Gelila Selassie: Hi everyone. Thank you for attending today’s webinar, Advocating for Long-Term Care for Nursing Facility Residents in 2025, Repelling Attacks and Moving Forward. I’m Gelila Selassie. I’m an attorney at Justice In Aging, joined by my colleague Eric Carlson, and we thank you for joining today. We can move to the next slide. Just some logistics about the webinar. Everyone is on mute and you’re welcome to use the question function for any substantive questions or if you’re having any technical concerns. If you have any problems getting onto the webinar, please send an email to trainings@justiceinaging.org. And then all of our materials and slides will be available after this training as well as from past trainings. You can go to our resource library to find it, and then a recording will also be posted to Justice In Aging’s Vimeo page, which you can access as well. And then you can enable closed captioning by selecting CC from the Zoom control panel. Next slide.
So at Justice In Aging, we are a national organization that uses the power of law to fight senior poverty. We’ve been doing that since 1972 across healthcare, economic security and elder justice, prioritizing older adults with limited resources and who are the most marginalized. Next slide. And in order to do that, we do have a commitment to achieving equity for the most disenfranchised older adults across, like I said, economic, security, healthcare and housing. We also recognize the enduring harms and inequities caused by systemic racism and other forms of discrimination. And then we try to recruit and retain a diverse staff to help us achieve that very important goal. And then if you want to receive additional trainings or alerts, feel free to join our network. You can go to justiceinaging.org and click sign up or send an email to info@justiceinaging.org.
So just as an overview for today’s webinar, we’ll be discussing quite a few things with varying degree of specificity, since there is a lot to cover. The first is the legislative efforts to cut Medicaid through budget reconciliation. Then I’ll be talking about some possible changes on the type of notice that’s going to be given prior to rulemaking. We’ll look at the status of the nursing facility minimum staffing rule, the lawsuit on nursing facility surveying timeliness, as well as updates to the Surveyor’s Guidelines and some impact of the implementation of the HCBS Access rule. And we’ll leave a few minutes for questions at the end.
And so looking at the legislative efforts to cut Medicaid, just again, this is a really high overview and we have a webinar coming up in a couple weeks that goes into this on more detail. So Medicaid is incredibly critical. Just again, to take it very high level, there are 10 million people with disabilities enrolled in Medicaid along with 7 million seniors. One thing to note about those people with disabilities who are enrolled are that 10 million is often enrolled in a disability-specific Medicaid program. But when we look at Medicaid expansion under the ACA, there are millions more people with disabilities who get Medicaid through Medicaid expansion because getting disability-based Medicaid like SSI can be very difficult to do and can take several years.
And this is especially true for the 50 to 64 population, many of whom have chronic conditions that might affect their ability to work or do daily activities. And so while they’re undergoing the more burdensome process of getting some kind of disability confirmation, they’ll be utilizing Medicaid expansion coverage. And one really important thing to note is that half of all Medicaid spending is on older adults and people with disabilities, and nearly 30% of Medicaid funds are spent on Medicare enrollees. So it’s really important to keep in mind how linked Medicaid is to older adults and people with disabilities.
Medicaid also covers much more than traditional medical services. So we have nursing facility care, Medicaid home and community-based services. There’s non-emergency medical transport, and then there’s financial assistance for Medicare beneficiaries who are duly enrolled in Medicaid. And this is the Medicare Savings Program that’s administered through Medicaid. And it’s worth noting many of these services are not covered by Medicare or Medicare only provides a minimal amount of coverage. So Medicaid is crucial to filling some of those gaps that’s left by Medicare. And then budget reconciliation is a very, very complicated process. We have links to resources, to organizations that have a much more detailed explanation, but just as a primer, right now, Congress is taking action to cut Medicaid along with other things, like SNAP and changes to the ACA subsidies through the budget reconciliation process. It’s formally titled the One Big Beautiful Bill Act. So if you’ve seen that in the news, that’s what it is.
But it’s this budget bill, and they’re using this process to fast track legislation because, under the budget reconciliation process, it only requires a simple majority in the Senate and it’s not subject to filibuster. There’s generally a lot of requirements about what can get through budget reconciliation and what can’t, but the most important requirement for things getting passed through this process is that it has to pertain to the budget. And in this case it’s Medicaid cuts so that other programs can be funded or other priorities can be funded, like extending the tax cuts from 2017. Now, the process starts with the House and Senate adopting instructions for how much to cut from each committee. And these are the budget resolutions. At step two, that’s where the different committees write up the bill language itself, and that’s where we get the detail of what the cuts will be, and then they will hold hearings.
