Long COVID, Variants, and Surges: The Effects on Individuals with Disabilities
As we move from a COVID-19 public health response to individual risk/responsibility, what are the implications to individuals with disabilities and caregivers?
A conversation on June 16, 2022. Recording includes ASL interpretation. Presentation begins at 2 minutes and 50 seconds:
KATE FIALKOWSKI: Good morning, everyone. My name is Kate Fialkowski. I'm with the Institute on Disabilities. You were all waiting with me as we wait for our transcription. And I want to let you know that we're starting this morning with Zoom Live Transcription while we wait for the human transcriptionist to join us this morning.
So I apologize for any confusion that this causes when our transcriptions roll over. Zoom makes things interesting, doesn't it? But I can at least say at least we didn't all have to drive someplace in thunderstorms this morning for this conversation.
Before we begin, let me start with just a few details about this session. This session is being recorded, and the recording of this session with the transcript will be available on our website in a couple of weeks. And throughout this event, we'll be sharing the link to the website. On that website, you have an agenda of speakers, and you have additional information.
This session, as you can see, has ASL and CART transcriptions. You were provided with a Zoom link. And this one Zoom link is effective for the entire time. If you need to step out of the room, you can rejoin us with the same link.
We encourage everyone to participate in conversation today, so please feel comfortable to use the chat to have a conversation with each other. We really welcome your conversation. And if you have a question, please use the Q&A feature to join us with a question. Of course, this is meant to be a public event. So we hope that you'll keep all of your comments and your questions civil so that we have a civil dialogue.
One last thing that I'd like to mention is the topic of COVID can be worrying, and it also may make some of us sad. We certainly have, as a community, lost many things during this time of the pandemic. So I want you to take care of yourself during this session. And if you need to step away, I hope that you will do so and take care of yourself in the conversation. So thank you so much for joining us.
Our first speaker this morning is going to be Dr. Sally Gould-Taylor, who is the Executive Director at the Institute on Disabilities in Temple University. I'm going to bring Sally into the room. So Sally, if you can turn your video on and your microphone on, I'm going to bring you into the spotlight.
SALLY GOULD-TAYLOR: Good morning, everyone. As Kate said, I'm Sally Gould-Taylor, and I'm the executive director at the Institute on Disabilities at Temple University. We're Pennsylvania's University Center for Excellence in Developmental Disabilities. I want to welcome you today to today's minicourse lecture.
This is a lecture in a part of a series that we do all year long to engage in a statewide conversation. And today's conversation is about long COVID, COVID variants and surges, and its impacts to individuals with disabilities as we will also be hearing about impacts to caregivers as well. This topic is timely, as we continue to experience different variants and surges of COVID. And we're beginning to hear of something called long COVID, or COVID that can take more than a month in recovery.
At the same time, we are beginning to move from an all-hands public health response to an individual risk response. And many people are asking questions about these variants in COVID and changes in policy and what they mean and what are the implications to individuals with disabilities and our larger caregiving communities.
Before we begin, I want to offer our appreciation. We thank you, the audience, for your attendance this morning. And we hope to engage in a robust conversation and share some information and meaning-making around these changes. And of course, our thanks go to the individual speakers who agreed to take time to bring you this important information.
We're grateful to our cosponsors for their collaboration in bringing this event to you. Thanks go out to the Leadership in Education in Neurodevelopmental Disabilities at the University of Pittsburgh School of Medicine, the Philadelphia Mayor's Office for People with Disabilities, the Department of Public Health for the City of Philadelphia--
--of Home and Community Based Services, or HCBS, policy implications that have learned from the COVID--
KATE FIALKOWSKI: Sally, we seem to be having some difficulty hearing you. You're coming in and coming out. I think we lost Sally. Ah, this, I think, is one of the limitations that we have of the weather this morning. Sally, you're back. Would you like me to bring you back in the room?
I'm going to summarize the end of what Sally was saying. We've had a number of sponsors to help bring this event to all of the attendees. And gosh, I see that there's 104 attendees in the room. So thank you all so much for joining us this morning. I want to say how much we appreciate our sponsors-- the LEND, the City of Philadelphia Mayor's Office for People with Disabilities, and also our county offices of Allegheny County and Philadelphia County Departments of Health. Thank you so much for your sponsorship of this event.
Our first panel this morning is a panel of lived experience. And so we're going to start today's session talking a little bit about real lives, and what is happening during the pandemic, and what's happening in some of our communities in the pandemic. So I'm going to bring the first panel in the room. If you can please turn your cameras on and open your microphones, and then I'll bring you into the room.
Just one moment, everyone. Thank you, Marisol. I see you. I'm bringing you into the room. Thad, I'm bringing you into the room. Justin, I'm bring you into the room.
I sent a message-- we should have another individual who's joining this panel, Robert Evans. And I don't see Robert Evans in the room, and I sent him a message. So something may have happened this morning. And if he joins us, then I'll be bringing him into the room afterwards. So thank you.
Oh, where-- wait a second, everybody. Robert, I see you. Hang on. I see you. Hold on a second. Just one moment, everybody. Robert was in as an attendee. So we're just switching over. Just a moment, please.
ROBERT'S MOTHER: [INAUDIBLE] We're here. [LAUGHS]
KATE FIALKOWSKI: Robert, are you there?
ROBERT'S MOTHER: Yes.
KATE FIALKOWSKI: OK, I'm going to bring you into the room. Are you ready?
ROBERT'S MOTHER: Ready. All right.
KATE FIALKOWSKI: There we are. Thanks, everybody. OK, so this is our first hurdle.
ROBERT'S MOTHER: All right, [INAUDIBLE].
KATE FIALKOWSKI: Thank you so much for being in the room. And the first thing I'd like to do is I'd like to go around the room--
ROBERT'S MOTHER: Yeah.
KATE FIALKOWSKI: --and have you introduce yourselves. And so I'm going to do this in a different order just so I can give you a couple minutes to get into the room, Robert. So Marisol, would you just introduce yourself first?
MARISOL RAMOS: Hi, I'm Marisol Ramos and a mother of two beautiful young adults with special needs, and I live in Philadelphia.
KATE FIALKOWSKI: Thanks, Marisol. Justin?
JUSTIN BROWN: How you doing? My name is Justin Brown. I'm a program specialist at the Barber Institute.
KATE FIALKOWSKI: Thank you, Justin. Thad?
THAD JACKMAN: Good morning. I'm Thad Jackman.
ROBERT'S MOTHER: You should--
THAD JACKMAN: I'm a director for the Barber National Institute, a provider agency that's located all across the Commonwealth.
KATE FIALKOWSKI: Thank you, Thad. Robert.
ROBERT EVANS: My name is Robert Evans.
KATE FIALKOWSKI: Thanks for being here. I'm glad that I was able to-- thank you for also putting in the chat so that I could see where you were and I could bring you into the room. Thank you. OK, so my name is Kate, as I said before. I work at the Institute on Disabilities. And also, I'm a sibling. And we have a lot of people with disabilities in our family.
And this is really a matter of great importance to me and I'm sure to you. So I'd love to hear what you have to say about your experience in COVID and anything that you want to share with our audience. Robert, would you like to go first?
ROBERT'S MOTHER: He's coming.
ROBERT EVANS: Hi, my name is Robert Evans. I am 26 years old. I just turned 26 three days ago on June 14. I live in West Grove, PA, about a good one hour from Philly. Today, I was asked to talk about my life in COVID and my after life COVID. But first, I will tell you what I like to do. I like elevators, dogs, horse riding. Also, I have a story to tell you later on almost cast my life.
ROBERT'S MOTHER: Cost his life.
ROBERT EVANS: But before I will get to that, I will talk about my before-COVID life. My life was busy before COVID. I was going here and there six days a week to Best Buddies and TDU and more. Then in March 2020, Trump said this COVID is getting too bad, and we have to close everything down for two weeks.
Yeah, right. He was saying that for his TV fun. We did not open up until late 2021. He made that all up.
Not one week later in this COVID lockdown, I started getting emails, texts saying, Best Buddies is canceled. TDU canceled. Horse riding also canceled. You can see I had life before COVID, but COVID ripped all of it away from me in a week. And I had to sit at home for a year. You can now see what COVID done to me over one week.
Then they say, we have to put on masks to keep safe until this goes away. I do not like masks because I can't hear everyone talking to me if we are on Zoom or at Walmart because it's not so easy to hear you if you have a mask on. So my life changed a lot after COVID by a lot.
I can't tell you them all, but I will tell some of the changes in my life after COVID. I am working with someone in Philly with my COVID story. I am going to be on the fast team.
Now I will tell you that story I have. I went to a ER to get help. But you think that they will help me?
ROBERT'S MOTHER: ER.
ROBERT EVANS: On 10/31/2021, we was driving to my [INAUDIBLE] in Elkins Park. But we did not make it to Elkins Park because I passed out on 926. I went to a ER to get help. But you think that they will help me?
ROBERT'S MOTHER: Emergency room.
ROBERT EVANS: Not. Not. They keep me overnight to run tests. Yeah, right. Overnight, my ass. I was scared of my L-I-F-E. I was scared of my life.
ROBERT'S MOTHER: He wanted me to pick up here. We were driving down 926, and he passed out and literally became unresponsive. I'm mom and also an emergency room nurse. And when he became unresponsive, he came around long enough for me to say, do you need help? Are you OK? Do you need to go to the ER? He immediately said yes. And he can be blue and missing a limb and would not need to go to the ER. He would tell me no. So I immediately called 911.
And when they arrived, because he's non-verbal and because of COVID, they really did not take the time to listen to me to hear that he has a baclofen pump. He was less than a week out of the OR. He was on Valium. He was on pain medication. So it was a seizure.
When we got there, of course they wouldn't let me right back with him. And I knew that when he comes out of a seizure, he gets combative. And because I had his communication device in my hand, I could see that he was coming around, and they still would not let me back to him.
As his voice, as his arms, as his legs, as his mom, I knew what I needed to do. I knew that I needed to be by his bedside, and they would not let me back there. Finally, I did get back there. The triage nurse came and got me. But they still would not listen. Four days in-- now he wants to talk.
ROBERT EVANS: They did--
ROBERT'S MOTHER: They did blood draws is what he's saying. They woke him up with a needle without asking him.
ROBERT EVANS: [INAUDIBLE]
ROBERT'S MOTHER: They did OT on his arm less than a week. He hadn't even seen his surgeon yet, and he had surgery.
ROBERT EVANS: They EEG.
