More than 600,000 people are currently on Medicaid HCBS waiver waitlists across 41 states.
In Texas, some people wait 17–18 years for home care services.
In North Carolina, families who applied today might not receive services for 20 years.
In Colorado, a 2026 budget cut is projected to double a seven-year wait to fourteen.
Washington D.C. just activated its first-ever IDD waiver waitlist after decades of having none.
This is a live, escalating crisis and the dominant narrative about it (it's a funding problem, policy needs to fix it) is only half right. The other half, the part that agencies can actually act on, is operational: the agencies serving people right now are often running at 70–80% of their real capacity because of scheduling inefficiencies, slow onboarding, and billing overhead that has nothing to do with state caps.
In this guide I am going to cover both halves, because understanding what's broken is the first step toward fixing what you actually can.
Here's What's Actually Broken.Here's a number that should stop you cold: more than 600,000 Americans are currently on Medicaid HCBS waiver waitlists. Not waiting for a specific caregiver. Not waiting for paperwork. Waiting to get into a program that will let them receive home care services at all, some of them for years, some for decades!
In Texas, the wait for HCS (Home and Community-based Services) runs 17 to 18 years. In North Carolina, families who put a child on the Innovations Waiver waiting list today may not receive services for 20 years. In Kentucky, an analysis once showed it would take 168 years to clear the Michelle P. Waiver backlog at the rate slots were being released.
And it's getting worse, not better.
In 2025, 29 states reported an increase in the number of people on waiting lists or interest lists compared with only 12 states reporting a decrease.
I’ve spent much of my career working with organizations that help older adults and people with disabilities live in the homes and communities of their choice. Over those years, I’ve learned that the people doing this work are extraordinarily committed, but they are often asked to operate within systems that make their jobs much harder than they need to be.
I’m not a policymaker, and this isn’t intended to be a political argument. States and the federal government will continue to debate how much funding should be available and how it should be distributed. What concerns me is what happens to the people and families who are waiting while those debates continue.
At Ankota, we focus on the part of the problem we can help change. Software cannot create additional waiver slots or solve the caregiver shortage. But it can reduce the time lost to scheduling problems, EVV corrections, slow onboarding, billing errors, and unnecessary administrative work. When care resources are this scarce, we have an obligation to make sure as little of that capacity as possible is wasted. Ken Accardi - Ankota CEO
The most shocking fact is that Washington D.C., after decades with no waitlist at all, activated its first-ever IDD waiver waitlist on October 1, 2025, following a $1.6 million funding cut. And in Colorado, a March 2026 budget committee decision is projected to roughly double the state's already seven-year wait toward 14 years for developmental disability services. And this is insane, but here's how we can help.
Let's be direct about the structural reality, because you can't have an honest conversation about agency-level solutions without first acknowledging the ceiling that states have built into the system.
This is the single fact that most families discover late and with shock. Traditional Medicaid is an entitlement, if you qualify, you get services. HCBS is optional for states to provide and is frequently offered through "waivers," which allow states to cover a wide range of benefits and to choose (and limit) the number of people who receive services.
States literally build into their annual budgets how many people they will not serve. Waiver slots are a finite resource, like parking spaces and obviously demand has far outpaced the number of spaces for decades.
The KFF's 2025 survey, the most comprehensive national dataset on HCBS waitlists, estimates that 5.1 million Medicaid enrollees use home care and waitlists have barely moved in a decade. There have been at least 500,000 people on waitlists every single year since 2016. That number is not the result of a bad year or a temporary crisis. It is the intended steady state of a system designed to serve fewer people than need it.
Average wait times in 2025 were 37 months for intellectual or developmental disability waivers, 15 months for older adults and people with physical disabilities, and 63 months, OVER FIVE FREAKING YEARS, for autism waivers. These are averages. Which means plenty of people are waiting much longer OBVIOUSLY!
The state-level stories are the ones that make the numbers human:
Texas: More than 198,000 people are on waiver interest lists. The HCS wait runs 17–18 years. Texas accounts for roughly 30% of the national total, though it's worth noting that Texas and five other states don't screen for eligibility before placing people on lists, which may inflate their numbers somewhat. Still: the wait is real, and it is long.
Colorado: Colorado's Joint Budget Committee voted on March 27, 2026, to cut developmental disability services to close a state budget shortfall. The current seven-year wait for comprehensive HCBS waiver support could double to 14 years if the budget is approved. About 2,800 people are currently on the waitlist.
