WXXI’s live forum is presented as a part of move to include a public media initiative made possible with support from the Golisano Foundation.

Imagine the possibilities from the Greater Rochester Health Foundation working to pursue and invest in solutions that build a healthier region where all people can thrive.

And by the Corporation for Public Broadcasting, a private corporation funded by the American people.

Good evening.

I'm Evan Dawson.

Thanks for joining us for WXXI Live Forum The Impact of COVID 19 on People with Disabilities.

Tonight, we'll discuss how disparities in health care in society faced by people with disabilities have been exacerbated by this pandemic.

And we'll talk about how that has affected their lives and those of their families.

This month marks the 30th anniversary of the Americans with Disabilities Act, which prohibits discrimination based on disability.

To honor that, WXXI and five additional stations across the country are airing programing that promotes inclusion in communities.

It's part of the move to include project that's a partnership between WXXI and the Golisano Foundation.

Our guests for tonight's forum are joining us in our studio and via Skype.

We want to emphasize they are physically distance from me, our crew and one another.

And we'd like to ensure everyone in the audience that our team here is wearing masks, taking every precaution.

And we make sure that our panelists are safe in this building.

Let's get to it.

I'd like to welcome our guests.

And as we do that, we're asking each of them to describe themselves for members of the audience who are blind or visually impaired.

And I'll start.

I'm wearing a suit and tie.

I'm a white man in my early forties.

Stephanie Woodward is a disability rights advocate with disability Details.

Stephanie.

Feel free to describe yourself.

Hi, I'm Stephanie Woodward.

I am a white woman with curly blond red hair.

I'm wearing a black shirt with an orange blazer.

All right.

Jalen Sparks is a regional leader of the Finger Lakes chapter of the New York Alliance for Developmental Disabilities, a human rights advocate and the loving mother of an adult son with autism who lives in a group home.

Jerry, feel free to describe yourself.

Hi.

I'm a middle aged white woman, petite, build half medium length brown hair, and I'm wearing a wine red dress.

All right.

James Bransford is president and CEO of Lifetime Assistance Inc. And, Jamie, go ahead and describe yourself.

Yes, thank you.

I'm in my early sixties medium, I guess, stature and height or average stature and height.

I chose to wear a suit and tie tonight for this special event where I wear glasses and that's that's how I would describe myself.

All right.

And joining us via Skype is Janie Flores, a disability advocate.

JD, go ahead and describe yourself.

Hi, I'm JD Florez.

I'm a Puerto Rican Rochester native.

I have long black hair.

I wear black glasses.

And today I'm wearing a bright yellow shirt with him, some historical black figures listed on it.

All right.

And later in the broadcast, we're also going to hear from Oleg Parris, a deaf actor and artist who is an authority noted alumnus.

Just a reminder, you can submit questions and comments for panelists this hour by emailing form at WXXI dot org or by tagging WXXI News on Facebook and Twitter.

First, I'll turn to each of our guests, and I'd like to start with Stephanie Woodford now before this program.

Stephanie, you told us that the pandemic has brought kind of a sense of we told you so in a sense.

And the producers and I, you know, we kind of agreed that the point you made was was moving, maybe difficult to hear, but important.

Can you elaborate on that for the audience?

Absolutely.

So the disability community has been fighting against the institutional bias for decades, and the institutional bias being that it is easier for a person to end up in a nursing facility than it is for them to get services in their own home, in their own community, despite the fact that it's cheaper.

It's where people want to be and it's where they're safest.

So people want to live in their own homes.

They don't want to be in nursing facilities.

And the disability rights community has been fighting for this.

They have been demonstrating.

They have been passing laws.

They have been fighting in the Supreme Court and even won the Olmstead decision in 1999 that says the people have the right to live in the most or the least restrictive setting.

So that means they have the right to live in the community.

And yet we are still seeing people being forced into nursing facilities and we are seeing disabled people go and fight in protest for the right to live in the community.

And when people are protesting for this right and being arrested because they're protesting for the right to live in the community, a right that non-disabled people never have to fight for, because it's a right that you don't think about.

You take it for granted.

And yet disabled and elderly people have to fight for this.

When we're arrested, we can't.

I'd rather go to jail than die in a nursing home.

And when we chant that it's not a performative act, it's that we genuinely know that we're going to die in nursing homes.

And now the nation is seeing that.

The New York Times is great at keeping track of this.

And we are seeing now that over 40% of the deaths in our nation are coming from people in nursing facilities.

And that is absolutely outrageous, especially since only 8% of the corona virus cases are coming from nursing facilities, and yet 40% of the deaths are coming from nursing facilities.

It only shows that people belong in their own homes, in their own communities.

And we've been trying to fight for this for a long time, and it is time to pass policy to make it possible.

Before I get to a graphic that I think will illustrate some of this, I have one other question I want to bring up regarding work.

Now, we know that the unemployment rate for people with disabilities is significantly higher than the general population.

And in this pandemic, you've seen employers try to become creative and say, okay, work from home, let's figure this out.

