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Hello, everyone, Thank you for joining today’s briefing, Recent Trends and Policymaking impacting Medicare and Medicaid Home and community based Services.
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I’m Christopher Holt, Vice President of Policy and Federal Affairs here at The Alliance for Health Policy. For those of you who are not familiar with the Alliance, let me welcome you. We are a non partisan resource for the policy community, dedicated to advancing knowledge and understanding of health policy issues.
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Today’s briefing is brought to you by the generous support of the Scan Foundation.
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The scan Foundation is an independent, public foundation, transforming care so that every older adult has a set of choices and the opportunity to age well at home and in unity.
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The foundation emphasizes priority populations that are older people of color, older adults with lower incomes and older residents of geographically underserved communities. We also take this moment to ask you to follow the Alliance for Health Policy on LinkedIn, to stay informed about upcoming events like this one.
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Today’s panel has a Q and A section at the end, and we want you all to be able to be active participants. So please have your questions ready.
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You should see a dashboard on the right of your web browser that has a speech bubble icon with a question mark.
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You can use that icon to submit questions that you have for the panelists at any time, and we’ll be collecting those throughout the broadcast. We will do everything we can to address as many of them as possible during the projects.
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Throughout the webinar, you can also chat about any technical issues that you may be experiencing and we will do our best to help you with those.
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Now, I’m very pleased to introduce to you our Taylor slogans from Internet Post Assaulting.
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Taylor is a skilled passionate health policy professional with experience covering legislation, research, complex policy and data analysis and strategic planning.
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Prior to joining Return It K listserv at macro, providing information, evaluations and recommendations on the Medicaid and Children’s health insurance programs for members of Congress, executive branch decision makers, and state level leaders, Kayla led backpacks work analyzing racial and ethnic health disparities among Medicaid beneficiaries. And it was integral on authoring the organizations public statement, committing to combat institutional racism, and address racial disparities in health care and health outcomes. So with that, I’ll pass the baton to Kayla.
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Thank you so much, Chris. And thank you to the Alliance for having me. I’m very excited to be here and delighted to be moderating today’s discussion, so I will jump right in introducing today’s panelists.
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First, we have Amy Bassano.
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Amy is a senior executive and nationally recognized health policy expert with more than 20 years of experience developing organizational vision and strategic plans, designing and implementing payment systems and driving change in the healthcare delivery system.
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Amy joined AMA as Managing Director of Medicare Services, after serving as the Deputy Director for the Center for Medicare and Medicaid Innovation, or CMMI within CMS.
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As senior executive at CMMI, she oversaw the development and implementation of value based purchasing models for both Medicare and Medicaid, including accountable care organizations, bundled payment programs and specialty initiatives in oncology, kidney care, prescription drugs, state based models and dual eligibles.
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Additionally, she collaborated with states, health plans, purchasers, and international organizations to lead the national and international movement to value in health care.
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Next, we’ll hear from Kate Macavoy, Kate became Executive Director of the National Association of Medicaid Directors in January of this year.
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And AMD is a professional community of State leaders who provide health insurance to more than 80 million individuals and families through Medicaid and the Children’s Health Insurance Program in each of the 50 States and DC.
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And the US territories NMD elevates thought leadership on core and emerging policy matters amplifies the experience and expertise of Medicaid and chip directors supports state programs in continuous improvement and innovation and optimizes federal state partnerships to help millions live their healthiest lives.
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Previously, Kate led the millbank memorial funds work in support of State, executive branch staff and policymakers as well as its policy initiatives on healthy aging.
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Prior to joining Milbanke, she was the longtime Director of Health Services for Connecticut’s Department of Social Services.
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During this time she also served as President and Vice President of an AMD’s board of directors, So a full circle moment.
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After that, we will hear from Naomi Williams who will speak to us from her lived experiences as a caretaker of her son, Noah.
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Naomi, describes herself as a perfectly imperfect person on a mission to empower individuals and families live their best life.
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Now, I love that as a life dula, she helps people navigate and process major life altering events.
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Naomi believes anyone and, and, and everyone can and should lead an exceptional life.
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Naomi uses her experiences as a Gref coach and yoga instructor to inform her work as an advocate and systems navigator.
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When not advocating for her family or others, you can find Naomi getting lost, exploring nature or taking a deep breath on her yoga mat.
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We’re in for a great discussion. Feel free to grab your lunch or your work appropriate beverage and get ready to participate in the discussion at the end. And with that, I will hand it over to Amy.
6:19
Well, thank you for that introduction. Look for this discussion here with this amazing panel. So, and thank you to the Alliance for inviting me to talk a little bit about Medicare coverage of services in the home.
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We go to the next slide, or maybe a couple forward.
6:36
The next one, so Medicare, as there was in the home, is relatively limited, although definitely an area of growth and excitement thinking forward, but for, as with most things, in Medicare, the benefits are limited, and they are prescribed by the statutory and regulatory requirements of the particular benefits. And so historically, there have not been many services available in the home. We’ll talk about what they are specifically in a moment. But post Public Health Emergency Post coven there, is growing recognition. Of the importance of providing care in the home. And more flexibility to Medicare beneficiaries about how they get their hair, and what services they may be needing historically. Or, at least over the past few years, the Innovation Center Waiver Authority was sort of the best opportunity to provide additional services in the home, where there’s flexibility in those innovations, and your models to change, to waive. Some of the requirements of sight of service. And so, they had tested some models there.
7:47
And then the other factor to think about is the growth in Medicare Advantage, which we’ll also talk about in a moment. But that’s changing the landscape for services in the home. As more, you know, more than 50% of Medicare beneficiaries now have these plans. And what the of the services, they may be off able to offer through that.
8:05
And so, with the next slide, please, can go into a few minutes of the specifics of some of the benefits, and feel like in the limited time, we will just touch on some of the high level issues here.
8:19
But happy to go deeper in, People have questions.
8:22
And so, the home health care benefit is, sort of the, what people think of with Medicare home services. It’s home health care. It is only available to beneficiaries who have certain meet certain requirements. The most notable is this homebound requirement, meaning that they’re not able to leave their home on a regular basis that they are, you know, in a hospital bed, in a wheelchair. And, you know, there’s lots of requirements around what that means to be homebound, but generally are not leaving their home and that they need some level of skilled care. So generally, patients will get these services after a hospital stay after an accident or after something that’s really changing there.
9:07
There are circumstances. There are folks who get it on a longer term basis.
9:10
But the amount of services has to be part time or intermittent basis. So these are not full-time, round the clock. Nursing care, that is something that Medicare does not pay for, and you may hear a little bit more about what’s available through Medicaid and so beneficiaries are duly eligible. They may get other services through that. But, for Medicare purposes, you’re homebound. You need skilled care.
9:36
Your doctor must certify specifically what you need, whether that skilled nursing care. So, that is, you know, not just care for your activities of daily living. It’s something, you know, something more medical in nature. It could be physical therapy, can be speech language, services, occupational therapy, there are certain home health aids services that come along with the benefit. Certain medical social services. It’s all really integral to the medical care and some medical supplies as well that come through this particular benefit. The Medicare pays them in 30 day increments.
10:11
And so there’s a prospective payment system that establishes the payment rates for these services based upon the patient’s need and a number of other factors.
10:20
And you must get the services through the Medicare certified home health agency.
