>> Kat: It’s just after 9:00 a.m. on the Pacific coast.
It is 1:00 on the east coast.
I think we’re ready to begin.
I just want to go over a few housekeeping items.
First and foremost, hello and welcome to WID’s second global disability and disaster town hall.
I am Kat Zigmont, WID’s Director of Operations.
First, we would like to announce that we are recording this meeting.
It is also currently being streamed on Facebook live on WIDs Facebook page which is facebook.com/WorldInstituteonDisability and I would be happy to put the link in the chat for everybody right now.
Additionally, we have captions, built in to the Zoom meeting.
But if you prefer I’m putting an additional link to captions, and that will give you a full screen of captions.
After we present opening remarks, we’ll start with speakers who submitted request to speak. Then we’ll open it up to all attendees who want to share their experience.
If you would like to speak, you can submit a request to speak using our chat feature.
Simply say “I’d like to speak” to be added to the queue.
We will also be monitoring the Facebook live feed and can answer questions or relay a short message on people’s behalf.
If you are selected to speak, please begin by saying your name, where you are from and name of your organization.If you have one.
We want to try and learn from as many of you as possible so please keep your remarks to 2-3 minutes to outline the issue you are raising, and potential solutions.
Ultimately, we want to learn what disability-led organizations need to continue their operations to meet the needs of people with disabilities in this COVID-19 pandemic, in other disasters you’ve experienced, and disasters sure to come.
We also want to hear about your experiences in seeking and obtaining disaster relief funding for preparing for disasters, your operations during disasters, and your involvement in community recovery.
We want to understand what’s working and what’s not working.
When I select an individual to speak, I would like to remind you to speak loudly for the captioner and interpreters. And slowly.
We would love all speakers to open their video feed when it is their time to speak.
I will change your status from attendee to panelist, there will be a brief interruption of your connection, but don’t worry, it’s a 2-3 second disruption then you’ll be back in the webinar.
Additionally we’ll have three survey poll questions that we’ll be asking you all to answer.
When a poll is launched you’ll receive a notification on your device that will include the question and multiple-choice answers.
This is an accessible process.
I will also be reading the questions and answers for you to choose from, out loud as it is captioned and signed.
Everyone will have time to make a selection and when all have answered we will share the results.
Lastly, we do hope you will share and tweet about this WID Town Hall Listening Session and the very important issues that you all will raise today.
We would love it if you would use #WIDTownHallC19 on the various social media platforms.
I will also put that in the chat for everyone.
I think that is everything to get us started.
I’m going to turn over to Marcie Roth, WID’s Executive Director and Chief Executive Officer who will kick us off today.
Thank you, Marcie.
>> Marcie: Hello, everyone.
I really appreciate having the opportunity to once again bring folks together.
And to get us started this morning I first want to turn over to my dear friend and ally,
German L. Parodi, who is the Co-Exceutive Director of the Partnership for Inclusive Disaster Strategies, WID’s partner today and in all of our disaster and disability work.
German will share his thoughts about solidarity for all who are calling for an end to police violence following the murder of George Floyd.
German?
>> German: This is German Parodi, thank you, Marcie.
The Partnership is a U.S.-based disability-led organization for cross-disability inclusive public health and emergency management.
Last Monday, May 26th, as Marcie just explained and as all of you have may have seen on the news or participated in your country in support against the murder of George Floyd.
We condemn the police violence and racism that has led to this death and so many more.
In solidarity with Black and indigenous communities and people of color, we demand justice for all victims of police violence, across the United States and across the globe.
Systematic racism is not new.
Many of us across the globe have experienced it cross-generationally with different names, colonialism, imperialism, the fact of the matter is right now across the globe we do not need harmful systems, we need to call them out together and create spaces that do not further disrupt the already difficult experiences, that we are all together in experiencing due to this quarantine — the impact psychologically on all of us individually and as a society needs to change because it is people with disabilities, those of us most marginalized that will not see this time through. Please join us along with WID and ONG Inclusiva and so many others in your country, in your community, call out harmful racist systems.
This is not the time to be doing this, in fact, it is time to come together and change.
We need to do this, it is a disaster and it is our focus to reduce their risks.
They are not going to go away in a day.
But when situations like this rise, our traditional systems fail.
We are based, myself and Shaylin in Philadelphia, Pennsylvania, where there is no access to food.
There is no access to pharmacies.
They have been boarded up or vandalized.
The situation must change because there is pain.
And in this pandemic, that is still not going to go away, it is time for all of us to come together with a unified voice of peace, love, and unity.
I’ll close with remarks from within efforts of the partnership, you will find on our website a statement against police brutality and racism.
We are beginning cooperation across our region with the disaster risk reduction and disability networks of Latin America and the Caribbean.
We look forward to further establish a community resilience module that can be in multiple languages with a lens of COVID-19 and public health lens.
The work must continue. We must do it together.
To you, Marcie.
>> Marcie: Thank you very much, German.
We appreciate and respect your leadership and your strong voice, here in the U.S. and globally.
WID joins in the call for an immediate end to police violence against Black people.
The cruel injustices faced by people with disabilities must also end.
WID joins in calls for redirecting funding for mass incarceration and institutionalization.
Funds used for programs that allow and perpetuate violence, abuse, and neglect must immediately be directed to resources, services and programs needed for people to live in freedom, at home and in their community.
