Accessibility Is Home podcast
Welcome to AI Home podcast, the first exclusive podcast on real estate resources and independent living strategies for the disability community. Why? Because Accessibility Is Home. Brought to you by Angela Fox, blogger, and author of “My blue front door”. Ms. Fox will be interviewing Realtors and home improvement contractors who are both disability friendly and others who may have a lot more to learn. Ms. Fox will also provide takeaways for anyone wanting to be a homeowner with a disability.
Accessibility Is Home podcast
From Capitol Hill to your front door: how advocacy shaped policy for disabled homeowners
Thirty-five years after the Americans with Disabilities Act became law, the journey from Capitol Hill to the front door of disabled homeowners remains fraught with barriers. During Disability Awareness Month, I had the extraordinary opportunity to join the United Spinal Cord Injury Association's annual Roll on Capitol Hill event—bringing the voices of wheelchair users directly to lawmakers.
My journey began with a telling experience: an out-of-service elevator threatening to prevent dozens of advocates from reaching their congressional meetings. Through social media persistence, the elevator was fixed within hours—a small victory highlighting the very transportation issues we were advocating to address. This set the stage for our four critical policy priorities: updating federal accessible parking standards, reforming paratransit services, improving wheelchair repair processes, and protecting Medicaid from harmful cuts targeting homeowners.
The statistics we shared were staggering. Nearly 10 disabled parking placards exist for every 100 registered vehicles, yet only 4% of parking spaces are required to be accessible. Wheelchair users face 33% higher risks of being killed in vehicle-pedestrian crashes. Wheelchair repairs take an average of 14 days—sometimes stretching to six months—with breakdowns often creating medical emergencies for those living independently. Most alarming was a proposal to cap home equity limits for Medicaid eligibility at $1 million, effectively forcing disabled homeowners to choose between keeping their homes and accessing healthcare.
Though the Senate ultimately passed what I call the "Big Ugly Bill" without our specific priorities, there were positive developments. The ABLE Act extension allows disabled individuals to save for home ownership expenses without losing benefits. Tax changes could help disabled families qualify for mortgages. These mixed results remind us that disability rights progress is a long game, with many battles happening at local and state levels where disabled homeowners have the standing to drive meaningful change.
What makes our advocacy powerful isn't just statistics—it's our personal stories. If you're a disabled homeowner, your experiences matter. Share them with legislators, local media, and neighbors. Join organizations like United Spinal or ADAPT. Together, we can raise the bar for disability home ownership while continuing to fight for policies that recognize accessibility isn't just a feature—it's home.
Cush Pocket, a proud sponsor, is a disabled owned company that sells wheelchair bags. Get $1 off by using code Angela Fox
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Welcome to AI Home Podcast, the first podcast for real estate resources and independent living strategies for the disability community. Why? Because accessibility is home. Hi, I'm Angela Farms, blogger, author and your host. Now let's begin. Welcome back everyone to accessible is home, and I am antel fox. I am in my accessible bathroom. Horizontalcom knows that accessibility to home is more than a bathroom. I'm recording this episode which I have not done in a few months. I do apologize. I am recording during Disability Awareness Month, just days after the 35th anniversary of the Americans with Disabilities on July 25th 1990. Imagine it's been 35 years already and I want to take you on a journey from the halls of Congress to your front door, literally Back in June, I had an incredible opportunity to participate in the United Spinal Cord Injury Association's annual Roll on Capitol Hill event.
Speaker 1:For those who are not familiar, it is the largest wheelchair disability organization in the United States. Their annual advocacy event brings wheelchair users and advocates from across the nation to Washington DC to speak directly with representatives about critical disability issues. What makes this episode particularly timely is that, just days before our big advocacy push, the Senate unfortunately passed what they call the Big Beautiful Bill. I call it the Ugly Bill, while none of our four specific advocacy issues made it into the legislation. Unfortunately, there was, believe it or not, some positive developments with disabled homeowners that I want to discuss, along with the critical work that still lies ahead at the end of this episode. But before that, let me take you through my personal journey to Capitol Hill, because the experience of getting there illuminating many of the very issues we were actually advocating for that day.
Speaker 1:So I woke up early that morning, all excited, and left my fully accessible ranch home in Rockville, maryland, living about a mile away from the metro station, I made my way to catch a 30-minute train ride to Washington DC. This was actually my second day on a road on Capitol Hill experience because the day before I attended the all-day conference at the Mayflower Hotel in DC where the United Spinal Cord Injury Association prepared us for our congressional meetings. The conference was incredible. We spent the entire day in the conference room learning about the history of the Roll on Capitol Hill event, which actually has been going on for 13 years. We networked over lunch with other wheelchair users from across our beautiful country and we practiced communication tactics and tips to help us prepare to speak to the Congress members the next day. The role sessions were particularly valuable. They helped calm my nerves about speaking to elected officials about such personal and technical issues. But here's the irony of advocating for transportation accessibility really hit home.