North Carolina: Families who put a child on the Innovations Waiver today may not receive services for 20 years. Twenty years is not a planning horizon, it's most of a childhood.
Washington D.C.: After decades with no waitlist at all, DC activated its first-ever IDD waiver waitlist in October 2025 following a $1.6 million funding cut. DC had been something of a national model for waitlist elimination. That model is now gone.
Here's what people don't want to hear: even if states suddenly had unlimited HCBS funding, the waitlists couldn't clear quickly. Serving 600,000 more people in HCBS programs requires 600,000 more people receiving ongoing services from caregivers and there aren't enough caregivers.
The demographic wave driving HCBS demand is the same wave making workforce recruitment harder. PHI National projects the direct care workforce gap will reach 9.3 million unfilled positions by 2031.
You cannot hire your way out of a structural workforce shortage in months. Training pipelines, compensation reform, and workforce development take years.
Which brings us to the part of the conversation that most policy coverage never reaches.
Here's the uncomfortable truth that sits underneath the waitlist conversation: the agencies that are serving people right now (And I am talking about the ones that have enrollment slots and active clients) are often not running at full capacity. Not because they don't want to. Because their internal systems are creating friction that eats into the time, resources, and bandwidth they need to serve more people effectively.
This is not a criticism. It's a description of a systemic problem that software and operational investment can meaningfully address.
Every conversation about the caregiver shortage focuses on recruitment - finding more people to fill roles. The harder, more honest conversation is about how efficiently the caregivers you already have are spending their time.
When a caregiver spends 45 minutes correcting EVV exceptions at the end of a shift, that's time not spent with a client.
When scheduling is managed manually across spreadsheets and group texts, coordinators spend hours each week on logistics that software handles in minutes.
When documentation requires re-entry across disconnected systems, every administrative task takes longer than it should. Add it up across a full caseload and the picture becomes clear: many agencies are running their direct care workforce at 80% of its effective capacity because of administrative friction, not because of a shortage of willing caregivers.
Scheduling software that reduces missed visits and caregiver burnout is part of the answer, not because it replaces caregivers, but because it makes sure the caregivers who are there are where they're supposed to be, on time, with the right information.
And EVV-integrated scheduling eliminates the double-entry and exception-correction cycle that drains coordinator time every single day.
This one is specific and underreported. When an HCBS agency has an open client slot because a client transitioned to another setting, or passed away, or chose a different provider that slot sits empty while the agency goes through its hiring and onboarding process.
For agencies running manual onboarding, this can take six to eight weeks from offer acceptance to a caregiver's first solo shift: background check tracking through multiple systems, paper-based training completion, certification verification, manual scheduling setup.
During those six to eight weeks, the slot is unfilled. The service is not being delivered. A person who could have moved off a waitlist didn't. And the agency is paying for administrative overhead on a slot that isn't generating revenue.
Agencies with streamlined, software-supported onboarding consistently cut this timeline to two to three weeks. That's not a marginal improvement. It's the difference between a slot that's empty for six weeks and a slot that's empty for two.
For HCBS agencies (for me particularly those running I/DD services, self-direction FMS programs, or Medicaid waiver billing) administrative complexity is a direct drain on the resources available for care delivery. Agencies running on outdated billing software or spreadsheet-based FMS management often find that a disproportionate share of their staff is doing back-office work rather than coordinating care.
The numbers vary by agency, but the pattern is consistent: a small I/DD provider running on legacy systems might have one full-time billing coordinator for every 40 to 50 participants.
Modern, integrated platforms cut that ratio dramatically, freeing up both cost and administrative bandwidth for direct service coordination. Medicaid waiver billing that avoids denials in HCBS isn't just about preventing revenue loss, it's about eliminating the rework cycle that consumes coordinator time that should be going toward client services.
And for agencies running self-direction programs, FMS software built for the actual complexity of self-directed care is the difference between a sustainable operation and one that's perpetually behind on processing.
Ankota has supported care visits for more than 710,000 people.
The national HCBS waiver waitlist is over 600,000 people.
Those two numbers sitting next to each other should produce a visceral reaction, because they mean that the number of people waiting to receive services is roughly equal to the number of people Ankota's platform has helped serve.
This isn't a marketing stat. It's a way to visualize the scale of what we're talking about. The people on those waitlists aren't an abstract policy problem. They're real people, in real families, who have been told to wait, sometimes for the rest of their productive lives!!