10:26
There are A number of issues with the home care, home health benefit that has happened over the years, the growth, and the benefit, the growth in the number of home health agencies. There have been program integrity issues there.
10:42
There have been some other concerns about how growth, how it’s grown, but, you know, use of these services and, and certainly, the homebound requirement is controversial and has been lots of discussion and regulation and litigation around what that means.
10:59
And we’ll talk about it more in a moment.
11:02
But that’s that is CMMI currently has a model where they are waiving that to allow more for flexibility for the, um, do allow get more access to home health care services. So, next slide, please.
11:16
And so, a number of other areas where you can get services in the home is what I alluded to earlier about sort of a little bit very specific depending upon the statutory benefits. So, telehealth, which we’ve heard so much about over the past few years, the patient’s home can now be an originating site and through law for 2024. So meaning a patient can receive telehealth services, conduct their position, other providers, if they’re in their home to get telehealth services. But historically, before the public health emergency, the patient could not use telehealth in their home and they would have to be in a rural area. Anyway, this, you know, they could be located anywhere, so there is more access for those services. A lot also allows for home infusion therapy services is through the durable medical benefits. So if you need infusion of certain types of products, you can get that at home.
12:11
Physician visits can be provided in the home, but not any types of nursing services. So, this means that the incident to requirement, but that means the physician themselves, him or herself, can come to your home. And provide you, with a visit of the services you may need.
12:32
That is, there are a number of practices, specifically designed across the country. to deliver home services, but, in general, that’s not something that physician offices are generally doing these days.
12:44
And those who do, do, were designed to do home visits are generally focusing on the sicker patients, and that actually leads to the independent home demonstration, which is a statutory program, or demonstration, that’s been extended, A, number of times, it was a lot encouraging, or incentivizing services at home for those practices, designed around, delivering the care at home.
13:09
I think there’s only 1, 1 practice left in that, in that demonstration, but there have been higher numbers historically, and some of them have moved on into some of the other CMMI models. And just to go back to the fee for service benefits, hospice services also are generally provided in a Medicare beneficiaries home.
13:29
If you have that, there are some institutional settings for hospice But generally that is a home based service As I said, CMMI models they have flexibilities built into them that allow for Some additional services to be at home, and so I mentioned the homebound requirement. There’s the, what they call, a post discharge waiver, which allows additional types of physician services, an incident to. So Meaning, whether it be a nursing service, or other.
14:01
something that a physician to be getting a physician office, to, to deliver the care without the physician, Having to be in the, in the patient’s home, with the, with the nurse, or the other providers, to provide those services. And so I think that’s an area that could be built out further to provide more home services.
14:21
But also as with many CUI models or their authority, could educate and inform future thoughts about additional benefits.
14:31
Then Medicare Advantage, the, they must offer all fee for service benefits. So all the benefits, I discussed, except for anything xuemei related, they must offer as part of their benefit package, but they also can offer supplemental benefits.
14:47
And that is additional services you may hear about gym memberships. Hearing aids, eyeglasses, dental services, but one of the most popular and fastest growing, supplemental benefit through Medicare Advantage of these home support services that the plans can offer to provide additional services, medical, or custodial in the home.
15:13
And you’ll also see Medicare Advantage Plans investing a lot in this bill, through the, the, the supplemental benefits, but also through their acquisitions of providers who do this, to help co-ordinate the care.
15:27
And, know, as I said earlier, there’s sort of care generally is not co-ordinated in the home, because there are these specific benefits, but in Medicare Advantage, you can have more flexibility and more co-ordination of those types of services.
15:42
So, next slide, please.
15:46
And so, I want to mention the acute hospital care at home, because this has gotten the most amount of attention recently coming out of the public health emergency, where it’s really a lot of excitement and enthusiasm around additional care in the home.
16:03
And so, this was designed to, as is called, you know, named hospital care at home.
16:09
So, you are, could be eligible for an inpatient admission, but you, as the patient and your caregivers and the hospital decide that you could be appropriate, could be appropriate for you to have all these services in your home.
16:24
And the hospital provides the nursing services, the equipment, the, any, you know, the medications, anything you may need in your home.
16:34
And so, there, there have been some earlier tests of this, or a couple of hospitals who’ve been doing this for quite awhile. CMS was, this was not one of the very first waivers. It took them awhile to just create this program is not a blanket.
16:50
Waiver hospitals currently have to applied to it. And along with Telehealth, this is one of the provisions that was extended by law through 2024. Because there is a lot of excitement and hope for this to be successful. The key issue is the waiver of a hospital conditions of participation, anemia like, what a hospital needs to do to be considered a hospital.
17:11
And that’s waving the nursing services that are on premises, 24, 7. And the immediate availability of registered nurse for take care of a patient, that was a major source quality component that CMS had to grapple with when they were thinking about, could they make this program work. And so, they have, they set up the program, they waived that provision.
17:32
There are a lot of other quality checks in terms, in place to ensure that the patients who are in these programs are receiving high quality care.
17:43
Couple of things to note about this.
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Medicare continues to pay the full inpatient payment for the services, even if they’re being paid in the home, the question of, like, how much do these services cost, or what are the resources needed for them, as has not been addressed yet.
17:59
This was, as I said, created as part of the coven emergencies.
18:03
Are There was a sense of, let’s test this out, but there probably will be a need to have a conversation about how much Medicare should be paying for these services.
18:12
Then, as of this end of last week, on their went on CMS’s website, they’ve approved 125 Health Systems, 282 hospitals in, 37 states, in 30 states, to do approved, to participate in this.
18:25
I think the level of utilization varies considerably between hospitals and geographic areas, and one other thing to note, requires a lot of effort on the hospital’s behalf to be able to set this all up and you have the technology infrastructure equipment infrastructure staffing infrastructure to do this.
18:45
And so, many of these hospitals are using a third party to help them get this set up and be able to deliver the care to the patients.
18:54
So, CMS is evaluating where this will be anything Congress will be looking for, information from CMS to see if this is something they should continue on. And then, next slide, please.
19:05
I think this or the last slide in terms of just asking some key questions as, there’s a lot of excitement about services in the home, but, you know, outstanding policy questions is, you know, how much in Medicare pay for these home services? There’s differential or in historically and telehealth services. Currently, there’s not a, they’re paying equivalent.
19:25
I mentioned the a hospital at home. How much should that you know? If you’re getting services in your home, she is that equal to being in a four walls of a hospital that includes payment for other things besides just visit, you know, the keeping the lights on and uncompensated care and Graduate Medical education.
19:45
So that there’s a question of how much UP there who should be providing these services? Should it be physicians or their non physician practitioners who can be doing it? You know, why does this have to be licensed? As I mentioned, with acute care at home, it can be a third party on behalf of a hospital.
20:02
Program integrity. and beneficiary protection is always, should be, it will be front and center. And so, CMS will be carefully thinking about those issues to make sure that there’s no, not overutilization, that there’s access to services.
20:16
And, more importantly, the equitable access, you know, of your home based services. Everyone has a different definition of a home. Everyone lives in a different type of home, and, you know, making sure that you, all but of care, beneficiaries, have access to the same types of services.
20:31
And that, you know, they’re getting the best care For them. And then, the, the role of the caregiver, when you bring things more into the home, caregivers take on a potentially higher level of responsibility. And so, what? You know, what is Medicare, and offloading some of the responsibility onto the caregiver, instead of what’s been done? Historically, providers, you know, how do you measure that? How do you ensure that, that’s, again, back to the equity, for the patient and their family?