ROBERT'S MOTHER: EEG without asking him. So this was all because I was not in the room in his immediate area to say, no, he doesn't need an EEG. They even tried to do an MRI, which would shut down his baclofen pump and would have killed him. So at that point, I, of course, lost my mind.
And they, instead of hearing us and hearing him, called what's called a Code Armstrong. And Code Armstrong is security. Security came to our door with six other staff and said to me basically that I didn't know what I was saying, that they knew what they were doing, and that they were going to do what they wanted to do, basically, essentially.
And even though over a course of four days I begged, I pleaded, I screamed for them to call his baclofen pump doctor because I knew with the surgery, I knew with the medications that there could be a difficulty with the pump, which, again, could kill him, and they would not listen. So once I lost my mind, of course, then they listened. And they called security to the door.
And I said again, call his doctor. She's the only one. There's only three doctors in the state of Pennsylvania that can deal with his pump. She was one of them, at Penn.
So eventually, they left the door with me losing my mind still. Went outside. I called his doctor from Penn. And she drove from 18th and Lombard to Chester County Hospital because that's how urgent it was.
And even though she didn't have privileges, she walked right into his room with the hospitalist and basically told them, you could have killed him. From not listening to her, you could have killed him. So long story short, due to COVID, we weren't heard, and they almost killed him.
ROBERT EVANS: That was my story. That was my story.
KATE FIALKOWSKI: Bobby, thank you so much for sharing that and also your mom. I'm sure that must have been a terrifying event. But thank you for being courageous in your sharing that with the rest of us. Thank you.
[SIGHS] That's a tough situation. And we're all going to hear some tough conversations today. So again, please be mindful of yourself and some self-care. And if you need to step away, please feel free to do so. And I say the same thing to our panelists. If you need to turn your screen off for a minute and compose yourself, please feel free to do that. So next I'm going to ask Justin. Justin would you like to share your thoughts with us?
JUSTIN BROWN: How you doing again? My name is Justin Brown. I'm a program specialist, and I played the role as a active DSP through this hard time of COVID. I was just asked today to speak on my experiences. And I would first like before I talk on my experience, to thank all the people that stayed actively involved on the ongoing fight to regain our lives.
During COVID, I had to find the strength to keep on going, not knowing when I was going to be safe when I was out working. As the pandemic progressed, frequent updates and policies were changed and reviewed with staff. Even with some safety protocols and training, there was still always a fear for me that I would get infected and bring it home to my family.
This caused a great deal of anxiety and strain on the direct staff. At times, I felt some defeat because the people that I was-- the people that I was-- sorry. I felt some defeat. The people that we're supporting, they experienced their loss of freedom. And that made the job a little bit more harder because everybody started experiencing anxiety and depression.
And some, for us-- we don't sometimes, particularly when they're down, really, really down-- so over the lockdown, we didn't-- it was hard to explain why the stores are closed, why we can't go outside, why we can't go get ice cream, why we not doing the normal things that we usually do, like go to the zoo and go to day programs. So for me, it was just very, very hard to keep everybody active, healthy, and finding social distancing events to keep a normal life.
The most important challenge for me and the staff and the individual was keeping everybody and they friends and family together. So that was really the hardest part that I experienced. And it was sad. And it still bothers me to this day.
But as we integrate back into the community, we struggle. Like, I struggle. I struggle with trust. I struggle with being afraid to being locked back down. It's just one of those things. So I just hope that the community and the staff will follow the guidelines set by the city to wear masks or wash their hands to keep everybody safe, take they temperatures before entering anyone home, especially the ones that we support.
As a DSP and a supervisor at times, it's really, really hard to say, we can't go out, or, oh, this is a new update. So moving back into the community, we are still going to experience anxiety, stress around big crowds, loud noises, different smells because we've been in house for almost three years.
So building the physical strength, the stamina to go back to doing regular activities, like swimming, going out to see the ducks, feed the ducks. So it's just we don't-- we not sure. So me, again, as I struggle to support, I always just want to thank that people that support me to keep the job going. That's just a short little thing that my experiences and what I've been going through through the COVID times.
KATE FIALKOWSKI: I really appreciate you sharing that with everybody, Justin. And so it has been hard for everyone in the situation, including people who have been caregivers on the very front line. And everybody has had a lot of things taken away from them and a lot of things that they're sacrificing. Thank you so much for sharing. Thad, do you have some comments that you'd like to share as well?
THAD JACKMAN: I do. And thank you, and good morning, everybody. Again, my name is Thad Jackman. I'm with Barber. So I'm going to take a couple minutes this morning and try to keep it as brief to keep us on schedule as I can to talk about some examples of effects that COVID has had on both providers and recipients of service in the HCBS system. And a lot of the things I talk about are going to have-- or we believe are going to have-- some long-lasting effects in the system for years to come.
So as we begin to move away from a COVID response driven by mandate and policy and towards one of personal responsibility, I think it's important to discuss some of the challenges faced by our community, a population that was one of the most at-risk demographics during the COVID pandemic. Many of the individuals that we served have contributing factors related to their ability to follow safety protocols that were either recommended or mandated by government agencies or private businesses during the pandemic. A few of these factors were an inability to wear masks due to tactile sensitivity and an inability to remain socially distanced.
These challenges with following safety protocols had a couple different effects on our folks. I'm going to talk about two specifically. First and most obvious would be the effects on a person's health. Inability to mask and to distance put an already at-risk population at an even greater risk. Masking and distancing were our greatest tools to fight the pandemic pre-vaccine. The risk to individuals who could not use these tools affected not only themselves but their family members, housemates, and staff members, who were all put at increased risk of infection due to the inability to follow some of the protocols.
A second effect of these challenges would be the increased risk of social isolation for individuals who could not follow guidance that was required to re-enter society. As the world started learning how to reopen during the first years of the pandemic, many individuals with developmental disabilities had to remain in a state of isolation, directly related to the challenge of following safety protocols. In recent years, various entities within the system had worked to improve the level of inclusivity that people with intellectual disabilities have within their communities. This progress made by individuals, families, providers towards inclusion was inevitably pushed backwards by the challenges presented by COVID.
Tools and flexibilities were put in place during COVID such as telehealth, video monitoring, video visits with families and other remote-based tools, to assist with maintaining client health and safety. However, these tools could not replace the personal interaction one feels when they visit their doctor or when they sit down with a family member across from the table.
Discussion of the increased risk to the individuals we serve could not be complete without additional discussion of the direct care workforce that supports them. The increased risk discussed earlier for individuals with developmental disabilities had a clear effect on those supporting them. Early COVID infections hit congregate care settings and group homes especially hard.
Infections experienced by the workforce caused a great deal of stress to a staffing environment that was already under an extreme amount of pressure before the pandemic. This pressure caused providers across the Commonwealth to make creative and difficult staffing decisions for homes, homes that were at times staffed by supervisory or office staff, homes that were collapsed and combined to provide an adequate level of staffing.
These types of strategies caused the DSPs to work longer hours, change their work locations, and increased their overall workload. They had to accept that their lives outside of work now affected the clients they served at work. Staff were asked to modify the risk in their personal lives to lessen the risk to the individuals. This, in turn, led to an increased level of burnout for DSPs and supervisory level staff, causing many of them to leave the field. This exodus will have a lasting effect in the development of the next generation of leadership across all areas of our field.
I want to talk about a couple challenges to providers as well. So providers of supports for individuals with developmental disabilities existed in a heavily regulated environment prior to COVID. This environment did not and does not allow for a great deal of flexibility to respond to a public health emergency.
As a provider of services across the Commonwealth, our agency, for example, was required to not only navigate state and federal mandates during COVID but also the varied response from local health departments. Providers were required to build responses that met differing expectations depending on the location and the level of community spread in that local area. An example of this would be the vaccine mandate. And for note, I am not making any comment on the vaccine mandate. I just want to talk about it as a bit of a challenge for a provider across the entire Commonwealth.
So we all know the city of Philadelphia had put in place a vaccine mandate for direct care staff. While this mandate was being implemented in Philadelphia, our programs in the remaining part of the Commonwealth were planning for a federal vaccine mandate that had different requirements, which, after a great deal of planning, ended up being struck down anyway. A situation such as this causes a strain in resources, and it also limits a provider's ability to have a uniform response across the Commonwealth.
Another quick example would be masking guidance from different agencies such as FDA, CDC, OSHA. Different guidance at different times during the pandemic caused confusion amongst providers. Providers were spending a lot of resources having to research what guidance to follow in order to maintain compliance.
Situations such as these examples caused confusion for provider organizations. Resources that could have been spent on staffing and day-to-day management for the pandemic ended up being pulled into interpretation of policy and mandates in order to maintain compliance. Ongoing management of surges and infections, which will happen, will require a much more standardized response from support agencies. It is important to note that individuals' and provider organizations' recovery from the pandemic will likely occur over the course of years, not months.
It has truly been a trauma to the system and the people who are served by the system. Workforce, safety, and resource concerns will not simply come to an end at the time of the ending of the federal public health emergency. System flexibility and creativity will be required to build a better system post-pandemic. That's kind of my response or my comments.
KATE FIALKOWSKI: Thank you, Thad. Thank you so much. We have one more person. I know that we're running a little behind from some of our difficulties starting this morning. So I just want to say to the people who are in the next panel, thank you for your patience, and we are running a little bit behind.
Now, Marisol, I'm not saying that to say, please don't speak. But I just want to let everybody know who's on a schedule where we are in the schedule, OK? So thank you. Tell us a little bit about yourself, your situation, and then the community that you represent.
MARISOL RAMOS: Hi. I already talked before I have two young adults with special needs. My daughter born premature, and she had a tracheostomy. And she had lung disease. My son, who is 19 years old now, he has autism. And he suffer from allergies.
My husband is a cancer survivor. And he just had a heart attack three months ago. So he's really delicate, and he had to go to cardiac rehab. And myself, I had diabetes for the last 30 years.
So when you see my story about my family, my family is very compromised. Everybody have medical condition in our family. So when I heard about the COVID, was really frightening for us because us had to make sure my family's safe.
And also, really wasn't scared at first because us trying to find places for go and get the vaccine for our family, but was really difficult. The logistics was terrible. When you go to sites, the sites are too many people in the site.
So when you have a young adult with autism who had behavior issues, that was really bad because, really, I had to do the line couple time and I had to left because I cannot get the vaccine. So I have to wait time until I finally get a place with shorter line and I can do the vaccine for my kids.
