Vermont Legislature SmartTranscripts:

[Edye Graning (Vice Chair)]: Thanks for greeting.

[Michael Marcotte (Chair)]: Good afternoon, everyone. This is the Vermont House Committee on Commerce and Economic Development. It is Tuesday, 01/13/2026 at 01:04 noon. And so to start our afternoon off, we will be talking about the ABLE bill that we had passed years ago. Bill, thank you for joining us. I understand that this all came because of you.

[Phil (ABLE Act advocate and parent)]: Well, that would be an exaggeration. I was one of, and I'll tell you all about the

[Michael Marcotte (Chair)]: other parties that were involved. Remember when Treasurer Pierce came to, well, the gentleman that was here was my chair, I was vice chair at the time, came to us with that proposal, and we jumped on it,

[Phil (ABLE Act advocate and parent)]: and we did. Which, good for you, because not everybody did, but that's part of the story that I'm going to tell.

[Michael Marcotte (Chair)]: Great. Well, welcome. Thank you for joining us.

[Phil (ABLE Act advocate and parent)]: Thank you. So let me start by explaining the picture behind me. That's my son. Ethan is 27 years old, still old and had Down syndrome. When he was two, my wife looked at me and said, the world's not good enough for him. You need to go help fix And I said, Okay, you know what that means. I have anything. And she said, no, go ahead. So she's had to put up without me more often than not during the tenure of trying to get this bill passed. I then joined the board of the local Down Syndrome Association. We changed our name. We did some other things. The president resigned because he didn't want to put a person with Down syndrome on the board, believe it or not. Yeah, that's where I look. And so I suddenly found myself president. And we had formed a legislative affairs committee, a lobbying group, because I brought five people into my house, my kitchen table, whose names I will explain in a minute. So, the five of us are sitting at the kitchen table, and there's four of us who've worked on Capitol Hill or in some other function. I had been a lobbyist for Viacom. I had run a congressional campaign in California. I did a bunch of things. I thought I wanted to be in politics when I got out of college. I wonder I didn't. So we got somebody who works for the Letter Carriers Association, and a woman is a very prominent lobbyist for environmental issues in DC. And a woman who had been legislative director to a congressman from Florida, and Steve Beck, who had never done any of this stuff but was intrigued. So we're sitting there, and we're trying to figure out what we're gonna do. Because we could do a lot of different things. There's a lot of issues out there. What could there be? Rick Hodges raises his hand. And this is literally how this whole thing gets started. He looks at us. He says, it is ridiculous that I can save all the money that I need to for my daughter without Down syndrome. But the one with, I can't save a dime. And we all looked at him and said, good one. Let's tackle that. And so we started to lay out what a bill might look like, what logically we would want in something. And Jen who was the former legislative director, looked at us and she said, well, the chief of staff to a congressman down the block from me, John, he babysits my cats. His kids come and babysit my cats. So maybe his congressman will be interested. And that's how we figured out how to get our first sponsor. Andrew Crenshaw from Jacksonville, Florida. Was that. That was it. This is Northern Virginia for you where you can't swing a dead cat without hitting a lobbyist or a member of Congress. So, it makes some sense for those of us who live there, but I love that story because it's how did we get started at random. So, the one person at the table, as I mentioned, that the bill is actually named after was the guy who had no experience. So that's Steve. That's his family, just a while before the bill got passed. So Steve had no experience. He'd never been to visit a member of Congress. He'd never done anything. So the first time we went to see Andrew Crenshaw to talk to him about this bill, Steve wouldn't talk. He didn't say a word. He was too nervous. He was red in the face. He just had no experience with this. As much as he liked to talk about politics, he'd never done this before. Right? I'm sure you guys get those people

[David "Dave" Bosch (Member)]: who come to visit you, right? They think that this is

