Links from the presentation:
Hey, everybody, welcome to Undivided Live. I'm Lindsay Crain, and I head the Content and Community teams here at Undivided. Undivided is a digital platform and service that helps families raising kids with disabilities. We simplify complex systems so families can access the care they need, and today is all about ensuring that we have systems to access, and for my visual description, I'm a female with a short brown bob, glasses and a navy blazer sitting in a green office with bookcases to my right. Thank you for being here today. We are thrilled to have with us Aaron Carruthers, the Executive Director for the State Council on Developmental Disabilities. He's going to share the latest Medicaid updates, how they could affect Californians with developmental disabilities, and how you can advocate to preserve the services your family relies on. We want to give a huge thanks and shout out to our incredible partner organizations for this event.
AbilityPath, Autism Society of Los Angeles, Autism Society of the San Francisco Bay Area, the California Down Syndrome Advocacy Coalition, Club 21, the Westside Family Resource and Empowerment Center, the Westside Regional Center, and of course, the State Council on Developmental Disabilities.
Thank you all. I know you worked extremely hard to ensure your communities had the chance to hear from Aaron today. We are all in this together and it will take us all to ensure our voices are heard, because we know that prospective federal changes around Medicaid funding are making many of us pay close attention. That's why we're here today. Medicaid programs allow our loved ones to survive, thrive, and be a part of their communities. While what's happening at the federal level might feel far away from what's happening in your everyday life right now, that might be changing soon.
Today is all about why telling your story deeply matters. So how do we do that? What's the latest? What's the potential timeline? How could this affect California programs including Regional Center, IHSS, in-home nursing, Self-Determination, early intervention, supported living, CCS and more? Aaron Carruthers is going to lead us through the most important points that we need to know. Aaron is the Executive Director of the State Council on Developmental Disabilities. He has worked in civil rights policy and programs for over 25 years, including as an appointee of two governors, for California's attorney general, and in the state Senate and Assembly. He's the parent... He's the child of parents with developmental and other disabilities, is a person with disabilities, and is the parent of a young man with disabilities.
Aaron recently told the California Health Report, and I quote, “This is a four alarm fire. This is all hands on deck. There's no messing around. The cuts are so big that it's going to impact everyone in the program. There's no way around it.”
So with that, let's get to it.
Lindsay, thank you so much for the invitation today. Thank you for having me. Thank you for prioritizing this conversation, and thank you to the many partners and organizations you put together to support this. It's really impressive. You're living up to the name of Undivided because together we cannot be broken. Hello everybody, I'm Aaron Carruthers. I'm the Executive Director of California's State Council on Developmental Disabilities. For a visual, I am a white, Caucasian male, gray hair, and I'm actually looking at my picture right now to describe myself. I've got some brown glasses. I have a blue floral shirt and a blue blazer. My background is a blue background with the State Council's logo and a picture of the State Council dome.
I'm joining you all from Sacramento today. I know some of you are from many different places. I think there's a big concentration of people from California, but there may be people from other states. Welcome. So glad you're here. Thinking through who's here, I know there's many family members. Welcome. So glad you're here. And very likely people with developmental or other disabilities. I'm so glad you're here. Possibly some providers.
So, so glad you're here. Whoever you are, whoever you came today, I'm glad you're here. So I have some slides to share, and I'm going to go ahead and get that started. So today's title is Telling Your Story, and that is about in the context of the 2025 proposed cuts to Medicaid funding and really what you can do about it. So I don't know how you may be feeling coming to this conversation. There's a lot of you here. It's fantastic.
I assume you're here because you want more information. You want to know what's happening, and you want to know what you can do. I'm glad for that because many people I've talked to are a little frayed, they're a little frozen, they're a little confused over what's happening, and we need to cut through that fear, cut through that freeze, to really come together and take some action. So today, I promise you, by the end of this, you will know more about what's going on, you will have a very clear idea of what you can do about it, and you can make the choice for yourself if that's something you want to do.