Speaker 1:That afternoon, very engaged in the day's events, I noticed that I got an alert from Metro that one of the elevators that we all had to be using the next day was down. It was out of commission all week for that to happen. Actually, in DC that happens quite a lot, so I wasn't super surprised and that's why I had text alerts. I then immediately did something that I learned as a tip. Instead of emailing or calling or wishful thinking that something would change, I actually went on X and sent Metro a Twitter post and said hey, heads up. Tomorrow, a few hundred virtual users will be using this LR to speak to the Congress and Senate members. You might want to fix this particular LR, because we all will need to be using it. I then, because not every tweet on ads is immediately read, especially if there's no comment. I then found another Metro Access post that they made themselves. It didn't matter if the topic was the same, as long as it had a lot of comments, and then I put the same message in that comment, and wouldn't you believe it? Within three hours, I received a response and the elevator was fixed, so that's a little pro tip for you. Think about that for a moment, though. It took social media campaign and the threat of structures of wheelchair users being stranded to get a critical piece of accessibility infrastructure repaired in a timely fashion. This perfectly illustrates one of the transportation issues we were heading to Congress to speak about.
Speaker 1:So after that day, the next morning, I made the metro journey again. When I arrived at the Capitol complex, I was both nervous and excited. Despite living in the DC area for almost 15 years, I had never been inside the actual Capitol building itself. The security guards were incredibly helpful and accessibility for getting inside was very good. However, once inside, I immediately noticed issues that wheelchair users faced daily. The directional signs were limited, not a lot of go here, go there for the House or for the Senate, because both buildings are connected. That signage was limited, but the signage that did was posted was actually at a very high level, making the ability to read it and navigate in the right direction very challenging, and I end up asking several people, who are very helpful strangers, to be able to read the information for me, so that's a little bit of disappointment, but one of the highlights of the accessibility and being inside the building was, I didn't know, shamefully, I didn't know that there was an internal train system to get back and forth between the House and the Senate buildings.
Speaker 1:There are tunnels and once you use those tunnels, there was this like Wizard of Oz, an actual train station that will take you. I think it's about half a mile. So if you're not familiar with the DC area, particularly Congress of Chambers, it actually takes up a few blocks of DC, so that's why you apparently need an internal trade system. I really enjoyed that, even though I use the metro system pretty much on a daily basis. What struck me, though, when I was running around in the actual difficulties of the chambers is the incredible diversity I saw throughout Government officials from all backgrounds and advocacy groups pushing back on aspects of the big, beautiful bill. It was really exciting to see not just perhaps some individuals from different countries having that type of time, but just the various advocacy organizations that have different shirts you can always sell, like blue or green or yellow shirts with, of course, the logo Ours, united Spiral Court Injury Association. The color was orange. We didn't have actual t-shirts, though, but it was really exciting to see the diversity within the chamber's commerce and I also got to witness one of our what I call one of our sister disability organizations ADAPT A-D-A-P-T hosting a protest that resulted in security arrests.
Speaker 1:So, if you're not familiar with ADAPT, adapt is the organization that was started in, I believe, the late 1960s at the University of Berkeley by Stuart Zinn, and ADAPT actually helped create what we call the Independent Living Movement, which allowed us from getting out of institutions into the community. But what makes ADAPT particularly unique and effective was that their focus is to do protests. In fact, not only do they do protests, like traditional other organizations, but they have, let's just say, a history of actually going into federal buildings themselves with the intention of getting arrested, and they did that back in 2017, when the President Trump administration was threatening to get rid of pre-existing medical conditions, and they actually went into Congress, again illegally, with the intent to get arrested, and they called it them the die protest, because, without health insurance, particularly those for pre-existing people were eventually done, and that would be the disability community. So once again, underneath this big beautiful bill, they were there and I didn't get to see the US, but I was very proud of them and I secretly I'll be honest, I secretly wish I could have joined a deaf direct, but my role with the United Spiral Corps Association was focused on the back end of advocacy, talking directly with Congress members in scheduled meetings, and I couldn't miss that opportunity but go adapt. Thank you so much. This experience reinforces why the work we were doing mattered so much seeing ADAPT there and other organizations Even in the nation's capital, supposedly the most public building in America, as I mentioned, I encountered barriers that made navigation challenging.