Do you feel like that creativity and flexibility should have been there all along, or maybe at least with a little bit more consistency?

See, before a pandemic, that's been another huge I told you so moment for the disability community.

So in the Americans with Disabilities Act, we have a reasonable accommodations which is listed under the ADA as something that you should be offering to people with disabilities in order to allow them to do the job.

And it's so hard for employees of disabilities to get reasonable accommodations with employers because employers think it's too hard.

But with this pandemic, we've seen employers accommodate everybody in order to allow people to continue to work from home, in order to have access to different technology to keep the economy going.

And this is something that could have been offered to employees with disabilities before the pandemic.

And it was said that it was too hard and now it's second nature to everybody.

And so it is a complete I told you so moment in that we've told you this was possible all along, but you didn't make it happen until non-disabled people needed it.

And I want to take a look at some information now compiled by NPR.

We'll put a graphic on the screen and I'll read from it.

Now, according to NPR's analysis in New York State, people with developmental disabilities are dying at a rate of 2.5 times the rate of others who contract this virus.

And NPR reported on a survey done in Wisconsin that appears to be emblematic of the problem across the country.

500 people with disabilities who work with caregivers were asked if they have had problems during the pandemic with access to caregivers.

Every single respondent said yes.

Some respondents reported they're now skipping meals, sleeping in their wheelchairs, not attempting to get to the restroom due to the lack of caregiving.

Stephanie, the survey these statistics are dire.

What are you observing?

We're observing a lot of issues with acces a problem because we see that our system in our health care offers higher rates to people who are working in nursing facilities than community based caregivers.

And that's really problematic because if you're offering the same care, you should be offered the same wages.

And when you can't get the same wages to help someone live in the community, to live their best life, but you can get higher wages to help someone in a facility where people are dying at higher rates.

That really shows that we have policies that aren't good for promoting the best lives and valuing elderly and disabled people in our nation.

And we really need to value the lives of disabled and elderly people and have policy behind that.

Now, let me turn to James Brand support the president and CEO of Lifetime Assistance.

Jamie, when you see some of those numbers and frankly, some of those grim reports from people who have really been struggling during this pandemic, what's top of mind for you about why this is happening and what's being done?

Well, those are real numbers and it's shocking.

It's wrong and Stephanie alluded to, we've been facing discrimination against people with disabilities for four decades.

If not centuries.

So they they really they're shameful.

Lifetime assistance.

One of the things I'd like to do is say a quick thank you to the frontline people at Lifetime Assistance who are providing extraordinary care and services every day.

They're the heroes, the frontline workers, the nurses, the clinicians, the leadership.

They have done an extraordinary job keeping people safe and healthy and well through through a time that we have never imagined we would we would experience.

So, yes, those those are are shocking numbers.

I would say that they are likely much more representative of downstate area in New York City and some of the suburbs, Long Island as well.

We upstate have really handled the susceptibility of of people with disabilities to to the COVID positive, the viral transfer, if you will.

Much, much better then than than the large population centers.

And at lifetime assistance especially, NPR reports that caregivers Jamie in some states average around $12 an hour.

Some are university students who, of course, their universities closed in the spring.

Those are just two of the reasons that some caregivers have not been available during the pandemic.

Jamie, how are you addressing that issue at lifetime assistance?

Well, that's that's a that's a that's a correct number.

And we have fought hard and advocated hard as a field with all of our peers, with families, with parents, with people in our services to provide a living wage.

And what that means is you really need we really need basically New York State and the federal government contract with agencies like ours to provide this care.

We've not received an increase to our rates in ten years.

So we are operating at a at a revenue level that's ten years old.

What we've done for this pandemic with with an extraordinarily committed and caring board of directors and our leadership team, we developed what we call emergency incentive pay.

Some people call it hazard pay, if you will, to assure that we have the absolute best talent on the front lines and there's an increase in wages.

There's no federal or state support for that.

We dipped into our reserves to very, very big number, but we believe it's essential to reward the caregivers and to recognize their work.

And that will that will carry through through September 30th.

We turn to Jerry Lynn Sparks.

And, Jerry, you and your family have certainly been through a lot in this pandemic.

Let's start with your family's story.

Go ahead.

At first, when the pandemic hit, we of course, understood the need for social distancing and the mask wearing.

And I was a bit surprised when I found out that I couldn't visit my son because we were practicing the same types of safety measures as group home staff.

I was working from home 100%.

My children were not in school and as the months wore on, I noticed that the governor had never placed group homes in any phase of reopening.

And when bars and restaurants and zoos reopened, that's when I really became very livid.

And I went to social media and I said, I want to see my son.

And I started a campaign to get him free.

My whole complaint has been the lack of inclusion.

The entire theme of my complaint is the lack of inclusion for group homes in any phase of reopening yet.

You know, the spray parks were open, jail inmates were set free.

The lack of inclusion for families to see their children and to have decision making.

We are essential caregivers and we were not treated that way.