So for the House, the committee in charge of Medicaid is the Energy and Commerce Committee. They have jurisdiction. And Senate Finance Committee has jurisdiction over Medicaid and the Senate. So those are the two that we pay attention to the most. And then step three is the vote on these bills. the House voted in late May, and the Senate is currently considering voting, and they’re hoping to have a vote before the July 4th recess. We’re hoping that could be delayed. And then if they vote and they make any changes, that has to go back to the House as well to get voted on. So there may be multiple amendments that go back and forth between the two chambers. And so just looking at some of the threats to Medicaid, one of the biggest, biggest ones is work requirements.
And again, we’re not going to go through all the provisions in the bill. We’re just highlighting a few of the major ones that could impact our communities. And so what the work requirements do is require all individuals from age 19 to 64 to report at least 80 hours a month of community engagement activities, that’s the language in the bill, which means working, volunteering, or in school or some sort of job training. And the bill claims to exempt caretakers of dependents and people with disabilities, but as we discussed, it’s not quite that straightforward or simple to do.
And so some of the issues with work requirements is that, first of all, the premise that some people don’t want to work and so they’re getting on Medicaid is just false. More than 90% of adults under age 65 who are on Medicaid are either working, they’re in school or they cannot work due to disability or caregiving duties. So it’s a pretty ridiculous premise that people are not working and putting themselves in poverty for Medicaid, when Medicaid, as crucial as it is for their healthcare, doesn’t cover all these other necessary expenses a person may have, like rent or groceries and such.
So the actuality is most people are working or in school, unless they cannot due to some other, what should be exempt, consideration. And then there’s no explanation how to prove disability for a purpose of getting an exemption. So in other public benefits, like with SNAP, also called food stamps, in many instances to be exempt from SNAP work requirements, you have to be receiving some kind of disability benefit, like social security disability, SSI, veterans disability, et cetera. And as I mentioned before, that process can be extremely burdensome and onerous. And so it creates a bit of a catch-22 because, to get these disability benefits, you usually have to show that you have a medical condition that prevents you from working. But how are you able to get that documented medical evidence without healthcare? And so not only is it a months or year long process to get these disability benefits, on top of that, you’re not getting the healthcare that helps show how your disability is affecting your ability to work or do daily activities.
And so this is why a lot people with disabilities need Medicaid expansion right away, instead of dealing with this onerous process of getting formal disability benefits first. And so that’s a huge problem with that exemption. Another problem is it’s not clear what kind of caretakers are exempt. And so that the bill language, it doesn’t suggest that all caregivers, including caregivers for adult children caregiving for aging parents, that’s not clear to be an exemption under the bill. And so that’s really concerning, if that’s not included. And then the other concern is if you have an adult who’s taking care of a disabled sibling, a disabled or aging spouse, these are other problems. So the language that they’re using in the bill strongly suggests that they’re referring to parents of young or minor children as exempt, but it’s not clear that other groups of caregivers would be exempt.
And as we know, caregivers often don’t work or have to cut their hours to care for their family members. And then lastly, states have very broad discretion in what reporting they would require to show you’re meeting that 80-hour a month requirement or that you have an exemption. So it could be monthly, it could be annually, semi-annually. We don’t know. We’ve seen other states briefly implement work requirements, and we’ve known that the reporting aspect of it has always been a huge disaster. So that’s another major concern. And then another aspect of the bill is that there are major burdens on individuals and states. So one is that there are going to be more frequent eligibility verifications for the Medicaid expansion population. So right now, the standard is pretty much all Medicaid groups have annual redeterminations where they submit their documentation, complete paperwork, and show that they still are eligible for Medicaid.
This bill would require that to be six months for the expansion population. And then that increases the likelihood that people will miss their notices, that paperwork gets lost or that there are other issues that terminate coverage, unrelated to their actual eligibility. So in many instances, people will still be eligible for Medicaid, but due to some procedural technical reason, they lose their coverage, if they move or something gets lost or they don’t have the ability to complete the forms timely or they’re not getting help from their Medicaid office to help complete the paperwork and so on. Another huge factor is implementing cost sharing for Medicaid enrollees earning above 100% of the federal poverty level. So this is that Medicaid expansion population who are earning between 100 and 138% of federal poverty. And so that could be up to $35 per visit.