20:58
So, a lot of things to be thinking about in terms of next steps for care, for whom, from the, from the Medicare perspective. Medicaid has been, I think, has a more comprehensive set of services and been doing this longer than Medicare. And so, I’m going to turn it over to Kate to go through some of the key issues on the on the Medicaid side. Thank you very much.
21:26
Thank you so much, Amy, and really appreciate not only the technical overview that you do, but really that central premise around the constructive tensions that we feel around private funding for these services, as compared to government funding, and then really a portion, then, as between Medicare and Medicaid. So it was a great premise to begin talking about Medicaid coverage of home and community based services. I will say at the outset, if you asked, you know, an average American, I think their central premise would be that Medicare is the Fulcrum Point for coverage of home and community based services. But in fact, that’s really a misperception. Medicaid is the central crux of funding for folks who receive these services, and I’d like to eliminate a little bit about the breadth of the coverage and also talk about the why and how of it.
22:20
So really starting with the next slide, just want to underscore that home and community based services are a central part of what we think of an aging and disability services as a continuum of supports, a continuum that is a work in progress. But this represents essentially a range of services and supports that spanned from fully independent living for folks in the community, up to very skilled services in a residential setting, for folks who have that level of acuity. So, SPN of services, but also, HCBS reflects two very significant strands of advocacy effort over the last 40 years.
23:01
Recognizing that the starting premise, particularly for services covered by Medicaid, was that people would be served, and their older years are folks who had a need for support, because of disabilities That they would be served in a residential setting. That has evolved very significantly as has the kind of guiding precept of wrapping around folks in a person centered manner to endeavor to honor their values and preferences and really meet their needs on a, on a comprehensive basis. Again, something that we will continue to progress on over time.
23:38
The next slide really illustrates the primacy of Medicaid as a peer for HTTPS, as I began to say. You see the orange bars, illustrated on the left, the degree to which Medicaid is the predominant peer for Skilled Nursing Facility Services, institutional settings, but you can see that is now dwarfed by the spending and incidents of folks who are served in the community setting. Through Medicaid.
24:05
And you’ll see the relative bars on these graph. These bar charts really do illustrate the apportionment of coverage from other public sources, including Medicare, as any confirmed really. That is a small proportion. Significantly, folks are still bearing quite a bit of cost out of pocket, either privately underwriting costs where they do not qualify for Medicaid, or making the Medicare out of pocket obligations that are quite significant. And again, there is, I think, pretty poor literacy in the public around this kind of distribution of, of effort.
24:45
You can also see on this slide, the incidence of the dollar spent, which is very significant.
24:51
We can move to the next slide.
24:55
Medicaid programs have many motivations for covering an extensive array of home and community based services. And I want to point to this as a rare intersection from a policy standpoint where many people’s needs can be met here. I want to first start by saying that alignment of coverage of the services is squarely consistent with values and preferences, particularly as people are going along the continuum of the age spectrum. ERP data continues to support year over year, very, very strong preference, to remain at home, wherever that whatever that means for folks and engaged and connected within our community.
25:43
This is also of inestimable value for family caregivers. I want to qualify that by saying that this is a very big tension in the LTSS continuum. The degree to which unpaid family caregivers are the Fulcrum point of our ability to get people’s needs met. And again, the sort of constructive tensions around how much that should be publicly covered through programs such as Medicaid, kinda remains an issue, but caregivers do need that support, wraparound their efforts to remain healthy and heal themselves, so that they can be the best possible support to their loved one. There are too much more sort of foundational interest for Medicaid programs.
26:31
First, shifting resources and policy focus to the community side is a way of optimizing federal dollars state dollars on the whole, although there is really a complex analysis that’s needed to really describe this very empirically. The HCBS services are on the whole less costly than institutional settings, and there is an opportunity for states here to kind of marshal resources where people want to be served. And also, free up the available dollars, the public dollars for re-investment in other initiatives, like health related social needs that are emerging as really important means of advancing progress in Medicaid, particularly, for folks who lacked stable housing, food security.
27:22
So, again, underwriting the cost of HCBS serves really many folks and is this wonderful opportunity that we really rarely see in policymaking.
27:36
We can move to the next slide.
27:38
To Medicaid, often, is described as having a statutory bias in favor of skilled nursing facility care. Strictly speaking, that remains true, and that’s been the case since its inception. I have to quickly add, whoever, though, that, since it was enacted, Medicaid has authorized mandatory coverage of certain home services, like home health Services. Those services are clinical in nature, they tend to be provided by licensed individuals’ home health aid, services, and nursing services. So they did not really expand to meet the array of needs of a person in the community and the so-called non … of services that can wrap around both home based, such as companion services and community based, such as adult daycare or other community transportation.
28:33
These are important adjuncts that have been added over time. And again, through the efforts, as people who arose as grassroots advocates, Juliane Beckett, an Iowa Mom acting on behalf of her daughter who had significant disabilities was an early example as advocacy unsupportive expansion of Medicaid HCBS options, as were the plaintiffs in the Supreme Court’s decision in Olmstead, which really identified the parity of needs of people with disabilities for Medicaid funded services. So we have a long strand of expansion and development here, but again, that state plan authority tended to focus on that limited array of clinical services.
29:21
You will see in this chart, there are myriad vehicles through which state Medicaid programs can expand that limited array, and they have done. So, perhaps the most commonly known vehicle is an option called a waiver.
29:37
That, essentially, enables states to include coverage of services that are not permitted to be covered on another, otherwise traditional basis. That can take the form of a specific, targeted type of waiver, which is called 1915 C, which can enable a state to serve specific populations, older adults, people with physical disabilities, people with acquired brain injury, or a state can take a more comprehensive, or research oriented approach with what is called an 1115 waiver. There’s different directions taken by states. Again, this is a flexible orientation that the federal government has permitted.
30:21
She really tailor the approach in a locally relevant way. We also see some emerging opportunities over the last 20 years for integration of care and support to folks through managed care vehicles, managed long-term services and supports, and also integration with the Medicare vehicles through which folks are being served, such as the special needs plans. And I think we’re really seeing some momentum over the last couple of years now and really solidifying and deepening those efforts beyond where they have been, which is really around data sharing, to encompass a more comprehensive engagement and integration of services. And you see a lot of attention in Congress, on the needs of duly eligible folks who form a very significant incidents of older adults and people with disabilities who do receive Medicaid services. So, again, an array of options.
31:17
A lot of technical particulars associated with each, but this has enabled the Medicaid program to surge forward and coverage of folks, so that over 50% of folks who require long-term services and supports are now served by one or more of these vehicles.
31:36
We can move to the next slide.
31:39
As Jamie began to discuss, I think there are some challenges that we’re all grappling with as a society, and also from a policy standpoint, as she said, that constructive tension over who bears the cost. And, again, it’s about how much should be borne by private individuals.
31:57
We recognize, obviously, that these services are extremely costly. Even though there is opportunity for cost savings in the community, those services still represent a significant spend for folks out of pocket.
32:12
And don’t have any really viable national models for ensuring oneself. In the way that might be helpful for you long term care insurance to kind of checkered history as the efforts to do that through the private market. That really hasn’t taken root in an affordable and accessible way. Also, tensions as between whether Medicare should be the kind of leading edge of the coverage of these services, or whether that should remain Medicaid. So, that is something that we continue to grapple with.
