Medicaid is the first payer for long-term companies and helps (LTSS) in america, and pays for greater than two-thirds of the LTSS delivered in home- and community-based settings (HCBS). Most HCBS are optionally available for states to supply and are provided by “waivers,” which permit states to supply a variety of advantages and to decide on—and restrict—the quantity of people that obtain companies. The one HCBS that states are required to cowl is dwelling well being, however states might select to cowl private care and different companies, equivalent to non-public obligation nursing by the Medicaid state plan. States use HCBS waivers to supply expanded private care advantages or to supply extra companies equivalent to grownup day care, supported employment, and non-medical transportation. States additionally use waivers to supply specialised advantages which can be particular to the inhabitants lined, equivalent to offering supported employment solely to folks underneath age 65. KFF estimates that 4.5 million Medicaid enrollees use HCBS, and that the numbers of individuals utilizing HCBS by the state plan are just like the numbers utilizing HCBS by waivers. A state’s skill to cap the variety of folks enrolled in HCBS waivers can lead to ready lists when the variety of folks in search of companies exceeds the variety of waiver slots accessible.
This information notice offers new details about ready lists from KFF’s most up-to-date survey of state Medicaid HCBS packages, together with a dialogue of why ready lists are an incomplete measure of unmet want and why they don’t seem to be essentially comparable throughout states or over time, regardless of KFF’s efforts to acquire as constant information as attainable (see Field 1). Key takeaways embody:
The variety of states that keep ready lists or curiosity lists for individuals who want to obtain HCBS has fluctuated little between 2016 and 2024.
In most years since 2016, there have been roughly 0.7 million folks on ready lists or curiosity lists, with a complete of over 710,000 in 2024.
Most individuals on ready lists or curiosity lists have mental or developmental disabilities and most stay in states that don’t display screen any folks for eligibility previous to including them to ready lists.
Most individuals on ready lists or curiosity lists are eligible for private care offered by states’ common Medicaid packages or for companies offered by specialised state plan HCBS advantages.
KFF additionally not too long ago up to date the ready record indicators on State Well being Details, which present information by state and goal inhabitants.
Ready lists present a sign of people that might have companies they don’t seem to be receiving, however they’re an incomplete measure of unmet want as a result of they don’t embody folks with unmet wants in states that don’t cowl the relevant companies (and subsequently, haven’t any ready record). Ready lists mirror the populations a state chooses to serve, the companies it decides to supply, the sources it commits, and the provision of employees to supply companies. As well as, states’ approaches to managing ready lists differ in how they prioritize and display screen for eligibility, making comparisons throughout states tough. States are solely in a position to make use of ready lists for optionally available companies so the variety of folks on ready lists can improve when states provide a brand new waiver or make new companies accessible inside current waivers; in these circumstances, the variety of folks receiving companies will increase, however so does the variety of folks on a ready record. Lastly, though folks might wait a very long time to obtain waiver companies—40 months on common in 2024—most individuals are eligible for different sorts of HCBS whereas they wait.
Despite the fact that HCBS ready lists are an imperfect measure of unmet want, there aren’t any different various measures accessible. Many HCBS packages have been enacted or expanded in response to the Olmstead determination, a courtroom ruling that discovered the unjustified institutionalization of individuals with disabilities is unlawful discrimination. As 2024 marked the twenty fifth anniversary of Olmstead, ready lists are generally described as contributing to the chance of pointless institutionalization for folks with disabilities, and Democrats and Republicans alike proposed laws in 2024 to deal with them. Beginning in 2027, states can be required to report the variety of folks on ready lists as required underneath a remaining rule on entry to Medicaid companies.
How did the variety of states with ready lists change between 2016 and 2024?
Between 2016 and 2024 the variety of states with ready lists has fluctuated between 37 and 41 and is at the moment at 40 states (Determine 1). Whereas some Inexpensive Care Act (ACA) opponents have cited waiver ready lists to argue that increasing Medicaid diverts funds from seniors and folks with disabilities, analysis reveals that ACA Medicaid growth has led to features in protection for folks with disabilities and continual diseases. Ready lists for HCBS predate the ACA Medicaid growth, which turned efficient in most states in 2014, and each growth and non-expansion states have ready lists. Waiver enrollment caps have existed since HCBS waiver authority was added to federal Medicaid regulation within the early Eighties.