[Phil (ABLE Act advocate and parent)]: that you're not people somehow because of all. And so and Steve and so, of course, after that meeting, would conceive. I said, you're in charge of the committee now. And he said, Why? I said, Because I don't want a bunch of people who do this all the time to do the same thing everybody else does. So that was Steve. He, by the way, when they named the bill after him, I rolled my eyes. He would hate that with a desperate passion. He would have fought it for years if they tried to do it while he's alive. But he passed away. His wife didn't want to put up the fight, so the bill gets named after Steve. The other three people I've mentioned in the room were tremendously helpful in formulating this, and we'll get to what our theory was about that in a few minutes. Congressman Cranshaw proved to be a godsend because we walked in to meet with him and his chief of staff, and they said, come on, this exists already. This is not new. We looked at him and said, it doesn't. He said, well, I need to check with the congressional research service. So he sends a request for a report for congressional research service. Does this exist? Shortest report he ever got, he told us, it was one word. No. So, there's nothing. He said, Okay, let's go. So, we started formulating what this bill might look like. Our original draft had things in common with where the bill ended up. But I'm sure, as you all are too used to, you start with a theory and it ends up being something different, for good or bad. We wrote the bill with originally a zero five million dollars donation limit. It was IRA based, not five twenty nine based. That five twenty nine came later. Once you put the money in, you could grow as much as you needed. We started talking about this, Rick said, it needs to be enough money for somebody to literally run their life with. Yes, they'll get Medicaid, so they have some health insurance. Yes, they can collect Social Security. But this needs to be how they pay for their lives. At that point, Social Security SSI was $700 and some odd a month, which is another part of the story that I'll get to. So we didn't write in a Medicaid payback. We specifically took that out, knowing we might have to negotiate it back in. We specifically said it has to be able to pay for anything. One congressman once said to me, what if they want to buy a yacht? I said, then they'll live on a yacht. Nobody's going to buy a yacht with this senator. We're talking about a few $100,000. But Okay, it is a ridiculous question. We wanted it written so it would be transferrable between individuals. Because as sad as it is to say, people with disabilities don't always live full lives. And if they die early, as lots of my friends have gone through I've had friends lose their kids at 16, 19, 25 then our theory was there'd be money there. Where does it go? We want it fully transferable. It can go to anybody, as long as they have a disability. So, you're their best friend, a long distant cousin, a person you pick at random, I don't care, as long as the money gets used for the same purpose. It was our theory. And our last theory, and we even went to the banks to ask how to help with this. We had the advantage of the chief lobbyist for, at the time, Bank of America out of Charlotte. We went to him and said, what would the banks think of this? And of course, we got, oh, they're going love this. You're not going to. This is another way to get money and put it in an account and charge people a fee, even if it's minor. Great. So we had to talk about fees. So we came up with this with Congressman Crenshaw. We listed it all out. He sent it off to be drafted for the first time. And it wasn't called ABLE then. They came up with some other acronym that's lost in the annals of history. I don't know. We then formulated the strategy we wanted to use. Now, we were a group of people who didn't think like classic people on Capitol Hill. So our strategy was not anything the disability community had ever heard before. Number one, we didn't want senior members of Congress on the bill until we got there. We didn't want this to be a leadership bill. This was going to be a junior level bill. Crenshaw was a good example. He was a mid range member of the budget committee at that time. And we felt like if we went up to Speaker of the House or Majority Leader level, we were going get caught in politics we didn't want to be in. So, we were going to go get all the junior folks and force the senior folks to pay attention to us. That actually worked. I'll explain how. We wanted to literally overwhelm the leadership so they couldn't ignore it. Controversial strategy, a bunch of people in the disability community said, No, no, no, you just have to go to Kennedy and argue. And we didn't. Kennedy, his staff, told us not to come to it. They got it. So, we were gunning for as much money as possible and as much breadth in stuff we were looking for as possible. So, we started with a bill we didn't know whether we could get passed. Because we knew we were going have to give things away. But my negotiation tactic is start with the sun, moon, and the stars, and then give it up. Too often, the disability community, and they still do it, will come in with, Well, can't you give me this tiny little bit, please? We were not playing that game. We wanted the whole thing. We wanted investment options, and that's something we'll talk about at the end of my conversation today. We were adamant that individuals with disabilities be able to manage their own money. That didn't happen. Something that needs to get it can be fixed. I've already talked to the church office here in Vermont about it. It takes some work, but it can be fixed. Again, pay for anything. They started talking about, well, on this and limitations on that. Cannot predict what the person with the disability needs. Not going to try. If we limit it to certain things, somebody's going to come along who desperately needs it for something else, and we've solved nothing. It's their problem. You won't do that with any other account. You don't say for a $5.29 plan, you can only spend it on X college. So, it doesn't make any sense. We did that. We had to change the conversation because we kept getting told from the beginning, you can't do this, nobody's going to back it because they get Medicaid and they get Social Security. So nobody's let them have any money. We've tried this before, which they hadn't, it turned out. And we were adamant that that was not going to stick. That that was a ridiculous premise unto itself. That a little bit of Social Security and a Medicaid program that nobody thinks is sufficient means you shouldn't have any money. You should be dirt poor for the rest of your life. It still doesn't make any sense to me how people can think that, but they do. We insisted on a bipartisan approach. Francois was a Republican, a pretty hardcore one. But the first person he went to to get a co sponsorship was a very liberal Democrat who's not in on this, but I'm going to explain where that came from. Really, the whole point of this exercise that we talk about every single time we do together was we were going to build enough momentum that it took on a life of its own. And it had a brand and it was going to go. So, that was our strategy. And we stuck to it pretty well. We didn't get everything we wanted, but we got a lot, as you can tell. I like to tell the stories of some of the people that we talked to, to show you the absurdity of what we were facing. So, the first one is, we were in the chair of the Senate Finance Committee's office talking to his staff for the first time. It's Max Baucus from Lutland. And we had six people in the room, including a woman in a wheelchair. She invited herself to the meeting because she had a disability, and she wanted to hear about this. So we're sitting there explaining the bill. And one of the staffers who was assigned from the Social Security Administration looked at us and said, There's no need for this. She said, Oh, I could live on 700 a month. And I looked and I said, You live in Washington, D. C, and you think you can live on $700 a