Cuts Proposed to Medicare, Medicaid, and Disability Services

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CARLY PACHECO, HOST: From KVMR and in partnership with FREED, this is Disability Rap.

TED JACKSON: By doing these cuts, we're rolling back the clock, and it's just not good for our society. It doesn't help for people who want to be in the community and want to work, and it's going backwards.

PACHECO: Today, updates on proposed cuts to healthcare and disability services here in California and across the nation.

JACKSON: At a moment when we need the leadership of California to fight back and defend our rights to healthcare, instead our state government is considering caving in to the wishes of folks back in Washington, DC, that want to destroy this healthcare system.

PACHECO: That's all coming up on Disability Rap. Stay tuned.

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CARL SIGMOND, HOST: Welcome to the Disability Rap. I'm Carl Sigmond with Carly Pacheco.

PACHECO: Last month, the US House of Representatives passed a budget reconciliation bill that proposes cutting over $1 trillion in federal healthcare spending. The program that would see the largest cuts is Medicaid, which provides health insurance to people with low income and people with disabilities. The Congressional Budget Office estimates that the bill, if passed into law, would cut over $800 billion from Medicaid alone, resulting in nearly 11 million Americans losing Medicaid coverage.

The bill also proposes cuts to the Affordable Care Act, SNAP, and to Medicare, which provides coverage to more than 61 million adults aged 65 or older and almost 7 million people with disabilities under the age of 65. Meanwhile, here in California, disability rights advocates have been flocking to Sacramento in recent weeks to push back on Governor Gavin Newsom's proposed state budget, which includes massive cuts to the In-Home Supportive Services, or IHSS program, as well as cuts to services for people with developmental disabilities.

IHSS provides in-home care for people with disabilities and older adults in California. For more on these proposed cuts at the state and federal level, we are joined by two guests. Claudia Center is the Legal Director at the Disability Rights Education and Defense Fund, or DREDF. Prior to her time at DREDF, Claudia was the Senior Staff Attorney in the Disability Rights Program at the ACLU. We're also joined by Ted Jackson, the Director of Public Policy and Community Engagement at the Marin Center for Independent Living. Ted is also the Statewide Director of The Disability Organizing Network here in California.

SIGMOND: Well, Claudia Center and Ted Jackson, welcome to Disability Rap. It's great to have you with us, and Ted, it's great to have you back on the show. We want to begin with this proposed budget reconciliation bill at the federal level really targeting Medicare and Medicaid. I think a lot of people are familiar with Medicare, and a lot of people know what Medicaid is, but maybe don't fully realize what it all covers. Ted, I'm wondering if you can begin by talking about Medicaid in general, and then what these cuts could mean for our community.

JACKSON: Thank you, Carl, and it's really great to be back on Disability Rap. I remember when this show was live, and it is still live in some way. I've had to talk about Medicaid more in the last, I think, four months than I've ever spoken about it in my entire life, and I think a lot of us have. Medicaid is historically a successful program that was a safety net healthcare for many people who had a lower economic status, or for people with disabilities, or people over the age of 65.

One of the great pieces of Obamacare expanding our promise of healthcare to Americans across the nation was that it involved Medicaid expansion so that more people could get on to Medicaid and make sure that they had healthcare. Through Medicaid expansion, we've been able to cover people who are at 137% of the poverty level, so over the poverty level, and those are often people that get caught in the gap between not being poor enough to qualify for services benefits in something like Medicaid, but aren't making enough to pay out of pocket for healthcare premiums, and don't have a job where they might get healthcare at work.

It really covered those people. Traditionally, Medicaid would cover older adults, especially older adults who didn't have another insurance source. They met the requirements on the income. They were poor older adults. Actually, it's been really important in today's day and age, not just in California, but around the country, because people are living much longer. Right now, we have really an older generation of baby boomers who have outlived their savings.