Field 1: Modifications to KFF’s Survey on Ready Lists and Curiosity Lists, Beginning in 2023
Beginning in 2023, KFF requested states to report the entire quantity of people that have been on a “ready record, referral record, curiosity record, or one other time period” for HCBS whereas surveys from 2022 and prior years solely requested about ready lists or referral lists. The change displays states’ growing use of phrases apart from “ready record” to maintain observe of people that had expressed curiosity in HCBS however will not be receiving companies. KFF broadened the survey to extend the comparability of information throughout states and throughout years as a result of states have been transitioning to completely different phrases.
Previous to 2023, some states used phrases apart from ready lists to explain their lists and reported information within the KFF survey, however periodically a state would change its terminology and method, leading to what appeared a big fluctuation within the variety of folks on “ready lists.” For instance, in 2018, Louisiana had practically 30,000 folks on a ready record for his or her mental or developmental incapacity waiver. The state applied a brand new system to display screen folks for pressing HCBS wants. Those who met the standards for pressing wants have been positioned instantly in companies and folks with much less urgent wants have been positioned on a “registry” that changed the older ready record. By 2020, the ready record was eradicated. KFF’s evaluation was {that a} broader survey query would seize information extra constantly, offering for extra significant comparisons between states.
In 2024, there have been barely extra folks on curiosity lists (356,440) than on ready lists (354,299). The usage of the time period “curiosity lists” has necessary ramifications for a latest rule on Medicaid entry. Though the ultimate rule would solely require states to report folks if they’re on ready lists, the preamble to the rule signifies CMS’ intent for states to report all sorts of lists.
A smaller change to KFF’s survey was to ask the states to report the variety of folks on the ready record on the time the survey was accomplished moderately than within the prior yr. Within the spring of 2023, KFF requested states to report the variety of folks on ready lists in 2022, but in addition the variety of folks at the moment on the record. Beginning in 2024, the survey solely asks states to report the variety of folks at the moment on the record.
There have been extra adjustments in ready lists for particular sorts of waivers, nonetheless. Georgia, Kentucky, and West Virginia reported new lists for seniors/adults with bodily disabilities (with a mixed 2,683 folks) and Alaska, Connecticut, South Dakota, and Washington reported new lists for folks with mental or developmental disabilities (I/DD, with a mixed 13,251 folks on the lists). New Jersey newly reported a ready record of practically 2,700 folks for its Neighborhood Care program, which serves folks with I/DD and is a part of the state’s bigger 1115 waiver.
How did the variety of folks on ready lists change between 2016 and 2024?
In most years between 2016 and 2024, roughly 0.7 million folks have been on ready lists or curiosity lists for HCBS (Determine 2). Between 2023 and 2024, complete enrollment in ready lists and curiosity lists elevated by 2.6%. General, there was a rise within the variety of folks on ready or curiosity lists in 19 states and a lower in 14 states.
One issue that contributes to adjustments over time—particularly the notable decline between 2018 and 2020—is that not all states display screen for Medicaid eligibility previous to including folks to ready lists and adjustments on this coverage might end in adjustments in ready record volumes. For instance, between 2018 and 2020, the entire variety of folks on ready lists decreased by 155,000 or 19%. Nonetheless, practically half of that change got here from Ohio’s implementation of a ready record evaluation of waiver eligibility, which decreased the scale of the state’s ready record by practically 70,000 folks. In 2024, most states (32) with ready lists display screen people for waiver eligibility amongst no less than one waiver, however even amongst these states, 4 don’t display screen for all waivers. The 8 states that don’t display screen for eligibility amongst any waivers (Alaska, Illinois, Iowa, Oklahoma, Oregon, South Carolina, Texas, and Washington) account for over half of all folks on ready lists.
In all years since 2016, over half of individuals on HCBS ready lists or curiosity lists lived in states that didn’t display screen folks on ready lists for eligibility. One motive ready lists present an incomplete image of want is that not all folks on ready lists can be eligible for companies. Interviews about HCBS ready lists discovered that when waiver companies are offered on a first-come, first-served foundation, folks enrolled in ready lists are in anticipation of future want. That examine discovered that in some states, households would add their youngsters to ready lists for folks with mental or developmental disabilities (I/DD) at a younger age, assuming that by the point they reached the highest of the ready record, their youngsters would have developed the fast want for companies. A lot of these waivers provide complete HCBS packages that embody supported employment, supportive housing, or round the clock companies. Among the many eight states that don’t display screen folks for eligibility on any lists, six have solely ready lists, one (Texas) has solely curiosity lists, and one (Washington) makes use of each. (Illinois doesn’t set up eligibility till choice however does a preliminary analysis of eligibility previous to inserting somebody on the record.)