I had to make a hard decision also because my son is in school age. So at first, because the school was by virtual and by Zoom, it's OK. But when the school start, I had to make the decision to let him at home because all my family being so fragile, I cannot expose my daughter and I cannot expose him, especially because he cannot understand he have to wear a mask.
You can try to explain to some people with autism or IED they have to wear a mask. Some understand. But in the case of my children, they don't understand that. And also, they have sensory issues. So that was really difficult for us.
Like Bobby say, he had a life before COVID. Every year, my family travel. Us travel. And this year, we try to travel with them. But again, people don't make exemption for people with disabilities. So the airport in Philadelphia lets us fly without masks, but the airline don't do it. So I had to cancel that special trip for my son. So that was a meltdown for him because he can not accept that.
So what's really bad, also my daughter need 24/7 care with nurses. So I have to let go nurses because they don't want to get the vaccine. And again, I cannot expose my family. Like, my family had the vaccine. Us had the vaccine. But bring somebody who don't have it, and bring the COVID to my home. So it's hard for us to do with a 24/7. But us had to make the decision that is the safe thing for our family.
About the community, I help families. I'm part of the Philadelphia Parents Support Group in Philadelphia. So my families had the same issues. They say when they go to get the vaccine, the sites are far away for the community. And some people cannot travel. They don't have transportation. Some are really scared to use the public transportation because they feel like they can get the COVIDs. But also for some illegal immigrants, they were scared they can report them. So they want to get their vaccine, but they are scared something can happen to them when they go and get the vaccine.
So this is some of that's told, like, also, it's too much information, but not in the right way. So they need more clear information for these family.
KATE FIALKOWSKI: Marisol, thank you so much. Thank you for sharing what you shared about your family and what a difficult situation it is to navigate all of this. So thank you for your remarks on that. And also, thank you for your remarks representing a community, a full community, that also has a different type of impact from this. So thank you.
Guys, I just want to be mindful that we are running a little bit behind time. And so what I'd like to do is I want to say to the attendees who are sitting in the audience, please feel free, use the chat. And then for the people who are in this panel, I'm going to say thank you very much for your comments. And I'm going to be moving you out of the panel and then bringing the next panel in, OK?
Thank you so much for what you shared today, for your personal remarks and helping us understand the disparate impacts that are happening among a number of different communities as we navigate the uncertainties of COVID. Thank you so much.
JUSTIN BROWN: Thank you.
KATE FIALKOWSKI: So thank you and hang on for the audience as I switch the panelists. Everybody who's currently in a panel, if you can turn off your video and make sure your microphones are off. And then people coming in on the medical doctor panel, if you guys can turn your videos on and turn your microphones on, I'll be bringing you in the room.
Dr. Abramoff, I'm bringing you in the room. Doctor Siasoco, I'm bringing you in the room. Dr. Houtrow, where are you? There you are. Bringing you into the room. I am going to stay in the room so that I can help out. But I'm going to shut off my screen. And Dr., Houtrow, I'm turning it over to you.
AMY HOUTROW: Hello, everyone. It is a pleasure to join you to moderate this session. My name is Amy Houtrow. I'm a pediatrician and person with disabilities. I'm a pale woman with brown hair, brown eyes, wearing teal glasses and a purple jacket.
I'm hosting the session with two amazing doctors. And I'd like to point to the agenda so you can read about their bios because they'll be talking about impacts of COVID for people with disabilities and long COVID. I'm actually going to hand it directly over to Vince so he can start so we can try to catch up a little bit on time.
VINCENT SIASOCO: Yes. Hi. Good morning, everybody. I apologize. My video states that it's still downloading. So I am a Filipino male with black hair. I wear glasses. I'm currently wearing a white shirt, red tie, and a blue jacket. So again, thank you for having me here. Kate, did you want to please bring up the PowerPoint?
KATE FIALKOWSKI: Sure. Will do. One moment, please. And I'm here to advance the slides.
VINCENT SIASOCO: Thank you. So I'm a family physician based in New York City. I would love to be with all of you in Philadelphia, but I understand that weather's coming towards our way also. So assistant professor department of family medicine at the Rose F. Kennedy Center Montefiore. I'm the medical director of the ADAPT Community Network.
So today, I'm going to be talking for about the next seven to eight minutes on variants, talking about the latest CDC vaccine recommendations as well as treatment recommendations, and just touch on long COVID, and hand it off to my colleague, Dr. Abramoff. The next slide, please. Oh. The slide before that.
KATE FIALKOWSKI: Apparently, I am slide challenged. Hold on. My typing and the slide movement are not in sync. Hold on. I'm so sorry. I'm so sorry. This is just a day full of--
VINCENT SIASOCO: No worries. So I'm going to just start talking.
KATE FIALKOWSKI: I'm just going to--
VINCENT SIASOCO: Yeah.
KATE FIALKOWSKI: Yeah, please.
VINCENT SIASOCO: So in regards to the variants, unfortunately we've all heard that term. Viruses like SARS-CoV-2 constantly change through mutation. And as a result of that, they produce new variants. So variants come and go. Unfortunately, some of them continue to stay with us. Thank you, Kate.
So right now, the most dominant variant that we all know of is the Omicron variant. It was first identified in Botswana and South Africa back on November 24, 2021. The World Health Organization during Omicron classified it as a variant of concern. A few days later, the United States designated Omicron also as a variant of concern. And the following day, on December 1, the first confirmed US case of Omicron was identified.
Unfortunately, with these variants, there's also subvariants. So you may hear on the news from time to time, BA.1, BA.2. Now there's BA.2.12.1. These are different types of subvariants of the Omicron variant. The good news is that we do have ways to prevent and treat COVID. Next slide, please.
So this is the most updated vaccine recommendations table on the CDC website as of last night. And as we're hearing on the news, this could change by tomorrow or in a few days, depending upon the CDC's guidance. But basically, everyone five years old and above are eligible for the primary series of the COVID vaccine. Everyone five years and older are eligible for the first booster after completing the primary series. The second booster is recommended for those individuals who are ages 50 years old and above and/or people who are moderately or severely immunocompromised.
Once everyone gets their boosters they're considered, based on the CDC guidance, as up-to-date. However, it's also been recommended that people ages 18 through 49 who have received the J&J vaccine as both primary dose and first booster can choose to get a second booster of either the Pfizer or Moderna. Just keep in mind only the Pfizer and Moderna vaccines can be used as a second booster. Next slide, please.
So again, the good news-- there is treatment options out there for COVID-19. There's two types of treatments-- antiviral treatments and monoclonal antibody treatments. Antiviral treatments basically target specific parts of the virus to stop it from multiplying in the body, helping to prevent severe illness and death. Monoclonal antibodies help immune systems recognize and respond more effectively to the virus.
So one of the antiviral recommended treatments is Paxlovid, which most of us have all heard about by now. It's used in adults and children 12 years and older. It's taken by mouth. And it should be started as soon as possible and within 50 days of when the symptoms start.
Unfortunately, you've been hearing about Paxlovid rebound. In very rare cases, individuals being treated with Paxlovid may have a recurrence of symptoms two to eight days later. So these are very rare events, but it shouldn't stop anyone from getting treated appropriately.
And again, you always want to communicate with your physician and your specialist when possible. Take into consideration what kind of conditions each of us have. For example, you want to take into consideration if you're an individual that has high cholesterol, taking certain medications for cholesterol, or on hormonal contraceptives, or on treatment for HIV. The medication may have to be adjusted, held, monitored.
And some medications are even contraindicated in giving Paxlovid. For example, if you have a seizure disorder, may be on, for example, Tegretol, or phenobarbital, or Dilantin. That's a contraindication to get Paxlovid. Or if you, unfortunately, are on some type of anti-psychotropic medication, such as Clozapine, that's also a contraindication.
Other antivirals-- Lagevrio is another antiviral treatment that can be used in adults 18 years and older. Again, should be started within five days. Monoclonal antibodies-- bebtelovimab is a monoclonal antibody that's given in a single IV injection and should be started within seven days. Remdesivir, Veklury, is again another antiviral treatment that can be given IV. And remdesivir can be given in an outpatient or in a hospital setting.
So these medications here that I identified are for those who are not hospitalized. You can take this at home or go to a center to get the IV treatment. Next slide, please.
So I'm just going to touch on this. My colleague, Doctor Abramoff, will talk more about it. So with long COVID, post-COVID conditions, unfortunately, people who have been infected with the virus that causes the virus can have long-term effects. And it can be considered a lack of return to the usual state of health. Commonly reported symptoms such as fatigue, cough, breathlessness, brain fog, headaches, sleep disturbance, anxiety are some common findings in those that are identified with having long COVID.
I think one of the challenges as a family physician working with individuals with intellectual and developmental disabilities is making sure that information is being presented to the provider to identify long COVID and rule out any other causes of these situations that are happening. Next slide, please.
So this is a nice checklist that was put out by the CDC just to give guidance. You always want to make sure before your appointment with your physician to make sure that you have everything ready, have the paperwork ready. Document anything that you may want to bring up to the doctor. Make sure you have any questions that you may want to jot down so you don't forget.
During the appointment, make sure that you give all the information as appropriately and as accurately as possible. And after the appointment, make sure that any follow-up appointments that the doctor may make that you have them, you're able to schedule them, and then you can follow up appropriately. Long COVID in this population can be a very challenging diagnosis, but with the right tools, communication, and coordination, we can address it. Next slide, please.
So real briefly, I'm from New York. I work at the Rose F. Kennedy Center. So we are very involved with COVID education and advocacy. So VaxFacts is a project that we're involved in throughout New York state working with individuals with special needs, also working with DSPs and families. So I just want to give a little snippet of this here. Next slide, please.
And that's it for me. Thank you so much for having me. And I apologize my video did not download so you couldn't see me. But again, thank you very much. At this point, I'll hand it off to my colleague, Dr. Abramoff.
AMY HOUTROW: Thank you so much for that. Dr. Abramoff will be pulling up his slide. There are some questions for you in the Q&A. So I'm hopeful you'll be able to type those in while Ben is presenting. And I'm handing it over to Ben now.
BEN ABRAMAOFF: And can you see my slides, Dr. Houtrow?
AMY HOUTROW: Yes, I can.
BEN ABRAMAOFF: Great. So my name is Ben Abramoff. I'm a physical medicine and rehabilitation doctor at University of Pennsylvania. I specialize in spinal cord injury medicine, and I've also founded and directed our post-COVID clinic here. I'm a white male. I have curly red hair. I have a shaggy beard. I'm wearing Black glasses and a blue shirt. I wish I had some glasses like Dr. Houtrow's, which are really amazing.