Since March, hundreds of thousands of people with disabilities, perhaps even millions across the world, have died from COVID-19.
Disproportionately these are disabled people of color who have experienced violence and neglect that is farther exasperated — exacerbated in disasters.
I also want to take a moment, WID remembers disability justice leader, Stacey Parks-Milbern, founder of the Disability Justice Culture Club, who died two weeks ago.
Stacey and I were allies in our disaster and disability work, and her leadership was and always will be a very bright star for so many to follow in our commitment to relentlessly working towards achieving disability justice in all of our work.
Again, I want to thank everyone for joining us today.
We have had more than 300 people RSVP that they were joining us today on Zoom.
We have many, many others who are joining us on Facebook live.
As you may have discovered from our last town hall, we will be sharing the captioned video of this event on our website as soon as we can get that captioning embedded for sharing.
I am excited to tell you that we have folks joining us today from at least 25 countries.
And from six of the seven continents.
The only continent that is not represented on the call today is Antarctica.
And we need to work to make sure that the next time we all come together that we do in fact have folks joining us from all seven continents.
During our first Global Disability and Disaster Town Hall, we learned some very interesting information from each of you.
We asked some questions, we will also do that today.
And we wanted to understand whether disability-led organizations are able to access disaster relief funding from government, corporations, and foundations.
We discovered that in fact, everyone who responded to our poll agreed that at best, sometimes — only sometimes, folks were left out.
But a resounding 64% told us, yes, definitely disability-led organizations are left out of disaster relief funding.
We also asked, during this COVID-19 pandemic, do disability-led organizations have what they need to serve their local communities?
And only 2% answered that, yes, definitely, disability-led organizations have what they need to serve their local communities in the pandemic.
So, today we will use this time to hear from folks from across the continents who have asked to tell us what their experience is, what the experience is of their disability-led organizations.
And we will get some more information from each of you and we will end the day with some information about where we hope to go from here, where you all might want to be involved in this continuing discussion.
And how we might be ready for the next disasters, whether it is a concurrent disaster to the pandemic or whether it’s any of the disasters to follow.
We’ve reviewed our May town hall and the purpose of today’s webinar.
And I’m going to ask Kat to lead us through our first poll for the day.
Over to you, Kat.
>> Kat: Thank you.
All right.
Launching our first poll.
Our first poll question is, would you like to be a part of an alliance between disability-led organizations and funders that could accelerate resources?
The answers are, yes, definitely.
Or, no.
We’ll give people a little bit of time to vote.
I see about 40% of you have voted so far.
Votes are still coming in quite swiftly.
We have about 60% of the callers have voted.
We’ll give everybody a few more moments.
We still have people coming in.
We’re at 63%.
One more moment.
All right.
Go ahead end the polling here.
I just shared the results.
As you can see, we have 93% yes, definitely.
And 7%, no.
So the overarching majority would like to be part of an alliance between disability-led organizations and funders.
Very interesting and good information.
Shall we start with some of our speakers, Marcie?
>> Marcie: That sounds great, Kat.
Glad to see we have so many folks who want to continue this discussion and continue working together.
Our first speaker is Robert Nkwangu from Uganda. We’re so pleased to have you here, Robert, and look very much forward to hearing from you.
Please go ahead.
>> Kat: Robert, go ahead and share your camera.
>> Marcie: I saw Robert a moment ago but not quite yet.
>> Kat: He is here.
>> Marcie: Give him another moment then we can always come back.
>> Kat: Absolutely.
>> Kat: Just checking in.
Robert?
>> Marcie: This is Marcie.
We’ll work with Robert on technology.
And let’s now turn to Misty Dion, she has been leading a really exciting effort in the U.S. in Pennsylvania.
And we’re pleased to have the opportunity to hear from Misty.
Please go ahead.
>> Misty: Hi, Marcie and all others joining us.
Thank you for having me.
My name is Misty Dion I work with the Roads to Freedom center for independent living in north central Pennsylvania.
I’m a member of our state Pennsylvania ADAPT and national chapters.
And I am the president for the Pennsylvania Council on Independent Living.
Through COVID-19 we have continued to deliver nonessential life-sustaining services remotely and essential and life-sustaining services, often in person, with personal protective equipment and social distancing practices when possible.
We are working even more now, harder now I should say, to save the lives of the many people we serve that are currently locked in congregate settings.
We’ve recently built a program that focuses on providing relief and relocation services for the individuals in these settings.
As you’ve all seen across the nation, congregate settings are both unsafe and inhumane.
In our state alone, 70% of the COVID deaths have resulted from congregated settings.
In the county that we are located in, 100% of those deaths are in one nearby facility, which is what caused us to work with our local hotel owners, restaurant owners, the state, and commissioners to activate this relief and relocation program.
It is our hope that many others will be able to offer similar programs like this so that the people living in the congregate settings have the chance of survival.
In many of these settings they’re sharing rooms with more than two people.
And there’s very rarely a location where they can be safe or practice social distancing.
I hate to use the analogy of these buildings being on fire, but to me, that is exactly what is happening.
In many cases as we see in these settings, when there is a fire, people with disabilities who otherwise could evacuate are being told to bunker down.
We’re against this.
And we’re working hard to free our people locked in these settings.
Thank you, Marcie.