32:46
Very significantly, we are facing an historically unprecedented challenge in providing enough workforce to meet the needs of the millions of folks across the country who need these services. And, again, a lot of equity matters associated with the women, largely women of color who perform this work. Really finally, emerging attention to the lack of economic security among folks who are providing these personal care services, Lack of retirement savings, opportunities, training. Really, the features of what would make this a viable career path and recognizing that, and really bringing strands of interventions together to address it is really a top priority of all Medicaid programs and many others involved in this field.
33:41
Finally, attention that I think is is also challenging to resolve is that, as I mentioned, states have a range of authority vehicles through which they can cover HCBS services and flexibility about the degree and extent to which they are covering them in many cases and states that is dependent on appropriation of state funds and also enabling legislation.
34:04
So, there is continued considerable variance across states, for instance, with the 1915 C waivers, the extent to which a different populations with different types of disabilities are covered. And constant resource constraints that have yielded in many states situations where people are waitlists it for significant periods of time before they can access services. So, again, that is a piece that deserves a lot of attention ongoing in terms of kind of consistency across states and how we can support consumers and understanding the breadth and limitations of coverage.
34:44
We can move to the next slide.
34:47
So, I do want to say there’s a lot of attention at the present moment in Congress and also at CMS centers for Medicare and Medicaid Services on what we can do to address some of these central challenges in medicaid funded HCBS. And as you are aware, CMS earlier, this spring issue, two major pieces of rulemaking. one is centrally focuses on access to services in Medicaid, the other on Medicaid managed care arrangements. Today, I’d just like to feature a few of the elements of the proposals, other proposed rulemaking around access. You’ll see that rule linked here.
35:30
There’s three central emphasis with just kind of capturing main themes in that rule, which is extremely voluminous. The first is an interest in proposing specific strategies around improving the quality of medicaid funded home and community based services. That takes a form of proposing to adopt in a new and comprehensive set of quality measures enhancements to the process by which people are assessed. And we determined for care plans of Medicaid funded services, and also new access standards in terms of the timeliness of initiation of services. When someone has qualified for, and it’s been assessed and approved for them. So all kinds of features that … as materially related to improving quality of outcomes also.
36:25
A big emphasis in this area is try to find the data that we have available so that we can examine disparities among populations, notably for people of color. Which is, we’re still at a very nice point of really capturing the extent to which sets of keys and identifying and illuminating opportunities to eliminate disparities. There’s also a big emphasis on transparency. And you see this through actually both rules, as well as public literacy and engagement. So a lot of requirements for states to standardize and illuminate the rates their pain to really connect people to information about waitlist for services in a much more consumer friendly way, rather than having folks have to navigate multiple websites and information sources.
37:13
And also, requirements around engaging not only Medicaid members, but community advocates in the rate setting process, particularly for three specified home and community based services, with the idea that collectively, that type of input will improve the viability of those wages, and the opportunity for people to be, well, well compensated in this work. And then, very notably, the last piece is a new premise around requiring that a minimum percentage of Medicaid payments made to the direct workforce who performs those services.
37:53
And this is as compared to the administrative costs that agencies will incur who employ these people, are really a meaningful proposal around addressing those workforce constraints that I discussed earlier. So, I wind up there, really, just to say, this rule is open for public comment. I know that all of us have shared interests in really volunteering impressions about that, and CMS would greatly benefit, so urge you to do so. And I would love now to turn to Ms. Williams. We’re really looking forward to hearing your lived experience name.
38:34
Thank you so much, Kate. Good afternoon, everyone. I am a black female with curly textured, chin length hair. I am wearing a Seafoam Green dress that has white and blue swirls in it.
38:48
I come to you from what was originally Muskogee Territory Indian Territory. I live in Evans’, Georgia, and I was trying to hide my background, but there is no blur feature on Go to webinar which is OK but I am in a therapy closet. So, welcome to my real life world experience, if you will. Next slide, please.
39:15
Thank you to the Alliance for allowing me the opportunity to share Noah and I story. And, honestly, the, the best way, I know how to do that is through pictures. We are a complex family, but we live a very full life and there are several intersections with various policies. I know we’re here to talk about the Home and community based Service Policy, but our life intersects different ones.
39:44
So, just wanted to be able to give that perspective and how we got to this point. For those who, there are a lot of pictures here, and there, there is out text. So, as you, if need be, as you go over the pictures, it will define the images.
40:04
In my previous life, before I had, no, I was a health educator and community liaison for a grant program that worked with high risk mothers and infants during my pregnancy.
40:20
I, in my second trimester, I began having significant swelling in my feet, and because of my experience and my, my previous work life, I began checking my blood pressure, and I was monitoring that, and I was sharing that with my health care providers, only to be dismissed, because I only had swelling of my feet.
40:45
two weeks, prior to having Noah, I ended up going to the hospital, because my blood pressure was extremely high. It was stroke level.
40:54
By the time I got to the hospital, it had come down and the nurse had had a conversation with the physician, and came back and asked me if I was a hypochondriac.
41:05
Because they don’t have patients that check their blood pressure.
41:09
I was sent home. I followed up with my other, my, my midwife.
41:13
And I was started on blood pressure medicine Fast forward two weeks to the day that Noah was born.
41:22
Prior to him being born, it had been 24 hours.
41:25
since I had felt a move, I went to the hospital. I did not go earlier based off of the interactions that I had had with the previous care providers. So I waited 24 hours before I went to the hospital while in the hospital I was monitored for six hours before I was transferred to another hospital because they saw deceleration in his heart rate.
41:48
I was transferred very casually to a different hospital that in the event that I would deliver Noah, that this hospital would be able to take care of him because I was only 26 weeks at this point. So that’s 14 weeks before term.
42:05
When I get to the new hospital, it had been only 10 minutes, I was being rushed to the OR, they pushed my mom to the corner, pick up my clothes off.
42:14
They rushed me to the OR.
42:16
And the last thing I heard before, I was put to sleep, was the anesthesiologist and the OB that I had never met arguing where the anesthesiologists were saying, We don’t know, I don’t know what our blood pressure is, and she could die to the obese response. If we don’t put it asleep, the baby is going to die.
42:34
Welcome to the introduction of Noah, and naomi’s Misadventures to Life. In this middle picture, you see a picture of Noah.
42:43
When he was born, he spent 153 days in the NICU.
42:49
Noah is a train wreck on paper. We don’t shy away from that.
42:52
We share that, and he is not that paper. So as you see on the slides, we have had a lot of medical experiences.
43:01
We’ve had a lot of near misses I’ve said goodbye to him Twice I’ve had to say, allow unnatural death twice. And with that, on the other side of the screen you see where he is and an ATV with a lot of things around him, surrounding him. But he’s driving and he has a huge smile on his face.
43:19
And my shirt does say, I saw I came, I saw, and I made it awkward, which I do. We do not shy away from hard and uncomfortable conversations. We live our life to the best of our ability, the good, the bad, the ugly. We make it the best life that we can. Next slide, please.
43:42
So with that, just to give you an idea, I told you I’m here at … Therapy Center.
43:47
An idea bring you into a day of the life of Naomi and Noah. On the right hand side, you will see a list of daily medications that Noah receives.
43:59
Just about all of these, he receives twice a day, and this is not his full extensive list. These are just the ones that he gets every day, not his as needed medications.