month? And she started to get adamant about it. I had health insurance, sure I could do that. You couldn't rent a third bedroom in a house for $700 a month. It was the most absurd thing. And every person's colleagues are looking me like it's crazy. I'm getting mad. Because there's a rule in my house. You don't mess with Ethan and you don't mess with people like Ethan. Phil will kill you. He will go to jail for that. So, I started to get red in the face and started to get angry. And I said, Prove it. I said, I will put up the money now for three months. Let's see you do it. And the woman sitting next to me, was Madeline, who I'll tell you about in a few minutes, grabbed my leg and was like, Phil, you need to come down. Because I was ready to lose it on this woman because the absurdity of some of the things we were hearing was ridiculous. The next story is from John Boehner's staff on the other side of the aisle. So we discovered that one of John Boehner staffers had a kid with Down syndrome. And we're like, Oh, good. This will help us. He was speaker at the time. He would be speaker later. Okay. We go and we sit down with him, and he explains to us that his daughter with Down syndrome is not like any other child with Down syndrome. She doesn't need any help. So he doesn't understand why anybody else does. She's two. He has no idea what he's in for. And he's sitting there talking to a whole group of parents of kids with disabilities. Because at this point, we had autism involved and everybody else, fragile X and all these other groups. And he says this out loud. It's the last time we ever talked to him. And interestingly, Bayner didn't listen to him on this issue. He was convinced that his daughter was so much smarter than everybody else that she would never need an IEP, she would never need anything. Just, Okay. I always wanted to find out what happened to her, because that's not how that works. So that's Rick, which I should have shown you earlier. That's Andrew Crenshaw. And that's Kendrick Meek. So, this is the next important part of the story. So, Crenshaw drafts the bill. And he says to us, I work a lot with Congressman Meek. I'd like to get him as the second sponsor. Okay. We're wondering why he's even asking us this question. Because, of course, you can go get whoever you want. And this fits our strategy perfectly, if you think about it. I've got a fairly conservative budget committee member, and then I've got one of the most liberal members of the House coming from Florida. And he goes to Meek, and Meek says, Oh, I really like that. He puts his name on it, right there on the spot. So what happens? I've now got a chunk of the budget committee. Crenshaw is friends with Dave Camp, who's the chair of the Ways and Means Committee. And Camp says, I want this. So I get three more members of the Ways and Means Committee to join. And the entire Black Caucus, because Kendrick Meek put his name on it. People do not give that man enough credit. They don't talk about him like this. But that was the moment that the game changed. The story goes like this: The community is being a problem as we're coming up with this bill and doing this. The disability community, there's a chunk of it that's onboard immediately Autism Speaks, Fragile X, others. Autism Speaks was there from day one, for example. Others were not, in surprising ways. So, we go to a meeting with the autism community, because Autism Speaks takes us there. We're explaining the bill, and this lobbyist for the Autism Society of America looks at us and says, I don't even know Arberto. That's a quote. This is not going anywhere politically. It's impossible. I don't understand why you think that they're going to accept our people having money. And I looked at her and I said, I have 26 co sponsors. I have four members of the Ways and Means Committee. I have entire Black Caucus. What do you have? That's a quote. And she got mad at me. But one of her colleagues looked at her and said, yeah, answer the question. What do you have? She was like, Well, I didn't realize this bill was that serious. We kept running into that. So then we go to the arc of The United States. And they tell us, No. Politically, don't think this is viable. This is not a priority for us. We don't think you should be doing this. And I looked at the woman who told me this, and I said, Okay, you've given me a whole lot of reasons. She spewed a whole lot of nonsense at me, assuming I didn't know what I was talking. And I said, Okay, you've given me reasons not to work on the bill, not to co sponsor it. Why won't you co sponsor? And she couldn't give me an answer. She just said, well, we won't. And they didn't. They were the last major disability group to get on, which I'm still flabbergasted by to this day. So, the community was somewhat there. Eventually, got on. Eventually, ARC was a huge sponsor and sent their board around to talk to people, etcetera. But it took way more work than it should have. There's lots of lessons there that we can get into some other time. But at that point, we decided we needed to go to certain other members of the disability community that we were worried about, but we actually got very positive reactions to. That there is Madeleine Will. That's George Will's ex wife. She was Assistant Secretary of Education under Ronald Reagan. Just as a history lesson, when Ronald Reagan tried to rearrange the way Medicaid was funded through block grants, a bunch of his wealthy donors showed up in the White House and told him absolutely not, and that they wouldn't back him again if he did it. Famous in the disability community. So he backed off. In order to give them something, to convince them he was for real, to give some secretary a slot to Madeleine Will. And she wrote most of Idea while she was there. So we brought her in, she was a lobbyist for the National Down Syndrome Society, we sat her down. She came in with David Hoppe, who David was on the board of National Down Syndrome Society, had a kid with Down syndrome, and was Chief of Staff to somebody named Trent Law, who was the majority leader. And so they came in, we told them about the bill, we were anticipating a, well, I don't know, What's it gonna be? We thought we'd get some of the similar answers we got to the for the rest of the community. And Madeline said, oh, no. No. We're in. This will be our number one priority from here forward. And David said, do whatever you need. And we were flabbergasted because we'd run into so many problems, but here we were. And Madeline was one of the leaders in getting this done from the very beginning. Because you know everybody. She was tight with Kennedy. She was tight with every major Republican. Her son, John, gave us access to George. And that meant there were certain politicians George could get us into. He wrote an article about it. All this sort of thing that gave us some attention. The bigger part of what we learned after we started moving through this, and we got the community involved, we started to figure out what strategies to work, was bringing self advocates. Bringing them to meetings changed the game instantly, every time we did it. So those two of them right there, for anybody who's old enough to remember, there was a show called Life Goes On with a kid named Corky. That's Chris Burke. He is Corky. And that's the daughter of a board member of NDSS. And that's Inder Crenshaw there, that's Pete Sessions on the other side. Pete has a son with Down syndrome, Alex. And we learned that bringing them into a room changed the conversation in a way that the community didn't yet understand, because they had to be taken seriously. Think about the idea of one of the there were some of the politicians who tried to talk down to them or whatnot, and that went, as you would expect, horribly. And you could tell it was the older ones who, no offense to those of us who are old, you can see a lot gray hair in me so I could say this now, that that was a problem. But it didn't turn out to be because staffers responded to them, the politicians themselves responded to them. We sent them around to visit their members of Congress. And lots of them weren't used