And it’s applies to many, many situations with very limited exceptions. And again, this is really likely just trying to inhibit people from getting medical services, from getting healthcare, because even a few dollars for a population that’s barely at poverty level can still be very crippling and very damaging. Next slide. And so another aspect is the limiting retroactive coverage. Currently, Medicaid has to cover up to three months prior to the month that the person completes the application, if they were eligible during that period. And the bill reduces that three month retroactive period to just one month. And that’s especially harmful for older adults and people with disabilities who need long-term care after a large hospitalizing event. Very often someone who has had a stroke or a fall or other incident will not be eligible for Medicaid until they have that hospitalizing event, so it doesn’t make sense for them to apply for a program they’re not eligible for until they have this medical incident.
And then recovery can take weeks. They could be in the hospital for a long time. Their families could be helping them, their families could be very worried. And so by implementing this three-month retroactive period in the Medicaid statute, it was intended to make sure that people can focus on their health while getting all the documentation, the proof of assets, residency, income, et cetera, and not have to worry about not getting coverage, and then providers not having to worry about not getting reimbursed for the services they provide. So this is especially problematic for older adults. And then there’s a lot of rules that are being effectively eliminated under this bill. One big one that we’ve really been working hard on is the nursing home minimum staffing role.
We’ll discuss that more later. But effectively, it requires nursing homes to have a minimum number of staff, including a 24/7 RN in nursing homes. And studies have shown that this rule would save 13,000 lives annually because so many people end up dying or getting very ill because of understaffing. So it’s really concerning that this rule might be rescinded under the bill. And then there’s the Medicaid eligibility and enrollment rules. These are a pair of rules that were finalized a couple years ago that streamline the verification process for all Medicaid enrollees to prevent wrongful terminations for things like the late paperwork, like we discussed earlier, or any other clerical or technical issue.
The rule would’ve made sure that people don’t lose coverage over something minor like that or that they get it back very quickly, without delays in their care. There was also another part of the rule that was specific to Medicare and Medicaid dual eligibles that made getting their Medicare Savings Programs much more easily to provide that financial assistance to pay for Medicare out-of-pocket costs and premiums. And so those protections will also be effectively eliminated under this rule. Just for clarification, the bill does say that the implementation of rules will be delayed by 10 years because that is the budgetary window that, under the budget reconciliation rules, that’s what they look at. But in effect, it is considered eliminating the rule. Or the rules, rather.
And then the bill also restricts state’s Medicaid funding mechanisms. So one is that the states will be penalized for using their own funds, their own state dollars, to provide care to certain immigrant populations. And just as a clarification, immigrant population doesn’t just mean undocumented. Federal rules for immigrant coverage, immigration coverage of Medicaid is very, very complicated. There are many categories of documented immigrants who are barred from Medicaid, and it’s very confusing and it can lead to a lot of uncompensated care. And so for that reason, states have decided that it’s worth it for them, and better for their own state, to use their state dollars to provide healthcare for those groups. So this is not using any federal funds. But under this bill, states would be penalized if they use their own money to provide care for those populations. And not only does this increase the use of the emergency room, it will also likely create a greater chilling effect on immigrant communities, including those that are entitled to Medicaid under the federal rules.
Because it’s so complicated, because it’s such a strong anti-immigration stance, we’ve seen in other instances where things like this prevent people who are eligible from applying. And then states can also use provider taxes to meet their portion of their Medicaid funds. So all states have to cover up to 50% of their own funds for Medicaid and then the federal government covers the rest, between 50 to 70 odd percent of the Medicaid expenses. And so provider taxes are usually used to meet that state’s obligation. By limiting those provider taxes, states will be forced to cut optional services, like home and community-based services as well as expanded eligibility for certain program. Some states have increased eligibility categories for certain programs like eligibility for Medicare programs for older adults or for people with disabilities. They might have a higher income threshold, but that higher threshold is optional.
And if states have to meet their budgets and they’re not getting as much money from the feds, then that’s one place where they’re going to cut. So limiting the state’s ability to use provider taxes has huge implications on older adults, and it’s likely to worsen their direct care workforce shortage if they have to cut payment rates, which is very, very likely if, again, they can’t utilize this mechanism to meet their obligations. And then just one thing to remember about reconciliation is that it is a long ongoing process. The key message for advocates is that all of these changes and reforms, they’re just flat out cuts. The goal of this entire process is to cut Medicaid to pay for other priorities, like tax cuts. These costs will be pushed to the states. When the federal government isn’t paying for it, states will have to pay for it. And to fill that gap, states will be cutting benefits or services or eligibility.