Speaker 1:Issues in Congress itself. Imagine what disabled owners deal with on a daily trying to get to banks, grocery stores, medical facilities and other essential services in their community. So what were we actually doing there? United's Final Court Injury Association came to Congress with four specific policy priorities, each of which directly impacts disabled homeowners' ability to live independently, and they were focusing also on the greater good for the disability community not necessarily disabled homeowners, but because we are talking about this in my podcast, I'm highlighting that these things that they were advocating for does impact disability home ownership. So let me walk you through each one and explain why they meant home ownership.
Speaker 1:From my perspective, accessible parking it's the foundation of community access. Our first priority was updating federal accessible parking standards. The numbers we shared with Congress were staggering there was almost 10 disabled parking placards for every 100 registered vehicles. Yet current ADA standards only require 4% of parking spaces. So the massive disconnect between reality and regulation was there. And even though I've been driving since I was 16, I'm very familiar with accessible parking. And even though I have had many family members and friends with me where I could not find a parking spot and I knew that there was a disconnect, I didn't know these numbers. I didn't know it was 10 to 100. So that is something that is staggering. Researchers also show why having pay cap parking close to the facility or the business that you want to visit is. Research shows that wheelchair users are 33% more likely to be killed in a vehicle pedestrian crash 33% more likely. When accessible parking is inadequate or improperly designed, we're forced to park farther from our destinations, navigate unsafe or risk just to get access to basic services.
Speaker 1:And right before I record this episode, this really hit home. I have a very good mentor. She's down in Florida and literally when I called her just about a week ago. Before recording this, she goes Angie, you're never going to believe it. We were driving and we parked a hay cab van. I got out of the lift. She's also a wheelchair user. Her boyfriend was driving around and before her boyfriend could get out of the car, somebody in the parking lot literally hit the van. Everybody's all right, thank God, but it really mucked up their lift and so right now they don't really have a working handicap van. So it really did hit home For homeowners like herself. She's also a homeowner down in Florida. This creates a cascade of problems when dealing with handicap parking. When you're house hunting as a wheelchair user, you're not just evaluating square footage in school districts, you're accessing whether you can safely get from your car to your front door, whether visiting family and friends will have accessible parking and whether essential services in your neighborhood are actually accessible. Imagine that Many neighborhoods, especially older developments, don't meet even our current outdated standards. This perpetuates highly. Segregation is severely limited where disabled people can choose to live.
Speaker 1:So what was our ask? We advocated for legislation, sponsored by Representative Steve Cohen and Tim Burr-Chattet, that will launch a government accountability office study to examine federal-funded parking facilities and recommend updates to federal ADA parking standards that reflect the reality that we are facing the 10 to 100. One thing I want to tell people, because I think it's really good to understand your federal government, because so much of what we rely on is the federal government, despite what's going on politically and that is the Government Accountability Office. They're the researchers for a variety of legislation. So if you are interested in an advocacy push, having the right data is really important and sometimes the data is just not available. So reaching out to your congressman, asking your congressman to then ask the Accountability Government Office to do a study, is a way to do that. Our second priority was reforming the paratransit services through legislation sponsored by Representative Dinah Titus.
Speaker 1:So what is paratransit? For those of you like para, what Paratransit, what Paratransit? Paratransit is basically a shared ride that every state needs to help individuals who cannot use public transportation. This is a federal requirement. If you register and provide medical information and get in your home state and you have a card, other states for a short-term period must honor that as well to use their own transit. Let's say you are going to visit the DC area and you are disabled and you use your paratransit in Indiana and you're not able to sufficiently use the public transportation. In DC, you can use what is called Metro Access.
Speaker 1:Paratransit is named differently in different states, but it is a shared ride for individuals who are disabled can't use the public transportation. It has to be within the public transportation location. Unfortunately, if you're one mile outside of the bus routes, train routes and things like that, you can use a paratransit, and I literally had that happen to me when I was in law school in Lansing Michigan. I had my very first apartment. I was very excited and I literally only lived about three or four miles away from downtown and I knew that there were buses that went outside downtown. But unfortunately, my apartment complex was literally one mile away from the bus stop and that made the paratransit not available for my use. So keep that in mind.
