A Look at Waiting Lists for Medicaid Home- and Community-Based Services from 2016 to 2023


House- and community-based services and products (HCBS) waivers permit states to provide quite a lot of advantages and to select—and prohibit—the quantity of people that obtain services and products. The one HCBS that states are required to cover is house well being, however states might make a choice to hide private care and different services and products comparable to personal accountability nursing throughout the Medicaid state plan. The ones advantages are in most cases to be had to all Medicaid enrollees who want them. States might use HCBS waivers to provide expanded private care advantages or to supply further services and products comparable to grownup day care, supported employment, and non-medical transportation. As a result of waivers might best be presented to precise populations, states ceaselessly supply specialised advantages thru waivers which are explicit to the inhabitants coated, comparable to offering supported employment best to folks beneath age 65. KFF estimates that over 4 million Medicaid enrollees use HCBS, and that the numbers of folks the use of HCBS throughout the state plan are very similar to the numbers the use of HCBS thru waivers.

States’ skill to cap the selection of folks enrolled in HCBS waivers may end up in ready lists when the selection of folks looking for services and products exceeds the selection of waiver slots to be had. Ready lists replicate the populations a state chooses to serve, the services and products it makes a decision to supply, the sources it commits, and the availability of workers to supply services and products. As well as, states’ ready checklist control approaches differ with reference to prioritization and eligibility screening processes, making comparisons throughout states tough. States are best in a position to make use of ready lists for non-compulsory services and products so the selection of folks on ready lists can build up when states be offering a brand new waiver or make new services and products to be had inside current waivers; in those circumstances, the selection of folks receiving services and products will increase, however so does the selection of folks on a ready checklist. In lots of circumstances, folks might want further services and products, however the state doesn’t be offering them to someone or best provides them to folks with positive sorts of disabilities. Ready lists would no longer seize the unmet wishes of the ones folks. In any case, even if folks might wait a very long time to obtain waiver services and products—36 months on reasonable—the general public are eligible for different sorts of HCBS whilst they wait.

Even if HCBS ready lists are a less than excellent measure of unmet want, there aren’t any selection measures to be had. Many HCBS systems had been enacted or expanded in line with the Olmstead decision, a courtroom ruling that discovered the unjustified institutionalization of folks with disabilities is unlawful discrimination. Because the 25th anniversary of Olmstead nears, ready lists are now and again described as contributing to the danger of pointless institutionalization for folks with disabilities, and coverage makers throughout political events have proposals to handle them. A up to date proposed rule will require states to file the selection of persons are on ready lists however isn’t transparent how that requirement could be outlined.

This knowledge word supplies new details about ready lists from KFF’s maximum recent survey of state Medicaid HCBS systems, together with a dialogue of why ready lists are an incomplete measure of unmet want and why they don’t seem to be essentially related throughout states or through the years. Within the 2023 survey, KFF requested states to file the quantity of people that had been on “pastime” lists for HCBS, in addition to ready lists, a distinction from prior years (see Field 1). Key takeaways come with:

  • The selection of states that care for ready lists or pastime lists for individuals who want to obtain HCBS has fluctuated little between 2016 and 2023.
  • In maximum years since 2016, there were just about 0.7 million folks on ready lists or pastime lists, with a complete of over 692,000 in 2023.
  • Most of the people on ready lists or pastime lists have highbrow or developmental disabilities and maximum reside in states that don’t display any folks for eligibility previous to including them to ready lists.
  • Most of the people on ready lists or pastime lists are eligible for private care supplied thru states’ common Medicaid systems or for services and products supplied thru specialised state plan HCBS advantages.

KFF additionally just lately up to date the ready checklist signs on State Health Facts to assist folks higher perceive who’s on ready lists and what the ones ready lists imply.

How did the selection of states with ready lists exchange between 2016 and 2023?