Now, if you don't get that by the end of today, you get your money back. Money back guarantee. Okay, that's a little bit of a joke, because I know everybody's here for free. This is free information we're giving away just for you, but, okay, a little bit of joke, but I promise you this will be good. If it's not, let me know. All right. Getting... jumping in with the slides, starting off with just a reminder. A reminder that the information that I'm going to be presenting today is solely to provide education and to raise awareness about the impact of potential proposals that could have on people with disabilities, developmental disabilities, their families, seniors, and people who use supports to live independently.
By sharing this information, the purpose is to help people be informed and prepared to engage in thoughtful dialog regarding proposed policies. This training is part of the State Council on Developmental Disabilities’ ongoing commitment to provide information to people so they can have access to needed community services, individualized supports, and other forms of assistance to promote their own self-determination, independence, productivity and community living. Same thing we've been doing for the last 55 years, and glad you're here today to do a little bit more of it. On that, here's the situation. In Washington DC., Congress has a plan to cut spending for the federal budget overall. The House... as you know, Congress is two entities. There's the Senate and the House. So the House has proposed 1.5 to... but really $2 trillion in spending cuts. From this, there's reason to believe that almost half would come from Medicaid funding and more cuts could come from Cal-Fresh.
So if this happens, what would it mean? It would mean much less money from Washington D.C. to California and other states for Medicaid and other programs that people with disabilities and older Californians need to live and to live independently. So that's the context. That's the big picture of why we're here.
And now let's get into some details. Here's what I'll cover today. What is Medicaid? I want to make sure we baseline. We're all starting with the same information. And what does Medicaid mean to me? Once we knew what Medicaid is and what it means to me, we'll move on to what is Congress' plan or what's currently proposed. After that, we'll look at what can you do. So let's start off with baselining, all the same information. What is Medicaid? Medicaid is a program in the United States funded by Congress that helps people pay for health care and other services. Health care, as we know, it's important for people with disabilities and seniors, because without it, without access to health care, without access to services we need, people with disabilities and seniors will live worse lives. It's a fact. It's plain and simple. What's also a fact, and plain and simple, is that health care costs a lot of money, so many people need government programs to help us pay for health care and to stay healthy.
Now, any program that helps people pay for health care is called health insurance, so at its core, Medicaid is a health insurance program. This one's just by the US government. Now, to pay for Medicaid programs, the federal government shares the cost with each state. This is called the federal match. For most of the program, say for Regional Center services, state puts in a dollar, federal government puts in $0.50. So without this federal match, states would not have enough money for their Medicaid programs. If this federal promise comes back, the states get less money. States would have to make some decisions. They could raise taxes to pay for the money they weren't... aren't getting any more from the federal government, or they could find the money from somewhere else in their budget. They could take services away from people, or just not have as many services. So fewer people served, or people who are served have less services to benefit from. That's the state... That's the federal role. That's the state's role. Now let's get into some details about what does Medicaid mean to me.
So looking at California overall, Medicaid is one word, but it funds many different programs. In fact, 43% of Californians are in programs funded by Medicaid dollars, so that's about 17 million Californians. And if we look at the many different programs, we can see where that money goes. The biggest portion goes to different Medi-Cal programs, whether that's the medical coverage, the dental coverage, and that's about 14.5 million Californians. There are additionally, a separate program, about 1.8 million Californians in Covered California. Now, that's health insurance for working people who don't receive health insurance through their employers. The federal government, the state government subsidizes the cost, meaning that they... the government pays for part of the actual cost for this service, this health insurance, and this is also known as the Affordable Care Act across the country. Some people have nicknamed this Obamacare.
In California, we call it Covered California. There's 1.4 million new mothers and babies who get nutrition, nutrition information, formula, and other help through WIC, W-I-C, which is Women, Infants and Children. Another 830,000 people receiving support to live in their homes independently through in-home supportive services, or IHSS, 488,000 people with developmental disabilities supported through Regional Centers, and about 59,000 foster youth.