We were treated as visitors in our own children's lives.

The lack of inclusion for PPE, for ventilators, not having any prioritization, not having clear leadership from Opw and the governor, and the lack of communication.

So I, along with 5000 other parents, started making a lot of pleas.

And to the credit of these agencies, the governor's office and Congressman Mireles office Opw.

They're finally starting to get the message.

There's still a lot of discrepancies between what each agency does.

Just based on the lack of clear guidance from OPD, OPD And so some families such as mine were able to reunite with their families on July 15th.

Others still haven't.

I think a guidance was released by lifetime assistance two days ago and they're going to start revisiting their families tomorrow.

So there's a lot of discrepancies even now.

You sound an adult now.

What's this been like for him?

He's been livid.

He's been having a hard time controlling some of his behaviors.

But I think he's done very well considering his communication impaired.

He's been depressed, he's been sad, he's been lonely.

He's had some increase in behaviors.

He wrote a letter to the governor himself.

So he's starting to self advocate.

He wants his day program back through the arc.

I did get a call today about that.

But he's basically his outings have been before the reopening were to sit inside the group home, possibly go in the yard and go on a van ride and occasionally they would go on the hikes.

But I wasn't allowed to join them.

Do you do you get the sense that the hesitation, or at least maybe in the early months of this pandemic, the concern about what should be permitted and what should not?

Was reasonable.

Do you think people were listening?

I don't think that it's fair to lump all people who are in group homes into one category.

61% are under age 64.

So they're not in a high risk category.

The majority of them are not medically fragile.

Yet they lost their individuality and their humanity by being treated as all the same.

It would be the same thing is if Governor Cuomo treated all of New Yorkers as being in a nursing home.

So they lost their humanity.

And that was an insult and it was a lack of prioritization of the role of what the group homes are supposed to be and what the 30th anniversary of the ADA, what the purpose is, which is to give meaningful lives.

And that includes treating people as as human beings and individuals.

I we have a statement from Opw, and I'm going to go off script a little bit because we're going to hold that for later.

But you bring them up, Jerry.

So if we could, I'd like to read it now and then we'll get your your thoughts.

We asked Opw d d to join us for this program, The Office for People with Developmental Disabilities.

They said that no one was available.

They did send us the following statement.

I'll read it now.

Quote WXXI is forum Exploring the effects of the pandemic on people with disabilities is timely as we celebrate the 30th anniversary of the Americans with Disabilities Act.

Throughout this week, Opw takes our role as a service provider and advocate for people with developmental disabilities very seriously.

And we have worked closely with self-advocacy groups and parent organizations throughout the COVID 19 public health emergency to ensure the safety of the people we support while also continuing to deliver needed supports.

While we took swift action at the onset of the virus to limit visitation in congregate settings, established infection control procedures and quarantine protocols, and temporarily paused in-person day services to ensure the safety of the people we support.

We are pleased to have recently been able to relax limitations on visitation, home visits and community outings and to restore in-person day services.

Opw DD Opw continues to remain vigilant in the face of a potential resurgence, and we want to assure families that Opw TDs number one priority is always ensuring the health and safety of all the people we support.

End quote.

Jerilyn Sparks What do you make of that?

So it took a lot of parents picketing and protesting and writing letters and making phone calls and emails to get this to happen.

There was four and a half months that I did not get to see.

My son and 38,000 individuals were locked inside group homes for four and a half months as more than a third of the year They had four and a half months to get their plan in order and get it clearly communicated to the group homes.

And they did not do that until we put the pressure on them.

I appreciate that they do care about the safety, but they needed to have a plan in place to be proactive instead of reactive.

There should be some sort of crisis preparedness plan.

And.

Clearly, there was not here and there was not a priority on the frontline workers getting the PPE that they needed, the testing that they needed, and to be considered frontline workers with the type of pay that would be putting them in a different realm.

So I don't think that Opw did a good job at this one job, which was to look after the safety and well-being of those they've been entrusted to care.

I do not think that they would get an A-plus on their scorecard.

James Bransford Advocates like Jerilyn Sparks have called this a human rights violation.

Do you agree with some of those characterizations and the criticism?

Well, my hat's off to the advocates, the families, the parents, the people who receive services because they have moved the needle at the very highest levels with the governor's office.

This is a has been a it's been a tsunami that is washed in in mid-March.

And one day we at Lifetime, where we're directed to close all of our day services and our job services for about 600 people.

And that meant those facilities had been closed.

And it also meant that we had about 400 of those people now requiring 24 hour, seven day a week, supports and services and care in in a high risk congregate setting.

So the protocols have been massive from CDC, from New York State Department of Health, from the Office of People with Developmental Disabilities, from the attorney general's office, from Monroe County, has been extremely helpful.

Dr. Mendoza, with helping us figure all of this out.

But we are licensed by New York State and we're required to follow those rules.

The fact of the matter is, downstate there are articles in all kinds of publications.