And then just Medicaid is already very, very, very lean and cost-efficient. It is not a program of plenty. It is a payer of last resort. It is already a very lean program, so there’s no way to make cuts without hurting the core of Medicaid itself. And it’s impossible to cut hundreds of billions of dollars without taking away healthcare from older adults or people using long-term services and supports because, again, so many older adults are using Medicaid, and so many Medicaid dollars are going towards services that people with disabilities and older adults rely on. And it’s very important throughout this process to call representatives early and often to express concern. So right now, we’re in the Senate and we’re encouraging folks to call the Senate. If it goes back to the House, keep making those calls because it does make a difference.
And then it’s really important to continue advocating at a state level. We’re only a few months into this administration and this Congress, but over the next several years, state governments could be doing things that could hurt Medicaid as well. And so one way is by implementing waivers, submitting waivers that might cut Medicaid, that might incorporate some harmful provisions in there that make it harder for people to get services. Or maybe the opposite, maybe they do things at a state level that makes it easier to get Medicaid and get more people coverage. So it’s really important that, if you have relationships with your state or local Medicaid office, to continue working with them and making sure that Medicaid is working for your state in whatever way the state has the authority to do so.
And then another thing that we’re also monitoring is some potential changes to the notice and comment process for rulemaking, which is something we utilize quite a bit under the Administrative Procedure Act, which is the statute that gives us authority over what the rulemaking process is for publishing and finalizing regulations. And under the APA, notice and comment opportunities are required for rulemaking but exclude certain matters relating to “public property, loans, grants, benefits or contracts.” However, since the early ’70s, the Department of Health and Human Services has honored the policy to follow the notice comments even in those categories that were exempt, like benefits, grants, contracts, et cetera. And that’s how we’re able to submit comments and provide expertise as advocates or even as individuals using these benefits, to help inform the administration why certain rules or certain processes might be good or harmful for a population.
And so on March 3rd, the HHS secretary published its recension of the Richardson Waiver, which is the waiver that said HHS will still provide notice and comment for these categories, even though we’re not required to. And it’s unclear which rules will be impacted or how will this go into effect in practice, but it is something that we are monitoring on a case-by-case basis, and it’s really important to note that there are still basic due process protections in place despite the recension of the Richardson Waiver. That’s just something really important to note. That’s a fairly recent development, but something we’ll be watching over the next several months and years.
Now we’re going to discuss their nursing facility standards and some corresponding litigation, before I turn it to Eric. Some basics about the staffing standards. It was announced in May 2024, after extensive comments and engagement from individuals, from providers, from advocates, from family members, and then also based on a very large study that was commissioned to show how much care is necessary, at a minimum, to protect residents. It required a registered nurse 24/7, and then at least 3.48 hours of direct care per resident per day. That’s divided up to say that at least 2.5 hours of certified nurse aid care and .55 hours of registered nurse per resident per day. Then the remaining amount can be provided by either an LPN, RN or a CNA.
Now, one thing to note is this was not going to be an immediate role. It had a phase-in implementation for folks, for providers in certain communities, for example, if they were in a more rural community. And so the phase-in was going to start in May 2026, but continue for three years, in order to allow all those regions and all those providers to become compliant with the rule. I’ll also quickly say that there are several exemptions in the rule, if providers can’t meet it with good faith. If they are attempting to hire staff and retain staff, providing fair wages, and despite all that, they still can’t meet the rule, then they do have an option to submit for a waiver and show that hey, they really did try.
So it’s really a compromise role to benefit nursing home residents, but while still recognizing some of the challenges that providers might have. Now, despite all those exemptions and the delayed implementation and everything, there were still lawsuits brought in by providers, two in particular in the federal court system. One was in Texas, and it was brought by the American Health Care Association and the state of Texas. And then there was one brought in Iowa by the group LeadingAge and their chapters, as well as other GOP-led states to try to stop the rule from being implemented. And so the Iowa case is still pending. The Texas case was initially, the ruling in Texas was initially invalidated, stating that the staffing standards were inconsistent with the nursing home reform laws requirements, which was only eight hours of RN care. And then instead of specific hours per resident per day, the initial law only required staffing based on “residents needs.”
So it was very, very broad in what it had initially required. And so despite that ruling, the federal government did appeal the case just a couple days ago to the federal appellate court, and it’s likely that was done because they want to keep the case alive for purposes of budget reconciliation because if the case wasn’t, then that would mean that they wouldn’t be able to use the savings from repealing the rule for their budget reconciliation purposes. And so with that, I will hand it over to Eric if he wants to add anything or continue discussing some more great Medicaid things.