to this because they might show up at a meeting back in the district, but they'd just be there. Nobody put them forward and said, they're going to tell you why this is important to them. And then we met Kathy McMorris Rogers. Kathy was a member from Washington until recently. She was in leadership on the Republican side. I was sitting, reading the Washington Post one day, and was always a Monday. And there was an announcement from her that she had a son with Down syndrome. She'd just given birth to him. She'd just found out he had Down syndrome. And she expected privacy during this time. Well, I didn't give her that. I sent her a letter saying, Hey, there's not really a Down syndrome organisation in DC, but I'm right outside DC in Northern Virginia. Let me come in and talk to you about what you're up against. That was on Monday. I mailed it Monday morning. I had a call Wednesday from the scheduler and was in her office on Thursday. Nobody took these issues more seriously than Kathy did from that moment forward. And that was cold. So, he's 17 now. He doesn't look anything like she became one of our key leaders. And again, this was not who the community was used to going to. They were used to the hardcore liberals, and that's who they went to. And when Kathy got on board and we were starting to get names on this, she looked at the list of names and said, How the hell did you do this? Because we had all the way to the left, all the way to the right, and everything in between on this. By this point, we had well over 100 signatures and we were climbing. The year that it passed, there were three twenty five. And people who never would have talked to each other in the hallway were signing onto this. Because they wouldn't have anything to do with each other. But this, they would sign off. So we had Kathy to help lead the way, and as part of the leadership, to push and prod to try to get this done. Frankly, we might not have gotten this done if she doesn't have coal. Give them all the credit. That's Herb on the left, and that's Chris Van Hollen on the right, Senator from Maryland. Those two will vote occasionally on the same things the same way. That's kind of rare. But this one, that's a picture of them getting when they got an award from the Global Down Syndrome Foundation that they went up together to get. I'm not sure that would happen today, but it happened then. And Van Hollen jumped on because he doesn't have a family member or anything. We had a lot of constituents in Maryland who had kids with disabilities who wanted this. And he was like, Oh, think I need to be a leader in this. And he jumped on board. That's Bob Case, former senator now, unfortunately, from Pennsylvania. Don't say that politically, I say that because he was so good to us. His dad had been one of the founding authors of 5.9 points when he was treasurer of Pennsylvania. So he said, I wanna do this as a honorary to my dad. And we said, great. That sounds good. Whatever works for you was basically my attitude. And that's a big part of the reason why we ended up with a five twenty nine structure instead of an IRA structure. Because he wanted that, it was important to them. He argued it was easier to get the money and get the program built. I'm not sure I agreed with that, but the community caved. So they went straight to it. And that's Eleanor Holmes Norton. We accidentally discovered that Eleanor Holmes Norton had a daughter, a Downsitter. She never talked about it. When she had her daughter in the early '70s, I believe, maybe early than that '60s, you didn't talk about this. You didn't tell people you had a kid with Down syndrome or other disabilities. You were told to put them in an institution and you did. So she did it. And so her daughter then lived in a group home by this point. But we had to approach her a dozen times to get her to do it, because in the back of her head was still this, This is a problem. People don't want to hear about this. I don't want them to think there's something wrong with me. Which we in the community get a lot. But that changed when she decided to start talking to her other sponsors and she saw the list. She became one of our prime sponsors, even brought her daughter to the helicopter. That was nice to see. Do not get me wrong, I never begrudge the older parents what they went through. You can't judge them for putting their kid in an institution. Arthur Miller, the playwright, did it. And nobody, not even his other kids, knew that for years. When he was married to Marilyn Monroe, she had no idea. He would just go disappear periodically to go visit, I believe, his daughter. That's the way the world worked. So I don't blame her. I'm glad that she saw that the world had changed. So a couple of points to make. The money got squirrelly. When we got to the point of getting numbers on the bill, the Joint Tax Committee was doing it, and they didn't understand at all. So they came to us and said, this is going to be my simple answer. Why? Because all these people have all this money in taxable accounts, and they'll move it to nontaxable accounts. No. We desperately tried to explain to them that that's not the way the disability community works. We're told from day one, no money in the kid's name. Unless it's a special needs trust, which is horribly expensive. For now an ABLE Act. But then it was nothing. You couldn't have more than $2,000 And so there was no money. These kids weren't earning interest on something else and then paying taxes. They weren't paying anything. So they couldn't get into their heads. Our primary tax attorney, Alex Reed, who's now a partner at Baker Hustettler down in DC, partially because his work on this. He's helping me get a Vermont based 501c3 started. He kept trying to explain all this to them and get them to understand that this is not going to cost that much. And that you're not taking money out of a system that doesn't exist. So, we couldn't get them there. And so, one of Kathy's biggest frustrations was every time she'd ask about the money, they'd tell her why it was too expensive. So, she goes to a meeting with a member of Congress I won't name, very senior, who's not there. And she has a meeting with him to try to get him on the bill. He says, oh my god, that's going be like $50,000,000 no way. And she's like, Okay, I guess I got my work cut off. Next day, she goes to a meeting with him in his Defense Appropriations Committee seat. And he wants to build an aircraft carrier. And I happened to be in her office after that happened, and she just lost it. She was like, he wants to build a fourteenth aircraft carrier and thinks it's gonna cost $20,000,000,000, and he won't give me 50,000,000 to solve this problem? And I said, Yeah. I don't really have an answer to that. But that was what she kept facing. She'd go in and ask for something, and it wouldn't seem like very much. She thought, Okay, we can figure out how to get this. So when they finally got the bill passed out of committee, Ways and Means passed a whole bunch of closures of tax loopholes and such to pay for it. Okay. Again, there wasn't any money there in the first place. And the other tax loopholes we looked at were like, it's the same thing. There's no money there, but they're convincing themselves that it is. And so, okay, if this is what we got to do, this is what we got to do. The other thing that kept happening was they kept shrinking the size of the accounts. So original $500,000 with endless growth became, can't have more than $100,000 or we're going to take Medicaid away from you. Dollars 100,000 isn't that much money. And then it was, you can only do the GAF, the gift tax exemption in a given year. That doesn't really help either because these people have issues that come on them in a hurry. And you don't know how expensive that's gonna be. So yes, you can put $20 a year away, but there are people who suddenly find themselves in need of $100,000 specialized medical care. And maybe this will help. The whole point was to make it not be so painful they couldn't do it. So they kept lowering that, and then they did the thing that I really hated, which was, you have to be under the age