Downstate Group Homes had a horrible, horrible experience with the loss of lives, with its spread in the group homes with with just tremendous, horrific outcomes.

And the protocols that we have about 50 nurses that lifetime and the extreme requirements they change daily.

And we were we have been around the clock keeping up with the sanitation requirements, with the social distancing requirements, with the mask requirements, with training frontline people to all of a sudden be health care workers when somebody became positive.

We've had very, very good success at Lifetime.

We had very small number of people who were COVID positive, a handful who were in the hospital and all of whom are back home and healthy.

Now.

What we see a little bit of controversy now about when people could leave a hospital and come back into a nursing home.

In our case, people could be COVID positive, but we established two isolation centers within their group homes.

So nobody else in that group home other than people who were COVID positive would live there.

And we had two of those homes.

They were they were short lived.

And the protocols, the requirements have been have worked at Lifetime, and they've worked extremely well at keeping people safe and healthy, of course.

It's devastate for the people in our homes not to have a normal life like, you know, similar to any one of us, but even more so because, you know, we have the freedom to move about.

It's very, very difficult for many people.

We have we have some of Monroe County's most severely disabled people in our services, many who are very, very frail but but confused by this and this is very personal for me.

I, I have not seen my grandchildren since early March, including my 21 year old granddaughter, Lydia.

She has a severe developmental disability.

And I have I have not hugged her since early March.

And what we say to each other is we are staying apart today so we can be together later.

So I would not I would not characterize the successes, especially upstate, as a violation of human rights.

It I'm not prepared to go there.

And I do hear you honoring the work of advocates like Jerilyn Sparks.

Let me turn back to Stephanie Woodward.

You are very familiar with the potential impact of advocacy.

You've done it in Washington, among other places.

We have a photo of you with your hands zip tied to your wheelchair behind your back.

Capitol Police did that in 2017 when you were protesting $800 billion in cuts to Medicaid outside Senator Mitch McConnell's office.

Sometimes you've gotten the results that you've you've sought with demonstrating.

Other times you have not.

What do you want policymakers to understand tonight and what do you want them to do next, Stephanie?

I'm policy makers understand that it's no secret that people with disabilities are more likely to experience sex crimes and domestic violence than people without disabilities.

And oftentimes that does happen in congregate settings and in institutional settings.

So when you lock those doors to those settings, that means that reports of those crimes can't get out.

It's hard enough for people in congregate settings to report those crimes when they happen because they fear for their own safety if they report them.

And now, when you've locked those doors and people can't get in to check on their loved ones, that means even more of those crimes could be happening.

That's a safety issue.

This is a human rights issue.

When you are trapped in a facility and you can't get out and nobody else can come in, that is a human rights issue.

We are celebrating the 30th anniversary of the ADA.

The Americans with Disabilities Act was put in place to honor the civil rights of people with disabilities.

People with disabilities are in nursing homes.

They're in group homes.

We're not here to distinguish what congregate setting and what institutional setting is worse or better than the other.

When you are in one, you are in any and you have the rights to be a still a human being and be recognized as such and be respected.

So we need to have policies in place that keep people safe while also keeping people in community.

So we need to have policies that allow people to be in their own homes if that's where they want to be.

And if people do want to be in these institutional settings, we need to have policies in place that make sure that they have access to the outside community and have access to safe reporting measures and safely get in and out when they want to, because keeping people trapped doesn't keep them safe.

Well, according to the CDC, one in four U.S. adults or 61 million Americans have a disability that impacts major life activities.

And recently, Time magazine took a look at the impact of the coronavirus on people with disabilities.

The first person they featured in their piece was a Rochester and named J.D.

Florez, who is joining us via Skype.

J.D., I want to read the quote that you gave to Time magazine, which is frankly difficult to process for a lot of people.

But it's important to understand just how dire the situation is.

You told Time magazine, quote, If I get this, I'm going to die, end quote.

As hard as that is to hear, can you explain why you feel that way?

So right at the beginning of the pain, I was just getting over pneumonia and it was, to say the least, like a traumatic experience, because our emergency rooms and a lot of physicians just aren't really I don't want to say they're not skilled, but they don't necessarily have the tact to treat people with disabilities.

So it was really hard to be in an emergency room to get the treatment for pneumonia and just to really feel like you're out, you're within.

And it was just pneumonia.

So then I couldn't imagine what the next step of that would be like.

And so I being maybe I was maybe three weeks out of recovery from my pneumonia to then this huge pandemic.

And then I became super fearful of everywhere I went.

I started to self-quarantine before quarantine even happened because I knew that if I was barely making it at the stage of pneumonia, I would have never survived what COVID could have done to my body.

I already.

So I just turned 30, and the week before I turned 30, all I kept thinking about was all the different ways in which I could die.

Which is really it?

There are so many loop, like there's so many holes within our health care system that I'm not ever really getting the best treatment possible, even with a primary care physician like I'm not.

There are so many things that I'm missing, so many windows that I'm not really receiving care because our health care system really isn't built to treat people with disabilities that I could possibly be dying right now sitting in front of you.