Eric Carlson: Thanks, Gelila. We can move on and talk about the survey timeliness. The first thing to discuss is based on a case that Justice In Aging is involved in. First, a quick background. Federal law requires that facilities be surveyed, on average, annually and at least no more than 15 months apart. But we observed, along with some partners, that the state of Maryland was far out of compliance over a 16-month period, but it should have been 100% compliance within 16 months under the regulation that I just discussed. But instead, only 44 of the state’s 225 nursing facilities had been surveyed during that time. And we and others filed a class-action lawsuit under the Americans with Disabilities Act. Under the ADA, the argument is that the licensing and certification agency of the state of Maryland was following “methods of administration,” term of art under the ADA that had a disparate impact that especially affected residents with mobility impairments.
They were particularly affected and you can understand why by the fact that they essentially didn’t have the surveying protections that they were entitled to under the federal law. And for obvious reasons, quality of care is particularly important to these folks. The case has been going through some of the initial stages and just within the last six weeks or so, the court made some initial rulings that were favorable to the plaintiff’s and the plaintiff class by rejecting a motion to dismiss that the state had made. The state had said that there wasn’t a claim here, and the court disagreed, saying that the complaint had alleged harms that people could suffer from poor nursing facility care due to the lack of timely surveying, and that risk would be particularly problematic to the class with mobility impairments. And then also the court ruled that this was appropriate for a class action because all these class members, all these residents with identified mobility impairments, faced the same type of problem.
It was fair that they’d be considered in a class because, for the purposes of this lawsuit, they face the same type of problems, and those problems could be remedied by a positive decision ultimately by the federal court. So it’s promising and it raises the importance of timely surveying and the reality that oftentimes, states are out of compliance with those timeliness requirements. And on the topic, I’ll take a quick mention of some recent federal budgetary action that relates to this. A couple of days ago, the Health and Human Services, which includes the CMS, Centers for Medicare and Medicaid Services, released a proposed budget. And there’s some potential good news here, that after flat funding for years and years and years, the federal government was proposing an 11% increase in the surveying budget, as it’d be an increase of $45 million. Again, to emphasize, this is just proposed at this point.
There’s some back and forth here. The administration makes a proposal. It’s ultimately in the hands of Congress, but the initial proposal from CMS was for this 11% increase. It is noteworthy that the discussion around those budget documents emphasized complaint investigations over the annual surveys. So these budget calculations were premised on an increase in annual complaint investigations, again, about 11% increase from 77,000 to 86,000, but also was also premised on a lesser compliance with the timeliness requirements for the annual surveys that CMS was estimating that, under their proposal, even with this increase, that the timeliness of surveys would decrease from about three-quarters of the facilities to instead 65% of the facilities. So there’s a plus and minus there, and you can have some discussion about the relative importance of complaint investigations versus surveying. Or you can say, of course, it’d be important that all of them be done timely.
They shouldn’t be forced to be pitted against each other, but that, at least, is the initial budget proposal from CMS. While we’re talking about the budget and speaking to this audience, I’ll mention also that the same proposed budget documents kept the proposed funding for the Long-Term Care Ombudsman Program from the federal government relatively steady, maybe a slight tick upwards to $22 million. So that is a promising sign. It obviously could have been a lot worse. It still includes the elimination of the administration for community living and the budget document instead proposes to transfer all of these programs that were initially at ACL to the Administration for Community and Families or a renamed agency, Administration for Children, Families and Communities. So again, proposed budget, but there’s some roughly positive information on that front within the last few days, which moves us to some discussion, maybe away from DC here, away the away from Congress, away the federal level, to a certain extent, and more of a focus on individual advocacy.
Now we’re going to be talking about representing individual clients in nursing facilities and how that might be aided by some recent change in the Surveyor’s Guidelines. We discussed this in the webinar within the last six months from now. We’re representing it now because these requirements just became effective in late April. The Surveyor’s Guidelines, as the name suggests, provides guidelines. It’s guidelines to the interpretation and implementation of the federal nursing facility regulations. Usually here, this is where I would say, I guess I’ll say it here quickly. Usually you would find these in Appendix PP to the CMS State Operations Manual online. Just a warning here, if you do that, what you’ll find is an old, outdated copy of the Surveyor’s Guidelines. And if you want the copy that includes these recent changes, instead you want to go to that CMS survey director’s letter that’s listed on the screen.
