From Sky news this is connections.

I'm Evan Dawson.

Our connection this hour was made on April 29th in Albany, when the New York State Assembly passed the Medical Aid and Dying Act for the first time by a thin margin.

Following hours of debate, it was nearly a decade ago that Canada passed its own made law and made standing for medical aid in dying.

And since then, advocates in New York State have called for the same kind of legal option for patients who have a terminal diagnosis.

The new legislation would have strict parameters about who can die with the assistance of a physician.

It would permit certain terminally ill individuals, those who have received a terminal diagnosis and a prognosis of six months or less to live, to receive a dose of medication to end their life.

Two doctors, including the patient's attending physician, would need to agree that the person is of sound mind and qualifies under the law, provided the person meets all of that criteria, they would receive a prescription.

Now, this is a special edition of connections, welcoming a live audience and focusing both hours on issues related to disability and caregiving.

Next hour, we'll focus more deeply on dementia.

This hour, we explore who is included when policy gets made and who is not.

We'll talk about how the disability community's voices might impact the ways our society is structured.

We'll talk about how caregivers see these issues, and we'll welcome your feedback, whether it's on legislation commonly referred to as medical assistance in dying or other issues, this this hour is going to cover a wide range here.

The disability community, of course, is not a monolith.

There are a range of opinions on issues like medical aid and dying, along with many other contentious proposals.

In Canada, the Maid law has expanded much more broadly over the years, and now some disability rights advocates are saying that it pressures some people with disabilities to end their lives, even without a terminal diagnosis.

We'll get to that coming up.

We want to start a discussion and whose voices are and need to be included generally.

And let me welcome our guests this hour.

Right next to me here in our studio is Heather Burrows, a caregiver for her daughter, director of advocacy for autism.

Welcome.

Thank you for being with us.

Thank you.

Also with us is Chris Hildebrand, executive director of the Rochester Spinal Association.

Welcome back to the program.

Chris, thanks for having me.

And welcome to Brian Weber, football and wheelchair rugby coach.

And an advocate now himself.

Welcome, Brian.

Thanks for being with us.

Thank you for having me.

This is the one time I will say to the audience, will you let our listeners everywhere know you're here with a little applause for our guests?

Welcome.

Thank.

It's nice to have all of you with us in studio.

I want our guests to tell you, the audience, a little bit about themselves first, because everyone here has different experience advocating or with their own life experience.

Chris Hildebrand, I'm going to start with you.

we were talking before the program.

How long you've been in this particular position?

But your advocacy goes back.

How long now?

well, I guess in a way to.

When I became injured, I broke my neck in a diving accident in 1990 when I was 14 years old.

so a little self-advocacy for myself for the first decade or so.

And then a paid professional advocate beginning around 2000.

How much have you seen in the 25 years of doing this professionally?

How much have you seen people in the disability community actually sincerely included in policy making?

And what's the difference that you would say you've seen over time?

I would say peaks and valleys that I think there are some ways in which we've been included and we've seen good progress.

and then some areas where where people are frequently excluded or entirely excluded in areas in which we've seen little to no progress since 1990.

Is it, is the kind of exclusion you're talking about typically just oversight?

Because maybe well-intended politicians or people in policymaking circles just don't have experience?

Or is it something more malicious and intentional?

It's both.

I think often it starts with an attitude.

that there's an attitude that presumes that people with disabilities are not capable.

so a lot of, you know, policymakers may presume that they should turn to the parents of a disabled person or, unions sometimes speak for the disability community or, a spouse or a loved one.

there's a lot of presumption that we cannot speak and advocate for ourself.

So there's sort of an attitude that that starts that overlook, sometimes it's maybe more malicious that we're viewed as expensive.

so there's a, an actual like we don't want them at the table because to do what they're going to ask may inconvenience and cost us more.

Well and for you you were 14 when you got injured.

you know you're not yet an adult but obviously your life is changing.

How much did you see maybe in your early adulthood that either frustrated or confused you.

I mean were there obvious things that you thought I can't believe society is structured this way.

I can't believe this isn't here or this is here.

Yeah.

I mean, I was fortunate that, literally, I think two months after I was injured, the Americans with Disabilities Act was signed into law.

took several years before you started to see any impacts in community.

but then after that, you know, we would start to see the physical environment changing and improving.

You know, but certainly my first few years and then for a number of years after that, things that everybody else may take for granted that you're going to a restaurant and you're going to be able to get in.

I couldn't take that for granted.

so call and ask, can I get in?

then learning like.

Oh, just because I can it can get in doesn't mean I can use the restroom.

so inaccessible restrooms, restroom doors that are, you know, 20in wide when a wheelchair is 30in wide.

That that was very common.

you know, and just emphasizing, again, that's just the built environment.

For a moment, I thought you were going to take credit for the Ada.

Yeah, but you can take credit for a lot of incredible advocacy in this community.

And so when you talk about even just bathroom stalls and doors and, restaurant access, how much better is it now?