[ loud noise ]
>> Marcie: Thank you, Misty, and very much appreciate your leadership. Unfortunately I now have a very loud noise outside my door, so I’m going to move on very quickly.
Next we will hear from Dayro Reyes from Colombia with Asopormen who will speak about what has been happening in both the healthcare and education sector and the lack of services, and Dayro, please forgive me, I’m sure I butchered your name.
>> Kat: Hi Marcie, unfortunately I don’t see Dayro today.
I am going to — I think we should move on to Asha from India.
I’m so sorry.
Let me see if I can get Asha on.
Asha is connected.
And she is from SMRC in India and would like to speak on issues of women with disabilities. Asha, go ahead and share your camera if you like.
Asha?
>> Marcie: Looks like Asha is having a little bit of technical difficulty.
We’ll give her another minute.
>> Kat: Okay.
There she is.
>> Asha: Can you hear me now?
>> Kat: Yes.
>> Asha: Hi, Marcie.
Good to see all of you.
I wanted to talk about women with disabilities.
Because we have been working on that for a very long time.
And had a big project on Article 19.
Then when the lockdown came, we were told to shut down the whole of the country in four hours.
So you can imagine people without medical, without food. It was a huge issue because we could not get to people physically.
And —
>> Kat: Oh, no.
>> Marcie: One of the challenges, this is Marcie speaking.
Asha is back. Go ahead, please.
>> Asha: We have a strong wind blowing — that’s why power keeps going on and off and the Internet.
But to let you know that the issues of women and disabilities have been mostly food and security.
That has been no food for many of them.
Access to food is very, very difficult and also because all the patients in the hospitals are closed.
They cannot go to hospital to get care for other issues besides COVID.
So that is a major, major issue.
Now they’re talking about bringing telemedicine, and telemedicine without accessibility means that most of them will not get any reproductive or sexual health care at all.
So these are major issues, the third one is that of homelessness.
A lot of people out on the streets, because they have been thrown out of their homes, many women.
And that can create a lot of insecurity, and also a lot of sexual abuse of women.
So that is another issue.
Another one that we are having is with the quarantines.
Though the government has said that quarantine, men and women will be in separate rooms.
But in a school where there are 500 people in the quarantine,
With five toilets, it is not possible to do that.
Again the issue of accessibility into the quarantines.
Many times personal attendants are not allowed, and women find all these issues of very, very big — what cannot be — it’s impossible to work on that.
Especially when you have no access to them.
So we have been trying with the government to sort out some of these issues but we feel that all of you should write to the U.N. agencies that at least to the state parties now since — we should at least tell them that these women —
>> Marcie: While we’re waiting for Asha to reconnect, this is Marcie.
Asha is calling on all of us to write to the Secretary General of the United Nations.
And to the state parties — due to the fact that the conference of state parties for the convention on the rights of persons with disabilities is currently cancelled.
Go ahead, Asha.
>> Asha: So that is one thing that if something could be done for a forum like this to write the secretary general and U.N. agencies to do something it would really be very, very helpful.
We are working in the country, the national disaster management which is now the authority in charge of the pandemic.
I wrote the disability guidelines for them last year.
But that did not include the pandemic.
So now we have to redo the whole thing.
Which we have done to some extent, but is still needed.
We need a lot of legal aid.
And I think one thing that you pointed out we have no funding, zero funding.
How do you work when you have something like zero funding?
The budget for employment for women with disabilities is .002%.
For education it is .03%.
How do you take care or support the services?
I think I stop here because since the power is going on and off.
But if you want anything later we could always chat about that.
Thank you so much, Marcie, for having me.
>> Marcie: Thank you so much, Asha.
Your continued leadership is very powerful model for so many of us.
Your call certainly for funding, but as well for legal aid assistance and your call for all to write to the secretary general and the states parties.
We will follow up and provide everybody with information on how to do that.
Thank you very much.
I am now going to turn to yet another incredible ally.
Eric Rosenthal from Disability Rights International has been working tirelessly on the dangers people face in institutions for many, many years.
I will now turn to Eric to share with us.
Eric, go ahead.
>> Eric: Can you start my video, would that be possible?
>> Marcie: This is Marcie.
We can’t start your video.
Only you can do that.
>> Eric: There we go.
Thank you very much.
Thanks to the World Institute on Disability for organizing this very important event.
Learning a lot from hearing these different perspectives.
I am the founder and director of Disability Rights International.
We have worked for 25 years to bring the protections of international human rights law to protect people with disabilities.
We’re especially concerned about children and adults who are detained in institutions where they are subject to the most severe abuses known to humanity.
International human rights law not only protects their rights, but protects their rights to be part of society under the U.N. convention on the rights of people with disabilities.
The problems that we’ve been seeing here in the United States, very high death rates in nursing homes and other institutions, we are seeing growing rates on a grand, grand scale on the international level.
It’s not just elders.
It’s a broad array of people in many, many countries.
There are ten million children in institutions.
Two, three, four times that many.
We are concerned here in the United States about the incarceration of people based on race and other forms of oppression.
Well the institutions of the world are the dumping grounds for people based upon their disability.
Based on LGBT identification.
Women are subject to violence and trafficking.
And now we’ve spent years worrying about the dangers of institutionalization – in the COVID-19 epidemic, we are seeing very high death rates and great, great dangers.
One of the earlier speakers likened this to a house on fire.