Between 2016 and 2023 the selection of states with ready lists has fluctuated between 35 and 41 and is these days at 38 states (Determine 1). Whilst some Inexpensive Care Act (ACA) combatants have cited waiver ready lists to argue that increasing Medicaid diverts price range from seniors and folks with disabilities, analysis presentations that ACA Medicaid enlargement has resulted in positive factors in protection for folks with disabilities and protracted diseases. Ready lists for HCBS predate the ACA Medicaid enlargement, which turned into efficient in maximum states in 2014, and each enlargement and non-expansion states have ready lists. Waiver enrollment caps have existed since HCBS waiver authority used to be added to federal Medicaid legislation within the early Nineteen Eighties.

Field 1: Adjustments to KFF’s 2023 Survey on Ready Lists and Hobby Lists

In 2023, KFF requested states to file the whole quantity of people that had been on a “ready checklist, referral checklist, pastime checklist, or some other time period” for HCBS while older surveys best requested about ready lists or referral lists. The exchange displays states’ expanding use of phrases rather than “ready checklist” to stay monitor of people that had expressed pastime in HCBS however don’t seem to be receiving services and products. KFF broadened the survey to extend the comparison of information throughout states and throughout years if states transition to make use of of various phrases.

Previous to 2023, some states used phrases rather than ready lists to explain their lists and reported information within the KFF survey, however periodically a state would exchange its terminology and way, leading to what gave the impression a big fluctuation within the selection of folks on “ready lists.” As an example, in 2018, Louisiana had just about 30,000 folks on a ready checklist for his or her highbrow or developmental incapacity waiver. The state carried out a brand new gadget to display folks for pressing HCBS wishes. Those who met the factors for pressing wishes had been positioned right away in services and products and folks with much less urgent wishes had been put on a “registry” that changed the older ready checklist. Via 2020, the ready checklist used to be eradicated. KFF’s evaluate is that the wider survey query will seize information which are as in keeping with the older years’ information as imaginable and supply for extra significant comparisons between states.

When requested in particular, the 2023 survey confirmed how common the usage of pastime lists used to be: In 2023, there have been extra folks on pastime lists (361,000) than on ready lists (331,000). Using the time period “pastime lists” has essential ramifications for a proposed rule on Medicaid get right of entry to. Beneath that rule, states could be required to file the selection of folks on ready lists, however it’s unclear whether or not the requirement would follow to lists which are described as pastime lists or registries.

A smaller exchange to KFF’s survey in 2023 used to be to invite the states to file the selection of folks at the ready checklist on the time the survey used to be finished. Traditionally, KFF requested states to file the selection of folks on ready lists within the prior yr. Within the spring of 2023, KFF requested states to file the selection of folks on ready lists in 2022, but additionally the selection of folks these days at the checklist. Years to come’ surveys will best ask about present ready checklist numbers.

In spite of the adjustments to KFF’s survey query, there have been few adjustments within the selection of states that reported any ready lists between the 2022 survey (which asked information from 2021) and the 2023 survey. There have been extra adjustments in ready lists for explicit sorts of waivers, alternatively, with 3 states getting rid of ready lists for explicit waivers, together with Connecticut for folks with highbrow or developmental disabilities, and North Carolina and West Virginia for folks with irritating mind or spinal wire accidents. Connecticut reported a brand new checklist for folks with psychological well being stipulations and South Carolina reported a number of new “processing lists,” that monitor folks’s motion from consumption to enrollment for people who find themselves 65 and older or with bodily disabilities, for medically-fragile or technology-dependent youngsters, for folks with psychological well being stipulations, and for folks with HIV or AIDs.

How did the selection of folks on ready lists exchange between 2016 and 2021?