That survey director’s letter is, I don’t know, four, five, six, seven, eight pages long, but then attached to it is the 700 plus pages of the Surveyor’s Guidelines. It’s got a watermark on it that lists it as an advanced notice copy, but that is the copy that’s now in effect. I’m going to look on a couple issues raised by these changes in the Surveyor’s Guidelines, dealing with contracts and then also administration of medication. First, the contract-related issue. Under the federal law, there are no financial guarantees allowed in nursing facilities. It can’t have a family member, son, daughter, or friend, neighbor, whomever to become financially responsible for the nursing facility bill. You can have, under the federal law, someone act as an agent. And of course that happens all the time because nursing facility residents, due to physical or mental disability, dementia may not be capable of participating in the contracting process.
Somebody can act, a conservator, a guardian, an agent under a power of attorney, can act to sign documents, but in doing so, they’re just binding the resident. They’re not committing their own money to pay for the nursing facility charges. That’s how it should work, but there are a significant number of nursing facilities that are still looking for ways to collect against family members and friends. Oftentimes, you’ll see these admission agreements that … go through some detail about what the “responsible party” is obligated to do to pay the resident’s bill, to seek Medicaid eligibility when that’s appropriate. And then if there’s any money due at the end of the day, then, and you see these in the published cases, the facilities try to collect against this third party, the family member or friend, saying that they failed in their duty. And in response to this, the law that I just discussed a minute or two ago, the facility would say, “Well, these aren’t guarantees. These people aren’t guaranteeing the bill. They’ve got this separate obligation and we’re suing them against the separate obligation.”
Generally, those cases should fail. In full disclosure, sometimes they succeed. Oftentimes they succeed when the third party has acted inappropriately, looted the resident’s account, for example. But the main message here is that it should at least be resisted. There are some decisions going both ways. Oftentimes, the third party loses here because they aren’t represented or aren’t represented well in the presentation of the appropriate legal arguments. In the presentation of those arguments, they have now additional support from the Surveyor’s Guideline, which is really useful. This is the new language, as you’ll see in the Surveyor’s Guideline, saying that the admission agreement language can be non-compliant even if it does not specifically reference a guarantee. Any language contained that seeks to hold a third party personally responsible can violate this requirement. Really useful and it particularly addresses that facility argument that I mentioned a minute ago.
The facility would say, “Well, these aren’t guarantees.” And the Surveyor’s Guideline says in response, “Doesn’t matter. That your attempt to collect against these third parties is in violation, even if it’s not explicitly a guarantee.” Then the Surveyor’s Guideline helpfully provides some examples here, language that holds the resident and the representative jointly and separately liable. That could be violative language. And this addresses that example that I just mentioned a minute or two ago, language that holds the representative personally liable for failing to apply for Medicaid in a timely manner, or also a third example of non-compliant language that shouldn’t be enforceable if it purports to hold a resident liable for not providing accurate financial information or notify the facility of changes in the resident’s financial information. So in all these situations, the big picture message is that facilities shouldn’t be able to skate around the no guarantee rule by coming up with these various arguments that the agent has failed in one way or another. Now, the resident should be liable. The resident’s money should be online because the resident has received the care, but the agent is not financially responsible.
One of the other interesting, important from an advocacy perspective changes in the Surveyor’s Guideline is the information relating to informed consent of medication. The general rule in state law is that you have to have informed consent. No one can just walk into this room right now and administer medication to me. There has to be an explanation to me as to what is this medication, what are the pros, what are the cons? And then I can decide whether I want it or not. Oftentimes, that’s been ignored on a practical basis in the nursing facilities. There’s just this sense, oftentimes, that these are the sort of things that the doctor decides. There’s a doctor’s order for ex-medication and it’s administered, and the family of the resident says, “What’s going on here?” And the facility says, “Well, it’s in the doctor’s order.” That is inappropriate. And the Surveyor’s Guideline, here for the first time, describes that in some detail, which is in a really helpful way.
The Surveyor’s Guideline language saying that the resident has a right to accept or decline. Absolutely right. And the medical record must include documentation that the resident was informed, just like I said about informed consent, of the proposed meds, the alternatives, other options, the pros and cons, and then there should be some documentation. Ideally, it would be in writing, as described here, but the Surveyor’s Guideline says some other types of documentation might also be acceptable. And if you don’t have such documentation, non-compliance exists. There’s a violation of the regulations. So just from an advocacy perspective, it’s really helpful. If you’re in that position, you need to say to the facility, “We don’t consent.” If you don’t have consent here, you can’t administer this medication. If you want to propose administering it, give us the information, the pros and the cons, there’ll be a decision made. But if you’re administering something without that documentation, without approval, it’s inappropriate and you’ve got to stop it until you go through the proper procedures.