That’s exactly how we see it.
And immediate action needs to be taken.
Not only to protect people inside these institutions, but to call into question why are they there in the first place.
To get them out of the facilities as soon as possible.
The U.N. high commissioner on human rights has adopted a very important resolution to governments and to international aid agencies around the world.
I’m going to quote from it.
It says, it calls on governments to “Discharge and release persons with disabilities from institutions and promptly ensure the provision of support in the community and fund those support services.”
And maybe even more important, it says that we need to “recover better by adopting and reinforcing deinstitutionalization strategies to close institutions and return people to the community.
Strengthening supports and services for people with disabilities and older persons.”
It’s a powerful mandate from the international community to end institutionalization, not wait for the end of the emergency, do it before the next wave.
My organization in alliance with activists throughout the world are putting on two important webinars next Thursday and Friday.
I’ll put the link in the chat on this Zoom.
We will have announcements on our website at DRIadvocacy.org.
The U.N. Special Rapporteur on disability, Catalina Devandas, will be speaking out on this.
The chair of the U.N. committee on the rights of persons with disabilities from Nigeria, Danlami Umaru Basharu will be speaking out on this on Thursday the 11th.
Very important.
Please join us.
On Friday we will be holding a webinar in Spanish that focuses on both the global challenges and the challenges to implementation in the Americas.
Amalia Gamio from Mexico who is a member of the CRPD committee will be speaking.
Along with Maria Soledad Cisternas who is the United Nations General Assembly’s special representative on accessibility for people with disabilities.
And historic first, the president of the inter-American commission on human rights, Joel Hernandez and Esmeralda Tritiño from Jamaica who is the Rapporteur on the rights of the child. This is an incredible combination of people in the mainstream human rights community and the disability rights community coming together to demand immediate action to get people out of institutions now.
And bring them to safety.
We must work together.
Please look at the DRIadvocacy.org website for information how to register, please join us.
Thank you very much.
>> Marcie: Thank you so much, Eric.
We applaud your ongoing powerful leadership and want to join you in any way we can to support the work that you’re doing to amplify next week’s events and on an ongoing basis, connect the folks who are committed to doing this work to you to make sure we are able to work in support of the efforts underway.
>> Eric: Thank you for your support.
Really appreciate it.
>> Marcie: Absolutely.
Lead on.
I see that Robert is back on.
But are we going to Rachel and then to Robert, Kat?
>>Kat: Correct, yes, we’ll hear form Rachel next.
>>Marcie: Very good.
I am now going to welcome Rachel Inegbedion with Special Needs Initiative for Growth from Nigeria.
Welcome Rachel.
And again I apologize if I didn’t quite get your name right.
Please help me to get it right next time.
>> Rachel: Can you hear me?
>> Kat: We can.
>> Rachel: Thank you.
Good afternoon, everybody.
My name is Rachel from Nigeria.
And I am the founder of Special Needs Initiative for Growth.
We provide empowerment tools and resources for people with special needs to get linked with jobs and entrepreneurship.
Today I’ll be talking about how we can support people and students with special needs, especially in developing countries during the pandemic era.
Now, inclusive education is part of the natural course of the sustainable development goals and in setting the education agenda, to protect the needs of children and discouraging any form discrimination, irrespective of their physical, intellectual and emotional challenges.
Secondly, in Africa it is estimated that a total of over 85 million people with disabilities.
A common story across developing countries, an accelerant of developmental disabilities varies from 0.4% to about 12.17% and then 20.4% have developmental impairments among other physical, sensory, and intellectual disability.
Now, given the circumstances surrounding the global pandemic, students with disabilities in developing countries like my country, Nigeria, have been deprived, excluded, and segregated from — and educational resources, as compared to their non disabled peers who have gained remote learning and other learning opportunities.
It is quite obvious that we need to do more in terms of providing students with disabilities with viable alternatives.
Before we talk about solutions I would like to highlight a few challenges that students with disabilities in developing countries experience, although some developing countries are making distance learning, video, television platforms for their kids to meet their needs.
But for physically challenged children, most of the accessibility settings available in online learning may not be good for them because they’re not designed specifically for special education. For example, graphs, charts, and mathematical models may not be correct for someone who is visually impaired.
Also video programs for people with hearing impairments, they may not be able to afford a sign language interpreter, and talk about the data or Internet connectivity – for some of the parents with special needs is really very expensive.
Now some of the parents in developing countries like Nigeria express great concern of not being able to have a proper work from home balance with their kids.
They get some professional caregiving but school provides special incentives for their children. They prefer to put their kids in school.
Not being in school for kids with special needs adds frustration for the child, and can even increase aggression, anxiety, and eventually depression — more over, school teachers in developing countries, some of them are experiencing difficulty in contacting families of the students with special needs.
Some of the parents don’t provide the right data, and teachers get so busy because of the complications and important — now I would like to highlight some of the key solutions.
This is a period where we need to see ourselves as interconnected.
There are no countries unaffected, developed and developing countries are still working towards sustainable development goals for inclusive education for all children, irrespective of disability. This pandemic has taught us to be our brother’s and sister’s keeper, helping push us to provide alternatives and supportive learning for children with special needs.