44:09
On the left side of the screen are his diagnoses. And I purposefully did not spell out all the abbreviations, one because I am Phil a health educator. And I want to encourage you to learn about our world and to see what some of these diagnoses are told, you know, it’s a train wreck on paper.
44:30
So you can go and see what some of those things are, as well as, this is the introduction that parents get. We get talked to a lot of times in abbreviations. And we have no idea what they are, So we have to go and learn what it is. So we know how to best advocate, not just for our child, but for our family, as well.
44:50
Then, in the metal, down at the bottom, there’s a list of his active specialists that he sees. These are not all the specialists that he has ever seen, but they are the ones that are part of his current care team. And only two of them on this list, have we been able to go to seeing them once a year? Everyone else, we still see them 3 to 4 times a year.
45:16
And what might be most prominent or startling to most is the picture that is in the middle, and this is a care, a care map that I created in 20 19. I am not the originator of this idea. This came from another mom, from Massachusetts. I believe, Mass General.
45:37
But it’s a great way.
45:40
It’s a great illustration to show.
45:43
These are all of the people that I have to interact with that Noah is connected to in order for him to have the life that he has.
45:56
It’s a lot of people with a lot of moving parts.
45:59
If you go to the next slide, please.
46:02
And so, just wanting to give you an idea of what a day in the life for us looks like, and that’s what that previous slide was. So, how did we get here to being able to have a home and community based service waiver?
46:15
Noah is actually receiving what’s called the comp waiver, and I’m very thankful for it because it has truly enhanced both of our lives. And the pictures that you see here.
46:29
The one right in the middle, he has we were able to adapt our home and have and an accessible role and shower and you might see some little feet that have Red Sox down at the bottom.
46:45
And that’s him on a a shower of an adapted shower and potty chair.
46:53
So it wasn’t gonna show him doing all his stuff, but the waiver had enabled us to modify our homes. So he is not relegated to having a bed bath only. He is able to go into the shower and actually able to use the bathroom.
47:11
That’s pretty significant, and the waiver also enabled us to be able to modify a van, to make it wheelchair accessible. No, it does not walk independently, he is wheelchair dependent, and he got to a point where it was difficult to be able to lift him and then lift his van into irregular sized vehicle.
47:35
So, the waiver enabled us, see, that did not pay for yvan it and it did not pay fully for the modification.
47:44
But it helped us offset the costs in this picture.
47:48
You can see us, were overlooking the lake as the Sun was setting, some of the other things that it has enabled us to do know.
47:57
It was able to go to have a typical kid experience, which was going to her overnight camp. He spent five days at this overnight camp and he was able to get on a horse. Or something I never thought he would be able to do, not just get on the horse, but to be able to go to overnight camp based office medical complexities.
48:15
The waiver enabled him to do that. They were able to pay for that for him.
48:20
It helped us send him to To art Camp, a local art camp is not a special needs camp.
48:29
It was an art camp. And we had an amazing instructor and caregiver that we’re there to support him and see him for who he is and work with him to discover his talents. And from that, he is an amazing abstract artist and, thus, no land art was born.
48:50
It also enabled him to be began doing yoga therapy.
48:54
He has a lot of respiratory challenges, and yoga has been amazing. I taught him how to breathe.
49:05
And so, being able to work through, learning his body, what he is, what he has control over, and teaching him new things to help him live to the best of his ability.
49:18
And, last but not least, the waiver has helped me be able to continue working. There’s a picture down here. I used to work as a family support co-ordinator at our local children’s hospital.
49:30
I was able to go back to work part-time, and assist and help families navigate systems.
49:39
Just like I do in my everyday life, but the waiver enabled me to, to get caregivers to, to be able to be with Noah because there’s no daycare that would accept him.
49:52
And as great as the waiver has been, we have and continue to run into some challenges, and I’m ever so grateful for our community.
50:02
Here’s a picture here of four young men in front of our home, in front of the ramp that they built for us.
50:10
There were a lot of loopholes and hoops that I had, I would have had to jump through to be able to get this ramp with waiver funds, and we just didn’t have the time or opportunity, and so our community stepped up. And Rob Gates, and his sons and a friend built this ramp for Noah, and I wasn’t able to compensate them. However, we are eternally grateful because now Noah is able to get into the house.
50:41
So with that, if you go to the next slide, please.
50:45
Just wanting to be able to share. I know this was very fast.
50:48
I look forward to the question and answer segment, but this is Noah in his bedroom, wearing a shirt, a green shirt that says, My life matters, and it does, because, I’m sorry, Not sorry, that if I cry.
51:05
This is my life, and it’s emotional, and it’s hard at times and sharing some of these things, so if I do CRI, I am OK.
51:15
Just know that this picture shows his life matters, and individuals and families like mine. Our life does matter. And one of the conversations that we’re not having enough of is about neglect, abuse. And Phil aside and Phyllis Side is where it’s murder, suicide, where parents kill their child and then kill themselves. The top three headlines here are from Georgia.
51:46
The top to have happened in 20 23.
51:54
And then the last one I’m wanting to show, this is not just the Georgia problem, this is a national problem or challenge that we need to have discussions around.
52:06
And part of that leads into, how do we take care of the caregivers? as well as how do we take care of caregiver being parents, as well as direct support personnel to where to live a livable wage, to what Kate mentioned as well. So that is a quick down and dirty overview of our life, and I will turn it back over to Kayla.
52:35
Thank you, so, so much to all of our panelists, and, and this was an incredible overview. Thank you, Naomi, for sharing such a personal portion of your story.
52:48
I can’t imagine that this is the full story and that there have been, I imagine that there are so many challenges that you brave every day and every moment, just living this.
53:03
So, we are so grateful for you being here and sharing some of your story with us and allowing us to learn and be inspired by you and by the work that you’re doing.
53:14
So, if we can have our other two panelists join us, we’re getting some great questions from the audience.
53:22
And if you have a question, feel free to ask it. We have a little bit of time for some good conversation.
53:30
So feel free to put your questions in the chat, and I will I will kick it off with an audience question for Let’s say I think this one will we’ll ask Amy If there are any Medicaid funding opportunities for home evaluation?
53:52
Of competency for folks who need testing, but Are homebound for not able to leave their homes I’m sorry, for Medicare and Medicaid.
54:03
OK, for testing. So, I’m sorry, he said it again for testing, if they’re Bill, yet.
54:08
It are there Medicare funding opportunities for home evaluations?
54:18
In home, I believe, yeah, testing to see if there they qualify, I assume for the services and other things for people who are homebound.
54:27
Yeah, so, there’s the Medicare Home Health Benefit, but a number of there isn’t a specific Medicare benefit, per se for that, but a number of like Accountable Care Organizations or Medicare Advantage Plans will go into the home and look to see if, what kind of services a Medicare beneficiary may need. There could be things that they may be offering, like to prevent falls or other services that they have. But not a specific. They don’t.
55:00
There could be durable medical equipment that someone can need. A hospital, bed wheelchair.
55:04
Things like that, but not the sort of ramps or grab bars. Medicare does not pay for those specifically. There are, like I said, there are some folks who go do an evaluation for that. And then specific Medicare Advantage plan or Accountable Care Organization may choose to paper. But, as a broad benefit across the board for everyone in Medicare, there, aren’t those services available, at least right now.