Speaker 1:So what was our actual? And that is, we advocated for a national pilot program that would do the tests of one-stop paratransit, allowing riders to make a 15-minute stop during trips for essential tasks. Because, as it is today, when you do use paratransit, you always have to book at least 24 hours in advance and it's for one trip. 24 hours in advance and it's for one trip, so meaning that you could eventually and I'll tell you my whole story at Metro Texas. But I say eventually, you can eventually get picked up, dropped off at that location and guess what? You have to make a separate pickup location if you want to go back to your house or if you want to go let's say I want to, I don't know go to my bank, get money, go to the grocery store, then to the drug store for my medication, maybe stop at a restaurant afterwards for a happy hour and then that's four to five separate trips that you have to book 24 hours in advance and it's usually always a two-hour window when you need to be picked up, and so this creates a very high burden that people with non-disabled that have to deal with that.
Speaker 1:And one thing, as I mentioned, that is a shared ride, and the reason why I'm reiterating this is because it's not quick. I have literally been on Metro Access myself when my van is broken and I have a medical need to use it and unfortunately they could pick me up in Rockville, right, and pick up three or four people in Rockville. Let's say, two of those individuals need to be dropped off outside of the county and then, since I was going into DC, they would pick up people in DC and then they would drop me off. So that means they picked up people in Rockville, they dropped people off in Maryland, they picked people up in DC and then they drop me off. And so can you imagine trying to book four or five stops? That is ridiculous.
Speaker 1:So we are asking that a 15-minute stop is allowed when you are booking, and it's also really critical to remind people who are not disabled that paratransit in a lot of locations is the only transportation option for individuals with disabilities. And you'd be like wait a minute, what about taxis? No, not all taxis need to be wheelchair accessible. The company must have a van as part of their fleet. If it's just all cars, then they do not need to have a wheelchair accessible taxi.
Speaker 1:And, honestly, taxis are dying. They've been dying off dramatically, or going under, if you want to say it in a business sense. And we literally, as a disability community, call this the Uber effect, meaning Uber has literally killed off a lot of taxi companies, particularly those who have accessibility in their fleet. And why is that? Because Uber does not have to be accessible. Yes, I said that Uber, lyft, those other quick taxi services do not have to be accessible, because they're all contractors and, if you think about it, everybody the company, uber and others are relying on individuals who already own their vehicle and they use their own personal vehicle. They don't use a company taxi, so we literally call that Uber effect. So having parent transit updated with 15-minute stops is really critical.
Speaker 1:Also asking is improved legislation, improved pedestrian access for sidewalks, crosswalks, streamlined complaint portals Because that can be an issue and better data, of course, on transportation as a whole, which part of other things that we ask within the transportation advocacy bucket, as I call it, our third one, because I said there was four what wheelchair repair when your freedom breaks down? Because it really does break down. Our wheelchairs are just equipment. Okay, they're not equipment. Our wheelchairs are our legs, our freedom, our independency. Many of us use our chairs up to 16 hours a day. They're medically prescribed, customized to our bodies, and can cost tens of thousands of dollars. In fact, the wheelchair that I have, permobil M3 class is, without insurance, $28,000. And luckily I have great insurance, but many people don't. So that is something. It's more than just a device. Okay, it is a financial investment.
Speaker 1:Statistics that we shared with Congress about wheelchair repairs was alarming. A recent study found that the median repair wait times was 14 days, with some repairs taking up to six months, and I can attest to that. Nearly 25% of participants reported unmet repair needs. Even when they do get it, so they can manage away a few months and then find that not everything got accurately taken care of. The health consequences were severe when repairs are not done in a timely fashion, wheelchair breakdowns lead to 1.73 times higher odds for pressure points, which is a big thing that a lot of us have to face. Also, it's 1.8 higher odds of being hospitalized. So you got out of being in a hospital, you're doing good for a year or two. Your wheelchair breaks down and and unfortunately, you might get some pressure sores because you can't be in that wheelchair that was designed for you, you're sitting in something else. That's not good. For homeowners.
Speaker 1:Wheelchair breakdowns can be catastrophic. If your power wheelchair dies and you can't reach your accessible bathroom, that's a medical emergency. If you can't get from your bedroom to your kitchen, you might not be able to eat or take your medication safely or at least in a timely fashion, and I know firsthand what it means to live alone and your wheelchair loses a charge after just an hour of use and my technician seemed at that time not to be understanding because he said, hey, I can only go an hour of use. And my technician seemed at that time not to be interested because he said, hey, I can only go an hour. His response was like but you're in your house, right, you're not going very far. And I said I live alone and whether I need to move a mile or a foot to get to the bathroom, I still need to use my wheelchair. And so that kind of made him test reality of that. It doesn't matter the distance, it doesn't matter the length. If it breaks down and I can't go to the bathroom, I can't feed myself. So it really does happen.