There’s also some related matter. This isn’t informed consent, but speaks more to the appropriateness of psychotropic medications. The informed consent laws that I talked about apply to all meds, including but not limited to psychotropics. And then this provision specific to psychotropic says that non-pharmacological approaches have to be attempted, generally, that you have to try those options first. And just note here that at the tail end of the Surveyor’s Guidelines, the citations I’ve listed earlier are the F-tags and specifically discuss the interpretations of particular subsections of the regulations. But at the very end of the document, back on page 750, 800 or whatnot, there is a discussion. There’s these pathways, these flow charts, essentially, for surveyors that indicate when there’s a violation. And those could be really useful to indicate violations. Here, for example, does the record show that the resident was informed of the risk and benefits of a medication?
If no, there’s a violation and the surveyors instructed to cite F-tag 552. Same thing regarding the non-pharmacological alternatives. As to psychotropics, the question presented in the critical element pathway is did the facility ensure that alternative treatments, such as behavioral interventions, were attempted? And there’s some other questions there as well that I haven’t included, due to the space limitations. But if any of the answers to those are no, if there wasn’t an indication of non-pharmacological interventions, again, there’s a violation and the surveyor’s instructed to cite F-tag 605, relating to medication as a violation.
And then the final Surveyor’s Guideline provision that I’ll cite here, it relates to transfer and discharge from a nursing facility. There has to be, under the regulations cited here, sufficient preparation orientation to residents to ensure safe and orderly discharge. And the helpful information here is this description of an unsafe manner because you get these arguments, issues about what’s appropriate, and you see proposed discharges to a resident’s family member’s house … a single room occupancy hotel, a homeless shelter, these sort of things. And the language that you would cite in opposition to those type of proposed transfers would be that it doesn’t meet the resident’s need, doesn’t provide needed support or resources or does not meet the reference’s preferences and therefore should not have occurred.
The bad news is there’s not a checklist of the locations that may automatically be inappropriate, but maybe that’s a good thing as well. Instead, there’s this broader language that can be used in all these circumstances to argue why it is inappropriate for a resident just to be casually, without adequate preparation and without adequate consideration of the resident’s needs and preferences, be sent to some place. And that’s all in the survey’s guidelines at the F-tag listed there. Then in wrapping up this session, we’re going to shift a little bit. We’ve just spent those X number of minutes talking about individual resident advocacy. We’ll close about talking about state level advocacy related to implementation of a federal regulation. This relates to home and community-based services that, just mentioned this briefly, because the deadline is upon us. It’s part of the Access rule, the federal government has required states to prepare these advisory committees, a Beneficiary Advisory Committee and a Medicaid Advisory Committee.
The Beneficiary Advisory Committees, as the name suggests, are comprised of people who are Medicaid enrollees or former enrollees or people with experience supporting the same. And then the Medicaid Advisory Committees include folks who would be on the Beneficiary Advisory Committee, but also other people involved in the aging, Medicaid network, advocacy, nonprofits, providers, managed care organizations, et cetera. And that is effective just about a month from now. So maybe the work’s already been done. If it hasn’t been done, you can imagine particularly the uncertainty that’s going on in state and federal government right now. There may still be some advocacy that needs to be done to make sure that those are effective because if done well, that is an important avenue for residents and resident advocates to get their points across and to advocate for a more responsive Medicaid program within the state.
And then conclude with a discussion of another provision of the Access rule, a requirement that states must meet that has a deadline … a year from now, a year plus. So there’s still some, this is the time to work on this. The Access rule requires that there be a grievance system pertaining to home, community-based services, which allows a beneficiary, a Medicaid enrollee, to file a grievance against either the state or a provider. And under the Access rule, this grievance relates to a violation of a particular federal home and community-based services regulation, either related to person-centered planning or the home and community-based settings rule, which requires, for example, it essentially sets standards for providers, enrollees, in HCBS settings to be in non-institutional environments. So they have access to the community, for example, or even in communal residence, like assisted living facilities, doors that aren’t locked, access to food at any time. Again, access to the community, access to visitors, et cetera.
Under the regulation, it has to allow for the grievance to be filed either orally, in writing, where the state acknowledges receipt, there’s an independent decision-maker, there’s a reasonable opportunity for the enrollee to submit evidence and testimony and language services to support the use of the grievance system. The beneficiary has to be able to file a grievance at any time, and then there has to be some kind of timelines for responding to grievances with an outside limit of 90 days. Obviously could be and should be much shorter than that, but with an outside limit of 90 days.