So the numbers are big, but the takeaway on this slide is one word, Medicaid, actually funds many, many different programs within California, and some of these, you may be enrolled in. So we know what Medicaid is. We know what it means to us. Let's move on to Congress' proposals. So there is a proposal, again, as I stated, to cut funding over the federal budget overall. On February 25th of this year, the House in Congress voted on a plan to do three things: extend $4.5 trillion in tax cuts, raise the debt ceiling by $4 trillion, and cut a minimum of 1.5, but really a goal of $2 trillion from federal spending.
Now, these numbers are for the next ten years, and this vote was for something called a Budget Resolution. The Budget Resolution is the first step in the Budget Reconciliation process. New words. I'm telling you, by the end of this, you're going to be an expert. You're going to be a pro. Let's dig into a little bit about what this budget reconciliation process means. So budget reconciliation, what is it and why do they want to use it? In short, the reconciliation is a procedural shortcut. It can be used to do three things. It can be used to raise or lower revenues, raise or lower expenditures, raise or lower the debt, or how much the federal government borrows. So we saw that in the vote on February 25th. They voted to extend tax cuts that would cost a total of 4.5 trillion, or 4.5 trillion fewer dollars brought in, so that lowers revenues. They voted to lower the number of the amount of expenditures, how much they're spending on different federal programs and benefits and departments by 1.5, but really, $2 trillion is the goal.
And then they voted to increase the national debt ceiling, or the amount that the federal government can borrow by $4 trillion. So that's what reconciliation can do, those three things, and that's how it's been in process through the vote in the House on February 25th. But why do they want to use this? Why do they want to use reconciliation? Well, it's quicker than the typical budget process or a budget bill. There aren't hearings. There's really not any briefings. There's very limited debate and limited amendments that can happen on the floor. Here's the big reason. It's easier to pass. So the House... Again, Congress is the Senate and the House. The House, to pass something, you need a simple majority vote, majority of the members, and right now that's 218 members. So anything can pass the House with a majority, but in the Senate you have a higher threshold for many things, including the budget bill. In there, they need 60% to pass something. However, this reconciliation process is different and in this one they would need 50%, which is 51 out of 100 senators or 50 senators plus the vice president.
So these are the reasons they want to use this process, because they would not need the 60 votes needed for the regular budget bill. Now, here's some things I've heard since the vote on February 25th. That vote, it's only a procedural vote. It just lets the discussion continue. This is technically true, but let's look a little bit deeper. The process for reconciliation is a two step process.
First, we talked about step one, Budget Resolution. This resolution sets the goals and sets the targets for spending cuts. Step two is the Budget Reconciliation. Now this is the bill that has the details on the spending cuts. Now the Reconciliation, step two, has to meet the targets set in the Resolution, step one. So while it's technically true, this is a procedural vote and it certainly lets the discussion continue, a vote for step one, the Resolution, binds what's in step two, the Budget Reconciliation. Let's look at another. What else has been said since the February 25th vote? It's been said the resolution, that vote, that what we voted on doesn't say Medicaid anywhere in it. This is technically true, but let's take a little bit... let's look a little bit deeper. When they voted to create targets of 1.5, but really $2 trillion over the next ten years, it also... the House gave some instructions to its committees.
One committee in particular, it told the House... the House Committee on Energy and Commerce, that committee, if this resolution is adopted, you're going to have to cut 880 billion from the programs that are under your jurisdiction and authority. Now, this visual from The New York Times helps us see what does that committee oversee. We're going to look in boxes. We're going to look in terms of boxes, not relatively specific numbers. We can see it covers Medicaid, it covers Medicare and it covers other programs. We can also see by the size of the boxes, proportionately how much 880 billion is from that committee's authority. So looking at the boxes, we can see even if this committee cut every single other thing it has authority for, it would still need to cut something for Medicaid dollars or Medicare dollars.