They expected to live until their mid to late 70s, and now are in their 80s and 90s and have had to reconfigure their life. This has meant, really, a lifesaving effort to make sure that they have healthcare. On the disability side, it's traditionally covered people with disabilities throughout life, from cradle to end, and the expansion opened it up to more people. The impact of doing cuts to Medicaid, which we call Medi-Cal here in California, would really mean that a lot of people who have been receiving healthcare services would be cut from those services.

Medicaid doesn't just cover traditional healthcare, going to see the doctor or getting prescriptions. Those funds go into several other programs that are really, really important for maintaining our independence and access to community integration and living in the community and being a part of a community for a person with a disability and an older adult, and keeping us away from institutionalization, which is the whole goal and point of the independent living movement.

These funds are used for IHSS, in-home support services, what might be called in other states home and community-based services, but that's to have a home care provider in your home that helps you and that allows you to be in the community. It also goes into programs like CalAIM. We actually think the CalAIM program is going to be pretty secure, which is great, so that folks can continue to get enhanced care management.

Medicaid goes into a really holistic piece of different parts of healthcare, and under Obamacare, we expanded that. We shared the love, so to speak, with more and more people who were falling through the cracks. With these cuts, it would be devastating because there would be families that would no longer have healthcare again. They'd have to go to the emergency room. That's going to cost the government more money as prices go up.

It also could cause a health crisis. One of the many things that we probably learned during the pandemic and are still learning as we are still recovering from the pandemic is that everyone needs access to healthcare. [chuckles] If someone has a virus in the community, there's a good chance a lot of people in that community are going to get that virus. Healthcare is also a human right. We have to think about it from that standpoint.

Not coming from a medical model perspective around cures, but thinking from a social model perspective that healthcare is an accommodation that allows you to be present in the community, to hold a job, to go to school, to do all of these things. By expanding healthcare and expanding Medicaid, we were expanding the promise of Olmsted, the Supreme Court Olmstead decision in so many other things. By doing these cuts, we're rolling back the clock.

It's just not good for our society. It doesn't help for people who want to be in the community and want to work. It's going backwards. Unfortunately, the administration is doing it or at least blaming it on the backs of people who are immigrants. That, in and of itself, has whole different other texture to it.

One of the things I pointed out to people is that if people are on Medicaid, traditional full scope Medicaid, or if they're on Medicaid expansion and they're an immigrant, they're likely an immigrant who is poor, an immigrant who is an older adult, or an immigrant who is disabled.

We're not just picking on immigrants, we're picking on poor people, we're picking on disabled people, we're picking on older adults when we're taking those people off of the rolls. Those are our friends. Those are our members of our community, members of our society. They're residents here in California.

PACHECO: I don't know who might want to take this one, but the budget reconciliation that was passed by the House, now known as the One Big Beautiful Bill Act, could you guys update us on the current status and where there's opportunity right now for advocacy and some pressure?

CLAUDIA CENTER: Sure. Now, as you know, it will go to the Senate. The Republicans are hoping to consider something on the Senate side before July 4th. They're trying to escalate in timing the process of considering the bill in the Senate so that they can push it to the floor quickly. They're trying to skip the usual committee process. It's really important that we try to raise our voices on the Senate side and try to slow things down and make things more transparent because these cuts are extremely unpopular the more people learn about them.

JACKSON: The piece that I think is really important that we haven't heard people talk a lot is those Medicare cuts, because we keep hearing about Medicaid or Medi-Cal and that piece of it. When the one big, ugly bill passed the House, one of the first things that I saw come out in a news story was that at the time the number was $500 billion, but that there'd be $500 billion in trigger cuts to Medicare.

The way that works on a trigger cut is that because the bill, overall, the spending is so much in it from a group of people, by the way, who said that they want to cut because they don't want to spend, is that because of the pay-as-you-go rule, it triggers cuts in other programs. It's just absolutely amazing. I think a lot of folks weren't paying attention to that and, unfortunately, we have to pay attention to it now.

Here in California, one of the things that we've been doing with Disability Rights California carrying across generations and some other groups and the DOnetwork is just doing educational legislative visits with key Republican Congress members who have high levels of enrollees in their districts like Congressman Ken Calvert, Congresswoman Young Kim, David Valadao in Central Valley. We had really good meetings, but at the end of the day, these folks voted for the big, ugly bill. That's really, really concerning after a lot of advocacy.