So to talk a little bit about long-COVID, I'm not going to play this clip, but if you search "60 Minutes long COVID," they have a really nice patient perspective on the long COVID experience that some go through. And so I'd encourage you if you're interested to hear more about long COVID from a patient's perspective to check out their video.
So what is long COVID? I think that's the basic question we're trying to answer. And one thing to note-- it's not necessarily one specific, clearly defined thing. And it comes in many different shapes and sizes. And there's also many different terminologies for it. One of the more popular ones that a lot of patients refer to themselves as is "long haulers," although many other terms are used, including long COVID, long-term COVID, post-acute COVID, post-COVID syndromes, just to name a few.
And there is a definition from the World Health Organization that's a working definition. Still learning about, but I think it gives some sense of the key components. So one is it follows COVID. Now, it doesn't necessarily have to be a confirmed case of COVID. Or it could be a home test or a PCR test. Usually lasts for several months. Some definitions stay one month. Others say three months.
Usually, the symptoms have to persist. And one of the main things to note is it's not explained by something else. We can't put it back to a pre-existing condition, or sleep apnea, or other conditions. We don't have a cause of it.
And there are some common symptoms, which I'll talk a little bit more about, including fatigue, shortness of breath, cognitive dysfunction-- often called brain fog for many of our patients. But there's a wide variety. Basically every system in the body can be affected, and it's usually to the point that it affects day-to-day life, day-to-day functioning.
And it may come after the acute illness, or it may persist. So you may be short of breath during COVID. And then following COVID, you continue to be short of breath. And usually, it's not constant. It fluctuates over time.
And I don't want you to look into too much detail on this slide, but it's basically an illustration just to show that every organ system of the body can be affected. And you can see that there's neurologic, musculoskeletal, gastrointestinal, systemic, cardiopulmonary symptoms. And it's for both people who have been hospitalized and people who have not even been in the hospital. They may have had a mild infection initially. So it really runs the gamut.
And I'm not going to reiterate this too much, but again, symptoms can start very severely at first and slowly resolve over time. Sometimes symptoms can get better at first, and then when you try to go back into your normal activities, whether that's sports, or school, or work, the symptoms can sometimes pick up. And sometimes the symptoms are actually worse after the acute infection than they were during the acute infection.
And just one thing to note to give you kind of a sense of the scale of this problem, it's estimated that anywhere between 10% and 30% of individuals with acute COVID do have those persistent symptoms. Now, that doesn't mean they're permanent, but they are there several months following infection. And just to show one example, this is from a dashboard that you can find online if you search AAPM&R and long COVID. And it can give you a sense in your specific county how many people have long COVID.
So I just did Allegheny County because I know that's where Dr. Houtrow is. And it's estimated that about 84,000 people may have had long COVID. So you can see it's quite a lot of people.
And so what are some of the risk factors? So these are still being established, but some early research suggests that it's more common in female individuals. Age-- usually it goes up with age up to age 70 and then decreases. Health-- so it tends to be more common, again, in older people with more comorbid conditions or other health problems. Some examples include hypertension, or high blood pressure; obesity; psychiatric conditions like depression, anxiety; poor overall general health; asthma; immunosuppression, just to name a few.
It's not a one-to-one correlation. But generally, the more sick you are initially, the more likely you are to have long COVID. It's likely that being vaccinated protects you from long COVID. Now, we're still in the early stages of understanding this. But if it protects you from getting COVID or prevents you from being as sick with COVID as you would be otherwise, then it almost certainly helps prevent long COVID. And there are some studies that support this.
Now, disability is another question in terms of a risk factor, something the individuals I treat with spinal cord injury often ask me about. And there's some evidence that having a disability puts you at risk of more severe effects of the initial COVID infection. Now, it's unclear if that means you're at higher risk of long COVID beyond this. But keep in mind there are some conditions that are associated with different physical and intellectual disabilities, including obesity, cardiac diseases, sleep apnea, depending on the condition that an individual has. And those can all put you at risk of long COVID.
And there's other things that can also make having long COVID more significant, and so the pandemic leading to loss of clinical and support services that were there prior to the pandemic, which some of the panelists before mentioned. Sometimes the use of telehealth can be a good and bad thing for individuals with disability, meaning that, in some cases, you can see patients that-- have appointments that you wouldn't be able to get to otherwise. But in other cases, you don't fully-- you can't fully evaluate the patient by seeing them virtually.
There's also the possibility of increased anxiety about health and long COVID issues because of heightened vulnerability, for example, if there's respiratory issues at baseline. And increased social isolation as a result of the pandemic can also play a role. And this even includes isolation from care providers, which there's been some research to support, and, in some cases, loss of caregiver supply, which was also mentioned by some of the panelists.
So what to do if you're concerned about long COVID? I think the most important thing if you've had COVID and you're concerned that you're having ongoing symptoms is to touch base with a trusted clinical provider, whether that's a primary care provider or a physiatrist in some cases, a physical medicine and rehabilitation doctor. Usually this comes after the resolution of the acute illness.
Sometimes an important thing to keep in mind is that having symptoms for a few weeks or a month after having a significant COVID infection is not unusual. So don't worry necessarily initially that you have long COVID. It takes time to really know. And I don't want to scare anybody, but it's important if you are having concerns to talk with your doctor. And if you've had symptoms that are consistent with COVID, you don't necessarily have to have a positive test.
So one other option if your clinical provider wants more resources or you feel like they're not answering your question is a post-COVID clinic. What we were seeing when we started our post-COVID clinic was that patients were having significant deficits in physical and cognitive function. And they were getting treated all across the health system without having a medical home. And I think what these clinics can provide is that home for your long COVID symptoms.
And so we have a diverse team of physiatrists. That's where we're homed. Other clinics are homed in infectious disease, or primary care, or internal medicine. And we work with a big team of people who have an interest in long COVID. So cardiologist, pulmonologist, neurologists, therapist, we all work together to try to get our patients the best resources.
And I'd also point you to a website called survivorcorps.com. They actually have a list of post-COVID clinics. And you can click on your state, and they'll have by different locations what are available. So again, I think in most cases it makes sense to start with your primary care provider, but know that these are out there as resources.
And now we'll talk a little bit about some treatments that you can think about for these different symptoms. So one thing to mention, during the first visit, you'll have a comprehensive evaluation where we look at all the different factors that can be contributing to these ongoing symptoms, whether that's your medical history, lab work and imaging, even your social and employment history, because we know having long-term effects of COVID that can be affected.
There's no universal treatment for long COVID symptoms. It has to really be tailored to what you're experiencing. And we always want to evaluate any contributing factors. And sometimes that means more testing, imaging. But usually, those things are normal. And so we're left with our clinical exam and really what the patient is reporting.
AMY HOUTROW: I think we need to move--
BEN ABRAMAOFF: And so I'm not going to go into these in detail just in the interest of time. I think it's important to know that I will be sharing these with the panelists. And I think these will be provided for you. So these are just some of the recommendations. So I'm just going to skip through these for now. And I'll get to the main points towards the end.
So one thing to mention, should we get the vaccine if I do have long COVID? And this is definitely recommended. There is some evidence, and this is a slide demonstrating that most people in this dark green and this teal color in the middle either stay unchanged or get better following the vaccine.
And the next thing I'll just mention briefly is according to the Department of Health and Human Services and the US Department of Justice long COVID now is considered a disability. And so that means if you have this and you need additional accommodations, whether from school or work, you're entitled to those. And I think it's the responsibility of us and your clinician to help get you established with those. So if you feel you need some or you're in worsened condition following having COVID, please, please keep this in mind.
A few last take-home points-- it is a real disease. It's not all in your head, which some patients with long COVID are told. It's a lot of different things involved that go under this long COVID umbrella. We need to have better understanding of the people who have long COVID, what symptoms they're facing, and how to treat it. We're still in the early stages.
There's a lot we don't know. Don't assume the worst. People do get better, even months following their acute COVID infection. There are self-management tools that are available to help you. That continuity of care is important. See your clinician if you're still having symptoms one to two months for sure after acute COVID infection.
And beware. There's a lot of misinformation out there in terms of different vitamins, minerals, supplements. They can interact with things that you're already taking. I think support groups are great. But again, it's better in a monitored situation so that you're not getting that false information. And there are people out there trying to make a profit off of this because it is so common.
I'm hopeful that this will go down as more people get vaccinated. But over a million Americans are going to have long COVID symptoms, most likely. And if you think about it, with 537 million cases worldwide, the chances-- even a small blip in the radar makes a big difference. And there is lots of ongoing research studies. Over a billion dollars have been supported by the government to fund long COVID studies.
So please feel free to contact us. Put your questions in the chat. I'll try to stay on for a few more minutes and answer them. And I thank you so much for having me. It's been really great to talk with all of you.
AMY HOUTROW: Well, thank you so much for that whirlwind. Both of our doctors deserve a round of applause. And so I'm going to give it to them here. And we're going to move on to our next session. I am delighted for people to put information in the chat, questions in the Q&A, and we'll try to get to them. Thank you so much.
KATE FIALKOWSKI: Thank you all for-- I know it's hard. You were trying to get through information in a really compressed time. And I'm going to ask both of you, if you send me a copy of your slides, then we'll make sure to communicate the slides as well. So I appreciate you doing that. Dr. Houtrow, thank you so much for helping us with this today and for moderating this panel and sponsoring the event. Thank you.
OK, I'm going to swap you guys out of the room. And I'm going to bring in the next panel of speakers into the room. So hang on just a second, everybody. I just want to let you know that most of the panelists are still around even though you don't see them on the screen. And so if you do have questions, put them in the Q&A, make comments in the chat, and please feel free to communicate, communicate, communicate.
OK, Barb, Dr. Nightingale, I'm bringing you into the room. Amy Nieves, bringing you into the room. Here you go. Sungin Yun, bringing you into the room. Wait a minute. I'm trying to bring you into the room. Ah.
Oh, you can you please turn your video on? I can't bring you in while your video is not on. That's what the problem is. Dr. Yun? Sungin, can you bring-- can you turn your video on?
SUNGIN YUN: Hello?
KATE FIALKOWSKI: Oh, there you are. I should be able to bring you in.
SUNGIN YUN: OK. Sorry. I'm going through computer issues today as well. Great.