I think the physical environment has improved significantly.

there's, there's a mythology about like, oh, well, my business is grandfathered in, like, well, no it's not.

that almost certainly every place should be fully in compliance with the Americans with Disabilities Act at this point.

but in terms of the built environment, we've seen a lot of progress parking and access to buildings and restrooms and, you know, even beyond that, sometimes, having lighting to help highlight a sign language interpreter at a big event, things like that.

We've seen progress.

not so much.

Things like employment and employment of people with disabilities is still essentially the same rate as it was in 1990.

Is that the you know, the big one?

Is is there a big either objective or goal that you look at and say, you know, we've made a lot of progress in a lot of places, but not nearly enough right here.

I think employment would be sort of it's the, the icing, the that we should be able to take it for granted, but we cannot.

but before we even for for many people in our lives, before somebody is even concerned about employment, it's more like, do I have a secure house that I can live in?

You know, do I have home care workers that come and show up on the time reliably when I need them?

Do they do the work that they need?

You know, so there's sort of a Maslow's hierarchy of stuff that needs to happen even before we get to things like employment and education.

Well, Brian Weber, I want to give you some space to tell your own story.

And so tell the audience a little bit about yourself first.

So, mine's Brian.

I was paralyzed.

What's going on?

14 years in July?

I was 27 years old.

I was at the beach, and, stand.

It was in the water, about, like, chest high.

And I want to go, like, just kind of like, jump back, flip back, dive back.

I don't know whatever you want to call it.

And when I threw my head back to jump backwards, or, you know, flat backwards, I pinched my spinal cord between my, C3 and my C4 vertebrae and kind of like, when went went down.

And luckily, my friend, when she was standing there with me and realized something wasn't right and kind of like, you know, made sure that I wasn't going to, wasn't going to drown.

And then, you know, they got me out of the water and stuff like that.

And then my, my journey in the, the, disability community kind of began from that day.

Yeah.

And you were 27?

Yep.

So I was, you know, a few years before that, I graduated from, Suny Brockport with a degree, and I was working at, Skyline Mosaic, high school.

Middle school as, as a building sub.

and I was also coaching football at the time, the I got hurt in July, so I missed that football season.

And then I made it back for the next the next one.

And, I was just there, you know, I was that I was there gates for about, you know, 13 years or so.

And then, just recently, last year, one of my good buddies, became the head coach at Pittsford.

So I decided to make a little, move across the across the city, the city border.

And, you know, I coach at Pittsburgh now.

Okay.

And coaching football.

Yep.

Okay.

And still loving it.

Oh, yeah.

It's fun man.

Keeps me active.

It's fun for all kids.

You know.

To Chris's point about how society has changed in hopefully in some ways progressing for the better.

I'm curious to know how kids respond to your coaching.

And, you know, given the fact that you obviously you have a disability.

do kids do the other coaches, do they respond to you?

Have you noticed any difference?

Not.

Not really.

No.

It's great.

Especially when, I mean, they all knew me.

it gets like, you know, when it happened and stuff like that.

And, you know, there was a big, community, you know, fundraisers and all that and events for me and stuff like that.

But they all knew me beforehand, and so they didn't really, you know, when I came back, they might have been they might have been more, you know, reserved at first, like, okay, what's this?

But then they realized, like, you know, I didn't really mentally, I didn't really change at all.

Just I just couldn't really, you know, obviously I couldn't be out there, engaged as much as I used to be, but, yeah.

No, not.

No, there hasn't been really any, you know, it didn't take, me or them too long to, you know, get acclimated back to each other and stuff like that.

How have schools and sports facilities been in accommodating your needs as a coach with the disability?

well, it's getting better nowadays now that all these school districts are putting turf fields in.

Now, I don't get stuck in the grass and in the mud, in the middle of a game, you know what I mean?

But, but for the most part, you know, they're all pretty accessible.

most schools, obviously.

I mean, they kind of have to be now.

so.

Yeah, they're they're pretty good.

I mean, pretty good about stuff.

I mean, when it gets raining and stuff, I mean, that's all on me.

I got to have, like, you know, an umbrella or a poncho or something like that, but, other than that, like, you know, it's all.

Yeah, I have free rein.

I can get out on the field.

I can, you know, give us a room in the school.

I can get into the school and whatever, you know, the gyms and stuff like that.

So you and I spoke a little this morning, and I'd like you to share with the audience some of what you said that you encountered after your injury in terms of starting to see the things that, were surprising to you or frustrating to you about whether it was caregiving, whether it was about rules and what was allowed, what was covered by insurance.

Can you take us through some of that?

yeah.

It's it's it's tough because it depends on what kind of programing around.

But like for me, luckily from and as far as like the caregiving, aspect that I'll start there is so I'm on, the CPAp waiver and so I'm able to hire my own, find my own aides, hire my own aides, find my own age, whatever you want to, what you want to do.

And there's.