55:27
And can you talk a little bit about the hospital at home program and how that might continue to grow or if that would, You know, how that relates and interacts with home health benefits mm?
55:38
So, in order to be eligible for it, you would have to have be needing an inpatient hospital, stay often for something like congestive heart failure, COPD, really, something more on the medical side, not not surgical.
55:55
And then, if your hospitals participating, you, you as the patient, and your doctors, would have the conversation: Are, You know, is this something that you feel comfortable doing? Do you feel comfortable having people come into your home? Do you want to be at home? And then you would agree to it, and then the house you in the hospital would sort of make all the arrangements for the specifics for what you need. But it’s still inpatient level of care, in terms of, you know, the treatment you need. And then, when you’re no longer inpatient eligible, because you’ve recovered. You would then could, potentially, get other services.
56:32
Although this is not a program right now, A lot of people are talking about sniff at home skilled nursing facility level of services in the home. And so that is a potential area for growth.
56:42
But the, the, the growth areas in, in terms of the current program, which would run through 2024, would be the facilities that can provide it. You know, it’s generally, these have been in more urban areas because of the ability to get the equipment to the patient because, you know, these are short-term stays. And so, they need to get the get there in a very short time matter of, you know, hours to provide these services.
57:10
And then, know, also having the workforce available to support what’s needed and the technological infrastructure, because so much of at the hospital home require, you know, is dependent upon that sort of two-way communication. And, the, the telehealth services are available. So, there are, as I said before, there’s companies that are helpful Helping to facilitate those.
57:34
And that there’s opportunities for growth there, and the hospitals themselves have to want to be able to do this. And so, it will be, you know, up to congress oriented CMS to decide if they want to continue this program, sort of as a standalone program that they want to continue to have it as if you have to apply and meet certain quality measures. And so, there’s that.
57:56
But then, also, as I mentioned this live at home there, is there like, is there a possibility for offering more continuum of services in the home, even if the patient doesn’t need that hospital level of care?
58:10
So, as Kate mentioned earlier, Medicaid is the primary payer for HCBS.
58:16
So, Medicaid is a very influential stakeholder.
58:20
And to that end, CMS released, and, as she also mentioned, it’s accepting comments on two proposed rules in Medicaid on access and Managed care.
58:30
And the access rule contains many of the HCBS proposals, including new requirements for person centered planning, reporting, quality measurement, as well as the more publicized proposal to require that at least 80% of maybe Medicaid payments, or personal care, homemaker, and home health aide services is spent on compensation for direct care workers, as opposed to administrative or overhead, administrative overhead or profit purposes.
59:04
So I do want to talk about that 80% threshold. But first, I want to talk about the people that actually make up that workforce.
59:11
and what we know that, of these people of that.
59:15
Most often, they are women of color who have immigrated to this country, and are earning a median of maybe 12 or $13 per hour.
59:23
And we know that there has long been a shortage of workers available to even provide the services, and that was significantly exacerbated by coven 19.
59:35
So, a lot of things going on here.
59:38
And since we have your expertise, Naomi, I would love if you could just tell us a little bit about your experience and really getting paid as a caretaker to provide these services and what it was like for you to become and eligible provider Tim to help your son.
59:57
Thank you for that question. So, I am I am an unpaid caregiver.
1:00:06
I do other, I do all the work. I am an employer.
1:00:11
So there are different types of, with the specific waiver that Noah has, that you can either go to traditional or what’s called participant direct and traditional. You have an administrator, they have staff, they have the overhead, they have benefits, all of that. As a participant. Indirect, I am it, or there’s an, what’s called an administrator, but that administrator is unpaid. but still required to handle all of the things as an employer. So, finding, I find the staff, I train them, I hire them. I fire them, I set their schedule, I have not had to fire. Anyone. Let me say that. I’m really good at my, my picker is pretty good.
1:01:01
So, I I work probably a good 40, 50, 60 hours.
1:01:10
As administrative, that’s not including taking care of Noah, that’s not including working my jobs as my contracts and being a consultant, so, I am not paid. And then when you talk about the caregivers, the reason I chose to do participant direct, people may say, Well, why don’t you do traditional one? There are no traditional providers in my area that will do a minor.
1:01:38
We’ll hold it together.
1:01:41
So I don’t have a choice in that fact.
1:01:45
And then choosing to do participant direct when, when Noah becomes 18, then I can look at going traditional.
1:01:53
But also doing participant direct that enabled us to have more access to the funding of his waiver.
1:02:01
So he has more money if I’m, if I administrate it than a traditional provider because there is no overhead quote unquote overhead with me So I’m able to pay His caregivers more than a traditional provider.
1:02:18
However, it’s still not a livable wage.
1:02:21
Hmm hmm, hmm, hmm, Hmm, hmm, hmm, Wow.
1:02:24
Everything you say is going to have is going to take my breath away.
1:02:27
I think just that, what I’m hearing is, besides the passion in your voice, is that there are a lot of nuances to your story, and that, my, what I know, at least from working in Medicaid is that it always varies by State. And I’m hearing that it varies by population.
1:02:44
And so, Kate, I’m just, I’m wondering that I know some states do have a similar threshold, or a threshold of requiring a certain amount of payments to go directly to workers.
1:02:58
But I was wondering if they have data that it’s available to show what they do pay in general and wear it, Or if other people can access this data? We can know how much states are giving to providers, and then how much the workers are actually getting.
1:03:17
I deeply appreciate that question. I, I wonder if I could just for a moment, though. You know, really honor, when Naomi said about the choices that family caregivers are put in the position of having to make on a day-to-day basis.
1:03:31
The parameters of the coverage has evolved over time, in just the way that she said, you know, from a point, prior to the 19 eighties, where there really was no choice, other than to work with a licensed home health agency that has evolved. So that much more opportunity for self direction of services as now permissible, and almost all states. That said, I think there’s still remain some tensions about teen family caregivers.
1:04:04
Sort of a socially embedded premise in our society, that women are expected to do this work, and I think that that’s something we really have to wrestle with as the family dynamics, the geographic distance, amongst family members.
1:04:18
Obviously, I’ll prevent tremendous strains and also you can here, Naomi, the exhaustion and the P this has caused you and just in terms of balancing of those factors for yourself. So we always describe self direction as this amazing evolution and improvement in Medicaid, but it also comes associated with everything you described. And just deeply conscious of that. And even, to the extent that Medicaid programs are able to pay for family caregivers as you are seeing, Kayla.
1:04:50
There has not been a nationwide standard for the extent to which there is a pass through of a specified percentage of those the reimbursement dollars so that people are assured of a meaningful viable wage on an hourly basis. So your question was about experience and see if there are a small set of States that have moved forward on their own initiative with a minimum percentage pass through. Some of those states did essentially wage analyzes looked at their individual circumstances, economically regionally and it is principally leaping off. The experience of those states that CMS has proposed the 80% threshold as a, as a uniform national standard. I will say think states think of this as a very positive step to propose. A minimum.
1:05:39
There is some range of opinion, about 80%, and about potentially building in some exceptions, for instance, for small providers in rural settings, who may have higher administrative costs for small businesses, owned by folks of color who may need to buy those administrative services. So, we will be commenting to raise some of those scenarios, and urge CMS to take a permissive posture with some of those aspects. But, again, strong support, not as much evidence base as I think we would like to see nationally and that we hope will develop with implementation of the standards.