PACHECO: Thanks so much for that overview of what's happening at the federal level. I think while so many of our advocates in our community were working really hard on that, the May revise of the state of California budget came out with some scary cuts to IHSS and other proposals that may harm the disability community. Claudia, I don't know if you might give us an overview of what the state budget includes right now.

CENTER: There are a number of really concerning cuts on the state side from the governor's proposal. One of them that is really concerning is a reinstatement of the $2,000 Medi-Cal asset limit for people who rely on Medi-Cal, and that has been a real poverty rule for disabled people and older adults. I know countless disabled people who are directly affected by this proposed reinstatement of the $2,000 asset limit. We only recently removed the asset limit just a few years ago.

There's also a rule to cut IHSS overtime hours to 50 hours per week. That is devastating, particularly for relative caregivers who often do work longer hours to care for their family members. There's also some punitive measures toward undocumented Californians. It's worth pointing out that this is a feature of both the reconciliation bill as well as the California budget. In reconciliation, the federal side, there is a provision to penalize states.

There are about 14 states that provide Medicaid to undocumented immigrants and also immigrants that are documented but are not yet eligible for regular Medicaid. There's a penalty for these states, even though those states use their own dollars to cover these residents. There's a penalty from the feds toward states that is really outrageous because it's just cruel because it's state dollars.

Then, you turn over to the state side, and then there is these cuts to this same group of residents in California that enrollment into Medi-Cal would be frozen, that certain benefits would be cut for undocumented immigrants, such as IHSS and dental benefits. Even those folks who managed to get into Medi-Cal would have a $100 premium, which is just not at all affordable when you're talking about extremely low-income people in the program. It's really quite cruel all around.

SIGMOND: Thank you for that, Claudia and Ted. I want to bring you back in here because we've seen an amazing outpouring of advocacy in Sacramento in response to these cuts. FREED was there a few weeks ago, and the hearing rooms were packed. Actually, there had to be an overflow room because not everyone would fit. Could you talk more about this mobilization and any effects you are seeing or hoping for?

JACKSON: That's a really great question, Carl. If you really think into the cuts in the May Revise that Claudia just went through, it touches so many different people's types of lives. It's not just people with disabilities. It's not just older adults, either aging or aging into disability. It's also their family members. It's their caregivers. It's their neighbors. People are angry, and they want to come together.

There are several organizations that we have been working with, as I mentioned before, at The Disability Organizing Network, or The DO Network. We've been working with Disability Rights California on education meetings with legislators, but more importantly, with the long-term services and supports for all coalition based out of the Bay Area, although it is a statewide coalition run by Hand in Hand to do mobilization and get people to Sacramento. We've been supporting bus trips, carpools, anything we can.

We've also been working with Caring Across Generations, Parent Voices. Groups are just coming together. Right now, as we speak today, I'm helping in a coalition of several groups to support busses going to Sacramento from Marin County. Marin County is interesting. It's a very politically-active county, but everything stays in the county. I think we're about to hit a second bus on our signups for people who want to go to Sacramento. People have good reason to get there.

There's been a lot of coordination amongst the independent living centers and a lot of coordination amongst several different groups to make sure that the hearings were packed.

Now we're at the point where we're going up and doing rally days and press conferences and making sure we have earned media because we need to make sure that every Californian understands how devastating these cuts would be to all of us, to the whole community.

Something I said at the beginning is that risk of public health. If we have people in our community who don't have access to basic healthcare, then we have a public health issue. Also, the risk of people's independence and their freedom and ability to live in the community is really turning people on, and that ties into those IHSS hours cuts.

There's a couple of things I want to note, just on top of what Claudia said, is that those cuts in IHSS hours are also for travel hours. In my county of Marin County, 17% of our providers travel into our county to provide caregiving services for recipients or consumers, their clients. When you really look at our county and where they're coming from, we only have two bridges that come into the county, because we're really almost an island. We are a peninsula, and the smallest part of that peninsula is the land piece.

