Navigating Disability Law: A Deep Dive with Advocate Turned Attorney Bryce Rafferty

Speaker 1:
0:02

Welcome to EndoBattery, where I share my journey with endometriosis and chronic illness, while learning and growing along the way. This podcast is not a substitute for medical advice, but a supportive space to provide community and valuable information so you never have to face this journey alone. We embrace a range of perspectives that may not always align with our own. Believing that open dialogue helps us grow and gain new tools always align with our own. Believing that open dialogue helps us grow and gain new tools. Join me as I share stories of strength, resilience and hope, from personal experiences to expert insights. I'm your host, alana, and this is EndoBattery charging our lives when endometriosis drains us. Welcome back to EndoBattery. Grab your cup of coffee or your cup of tea and join me at the table.

Speaker 1:
0:46

Today I'm honored to introduce a guest who brings not only deep expertise but a unique lived experience that shapes his work and advocacy every day. Joining me at the table is Bryce Rafferty, a staff attorney with the Colorado Cross Disability Coalition. Bryce is not just an advocate. He's also someone who knows firsthand the challenges of living with a disability. His journey has given him a perspective that many in the legal field don't have, and it fuels his commitment to supporting those with invisible and visible disabilities alike, allowing him to connect with and truly understand the people that he advocates for. He's someone who not only speaks up for others, but has fought his own battles for access and understanding. Today, he brings both heart and expertise to the table, working tirelessly to ensure that everyone has a fair chance at a fulfilling life, regardless of the challenges they face.

Speaker 1:
1:41

Please help me in welcoming Bryce Rafferty to the table. Thank you, bryce, so much for joining me today, and I appreciate you taking the time out of your busy schedule to sit down with us and talk about your passion, which is disability and law. So thank you so much for joining me at the table. I appreciate it.

Speaker 2:
1:56

Of course.

Speaker 1:
1:57

Can you tell us what it is you do with the Colorado Cross Disability Coalition? What's your role and what is the Colorado Cross Disability Coalition? What's your role and what is the Colorado Cross Disability Coalition?

Speaker 2:
2:06

The Colorado Cross Disability Coalition is a statewide nonprofit that is a collective group effort at what is called integrated advocacy, and by that term I mean that there are various all disabilities really. That's the cross-disability component of it, and integrated advocacy is both geographical and issue-related. So we have, for instance, I'm involved with a Medicaid eligibility and appeals team. They meet every morning to discuss the cases that they're working on with people all around the state who are being denied everything from effective services by Medicaid to durable medical equipment to Medicaid coverage and eligibility. In the first place, complex, it's mostly administrative law in terms of how disability law and the laws that control disability are enforced and administered. And what I do is they threw me kind of all over the board. So I actually volunteered with CCDC initially back 10 years ago and that was really what got me started on my legal journey, because I was doing this volunteer advocacy and said, hey, it's great to be able to go down to the Capitol and testify for a bill or go to a hearing and give my input, but I could really make some moves and some changes and have a more profound effect on other people's lives in my own life by going into law. So it really wasn't something that I had planned on doing. You know, as a kid, when I was having arguments with my parents and winning them, they told me that I should be a lawyer and I said, not a chance, it's in hell. But here we are, and so it's actually. But here we are, and so it's actually. It's interesting.

Speaker 2:
4:10

You know, the disability got me into the world of advocacy, which got me into law, which then returned me to the very advocacy nonprofit that started it all. So, yeah, the Colorado Cross Disability Coalition does the integrated advocacy and it does Medicaid, it does litigation and cease and desist and demand letters to basically try to enforce the Americans with Disabilities Act and there's various titles of that. We can go through that and there's other laws as well. But in a nutshell, ccdc is really an all-encompassing organization that advocates for people who need help navigating a very complex system to get the benefits and services that they need to be as integrated themselves as much as possible within society but also get the needed services and supports to do so. So we kind of step in to help people navigate a very complex system and that takes on a variety of different shapes and forms and formats.

Speaker 1:
5:14

I can only imagine how challenging that can be. I think for a lot of us within the endometriosis community, this is something that we struggle with, because this is not often seen as a disability for many. But when you are crippled in pain for days, if not all the time, due to this disease, it is a disability, but it's just not recognized as that, and so I think the challenge therein lies that what qualifies something as a disability? When you are talking about the ADA or anything like that, what do they quantify as a disability?

Speaker 2:
5:50

Oh, you want some legal jargon. The ADA defines disability as any kind of condition, physical or mental impairment that substantially affects or limits a major life activity, and so you're going to have a lot of argument over what does substantially limits mean? What's the major life activity?