1:06:22
And do you think that states will actually let me back up because I I can only imagine that states are also dealing with a lot.
1:06:30
So, would you be able to tell us kind of the the world that states are living in in addition to thinking through what’s going on with HCBS and responding to CMS, and these pretty broad, you know, two letters, but I also know that there’s coded, still happening and going on. We’re still coming out of coded.
1:06:52
And that states are doing a lot of redetermination, things like that, but can you level set kind of what States are prioritizing right now for us?
1:07:01
Absolutely. And, you know, as as we all experience, the 19 pandemic was just a maelstrom of urgency illuminating, and in so many cases, longstanding needs, urgent needs, and disparities that I think Medicaid programs are uniquely situated to address.
1:07:22
So, you saw, obviously, programs pivoting so rapidly to try to respond. You know, from the standpoint of preserving access to covered services through telehealth.
1:07:37
The many flexibilities that were afforded by the federal government around where people could receive services and who could provide them, I think a lot of the learning that we had from that was so instrumental as were emerging from the, the formal end of the public health emergency in terms of what can be embedded ongoing, So telehealth And essentially proven as a major enabling feature in states are going forward or that less clear or some of the flexibilities around Home and community based services. And again, that aspect of pink family caregivers. I think you see significant variability across states. But that’s a piece that states are really looking at, is to what degree to hold onto and make permanent the opportunities that we had during the pandemic to just think creatively and meet people where they were at that time.
1:08:29
Think, another central proposition this year, as you mentioned, is really bringing all states into compliance with eligibility standards at the Federal level that are designed to smooth people’s access to Medicaid eligibility, and then 18 continuous eligibility. That’s a big area of Focus for states, this year, as they have been charged with Congress, would be determining the eligibility of every single of the only almost 90 million people who are served by Medicaid principally, so that piece. And CMS absolutely looks at these access and managed care rules as companions. So not only do we want to make sure it is simple and straightforward for folks to access Medicaid coverage and remain covered, but really make it a meaningful benefit in terms of accessing services, and also examining and improving quality and, and parity of experience across very various coverage groups.
1:09:28
And, speaking of coded, Naomi, I was wondering what some of the shifts have been that you’ve experienced going through Kovac, coming in.
1:09:39
And out of it, if there were certain flexibilities that were helpful during hobbit, or, certain things that were more challenging or things that you’re looking to the future, that is what you are preparing for it as we’re coming out of it.
1:09:54
And I would say both, and so the, the, the good things that came, right?
1:10:03
I tend to cover, It was hard. It was hard for all of us.
1:10:07
It was extremely hard and decimating in the disability community.
1:10:17
We are typically a forgotten community, and it was exacerbated during coven.
1:10:26
With that said, we learned that, um, there are things, there were workarounds to be able to, to help families like mine. And some of those things were with the, the telehealth That, that was huge, and that’s something that we are hoping that will continue and will stay.
1:10:56
The family caregivers being able to be hired as, and that is something that we are, are hoping, that will stay. There are provisions, so I, I, would not be able to be a family hire. Unless I had someone who would be an administrator of NOAA.
1:11:19
Good waiver, but for families who have that, you know, where there are other people in the household, where they, they can make that work.
1:11:29
So, that, that is something that it worked, and we hope that, that that stays another way where individuals could be served outside of their home.
1:11:42
As otherwise, The way it’s set up right now, our home is the institution.
1:11:50
We move outside of the community institution or, you know, a hospital and the home because the services have to be provided in the home.
1:12:01
And so, through Cove Ed, there, there were some provisions to where services can be provided outside of the home without getting into the nitty gritty of the different codes.
1:12:15
Some of the things that that are our chat that we’re challenging and that still are, is not, not everybody, has benefits, and so now I’m competing.
1:12:29
I have to compete with fast food at the compete with big box stores for wages.
1:12:36
And because Noah is a minor and he’s in school, his budget, I am, I’m figuring it out of how to keep the help that I have to make it attractive enough.
1:12:51
She loves my son.
1:12:53
That’s why she’s still with me, because what she gets, what I can pay her, is not enough.
1:13:00
So that the direct direct support pay is, is a huge challenge, not being able to have benefits, bear things that, My state has not done Medicaid expansion. when Noah was on the waiting list at 5 at 4. There were 6000 people on the list.
1:13:24
There are seven out over 7000 now, and our state’s budget could fix that.
1:13:31
And they’re choosing not to, um, can you remind us how old Noah is now?
1:13:36
He just turned 14, just had a birthday. They sing happy birthday. Please tell him, we all say, Happy birthday. I will, and I will just say, when you talk about the, the access and information families, programs are as good as the information that gets to the families that need them. And it’s, how do families get that information. So a lot of what I know has come from other families.
1:14:02
It’s not coming from those that are instituting the policies or pad, the organizations and programs that are making these decisions and overseeing what my family should or shouldn’t have. That’s not where we’re getting the, the information. So the access, if I was not an advocate, Noah would not have his waiver now.
1:14:26
I was told at four to wait and so he’s 18 to apply because that’s when he would get it. I said, well, if for some reason the state has a windfall of money, if he’s not on the list, he will never get it. Then the very next year there were some changes. There were some changes with Noah. There were some changes with me, there were some changes in the state. He was able to get the waiver, There are families that stayed on the waiting list 10, 15, 18 years.
1:14:56
And even, I mean, yeah, you are going to have a solid, just crank together.
1:15:00
So, even with that, I am drawn and I And we have an audience question that people are worried about, you know, the NOAA, that don’t have you.
1:15:12
And we’re wondering about people who receive HCBS elsewhere.
1:15:20
Maybe in public housing so I’m I don’t actually know.
1:15:23
Do either of you know any of you know how many people receive HCBS in public housing authorities?
1:15:31
And I know that it varies by state but I’m not sure if we even know that to the point about needing more data.
1:15:40
Yeah, I have to say I don’t know of a public source that illuminates.
1:15:45
People settings, to that extent, folks are in all kinds of settings. So, they’re in publicly supported housing there and supportive housing there, in private apartments there in group living arrangements. I mean, that the span of the HCBS settings is very considerable. And there’s been a lot of work as, you know, killer in the last several years, making sure that folks in those settings are truly integrated. There’s a major rule that was released by CMS that as Medicaid programs to review each and every environment in which people receive, come and community based services and make sure it was not siloing. People with disabilities are not not treating them as, as Naomi said, really powerfully. So they are institutionalized in their own home setting that they have a chance for meaningful rates and opportunities and integration with community.
1:16:41
So that that’s something that a lot aisle seats are also focusing on.
1:16:46
Hmm, hmm, hmm, hmm.
1:16:47
And I wanted to take some time to look forward and think through some of the things that are enabling growth.
1:16:54
And I know them there are things to hoping to address some of these waitlist and things like that. I’m wondering about technology.
1:17:03
And if any, if you know of any an innovative models or technological advances that are enabling growth in this area or that we’re looking toward and hopeful for no in prefer HCBS improvements?
1:17:24
You can see each sphere. HCBS, specifically with Medicare?
1:17:29
Yes. Specifically, HCBS, if you want to broaden it to Medicare, I’m sure we are. We would all love to know.
1:17:40
I really are with the HCBS, so Kate know something specifically there.