KATE FIALKOWSKI: That's OK. It's one of those days. Amy, I'm going to turn this over to you.
AMY NIEVES: Thanks.
KATE FIALKOWSKI: So if you could help people and do a introduction for yourself, please. And thank you for sponsoring this event, also.
SUNGIN YUN: Thank you. And by the way, can I share the screen when I'm talking about few points? OK, great. Thank you. Let me share the screen.
KATE FIALKOWSKI: We're going to let Amy-- Amy, can you introduce people first so we know who's in?
AMY NIEVES: Yeah, absolutely.
SUNGIN YUN: [INAUDIBLE]
AMY NIEVES: Thank you so much, Kate. My name is Amy Nieves. I use she/her pronouns. I'm a fair-skinned female with blonde hair, leopard glasses, and a leopard top today. And it is my pleasure to cosponsor this event with our partners at the Institute on Disabilities at Temple University and with our other partners as well.
For this panel, I have the pleasure of introducing our two speakers to speak from the county's perspective of how long COVID and the efforts to elevate accessibility in their procedures and practices and how they are modeling ensuring that people with disabilities are included in those efforts from a county level. So I'm first going to introduce Dr. Barbara Nightingale, who, as the Deputy Director for Clinical Services at Allegheny County Health Department, oversees the department's immunizations, STD, HIV, and pulmonary clinics as well as pharmacy, dental, and emergency preparedness.
Dr. Nightingale came to Allegheny County Department of Health in 2022. Prior to joining the Department, she was the medical director for Latterman Family Health Center and associate program director for UPMC psychiatry and family medicine residency program. And so it is with great pleasure that we welcome Dr. Nightingale.
And also, our panel representing the Philadelphia Department of Health is Dr. Sungin Yun, who is the Clinical Project Manager in the Division of COVID Containment for the Philadelphia Department of Public Health. She graduated from the University of Florida in 2019 and was a local pharmacist here in Philadelphia through May of 2022. Miss Yun recently joined the Philadelphia Department of Public Health, where she hopes to help inform and educate individuals so that they can make the best possible choices and experiences for health and well-being.
And I will share just briefly that the Mayor's Office for People with Disabilities is a proud partner with the Philadelphia Department of Health, where we sponsor events like this to provide health forums related to COVID and the intersection of lived experience with disabilities. And so we provide guidance, and we have been helping to elevate the different programs that the Philadelphia Department of Health has been providing the disability community throughout the pandemic and beyond. And I've asked my colleague, Liam Dougherty, who is the functional needs coordinator for the Department of Health, to share some links in the chat for you all today to just highlight some of those programs during this panel.
So with that, I'm going to kick it off to Dr. Nightingale to share briefly with us some of the work that you are doing out in Allegheny County to not only include and prioritize the disability community but also efforts of the Department. Dr. Nightingale?
BARBARA NIGHTINGALE: OK, hopefully you can see my screen.
AMY NIEVES: Yes.
BARBARA NIGHTINGALE: Let me just make it bigger for myself here too so I can also see. All right. And I will try to keep this to 10 minutes, and I know we want to be on time here. So thanks for the introduction. I'll just go ahead since you already did that for me.
So I want to give a little bit of background on Allegheny County. So we are the Pittsburgh regional area. We have about 1.25 million residents. And just to highlight a bit about disabilities, people living with disabilities in our region, so we have around 12% overall in the population. And the highest number is in older folks. About 75-- sorry. About half of people 75 years and older have a disability. About 5% of children have a disability.
And I want to point out a couple things about types of disabilities in our area. I know this slide is a little bit busy, so I just want to point a couple things. So in general, the gray bars are the average US population, people living with disabilities. The blue is Pennsylvania. And then the yellow-orange color is Allegheny County.
So in Allegheny County, we have close to the average US people living with disabilities or a little bit higher percentages. Most significant are people with independent living disabilities or ambulatory or walking problems. And we also have about 5% of people with disabilities with self-care, cognitive or intellectual, vision, or hearing problems. So that's a little bit of background on the people in our region.
So I want to highlight-- and I know we could talk a full hour if we went back and talked about the full pandemic. So I'm going to fast forward to what we're currently doing for COVID. And ACHD is the Health Department, Allegheny County Health Department.
So we have a few different areas that I'm going to highlight. And this is definitely not all-inclusive, once again for the purposes of time. But we do have on our website-- and I'm happy to post that when we're done talking here. We have what are called monitoring dashboards. And these are updated daily or weekly, depending on the dashboard. And they give us a sense of how much COVID is in our region. And they allow us to take actions to direct efforts towards certain populations and when COVID is rising.
So we have examples where we look at the rates of testing and also cases, which are people that have been diagnosed with COVID. And we also look at rates of hospitalizations and deaths related to COVID. We also track wastewater. So this is a way that we can detect COVID very early in the population. That adds to our detection from testing. And we also monitor rates of vaccination. And this is particularly helpful because it lets us know which communities that we need to target to help increase vaccinations.
We also have areas that we're working on to help prevent and reduce the incidence of COVID and the problems related to COVID. So we do some case investigation that I'll talk about in just a minute. We also have ongoing vaccination efforts. And we're happy that people continue to come in. People coming in even for their first COVID shots on a weekly basis, which is really exciting. And we also have some advertising campaigns on social media and billboards and in newspapers and radios.
And then we have a lot of collaboration, so there was no way to list these all. But we have ongoing meetings with long-term care facilities, federally-qualified health centers, hospitals, and many, many community organizations to check in to find deficits or areas of need that we can continue to work on. And this was established very early during the pandemic.
So specifically for resources for people with disabilities, I'm going to highlight a couple of areas that highlight this. So we have vaccinations. We have a homebound program that we have the ability that people can call and request caregivers or individuals can request vaccinations in their home. We also do flu shots when it's flu season.
And we also have hosted many events. Those are less frequent now because the need has decreased. But at those events, we've had interpreters, including American Sign Language interpreters, assistance for people with hearing impairments, and foreign language interpreters for people who are non-English speaking in various communities that we've gone to.
We also have ongoing testing efforts. So we partner with the Curative lab. And we have sites that are mobile. So they have vans that move to different parts of the region. And we also have fixed locations at different community sites. There is no payment required, and you don't have to have an appointment. And we also have the ability to have drive-through for people that are unable to get out of their vehicle.
We also have home tests that we have worked with community organizations to distribute. And so that allows us to get testing into the hands of people that can't get to those mobile or fixed locations. And then we also have partnered with 211. So if you call 211 in our region, they can assist you with getting scheduled for testing or vaccination. And we also encourage people to report their home test results. It's not mandatory. But if you have any trouble doing that on the website, we can help with that on the 211 number.
We do have language lines in all of our clinical services. So anybody who does not speak English, we have the ability to connect immediately with that for assistance. And then I mentioned that I would discuss the case investigation. We don't do case investigation like we did in early COVID, where we were reaching out to every individual. But we do reach out to long-term care facilities and other congregate settings, so like group homes, personal care facilities. And we also recently reinstituted reaching out to adults who are 65 years and older. And the main reason for that is to be able to discuss treatment with them because we've noticed that a lot of people are not utilizing treatment when they may be eligible.
So I want to highlight a big thing that we can do for ourselves, as individuals and as caregivers for individuals living with disabilities. So sort of a catchy thing, but I know that it's not very inclusive, so I will have a caveat to the "mask" part of this. But we think about vax, mask, test, and treat. And I'll talk more about that in a minute.
I think importantly-- I know this will be a reiteration of many people today, but vaccination is very important. And even if you have had COVID, vaccinations still help prevent long-term problems from COVID. They reduce hospitalizations, deaths, and infections. And so vaccinations are very, very important. I'm going to give a little bit more detail on the next slide about this.
So there is one service that is available that I've put the website-- sorry, the email address and the phone number. And we can put that again in the chat, or you can get my slides after the presentation. The Disability Information and Access Line, which was developed by the Administration for Community Living and the CDC, is a number and email address that individuals and caregivers can contact. And they have huge ability to help folks both with finding locations for testing and vaccinations.
They can assist in making appointments. And they can also connect people to other services like transportation or services that may help individuals live independently at home. They also can help order the free home tests that are offered by the United States government. And they don't have a limitation on time. So they can spend as long as they need with individuals and caregivers.
And then masking. This is where I said this was a caveat. I understand many people with disabilities and otherwise cannot wear masks. Masks are still helpful when you're able to wear them. Avoiding crowds or indoor spaces that don't have good ventilation is a way to reduce the risk of COVID.
And then we can also look at support providers as a way to encourage them to help decrease the risk of COVID. And so things that we can encourage are to screen for COVID symptoms, to prevent or reduce exposures to COVID. We can also ask support providers to wear masks if the individual isn't able to wear a mask or even decrease the risk if both are wearing masks. And also, it's really important to keep with the basics of cleaning hands and cleaning surfaces.
And then lastly, preparation is a huge important. So thinking about planning if the backup-- planning for backup if that support provider is unable to come in. So thinking about your medications, groceries, things that that individual may need for several weeks if they don't have access to those.
And then lastly, I know earlier the treatment options were discussed. So I'm not going into detail about those. I want to just highlight the importance of calling the health care provider really quickly. There's only a few day turnaround time when many of these treatments are effective. So it's really important that as soon as you think you have COVID or have tested positive for COVID that you call your health care provider and talk about options.
And then to go backwards for just a minute as far as prevention is that there are treatments available if you've been exposed to COVID and don't have COVID yet. So please call your health care provider if you think that may be the case. And also, a good opportunity is when you are at a visit with your health care provider for other reasons. It's a good idea to bring up COVID so that you can pre-plan so that you don't have to make the decision quickly if you do get exposed or diagnosed with COVID. So thank you so much.
AMY NIEVES: Thank you so much, Dr. Nightingale. We really appreciate your presentation and being with us today. As we transition to the Philadelphia Department of Health's presentation, I just want to elevate for both of you a question that came in through the chat, if you would mind addressing it in the Q&A, is, "So what does the future hold for people who have disabilities and can't effectively mask, follow the guidance to maintain 6 feet apart?"
So I just wanted to highlight that question for the two of you. And you're both welcome to answer it in the type. And at this time, I'm going to turn it over to my colleague, Miss Sungin Yun-- Sungin Yun.
SUNGIN YUN: Thank you so much. Let me just share the screen. Great. OK, great. Thank you so much for inviting me to this meeting today. I am from Philadelphia Department of Public Health. In order for me to participate today, I had to work with Josh and also Betty [INAUDIBLE] And thank you.