We have a freeway from the north, but none of them are really coming down from that freeway. They're paying tolls, they're going across bridges with traffic. They're coming in about a fifth of them to care for people in this county. If they're not going to be compensated for that time, then they're just not going to be able to do it anymore because they have families to feed as well, and therefore, the number of hours to be served and the quality of care will go down.

The other thing too that I know that I've heard from some of our legislative offices that people, I think, in Sacramento are really a bit steamed about this May Revise is the number of tax credits that the governor handed out. Just to give you an example, his May Revise cuts $700 million from the In-Home Support Services program. At the same time, the film industry's tax credit gets raised from $350 million to $700 million, the same amount of money. If they didn't have that tax credit, we would be 50% of the way there on the IHSS piece alone.

That has to be spoken about. That's why we're going to Sacramento. It's not just one tax credit. There's a lot of them. We also learned recently from the state that they don't actually do a study. As many studies as they do on us on the effectiveness of the programs for us, they don't actually do a study to see if tax credits yield more jobs and all those things that their proponents say that they do.

These are conscious choices that are made by our elected officials. We need to get to Sacramento, so we need to call them out and hold them accountable on these conscious choices that they're making.

SIGMOND: Thank you, Ted. I just want to circle back to the other part of my question about what does this mobilization mean in the long term politically? I know you have a long history with political activism. This mobilization happened fairly quickly. How can we capitalize on this even after the budget is approved?

JACKSON: This is a big question. It's a loaded question, and I love it. Every time we organize, we are building capacity for the future. Just to put simply, if I organize 10 people because of something at City Hall, I now have a list of 10 people who like to do this stuff. Then, the next time we go to the county, we add 15 people. Now we have 15 people. Every time we're doing this, we are building a larger team in building our capacity to be responsive, to protect the things that we hold dear in our community.

This mobilization came together quickly. I think it appears that way on the front side. Many of us have been meeting since January. That's important to note because there's a point in organizing where you're meeting, you're planning, you're speculating, you're exercising all of your organizing muscles and stuff like that, getting ready to get out of the gate and go. The moment that the gate opened was the May Revise, and then we said, "We got to go. We got to get out of the gate." We were working on that.

Because of the LTSS for All Coalition and the California Collaborative for LTSS and groups like that, people are constantly meeting all the time, but we're also building upon movements of the past. The recent ADAPT actions that we saw in Washington, DC, that were against these cuts on the federal side, those are all folks that have come together, got to know each other, got to work together before, back when they did this same thing in 2017 and in previous actions in the past.

As you do every action, every organizing, every campaign, you are building a community for the future so that when something happens, you can ring the alarm bell, people know what to do, and they can hop into action. We're really lucky in California to have such great disability advocates and advocates at allied organizations.

CENTER: This is Claudia. I'll just chime in that on the federal side, really, our options for fighting for civil rights and fighting for the funding for our critical programs, our options are people power and going to the courts. People power is really important right now on the federal side. We're really looking toward the July anniversary of the ADA and trying to make sure that we are out and loud and visible throughout July to fight for Medicaid, Medicare, education, all the things that we need to live in the community and to learn and thrive and work and have families and all of it.

One thing that people could consider doing if they're able is to go to Washington, DC, and join the National Council on Independent Livings rally on July 21st in Washington, DC. That will be an important rally for us all to look at, as well as local opportunities for similar rallies.

PACHECO: Well, thanks so much to both of you. I think that this has been a really good overview. As we're seeing these cuts both on the federal side and the state side, I think there is a deeper question that we should all be asking ourselves around what is really the messaging being sent about the value of people with disabilities in our society?

CENTER: This is Claudia. One message is that we are back to the survival of the fittest, that the people with money and the people who don't need a lot of healthcare, that those are the privileged people that are elevated, and people who need supports, who have disabilities, who are older, who are transgender, who are immigrants, people with multiple identities, those folks are at the bottom. That's kind of what the message is from my point of view.