Even if you’re not a teacher, caregiver or special needs educator or even a parent, all we need to do is encourage our natural human-ness as we learn to develop small community problem solvers, where all members of the community are working to create adaptive learning opportunities with each student with disabilities for successful collaborations between home and school. Creating a network of small community-based disability practitioners who are the link between home and school to help with accessibility and disability-specific needs, as well as their particular skills also.
This is the best time for developing countries to formulate national policies on inclusive education.
The pandemic is unique, but for developing countries we should learn how to to affect positive and lasting therapeutic and academic changes for students and persons with special educational needs.
It should be intentional about helping students with disabilities to go along with their counterparts.
Now, to end this I want to it’s really important to see that a child with disabilities is a child first.
And we can focus on raising this child as part of a community.
Secondly, childhood is a critical time for development of a human being.
Whether we like it or not, it sets the foundation for your adulthood — it’s really key that we ensure to bring our children and others with disabilities into the community for stronger and resilient adults, which in turn will create a better future for this world that we live in.
Thank you so much for listening.
I’m open to questions.
>> Marcie: Thank you so much, Rachel.
Really appreciate all that you’re reporting on and want to make particular note to your comment about what an important opportunity we have before us right now.
We have a big decision ahead of us.
Do we go backwards?
Do we stay stuck where we are?
Or do we seize the moment and use all of the crisis around us to move forward and particularly with a commitment to children and adults with disabilities,
Who can in fact be very much a part of the change that needs to happen.
But it will require intentional effort.
So thank you very much, Rachel.
And I think hopefully we are ready for Robert. [beeping sound]
I think we need to mute Robert’s video — there we go.
Thank you.
Welcome, Robert.
We are so pleased that you were able to make your technology work.
Look forward to learning from what you have to tell us.
Please go ahead.
>> Robert: Yes, good afternoon.
Good afternoon to all.
I am happy to be here and I have my Ugandan interpreter here with me.
My Ugandan interpreter will speak with me, I believe, rather than the American interpreter or international sign interpreter.
>> Interpreter: I believe he needs the sound back on
>> Marcie: This is Marcie.
What we’ll do is mute Robert’s video.
Thank you.
>> Robert: Can you hear me everyone?
>> Marcie: This is Marcie.
We can —
>> Robert: I want to talk more about disability and the challenges connected to COVID and the lockdown —
[ loud echo ]
[ inaudible ]
>> Marcie: Robert?
I’m going to pause for a moment.
I believe your interpreter is getting picked up on the sound on your computer.
If you can mute your computer as well as muting here then let’s try that one more time and otherwise we will ask the international sign interpreter to step in.
>> Robert: [signs, no audio from Ugandan interpreter]
>> Marcie: Looks like we need to use the international sign interpreter.
>> Robert: Okay, hello.
Hello, everyone.
Very good.
I’m not sure if my interpreter is going to speak or…?
>> Marcie: This is Marcie.
We were getting a lot of feedback.
If your interpreter is on the same computer then we can mute — I’m sorry.
If your interpreter is not on the same computer then they need to mute their sound and speak through your computer.
>> Robert: Is it better now?
>> Marcie: No, I’m afraid it’s not.
Shall we have —
>> Robert: Is it good?
>> Marcie: No.
It’s only good when we hear the international sign interpreter, when your interpreter there’s echo or else we don’t hear your interpreter at all.
>> Robert: Okay then I’ll use the international sign interpreter then.
Well, thank you.
Thank you so much.
As I was saying, my name is Robert and as I said I work in inclusion and disability here in Uganda.
And I am focusing in particular on the lockdown and that issue in the lockdown.
I think my interpreters will work better my interpreter can speak it more clearly.
Now here in Uganda, we are on lockdown.
And the government, of course, has issued this, telling people all to stay in their homes.
And as a result people have no work and they stay in their homes.
But the people who have disabilities, for instance people who use sign language, are unaware of this.
They’re unable to access food and they’re also living out on the streets often.
And have no homes to stay in for the lockdown.
So their life, their electricity is also cut off.
And they go without food.
And there’s also a problem with getting food to people so that people are suffering from food insecurity.
So people are now without employment as they stay in their homes.
And as a result people are hungry, they are without food and so now I’m trying to take the lead on working with those people as many of them are asking me and reaching out to me with this need.
Asking for food in particular.
So that we can easily distribute the food to those people who need it.
And this is because the government is unaware of this, they do not communicate well with people who use sign language.
The government knows nothing about people with disabilities.
So this is an ongoing frustration.
People with disabilities — there’s no information for people with disabilities, no information on the television.
They have no access to this information.
So organizations of the DPOs have been contacted asking for help and we are responsible for providing this food as a result.
But it is my feeling that this responsibility truly belongs to the government and we cannot do this alone.
We are unable to do this alone.
We need to disseminate this information and there needs to be technology available to provide this information to people with disabilities.
This is in particular a problem for people who are Deaf and people who are Deaf-blind.
We have a large number of people who are in this situation, they depend on information through tactile sign language and they’re not receiving this information.
So we must go lobby the government to provide this and in particular to create a task force
so that we can increase the number of resources available for these people with disabilities.
And they can have increased representation, in particular, on that task force within the DPOs.
Because DPOs have no authority to make these changes.
We depend on support from the United States and from Europe to provide funding to our organizations.
But our government itself is not providing any funding or any support to our DPOs so we must lobby those governments to provide additional support so that we can then use the funding that they give to meet the needs of the people with disabilities.