Speaker 1:And one thing that people don't seem to understand is that when a wheelchair breaks down particularly disabled homeowners it could cause financial hardship. You could be missing work due to mobility equipment failure that can lead into missed mortgage payments. Emergency institutional care you might have to go to because you have those medical things that do occur for not being able to sit properly. And while you're waiting for those repairs, you've been taking out money to be hospitalized or to get that emergency treatment that you had saved up for a rainy day for repairs for your home, or to do additional modification which improves your independency and, heaven forbid, prevent more hospitalization or more medical problems. What was our task? Or more medical problems? What was our task?
Speaker 1:We advocated for legislation, led by the great Senator Tammy Duckworth and Representative John Lawson, that would remove unnecessary prior authorization requirements for Medicare Advantage plans. Can you imagine and I've been through this actually just a couple months ago you really have to ask your doctor hey, can you write me a script for wheelchair batteries, like you really had to say or I need a new armrest. But a doctor will have to say, yeah, but your medical condition still has not changed and you still medically need to use a wheelchair for independency, and part of that wheelchair is batteries. And so literally we'll have to say wheelchair repair. So we will ask you for that to go away. We will also ask you to reimburse travel costs for certified repair technicians to come to your home and, believe it or not, it's not necessarily covered by all insurance, and so you're forced to actually go out there and take your wheelchair to the facility where the technician is at. How do you do that? You ain't going to do that, right. You, as a disabled person ain't going to do that, so you have to rely on family friends If the technician does not come out, insurance does not actually pay for it, and so we were asking for that travel cost to be reimbursed. We also want to look after our technicians as well, then provide preventative maintenance coverage, require clear repair timelines, offer loaner wheelchairs and allow users to repair certain components themselves without having fear of losing a warranty. The home visit provision is particularly crucial, obviously, for homeowners, who may find it To transport large or powerful equipment. Having technicians now is just imperative for them all. And it's funny, speaking of having a technician come out to you, this is very personal.
Speaker 1:I remember many years ago, on a very rainy day in downtown DC, as I was wheeling to go to my work. After getting off the metro, I did see that there was a little mini pothole at the end of the ramp because there was water and literally my front wheel got caught, spinned me 90 degrees and I got flown out. I don't wear a seatbelt. I got flown out onto the side of the road. Luckily I was okay. Actually, I was stunned. I'm like how did I end up on the ground? Didn't see that coming and I had wonderful pedestrians to help me get back up in my wheelchair. Unfortunately, I broke my gear and that's why the wheel stopped and got caught and flung me out. And so I remember calling my co-workers pulling me backwards in the rain because I was unable to go forward due to the gearbox. I didn't know what was going on at that time. Later found out it was a gearbox, but for some reason they could go backwards. They could push me backwards in my electric wheelchair, but they couldn't push me forward. So they were literally pulling me in my 250-pound wheelchair in the point of a two and a half blocks, because I knew at that time be able to get a technician to come out and assist me. That wasn't going to happen. Particularly during a rush hour. That wasn't going to happen. So it's either calling me emergency 911 or literally asking my coworkers to push me. So that's just one kind of extreme example why having technicians come out is so critically important.
Speaker 1:Also, one thing I wanted to also bring up again is the ability to do preventative maintenance. What does that mean? That means that insurance only fixes things after they don't provide anything ahead of time. For example, you know that most wheelchair batteries last, depending on how you use it two, maybe three years and then, once they start going bad, they start going bad fairly quickly and you don't know where you might be when they start losing a charge and, unfortunately, for insurance to cover the replacement, the battery has to be bad. You have to be in that situation in order to get your health insurance to pay for it.
Speaker 1:Can you imagine having a vehicle for you? An able-bodied individual is listening. Can you imagine having your vehicle and you can't change my oil until the check oil sign is on? Can you imagine that may not be convenient. Or, even worse, you might call them and say is check oil? And they might say is there a problem with the oil? Do you know if you have oil? And going through that nonsense before you get someone to help you, wherever you might be, when that check oil light goes on, and then, to even circle back onto doing it yourself, which a lot of people do change the oils themselves. Imagine that you are prohibited. Change the oils themselves. Imagine that you are prohibited, meaning that if you were to go and get that oil yourself I don't know Walmart or whatnot and you go to a mechanic and say, hey, here's the oil I bought from Walmart. Can you change my oil? Can you imagine them saying, nope, sorry, that will break your warranty that you might have? It's our company policy that we don't put in any oil unless we are the ones that bought the oil ourselves. Yeah, that literally happens.