JACKSON: The message that's being sent goes even beyond the cuts that are being proposed in DC or here in the state of California. Let's take a look at the restructuring of the federal government by the administration. Alongside all of this, there's a breakup of the Administration for Community Living, which brought together disability and aging, and made our services and our programs more successful than they ever have been before.

The initial proposal was to move disability over to the Administration for Children and Families, and to take aging programs and move them over to CMS, the Centers for Medicaid & Medicare Services. The message there alongside the cuts is we are infantilizing [chuckles] people with disabilities, and we are institutionalizing or putting older adults into a medical model. We are seeing seeds of institutionalization in both of those.

Through recent advocacy, they've actually changed course, they're not bringing back the ACL, but they've brought the two programs back together, and they've renamed ACF is the administration for children, families, and community.

Through advocacy, we've been able to get them to course correct, but we have to know at the end of the day that while they're trying to cut our healthcare, which I'll remind you is an accommodation, it's not just a medical model thing or a cure, it's an accommodation for independent living, that while they're trying to cut that, they are also cutting our space in the government and really inking us back towards institutionalization.

The other thing I want to bring up that is playing out that's going to be in the news soon is the Department of Education has put out their budget. For all of the IDEA funds, that's the Individuals with Disabilities Education Act funds that support the additional supports for special education, but all the supports for parents and families of people with disabilities, some of the work that my center does as a parent-training initiative, that money is now cut from the budget and moved into a block grant, and there's a lot of obscurity around what those funds are going to look like.

All of these restructurings are happening alongside these cuts, and people are having whiplash, like is this the '60s? Is this the '50s? The messages are not good.

SIGMOND: Then, something Carly and I were talking about this morning as we were getting ready for the show is about how the very people who are employed by independent living centers because, of course, 50% of our board and staff have to be people with disabilities. The very people, at least on the ILC side, fighting back against these cuts are some of the same people who will be directly impacted by these cuts if they go through. We are already seeing the psychological impact of that on our staff.

CENTER: Yes, I couldn't agree more. This is Claudia. Another example is the cuts to student loans and student aid and loan repayment programs. A lot of people who work at our advocacy organizations, including at CILs, rely on public service loan forgiveness and income-based repayment to manage their student loans, and both of those are targeted for cuts. These are programs that our organizations and advocates rely on.

JACKSON: There's a really good story, I don't know if you saw this story in CalMatters about Cynde Soto. As you know, The DO Network, The Disability Organizing Network brings together the 28 independent living centers in California and their systems change advocates or community organizers for community-organizing campaigns regionally and statewide. One of those advocates is a woman named Cynde Soto, who works at Communities Actively Living Independent and Free, which is the ILC in downtown Los Angeles.

Cynde is a quadriplegic. She's been working as an advocate for I think three decades. [chuckles] She's our longest serving member in The DO Network. She recently inherited $8,000. Just by inheriting some money, which isn't a whole lot of money in the grand scheme of things, if these asset limitations would go through, she would lose her healthcare. There's a CalMatter story on her. Check it out if you can see it.

We did a legislative meeting with her, and she, I remember, told the staff that if she lost her IHSS in her healthcare, she would last about two weeks. It's significant, and because of the Working Disabled program, which allows people to earn up to 250% over the poverty level, we have a lot of people who are working but very significantly disabled who also qualify for these benefits and could be really at risk if this asset limitation went through.

PACHECO: That was Ted Jackson, the Director of Public Policy and Community Engagement at the Marin Center for Independent Living. We also heard from Claudia Center, the Legal Director for the Disability Rights Education and Defense Fund.

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PACHECO: That does it for the show. Disability Rap is produced and edited by Carl Sigmond and Courtney Williams. You can go to our website, disabilityrap.org, to listen to past shows, read transcripts, and subscribe to the Disability Rap podcast. You can also subscribe to our podcast by searching Disability Rap on any of the major podcast platforms. We're brought to you by KVMR in partnership with FREED, and we're distributed by PRX, the Public Radio Exchange. I'm Carly Pacheco with Carl Sigmond for another edition of Disability Rap.