Speaker 1:
6:16

Right.

Speaker 2:
6:17

And there has been, and there will continue to be, a lot of litigation and argument about that. There have been actually recently. This is one thing I'm working on. I am putting into plain English, as best as I possibly can, a bunch of new rules and regulations that are correlated to the Rehabilitation Act, which is kind of a sister act of the Americans with Disabilities Act, and how these laws work, at least federally, and I mean it's similar with states. But I mean you take Congress right, and so Congress identifies a problem and in the case of disability it's okay. We have a very large subset of our population that is not integrated into society. They're not in the workforce, they're not able to have independent lives. These are people who are capable of and want to be in society, but they're in assisted living facilities under very difficult conditions, often having to deal with neglect, abuse. So the whole idea really and this came out of the culture revolution in the 60s and 70s Initially the Rehabilitation Act was passed in 1973. Americans with Disabilities Act, the ADA, was 1990.

Speaker 2:
7:40

And then there's a bunch of case law and courts were passed that go into great depth and help in defying disability.

Speaker 2:
7:52

They take that definition that's in the ADA, you know, substantially limiting major life activities and what an impairment is, and people might have heard about the Supreme Court decision that overturned Chevron, and I mean you might like hear that phrase and have no idea what it means.

Speaker 2:
8:10

But basically what it means in practice is that Congress and other administrative agencies, like the Department of Health and Human Services, for instance, in this case have to be extremely specific when they are defining both who benefits from certain rules, how they're supposed to work, what context they apply in, where they don't. And so these rules that were just promulgated and went into effect in July, I believe, go into great detail and they add chronic fatigue syndrome, they add COVID, they add a lot of invisible disabilities, which is great to see because that is a very underserved population, to your point. So, generally speaking, the law really defines disability in that kind of big umbrella term of an impairment that substantially limits a major life activity, and we're getting a lot more help from the Department of Health and Human Services in defining what all those elements are and providing like a ton of examples, which is great.

Speaker 2:
9:13

Yeah, because then you can't argue that in court, or you can point to an actual regulation and get an answer.

Speaker 1:
9:20

How does that translate, though? I mean, the law goes into place, but how does that translate in real life? Because I feel like a lot of us, especially with the invisible chronic illnesses that people don't see on the outside that are limiting our ability to work, our ability to do basic life functions sometimes, which is grocery shop, clean your house, sometimes go to the bathroom, all of these things. It's limiting. But because it isn't a visible physical disability, we come up against employers who are saying you can't work here or you get you know they fire you after a certain amount of time because you can't work. But then we also don't get benefits, oftentimes because it doesn't qualify to some people. Or how do we fight that? How do we put this into play? I guess is what I'm trying to say.

Speaker 2:
10:07

Yeah, so complex question, simple answer. If we as a society want to be inclusive, actually providing equal opportunity to people, everyone, every group, then we have to provide the means through which those people can achieve those ends. And you do that by meeting them where they are. And you can't do that unless you're willing to listen, acknowledge problems and petition your elected representatives to do something about it. Because I mean, in the court system, most of the time you're arguing about the words put onto paper by people that you elect to make laws right. So when it comes, I mean, for instance, for me, I got my law school paid by a state entity called the Division of Vocational Rehabilitation. I applied, I gave my counselor who, julie Ambrosio shout out, absolute hero gave her 80 pages of an application of why I should be granted the money to go to law school, what I plan to do with it.

Speaker 2:
11:22

you know what the employment situation was looking like in terms of the field, its growth the opportunities that would be awaiting me when I graduated and that was granted to me, and they paid for everything from the tuition to my books, to parking, to bar prep courses, and I mean there's a lot of supportive services that I think are needed, but there's also a lot of understanding that needs to occur and learning from employers, because the positions themselves are not built to be able to be performed by many people with disabilities, capabilities people don't understand. Like for me as a quadriplegic, it takes me three, three and a half hours after I wake up to be ready for the day. So I need home health care. I need to get all these things done.

Speaker 2:
12:13

I get up, I need to go to the bath, take a shower, get dressed, get in my chair, get positioned. I mean. Then I have an adaptive van that I drive from. I have to be in a power chair to be in that. I have to pack all my things that I need for the whole day, and then I also have the need of a home health aid at night. So I have a bedtime. I'm 35 years old, got a bedtime 9 o'clock, knock, knock, okay, my day's over, so it's truncated.

Speaker 1:
12:41

Right.