So before I jump in to talk about Philadelphia, I want to talk about the pandemic data in a country level. As you can see, there is about 85 million total cases and about 1 million deaths relating to COVID-19. So COVID-19 is really a significant disease for everyone.
On top of that, United States has been making significant progress with the vaccination. As you can see, 221.9 million people are fully vaccinated. And it's really interesting because 16.7 million people have received the second booster dose.
Now, let's talk about the Philadelphia specific. It's really great that about 1.5 million individuals have received at least one dose. And people who are fully vaccinated in Philadelphia is about 1.2 million. That's a very significant number.
And as you can see here, when we are talking about pediatrics, you see that percent between 5 and 11. That's about 37.2%. So a lot of childrens are also vaccinated. And that's a really good thing as well. And the percent of 18 and older, 95%. That's very, very significant. So Philadelphia is doing pretty well in terms of vaccination.
And when we are talking about residents who have been fully vaccinated, that's about, for between five and 11, it's 30.2%. For people who are 12 and older, it's 76.9%. And when we are talking about 18 and older, it's about 77.7%.
And lastly, when we are talking about the booster dose, it's a little bit lower, unfortunately. That's something that we have to work on. Percent of 12 and older is 33.4%. And people who are 18 and older is about 35%.
And this is the overall case count right now. As you can see, I cannot [INAUDIBLE]. It's good news that you see that there was a huge Omicron surge back then, but then it went down. And then it's going down again. So that's good news, yeah.
Now, let's talk about the topics about disability in Philadelphia. In Philadelphia, roughly 16% of residents have a disability. And however, the Mayor's Office for People with Disabilities believe that disability data is more than just numbers. It tells the story of our city and its people. And this is like a little-- when you go to this website right here at the end, they tell you the index of everyone, like what percent of people like me have disability and what are some ethnicities, race and ethnicity, relating to that particular region.
Now, let's talk about what the Department is currently doing to address the pandemic. The first thing is the Division continues to monitor ongoing case rates, hospitalization, and rates of case rise to determine which least restrictive measures are needed to protect the public health. Second to this, masking is again strongly, strongly recommended, meaning in certain settings masks are required indoors and those with the vaccine exemptions are still required to test at least weekly for COVID-19 so we can protect the people who may be vulnerable.
There are no new policies, but people should continue to test themselves before and after events and avoid visiting at-risk friends and family members after attending events where there may be potential for exposure. And lastly, during the summer month when celebrations are in full swing, self-monitoring, masking, and testing when you feel sick, and following isolation and quarantine guidance are all ways that you can protect yourself, your family, and your community. If you want to read a little bit more in detail, definitely go to this website. It can provide you the great resource.
The next slide is about long COVID. I know we talked about it earlier, but I just wanted to briefly talk about it because this was from HHS. The long COVID can be a disability under ADA, Section 504 and Section 1557, if it substantially limit one or more major life activities.
I do not want to-- I do want to say here that not all the long COVID will result in-- it's going to get that disability under ADA definition. But certain ones that's really limiting the one or more major life activities can be classified as a disability under ADA act. And this was really explained in HHS, so yeah. And in order for you to determine that substantially limiting the life activities, I strongly suggest you to talk to your personal health care provider.
According to CDC, people with long COVID have a range of new or ongoing symptoms that can last weeks or months after they are infected with the virus that causes COVID-19 and that can worsen with the physical or mental activity, such as fatigue, headaches, shortness of breath, chest pain, depression, and anxiety. Those are very significant. And this is not exhaustive. And people also experience damage to multiple organs, including heart, lung, kidneys, and brain, which is very significant. So if you are suspecting it, I strongly suggest you to talk to the personal medical provider.
Now, let's talk about Department assuring accessibility of resources for people with disabilities. Divisions are regularly working with the Department of Behavioral Health and Intellectual Disability Services, Office of Aging, the Office of Labor, and Department of Law, and many other offices to address concerns and complaints related to the impact of COVID-19 policies and procedures on individuals with disabilities, from masking to ADA compliance for private employer and business. And if you have any concerns, please, please, please send us an email to COVIDpolicy@phila.gov for assistance.
Now, I wanted to talk about if, let's say, the person may have the disability and somehow contracted COVID-19, which is very unfortunate. Then please visit our website, phila.gov/COVID-19. If you reach out to COVID Containment Division, the representative may help to navigate the following, such as free food during the isolation and quarantine, get tested for COVID-19, access mental and behavioral health services, get help with housing and utilities, apply for unemployment and other benefits.
And on top of that, I want to add on to Dr. Nightingale's about homebound vaccinations. So in partnership with the Mayor's Commission with People with Disabilities, PDPH in May 2021 launched the homebound vaccination program. This program helps people who are homebound and their families to schedule in-home vaccination services through different vaccine providers. It is available for any individual who is homebound or anyone who would have difficulty being vaccinated at a clinic due to a disability.
If you are interested in setting up the vaccine appointment for yourself or a person who is homebound, please call 311 or that number, 215-685-5488, or fill out the form. I'll share the link in a minute. Once you have registered, you will be contacted by a provider to schedule an in-home vaccination visit. It may take about one to two weeks to get your appointment scheduled.
And I want to emphasize this-- know your rights. The ADA require the private business and employers to work with you on accommodations. Although Division cannot provide legal advice, we are here to assist in working through policies and providing referral whenever possible. And again, if you have any questions about the policy, please email COVIDpolicy@phila.gov. Thank you.
And then now lastly I want to talk about how to cope with stress. This is very important because if you are experiencing COVID-19 and also the disability at the same time, that can be a very stressful thing. So I wanted to close off with stress, how to cope with the stress on things.
So we wanted to say, take care of your body; take deep breaths, stretch, or meditate; try to eat healthy, well-balanced diet; exercise regularly and get plenty of sleep; avoid alcohol and drugs; and make time to unwind; and remind yourself strong feelings will fade; and try to do some other activities that you enjoy; take breaks-- watching, reading, or listening; and connect with others in a safe way.
And lastly, these are-- I decided to share this research from COVID Containment Department. We provide free at-home testing kits from these locations. These are the hours. Please come visit us. And we are more than happy to provide these resources. And again, please call 311 if you are interested in scheduling the vaccinations. Thank you.
AMY NIEVES: Thank you so much. I just want to thank both of our panelists for this great, robust amount of information. And thank you for your work and your leadership in this space to include people with disabilities, ensure that health equity is elevated and access to health care, and vaccinations, and policies are a human right of all people. So thank you so much, and I'll pass it back to Kate to welcome our final portion of the day. Thank you.
KATE FIALKOWSKI: Thank you so much. I'm going to bring you guys out of the room, if you could shut your cameras off, please, who were the people who were in the room. Thank you so much. And now, our final panel, if you can turn your cameras on, please, Jamie, Sally Jo, Michael, and I'll bring you into the spotlight.
Thank you all for being here. And I'm going to turn this over to Jamie Ray-Leonetti. Jamie?
JAMIE RAY-LEONETTI: Thank you so much, Kate. My name is Jamie Ray-Leonetti, and I'm the associate director of policy at the Institute on Disabilities. Thank you all for being here today. We've heard a lot of really interesting personal stories and facts about the impact of COVID and long COVID so far today. And now today we are-- now we are going to pivot to focus a bit on some of the policy implications that have come from COVID and long COVID.
So it's my privilege today to introduce to you our two guests. First, we have Michael Gamel-McCormick, who is the Disability Policy Director for the US Special Commission-- Committee, rather-- on Aging. And he works directly with our senator, Bob Casey. Thank you, Michael, for being here.
And also with us today is Reverend Sally Jo Snyder, who is with us from Western Pennsylvania. And we'll be talking about some of the grassroots work that she does around disability policy and COVID. So with that. Michael, I'm going to turn it over to you to kick us off.
MICHAEL GAMEL-MCCORMICK: Jamie, thanks so much for the introduction. And Reverend Snyder, glad to be part of the panel with you. I wanted to highlight just a couple of federal policy issues that COVID and the last two and a half years have brought to light. My boss has been working on quite a number of things not just from the direct health care, and the prevention, and the addressing of health needs, but also a lot of the ripple effects that have happened from this pandemic as well.
Let me get one of those issues out of the way right away that many, many people talk about, and that is looking at home- and community-based services and the direct service workforce. COVID unveiled how fragile and unstable that system is in terms of being able to provide home-based and community-based services to individuals. And my boss has worked for about two years on trying to stabilize that.
But far beyond that particular issue, there are a number of other things that have arisen. One is the fact that we have seen an extraordinary decrease in the number of applications for some of the core disability programs that the federal government runs. And that includes the two very big ones, the Supplemental Security Income program and the Social Security Disability Insurance program. Those programs saw almost a halving of the typical applications that take place during a typical year.
And one of the things that my boss has realized is that there is a whole set of individuals out there who have not been able to take advantage of those benefits. And we feel that there's a responsibility of the federal government to actually re-engage with those individuals and with those families and make sure they are aware that those programs exist, and that those programs are still operating, and that people can apply for those programs.
The physical closure of Social Security offices was very problematic for many people in terms of the application. And those offices have just recently, as of April, opened up again, at least partially, in many parts of the state. So we are working to try to get that information out to people, that they can apply, that they can participate in those programs, and they can apply to be a beneficiary of those programs.
We do not want to see people who are entitled to those programs going without both the cash support that those programs provide, but especially the eligibility for health care coverage, such as Medicaid coverage, in those programs. So that's one of the big things that my boss is working on right now and many other folks as well.
Another policy area that's been really important and necessitates strong community support is around employment. We saw something very different happen during the pandemic than what we saw during the Great Recession 12 years ago or 13 years ago. What happened in April and May and June of 2020 was we saw this steep decrease in disability employment happen.
But almost immediately, come August and moving through just this past May, we saw a rocketing up of employment of people with disabilities. People with disabilities moved into many of the essential workforce areas, things like gas stations and grocery stores and many of the services that needed to be fulfilled. People with disabilities really stepped up and moved into those settings. We now are seeing a disability employment rate that is higher than at any point since statistics have been collected.
But there's not always the support necessary to make sure that people can work those jobs and stay in those jobs. And unfortunately, that goes back to some of the waiver support and some of the Medicaid support that we have. So we really need to make sure that the supports are there so that people can continue to work. And I will also say that despite the fact that employment's at the highest rate that it's been since the start of collecting data, it is still less than half of what the general population's employment rate is.