In maximum years between 2016 and 2023, just about 0.7 million folks had been on ready lists or pastime lists for HCBS (Determine 2). One issue that contributes to adjustments through the years—particularly the notable decline between 2018 and 2020—is that no longer all states display for Medicaid eligibility previous to including folks to ready lists and adjustments on this coverage might lead to adjustments in ready checklist volumes. As an example, between 2018 and 2020, the whole selection of folks on ready lists diminished by means of 155,000 or 19%. On the other hand, just about part of that fluctuate got here from Ohio’s implementation of a ready checklist evaluate of waiver eligibility, which diminished the dimensions of the state’s ready checklist by means of just about 70,000 folks. In 2023, maximum states (32) with ready lists screened people for waiver eligibility amongst a minimum of one waiver, however even amongst the ones states, 5 didn’t display for all waivers. There have been 6 states that don’t display for eligibility amongst any waivers and the ones 6 states (Alaska, Illinois, Iowa, Oklahoma, Oregon, and Texas) account for over part of all folks on ready lists. Adjustments in overall ready lists through the years might replicate adjustments in states’ insurance policies against eligibility screening (Determine 2).

In all years since 2016, over part of folks on HCBS ready lists or pastime lists lived in states that didn’t display folks on ready lists for eligibility. One reason why ready lists supply an incomplete image of want is that no longer all folks on ready lists will probably be eligible for services and products. Stakeholder interviews about HCBS ready lists discovered that once waiver services and products are supplied on a first-come, first-served foundation, folks enrolled in ready lists are in anticipation of long run want. That study discovered that during some states, households would upload their youngsters to ready lists for folks with highbrow or developmental disabilities (I/DD) at a tender age, assuming that by the point they reached the highest of the ready checklist, their youngsters would have advanced the quick want for services and products. Lots of the ones waivers be offering complete HCBS packages that come with supported employment, supportive housing, or round the clock services and products. A few of the six states that don’t display folks for eligibility on any lists, 5 have best ready lists and the 6th makes use of pastime lists (Illinois does no longer identify eligibility till variety however does do a initial analysis of eligibility previous to hanging somebody at the checklist).

Between 2021 and 2023, overall enrollment in ready lists and pastime lists greater by means of 6%. Total, there used to be an build up within the selection of folks on ready or pastime lists in 18 states and a lower in 16 states. Some states had important decreases of their ready lists comparable to New Mexico which used further federal investment from the American Rescue Plan Act to lower their ready checklist for folks with I/DD from 3,500 in 2022 to fewer than 300 in 2023. Virginia’s ready checklist additionally diminished considerably from 23,000 in 2021 to beneath 15,000 in 2022 and 2023.

Will increase in ready lists might replicate advanced information about folks looking for services and products. As an example, Texas revised its questionnaire to assemble extra information about people who find themselves all in favour of HCBS and the selection of folks on ready lists/pastime lists statewide rose from 312,000 in 2021 to 343,000 in 2023. New York is these days construction a portal to trace the services and products gained and the selection of folks looking forward to services and products. The portal will assist goal supplier capability however may additionally display an build up within the selection of folks “ready” for services and products this is due to advanced information assortment quite than an build up in unmet wishes (New York reported that they’d an pastime or referral checklist however that the selection of folks on it used to be unknown).

Who’s on ready lists for HCBS?

Most of the people on ready lists have highbrow or developmental disabilities (I/DD), specifically in states that don’t display for waiver eligibility prior to hanging somebody on a ready checklist. Folks with I/DD include 88% of ready lists in states that don’t display for waiver eligibility, in comparison with 51% in states that do resolve waiver eligibility prior to hanging somebody on a ready checklist (Determine 3). Folks with I/DD include nearly three-quarters (72%) of the whole waiver ready checklist inhabitants. Seniors and adults with bodily disabilities account for one-quarter (25%), whilst the remainder percentage (3%) comprises youngsters who’re medically fragile or know-how dependent, folks with irritating mind or spinal wire accidents, folks with psychological sickness, and folks with HIV/AIDS. People who find themselves on HCBS ready lists are in most cases no longer consultant of the Medicaid inhabitants or the inhabitants that makes use of HCBS. Most of the people on ready lists have I/DD, however KFF analysis presentations that folks with I/DD include fewer than part of the folk served thru 1915(c) waivers (the biggest supply of Medicaid HCBS spending).