[David "Dave" Bosch (Member)]: of 26 when you get first.

[Phil (ABLE Act advocate and parent)]: That was the dumbest idea I'd ever, I'll be honest with you. It set me off. I was yelling at people. I was like, What the hell is this? We can't get it passed without it. Find something else. I'm the son of an Air Force vet. You're going to tell me that somebody who's 30, who has a disability because of something that happened in the military, can't have one of these accounts because they're 30? It doesn't make any sense to me. And I get it, they get VA benefits and they get other such things when such things happen, but there's lots of things that doesn't pay for it. Guys know that. So it was like, this doesn't make any sense. And I've raised it to 46, which is better, but awfully random. 46, 47, 42. Why not 65? Who cares? They're terrified that somebody's gonna come along and start dumping all this money into it, but you prevented that with your gift tax exemption. So I'm not sure how much money they think they're saving. So the changes that we endured were $100,000 Okay, we'll see if we can get it later. We asked for an inflation adjustment, didn't get it. They really needed to do that. The Medicaid limitations that we ended up with, making it up to the states whether they were able to allow paybacks or not, Didn't like that either, but there are not actually that many states that actually go get a payback. I know Vermont doesn't anymore. So we knew we were going have to cave on that one. And again, the age limit. And it became a state run program because that's what Bob Casey wanted, if we were going to get it done, we had to make certain concessions. That was one. It took twelve years to get this done. We thought we had it done on several other occasions. Nancy Pelosi talked about passing it on the twentieth anniversary of ADA. We thought she was gonna. And then all of a sudden, she decided she wasn't. A group of lawyers got to her that tried to argue that Special Needs Trust already fulfilled this need. And when I explained, Kathy was like, Especially, you've never told me to get a Special Needs Trust. I said, Yeah, it's expensive. Mine cost my mother put one in for my son, and it was $5,000 for the legal fees. And then you gotta pay taxes. What they don't tell you is that the tax pay the tax rate on a special needs trust is the highest available corporate tax rate. It was at 42% when we were doing this, Bill. Nobody tells you that that's the case. But it's not a lot of surprise, and they're like, Well, you're bypassing the system and getting Medicaid anyways. We're going take all these taxes out of you. Steve had one for his daughter, Natalie, and he was like, That can't be true. And he went and called us a tax accountant. And the guy was like, Yeah, that's what you pay. It's only on the income, but that's what you pay. I was like, didn't anybody ever tell me this? Because nobody talks about it. Steve was the one consistent theme from beginning to end. As people came and went, including me, it was really hard after a long time. When you're on your seventh, eighth, ninth year of walking in a members' conference halls and asking for the same things with the same questions, getting the same stupid responses. The member from North Dakota who told me that there should not be such a thing as retirement savings because the government should pay for everything. Blank, blank. Where's that money coming from? Or the member of Congress who just couldn't understand, what if people just have food allergies? Won't they get this? What? No. You have to have his designation for Social Security. Food allergy ain't gonna cut it, buddy. I need to be proven that. Oh, boy. Go into the next member. Things like that. So at the end, we ended up with will this launch correctly? Yes. This was the last version to build before it got passed. And I put it up here because of that, the pages of sponsors. And there were some people who showed up later even after this. And if you go through the names, I don't know if there's another time that you got that list of names. Except for resolutions don't mean anything. And so we started something and stuck to a strategy that we forced leadership's hands because we did have 200 junior members of Congress saying we want this and 40 senators, and nobody objecting. Just nobody. And they got stuck they couldn't fight over. What are they gonna do? Look at their junior folks who were in favor of this and say, Oh, sorry, we know better than you do. This needs to be a fight. We backed him in. And it worked. So with that, that's largely my story. As you can tell, it's way more complicated than it should have been. It was a hell of a lot of work for a hell of a long time. But if I go back to the last slide in a second here. This is as of September 30. To be honest, this is about what we got predicted. Alex did a model where he said, this is how much money I think will come in. We were like, that little. And he said, go look at the IRA adoption rates in the seventies. It doesn't happen as fast as you'd hope. It's way more than this now. This was September. But we know there's well above 3,000,000,000 in accounts, which is going to make a huge difference for a lot of people. We've got 223,000 growing every day. Every state has the ability to join a program. There's not a place where you can't. They did change the law eventually, why they didn't put this in in the first place, that you could cross state lines to do it and get any state to have your money, so you could have it. Didn't put that in the original bill when we had to change it. Now, 100% of Americans have it, and there are certain tax benefits. So with all this, I sent a note to the chairman, who reacted awfully quickly. I was very pleased by that. And said, there's some things that I'd like to talk to you guys about because this is never going to be good enough, to be clear. We always need to do things to expand who uses it, to expand how we use it, and to try to make it more lucrative, for lack of a better term, for people with disabilities. Because there's no such thing as enough money. Unless you are Bill Gates, these things can really turn your financial world around. I make good money. I'm a program manager at a software company. I'm a senior director. There were years early on when I went into debt because of Ethan, where my in laws and my parents had to chip in. There were years when I was making over $150,000 in the middle 2000s, he was an extra mortgage payment because of all the therapies and everything else we had to do and driving around and going to conferences and all that sort of stuff. Because we weren't going to ignore all that. So what did we do? We didn't put away as much money as we should have. And I was making plenty. Shouldn't have been this way. But it was. I've gotten past that now, but that's because I got a little lucky. My career took off. I did the things I needed to do. And over time, he's gotten less expensive, but that is atypical. So we're looking for a few things. First of all, it will be support for getting rid of that stupid forty six year limit when we finally convince them to get rid of it. That's not you guys, I know. But nonetheless, we'll need help pounding on certain people. I will say the senators in the Bengal congress room here are very good, so it's not really an issue. But I take nothing for granted. I already talked to the treasurer's office about this. There needs to be a facility for people to manage their own money. Not many people will take advantage of that. It's not like it's a huge risk because they're all going to put their names on things and people are going to come take advantage of it. When you put safeguards in place, we can. But it's not really fair that this money that we assume they can't. That's what we've tried to avoid from the beginning. Because there's such a range. It's a silly story. When I used to talk to my friend Stewart, who was the senior vice president at Autism Speaks, people would come to him and say, My kid has autism. And he always had the same response: You need to tell me more. That doesn't really tell me that much. The spectrum is this now. It's even worse than we were talking about it. So, what does that mean? There are kids with autism who could easily manage their own efforts here. I don't think a lot of people are going to do it. I just think it's unfair that we don't give them the ability to. So, the next one is financially more difficult. I got a tax credit for my granddaughter for giving her money to her five twenty nine. But I don't get that if I donate to an ABLE account. That's not fair. Sorry. I know that one isn't easy to solve. I'm not professing that it is. But equivalency is important in this case. And again, anything we can do to help parents get ahead of this, we should do. So one of the things we did do, for example, is similar to 05/29, anybody can donate. I've encouraged people to hold old fashioned rent parties, for God's sake. I don't care how you get the money, because the system doesn't care how you get them. Go get $10 from everybody you know and open an account. Why not? Grandparents, aunts, uncles, people you don't know. The boss at work who wants to help you out. This is the way to do it. That happened to me. We had a friend who, well, her dad sold his real estate company to Berkshire Hathaway for billions. She came to us and said, I want do something for Ethan. So we put some money in his table account and then put money in an account that I said, that's as much as we can do. The rest of it, put it over here and I'll figure something out when