There's long been statements, “Nobody's going to touch Medicare,” so then something would have to come from Medicaid. So while this resolution doesn't say Medicaid anywhere in it, that is technically true, the reality is it sets up the instructions. In some ways, backed themselves into a corner where they would have to cut Medicaid. Now if this happens, and it hasn't happened, but if this happens, that committee could act in a way that they're not really calling it a cut. They're calling it... They're introducing some policy proposals. So, for example, that House Committee could impose work requirements, it could create per capita caps, it could issue block grants to states, rather than the typical way that Medicaid funding is provided. It could reduce the matching rate for Covered California or the Affordable Care Act or Obamacare. That one has a pretty high match. So I said Regional Centers are $1 from the state and $0.50 from the federal government. Obamacare is a little bit higher. The Covered California is $1 from the state and $0.90 from federal government, so maybe they reduce their matching rate for that program. Whatever they pursue and whatever they call it, a cut by any other name is still a cut, and here's how we know.
Each of these ideas has a dollar tag assigned to it. Work requirements, $100 billion per capita caps. We can go through them. So while it may be stated as a policy goal, the policy goal... the policy is not the goal, it's the dollars. All right, bottom line, if this happens, and it hasn't, it would mean states would get much less money to pay for Medicaid services. Now there's other things to keep in mind. Everything I've talked about so far out of Congress, the Senate and the House, is the House's proposal. The Senate, they have their own ideas. They passed a resolution before the House did that would put a goal of cutting 320 billion out of the entire federal budget over the next ten years. Now their 320 billion is much lower than the House’s 1.2, but really five... 1.5, but really $2 trillion in spending cuts. Their ideas and what we know right now are likely going to change because they have to get in alignment and come to agreement.
So that's the other thing to know. These ideas likely could change unless the Senate just adopts the House's entire version or the House adopts the Senate version. Now, I just want to pause and let you know what I'm hearing as I talk to the community. Some of the feedback I get: “This isn't going to happen, because they would never do this to us,” or, “Hey, you know, this is going to happen to immigrants. That's really who they're talking about. It's not going to happen to us.”
The reality is the House voted on this. It's in print. It's real. This is... these are the goals, and the cuts are so big that it's going to happen to everyone in these programs. There's... The dollars are too huge for anybody to just apply it only to one group and not the other. Another thing I'm hearing is that the president said to not touch Medicaid except for fraud, waste, and abuse, and so he's going to protect Medicaid. The president said this. There's a challenge though, a difficulty in the president... the Congress being able to follow through on what the president said, which is cutting 2 trillion can't be done without cutting Medicaid or Medicare. This is the opinion and the conclusion by the nonpartisan Congressional Budget Office on March 25th of this year.
The nonpartisan Congressional Budget Office is an entity that exists, created by Congress for Congress to advise Congress on different ideas and proposals. So when there's... the resolution the House passed on February 25th went to the Congressional Budget Office. They scored it. That's the term used, ‘scored it,’ and came back and said, if you're going to meet your goal of cutting $2 trillion, there's no way to do it in the federal budget with everything that's either protected, can't touch, you said you aren't going to touch, without cutting Medicaid or Medicare. So even though the president said don't touch Medicare... Medicaid, Congress' own advisers say we don't see how you're going to reach your goals without cutting either Medicaid or Medicare, and you've said Medicare is not on the table. That leaves Medicaid. What's the timeline for the resolution specifically? As I said in February 21st, the Senate approved their version of a resolution. Then on February 25th, the House approved their version of the resolution. So looking at Congress’ calendar, they are meeting right now to agree on one resolution, because the Senate and the House have to pass identical resolutions, so even if the Senate’s version says 320 billion and the House’s version says 1.5, but really $2 trillion, they have to be identical.
They have to find some way to bring them together. Now when one passes it, they send it to the other, so the House has the Senate's version, the Senate has the House's version, but in reality, all expectations are that the Senate will take up the House's version and that will be the negotiating document. We don't know if they'll take it up completely as passed or if they will change it in some way, but they may make changes that lead to a conference committee where they have to agree on a resolution. If they do agree to an identical approach on what revenues to raise or lower, expenditures to raise or lower, debt to raise or lower when they come back on identical targets, then it comes back to Congress as instructions, so then they're bound by the instructions. Keep in mind this one doesn't go to the president for a vote.