And it’s so important that we do this, absolutely essential.
Thank you.
>> Marcie: Thank you so much, Robert, for your hard work, for your leadership and for this very important call for resources.
I would like for us all to focus a little bit more on resources.
The next poll addresses exactly that.
So let’s turn back to Kat and she’ll take us through our next opportunity to provide feedback.
>> Kat: Thank you so much, Marcie.
All right.
One moment please.
There we go.
I will be launching the next poll.
The next poll question is, what resources are most needed to support disability-led organizations?
You can select all that apply.
The options that we have listed are funding/monetary assistance,
Technical assistance for remote work operations,
Communication or office equipment for remote work,
Disability equipment, interpreters or other accessibility accommodations,
Personal care attendant services,
Personal protective equipment,
Legal assistance,
Training on any of the following: preparedness, capacity building, bias, rights,
Education and child care supports,
Or other: If we missed what your greatest need is please go ahead and put that in the chat box and we will collect them as well.
I can see that people are voting.
I will give them just a few minutes to do so.
At the moment it looks like funding is the top aid needed.
And training.
Sorry, disability equipment and accommodations is the next one.
The numbers are jumping.
Give people just couple more minutes.
There is still voting happening.
Okay, great.
I will end the polling.
And share the results.
Let’s see what people said.
Funding is by far 93% the top resource needed currently.
It does look like disability equipment, interpreters and accessibility accommodations is the second greatest need with training being the third.
That’s actually quite fascinating.
Again, if we didn’t list a resource need that you personally have, please do put it in the chat box. Wow.
Thoughts, Marcie?
>> Marcie: Thank you very much, Kat.
I’m also going to look at the additional, the others that are coming in on the chat box.
Those include volunteers, addressing systemic violence and mental health,
Our elected officials to be held accountable,
Assistive rehabilitative and adaptive technologies,
To meet the needs of various people with disabilities.
Accessible information and communication technology.
Person to person compassion is a big one, even in business.
Funding to support/provide stipends for caregivers, interpreter access.
Accessible information.
Humane leadership.
Really important identification of really important needs.
We also just heard, need home ventilator supplies, food deliveries meeting dietary needs.
Feel free to keep adding to that list.
And while people keep sharing that, we are going to turn to our next speaker.
Our next speaker is someone who I have been spending virtually every day with, thanks to the Partnership for Inclusive Disaster Strategies, we have a large group of people focusing on disability rights and needs of people with disabilities in the pandemic.
And one of our daily partners who has been with us is Kelly Israel from the
Autistic Self-Advocacy Network.Kelly, you can talk about what ASAN is working on.
>> Kelly: Can everybody hear me?
>> Marcie: Yes.
>> Kelly: First off I apologize for spamming you with my presence, Marcie, that is how the cookie crumbles.
I am — my name is Kelly Israel I am policy analyst at the autistic self-advocacy network.
ASAN is the United States-based 501(c)3 that is our nonprofit designation for those overseas.
A nonprofit advocacy organization created by and for autistic people ourselves.
In short, we are an all autistic, that is everybody who works at our organization is autistic, including me.
Disability rights organization, advocating for the self determination and civil rights of autistic people at the local, state, and national level in the U.S.
And so as you might expect, we have like all other disability rights organizations, become deeply committed to ensuring that the toll COVID-19 is taking on disabled lives is known.
And that the rights of people with disabilities during this horrific pandemic are respected.
So to that end, ASAN is creating a COVID-19 tracking tool.
That tracking tool records the number of confirmed COVID-19 infections and deaths in residents who live in congregate settings in the United States.
So by congregate settings, we mean locations where large numbers of primarily people with disabilities live.
Where they have very little choice and control.
So we’re thinking of settings that are very similar to the institutions that Eric Rosenthal described, although some would not describe themselves as such.
We’re talking nursing homes, psychiatric hospitals, some veterans’ homes in the United States, group homes, institutions that house mostly people with intellectual and developmental disabilities, some countries call these individual people with learning disabilities, which means something totally different in the U.S. but terminology aside, and assistive living facilities that help people with Alzheimer’s disease.
We’re talking places with large numbers of disabled people clustered together and isolated from the broader community.
So one of our reasons for tracking specifically congregate settings was to try to create a means of determining and sharing publicly the incalculable death toll for people with disabilities during this pandemic.
We’re using congregate settings because residents of these places are most likely members of our community.
Because so many of us live there, deprived of control of our own lives, and as Eric pointed out, in deplorable conditions often enough.
Another way was to try to show the damage that congregate settings wreck on the health of people with disabilities due to their design.
Congregate settings cluster people with high risk of complications from a severe illness together and restrict their movement.
These institutions are hot beds of COVID-19 activity.
There some are states where they make up over 70% of the cases or the death toll from COVID-19.
So in the United States where we’re running this tracker, we collect three kinds of data.
One, individual, reliable news articles from media outlets online.
Either from local news channels and websites, statewide websites or nationally prominent outlets like CNN and NBC national.
These articles list the number of resident infections and sometimes deaths in a specific congregate setting.
Like there could be an article from a local newspaper which describes the number of infections and deaths that have occurred at specific local nursing home in Missouri or something.
For example.
And that goes into the tracker.
Then we’ve got reports and news articles that give the data for specific entire counties within a state.
So many of you probably already know this but the states in the United States are divided into individual counties.