And so it makes it a little bit easier on me.

I mean, it's not it's I shouldn't say it's easy because it's not really.

It's not like, you know, you know, you go to the store and you pick out like someone to come and help you out, you know, I mean, you gotta.

Yeah, yeah, I do a whole vetting process and sometimes that doesn't even work for you.

But, I was I've been able to find, pretty decent.

I got four girls that work for me right now, and they help get me up in the morning and and get me washed up and and all that kind of stuff, and, and then throughout the day, like, I have, I can employ, like, my parents and my or family members and stuff like that.

So throughout once I'm in my chair and I don't really all I really need throughout the day, someone maybe to give me a drink, for the TV channel, here or there, you know what I mean?

But.

So, but it's.

Yeah, it was a it was a it was a big wake up call.

You're like, okay, now I got it.

This is a whole nother aspect of life that I have to deal with, you know what I mean?

And then and then, like, me and Chris were just talking, and then, you know, when you're more age, you have, the more caregivers you have, you know, then you're dealing with their lives.

Also.

They have kids, they have families, you know.

And so it's like, you know, sometimes, you know, it's a scramble.

You need someone like most, most of mine are pretty reliable.

and, you know, but, you know, when someone needs a day off or something like that, then then it becomes a little bit of a scramble to try to figure out, okay, like, you know, who's who's who's available, you know, what schedules we have to change around and all that kind of stuff.

But for the most part, for me, it's been pretty.

It's been pretty good.

past, knock on wood, 14 years, I've, I've been, you know, pretty spent pretty good.

Yeah.

I was a little surprised.

I had never met anybody who didn't love their insurance.

And the American charities until you, tell me a little bit about dealing with insurance and what you've learned there.

it's it's a hassle.

especially when you need.

So for me, I'm eligible to get a wheelchair every five years.

and the process begins, you know, you you can begin the process, maybe, like, you know, start getting things together and thoughts and, and, ideas on, like, you know, you know, start filling some of the paperwork out.

and then, you know, once, once your due date comes up and you can start, you know, getting all the paperwork ready, and then it then, you know, you might start in, February and I might not get my chair until, like, you know, September or something like that because, you know, they have to get, you know, okay.

So on my power chair, you know, I got side pieces that keep me sitting, you know, straight up in and other things like that.

And, you know, they don't cover everything.

There's been things in the past where, I've had to pay out of pocket in order to, in order to get.

But it's something that I, you know, like, I, that I need my chair elevates to like, you know, I get to be, I want to maybe, like.

you know, maybe, like, around five feet or something like that.

And, so before the last two chairs that I got and I had to pay for that out of pocket.

But now for a reason, they decided to put that back, in, in coverage.

And then they take some stuff out.

They take some stuff, put some stuff in.

So it all, it's just, you never know.

What do you feel like when they make those changes?

You at least understand why.

And you can talk to people to explain how it not really shake your head.

No.

It's like if they would just come and take a look at you and they.

Then they would realize right off the bat, you know, oh, yeah, this guy needs this.

You know, I don't I but, but for the most part, it has been too bad, but it is frustrating.

Yeah.

And Chris, you and I have talked over the years about this maybe being a classic example of when the way our society is constructed without people with disabilities who are in the room to to set rules or policy, etc., you end up in a situation where someone like Brian is going, if you just come here, you will see that there's a real need here.

But for whether it's insurance, whether it's policy makers, if they don't have that experience, and it's almost like they want to challenge a claim or they don't see the need and that's it sounds like there's still some work to be done there.

Chris.

Yeah, that would be an understatement.

and, and I think one of the things, you know, that that unfortunately hasn't changed is it it's based for us.

It's based on a mentality that the person with disability will stay home.

Insurance is for things like durable medical, like Brian's wheelchair in mine.

They they legally are only obligated to provide you what you need to maneuver within your house.

and how, you know, just outmoded that mentality is and really counterproductive that if all we did was stay in our house like the depression, isolation and, the, the medical and health impacts of that would cost insurance actually a lot more than, you know, spending a few hundred extra dollars to give me a slightly better wheelchair.

so a lot of the mentality of insurance is just, you know, outdated.

Well, once the season start for you coming up here.

Right.

Well, we, we get together, like, throughout the year, on different, you know, different days here and there.

Just get the house and get the kids outside running around throwing a football around just to, you know, keep them engaged and stuff like that.

But, the, the beginning of the first practice isn't it isn't until, Oh, August.

Yeah.

Until August.

You got a little break, a little bit of a break, a little break.

We have some camps going on this summer for a week here.

There.

But other than that, yeah, from a fellow coach, it's hard work.

And then.

And then it gets going once it gets rolling, it's it's, it's, it's a snowball.

I mean, I can relate.

Well, I hope they appreciate the work that you're doing.

I want to give Heather some time to tell the audience her story.

Heather Burrows, a caregiver for her daughter, director of advocacy for autism.

the the floor is yours, Heather.

