waitlist grows, the gap between available funding and actual need widens.

What Compounding Costs Families Bear While Waiting

Families on the waitlist don't wait passively. They absorb the work the waiver would otherwise pay for, and that work compounds.

Parents leave the workforce or reduce hours to provide care that personal care assistants would deliver if a waiver slot existed. Lost income isn't a one-time hit; it's cumulative over years, reducing lifetime earnings, retirement savings, and career advancement. A parent who steps back from full-time work in 2020 to care for a child on the waitlist doesn't recoup those years when a slot finally opens in 2028 or 2032.

Respite care, which the waiver funds, prevents caregiver burnout. Without it, families piece together informal support from relatives and neighbors, or they don't get breaks at all. The physical and mental health toll of years without respite shows up as chronic stress, untreated health conditions, and family strain.

Day supports and community engagement services that the waiver would fund are replaced by nothing, or by parents arranging activities piecemeal at their own expense. A young adult with a developmental disability who qualifies for the waiver but hasn't received it spends years at home without structured programming, without peer interaction, without building skills that matter for independence. That gap doesn't close when the waiver slot arrives; those years are gone.

The compounding cost is this: families become the structural support for a system that doesn't have capacity to serve them. They absorb the labor, the financial loss, and the health consequences so the state doesn't have to fund the services. That unpaid care has been quantified nationally at over $1 trillion annually. In North Carolina, 21,000 families are carrying that load while they wait.

What Governor Stein Proposed vs. What the Legislature Has Offered

Governor Stein's budget, released in March 2026, includes $26 million to fund 200 new Innovations Waiver slots and $25 million for the Transitions to Community Living program, which helps people move out of institutions and nursing facilities into community-based settings. The 200 new slots would represent a modest increase over the 350 slots added in 2024, but still a fraction of the 21,000-person waitlist.

The NC House and Senate have not yet released their budget proposals as of early May 2026. That timing is critical: the legislative budget process typically involves the House passing a budget, then the Senate passing its own version, followed by negotiations in a conference committee to reconcile differences. Families have the most influence during the period before each chamber votes on its initial proposal, which is happening now.

In past years, the NC General Assembly has added waiver slots but at levels below what advocates requested. For context, the 350 slots funded in 2024 followed years of smaller increases (100-150 slots per year in prior cycles). Advocates are pushing for at least 500 new slots in the 2026-2027 budget, arguing that anything less continues to widen the gap between need and capacity.

How Families Can Contact NC Legislators Before the Budget Is Finalized

The most effective time to contact legislators is before they vote on the budget, not after. Here's how to do it.

Find your legislators. Go to ncleg.gov and use the "Who Represents Me?" tool. Enter your address to find your NC House representative and NC Senate member. You need both names and contact information.

Call or email their legislative offices. Phone calls carry more weight than emails because they require staff time to log, but both matter. Legislative offices tally constituent contacts by issue, and those tallies inform how representatives vote.

Use this script or adapt it:

"My name is [Your Name], and I live in [City/County]. I'm calling to ask Representative/Senator [Name] to support at least 500 new Innovations Waiver slots in the 2026-2027 state budget. My family has been on the waitlist for [X years], and we're currently providing full-time care without the supports the waiver would fund. The current proposal of 200 slots isn't enough to address the 21,000-person waitlist. I'm asking you to increase that number and prioritize funding for home and community-based services."

Be specific about your situation if you're comfortable. Personal stories influence votes. If your family has been waiting for eight years, say so. If you've had to leave your job to provide care, say that. If your child or adult family member isn't receiving day supports or respite care they need, name it.

Contact the budget committee leadership directly. The NC House Appropriations Committee and the NC Senate Appropriations Committee control budget details. Their chairs and vice chairs have outsized influence on what gets funded. Look up current committee leadership on ncleg.gov and prioritize contacting them in addition to your own district representatives.

Do it now. The window for public input narrows once each chamber passes its initial budget. Contact legislators in early May 2026 while the budget is still being drafted.

What Bridge and Interim Supports Are Available on the Waitlist

Being on the Innovations Waiver waitlist doesn't mean you're locked out of all Medicaid-funded disability services. North Carolina offers interim programs that provide limited supports while families wait.

