House and community-based companies (HCBS) waivers permit states to supply a variety of advantages and to decide on—and restrict—how many individuals obtain companies. The one HCBS that states are required to cowl is house well being, however states might select to cowl private care and different companies equivalent to personal responsibility nursing. These advantages are typically out there to all Medicaid enrollees who want them. States might 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. As a result of waivers might solely be supplied to particular populations, states usually present specialised advantages by way of waivers which can be particular to the inhabitants coated. For instance, states may use an HCBS waiver to supply supported employment solely to individuals underneath age 65.
States’ capacity to cap the variety of individuals enrolled in HCBS waivers can lead to ready lists when the variety of individuals searching for companies exceeds the variety of waiver slots out there. Ready lists replicate the populations a state chooses to serve, the companies it decides to supply, and the assets it commits. As well as, states’ ready record administration approaches differ with regard to prioritization and eligibility screening processes, making comparisons throughout states troublesome. States are solely in a position to make use of ready lists for non-compulsory companies so the variety of individuals on ready lists can enhance when states supply a brand new waiver or make new companies out there inside present waivers; in these instances, the variety of individuals receiving companies will increase, however so does the variety of individuals on a ready record. In lots of instances, individuals may have extra companies, however the state doesn’t supply them to anybody or solely provides them to individuals with sure kinds of disabilities. The unmet wants of these individuals wouldn’t be mirrored within the ready record numbers. Lastly, though individuals might wait a very long time to obtain waiver companies—45 months on common—lots of the individuals ready for companies obtain different kinds of HCBS whereas they wait.
Though HCBS ready lists are an imperfect measure of unmet want, there aren’t any different measures out there. Due to this fact, ready lists stay a supply of concern to policymakers and proposals to get rid of them have been put forth by each Republicans and Democrats. This information be aware gives new details about ready lists from KFF’s most up-to-date survey of state Medicaid HCBS packages, highlighting why ready lists are an incomplete measure of unmet want and why they aren’t comparable throughout states or over time.. KFF additionally just lately offered new ready record indicators on State Well being Info to assist individuals higher perceive who’s on ready lists and what these ready lists imply.
How did the variety of states with ready lists change between 2016 and 2021?
Between 2016 and 2021 the variety of states with ready lists has fluctuated and is at present at a low of 37 states in 2021 (out of the 50 states and DC, Determine 1). Whereas some Reasonably priced Care Act (ACA) opponents have cited waiver ready lists to argue that increasing Medicaid diverts funds from seniors and other people with disabilities, analysis reveals that ACA Medicaid growth has led to good points in protection for individuals with disabilities and continual sicknesses. 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 Nineteen Eighties.
How did the variety of individuals on ready lists change between 2016 and 2021?
The variety of individuals on ready lists fluctuated between 2016 and 2021, from 656,000 in 2016 to 820,000 in 2018, and again to 656,000 in 2021. A contributing issue to these fluctuations—and a motive that ready record numbers aren’t comparable throughout states—is that not all states display for Medicaid eligibility previous to including individuals to ready lists. In 2021, most states (28) with ready lists screened people for waiver eligibility amongst not less than one waiver, however even amongst these states, 7 didn’t display for all waivers. There have been 9 states that don’t display for eligibility amongst any waivers and people 9 states account for over half of all individuals on ready lists. Modifications in whole ready lists over time might replicate adjustments in states’ insurance policies in the direction of eligibility screening (Determine 2).
In all years since 2016, over half of individuals on HCBS ready lists lived in states that didn’t display individuals on ready lists for eligibility. One motive ready lists present an incomplete image of want is that not all individuals on ready lists shall be eligible for companies. Stakeholder interviews about HCBS ready lists discovered that when waiver companies are offered on a first-come, first-served foundation, individuals enrolled in ready lists in anticipation of future want. That research discovered that in some states, households would add their youngsters to ready lists for individuals 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 supply complete HCBS packages that embrace supported employment, supportive housing, or round the clock companies.
When states change their eligibility screening insurance policies, which will trigger massive fluctuations in ready lists. Between 2018 and 2020, the whole variety of individuals on ready lists decreased by 155,000 or 19%. Nonetheless, that change was pushed by a lower within the variety of individuals on ready lists in states that didn’t display for eligibility (110,000 individuals or 22%). The variety of individuals on ready lists in states that did display for eligibility decreased by 45,000 or 14%. Practically all of the change within the nationwide ready record numbers between 2018 and 2020 will be defined by coverage adjustments in two states:
- Louisiana had practically 30,000 individuals on their ready lists for I/DD companies in 2018. That yr, the state carried out a brand new system, Screening for Urgency of Want (SUN) to find out if people required companies quickly to keep away from institutionalization. Those who met the criterion of pressing or emergent want had been supplied with companies. Those who didn’t stay on a registry and are screened at common intervals or upon request, however the state doesn’t think about the registry to be a ready record. By 2020, the ready record was eradicated.
- Ohio had practically 69,000 individuals on their ready record for I/DD companies in 2018. In 2019, they developed a brand new ready record evaluation. Utilizing that evaluation, the state was capable of take away individuals from the ready record who didn’t meet the waiver standards and supply them with different Medicaid or state assets to fulfill their wants when acceptable. In 2020 and 2021, the ready record was solely about 2,000 individuals.