Thank you.

I grew up, with a sister with autism, but 50 years ago, people didn't know what that was, and we didn't know what it was either.

We didn't have a name for it.

Aaron was Aaron, and she might be a little quirky, do things a little bit different.

But my father was a school psychologist and he quite consciously decided that he wouldn't tell people about a diagnosis, because back then we were just allowed to stay in our neighborhood school.

It was the first time schools had to include children with disabilities, and even though that law was there, he was still afraid to get sent away.

So she got put in a behavior classroom.

Not the greatest choice for her.

there was a lot of, learning curve, and we just were doing things without even knowing there was a name for it.

I remember we were just we would do social stories for her where we would write out a script of what she could say when she was going to call somebody, or what to say to the teacher when she didn't understand an assignment.

Well, we'd practice it over and over again.

And then when I became a school psychologist years later, followed in my dad's footsteps, I was like, there's a name for this.

I remember coming home and telling my parents that this is called autism.

And my dad was like, yeah, we didn't tell people because we were afraid it would limit her because that's what the mindset was, them.

So she actually got through high school.

She went to our local college.

She got an early childhood certification.

She works three jobs.

She drives a car, she pays her own bills.

And she's one of my daughter's CPAp attendants for home care.

And it just shows you that having expectations and expecting people to achieve things outside of the home, to go to school, to have a job, be part of the community, we did something wrong along the way because Aaron's generation of people with autism, compared to the kids now, is radically different.

When I look at my own kids, I have four children.

All of them have varying levels of disability.

Three are diagnosed with autism, and they're all really, really different.

But they have the diagnosis and they have the accommodations and they have the resources.

And I remember thinking, that's such an advantage.

You know, they're going to do so well.

And when I had my daughter diving into is so medically complicated, I remember being really upset, but also thinking there are so many choices.

I mean, people were doing so many cool things with housing and now 15, 16, 17 years later, we have less choices than we did then we have fewer options.

And the home care piece is a really big deal for my family because Devon's medical needs are 24 seven.

So like you were saying, know somebody calls off, of course I am going to be the backup person.

But at the same time, I have a job and we have bills to pay.

And I can't be a paid caregiver because she's still in school.

So there's suddenly systems that don't talk to each other, and if they talk to us, we could fill those gaps.

We could we could explain how things could work better.

It was, what, 5 or 6 years ago that the issue came up with the service dog actually is when she was in kindergarten.

It was longer than that.

Wow.

But it lasted a long time.

Okay.

Would you mind telling that story a little bit?

I think this is an example of the, watching some of the interviews you did with local media back when this was really sort of roiling, I could see your frustration because you had a school district and then the US government comes in to represent you, but, you know, you're in the middle of it.

Your child's in the middle of it.

and it probably felt like you're getting pulled in all these different directions instead of getting people on the same team to deal with issues that, you know, to help a child.

Right.

As a school psychologist, I wasn't really used to being the professional at the table.

They could make a recommendation and everybody would listen, and that when I was the parent all of a sudden that I didn't know what I was talking about fairly, because then it didn't matter.

And then it did turn into a struggle.

And I want the New York State aid route first.

We got the Department of Education involved, and they froze the district's funding.

They said, your daughter has the service dog and they're not accommodating it.

They're saying because she's can't speak to the dog, the staff is not allowed to speak to the dog.

And I said that like, if you're blind, you teach somebody how to do Braille.

When they're nonverbal, you teach them to use a communication device.

How is this different?

You're teaching her to use this dog to help her with her independence.

And I couldn't believe they fought me on it.

You know, it was like a very hard moment, you know, where you're just like, you think you're in the right career and you think you're doing the right thing.

And I left after years and years in federal court.

It was eight years in federal court.

I moved to health care.

I don't like that.

I changed my profession.

I couldn't sit at the same table with the people.

They were telling me my daughter wasn't worthy of accommodation.

And the cool thing is, after eight years with the United States Department of Justice, we were able to set a precedent that said schools can't use a person's disability as the reason to deny them an accommodation.

They can't say you're too delayed, you're too complicated.

You may never be able to do this on your own.

So we're not going to try.

Now they have to show you what it was worth that we settled in 2019, right before the pandemic.

So I mean, to think about the timing of it.

She was in kindergarten, and it took until right before eighth grade for us to resolve it.

And I know they wanted me to quit.

And that's I think we run into that a lot that they try to tire you out, see how many times you'll fill out that form, how many times you'll show up to the meeting.

But I had to keep going because it wasn't just me and David and the dog.

It was a whole system that needed to know they couldn't do that.

Heather, I noticed some audience members really feeling like they wanted to apply.

You can applaud that if you want.

Thank you.

I know that was difficult for you.

So now, as you say, there are some things that are not better that the you know, in some ways you have fewer options.

what needs to what are the obvious goals for you in terms of, making sure policy looks reflects the needs of everybody and includes everybody at the table, caregivers, people with disabilities, etc.?