Speaker 2:
12:41

So if I'm going to do 40 hours a week plus, get everything I need you know, errands done, doctor's appointments done, get into the gym to make sure I'm like, I'm actually healthy, I'm having time to eat. All of that I mean like realistically, no, I may not be able to do 40 hours a week. Right and that immediately is going to eliminate me from the pool of candidates for 95% of jobs. It's not that I can't do the work, it's just that I need accommodations.

Speaker 1:
13:16

Right.

Speaker 2:
13:17

Maybe I need to work 36 hours, maybe 20, maybe 38.

Speaker 2:
13:21

I mean, you know, and oh yeah, I'll need some dictation software, but with the right equipment, with the right understanding, I mean, can I perform the job duties of you know a given legal position as well, or potentially better, than another candidate?

Speaker 2:
13:38

Yeah, but instead of embracing the unknown and working with people with disabilities and working to understand the need to actually put people with disabilities in positions to succeed, I think employers are just looking at bottom line and they see a person who wheels into an interview or who mentions that they have a disability in the interview if it's invisible.

Speaker 2:
14:02

I'm very passionate about this point because if we as a society really want to be inclusive, then we really need to understand that we need to have people in the workforce. We need to provide them with the means to get educated, means to get jobs, means to have independent lifestyles, families, and if we don't, then we're going to have a society where people with disabilities they have no incentive to be able to get off of Medicaid or Medicare be able to take the leap out of their parents' homes if they're disabled when they're born or before they're adults, and or to continue living if they're disabled once they're an adult. I mean I can stop and unpack a lot of these different areas, but really what we need to do is we need to provide the same opportunities of education and employment to people, and people with disabilities need to be seen in society, and to be seen, you have to be independent.

Speaker 2:
15:08

And that means you have to have an education and you have to have work, but if we do that, it's going to have significantly less burden on the budget as well.

Speaker 1:
15:17

Yeah, absolutely.

Speaker 2:
15:18

So I mean, it's really a win-win when you think about it, because you're going to also bring in all these different perspectives to different lines of work, everything from art to law to finance, and so really it boils down to if we're going to have people with disabilities in our society, then we should treat them the same way that we treat everybody else, and that means taking some extra steps and being willing to learn about what those steps are.

Speaker 1:
15:47

We all. I think there's that desire too to be productive members of society and I think the more that we can accommodate disability, invisible chronic illnesses, the more productive society is as a whole, because then if you're not accommodating that, you're excluding some pretty potentially powerful people from accomplishing great things within society. I know there are some protections in place for those who have a disability and who are in need of aids and stuff like that, but invisible illnesses often I feel like we don't feel protected by any of those things.

Speaker 2:
16:23

Yeah, I mean there are protections on paper broad ones but what happens? Take Colorado State Medicaid. I was just looking at a whole 400 pages worth of rules for case management. There was a glaring absence of specificity, definitions, even people like supportive decision makers from these rules and as an advocacy nonprofit CCDC myself and a bunch of other people in the advocacy space you can go to these monthly medical service board meetings. They're once a week. You can give public testimony to anybody. Medical service board meetings they're once a week. You can give public testimony to anybody. Now is that going to affect the rule and the language in there and how it manifests in practice? Well, it depends on how many people testify, I suppose I mean if there is enough demand for things to change in our system.

Speaker 2:
17:20

I mean, change happens slowly, but I mean, you know, 100 years ago women couldn't vote, I wouldn't be alive, you know.

Speaker 2:
17:29

And here we are. So change is possible, but you really have to advocate for it and you have to know where and how to do that. And I think the problem is that a lot of these protections, especially for people with invisible disabilities, are just not well informed. It's not the people writing the rules have no idea what they're doing, right, they probably are, you know, influenced a lot by Wall Street. People don't know this, but Deloitte, a Wall Street entity, you know, financial institution is about to run Medicaid for like 26 states through algorithms, and those algorithms will determine eligibility, whether or not you get approved for a surgery, and the test run has been catastrophic in states like Tennessee. But these big changes are happening. And so, going back to your question, the protections for people with invisible disabilities exist broadly with these big statutes and laws, but they go into play administratively and Congress and the Supreme Court really give states a lot of deference and you know states are constitutionally speaking in charge of and they have primary concern and responsibility for public health and safety of their citizens.

Speaker 2:
18:56

So that gets translated into each state's unique Medicaid and Medicare. Medicare is more uniform, but I mean Medicaid is different in every state. Like Colorado is totally different from, say, like Iowa or North Dakota or Alabama. So that means it's tricky, but it also means that the people in each state have an opportunity through rulemaking processes, because there's notice of proposed rules, there's opportunities to give public testimony, but there's also if you are able to get into a group of people and advocate, whether that be through a lawsuit or just through educating yourself with what the laws are and what the rules are and what needs to be done to improve the situation. I think people realize they have a lot more power than it may seem Interesting.