And some news articles give the numbers for a specific county.
Like say Prince George’s county in Maryland, for example.
We include that data in the tracker, too.
The third kind of data we’ve added are reports and news articles which provide some of the numbers for an entire state, such as data released by state health agencies.
So, for instance, Maryland’s Department of Health and Human Services or something.
Data released from these agencies on COVID-19 infections and deaths in long-term care facilities, which are usually nursing homes and psychiatric institutions exclusively,
But there’s a rule in the United States from an agency called CMS, which says that each state has to release data on how many COVID-19 infections and deaths occur in long-term care facilities.
As far as I know, no state has interpreted this requirement with any consistently with any of the others. Some of them interpret it to mean only nursing homes.
Some of them interpret it to mean everything from group homes to psychiatric hospitals.
But the short version is that the data is not comprehensive and that’s why we still exist.
It doesn’t cover all of the settings we’re thinking about.
All of these isolated settings where people with disabilities live and are taken away from the broader community.
So, of these three kinds of data we collect we input all this data into an Excel spreadsheet, which uses a formula to sort of add it all together and get accurate numbers for the state, for the counties and for each setting.
So the data isn’t perfect.
Sometimes we don’t have enough accurate information or the data blends numbers from residents and staff together.
We only want data on the number of infections and deaths for residents.
Not the data for staff.
Because these aren’t people with disabilities.
We’re also using the highest available numbers.
Because we believe that COVID-19 cases in these congregate settings are being undercounted and underreported.
But we’re doing our best to keep it as accurate as possible.
So if with this information out there by virtue of collecting it, disability rights advocates in the United States can utilize to make arguments for community-based services for people with disabilities and to try to evaluate the damage that’s been done to our community by these places and by COVID-19.
We do plan on keeping ourselves involved in the disability rights and disaster space beyond COVID-19.
And beyond this project and the disaster we’re going through as an international, national community right now.
I was already a member of a local, that is District of Columbia, city that I live in, advisory committee working on disaster preparedness before the pandemic struck.
And I plan to ramp up my involvement in disability rights disaster preparedness task forces throughout the movement.
We want to make sure that the voices of actual people with intellectual and developmental disabilities are heard.
So that our rights and needs when the worst comes to pass are respected and understood.
The main thing we were in need of at this stage of our project – we do have a grant to do this – are volunteers.
At the moment the COVID-19 tracker is being run by three people and one of them is me.
Never a good idea.
But, no, in all seriousness, I’m one person who is entering most of the data and I rarely have enough time to do it all in my day.
We’ve created an online form for people to submit information to the tracker, which is mostly designed for individual settings but we’re trying to get it set up so that state by state it can be included.
Any help that people can give just bringing new data to our attention and inputting new data into the tracker is greatly appreciated.
We need all the help we can get to get this thing in order.
Thanks so much for giving me the floor for this three to five minutes.
I was happy to share.
And if you see any individual settings or data that should be drawn to our attention, please submit it to the form.
I would be happy to input into it the tracker.
>> Marcie: Thank you so much, Kelly.
And I was especially pleased to hear that you are going to continue to work on disability and disaster.
Unfortunately, before the global pandemic, there were not a lot of folks working on what happens before, during and after disasters for people with disabilities.
It’s wonderful that there has been much more interest during the pandemic.
We are extremely hopeful that people will stay involved with the leadership of organizations like the autistic self advocacy network, and your persistence, Kelly, and persistence of your team.
I have great hope that we’ll make very significant progress in inclusion and leadership of people with intellectual, developmental disabilities.
And our siblings who are really counting on us to continue to elevate around institutionalization and disasters.
Thank you very much.
I have several people in the queue.
So we’re going to be mindful of time.
I think all of the folks who had requested in advance have had the opportunity to speak.
And now we’re excited to have some additional folks so I think first we’re going to turn to an old and fabulous disability — you’re not old.
Old friend and fabulous disability rights leader, Alan Holdsworth.
Alan, please go ahead.
There you are.
>> Alan: Hi.
I’m going to be very, very short.
We are planning a worldwide event in December around the United Nations international day.
We’ve already got Australia, Brazil, America, Europe, all together.
It’s going to be called Live Aid.
It’s going to be mixture of disability art, disability information, disability protests.
It’s going to be 24 hour event, going all the way around the world and going to put in the chat line the link to it.
If anyone would like to get involved with that.
There is a Facebook group, request to be joined.
We have had a meeting to talk about this afterwards.
It’s something positive I can put out there to get people around the world to talk about what is happening in their country.
Thank you very much.
>> Marcie: Thanks so much, Alan.
Sounds like a wonderful opportunity and we very much encourage everyone to get involved and you can certainly count us in.
Next I am going to turn to Lisa Seeman who has joined us and would like to speak.
Go ahead, Lisa.
>> Lisa: Thank you so much,
Marcie and Kat.
So, I work for the university, but more importantly I work on the task force on accessibility for people with learning and cognitive disabilities inside WCAG, who make the international standards for the web accessible content.
So we’ve been making a big document on what to do to accommodate people with learning and cognitive disabilities.
And then COVID came along and we became very well aware that this large, comprehensive document that takes you through the whole life cycle of making content, was too long.
I had a look for some grants, but honestly as a slightly slow reader they were beyond me.
We just did it.