And neither of us would know it.

So that's what, to me, living in fear of COVID is.

If you don't, you're already you're getting inadequate, inadequate care, and now we're adding on to it.

So how can I ever really guarantee that I'll be my healthiest self?

Well, and that's another portion of the concern that Time magazine explored in their piece.

Many people with disabilities are deeply concerned about how they would be treated or how their case would be handled in the hospital if they have to be hospitalized after contracting this virus.

J.D., do you feel that you could or would be treated appropriately if you're hospitalized with COVID 19, what would your expectations be?

Death.

I would most likely die there.

So even just to be honest.

So when I had pneumonia, I was in the emergency room for two days.

The emergency room was not really staffed.

So there was I had someone with me and at the time the guidelines were stating that you could only go into an emergency room by yourself.

So if I hadn't had a person with me during my bout with pneumonia, I wouldn't have been able to use the restroom.

I wouldn't have been able to get in and out of bed.

I wouldn't have been able to transition into my wheelchair.

But there's a laundry list of things that I wouldn't have been able to do and no one, none of the staff members really cared to even check in.

So in my mind, what I envision if I was to have contracted COVID and be living in a hospital setting, it would be that I would die because people would forget that I existed on this floor as a patient and that I wouldn't receive the treatment that I needed.

I want to ask Stephanie Woodward that same question.

We've talked about how disparities faced by people with disabilities affect daily lives.

This is now literally potentially life and death.

And Stephanie, how do you feel you'd be treated?

Would it be appropriate treatment and an appropriate handling of your case if you end up in the hospital with this disease?

I'm completely with Judy.

I fear that I would die.

We're already seeing this.

You can look up the case of Michael Hixon in Texas.

He's a quadriplegic man.

And the doctors are on tape saying that they refused to treat him for COVID because they don't feel that he has a quality of life.

They don't feel he has a quality of life because he is a quadriplegic man.

So they refuse to treat him for his COVID.

They refuse to save his life or even attempt to save his life simply because he used a wheelchair.

I use a wheelchair.

Judy is a wheelchair.

So the idea that there are already medical professionals out there deciding not to treat people for COVID based simply on the fact that we are people with disabilities and you don't believe that we have a quality of life is enough to let us die.

Scares me to death and will result in our deaths.

We're seeing medical rationing all over the nation.

We are seeing hospitals saying that disabled people can't bring in another person.

And well, that may be a legitimate case for non-disabled people, for people with disabilities, when we know that the health care system already discriminates against us.

There are many people with disabilities who do need another person with them.

If you're non-verbal, you may need another person with you to help you advocate for yourself.

If you're a person with a disability who needs someone to help you transfer, you know that the hospital staff is not going to be there to help you transfer.

Then you need another person with you.

So we've had advocates across the United States fighting hospital policies, fighting state policies that say that people with intellectual disabilities wouldn't be treated for COVID.

These are real policies that we're seeing put in place across our nation for prioritization, for treating COVID.

It is scary out there.

And so I have no doubt that if I got COVID, I would die.

We turn back to Judy.

You know, understandably now, given your perspective, are you told Time magazine that your number one goal during this pandemic is to simply not get COVID 19 at all?

But then even following stay at home orders has been more complicated for people with disabilities now.

This is a piece that came out a couple of months ago.

I don't know if if that scenarios change at all.

So can you first explain why even following those staying staying at home orders were more challenging and if that has evolved at all, Judy.

Well, I'm going to challenging because anyone who uses any services that requires other people to come into your house like that creates, you know, the thought that maybe this person, you know, had like was in and around COVID, our baby, you know, that our loved ones might have been and maybe they bring it into your home.

So then you start really limiting the people that come into your home.

But at the same time, you need those people.

So how do you make those big decisions and how do you put extra pressures on those people who who fall for you as natural support?

Like, what do you really do?

How do you really decide that?

I have a staff member who directed that worker in her or her significant other.

He works at a retail store.

He you know, he he'd never worked from home.

You know, he's always on the job.

And so how do I know that, you know, she's safe and when she meets me, be like, I'll be safe.

So that's what makes it hard.

And it to make those decisions because you want to continue to live life and use the people that you need.

But at the same time, how do you do that when you know they've had you know, they're going out and about?

I didn't go anywhere.

But but they have you know, they're going out and about.

So how do you decide that?

I think my fear still is as we become more lax and people this starts to feel like the norm.

Then those new practices that we started with using hand sanitizer, always having a mask on, you know, continuously washing your hands like that will go lax on those practices, too, because we'll start to believe that, you know what, this is the new norm and nothing's really going to happen to me.

And then that's when it will happen.

So staying vigilant is a constant for me, and so staying vigilant with them as my staff members.

There's also a constant like and also I live in a home with four of the people who have to go to work, who have to live their actual lives.

So how do I take care of myself and how do they help take care of me?