Let's break down this process even further. You're going to be experts. You're getting expert masterclasses right now on this resolution reconciliation process. And really it's an eight step process, so we've talked about steps one and two. Senate passes their version, House passes theirs. Senate, step three, they need to get to agreement. When the agreement comes back, step four, as instructions, they have to meet their goals and targets they set for themselves in the resolution. And then five and six, Senate or Assembly, Senate or the House have to pass their version of reconciliation.
Again, this is where we start to see the specific proposals of what would be cut for spending reductions. Step seven, they got to agree. When they agree and they vote on it, it goes to the president in step eight for a signature or a veto. Okay. Those are all eight steps, and here's why it matters. Here's why it matters. Out of all the talk, out of all the news, let's cut through it. Here's exactly where we are. We are here. We are between steps. We've finished one and two and have not completed step three, and this matters because there's a long way to go in this process, which means there are many opportunities for advocacy.
Anything can happen at any step in this process, meaning the proposals could change in any way, could stop, could not proceed. It's an opportunity. All right. That's Congress's idea. That's their proposal, but what can you do about it? What can you do about it? What can I do about it? What can each of us do about it? What you can do is to tell your story, and your Medicaid story is very important to tell because your representatives in Congress, and again, this is every... this is in DC, the conversations focused in DC right now. They need to know how Medicaid helps support you and your family, what it would mean to your life if the services and supports are reduced or stopped.
Now if you remember anything from this presentation, if you remember anything from this time we're spending together, remember the next thing I'm going to say. Your lived experience makes you an expert. You know more about these programs and how they work and how they help than anybody, and so your voice is important. Your voice is helpful to your representatives in Congress because, honestly, members in Congress have a lot of views, a lot of responsibilities, a lot of priorities. You may be introducing your representative to disability issues. They may be focused on primarily the tax structure or the federal budget, or the borders or the military or wars overseas. There's a lot of responsibilities members of Congress have, so they may not have been paying too much attention to disability issues, so your voice is important because you may be that... introducing them to it, and remember, you're an expert.
You're also helping your representative understand the impact of their decisions. Again, it's one word in D.C. Medicaid. It's one number. 880 billion. Doesn't quite translate into all of the different programs in California that it funds. Also, elected officials remember the people they meet. They remember their constituents. They remember their stories. When they're back in Washington D.C., they got the vote in front of them. One word, Medicaid, one number, 880 billion, it gets a little depersonalized.
Your story, your voice, brings back in that moment that’s so important, which is that moment to vote, but how do you do it? How do you tell your story? Telling your Medicaid story is really easy because it's just talking about your life. So start off, “My name is and I'm your constituent. I live in ,” You tell them which city or county you live in in their district. They want to know they're talking to someone. They represent their own constituent. “I'm a person...” Fill in the blank. “I'm a person with a disability, a senior, a family member, care provider.” Whatever your connection to this issue is, make it clear.
Let them know and you tell... Then you tell them the good stuff. “Here's what my life is like now because of Medicaid funded programs I live in a home, in the community, or I live with my family, or I live with roommates, and I'm not in an institution. I work, I volunteer, I go to school, I go to church, I have hobbies, have pets...” Whatever is good in your life, you share that. Then you make the connection on how Medicaid funded programs make this possible, and the way you do this is just talk about the services and the supports you receive. So I... whatever it is, I... maybe I need help from people paid by Medicaid programs to get me out of bed, get my medications, to help me live independently. So I just described...
Reading between the lines I just described independent living services and supported living services. I don't call them that. No one's really interested in what the name of the program is. They want to know your experience and how it impacts your life. So that's what you do. You talk about the programs you receive, but not by name, but by benefit. And then you just really make the point. “Cutting Medicaid funding will mean I can't live my life as I do now.”
After you have prepared and thought through how to tell your story, who do you tell your story to? All of this conversation right now is happening in Washington D.C. These are proposals by Congress, and the Congress is the Senate and the House of Representatives. Everybody here, you, me, everybody else on the screen, we each have two state senators in Washington D.C.... I'm sorry, two senators from our state in Washington D.C., and one member of the House of Representatives. And it's very easy to find who yours are because you can follow this link. If we could drop that link in the chat, that would be very helpful. This link is is easy.