Speaker 1:I've tried to go buy a battery for my wheelchair. A lot of these batteries not all, but a lot of the batteries are just car batteries with a logo on it, and I've literally bought batteries out of the cars on an online service and I asked my technician to put them in my wheelchair because I physically can't do it myself and he said sorry, we can't. And I remember sitting in my Senator Hogan's office and telling them this story of how I wanted to buy my batteries by myself and I couldn't because I had to return it by them charging you for them ordering the part. Even though they don't bother to have stockpiles of very much of any parts, really, they always end up ordering them and they want to make money off the parts. And then I also mentioned that even though we, the organization pair I really like to use the word play, because technicians do not take apart anything and figure out specifically what is wrong. For example, my issue when my gearbox stopped working, they tried to move it around. They did bother to open up the entire gearbox, find the one little piece that might have been broken and replace that specific spec in the gearbox. Piece might have been broken and it replaced that specific spec gearbox. A note that what they did was they just ordered parts. That's why I told Senator Hogan's office they just replace parts, they don't repair. So besides them upcharging that part that they're replacing, it's actually costing the consumers and the insurers more money because they're not fixing, they're just replacing. So that was our third.
Speaker 1:Our fourth was very important save the best for last, so to speak. Our fourth, and perhaps most critically, priority was protecting Medicaid from fall for cuts, particularly proposals that would force disabled homeowners to choose between keeping their home and accessing health care. As I mentioned, a lot of these advocacies that United Spiral Court Injury Association was advocating wasn't specifically targeting disabled homeowners, and that certainly was the case. But I will have to say that this particular advocacy issue really does directly impact disabled homeowners. So let me talk a little bit more about it. More than 40% of the working-age Americans with disabilities rely on Medicaid, not just for basic health care, but for home and community services that allow us to live independently instead of being warehoused in institutions.
Speaker 1:The specific threat that we were fighting was a proposal to cap home equity limits for Medicare. The eligibility was $1 million, with no annual inflation adjustments, effective January 2020. Even worse, it would prevent states from disreferring home equity considerations when making eligibility decisions about individuals who were medically needy. So let me explain this in human terms. So let me explain this. Imagine you're a person with a spinal cord injury who worked for years to buy a modest home and maybe because of COVID and other things, or you just had it for 15 years, like myself, and your home has appreciated in value. Hey right, let's say we bought it for half a million dollars. And guess what? Now it terms a good thing to have having equity.
Speaker 1:However, unfortunately, the legislation says, hey, if you have equity that is a million dollars or more, you're not eligible for Medicaid. It doesn't matter if you lost your job, you got that spinal cord injury, you were gainfully employed. Now you can't work, for whatever reason, and they are saying that because you have equity up to a million dollars, you're not eligible for Medicaid. That's exactly what they said, and so what this means is that, under the legislation, you will be forced to choose between keeping your home also your most important asset and, of course, a symbol of independency or receiving the informal care services you need to avoid being institutionalized.
Speaker 1:So I'm not quite sure where they expect people to live. Are they expecting you to sell your house and then get an apartment? I don't know what they were doing. This is just cruel. This is just inhumane. This is you are literally penalizing having a home be financially stable, all because something medically happened and now you can't work and you can't retire yet, and so this is just cruel. And it doesn't even make economic sense either, because many people might be like whoa gee, I'm not a homeowner and if I have a million dollars in equity, why can't I sell your house and use that money? That money is going to go up very quickly. It's going to be used up very quickly. And let me give you some stats Northeaf home care costs taxpayers an average of $108,000 a year, while home and equity-based services are average of $22,000 annually. So if you're spending $100,000 a year, and on top of all, just to be in a nursing home, that's not your medical treatment, that's not necessary food that's not trying to live your life and visit family, be engaged in businesses, having your life, it will go very quickly.
Speaker 1:So we urge Congress to reject any attempts to limit that state's ability to fund Medicaid. Of course, we oppose a million dollar cap and that was a really big heartache for many of us. Those were the four things that we advocated for, unfortunately, the Senate ended up passing the big ugly bill. I wish I could tell you that our advocacy was immediately successful, but the reality of policy changes is more complex and often disappointing. None of our four advocacies made it to the table, and so that was a big disappointment. However, despite our advocacy not reaching, I wouldn't say failure, because we had over 150 appointments scheduled, because we had people across the country and had some very good conversations, so I wouldn't say failure, just wasn't successful. Let's look at what happened in the Big Beautiful Bill, and there was some positive-ish things for homeowners and disabled homeowners, particularly what happened in the Big Ugly Bill.