The question isn't whether this matters. It clearly does. The question is what any given actor in the system ( be it agency, software company, state, advocacy organization) can actually move.
And for agencies, the answer is clear: you can't expand waiver slots, but you can make sure that every slot you have is filled, every caregiver you employ is working efficiently, every billing claim goes out clean and comes back paid, and your administrative overhead isn't eating the capacity that should be going to the people you serve. It's a mic drop moment having said that.
I want bore you with details of the One Big Beautiful Bill Act which was signed by the Congressional Budget Office. You can read it more about it here.
But what I will mention here is how it is relevant to home care agencies. For agencies, it means operationally, the pressure to demonstrate efficiency, outcomes, and value is going to increase, because states making hard choices about limited funds will allocate to providers who can demonstrate they're using those funds well.
Our analysis of what separates the agencies that will thrive in 2030 keeps coming back to this same theme: the ones that survive difficult funding environments are the ones that have built efficient, documented, technology-supported operations, not the ones running on goodwill and spreadsheets.
It would be wrong to write an article about HCBS waitlists without mentioning New Mexico, because New Mexico did something almost nobody thought was possible: it eliminated its DD waiver waitlist entirely. SHOCKING, I KNOW RIGHT!!!
New Mexico historically had the longest per-person wait in the country: 12 to 16 years for DD Waiver services. Starting in 2021, the state launched a "Super Allocation" initiative that has effectively eliminated the DD waiver waitlist. FY2026 includes funding for a sustained "no waitlist" policy.
New Mexico isn't a rich state. It didn't solve this through a windfall of federal money. It solved it through sustained, deliberate policy choices over five years:
prioritizing HCBS expansion even in tight budget environments
committing to a specific enrollment target
holding itself accountable to actually reaching it
It's a proof point that waitlist reduction is possible when it's treated as a policy priority rather than a background condition.
The model isn't easily transferable of course as New Mexico's overall HCBS caseload is small by national standards, and its policy environment has specific characteristics. But it matters as an existence proof. Waitlists are not inevitable. They are a policy choice. And that means they can be unchoosen.
This article isn't primarily a policy piece. It's for the agencies doing the work every day in a system that makes it hard. Here's where the operational conversation lands in concrete actions.
Before you can fix a capacity problem, you need to know you have one. Pull your data: how many authorized slots does your agency have? How many are currently filled? How long, on average, does it take a slot to go from open to filled?
From my experience when most agencies track this, the answer produces at least some discomfort because the gap between authorized capacity and actual utilization represents real people who could have been served.
How long does it actually take from "we made an offer" to "caregiver is serving their first client solo"? Get the real number, not the ideal one. If the answer is six weeks or more, the onboarding process is a capacity constraint that software can help address. If the answer is two to three weeks, you're already in good shape on this metric.
How many coordinator or administrative FTEs are you running per 100 participants? What would that ratio be if your billing, documentation, and scheduling were fully integrated? The gap between your actual ratio and your theoretical ratio is a measure of the administrative overhead your technology stack is adding.
HCBS software solutions that connect documentation, billing, and scheduling are the structural answer to this ratio problem.
Every denied claim is revenue that should have funded care delivery. If your Medicaid waiver billing denial rate is above 5%, you're losing meaningful money to preventable errors and you're also consuming coordinator time on rework that should be going toward participant services.
A denial rate under 5% is achievable with the right billing infrastructure. Above 10% is a systematic problem. Know your number. The agencies quietly leaking revenue are often the same ones operating with insufficient administrative capacity to serve their full caseload.
When states make hard choices about limited HCBS funding, the agencies that get prioritized are the ones that can demonstrate outcomes. Measuring what matters in disability services isn't just a compliance exercise, it's a competitive differentiator when your state is deciding who gets new slots and who doesn't.
If your agency can walk into a state Medicaid meeting and show data on client outcomes, community integration, and service reliability, then trust me, you are in a fundamentally different position than the agency that shows up with an anecdote and a handshake.
The waitlist crisis is a system problem. But within that system, individual agencies have meaningful choices about how efficiently they operate, how many people they serve within their authorized capacity, and how much of their Medicaid funding actually reaches the people it's meant to serv.
Ankota was built for exactly this operational reality, for I/DD providers managing complex waiver billing and documentation, for self-direction FMS organizations processing participant-directed services, for HCBS agencies running multiple service lines from a single platform.
The best software for managing I/DD HCBS programs isn't the one with the most feature, it's the one that reduces the administrative load enough that coordinators spend their time on participants rather than paperwork.