Speaker 1:
19:55

But that's a big overview of it. Maybe progress doesn't happen as fast is because it is so convoluted. And when you're dealing with a population who typically has chronic fatigue, chronic pain and brain fog, it becomes very unattainable to a lot of people because it's not accessible to them in their ability to take the time to learn it. A lot of times, if they're not, if it's not their job, if it's, you know, it's very, very hard to pick up all of the nuances of these laws and regulations. So we just don't, and it's because we're tired. We're a tired population, you know.

Speaker 1:
20:35

And it's not user-friendly for those of us in this population who struggle to just maintain everyday life.

Speaker 2:
20:42

to pick up one more thing, that's very convoluted, oh yeah, and that's the trick too, because, for instance, I remember I was I've done a couple of appeals for myself and I mean I know how to advocate for myself and I don't have chronic fatigue syndrome, although I do have chronic pain. I do have a lot of other things that get in the way. Right, but through the appeals process, through Medicaid as an administration, they do have what they call the Office of Administrative Courts, so I mean you can write these appeals and submit them, but what I learned is that after I did one before law school and then in my final year of law school and I got denied a piece of durable medical equipment that I really should have gotten us to, court I said well, that's amazing.

Speaker 2:
21:51

You're telling me that I am in a population of people who are disabled and or without sufficient income so as to qualify for Medicaid. But to advocate for myself and to point out that you're breaking federal law, I have to somehow find money or somebody to represent me in court. How does that make it? It doesn't make any sense.

Speaker 1:
22:17

No.

Speaker 2:
22:19

And the people who are in the advocacy world are phenomenal. And there's this big misconception, I think, about lawyers. I just have to give a shout out to the profession. There's a lot of people out there. Legal profession has gotten a lot of heat because of politics, because of some bad actors out there who are high profile, because of some bad actors out there who are high profile. There's so many people who really care, who really work hard in government, in nonprofits, in private practices, and they're really working hard because they give a damn Right and we need more people like that.

Speaker 2:
22:56

But people are people Right, Whether they're disabled, whether they're white, whether they're brown, whether they're living here in Colorado or in Bangladesh society. And we're going to put a little extra effort into this cause and demand that to be a reality for the people who can't do it because they have disabilities that prevent them from doing so themselves. So if you really want equality and you want diversity, equity, inclusion and all that good stuff, you can't just like pick one subcategory of that. I mean, you really have to demand the grand scale of it. I mean it should be a goal and a process that never really gets achieved because it's continually getting better.

Speaker 1:
23:56

Right, it's an effective ecosystem. That's what we want, right? Yeah, it's the only way to do it.

Speaker 2:
24:00

It's the only way to do it. You can't just say, okay, well, all you people in wheelchairs get together and make change. I mean it's not realistic, right. It ain't going to work, right.

Speaker 1:
24:11

Well, and that's like putting all the chronic illness people who do have chronic fatigue or chronic pain and saying you do all the work, Well, we go and play. It doesn't work that way.

Speaker 2:
24:21

It's while we go play golf and have a club sandwich, I mean it doesn't work that way, no it doesn't, and it's like, it's blunt, but like I say this to myself a lot If you're going to keep me alive, save my life and you know, put some metal on my neck and give me a nice wheelchair and all that jazz and, you know, some, some health insurance. Shouldn't it be a little more than that? Or are we as a society okay with people making money off of my condition for the rest of my days, and that being my contribution to society, absent me taking extraordinary efforts to get really a suboptimal ultimate reality? I mean, like Medicaid is the only insurance that will pay for home health care that I need every day of the year.

Speaker 1:
25:13

Interesting.

Speaker 2:
25:14

The only one, wow, and Colorado for only maybe 10 to 15 years now has had a waiver of Medicaid where I can actually work and make a decent amount of money. But there's still a ceiling.

Speaker 1:
25:28

Right.

Speaker 2:
25:29

So because I'm more, I get punished for trying to be independent, interesting In the sense that I'm only allowed to make a certain amount of money. Otherwise, you know, if I make more than X dollars a year, then I have to pay for all of my home health care or get like 120 days, I think, of coverage, and I'm pretty sure the insurance, would you know, mandate that I go with a certain home health agency and right now I'm on a waiver where I'm able to hire and pick and choose my own home health aides and have a phenomenal team right now. But I mean, that's a huge problem too. It's a whole nother conversation, that's interesting.