I think sometimes laws came out of Willowbrook and that was that really scary institution that everybody thinks of, and we locked the kids away in there.

And so not to go back to that, we made some protections and safeguards, like the settings rule that says, you know, if you have housing, it shouldn't be all people with disabilities.

It sounds so good from the outside, but they talk to us.

I would love to live in a community that had other people like my family, people that we could relate to, people that if we had a caregiver, she could just go next door and work with our neighbor and then come over here.

And it would make it easier when one of my children just having a hard time, they would understand.

But we're not allowed to do that in New York State.

the settings rule, the way we interpret it here is very strict.

So my house by law is really an institution because we have for people who have disabilities under one roof.

So if you think about the housing plans and the subsidies and the programs that we have, you can't have that many people under one roof and still get those things.

If you're in an apartment building and, the government realizes that everybody in the apartment building or that community has a disability, or there's a high percentage, they'll pull the housing subsidy.

And for a lot of us, that's the only way to live in the community and have our own place.

So I agree that they need to really consider the ripple effect of a decision.

It can sound really good on paper, but it doesn't work in real life.

You know, Chris said earlier this hour that when policy really isn't inclusive and doesn't meet the needs of this community, it can be because it is clumsy.

It is not ill intended.

and there are times where it is that's borderline or even malicious viewing a disability, the disability community, as Chris said, perhaps expensive, you know, and so what is your best sense of how where the gaps are coming from?

Malice.

just lack of education, ignorance.

I think there's a big ignorance factor in it.

And I also think that until it affects somebody personally, sometimes they just don't have a reference for it.

I mean, if we just look at what's happening with CPAp, it's such a great example.

I mean, if you tell everybody this program is growing out of control and we're we're not going to be able to sustain it and it's costing us billions of dollars.

There must be fraud.

The average person is going to believe them.

But if they had taken a look, they would have thought, people are moving out of nursing homes and group homes.

They're moving away from traditional home care that costs more money.

And migrating to this really cost effective option.

It was saving us money.

So now we're attacking a system that was actually the most cost effective one, and it's a mess.

I mean, my caregivers aren't getting paid consistently with the new rollout.

So I would say that I really wish they would have talked to stakeholders, all of us.

I mean, they can look at the provider, they can look at the person affected, the designated rep. That's what I am for my daughter.

Let's come up with a plan that makes sense and saves money but doesn't hurt people.

I asked, Chris and Heather a little bit about what they want to see change.

And Brian, you said that in many ways.

You know, you're doing the best you can 14 years on that.

you know, you've adapted in a lot of ways, but is there is there one big thing that you consistently encounter in our society that you say, like, not again, this has to change.

I mean, probably a few things.

just one thing that pops in my mind is, you know, just because it's we just started talking about this in our spinal association group is, handicapped parking situations and stuff like that.

And how.

Yeah, I mean, it's, you know, at times that's a little crazy.

And it probably that's another thing that probably could get crazy.

In what way?

As far as, the amount, the amount of people or, you know, you you talk about people taking advantage of, of a, program or a situation, you know, the amount of people that probably are don't have a disability at all but are using, you know, handicapped stickers.

you know, I'm at the store.

I mean, I'll go to the store all the time, and you see someone speeding to the parking to the handicapped spot, jump out of their car and sprint into the store, and they're parked in a handicapped spot.

And they got to, you know, I don't know if it obviously it's probably not their handicapped sticker.

It might be grandma, grandma, grandpa car or something like that.

But, you know, I mean, there's there's times and places, you know, I mean like, for it and then there's, you know, most of the time with that and then there's all, you know, the not just the, you know, the sticker part is you get some of these parking lots and there might be 2 or 3 spots and that's about it, you know what I mean?

So, you know, there's a lot of things that could get looked into that, you know, you just you, I you just can't come up with one, you know what I mean?

I think in my mind, but that's just one that does pop up.

Yeah.

We're talking to Brian Weber, who is a a football coach and someone who is telling his own story, of the injury 14 years ago that caused his disability.

You just heard from Heather Burrows, a caregiver for her daughter, her, her kids and director of advocacy with autism.

Up.

Chris Hildebrand, executive director of the Rochester Spinal Association.

This is a special edition of connections with a live audience.

Both hours devoted to subjects.

This hour, this hour.

Today focused on disability, caregiving and more.

We're going to take our only break of the hour.

And when we come back, we've got a little bit of feedback from the audience and a lot more to share with you.

Stay with us.

Coming up in our second hour, as we continue this special edition of connections, we look at issues related to disability caregiving and dementia.

We're going to talk about the impact on caregivers and what is being done about that.

More than 6 million by some counts, more than 7 million Americans living with dementia have some form.

And we're going to talk about what the experts say.

We'll get your feedback too next hour.

Support for your public radio station comes from our members and from Mary Carolla Center, proud supporter of connections with Evan Dawson, believing an informed and engaged community is a connected one.