How lengthy do folks on HCBS ready lists wait to get right of entry to services and products and do they’ve get right of entry to to HCBS whilst ready?

In 2023, folks at the ready or pastime lists waited a median of 36 months to obtain HCBS waiver services and products (27 of 38 states responding), down from 45 months in 2021. Folks with I/DD waited the longest for services and products, 50 months on reasonable. The typical ready duration for different waiver populations ranged from 5 months for waivers concentrated on seniors to 37 months for waivers that serve folks with autism. Folks with I/DD living in states that don’t display for eligibility wait longer for services and products than folks with I/DD living in states that do display for waiver eligibility (61 months as opposed to 45 months, on reasonable).

Most of the people on ready or pastime lists are eligible to obtain different sorts of HCBS whilst they wait. A few of the just about 700,000 folks on lists for waiver services and products in 2023, dwelling preparations are unknown for greater than 600,000. A few of the folks whose dwelling preparations are identified, 97% (77,000) lived locally and three% (2,000) lived in institutional settings. Whilst looking forward to waiver services and products, folks dwelling locally usually are eligible for different HCBS thru Medicaid state plans. Of the over 4 million people who use HCBS, KFF estimates that kind of part use services and products supplied throughout the Medicaid state plan, comparable to private care to assist with bathing or making ready foods, treatments to assist folks regain or achieve impartial dwelling abilities, and assistive know-how. States won’t use ready lists to limit the selection of folks eligible to make use of such services and products and over 85% of folks on HCBS ready lists are eligible for private care or different state plan services and products. They wouldn’t, alternatively, have get right of entry to to extra specialised services and products comparable to supported employment or grownup day care. Folks on ready lists who obtain state plan services and products may additionally have fewer hours of private care than they’d in a waiver program, or they won’t have help with one of the crucial actions they want assist with comparable to bathing, dressing, making ready foods, or managing drugs.

What to observe?

How would possibly shortages of HCBS workers create issues for states looking for to cut back the selection of folks on ready lists? The COVID-19 pandemic exacerbated current staff shortages throughout all HCBS settings and KFF’s most up-to-date survey of state HCBS systems highlighted states efforts to take a look at and cope with the ones shortages. Ready lists might replicate each shortages of employees and inadequate state price range. Despite the fact that states reported expanding supplier cost charges and different efforts to strengthen the staff, demanding situations stay and a few of states’ insurance policies for addressing the ones demanding situations have ended with the realization of pandemic-era systems. It is still noticed how coverage adjustments enacted right through the pandemic will impact the availability of HCBS in years to come and whether or not the investments in HCBS throughout the American Rescue Plan Act will lead to capability will increase even after the federal investment ends.

How would possibly just lately proposed laws impact the selection of folks on ready lists or pastime lists? One proposed rule on Medicaid get right of entry to will require states to file at the selection of folks “who’re ready to join the waiver program,” however it’s unclear whether or not that requirement would additionally follow to pastime lists, which might come with people who find themselves all in favour of services and products however no longer “ready to sign up.” The rule of thumb would make different adjustments, additionally supposed to extend Medicaid enrollees’ get right of entry to to HCBS. Higher get right of entry to to HCBS would build up Medicaid spending, however there’s no new federal investment past the usual federal matching bills supplied to states for Medicaid prices. Investment demanding situations for states could also be specifically related given different doable necessities for extra staffing in nursing homes, which might have a tendency to extend states’ spending on institutional long-term services and products and helps. Every other proposed rule would codify the Olmstead courtroom resolution that calls for services and products to be supplied in essentially the most built-in environment suitable and has spurred many expansions of HCBS waivers.



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