Speaker 1:
26:11

We see this even, I think, in the Indo community of like. The role that money plays and the ability to like get proper care is so limited. So, for endometriosis, because the laws in place are based off of an outdated theory, many of us will go through surgery after surgery, after surgery after surgery, instead of getting the proper surgery the first time, and so it's really frustrating, because we could ultimately save not only the system but many other things, including ourselves, and have a better quality of life. We could save so much more money overall. But because money is at play and you talk about, you know, wall Street owning the Medicare system For us, it's big pharma for a lot of people because they want to do medical management as opposed to actually getting to the root of the issue, and that poses a lot of issues when it comes to trying to access proper care and treatment, because of this outdated theory and because big pharma is dictating what is proper care and treatment as opposed to what is proven to be proper care and treatment, and so it just is like this mangled mess that is costing us, the ones suffering the most, money, time, energy and effort, and it gets overlooked by those who are unaffected by this disease, and so I think that becomes more of an issue because we as a community struggle trying to get accessible care without the ability to work for it, because we're tired, we're really honestly, it is such a there's so much nerve involvement, there's so many muscular things involved and breathing and whether you have thoracic endometriosis or not depends on whether you can work.

Speaker 1:
27:58

So we can't work to get the proper care and treatment, to pay out of pocket for the correct providers, but additionally, we can't even attain it through the insurance companies because they don't see it as the proper care and treatment. So it's kind of a very that's a very convoluted way of saying we're very much in this damned if we do, damned if we don't situation for a lot of us and that's where I think a lot of us are like what are our rights as people with invisible illness? You know, what do we need to do to attain certain disability rights? Because we feel like we don't qualify for either or, and I don't know the answer to that.

Speaker 2:
28:36

Well, that's an existential question. I got injured in a country called Switzerland. In Switzerland, healthcare is a right, not a for-profit industry. In America, when you talk about big pharma, you talk about the health industry generally. It's a bottom line for-profit industry. If you have a for-profit anything, the incentives are going to be to profit.

Speaker 1:
29:00

Right.

Speaker 2:
29:00

And the healthcare context to profit continuously. You're going to need sick people Right, and a disabled person is a dream for a for-profit system because you need continual care for the rest of your life. Cures are the antithesis. Right Preventative treatments, medications every day. Why are Americans on medications every day?

Speaker 2:
29:22

And you go abroad and people are like drinking tea, eating In Switzerland. It was crazy because I mean, they're not part of the EU so they don't have all the processed food. But to take it back to disability and health, so I get injured in a shallow water diving accident with someone. I'm 20 years old and I am five days into a study abroad semester in college and the Swiss gave me the green light to go to their premier spinal cord injury facility, to SPC in Lucerne. Now I also went to Craig Hospital here in the States and this is not a slight at all. On Craig Hospital, I love Craig Hospital and it's one of the best institutions for spinal cord injuries and brain injuries in the country. The difference is at SPC in Switzerland. First of all, the facility. Everything was integrated. They had their own ICU, their own surgical unit, they had 170 beds. They had a ton of outpatient services as well as inpatient services.

Speaker 2:
30:23

It was also the headquarters for all the Swiss Paralympians and Paralympic teams. It had sports facilities, basketball courts, pools that were also used by the community. But the plan of action for a new injury like myself was as a quadriplegic, you're there for nine months. If you're a paraplegic, which for the audience means you know you have generally full use of your arms and full dexterity, so I mean you can kind of transfer yourself. You're in a manual wheelchair. I mean you can kind of transfer yourself, you're in a manual wheelchair, your upper body looks totally normal, but still like six months, nine months for a quadriplegic. I mean at Craig Hospital you're lucky to get three.

Speaker 2:
31:05

Wow. Now here's the difference Nine months inpatient at that hospital, spz and Switzerland not only gives your body enough time to physically recover but it also gives you enough time to learn how to be functional. You know, for instance, you learn how to do all the transfers that you're going to need to be able to do, how to take care of yourself. They work with you to modify your home, get that done while you're in the hospital. They work with your employer to get you the reasonable modifications or accommodations that you might need If you have the function to be able to drive.

Speaker 2:
31:42

They teach you how to drive and either put adaptive equipment in your existing vehicle or help you get a vehicle that you can drive by the time you leave SPZ, you have done the amount of work and growth, or at least planted the seeds for growth, that you would be lucky to achieve in five to 10 years at Gregg Hospital as an outpatient coming back for yearly re-evaluations.

Speaker 1:
32:08

Thank you for joining us at the table this week. If you found this episode inspiring and thought-provoking, join us again next week as Bryce continues to enlighten us on different aspects that he's learned about, not only law but personal experiences with disability. Until next time, continue advocating for you and for those that you love.