Mary Carey, ola.org.

This is connections.

I'm Evan Dawson, glad to have you with us.

I said at the top of the hour that one of the the two big hot button issues in Albany for for years has been this question of made mid medical aid in dying.

And the reason that that is pertinent to today's conversation, in part, is because of the way you look at made laws in other places, Canada being the most prominent.

So about a decade ago, Canada passes a medical aid in dying law.

It was very narrow when it was proposed and passed, and it has since broadened considerably.

It has been amended and so that now you do not have to have a terminal diagnosis to get approval for medical aid in dying in the system in Canada.

So this week, New York Times Magazine ran a long piece covering Canadian laws.

I want to quote from their piece about how the law was originally designed and how it has changed.

Quote.

In 2023, one out of 20 Canadians who died received a physician assisted death, making Canada the number one provider of medical assistance in dying in the world.

When measured in total figures.

In one province, Quebec, there were more maid deaths per capita than anywhere else.

Canadians, by and large have been supportive of this trend.

A 2022 poll showed that 86% of Canadians support medical aid in dying led legalization.

But in some corners, medical aid and dying has been the subject of growing unease.

While Made in Canada was initially restricted to patients with terminal conditions, people whose natural deaths were reasonably foreseeable, the law was controversially amended in 2021 to include people who were suffering but who weren't actually dying, patients who might have many years or even decades of life ahead of them.

This new category includes people with chronic pain and physical disabilities, end quote.

And so what Canada has is an ongoing debate about whether the law is appropriately constructed now, or if it can be abused, if people can be counseled to aggressively to literally.

And lives of caregivers can be counseled in this way.

Chris Hildebrandt How do you see this particular issue, maybe from the Canadian lens?

First, we'll talk a little bit about what New York has is doing.

it's a dangerous issue.

I think that that as you highlighted there, that, you know, there's a place where I think most of us, most of us can feel for the issue that, you know, we can imagine or we've seen a loved one at a place where, you know, advanced forms of cancer.

And they really are in their last weeks or months of life and they're in horrible pain.

And most of us don't want to see that.

We don't want to experience that ourselves.

So, like, there's, a part where we can feel that piece.

but then it it has opened, you know, literally doors to, allowing or, you know, facilitating people that, that are not in that place, to, to have this path to assisted suicide, to aid in dying.

you know, so it's a very dangerous, you know, piece of legislation, dangerous precedent.

Here's a little bit more about the controversy.

The New York Times Magazine covered, quote, some clinicians who are involved with made objected to the legal expansions.

They argue that it isn't really assistance in dying if the patient isn't dying.

To supporters, the passage of the expanded bill, not the original bill, the expanded bill was an act of profound empathy granting relief to patients who might otherwise suffer for years.

But critics argue that poor and marginalized patients are being driven to request medical aid in dying when they are not dying.

Critics argue that Canadians are being driven to request it because of socioeconomic suffering, and even some made defenders acknowledge that financial factors can play a role in a made application or determination.

So, I understand I think all of the the different sides of it as you do.

Chris, when you say dangerous, what I hear, correct me if I'm wrong, is that the notion of medical aid and dying has a danger in that you can keep it narrow at the start and it may expand.

And that's where we are in Canada versus the New York proposal that passed the assembly, not the Senate, at this point is very narrow.

It requires two different physicians to verify that a patient does have an imminently terminal diagnosis, that this is not just someone suffering or someone who has a disability or someone whose care is expensive.

so do you see a distinction?

Is the New York law potentially, more favorable in your view, or do you view that slippery slope?

I'm not 100% familiar with the New York law.

but I would be concerned that it's still a slippery slope that, that there's, the original legislative intent, and then there's courts that reinterpret things or the next bill that gets passed or, you know, a couple of doctors who I mean, we all hear the terms about doctor shopping for other things that, you know, you ask enough doctors to support you on whatever medication you need.

And this could be an instance of that as well.

so I think the New York bill is probably still also dangerous.

you know, and maybe not yet at the point of what we're talking about in Canada, but opens the door to that.

Heather Burrows, what do you see here?

I think that if we had more resources and funding and accommodations for people, they might not get to that point where they want to do that.

and I'm not talking about people who are right on death's door.

Right.

I'm talking about the person who doesn't have a ramp where they need it to be.

And it makes every day really difficult.

Or the Hoyer that they need, they have to wait another two years before Medicaid will pay for it.

And that is the strain of their daily life that makes them so depressed that this feels like the option that they should take.

I just want to make sure we balance things that there's not that financial component, you know, that people don't cost anything, right?

So it's it's a horrible thing to say, but at the same time it's we can't help but feel it when we're talking about these kind of things.

Yeah.

And so let me read an email from Dennis in Penfield who is listening.

who says, Evan, I'm very glad to see that the made law has passed the assembly in New York.

There's still more to do with it, though.

I have a friend in Canada whose husband had Lewy body dementia and lost the ability to read and was losing his cognitive ability.