In the resolution of the grievance, the state has to establish a method to notify the beneficiary of the resolution. In the state, there has to be some support for folks with limited English proficiency and folks with disabilities, and then additional requirements that the state has to comply with, that enrollees have reasonable assistance in getting the grievances filed, there’d be proper notification, and that there would be an ability to “review” the resolution of the grievance when the enrollee is dissatisfied with that initial resolution. And this, as I mentioned, is scheduled to be completed by the states roughly a year, 13 months from right now.
So these are some quick points on implementation. 90 days is too long. I can’t emphasize this enough. That’s an outside limit. And in working with the states, the argument needs to be that it has to be meaningful. Because you can imagine, if you aren’t getting services and you file a grievance, you aren’t getting adequate services and you file a grievance and you get a resolution three months from now, just not meaningful at that point. So it has to be a system that’s able to respond timely to grievances that require timely responses.
You also need to be sure that it can address quality of care issues. The language that I mentioned of the issues that can be addressed, it’s focusing on the HCBS Settings Rule, is more convoluted than you wish it would be, but you need to make sure that when the beneficiary of this process is designed in the state, that it can address questions like not getting care timely or getting care inappropriately in assisted living and group home settings or poor quality of care and issues with medications or quasi-health care that’s oftentimes needed and to be provided in some of these settings. That the system should be able to address questions that raise issues like that and then also make sure that the resolution is meaningful.
Things have to be fixed. There has to be a mechanism that identifies the problem, and then makes sure that there’s enough of a stick, enough of a compliance system that makes sure that the problem is addressed. It’s not enough to have a piece of paper that says that the enrollee has won if there’s not a mechanism to make sure that compliance will result. And then other issues as well, that this process be visible, that there’d be outreach, that it’d be accessible, so it’s really meaningful. There is a … risk here. I think that my sense is that this flies a little bit under the radar and even the terminology of grievance maybe suggests that these are complaints that can be, maybe I’m reading too much, I would’ve wanted a different language.
I think it’s appropriate to just think of this as broadly as possible, saying that you need a complaint system. You need a system that’s going to be able to address complaints, and potentially really serious complaints, dealing with quality of care problems, and make sure that it’s fixed. And if the problem is with the provider, which it often is in these situations, it could be against the state or the provider, but particularly if the problem with is with the provider, there needs to be a process to create a quick decision and with enough force to make sure that the provider is influenced into really fixing the problem, so the resident has appropriate care going, the resident, the enrollee, the recipient of the home, community-based services has adequate care going forward.
We’ve listed some resources here. These sources here are largely focused on some of the material that Gelila talked at the front end of the program, about the legislative reconciliation process that’s going on right now. And then we’ve also cited, regarding nursing facility work, our guide to day-to-day nursing facility advocacy, 25 common nursing home problems and how to resolve them, which is available online for free. And with that, we’ll quickly address a few questions and then close the session. [inaudible 00:57:40]-
Gelila Selassie: Yeah, so we have-
Eric Carlson: Issues do we have? Go ahead, Gelila, I’m sorry.
Gelila Selassie: Oh, I’m sorry. Yeah, we have a couple of questions. One is an easy one, I can just answer. The initial slide showing the 10 million people with disabilities on Medicaid and 7 million seniors, those are national numbers. Someone asked if those were state. And then Kaiser Family Foundation and others also have a ton of information, breaking down the Medicaid population. One question for you, Eric, is if the proposed survey guidelines also pertain to ICFs or just nursing facilities?
Eric Carlson: So first of all, there’s nothing proposed about them. The survey guidelines are final. They don’t pertain to ICFs. These are solely related to nursing facilities.
Gelila Selassie: Great. And then another question going back to the budget bill, was when will it be implemented? And the timeline for that answer varies widely, depending on the provisions. Some things like the Medicaid work requirements go into effect like December 31, 2026. Others are a little bit later. Some other aspects might be a bit sooner. It’s hard to tell. Most of the bigger provisions will take at least a year or two to go into effect. And then I guess our last question was in terms of rights, where do residents and their families go if they’re worried that they are being abused or harmed by the facilities? Who can they contact for help?
Eric Carlson: I mean, on the nursing facility side, we’re talking about the Long-Term Care Ombudsman Program and the licensing and certification agency of the state. You get some advocacy assistance from the ombudsman and you have the ability to file complaints with the state licensing certification, and they have the power to do investigations and potentially find deficiencies and impose penalties.
Gelila Selassie: Great. Thank you. I think that’s it. We are the top of the hour, so I really appreciate everyone’s participation. Thank you, Eric. Thanks to our wonderful interpreters. Please feel free to reach out to us if you have any questions, and please join our network for alerts on future webinars and materials. With that, we can close the webinar. Thank you.Paste Transcript Here