So it's a lot of big decisions we all have to make collectively so that we can all stay healthy, but really so that I can stay healthy because we know that if I contract COVID, you know, there is a high possibility that I will die and then that will change the make up of my whole entire family and just the realm of life and community.

If you're just joining us, I'm Evan Dawson here at the WXXI Studios.

Our guests are discussing how people with disabilities are impacted by this pandemic.

Again, we emphasize we are all physically distanced from one another in this building.

Our crew is wearing masks and taking every precaution to make sure that all the panelists and people in this building are safe.

And our next guest is joining us via video from Philadelphia.

We recorded that video earlier this week.

Malik Paris is a deaf African-American man who is an actor and artist and an alumnus of our IT entity.

We wanted to know how the pandemic has affected people who are deaf.

Now we're all wearing masks now in society, which can create challenge.

I should say.

Most of us are wearing masks in society.

It can create challenges.

And we asked Malik how the prevalence of masking has impacted people who are deaf.

You'll hear his response first through the voice of an interpreter.

Hello?

Yes.

The deaf community is faced with that challenge.

Communication.

A lot of hearing people, for example, are wearing masks because of the pandemic.

And it's really hard for us to read their lips or what their facial expressions are doing.

So we're missing lot of information trying to assume what's being said.

So that does pose a challenge to us.

Hearing people also most times refuse to communicate with a deaf person or doesn't have the patience to communicate with deaf people.

So that's a challenge.

Another thing that comes up, as well as the clear masks, I know those are really nice there.

They also are safe and with my own eyes.

I've seen this in my own hometown.

I see a lot of deaf people who already have the clear mask, the one that goes over your head.

So here, I don't think that all of them have those clear masks, but some.

So there maybe there's a way to get those and have those widespread.

That would be great.

Before I get to the second question for Malik, some news that I just saw tonight, and I'm going to do my best to share this regarding masking because it plays directly into what Malik is saying about the challenge for people who are deaf, lip reading, seeing expressions, you know, certainly an issue that that frankly people like me need to think more about.

Now, there's a new study, I think it's out of Switzerland, somewhere in Europe.

We read it tonight.

It indicates that the clear plastic shield we're not talking about mask, we're talking about shield.

Sometimes servers in restaurants or other scenarios in settings in society where the clear plastic shields, the shields are not nearly as effective as masks that are secured over the nose and under the chin.

That doesn't mean that clear plastic can't work because there are masks that are secured over the nose and under the chin that have a clear plastic opening and not an opening a clear plastic insert where you can see the lips and more of the face.

And that is something that I'm going to put on order tonight that can be just as effective.

And I'm really appreciative of what Malik had to say about that.

Now we want to know, beyond masking, what are some of the biggest issues impacting people who are deaf.

Here's Malik's answer.

I remember the first time that the pandemic started.

There were a lot of hospitals that they increased in numbers with their patients and most of those were deaf patients that were at our hospitals because of COVID.

And also the numbers of interpreting agencies were were at a at a low because of, you know, a lot of those accommodations were there.

You know, we weren't allowed to have close quarters.

Normally, as a deaf person and an interpreter would.

So that situation was low.

That was a challenge, not having the access.

The other issue was academically, you know, the remote learning that we have, you know, that it's typically accessible for deaf, but that wasn't there.

So most of the services had changed over to Zoom meetings and those conference calls that were online.

And that was a challenge.

And there was also some technical issues that that happened there.

So for individuals who didn't have a laptop or a computer, that was a challenge or and most times to you, if you're deaf, you know, you lose focus.

Because if you're here on a Zoom call and the interpreter and the professor speaking fast and the interpreter is blurry, for example, you know, and students are raising their hands and it's kind of hard to see who's talking following the speaker on the Zoom call.

So that was a big challenge, I've noticed.

And we also asked Malik if he has been personally impacted by disparities or inequality during this pandemic.

Here's what he said about that.

I'd say personally, how this has impacted me is I kind of I don't feel like there's a big level of access for me.

I know that there is racism.

That's happening.

Humanity is seems to be you know, we just kind of have to stick together during this kind of all time low that's happening.

Everyone's staying home and everyone separated again to learn about a new virus that that's taking place.

And then some of the brutality that's happening in the world, the world is burning down.

And so that's, you know, as a deaf person, it's just a kind of the world is in a heightened state right now and there's different things that are happening.

Oppression and police brutality amid COVID.

And a lot of a lot of, you know, people in the nation right now are angry.

And there's just a lot of different things that are we're encountering right now.

Thank you.

Thank you.

Thank you for inviting me to show.

I'm really happy to be here.

And our thanks to Malik Paris joining us via video from Philadelphia earlier this week.

Now we want to bring in a member of the Self Advocacy Association of New York State.

Joshua Derrick is a white man.

He has Asperger syndrome.

And he says some of the greatest challenges he has faced during the pandemic are related to transportation.

Here he is joining us via video from earlier this week.

So I moved here back in year to the city, back so back in December 2019.