1:17:45
Yeah, so, I want to defer to Mimi. I hope we’d talk about what she feels is also needed that we don’t currently cover. But I would say Medicaid programs are increasingly covering remote patient monitoring, which is a means essentially, you supporting folks and independent living. Where folks who have conditions that would benefit from support from someone who’s a nurse or other clinical professional, could be, you know, associated with that help, you know, ends to live independently. So that is not the case in all states, but it’s kind of growing. I also really want to credit advocates for folks with intellectual disabilities have really promoted approaches like smart home.
1:18:35
So environment accessible environments that essentially wrap around an individualist disability and make it easier to live at home as opposed to asking people with disabilities to conform their behavior, it’s really bringing the environmental launch. Naomi talked about the home modifications that are covered by Medicaid, Again, still some administrative challenges there, as she described. And I think that is something we can improve on. And finally, I do feel like all programs across the country have proven the success of the use of Telehealth.
1:19:14
All programs are making a substantial set of services permanently available through telehealth, not only through video conferencing, but audio only call, so folks in remote areas, people with disabilities, who may require technology accommodations. All those folks could be well served in that way, and I do think that Medicaid has moved a lot faster than some other peers on those things. And especially paying at parity for some of those services, which is something that kind of remains attention for peers in general.
1:19:48
And they really do have oh, I’m sorry. Sorry.
1:19:52
I was just going to say similar things, at least on the, the medical services side for Medicare, remote patient monitoring. Medicare now pays for their particular requirements around it.
1:20:03
But it does allow physicians to really keep track of their patients. You know, whether it be weight, blood pressure, other things to help manage them, keeping them in the home, telehealth.
1:20:13
Absolutely, and I would say that we, I think, alluded a little bit to, like, different places people call home, and the there’s a lot more focus in nursing facilities of Medicare beneficiaries and nursing facilities, where, oftentimes, they had a hard time.
1:20:29
It seems kind of counter-intuitive, a hard time getting medical care, and the facility would often send them directly just back to the hospital, because they couldn’t be equipped to it. But now, with more of the technology, more of the telehealth and allows physicians, nurse practitioners you able to provide that care and help manage some of the care to the patient, is an OA shuttling back and forth between the nursing facility and the hospital, it really keeps them in their home, which is, is the nursing facility. So, there’s a number of examples of things like that, but it’s also a rapidly evolving area. So, we were having this conversation, is six months there could be a whole variety of other services as well, and more innovative ways, and thoughtful ways of being able to use the technology that exists to deliver the care of the patient.
1:21:14
I know, and we only have a few more minutes. I do want to, I think, pick up right there.
1:21:18
I want to think about the next six months in the ways that we can try to help no move the needle.
1:21:26
So, Naomi, do you have any recommendations, four policymakers for other stakeholders, for people that are advocating?
1:21:37
Anything that you can tell us, too, to put a little of you inside of all of us. I’m, yeah, my, my two things would, would be, as simply as I can say, it, is, there is a person attached to the policies that are being put in place. So whether it’s the paperwork or as you’re thinking through, remember, when you’re about to make a decision, I hope Noah pops up in your face, or I pop up in your mind, how, how would this affect them.
1:22:07
It, it’s not just theory, it’s how will this impact someone down the line and and the other is, you know, nothing about us without us. And what that truly means is bring someone, bring a Naomi, and bring a Kyle and bring a nandy.
1:22:28
And, and at the beginning to be a part of the conversation to, to give real life experience of, yes, this could work.
1:22:39
No, there’s this cut and I don’t, I don’t have a behavioral challenge with Noah, but there are many families that do and behavioral supports are significantly lacking with waiver services the way that they are provided.
1:22:56
And so bring us into the Congress, we we are subject matter experts, Degreed or un. Degreed?
1:23:06
Amy, can you give us some recommendations for how we can help Medicare help us?
1:23:13
Yeah, I mean, I think it is, the, demonstrating that the value of the services to the Medicare beneficiaries. And, you know, what the opportunities are to keep people in, allow them to be where they want to be to age in place.
1:23:28
To get, you know, services, To be thinking creatively about how to deliver the care. And that, you know, just thinking about the hospital at home, that, you know, patients can be really sick. But there’s still with the technology. There’s a lot of ways to continue to treat them and ensure there’s more quality.
1:23:45
So thinking about that continuum of, you know, maybe they’re not trying to keep them from being impatient eligible in the first place with additional services in the home.
1:23:54
And I think has been said, you know, that it is the hearing from the perspective of what works and what the Medicare beneficiaries want in their perspective as well, and what’s important to them. And designing policies around around that.
1:24:10
Medicaid, Medicare, we often focus so much on the provider side.
1:24:14
But really, you know, keeping the Medicare beneficiaries front and center as well about sort of what their needs, what their needs are, and what makes their lives easier as they age.
1:24:24
Absolutely. Thank you. And, Kate, how can we help states, and how can we support them? And how can we advocate with and talk to them?
1:24:35
Should I … just a firmware? Naomi, said, I think that the most powerful means of advancing Medicaid coverage of home and community based services is, is starting from the perspective of the people who receive them.
1:24:50
Naomi, are powerful witness to that you are uniquely qualified to talk to, where systems, however, well intentioned do, not work in the way that is, wrapping around what you need you and your son, and the longitudinal data. We have the illustrates, not only the opportunities for meeting people’s preferences, but also cost savings is only amplified and made relevant and powerful when it is linked with personal narratives of that kind. You are a powerful emissary for that.
1:25:28
I think back, as I mentioned at the outset, thinking about the origins of the Medicaid waivers, Juliane Beckett, as I said, in Iowa Mom, I have a daughter who had significant disabilities worked channels through her. Congressperson ultimately was successful in Persuading then President Reagan, to give special permission for Medicaid Services to be used in the community that did not arise because of statistics or legislative advocacy. On a formal basis that was the power of story. And I personally am so focused on that aspect, how we continue to share that, especially with policymakers who may, despite the incidence of family caregivers being extraordinarily high, just not have had that experience and in their lives. So that’s a piece I just say, you know, amen to that.
1:26:23
Amen. Amen. Amen. Thank you, all, so, so much, unfortunately, that’s all the time we have. And we had a lot of questions, still a lot of audience participation. I promised a riveting discussion and I think we did not disappoint. So I want to invite Chris back. And thank you all again, so, so much for sharing your time, and your energy and your stay with us.
1:26:45
and thank you to the Alliance, especially for including, and being very intentional with who they chose to have on this panel, and for giving us the beautiful benefit of having Naomi’s experience and knowledge. So thank you so much, Chris, and the rest of the line.
1:27:00
Great. Thank you, Kayla. And thank you Amy And Kate and Naomi for joining us today was a wonderful discussion hours, really enjoying being able to become a backend with you all. So, thank you so much, and then for our audience today, let me just take a minute and ask you. Later today, you will be receiving a brief evaluation survey via e-mail.
1:27:21
Please take a minute and fill that out. It really helps us as we design future programming, to know what worked for you and what didn’t.
1:27:28
So, we appreciate your feedback pair. We have a lot of public webinars and in person events throughout the year. In particular, if you follow our LinkedIn page, on our website and print information on our upcoming Signature Series events on envisioning a patient first health System to look for those. And then, a reminder that a recording of this webinar, recent trends in policies impacting Medicare and Medicaid, Home and community based Services, As well as additional materials are going to be available on our website.
1:27:55
That concludes today’s webinar. Thank you so much for joining us today.