We made a few additional one pagers, ten tips on what to do to make content more usable for people with COVID-19 and disabilities.
Then a short page of four getting started points, if you like.
So if you have ten minutes or if you have an hour, or if you have three days to start making content, what do you have to do?
Because what was happening, or at least what was happening to me, is if I was trying to get information, it was hard to get that information – it would be on the web, then a phone number.
And the phone number takes me to one of these awful menu systems if you don’t have good communication skills and good short-term memory you can’t manage the combination of skills required to get to help.
So you can’t get the help.
Then this is people living alone have less contact than they used to.
So this is for people who aren’t in the institutions but at home they can normally manage but now they don’t have their normal help, support system coming in on a regular basis.
Or at all.
And then where do they find out, I was trying to find out am I a vulnerable person.
I couldn’t get that information from anyone.
So that kind of thing is more critical now, it’s always important.
But now with lockdowns and stuff it’s even more important that people can access this information and get the help they need.
Independently.
That is the key word.
So we’ve made this additional guidance really short, pointed advice.
That even if you just have ten minutes you could look at and pick something up.
Hopefully that will help people get the information they need.
I think what we’d really like is for it to get out to the people writing the content, that they should be aware that this content exists to support them, support us.
I’m also extremely happy for any comments, what should be changed both for guidance and the tips and getting started.
If that’s okay I’ll put it in the chat.
If anyone can to disseminate it, send it out that would be lovely.
Very appreciated.
If anyone wants to contribute, always happy, always need more people.
>> Marcie: Thank you so much, Lisa.
Great and important work.
We’ll be sure to share it around.
We always appreciate the work that comes from the W3-ICT and work that is coming out around communication accessibility.
We have a comment from Facebook.
Kat, would you like to share that comment?
>> Kat: Absolutely.
So I have one here that says, listening from the U.K.
I feel that the world has not listened to or recognized the positive contributions to the world.
People in the U.S. are not being supported and helped with this COVID-19.
Disability is being used as an instrument to say their life is not important.
And I have one more.
We, the North Hampshire British polio fellowship have been here in the global virus pandemic epidemic before with polio in the 1920s to the 1950s.
With many of us being placed in full body length ventilators or iron lungs.
Many of us survived and are still living today.
And thanks to the development of a polio vaccine in the ’50s, polio is not around today.
However there are in recent years many parents who are refusing to vaccinate their children of polio or measles and thus there is fear of old pandemics and epidemics coming back around the corner, in addition to COVID.
Hopefully a vaccine against COVID-19 is developed and it will be accepted worldwide that vaccinations are really important.
Thank you.
Those are some comments we had on Facebook.
>> Marcie: Thank you, Kat.
I have one other from Zan Thornton.
How do we disabled become valued?
Bill A. has ALS so when his awful nursing facility got COVID, his family signed a DNR as soon as he went to the emergency room.
Luckily his friends, advocates, the partnership for inclusive disaster strategy, WID and friends got DNR not implemented.
He’s alive, off vent, and getting a local center for independent living and friends to transition him to a better place.
The question is, he lived because of advocacy, but how many of us will die because of the devaluation of our lives?
What can we do?
Of course many things, but your suggestions, please, including nonviolent protests.
>> Marcie: Thank you.
Your message, Zan, is a really important one, bringing folks together through this forum, continuing our active participation led by organizations like the partnership for inclusive disaster strategies, ONG Inclusiva, and those of us who are focusing on disability rights and disasters.
These are all the important things that we can do, and we invite our interested partners from business and industry,
Our corporate and foundation funders who have come to us and asked us how they can be more targeted in how they can support disability-led organizations in preparing for, responding to and recovering from disasters.
We’ve heard what you all have said.
We have heard what they have said.
And we have a clear mandate to move forward with the Global Alliance for Disaster Resource Acceleration.
We will be rolling out the alliance on July 9th.
We will invite all of you to be with us as we move from words into action.
And more information will be coming.
We’re very excited to have so many people from so many places joining together and we follow your lead when you tell us what is important and when you tell us what it is that is needed.
So, as we wrap up, I want to turn back to Kat who will be providing us with our closing poll.
This one will be shared now and then the results will be shared in our follow up.
Kat, please share that final poll.
>> Kat: Yeah, thank you, Marcie.
I’m launching it right this moment.
The question we have as our last poll is,
Would you like to participate in a Twitter town hall, continuing this discussion?
We have quite a bit of folks voting. 37, 47.
We have 67% yes.
33% no.
But we’re still getting some votes in.
>> Marcie: This is a really important question, because
we want to know whether Twitter is a mechanism, a technology tool that folks want us to incorporate.
In addition to these kinds of discussions.
We’ll also be asking later on as a follow up about other technological strategies for engaging discussion.
I guess we are going to share the final results.
>> Kat: We sure did. We’re at 63% yes.
37% no.
So it doesn’t look like Twitter is for everybody.
But the majority would be very interested in a Twitter town hall.
>> Marcie: And with that, I want to once again thank all of you for making the time and making the effort to be with us.
We are very appreciative of all that you’re doing and we look forward to having you all join us on July 9th.
And in the work that we’re doing, before, during and after disasters as we move forward.
Thank you to each of you and please keep letting us know what it’s going to take for us to collectively do a better job in all aspects of our inclusion.
Thank you very much.
Be safe and well. See you soon.
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