Speaker 1:I don't know how many of you are familiar with the ABLE account A-B-L I forget what it stands for. I should know. The ABLE account was passed in 2019. It was something that was advocated for a very long time and obviously successful ABLE Act allows individuals who receive Social Security Disability, those who become disabled and can't work, to put money into this account. It doesn't count against their Social Security disability. You're like, oh wow, that's great. The ABLE Act account not only protects your Social Security disability because many of you can have more than $2,000 in cash on hand before you start losing your Social Security disability and $2,000 goes especially in inflation right now and blink it an eye and I'll tell you my little story about that but certainly not only to protect your social security disability, but that money that you can put in the ABLE account, you can use it for anything related to your disability and no, I don't mean medical. Okay, that was one thing that the disability community pushed really, really hard on is that? No, we're not here just to pay the medical bills. You can, but anything that you would, as a disabled individual, have to do. It pays for that able-bodied clinic, and there's also some very broad categories. You can use it to save up for a home. You can use it to repair your wheelchair, repair your car, mortgage payments, things like that. So it was really a big deal. That was in 2019.
Speaker 1:And I had the wonderful opportunity to actually be involved in Maryland's tax force, because each state had to figure out how they were going to implement this ABLE account. Back then, in 2019, you were able to put up to I believe it was $28,000 a year and it can roll over from year to year with a maximum in the ABLE Act account for $100,000. Yes, you heard me. You could save up to $100,000. It's a tax deferred. So once you made that year if you save it from year to year, that money that you put in that you earned, whether it was given to you or you work part-time you were able to put that in from year to year and maybe you didn't make any withdrawals that year and so therefore it didn't count against your taxable income, which could potentially help you on taxes at the end of the year. But you maxed out $500,000, and it was going to sunset in 2025. Luckily, there was an extension on that in the big ugly bill and also it expanded limits on how much you could pay. It also allowed you to continue to roll into your 529 educational accounts and, for disabled individuals, save for home ownership. This was transformative. You can now, like I mentioned earlier, save up for down payment, do modifications or even emergency home repairs. This permissive of not having a timeline where able accounts were going to sunset, which was this year I go back to the permissive provides a long-term certainty that disabled individuals need to manage financial planning decisions and, frankly, to potentially get out of Social Security.
Speaker 1:I was one of those individuals. I had to get on Social Security Disability at 18. My father lost his job. I was going to start in college and so I need health insurance. I need some financial support and, luckily for me, within a couple months of me starting college, I got a job. I quickly found out that when I was getting a college job, that my Social Security was being deducted that monthly. And then I just got lucky that within just that same year, the ticket to work program that President Bush passed, which allows you to use money to get education, trade that you will need in order to get a job, counted for, I was able to hey, this part-time job I have in college I am using to pay for my books, my tuition, things like that. I'm getting this education because I want to become a lawyer and I was able to do that all the way up through law school. But once I got out of law school, obviously out of Social Security, got a federal job and have been very productive, but I also was able to actually use it, because at that time, if you become disabled, either you're on social security disability or you become disabled before your 27th birthday, which I was born with my disability. Since that time, though, the age timeline unfortunately I don't have it off the top of my head, but there has been amendments and it has raised that age gap, I believe, to 49. But I could be wrong about that, certainly look at this but this big ugly bill did say no, there's no sunset. They raised the additional money they could put in as well as the age gap. Beyond Social Security Disability, there is no age gap. So it was really exciting.
Speaker 1:Another thing that did improve in a big ugly bill is tax cuts. There had been a 10,000 limit on SALT deduction. This new bill raises that limit to $40,000 starting in 2025. With the benefit beginning to fade out after $500,000 of income. Both figures increased by 1% each year through 2029. Then we've laid back to the 10,000 figure and it's important to know, like, where do you get this 10,000 figure? It was from Trump. I actually have a blog post on horizontalhousescom where I talked about 2017 and his tax plan bill back then in 2017 was considering cutting salt altogether. This, particularly making the salt increase, benefits disabled homeowners in high-tax states like California, new York, maryland and my home state, maryland Many of the states where housing costs are the highest and where it's more accessible because if the state has more money, they generally not always, but generally they visit public transportation, a few other disability services.
Speaker 1:So obviously, if you build it, we will come, and if the services are better, we're going to be living, if we can, in those higher states. So there's a higher disabled population in more costly areas, including mortgages. So it's really exciting. So you can also do that. So that was that. The bill also includes temporary deductions for overtime pay tips and auto loan interest, plus increases to child tax credit lasting until 2028. While these changes are temporary, they could help disabled families with tighter budgets qualify for mortgage and afford monthly payments.