For agencies thinking about their long-term positioning in an increasingly constrained funding environment (where states will have fewer resources and more demand) the path forward is clear: choose the right software for disability services, invest in operational efficiency, and build the documentation infrastructure that lets you demonstrate value to your state Medicaid program.
Want to understand where your agency's operational capacity actually stands — and what inefficiencies are limiting the number of people you can serve? Talk to our team. We'll walk through your current service mix, your billing and scheduling infrastructure, and where connected software can free up the capacity that's sitting untapped right now.
According to the KFF's 2025 national survey, more than 600,000 people were on HCBS waiver waiting or interest lists across 41 states in 2025. This number has remained above 500,000 every year since 2016. In 2025, 29 states reported an increase in their waitlist numbers, while only 12 reported a decrease. The national total is driven substantially by Texas, which accounts for roughly 30% of the total — though some states including Texas count interest lists that include people who may not ultimately qualify for services.
Which states have the longest HCBS waiver wait times in 2026?Among the most severe: Texas (17–18 year wait for HCS waiver services), North Carolina (up to 20 years for Innovations Waiver), Colorado (a 7-year wait projected to reach 14 years following 2026 budget cuts), and Florida (roughly 17,000 people on the iBudget Waiver pre-enrollment list). For autism waivers nationally, the average wait is 63 months — over five years. A notable positive exception: New Mexico successfully eliminated its DD waiver waitlist through sustained policy investment starting in 2021, and FY2026 includes funding to maintain a no-waitlist policy. Full state-by-state data is available from the 2026 state-by-state waitlist guide.
Why does HCBS have waitlists if Medicaid is supposed to cover home care?HCBS waiver services are not an entitlement under Medicaid — unlike hospital care or physician visits, which Medicaid must provide to all eligible beneficiaries. HCBS waivers are optional, and states can cap the number of people enrolled. When enrollment slots are full, eligible individuals are placed on waitlists until a slot becomes available — which can take months, years, or in some states, decades. This structural feature of how HCBS is funded is the primary driver of waitlists. Funding increases can reduce waitlists, but they require sustained legislative commitment, and even fully funded programs are constrained by workforce availability.
How can HCBS agencies increase their capacity without more waiver slots?Agencies can increase effective capacity through operational improvements that have nothing to do with state slot allocation. Key areas include: reducing caregiver time lost to administrative tasks (EVV corrections, manual documentation, scheduling gaps); shortening new caregiver onboarding from six to eight weeks down to two to three weeks through integrated software; reducing Medicaid waiver billing denials below 5% to eliminate revenue loss and rework cycles; and decreasing administrative staff ratios through integrated billing, documentation, and scheduling platforms. Together, these improvements can increase the number of people an agency serves within its existing authorized slots by meaningful percentages. HCBS software solutions that connect these workflows are the primary tool for achieving these gains.
What happened to Washington D.C.'s HCBS waitlist in 2025?Washington D.C. activated its first-ever IDD waiver waitlist on October 1, 2025, following a $1.6 million funding cut to its developmental disability services program. DC had previously been notable for having no HCBS waiver waitlist — a policy position it had maintained for decades. The funding cut ended that status. This development is significant as both a symbol and a data point: even jurisdictions that had successfully maintained waitlist-free programs are now facing the same fiscal pressures driving waitlist growth elsewhere.
What is the impact of the One Big Beautiful Bill Act on HCBS waitlists?The One Big Beautiful Bill Act, signed July 4, 2025, includes approximately $911 billion in net Medicaid cuts between 2025 and 2034, according to the Congressional Budget Office. Additionally, the enhanced federal matching funds (FMAP) that helped states expand HCBS programs during and after the pandemic expired January 1, 2026. Together, these changes are reducing states' fiscal flexibility to expand HCBS capacity — which contributed directly to situations like Colorado's 2026 budget cuts that are projected to double its developmental disability waiver wait time. For agencies, this context means increased pressure to demonstrate efficiency and outcomes in a funding environment that is tightening rather than loosening.
Ankota's mission is to enable the Heroes who keep older and disabled people living at home to focus on care because we take care of the tech. If you need software for home care, EVV, I/DD Services, Self-Direction FMS, Adult Day Care centers, or Caregiver Recruiting, please Contact Ankota. And if you're ready to see how the most innovative agencies are using AI to empower their caregivers and automate the rest, meet your new companion at www.kota.care.