Between 2023 and 2024, a number of states made adjustments to their ready record insurance policies that resulted in notable adjustments within the variety of folks on a particular ready record:
Illinois applied a brand new regulation requiring college workers to debate companies for kids with developmental disabilities in sure conditions. The variety of folks on these two ready lists elevated from 14,444 to fifteen,905.
Iowa applied a brand new course of for assessing folks’s want for companies to maneuver folks with emergent wants increased on the ready lists for waivers serving seniors/adults with bodily disabilities and folks with psychological well being wants. The variety of folks on the psychological well being ready record elevated from 802 to 1,128 and on the seniors/adults with bodily disabilities ready record elevated from 9,684 to 10,508.
For its I/DD waiver serving youngsters with Autism, Maryland added a screening name for candidates to make sure that youngsters have an Individualized Household Service Plan or Individualized Schooling Program, and no less than 15 hours every week of particular training or associated companies previous to including folks to the ready record. The change decreased the variety of folks on the ready record from 6,431 to five,280.
Who’s on ready lists for HCBS?
Most individuals on ready lists have mental or developmental disabilities (I/DD), significantly in states that don’t display screen for waiver eligibility earlier than inserting somebody on a ready record. Folks on ready lists for waivers serving folks with I/DD (which embody waivers particular to individuals who have Autism) comprise 89% of ready lists in states that don’t display screen for waiver eligibility, in contrast with 49% in states that do decide waiver eligibility earlier than inserting somebody on a ready record (Determine 3). Folks with I/DD comprise virtually three-quarters (73%) of the entire waiver ready record inhabitants. Seniors and adults with bodily disabilities account for one-quarter (24%), whereas the remaining share (3%) contains youngsters who’re medically fragile or know-how dependent, folks with traumatic mind or spinal twine accidents, folks with psychological sickness, and folks with HIV/AIDS. People who find themselves on HCBS ready lists are typically not consultant of the Medicaid inhabitants or the inhabitants that makes use of HCBS. Most individuals on ready lists have I/DD, however KFF evaluation reveals that folks with I/DD comprise fewer than half of the folks served by 1915(c) waivers (the most important supply of Medicaid HCBS spending).
How lengthy do folks on HCBS ready lists wait to entry companies and have they got entry to HCBS whereas ready?
In 2024, folks on the ready or curiosity lists accessed companies after a median of 40 months (32 of 40 states responding), down from 45 months in 2021, however up from 36 months in 2023. Folks with I/DD waited the longest for companies, 50 months on common. The typical ready interval for different waiver populations ranged from 6 months for waivers concentrating on people with psychological sickness to 44 months for waivers that serve youngsters. Folks with I/DD residing in states that don’t display screen for eligibility wait longer for companies than folks with I/DD residing in states that do display screen for waiver eligibility (70 months versus 43 months, on common).
Most individuals on ready or curiosity lists are eligible to obtain different sorts of HCBS whereas they wait. Among the many 710,000 folks on lists for waiver companies in 2024, dwelling preparations are unknown for greater than 560,000. Among the many folks whose dwelling preparations are identified, 98% (147,000) stay in the neighborhood and a couple of% (3,300) stay in institutional settings. Whereas ready for waiver companies, folks dwelling in the neighborhood are prone to be eligible for different HCBS by Medicaid state plans. Of the over 4 million individuals who use HCBS, KFF estimates that roughly half use companies offered by the Medicaid state plan, equivalent to private care to assist with bathing or getting ready meals, therapies to assist folks regain or purchase unbiased dwelling expertise, and assistive know-how. States might not use ready lists to limit the variety of folks eligible to make use of such companies and over 80% of individuals on HCBS ready lists are eligible for private care or different state plan companies. They might not, nonetheless, have entry to extra specialised companies equivalent to supported employment or grownup day care. Folks on ready lists who obtain state plan companies might also have fewer hours of private care than they might in a waiver program, or they could not have help with a number of the actions they need assistance with equivalent to bathing, dressing, getting ready meals, or managing remedy.