You click on it, you put in your home address and it'll tell you who your members, who represents you in the U.S. Senate and in the House of Representatives. If you are from California, everybody here from California has the same U.S. senators, Schiff and Padilla, but it's our representative who's going to be different depending upon where we live in California, but find out who yours is and right now, most of the discussion is happening with members of the House of Representatives. So the gold standard... So once you tell... You got your story prepared and you know who to talk to, what do you do then?
Well, you reach out, you contact your member of Congress. The gold standard, the best way to do it is really face-to-face in person or by Zoom. And that's really just setting up a meeting with your House of Representatives’ office. They have offices in Washington D.C., and they have offices near you. If you're going to start, start with the one near you. They... in their district, that's where... those offices exist to hear from their constituents, and you can set up an appointment to meet with your legislator, your member of Congress, or possibly they'll meet with the staff. Sometimes their preference will be in person, sometimes it'll be by Zoom.
It's good however it is, and you don't have to go alone. You can bring... If it's you and maybe two or three other families, it's a group. You're telling your story together and you have very good face time. This is the gold standard on how to have contact, but maybe you don't have the time, maybe you're not comfortable with that, so here's another option. You can call your legislator’s office. You call them, tell them your story, tell them how Medicaid cuts will affect you and your family, and the third way is to write a letter. We'll get to that in a second. I got a tool to help you out with that. Let's wait on that. So let's assume you're going to go with the gold standard.
You're going to... you know who your member of Congress is and you're going to meet with them. Let me give you some tips on how to do that meeting. First you call the office and you just simply ask for an appointment and tell them what you want to meet about. Tell them the topic: Medicaid funding. Before you go, you want to prepare, know what you're going to say, use that tool that we dropped in there, the fillable tool, to prepare your thoughts and organize. When you have the meeting, whether it's virtual or in=person, just be on time, but realize you may have to wait. This isn't personal. It's not you, but once you're there, you're there on time, you may have to wait for your representative or their staff.
Once you meet with them, once they come online, just introduce yourself and start on a positive note. Thank them. Thank them for something that they're doing. You deeply appreciate their support of people with disabilities or people with developmental disabilities. Members in Congress do support older Californians, people with disabilities, and you can acknowledge that and you can start off there. Once you do, stay focused. Stay focused on one topic. There'll be many things happening in the news, many things drawing your attention, but you're there to talk about one thing: your Medicaid story.
So [inadubile] talk about and talk about it. Keep your part short. If you come with another family, two or three families each, that'll give each person about five minutes to tell their story. Five minutes is a long time if you organize it, but keep your part, each person's part short. When you're done, just be ready to answer any questions they may have, and you can... as it's wrapping up, you can ask how long it'll take.
Say you're meeting with the staff and not the member directly. You can... It's okay to ask how long it'll take for your feedback that you're sharing today to get to the representative, because you want to know that it is getting there. When you're over, just end them by thanking them for their time. Thank them for considering to protect Medicaid. Start on a positive, end on a positive. That's how to do a meeting. Last thoughts, last thoughts. This really is a moment to say what is true and what is not. You are the proof. You are the constituent. You are why Medicaid matters and undivided, we are strong. Stay focused. We stay clear. We stay undivided and this will change the outcome.
Thank you so much, Aaron. I mean we are so appreciative because it is incredibly hard to sit around and feel like things are happening around us that could shift our entire lives, and if we don't know what to do, it feels like we're just waiting for a hammer to drop, so thank you for giving us a call to action. Find your legislators, keep calling, and thank you... so thank you for giving us those tools.
We hope once there are definitive answers, that you will come back and break down exactly what that means for our community, and then we go from there, because here at Undivided, and I know all of our partner organizations as well, we have teams watching around the clock for updates. You don't have to figure this out alone. Thank you again to Aaron, the State Council, all of our partner organizations, and all of you for being here today. Let's work together and ensure we are very, very hard to ignore.
Like Aaron said, it is all hands on deck, so we'll see you out there. Goodbye for now.
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