[David "Dave" Bosch (Member)]: I get the

[Phil (ABLE Act advocate and parent)]: chance. So the thing is, need to figure out every dollar we can. Because that $2.50 will mean something more to somebody who has less money than to me. Just will. It's nice to have, for my granddaughter, I'll take the tax credit, but all I'm going to do is take the $2.50 and dump it back in once the tax credit hits. Not everybody can do that. So how do we get some equivalency there? We need to work on the flexibility of the system. So one of the biggest issues for folks with disabilities, and I'm sure I'm preaching to the converted on this one, here in Vermont is housing. So, I'm in the middle of the developmental disability housing initiative. I joined that. I've dealt with them. We started at Addison County version for up to those so I didn't explain Middlebury. And so we're working on that. That's great. This is a place where you can put some money. But how do we figure out how to make it more flexible in terms of where the money comes from and how it flows through to get people a place to live. How do we make sure I mean, they can put deposits on apartments and such things through it now, but how do we give them everything they need to make sure they can live successfully in the community with this. Because housing vouchers are not exactly forthcoming. Parents oftentimes don't have the money, or if they do, they just build something. I mean, this yellow house in Middlebury, I couldn't afford it. It would have to be practically independently wealthy to do it. Well, that's okay for those parents. And I can tell them they can't do it. It doesn't really help solve my problem, which is all the kids who need this around the state. So we have an affordable housing problem. Shocked. I'm shocked. I'm amazed. Vermont has a bigger four walls of problem. How do we manipulate the system so that we can flow money through from other places through the able accounts if necessary? If it's not and we got another way, that's great. Not saying it has to be this, but it's there. It's owned by this person. We can put money through it. How do we do that? And how do we do it in such a way that it doesn't affect the rest of the totals that they can have? And so as an effect, because I've got that $20,000 limit a year. I've got $100,000 I can have over time. Is that enough to solve this problem for a bunch of kids together? Maybe. I'm talking to for those of you who've been through Middlebury and seen Stone Crop Meadows, the new affordable housing facility that's there, the guy's building is Zeke Davison, and he and I have gotten together. He is giving me, at this point he's promising me, one plot. So I'm going to have one building with that footprint that I can put in apartments and put kids with disabilities in. Dollars 2,000,000. That's reason for my new five zero one(three). So think about that. Even $100,000 through the ABLE account doesn't get it built. It might get me to pay rent, but then where does the money come from to build it? And so all this stuff has to happen. So if that means, Okay, we can set up the ABLE accounts as collateral so you can borrow the money to build, I don't know. I'm not an expert in these areas, but this is something we're going to have to figure out because it's not going to get less. It's going to get more. Technologically, we're going to be able to get technology to do things for these folks, to monitor them better, to monitor their health better. Nobody's going to do that for free. So all those expenses are coming down the road. This is what AI should do. Right? That's the kind of thing you should do. It should know that Johnny just fell down in the kitchen, and somebody needs to come help him. Or, oh my god, there's a fire. I mean, is these some of this stuff sounds really easy to do, but, you know, is that fire serious enough in the kitchen that he's got it? Or I can call the person who's in charge of the building to come get it? Or is it I can call the fire department or not? Stupid example. Not gonna give you any good ones. Suffice it to say there's all these expenses and things we have to figure out to get them through. And we're gonna need more flexibility to do it. And when we figure out together what that is, we'll have conversations about it. But that's the thruster. And now I've been talking for far too long, and my throat is dry. Questions. There's always questions. I hit you with a lot.