And I was doing pretty well things getting to know more about the city and my neighborhood and being able to ride on the city busses out here.

And when this when all the COVID concerns started, then things and things went well for me.

After that, my social activities and my supports, just everything just started being put on hold because there was a lot of uncertainty starting to happen and and restrictions started getting put into place.

And a lot of those restrictions are now still in place.

And it's it's been really difficult for me.

I love to travel.

And that and with this virus, it's made it difficult for me to go any.

I was told that if there's anything else I need to go and do, I have to use whatever form of public transportation I can find because my my step was on my staff was unable to transport me any point without unless it was unless if it's essential.

And they had to get permission by their supervisor first at the supervisors discretion.

I'm still really nervous to ride on the busses because of because of the virus and that I'm being told as long as I have my hands across and and I have a mask on, I should be fine.

But still, though, there's still a lot of uncertainty there.

What's what makes me feel really nervous to even get on a bus.

And our thanks to Joshua Derek for submitting that comment via video.

I want to start by asking James Bransford, the president and CEO of Lifetime Assistance.

You know, Jamie, what Joshua is describing, I think, is really is broadly applied for people with disabilities.

There's so many things that have either been taken away or progress that's been hold or the concern is reversing some of the gains and the progress.

How do we make sure as we go throughout this pandemic that's not ending now?

It's not ending next month or in September or October.

Who knows when it ends?

How do you make sure that we are not essentially moving backwards gains that have been made right one opportunities gained.

How do we do that?

Well, Evan, it's nice to see Joshua.

I've known him since he was a little boy.

His grandparents live next door to me, and he's been at our home on Christmas.

And he's a tremendously talented young man.

How do we move forward from here?

I think the advocates are right on in in stepping up and assuring the care, the independence and the inclusion and the community involvement.

They've had tremendous success with the governor.

We have been out front and being most flexible at lifetime assistance.

We started family visits in early June.

They were outside the weather permitted it.

There were really we worked with New York State to develop the protocols and push the envelope.

And that's and that, you know, we have a history.

Parent involvement is we were started by a group of four families around a kitchen table.

And in Brockport 42 years ago.

And so we understand it's who we are.

I think we fight the good fight.

We as professionals, as advocates, as people with disabilities, as family members, and never let up.

We hope that this is a blip.

We hope that there's a vaccine.

We hope that that we life will return to a semblance of normalcy for everybody.

And we're we're along for the ride.

Not only the ride, but the fight.

And before we bring in the other guests to respond to that, here's another comment with a similar spirit that we want to share with you now.

It comes from a man named Jacob Collier, and he shared with us some of the social and emotional impacts of the pandemic.

He writes, quote, Personally, it has been a difficult journey navigating new societal norms.

I have just recently begun to truly break barriers in my own life and overcome social anxiety.

I needed to push myself incredibly hard to leave the house and get out into the community.

I had only just begun seeing what I was capable of.

When now I am told to stay in the house, if I can, to help protect others.

And I work proudly as a support coach at UP.

And it pains me to know that the kids I want to be around and supporting are safer away from me and the services of my organization provides.

All that is left is to hope for a swift recovery and a brighter future where we can all continue making our dreams become reality.

Jacob Collier sending that note in a self advocate.

Thank you for that, Jacob.

So when you think about Joshua and Jacob's comments, Jerilyn Sparks, you're the parent of a son with autism, and the similar thread here is the real risk and what we might lose during this pandemic if we're not careful.

How do they read to you?

I think what Jacob said is spot on.

I've seen it with my son and the other residents in his group home with the loss of skills, the loss of hope.

My son Jared, whom I love dearly, he actually got a little testy with me in ways that he hadn't in a long time because he's so frustrated.

So the social skills that he gets on a daily basis.

The training he's getting at the ARC, those are now gone.

They're missing.

And the other thing is parents pick up things when they're around their children.

Parents are essential caregivers.

And there have been instances where a child has had a medical condition, and because they didn't have access to their child, it went unseen by people that don't know them as well.

So beyond just the social skills, loss was actually some health safety loss.

This happened from the parents not being able to have that daily access to their children.

So I think going forward, we need to start leading with those who are most vulnerable to make sure that we prioritize them.

And the whole complaint I've said before is this was discrimination through lack of inclusion by not prioritizing the people that most need us to prioritize them.

I don't mean to then turn this in a way as we turn to Stephanie and JD, in a way that sort of just looks for a silver lining or try to put a spin on it.

But I do want to ask I'll start with Stephanie on this.

You know, take what the BBC recently said.

BBC says the coronavirus may make the world more accessible when it comes to spaces employment.

Even how wide the aisles are at the grocery store from a lot of different examples in day to day movement, how we structure society.

Again, this is not meant to put a positive spin.

It's meant to ask.

Building off what you told us at the beginning here, all of the things that you said, we could have told you this would happen.

Is this now a moment where you say, look, maybe it took a pandemic to get here?

Can we make the changes that you feel we needed to make for a long time?