He did not want to finish his life that way and was able to qualify for made his family was able to be with him and give him the dignity he wished for, rather than watch him waste away mentally and physically.

This is not for everyone and it's probably rare that someone would choose this, but it should be an option.

And he goes on to say, my wife had Parkinson's with dementia and I don't believe she would have chosen that.

I do hope it is available as a choice in the future.

So, you know, Heather, when you say, when you talk about the money in the system, there's there's a lot of money in the system.

I understand Dennis saying if we have a system that is just purely the choices of individuals.

That would be one thing.

the concern I'm hearing in the panel today is that is, idealistic.

and it unfortunately runs up against a system that sometimes counsels people in the direction of what is good for the bottom line, as opposed to an individual family, etc.

is that description.

My father also had Lewy body.

He was an amazing man, and watching him go through that process in the strain that it placed on everybody was hard.

I don't know if he were to chose that option if it was available to him, but I do know that the end of his life, he wasn't him.

He couldn't do the things that he always had done.

He wasn't who he was, right.

And he was kind of trapped in a body that was dying and not cooperating.

And I feel like that's radically different than with somebody with cerebral palsy, where they can say he has a really high aspiration risk.

He could die at any minute.

That's different.

You know, if we gave him the right chair and the right supports, maybe he wouldn't aspirate.

If we had the right home care support, his would be at the proper consistency or size.

So I think there's definitely different groups.

And I think that no matter how narrowly we write about how it's implemented and how it morphs over time, that's the part that gets scary, you know, and Chris, in reading some of the criticism in Canada from the disability community, again, I want to say the disability community is like getting to me.

It's not a monolith, but the the criticism that has come from the disability community has generally been along the lines of what Denis and others have said, which is you can be idealistic.

And if we have a society that doesn't view people with disabilities as less than or as sometimes, as you say, just more expensive, an annoyance in a medical system, then we can maybe more realistically, talk about implementing this in a way that doesn't perhaps prey on people.

But the criticism I'm reading from Canada says with a lot of people with disabilities don't feel like the system is there yet.

Yeah, I think we're a long way from having a system that provides people a good, high quality of life, you know?

And I think that at it, when you're not focused explicitly on people who are going to die in the next one month or two months, you know, then you start entangling it into a quality of life issue that, it's pain or it's, you know, that, I never pictured myself as being incontinent or, you know, a lot of these other issues that are about quality of life.

And, you know, in my work with people that, you know, may have recent spinal cord injuries or have a spinal cord injury for a long period of time, but they don't have the supports and services in place.

You know, that's where I hear people who are very severely depressed and who may talk about things like, I just want to end, you know, and like, they may have enough of, you know, medical diagnosis that they could construct that argument of, like, well, I do have pain.

You know, spinal cord injury is shortening my life.

You know, it's not imminently ending, but it's shortening my life.

And maybe you can find the right doctor and qualify for, you know, aid and dying instead of aid and living, like, literally our home care aides and decent housing and transportation and employment.

That's an interesting juxtaposition.

If you're going to have aid and dying, do you have aid in living?

Do you have a sufficient aid in living?

as Heather said, anything you want to add on this, Brian?

No, I think, I mean, at the, I think you all you what?

You what I've heard and what you guys were saying, I'm pretty much.

You know, I don't think I could add too much.

Okay.

And I think we've got Erica and Grace on the phone.

If we still do, let's go ahead and take that phone call now.

Hey, there.

Erica.

Yeah?

Go ahead.

Yes, ma'am.

Yes.

Go ahead.

Erica.

I'm sorry.

I'm the clumsy one here, so we got a little bit of a delay.

Go ahead.

Erica.

Oh.

No problem.

Thank you very much for having me.

can you hear me?

Yeah.

Go ahead.

Perfect.

so I have actually banning protesting, medical aid and being assisted suicide, whatever.

You know, the bill is called this year, for the last ten years.

I completely agree with the panelist.

I don't think it needs to be legislation.

you know, there is definitely a slippery slope when it comes to talking about this conversation because in my eyes, there are no true safeguards that are going to tell me, okay, so if I go into the doctor who already giving me the attitude of, oh, well, you have a disability, your life must be really, really hard, here is this option rather than that's more expensive treatment that we could give you.

I just, I, I'm finding a really hard time with that and something that, when, when I first came in, I was talking about PD pass, and I 100% agree there is a correlation between services and support and this medical aid and dying because I, I completely agree with both Heather and Chris that if people just had access to the supports and services that they needed to be able to live the life that they choose to live, I think there would be less people interested in this measure.

And, I think for me it's hard, particularly, and in my life because, I functionally don't have any access to the community at all.

I can't drive my car anymore.

we have terrible paratransit in grief.

Yeah, and Gabe and I, And so people are being trapped in their homes.

And where I live in North Gray's, there are no grocery stores.

So my husband and I are both physically disabled, trapped at home.