Community Alternatives Program for Children (CAP/C) serves children from birth through age 17 who have significant functional limitations and are at risk of institutionalization. CAP/C isn't as comprehensive as the Innovations Waiver, but it funds personal care, respite, and other in-home supports. Eligibility criteria are similar to the Innovations Waiver: the child must be Medicaid-eligible and require institutional-level care. If your child is on the Innovations Waiver waitlist and under 18, apply for CAP/C. It's a separate program with its own funding stream, and receiving CAP/C services doesn't affect your position on the Innovations Waiver waitlist.

Community Alternatives Program for Disabled Adults (CAP/DA) serves adults age 18 and older who are at risk of nursing facility placement. Like CAP/C, it's not as comprehensive as the Innovations Waiver, but it provides personal care, adult day health, and respite services. Apply if you're an adult on the Innovations Waiver waitlist or if you're caring for an adult family member who qualifies.

Personal Care Services (PCS) through regular Medicaid may be available if the individual qualifies based on functional limitations, even without a waiver. PCS provides hands-on assistance with activities of daily living (bathing, dressing, eating, toileting, mobility). It doesn't include the broader supports the Innovations Waiver funds, like day programs or residential supports, but it can ease some of the direct care burden families carry. Contact your local Medicaid office or managed care plan to ask about PCS eligibility.

NC Innovations Waiver Slot Reservation for Crisis. North Carolina reserves a small number of Innovations Waiver slots for crisis situations, defined as imminent risk of institutionalization, homelessness, abuse, or neglect. If your family is in crisis, contact your local Management Entity/Managed Care Organization (MCO) and request a crisis slot review. These slots are limited and require documentation of the crisis, but they exist outside the standard waitlist process.

None of these interim supports replace the Innovations Waiver, but they can reduce the compounding costs families bear while waiting. Apply for every program you qualify for. There's no penalty for accessing interim services while on the waitlist.

What Families Should Document Now to Strengthen Their Position for When a Slot Opens

When your name reaches the top of the Innovations Waiver waitlist, you'll need to prove that you still meet eligibility criteria and that your need for services is current. Families who have documented their care needs over the years move through the enrollment process faster than those who have to reconstruct years of medical and functional history on the spot.

Keep a care log. Start now if you haven't already. Track the hours you spend providing personal care, supervision, and support each week. Note what tasks you're doing (bathing, feeding, medication management, behavioral support, transportation to appointments) and roughly how much time each takes. This log becomes evidence of the institutional-level care you're providing at home.

Collect medical records annually. Request updated records from your primary care provider, specialists, and therapists at least once a year. Store them in a binder or digital folder organized by date. When the waiver slot opens, you'll need recent documentation of diagnoses, functional limitations, and treatment history. "Recent" means within the past 12 months for most purposes.

Document denials and gaps in care. If you've requested services through insurance, schools, or other programs and been denied, keep those denial letters. If your child or adult family member needs therapy, day programming, or respite care that you can't access because of cost or availability, document what's missing and when you tried to access it. These records show unmet need, which supports the case for waiver services.

Track changes in condition or care needs. If functional abilities decline, behavior support needs increase, or medical complexity grows while you're on the waitlist, document it. Updated physician notes, therapy evaluations, or school assessments that reflect increased support needs strengthen your case when the slot opens.

Stay in contact with your Local Management Entity (LME) or Managed Care Organization (MCO). North Carolina contracts with regional LMEs and MCOs to manage Innovations Waiver enrollment. Contact your assigned entity annually to confirm your contact information is current and to ask about your position on the waitlist. If you move, update your address immediately so you don't miss the notification when a slot becomes available.

Families who arrive at the enrollment meeting with organized records, a documented care log, and current evaluations move through the process in weeks. Families who don't have this documentation can wait months just to gather it after a slot opens, and in some cases, delays lead to losing the slot to the next person on the list.

What Happens Next

The NC legislative budget process runs through late May and early June 2026. Contact your legislators now, while they're drafting proposals. If the final budget includes fewer than 500 new Innovations Waiver slots, advocacy groups will likely push for mid-year adjustments or increased funding in the following biennium. Stay connected to organizations like The Arc of North Carolina, Disability Rights North Carolina, and the NC Council on Developmental Disabilities for updates on legislative action and additional ways to advocate.

In the meantime, apply for interim supports (CAP/C, CAP/DA, PCS), document your care needs, and keep your contact information current with your LME or MCO. The waitlist is real, the timeline is measured in years, and the budget process doesn't move fast enough to serve everyone who qualifies. But families who know what to ask for, who to contact, and how to position themselves for when a slot opens have more power than those who wait passively.