Speaker 1:So what did we lose though it terminated energy-efficient home improvement credits and new energy-efficient home credits. Why does this matter? For disabled homeowners, who often need to run equipment like ventilators, power wheelchairs myself or accessible devices that increase energy usage, losing these efficiencies, etc. Is particularly problematic and, I don't know, not good for our environment, but who needs that? But I'm just so frustrated. So what does this mixed results for disabled individuals, particularly considering disabled homeowners, really mean? If you're currently renting and considering buying a home, the Expanded Able Act could be beneficial to help you save as well solve tax those tax breaks that we talked about. If you already own your home, that certainly is beneficial, but please be mindful and watch your home equity in case you know your health does deteriorate more significantly and while you could be working now you can't. Or, if you're able, by community, you need to keep an eye because most people are not born with a disability.
Speaker 1:So the role on Capitol Hill, experience in the subs and the legislation that did get passed makes it clear that advocacy works. It's a long game. It is. It's a long game. It's a long three years. The ABLE Act extension didn't happen overnight, as I mentioned. It took me, took over a decade to get that done. So please do not lose hope. Please do not Do not think that disability, home ownership if you don't have a home yourself, and it's easy to just get frustrated with the federal government as a whole. So while we're fighting the federal battle that we will continue to do.
Speaker 1:It's important that many housing accessibility issues are addressed at local and state levels. Building codes, zoning laws, parking requirements and fair housing enforcement all happen closer to home. A disabled homeowner's rehab standing and credibility to advocate for the local changes and to give you some inspiration, please listen to one of my podcasts when I interviewed the building, just to give you some PG County, prince George's County in the state of Maryland, two years ago, passed a universally designed requirement for 50% of all private sector housing. Yes, you heard me, it's not all inclusive, I'm not going to say that, but it certainly is a step in the right direction and it will begin to take effect in 2026. And that was a local advocacy, a local push, and it can actually really be a groundbreaking legislation for other states to follow and yet develop it. And I talked about this in a prior episode when I did interview a representative from the Maryland Builders Association. So please listen to that if you want to learn more information.
Speaker 1:We made our advocacy powerful. It wasn't just that they enrolled on Capitol Hill, it wasn't just numbers, it was our stories, don't get me wrong. The 10 to 1 for handicap parking ratio, the 14-day to six-month waiting time to get your wheelchair repaired. Those are important stats. Those are important data, but what made it really powerful was at least to what moved our lawmakers was when we connected those numbers to personal stories about missing work due to broken wheelchairs. I've done it of our messy work due to broken wheelchairs. I've done it being unable to visit family because of parking barriers or facing those choices between keeping our homes and our healthcare.
Speaker 1:Every disabled homeowner has stories that illustrate this, the policy failures. Share them. Share them. Share them with your episodes. Share them with your local media. Your neighbors Ask your neighbors to get involved. Say can you spare 15 minutes? I'll talk to you 10 minutes. Five minutes, you can leave a voice message, I'll do it. First you can see how it's done. But your stories matter. Your stories matters.
Speaker 1:If that's why I'm encouraging everybody to continue to educate, if you are in a wheelchair, think about joining the United Spiral and Core Injury Association. It's a national organization, as I mentioned. Join your local chapter. If there's not a local chapter, start a local chapter with them. They are the ones that got the stats about the handicap parking. It wasn't the federal government. They reached out to all states and asked for their data. And it was literally a grassroots of disabled individuals reaching out to state individuals, so to speak, and asking for the data that they do have. And it's all pulling that information together, crunching those numbers and say here, voila, this is the number. Together, crunching those numbers and say here, voila, this is the number. So it does matter. Please get involved in United Spinal Cord Injury Association. You can also get involved in DAPT or any other disability organization.
Speaker 1:Just get involved and share your story and reach out to me. If you are a disabled homeowner yourself, I would love to hear your story and tell me. I would love to have you on here. I've had several disabled homeowners in my other podcasts tell their stories and I learn something every time and I'm sure somebody just becoming a disabled homeowner whether or not they were disabled before they bought their home or not that is something. Sharing those stories and success stories can help those individuals as well. So thank you so much for joining. Horizontalhousescom is the hub for all things related to disability home ownership. You will find my blog, this podcast, my book and how my consulting services can help real estate agents or housing developers market and tap into the largest minority group, the disability community. Please help me continue this exploration of disability home ownership by connecting through my Facebook page. Remember, sharing our collective experiences will allow us each to lower the kitchen sink but raise the bar for disability home ownership. Thank you,