The Twitter, have a very hard time getting to any kind of hospital or any kind of medical appointment, because medical transport is also not reliable.

And naturally, that leads to severely depressing, situations and affecting our mental health.

So I can't even imagine for anybody who actually lives out in the country, because I live in North Greece, I can't call that country, and even with all the advocacy that I have done over the last few years, there are no legislators who have been able to appropriately help us.

Well, Erica, if you don't mind, I'm going to jump in here just because I want to make sure our guests have some time to respond.

You've given us a lot there.

and there's a lot of really important points there.

So thank you for the phone call.

First of all, the last point on, you know, sort of not being in the country, but feeling like you're in the country.

There is a rural health crisis in this country.

We could see rural hospitals closing.

We could see all kinds of changes, based on what happened at the federal level, to say nothing at the state level.

So that is an ongoing issue for people with disabilities across this country.

and in a lot of rural places.

That's a really good point.

Second of all, I, I'm going to give the guest some time to respond to your your larger points there about the way you and your husband are experiencing life right now and what you don't have.

But that's the reason we brought up medical aid in dying.

It's not just about one issue, it's about all the different ways that it relates to our is there medical aid in living other services?

It's our transportation.

Do you have what you need?

And Erica is telling us that she does not that she and her husband do not.

Eric, I don't have time to read all of the responses we got from Assembly members.

There's a range.

but just for example, Josh Jensen, a Republican from Greece, oppose medical aid in dying.

Jen Lunsford, a Democrat in the state assembly, supported it.

They both give us really what I would characterize as thoughtful, careful responses, for two different viewpoints on this, which I think is healthy.

They're thinking about it, but I do I think in many ways, Chris Hildebrandt will tell you, first of all, keep advocating, make sure, because in this way, Chris, do you think the disability community is being heard on this particular issue?

Before we get to our other point, is the community being hurt?

I think our concerns are an afterthought, that they're an afterthought.

Yeah.

I think that, and that's often the case with disability where we don't line up and like, typical left and right, you know, that our issues kind of jump back and forth, that some of our issues are very Democrat friendly and some are much more Republican friendly.

so I think that that our concern tends to come after, maybe, liberal progressive.

Well, people should have this.

Right.

And we come after a more religious right of like, no, suicide is wrong.

You know, somewhere after that as sort of the disability community concern about like, we want a quality of life before we worry about a quality of death.

Right.

Okay.

What would you say to Erica?

Heather, I think the legislators missed the mark in a way.

When I worked on health care, I was in a 500 bed facility, and we had people hooked up to machines for years and years, sometimes decades.

They weren't there, right?

And we couldn't remove any of those interventions because they were in the system.

They had a developmental disability, and there was ethics boards and all these meetings, and we weren't allowed to do what we would do for any other person out of compassion.

Our hands are tied.

And I think that that like in my mind when I hear about these bills, I think that makes sense because we're spending money and resources on someone who's just in this limbo state.

When you add in the factor that the person has to be cognitively aware and able to make these decisions, we leave out the group that I think it applies to the most.

and we get into all the issues with quality of life and lack of resources.

And when you're institutionalized, whether that means you're in a big facility in a group home or you're stuck at your house and you can't leave and be part of society, that's something we can fix.

Last couple of minutes, Brian, Erica mentioned transportation.

How have you found transportation access to be for you?

Well, I'm fortunate enough to have my own, handicapped accessible van.

so I it's very easy for me.

I can get out and go wherever I want, so long as I have someone there to drive me.

but, I do.

We do know me.

Me and Chris have dealt with a lot of people that have to deal with, you know, handicapped, transit.

whether it be, you know, the RTA shuttle busses or, some of the other, you know, private companies that, show people, and how, you know, it's it's you got to be you got to be very good at, scheduling, you know, and, you know, monitoring your time because you're on now, you're on their schedule basically.

It's like, you know, when, when they come pick you up and then when and then, you know, when they drop you off and then when they have to come back and pick you up, you have to be ready or else they're going to leave you there, and then you're and then, you know, you're up the creek and then and you're on the phone trying to find, you know, someone else to come and get you.

Yeah.

but for the most part, for me, it's been it's been fairly easy.

I want to say as well, that Assemblymember Lunsford tells us that, her offices in touch with the disability community regularly, crafting legislation.

This one included, and indicated, that over the last ten years, they've really worked hard to make sure that those voices are included and will be included, because I think a big question is, if this bill becomes law, no guarantee it will.

It's passed.

The Assembly has not passed the Senate.

will it expand like Canada's?

Will it be narrowed and focused?

And will there also be supports for living and not just dying?

I think those are fair and important questions.

and related to all kinds of different policy and this is where I would like the audience to thank our wonderful panel this hour.

Thank you to the group here, Heather Burrows, Chris Hildebrandt, Brian Weber, thank you all for your perspectives, and thank you for being here.

That's the pleasure.

We've got more connections with this special live audience with us today.

More coming up in a moment.

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