[Edye Graning (Vice Chair)]: I have a couple of clarifying questions. Yes. So I'm Edye, we met earlier Edye Graning, I'm sorry, we didn't do introductions. Dollars 100,000 maximum amount in the account at any given time, not over the life of the

[Phil (ABLE Act advocate and parent)]: That is correct. So the $100,000 you can spend it down. We're a little concerned about the sophistication of parents being able to do that, because they're so underwater dealing with all the issues anyways, and suddenly there's $101,000 in there they don't notice, and Medicaid goes away. Until you get it down below 100,000, and then you can do it again. In that regard, it's similar to what Social Security does when they start to earn money of their own. But yes, you are correct. We can go back up to 100,000.

[Edye Graning (Vice Chair)]: And the treasurer holds the accounts today?

[Phil (ABLE Act advocate and parent)]: Yes, they are in the Vermont ABLE stable accounts, which that platform is shared amongst a bunch of states. Which, as I explained at the treasurer's office, I talked to Ashland, and I said, Okay, that makes sense to me for a place like Vermont. If California did it, I'd be skeptical. But yes, they decide, Here's how you sign up for it through that program, and then here is the limited set of available investments you can have. So I'll go back to when my daughter was born and I opened a $5.29 account. I was living in Virginia. And I looked at Virginia and I laughed. I said, I'm not doing this. The fees per year were 5%. That's what Virginia was. Now they've turned it completely on its head. Now they've got some of the cheapest fees in the country. So I went and did my homework and figured out that that time, Utah was the answer. So my kids all had Utah because they had Vanguard. It was dirt cheap. There are no fees. Right? I asked that question at the treasurer's office. Tell me about the fees. Because that, at that point, is part of what matters. That and are the investments good enough? Is somebody actually looking at these every year and going like my financial advisor does? Yeah, that one's not good enough. And they haven't proven they can be better. So let's go get something else. I'm not sure that affirmative action is happening. I didn't get a straight answer to that question. Not to say they're not doing it, just I don't know. So that's the other.

[Edye Graning (Vice Chair)]: You just gave us something easy to work on, so I appreciate that.

[Phil (ABLE Act advocate and parent)]: Good. And then

[Edye Graning (Vice Chair)]: just one other question. That's national data. Do you have for I a

[Phil (ABLE Act advocate and parent)]: do not. I was going to ask if you guys did.

[Edye Graning (Vice Chair)]: But I was just curious. If you already have it, it's easy.

[Phil (ABLE Act advocate and parent)]: Yes. I can find out from these guys whether they can break it down by state frame.

[Edye Graning (Vice Chair)]: Yeah. Hopefully.

[Phil (ABLE Act advocate and parent)]: I sure can. The problem is we don't have good data in the state about the numbers of people that have disabilities and who we serve with disabilities. We found that out through the all the Act 69 stuff, which is a great start. And I'm very pleased with what they came out with. But at the same time, one of their concerns was, we don't have enough data. So how many in Addison County, how many people who get C SAC services, like my son, have a housing problem? We don't have that. So how them have, how many of that population have ABLE accounts? We don't have that either. So, we don't know how many people are available or should have these accounts versus how many Yeah. I'm do not looking for a match, because the truth is it will always be too low. I'm never surprised anymore by how many people don't have a four zero ks. Even those who have a corporation standing above them that offer them that. And they're still like, Yeah, yeah, I never signed up. I mean, I would get 25, 26 year olds saying that to me all the time. So, I don't expect to get 100%, but you're right. We need the data to be able figure out what we gotta do because we probably have some marketing to do. We need to figure out where do those parents show up so we can come talk to them and say, come do this. Because one of the things that they often don't understand is that this is for them. State isn't making a bunch of money off of this. That's not how this works. This little fee doesn't mean you need to be in state of Texas office. Trust me. So it's not like somebody's trying to milk you. Please come use this. And if you need help getting one started, let us help you. Stupidness. I just have a

[Edye Graning (Vice Chair)]: question about It's not clear in my mind what state levers we have versus the Yes, federal

[Phil (ABLE Act advocate and parent)]: always a good question. So the tax credit would be a state lever, and there's nothing in the law to prevent you from doing There's nothing stopping you. We'd have to run it by some point of errors to make sure. But my theory is on how we could funnel money through from different situations. The bill certainly and the law don't say there's any limitation on that whatsoever. So the state could be able to do some things. That could be anything from just giving everybody $100 to open an account to we've got this new function for housing, these vouchers, and it would be a hell of a lot easier if we put the money through this instead of you having to come back and get a voucher every don't know. Making that up all off. So I don't have the answer to that question. I'm really going to be looking to you guys

[Edye Graning (Vice Chair)]: But for the 100,000 limit is a federal

[David "Dave" Bosch (Member)]: limit. Yes,

[Phil (ABLE Act advocate and parent)]: as a federal limit.