We're also running into a number of barriers, unfortunately, for people to continue to work because we're running into some limitations, such as what's called substantial gainful activity, which limits the amount of money somebody can earn in a given month and still retain their federal disability benefits. So we're working to try to move that barrier out of the way so people can continue to work as well.
And then two things specifically about access to health care and medical services. One is-- and I was so happy to hear the tail end of Doctor Yun's comments about long COVID. Long COVID's a real thing. CDC just put out some significant information on it this month.
But we don't know what it looks like over the long term. We need to make sure that our federal programs are responsive to people who are experiencing persistent COVID and make sure that they're recognized in cases, as she said, where it substantially limits certain life activities. So the Social Security Administration and our other federal programs really need to be sensitive to those symptoms and to what people who are living with persistent COVID reactions are experiencing.
The other thing I think we've learned at the federal level is that we need a more nuanced response to pandemics and emergency situations like we've seen over the last two and a half years. Saying things like stay home, restrict your social interactions, make sure that you are reducing your exposure are really important messages, and we need to make sure that people hear them clearly. But we also need to provide some resources that allow for the social and emotional needs of people as well.
And I'll tell you just a really quick story. There's a young man who sits on a advisory council that we have who has an intellectual disability. Prior to the pandemic, he worked about 30 hours a week. Four or five months into the pandemic, with his job having been shut down, he really needed to interact with people to have that social back-and-forth that is part of what life is. And his mental health was dependent upon it.
And we have not at the federal level figured out how to make sure that those type of supports are in place. Those supports are as important as the acute medical supports that we need as well. And I think that we've learned from this pandemic that we have to have preparation ready to address those needs as well as the immediate medical needs of individuals during a public health emergency or a pandemic like we've been experiencing.
The final thing I'll say-- and this has been extraordinarily useful, and my boss tries to make this happen as often as he possibly can-- is that your engagement in the public policy process is essential. We heard from a lot of people who have disabilities themselves, a lot of service providers, a lot of academic experts about how we should respond. And we heard it in real time during the pandemic. What I would encourage you right now--
--and provide us with strategies and policies and what you think should be in place so that we are prepared for the next time that this happens. Senator Casey has been on the committee that is involved in pandemic responses for all of his senate career. So for 16 years now he's been doing this work. And one of his reactions early on was, why were we not better prepared to address the ongoing daily needs of individuals?
And so he's pretty dedicated to making that happen. You are the folks who have that information with that lived experience, that knowledge that will better inform us. So I would encourage you to reach out. I would encourage you maybe to form groups and then to send it to Representative Evans, or Representative Boyle, or Senator Casey's office, or Senator Toomey's office because it's extraordinarily valuable to have that preparation ahead of time.
And we now have a real-life experience for the last two and a half years. And we need to hear from every segment of the population about what is necessary so we can address things in the future. So let me stop there. Thank you for letting me have some time to talk with you all.
JAMIE RAY-LEONETTI: Michael, thank you so much for--
MICHAEL GAMEL-MCCORMICK: I'm sorry, Jamie, for going on so long there.
JAMIE RAY-LEONETTI: No. No need to apologize. Thank you so much for that great overview of all of the policy implications that are associated with our ongoing struggles with COVID. I especially want to thank you for the comments that you made around employment. And we do have a question which I'm going to throw to you because I know you have limited time with us today.
Someone in the Q&A was asking, "Was there an increase due to remote employment opportunities?" So do you think that or is there evidence that employment of people with disabilities increased because of the remote aspect of things?
MICHAEL GAMEL-MCCORMICK: Yeah, it's a great question, Jamie. And there was. My fear right now is that the employment sector is cleaving, and it's going one way or the other. One way is looking at these employment interaction strategies that we implemented during the pandemic that have been useful not just to people with disabilities but to everybody, frankly-- the flexibility to be able to work from home, the shifted hours, the resources that help you do things remotely. A lot of organizations are grabbing onto them.
There's also a set of organizations that are saying, you have to be back in person; you have to be doing this in person. And my fear is that that's going to, unfortunately, limit the number of people with disabilities who have been able to get employment during this time period.
My boss's message is really clear-- people with disabilities stepped up during-- have stepped up during this public health emergency. They filled essential jobs. And we need to make sure that the ways they can work continue to be offered even after when the public health emergency is finally concluded.
JAMIE RAY-LEONETTI: Thank you, Michael. And I just want to ask you to do one more thing, and that is toward the end of your remarks there it sounded like you were giving us a bit of a call to action in terms of maybe getting some important life experiences that we had to Senator Casey's office. And unfortunately, your audio broke up just a little bit--
MICHAEL GAMEL-MCCORMICK: Oh.
JAMIE RAY-LEONETTI: --during that call to action. So maybe if you could just repeat what it is that you need us to do so we can help you.
MICHAEL GAMEL-MCCORMICK: Sure. We know about some of the acute problems that happened early, particularly early on during the first six months, things like not having access to masks. But what we need is a lot of the lived experiences that people faced and how can we be prepared for them.
And what Senator Casey's been especially saying is there were mental health and social-emotional needs that really went unaddressed during the pandemic, the early days of the pandemic, and how can we create some programs, what would you all suggest to make sure that we get people connected to one another to be able to fulfill that need for interaction and support and even just to say that this is really hard and how do we support each other through this.
The young man that I was talking about who had been working really said to me at one point, this is how I-- this is what makes my life worth living is to do work and to interact with people. And we have to address that component of when we face pandemics as well as the medical and the health components as well. So ideas around that, Jamie, would be really appreciated.
JAMIE RAY-LEONETTI: Thank you so much, Michael. And I think that that is a perfect segue way into hearing some comments from your co-panelist, Sally Jo, since she really has her boots on the ground there in Western Pennsylvania. So Sally Jo, any reaction to what Michael has shared? Or would you like to share with us some of the things that you've been seeing in Western PA?
SALLY JO SNYDER: Absolutely. And Michael, thank you. It's a pleasure also to serve on this panel with you. And I'm a yinzer. I'm from Pittsburgh.
And I'm like a racehorse biting to get out on the track listening to all this for a couple of hours because I'm ordained United Methodist clergy, but I've spent over 30 years, basically, in answering my call is the social justice component of things and dealing with folks who often are not seen, nor noticed, nor heard, nor often in the make of policy. And we need to change that. And Michael, I appreciate what you said at the end.
I am the project coordinator for the Achieva, the Arc of Greater Pittsburgh and their initiative with the ARC of greater PA on addressing COVID-19 health disparities among persons with disabilities. Doesn't exactly roll off the tongue, but we know that health disparities run around and among persons with disabilities. This isn't new. They have been lived and experienced for forever, let's be honest. And the pandemic just really shone a big, bright light on this.
So I know the time, and I'm going to go as quick as I can to get this in. But if there are two overarching pieces of this that we're hearing-- and part of my work is going out, and meeting with folks, and listening to their stories and their experiences, and then taking those and working to find some solutions. The two overarching pieces would be Ariel and LEGOs.
And what I mean by that is if you're a Little Mermaid fan, Ariel's lesson was get out where the people are. That needs to happen. It needed to happen in terms of the vaccine. I know here in Pittsburgh, the first public vaccine they ran was in Monroeville, which is a heck of a long way from downtown Pittsburgh. It was an issue with public transportation. You'd have had to take a couple of buses to get there.
If you were a person with a disability and got there, God bless you, because the situation was not accessible. So you got there. Phew. But then when you went in to get the vaccine, the exit-- and everyone was obviously very tense on keeping the distance and making sure follow the rules. But the exit was down steps. Oops.
And it was just that part of the overarching thing with this too, which would be the LEGOs piece of making connections. There are a lot of people out there that are not connected to any sort of community services. They just hang out there on the fringe.
And the piece of this that really pains me that needs to change-- not just COVID now as we lived through it and long COVID-- but whatever comes down the road next is the overarching piece when you hear person after person after person in the disability community say that they felt-- this is an ouch-- they felt expendable. Ooh. They felt like an afterthought. No one saw, nor heard, nor cared-- example of the vaccine rollout number one.
Persons with visual impairments-- the test. Everyone was all excited about, hey, you can get your take-home test, but didn't realize that if you're a person with a visual impairment, no, you can't. What are you supposed to do with that piece?
The deal of social distancing-- if you're a person with a visual impairment, you're going to rely on someone to get you to where you need to be. How you do that 6 feet apart? We got to have a rope? I mean, how do you deal with that?
The other piece too of when persons with visual impairment signing up for the vaccine-- and there was a rush. Got to sign up to get it. Oops. We forgot that the screen reader wasn't working nor installed. I mean, there's just issue after issue where I can understand why a person with a disability would-- and I'm a family member, by the way-- would feel expendable, an afterthought, excluded, what have you.
The other piece too would be the whole issue of transportation was major, as I've highlighted. But also understanding the role that poverty plays in all of this too was significant. Like, in Pittsburgh, there was a real big, major news story when there was going to be a food drop-off and go out and pick up food in Duquesne, which is a lower economic area here in our city. That's tremendous.
And then I was like, wait a minute, when persons with disabilities were saying to me, that was great, but we don't have a car. And how are we going to get there? And again, oops, didn't think of that. So thankfully, folks that had connections, people were coming in to make food deliveries and to deliver food to them.
The last piece-- and I know it's at the end, and I don't have the ball nor any timeouts. I get that. But the last key two points that I would make is, one, in terms of attendant care, that was critical because there was the mindset of warm and vertical. Hey, we have a body. We'll stick you in.
And we need to move from warm and vertical to trained and trusted. I beg you. There needs to be work from just warm and vertical to trained and trusted. Has to happen.
And lastly, we want to talk about policy. Pleading, can we please involve persons with disabilities on every level-- county health departments-- every single level to share of their experiences, their needs? Involve them, and then let's talk seriously about working to make sure persons with disabilities are involved, and included, and working to be part of the solution now and moving forward. So thank you. Sorry, interpreter. I know I put you through a workout there, but I had time. So great.
JAMIE RAY-LEONETTI: Sally Jo, I couldn't have said that last piece better myself. I think it goes to what my friend and Michael's friend and Senator Casey's friend Liz Weintraub always says-- "Nothing about us without us." But I want to thank you for putting the human face on those policy issues, Sally Jo. And I also want to thank Michael again for being with us today to highlight some of those policy issues.
I know Michael has a hard stop at 1 o'clock. And we really appreciate his time. But as we wrap up here today, I just want to say thank you to both of you. And I'll kick it back to Kate.