Between 2020 and 2021, ready record enrollment declined by one %. Total, 19 states reported a decline in ready record enrollment, whereas the rest reported a rise (17) or no change (1).
A number of states not function ready lists for sure waivers, together with:
- Minnesota and New Hampshire for individuals with I/DD;
- Missouri for individuals with bodily disabilities;
- West Virginia and Wisconsin for seniors and other people with disabilities;
- Connecticut and Louisiana for individuals with psychological well being wants; and
- Indiana and Kentucky for individuals with traumatic mind or spinal wire accidents.
A smaller variety of states established new ready lists, together with:
- Connecticut and Oregon established a ready record for individuals with I/DD;
- South Carolina established a ready record for individuals with psychological well being wants; and
- North Carolina established a ready record for individuals with traumatic mind or spinal wire accidents.
Who’s on ready lists for HCBS?
Most individuals on ready lists have I/DD, significantly in states that don’t display for waiver eligibility earlier than putting somebody on a ready record. Folks with I/DD comprise 84% of ready lists in states that don’t display for waiver eligibility, in contrast with 60% in states that do decide waiver eligibility earlier than putting somebody on a ready record (Determine 3). Folks with I/DD comprise virtually three-quarters (73%) of the whole waiver ready record inhabitants. Seniors and adults with bodily disabilities account for about one-quarter (24%), whereas the remaining share (2%) contains youngsters who’re medically fragile or know-how dependent, individuals with traumatic mind or spinal wire accidents, and other people with psychological sickness. In 2021, there have been no ready lists for individuals 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 individuals with I/DD comprise fewer than half of the individuals served by way of 1915(c) waivers (the most important supply of Medicaid HCBS spending).
How lengthy do individuals on HCBS ready lists wait to entry companies and have they got entry to HCBS whereas ready?
In 2021, individuals on the ready lists waited a median of 45 months to obtain HCBS waiver companies (29 of 37 states responding), up from 44 months in 2020. Folks with I/DD waited the longest for companies, 67 months on common. The typical ready interval for different waiver populations ranged from 2 months for waivers focusing on seniors to 30 months for waivers that serve medically fragile youngsters. Folks with I/DD residing in states that don’t display for eligibility wait longer for companies than individuals with I/DD residing in states that do display for waiver eligibility (81 months versus 57 months, on common). Virtually all (98%) people at present on a ready record reside locally (26 of 37 states responding).
All 37 states with ready lists prioritize sure people to obtain waiver companies when a slot turns into out there. Twenty-eight states supply waivers that prioritize size of time on the ready lists, and twenty-three states give precedence to people in disaster/emergency standing. Moreover, twenty-one states give precedence to people who find themselves shifting from an establishment to the group. Some states additionally prioritize primarily based on danger of institutionalization (17), by diploma of useful want (11), and age (3). 13 states report different prioritization standards together with COVID-related conditions, homelessness, and cases of abuse/neglect. Most states (31 of 36 responding) use a couple of precedence group. Nationally, states report that over 79,000 people on a ready record had been supplied waivers companies up to now yr (28 of 37 states responding).
Many individuals on HCBS ready lists are receiving different HCBS whereas they wait. Most Medicaid advantages are offered by way of the state plan. States supply quite a lot of HCBS—equivalent to private care to assist with bathing or making ready meals, therapies to assist individuals regain or purchase unbiased residing expertise, and assistive know-how—by way of their state plans. States aren’t allowed to make use of ready lists to limit the variety of individuals eligible to make use of such companies. If individuals on ready lists are eligible for Medicaid HCBS, they’re more likely to be receiving state plan HCBS whereas they wait, which embrace house well being and, in lots of states, private care. They’d not, nevertheless, have entry to extra specialised companies equivalent to supported employment or grownup day care and the state plan HCBS could also be extra restricted than what can be out there by way of a waiver. Particularly, not all states supply private care and amongst those who do, many states select to restrict companies to particular websites or supplier varieties; or to use utilization controls on the variety of hours obtained or prices incurred.
Of 36 states that responded to the query in 2021, all however 5 (FL, IL, IN, ND, PA) reported that people on a ready record had been receiving state plan HCBS. States additionally produce other authorities to supply HCBS to individuals on ready lists, together with providing waiver companies to youngsters by way of the Early Periodic Screening, Prognosis, and Therapy authority or utilizing a number of, tiered waivers that present differing kinds and intensities of companies. Medicaid enrollees can obtain waiver companies from one waiver whereas they’re on a ready record for one more.
Trying forward, shortages of direct care staff might proceed to create issues for states searching for to scale back the variety of individuals on ready lists. States reported workforce shortages of direct care staff as the first affect of the COVID-19 pandemic throughout all HCBS settings in KFF’s most up-to-date survey of state HCBS packages. Ready lists might replicate each shortages of staff and inadequate state funds. Because the pandemic continued, an growing variety of states reported supplier closures with practically all (44) states reporting {that a} supplier had closed as of 2022. Though states responded to that problem by growing supplier cost charges and growing alternatives for individuals to self-direct their companies, workforce challenges persist. It stays to be seen how coverage adjustments enacted in the course of the pandemic will have an effect on the availability of HCBS in future years and whether or not the investments in HCBS by way of the American Rescue Plan Act will lead to capability will increase even after the federal funding ends.