[Edye Graning (Vice Chair)]: Yeah, not federal. So a lot of big constraints are federal in some of the way it actually works some of those details. It got

[Phil (ABLE Act advocate and parent)]: squirrelly, as you would expect, because, well, yes, feds fund it, but they don't really run Medicaid. That's run at the state level. So we've never explored, why this is a very good question we've never explored what does Vermont really control as opposed to the Feds at that level. So if Vermont said, We don't care if it's above $100,000 if it's for these things, would that work? I have no idea. I never thought about it. I doubt it. It would probably be worth asking me. Listen, they give out exemptions on Medicaid, left, right, backwards, and forwards, let's say. So I didn't tell you all about me, but I have a PhD from George Mason University in public policy. My dissertation was on the closing of institutions for the intellectually disabled, what that meant both from a program and from an financial perspective. Everybody always told me they're so expensive to run on them. They'll flow back into the system, and all these people are going get waivers because of that. And I proved that was true. But at the same time, one the things that it really emphasized was Medicaid and how there are so many variables to Medicaid, and there are all these exemptions to Medicaid. And there was talk when Vermont, for example, got rid of its institution of forcing states to have institutions. That was actually a conversation in Congress. I still deal with parents who tell me institutions are better. And they're lucky I'm not in jail, because that's just not tolerable to me. Don't even show up telling me my kid belongs in an institution. You won't like that reaction. But because of all that, there's ways to manipulate the system. I need my experts to tell me what that is. I had the luxury of my dissertation. One of my committee members used to run that segment of OMB. So he was very helpful with that. Go back to Manasco. Actually, is there stuff he could do? He might have the answers, but we can probably figure out what there is. So I don't have a great answer to your question. Look at that, I did it in an hour. Thank you. I don't want to keep you guys for the sake of it.

[Edye Graning (Vice Chair)]: I

[Phil (ABLE Act advocate and parent)]: mean, it's a fun story, but actually

[Michael Marcotte (Chair)]: it was really interesting to understand how this all came about. I agree. And, know, I think we need to understand what more we can do as a state to try to help, especially in the housing part of it. I think it's interesting. It's an interesting thought on how you could leverage the Able accounts as collateral.

[Edye Graning (Vice Chair)]: Actually like a master lease. And

[Phil (ABLE Act advocate and parent)]: as they do, they've got to redo licensing. That's one of the things sixty nine pointed out. There's other things that are going to have to happen. I know how important this is to everybody in this legislature and how much of a problem it is. So yeah, maybe somebody who'll help a lot smarter than me in these areas can help us figure out what might work and what you guys would accept, because we all need more flexibility in the system.

[Michael Marcotte (Chair)]: Real real helpful. It was very I did like the war story. You guys live in those.

[David "Dave" Bosch (Member)]: Might be A lot of it just resonates. I mean, whether it's a federal or state, you know, there's some similarities, I think. So I'm

[Phil (ABLE Act advocate and parent)]: trying to

[David "Dave" Bosch (Member)]: get a basic understanding of what the program parameters are.

[Phil (ABLE Act advocate and parent)]: Yes.

[Michael Marcotte (Chair)]: Both at the federal level and at the state level. We don't have to do

[David "Dave" Bosch (Member)]: that now. Probably have enough time. But if we could, I'd appreciate knowing, you know, what what are the limitations? So then you could say, well, you know, where's flexibility to change what? Right?

[Phil (ABLE Act advocate and parent)]: Yes. So you're Herb. Yes. Addison County. Ah. Even better. Northeast Addison County. Here we go. Yeah. I'm sitting on the Regional Planning Council now. So I have extra That's why I recognize you. Just I'm I'm just an oddball volunteer right now. Don't I don't sit in official chair. They have whatever they call those, extra positions.

[David "Dave" Bosch (Member)]: I'm sorry to ask me, Dave.

[Phil (ABLE Act advocate and parent)]: Probably. But I will drop you a note, Herb. Considering you're in my neck of the woods, let's have a specific conversation about that, because I can lay it all out for you. No problem.

[Michael Marcotte (Chair)]: Thank you. Phil, thank you very much.

[Phil (ABLE Act advocate and parent)]: My pleasure. If you guys ever have more questions, want to hear about something more specific, live in Vermont, so an hour drive is a nothingburger. I will tell you that after we moved to Vermont, my wife and I keep looking at each other like, why didn't we do this a long time ago? Northern Virginia sucked.

[Michael Marcotte (Chair)]: This is way better. Well, we're glad you're here. Thank you. Thank you. Yeah, was super interesting.

[Edye Graning (Vice Chair)]: Thank you.

[Michael Marcotte (Chair)]: Well, certainly, I think some conversations that we could have with our housing people, with VHFA and the seats even to see what we might be able to do.

[Phil (ABLE Act advocate and parent)]: Listen, there's not a lot being done with it right now. There's a lot of flexibility here. Anything would be appreciated. Be assured, this does not have to solve world hunger to be part of the solution. That's for sure. So thank you for your time. Thank you very much.

[Michael Marcotte (Chair)]: I think we'll take five.