KATE FIALKOWSKI: Helps if I remember to turn my microphone back on. Wow. I don't know about everybody else, but I feel like I got a workout this morning. So a couple of things just by way of wrapping up-- first of all, Sally Jo, there's somebody in the chat that would like your contact details. So if you'd like to follow up with them individually, you can.
And I want to say thank you to Jamie. And in absentia, thanks, of course, to Michael for being here and giving us some policy pieces to chew on. Thank you to Sally Jo. And I want to say thank you to all of the sponsors for this event. We wanted to make sure that this was more statewide representative and that we have information representing both sides of the state of Pennsylvania so that we could begin talking together as we're digging out of this.
I hope that everyone appreciated the contact that we brought to you and that there is some really important information in here on long COVID especially, which it is real. And finally, also in the chat I've provided the link to the feedback form. We really welcome your feedback. We need your feedback. And it helps us bring excellent programming to you in the future as well.
So thank you all. Thank you, Dr. Amy Houtrow, Dr. Ben Abramoff, Dr. Vincent Siasoco. Thank you, Amy Nieves. Thank you, Barbara Nightingale. Thank you, Sungin Yun. Who am I missing? Thanks to the beginning panel-- Robert Evans, Thad Jackman, Justin Brown, and Marisol Ramos. Obviously, thank you, Sally Jo and Jamie.
And I think I got everybody. We appreciate all of the people who attended today. And we look forward to your feedback. Have a wonderful afternoon, everyone. Thanks so much.
Oh, thanks to our interpreters and our CART as well. I had to see the screen. Thank you. Thank you. I'm stopping the recording.
Sally Gould-Taylor, PhD. Executive Director, Institute on Disabilities, Temple University (UCEDD). Associate Research Professor, Department of Teaching and Learning, College of Education and Human Development
Justin Brown, Program Specialist, Barber National Institute.
Mr. Brown has 13 years of experience including experience as a Direct Support Professional, House Manager, and as a Program Specialist. He has had experience helping support folks with a wide range of abilities and support needs including individuals with complex medical needs.
Robert Evans, Advocate: Medical Experiences.
Mr. Evans is a Fun. Cool. Young Man. Who speaks with a talking device. From Southeastern PA/Chester County. From Downingtown originally and more recently from West Grove. Mr. Evans wants to teach medical professionals about disability. Patients with disabilities need better care.
Thad Jackman, Director Of Southeast Regional Programs, Barber National Institute.
Mr. Jackman has twenty-three years of experience in the intellectual disability service field in positions ranging from Direct Support Professional to Regional Director. Has supported individuals representing a wide range of areas across the Commonwealth including the following counties: Erie, Allegheny, Washington, Greene, Butler, Beaver and currently serving as Director of Barber’s Programs in Philadelphia, Bucks and Montgomery County.
Marisol Ramos, Family Member.
Ms. Ramos works at Vision for Equality as the Latino Services Coordinator. She is also the representative for the Latino Support Group from The Philadelphia Parent Support Groups. Ms. Ramos has a daughter and a son that have both intellectual disabilities and autism. She loves to work helping the Latino community and other families in need.
Moderator: Kate Fialkowski, Assoc. Director, Academic Programs, Institute on Disabilities, Temple University, Adjunct Professor, Disability Studies, College of Education and Human Development.
Benjamin Abramoff, MD, MS.
Dr. Abramoff is the Assistant Professor of Clinical Physical Medicine and Rehabilitation at the Perelman School of Medicine, University of Pennsylvania. Dr Abramoff also holds the following positions including: Director of Seating and Positioning Clinic in the Department of Physical Medicine and Rehabilitation, Director of Spinal Cord Injury Services at Penn Medicine Rittenhouse, Founder and Director of Transitional and Adult Spina Bifida Clinic in the Department of Physical Medicine and Rehabilitation, Co-Founder and Co-Director of COVID Recovery Clinic in the Department of Physical Medicine and Rehabilitation, Lead Rehabilitation Clinician at the Penn Nerve Center and a Member of the Skin Integrity Commitee at the Penn Institute of Rehabilitation Medicine. Dr. Abramoff holds a BS (Life Science Communication) from Cornell University (2008), an MS (Health and Rehabilitation with a Specialization in Health Education) from Ohio State University School of Health and Rehabilitative Services (2013), and an MD (Medicine) from Ohio State University College of Medicine (2013).
Vincent Siasoco, MD, MBA.
Dr Vincent Siasoco is a Board-certified Family Physician with a focus on caring for those with intellectual and developmental disabilities. He is an Assistant Professor in the Department of Family and Social Medicine and Department of Pediatrics at the Albert Einstein College of Medicine and Director of Primary Care at the Rose F. Kennedy Children's Evaluation and Rehabilitation Center at Montefiore Medical Center. He is the Medical Director at ADAPT Community Network (formerly known as United Cerebral Palsy of New York City). He is a Board member of the American Academy of Developmental Medicine and Dentistry. He's a Clinical Director for Special Olympics and Chair of the Special Olympics New York Health Advisory Council. He is the Co-Chair of the Cerebral Palsy Associations of NYS Medical Director's Council and Co-Chair of their annual CP Associations of NYS MD Council Clinical Conference.
Moderator: Amy Houtrow, MD, PhD, MPH.
Dr Houtrow holds the following positions: Professor of PM&R and Pediatrics.Endowed Chair for Pediatric Rehabilitation Medicine. Vice Chair: Pediatric Rehabilitation Medicine. Vice Chair: Quality. Professor of Physical Medicine and Director, Leadership Education in Neurodevelopmental Disabilities, Department of Physical Medicine & Rehabilitation, University of Pittsburgh School of Medicine. Chief: Pediatric Rehabilitation Medicine, UPMC, Children's Hospital of Pittsburgh.Dr. Houtrow’s clinical work focuses on optimizing health and functioning outcomes for children with disabilities. Dr. Houtrow’s research focuses on recognizing the impact raising children with disabilities has on families, health care inequities, childhood disability trends and outcomes research for children with disabilities. Presently, her research is utilizing the National Survey of Children’s Health to evaluate the emotional and physical health of caregivers of children with special care needs and to compare the reporting of child’s health and development concerns between mothers and fathers. Dr. Houtrow is also evaluating food and housing insecurity disparities.
Barbara Nightingale, MD.
As the Deputy Director for Clinical Services at the Allegheny County Health Department, Dr Nightingale oversees the department’s immunization, STD/HIV and pulmonary clinics, as well as pharmacy, dental and emergency preparedness. Dr. Nightingale came to the Allegheny County Health Department in 2022. Prior to joining the Health Department, she was the Medical Director of Latterman Family Health Center and Associate Program Director for the UPMC Psychiatry and Family Medicine Residency Program. Originally from Rhode Island, she moved to Pittsburgh to attend Carnegie Mellon University for an undergraduate degree in Chemical and Biomedical Engineering. She briefly worked at the National Institute on Drug Abuse in Baltimore before returning to the area to complete a Master’s in Biology at Duquesne University. She attended medical school in Philadelphia at Drexel University College of Medicine. After graduating from the UPMC-McKeesport family medicine and psychiatry residency program, she joined the faculty as both a psychiatrist and family physician in 2015.
Sungin Yun. Pharm.D., Division of Covid Containment, Philadelphia Department of Public Health.
Ms Yun is the Clinical Project Manager, Division of Covid Containment, Philadelphia Department of Public Health. She graduated from the University of Florida in 2019 and was a local pharmacist in Philadelphia, PA through May 2022. Ms. Yun recently joined the Philadelphia Department of Public Health where she hopes to help inform and educate individuals so that they can make the best possible choices and experience health and wellbeing.
Moderator: Amy Nieves, Executive Director. Mayor's Office for People with Disabilities.
Michael Gamel-McCormick, PhD, Disability Policy Director for US Senator Casey of Pennsylvania.
In addition to his current role, Dr. Gamel-McCormick held a similar position in the office of Senator Tom Harkin. He was also Senator Harkin's senior education staffer. Dr. Gamel-McCormick began his career as an early childhood education teacher, teaching in inclusive settings. For 15 years, he was a professor and dean at the University of Delaware as well as the director of the University's Center for Disabilities Studies.
Sally Jo Snyder, Reverend, United Methodist Church and Project Coordinator Achieva, The Arc Greater Pittsburgh.
Sally Jo serves at the Project Coordinator for the stateside initiative to address health disparities further evidenced by the COVID-19 pandemic. For the last 20 years Snyder has been answering and living her call to social justice by working on health inequities which impact persons with disabilities, and individuals with mental health diagnoses. Snyder has also been working on inclusion for the LGBTQ+ community; racial and economic justice; public education reform; children's health and well-being; respect; and community connection. For 30 years Sally Jo has been a Reverend in the United Methodist Church.
Moderator: Jamie Ray-Leonetti, Associate Director of Policy, Institute on Disabilities at Temple University College of Education and Human Development.
These resources can be used to help improve outcomes for individuals with disabilities as we all respond to COVID-19.
- Communications for All Picture Board and Emergency Communication For All information video (open captioned)
For use as an aid in emergency and non-medical communications, these tools should not replace a professional interpreter.
- Tip Sheet: Promoting Effective Communications and Physical Accessibility
Agencies, organizations, and facilities should ensure there is appropriate access to services and supports.
- The Inclusive Health Equity Collaborative
A statewide program working to address COVID-19-related health disparities and advance health equity by expanding support and services for Pennsylvanians.
- COVID VaxFactsDDNY
This New York State project uses science-based information about COVID-19 to increase access to and understanding of COVID-19 among persons with intellectual and developmental disabilities (IDD) and their families.
Resources Shared During the Event: Links
- Patient Tips: Healthcare Provider Appointments for Post-COVID Conditions
- 60 Minutes Video on Long COVID
- PASC Dashboard: Post-Acute Sequelae of SARS-CoV-2 Infections (PASC) Estimates and Insights
- Post-COVID Care Centers (PCCC)
- Accessibility at Community Clinics: Know Before You Go (Philadelphia)
- Communication board used at Philadelphia Department of Public Health vaccine clinics, partnered with the Institute on Disabilities (see "Communication Aids")
- Philadelphia's In-Home Vaccine Program (follow link or call 311)
- How to protect yourself from COVID-19 during party season
- City of Philadelphia COVID-19 services and information
- Bloomberg: Long Covid Is Showing Up in the Employment Data
Last update: 7-1-2022