How are workforce shortages and adjustments in federal coverage affecting HCBS ready lists?
Though ready lists might mirror states’ funds constraints, states additionally use ready lists to handle shortages of HCBS employees, and with ongoing workforce shortages, it could be tough to meaningfully cut back ready lists. Rhode Island and West Virginia newly reported ready lists due to workforce shortages. In Rhode Island, the ready record captures people who find themselves eligible for and enrolled of their 1115 waiver however will not be receiving dwelling care due to supplier shortages. The state famous that supplier shortages differ throughout communities, and that some folks ready for the licensed companies could be dwelling in establishments and ready to transition to neighborhood dwelling. West Virginia’s new ready record for his or her psychological well being waiver displays a scarcity of employees accepting new sufferers. Workforce shortages will not be distinctive to Rhode Island and West Virginia, they have been reported by all responding states in KFF’s 2023 survey of HCBS packages. It’s unlikely that there can be main adjustments in states’ ready lists for HCBS with out corresponding adjustments within the availability of HCBS employees.
As states exhaust expanded federal funding for HCBS from the American Rescue Plan Act (ARPA), addressing ready lists might turn into harder. Part 9817 of the ARPA offered states with an extra 10 share factors of federal funding for his or her Medicaid HCBS expenditures between April 1, 2021, and March 31, 2022. States have been required to reinvest this extra federal funding into Medicaid HCBS, leading to an estimated $37 billion in new HCBS funding. As of December 31, 2023, the primary use of the ARPA funds—accounting for greater than $26 billion of the deliberate $37 billion in new funding—was for workforce recruitment and retention. The second largest allocation (an extra $4 billion) was for workforce coaching. The tip of additional workforce-oriented funding may exacerbate workforce challenges, doubtlessly growing ready lists, and states deliberate to spend virtually $2 billion instantly on lowering or eliminating ready lists.
The extra ARPA funding will finish in most states by March 2025, though 4 states (Missouri, South Dakota, Virginia, and Washington) had already exhausted their funds by August 2024 and 13 states (Alaska, Georgia, Kansas, Maine, Michigan, Montana, North Dakota, New Jersey, New Mexico, Ohio, Pennsylvania, Vermont, and Wisconsin) have obtained extensions. Three states (California, New Mexico, and Texas), which collectively accounted for over half of the folks on ready lists in 2024, reported utilizing ARPA funding to cut back or eradicate ready lists and that persevering with these reductions are a prime precedence. Nonetheless, it’s unsure what number of ARPA initiatives can be sustainable in the long term as the extra federal funds are exhausted.
A brand new rule on entry to Medicaid companies would require states to report extra details about folks ready for HCBS waiver companies beginning in July 2027. The brand new rule requires states to report the variety of people who find themselves ready to enroll in a waiver program, data on whether or not the folks on the record have been screened for eligibility, and the typical period of time folks newly enrolled within the waiver over the previous 12 months had spent ready to enroll. Though the regulation doesn’t point out curiosity lists, referral lists, or registries, the preamble to the rule signifies CMS’ intent for states to report all sorts of lists.
Recognizing that ready lists are an imperfect measure of unmet want, the rule additionally requires states to report two new measures associated to entry to take care of folks newly receiving waiver companies. For individuals who started receiving waiver companies prior to now 12 months, states should additionally report: (1) the typical size of time between approval for homemaker, dwelling well being aide, private care, and habilitation companies and the beginning of companies and (2) the % of licensed hours that have been offered. (States might report the latter two measures for a “statistically legitimate” random pattern of recipients.)
Regardless of the improved information states can be required to report, ready record and waiver data will stay imperfect measures of unmet want. Not one of the new information will mirror how lengthy it takes for folks to obtain HCBS offered by the Medicaid state plan, or how complete these companies are. The brand new information additionally don’t seize the variety of folks whose licensed companies are under wanted ranges due to hourly or greenback caps on the quantity of HCBS they’ll obtain. With most individuals on ready lists nonetheless eligible for state plan companies, understanding what companies they obtain whereas ready can also be a dimension in understanding how acute the wants are amongst folks on ready lists. Extra broadly, the ready record numbers, and related necessities, apply to waiver companies solely, that are optionally available for states to supply. New information will provide perception into unmet wants amongst folks receiving and ready for optionally available companies, however there’ll nonetheless be little details about individuals who want HCBS however will not be receiving care.