Only if people with disabilities are involved in the leadership decisions, because there's still so many ways that we can get it wrong.

Making aisles wider doesn't fix everything.

If you still are putting things in inaccessible heights, right?

There are still so many ways that as we are working to make things safer, we can still make things inaccessible.

The ways that we can work to make the world a more accessible and inclusive place are only possible when people with disabilities are included in the decision making.

Nothing about us without us is our mantra in the disability community, and that means that we have to be at the table in the discussions, making a real change with you.

So we have to be a part of all of these decisions.

We can help you make these changes because in the very beginning of this pandemic, there were a lot of changes that were being made that were harming us.

When you were telling us all that you could only get COVID testing through a drive thru, what does that do for people in wheelchairs who don't have access to a wheelchair accessible van?

What does that do for blind people who can't drive?

What does that do for so many people with disabilities who don't have access to vehicles?

What you did was you created a discriminatory policy that said only people without disabilities are allowed to get tested for COVID, and so many policies since then have been created that discriminate against people with disabilities.

When you say you can only have drive thru, pick up of groceries, drive through this drive thru, that that excludes so many people with disabilities.

So yes, there is so many possibilities and potential to make the world a better, more inclusive, disability friendly place, but you have to include us in the conversation and you're at it.

You have to compensate us for it.

Don't expect our services for free because you have been working us and expecting our labor for free for a long time and saying that it's charity for us to just have access because we contributed to the conversation.

And that's not how this works.

And can we just take 45 seconds and squeeze in just a little bit about disability details that you can share with the audience?

Yeah, So disability details you could find more about us at disability details dot com.

We provide information about disability rights, access and life and you can learn about the law, You can learn about basic access issues for your business, your church, your organization, or you could just learn tips about life, living as a person with a disability all in one place at disability details dot com.

JD When we think about and I've got about a minute with you here, when we think about the possible gains building off what Stephanie just said there.

Do you see that happening?

Do you find yourself thinking as soon as this pandemic ends, some of these possible gains will go away?

Or do you think we're on that path now?

It's my hope that the gains don't go away.

But like, I don't want to sound like a negative, Nancy, but it's what I've seen in life is that there are often times a lot of things that are made for folks to make lives more accessible, easier and then we watch them become only for us, become a thing only for a specific growth.

So like all the accommodations that were so difficult for me to have prior to the pandemic, but now post pandemic, everyone has them and they're so accessible.

But are you are the employers now going to say that?

Well, you know, these accommodations are okay for the stay at home mom, but you disabled woman, I don't know if you can have those.

So like if there's so much room, like Stephanie said, to kind of get this wrong, depending on who you have at the table to kind of coach you and talk this through that, I don't know.

Like it makes me nervous, but I think it would be a major loss to us if we lose all of the accommodations and all the the foot work that some folks have done for their organizations and businesses after this pandemic is over.

I just think we have to be vigilant and watchful as to who gets access to these accommodations and who gets access to these new and innovative thinking accommodations and opportunities.

Jerry Lynn Sparks, same question.

Do you see an opportunity to take to come out of this crisis in a stronger position?

Because I know you've been through a lot.

Your family's been through a lot.

Do you see an upside there?

I'm going to make it that way.

We have 5000 people and growing with the New York Alliance for Developmental Disabilities.

We're partnering with government officials to create legislation that rights in these protections.

So I'm going to be very, very proactive with this.

We have 5000 family members who are pushing for this.

So I'm already seeing government outreach.

And Congressman Morial, office interested.

Senator Kirsten Gillibrand's office and others.

So I think necessity is the mother of invention.

And there's about 5000 mothers and fathers that are going to help create something positive from this.

And James Brand support.

One minute.

Same question.

How do we make this this crisis something that we not only learn from but truly build the better world that we want to build?

Well, if we don't, shame on us.

I think the parents have shown once again leadership and the advocates.

One of the things I worry about is people who who don't necessarily have a voice.

The more severely disabled people, cognitively, they're not always the ones who are heard in terms of their services and their supports by the you know, from the advocacy community, most are the parents of the people we serve.

We serve people in their own apartments, in their we're building 48 new apartments, affordable apartments to include people with developmental disabilities.

And so we have a full spectrum of services.

But there's so much to be learned.

And I think as we look back, we can work together hand in hand with families.

How did you how did you move the governor in a matter of days?

I got an email on a Friday night at 7:40 p.m. that said you are going to open your day services on July 15th.

You have the option to.

But that happened because of the parents and and thank God for the parents, the advocates.

James thank you.

And I'd like to thank all of their guests, all of our guest for their time, Stephanie Woodward, J.D.

Flores, Geralyn Sparks, James Bransford, Molly Paris, Joshua Derrick.

We'd like to thank you for joining us tonight for WXXI Live Forum.

You can find this broadcast and more information at WXXI News dot org.

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Click on the coronavirus tab at the top of the page.

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I'm Evan Dawson from all of us at WXXI.

Stay safe.

Stay healthy.

Goodnight.

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