Independent Perspective In-Depth #12

Guest:  Brianna Gower and Melanie Hecker

Topic:  Young Leaders and Advocates Network

Duration:  28.15

Published:  June 20, 2021

Host:  Welcome to Independent Perspective In-Depth, a program presented in the public interest by Western New York Independent Living (WNYIL) family of agencies, courtesy of the Niagara Frontier Radio Reading Service (NFRRS). Using this long format, we'll be exploring the broader issues affecting the community of people with disabilities in discussions with knowledgeable individuals from a variety of organizations and backgrounds. We're delighted to have as our guests for today, Brianna Gower, the Director and Melanie Hecker, a Council Member of the Young Leaders and Advocates Network or YLAN. Jillian Moss Smith is on vacation this week. I'm your host Ernest Churchwell. Welcome to the program Brianna and Melanie.

Guest:  Thank you for having us. Yes, thank you.

Host:  It's our pleasure. Although relatively recent among the disability rights organization I believe the YLAN is getting something of a reputation already. Chances are that many of those listening are not familiar with YLAN. When was it formed, what area does it cover, and what are its goals?

Guest:  So, the YLAN is the newest member of WNYIL’s family of agencies. And we are a statewide network that is run for and by young people with disabilities. So that includes young people ages 14 to 30, youth and young adults who self-identify as having a disability. And we formed last year in September. So, we've been going pretty strong and although new, have hit the ground running.

Host:  If somebody is interested in your activities and would like to participate in YLAN as a member, you've already mentioned, ages as criteria. Are there any other qualifications such as type of disability?

Guest:  So, this network is really built for cross disability, cross system experience. So whatever background disability you have that, that fact of identifying at like as a young person with a disability is what makes you welcome into this network.

Host:  Very fine. Brianna since you are the Director and you oversee the various YLAN outreaches and activities, I have to ask what experience has prepared you for this demanding role?

Guest:  It's a good question. So, a lot of it really comes down to my own personal experience coming up. So starting out as a self-advocate learning how to advocate for myself, turned into volunteering for an organization that was run for and by peers, and from there I worked my way through various peer leadership roles, and through that gaining a lot of different experience, and in the past I've served as a director for another statewide network, coordinated events, did a lot of technical assistance and advocacy, and that's something that I'm really excited to bring to the table with this new network that we have going on over here. And the focus that we have on young people with disabilities statewide.

Host:  Sounds like we're very fortunate to be able to get someone of your background for this role. Turning to Melanie, you're a member of the YLAN Council, and there is a particular reason that we asked you to be on the show today but first what attracted you to this organization?

Guest:  So, I was about 18 years old when I first discovered the Disability Rights youth movement. What had happened was, I'm autistic, and I had lived my entire childhood being told that I was broken. That the way I came out of the womb wasn't right. And that if I wanted anyone to love me, I had to pretend that I was somebody else. And around the time I just started college, my school to work transition counselor gave me an application for a group very similar to this one for a Statewide Youth Leadership Forum. And when I went to this event, I was told for the very first time that there is nothing wrong with me, that I'm fine the way I am, and the problem is with society, a society that won't accept or accommodate disabled people, not with me. Hearing that really turned me into a different person overnight. And I decided that I would do anything for this movement that turned me from somebody who was self-conscious and miserable to somebody who was empowered and confident. So, when Brianna reached out to me about the formation of YLAN and wanting me to serve on the Council of course I said yes.

Host:  Well it sounds to me as though you're an ideal person to work with the independent living movement because that sort of acknowledgement and independence is exactly what it's all about. But as we hit it a moment ago with the YLAN has made an important contribution to the health of the entire community by compiling the Easy Read Guide to COVID-19 Vaccination in New York State and Melanie, you were one of the principal authors. What led YLAN to create this vital document?

Guest:  So, I came up with the idea for this document shortly after the COVID-19 vaccine became available to people under age 65 with comorbidities. What was going on at the time was there were a lot of people who had a lot of questions about the vaccine. How they obtain the vaccine? What channels do they need to go through? What kind of information do they need to give the person to obtain an appointment? What's going to happen when I have the appointment? And since I serve as a lot of an information clearing house for people in the local area with disabilities who are trying to obtain services, a lot of people came to me with all of these questions, and I thought that the best way to help and answer everyone would be to write a guide about it.

Host:  Well, I think you had an excellent impulse there especially when I see the finished product. And we will cover a lot of those points individually shortly, but I should say that while the booklet is in decent sized print with many colorful graphics, it is 17 pages long. So rather than reading it cover to cover, we'll just ask you to summarize each of these points. First, in a few words, just what is the COVID vaccine?

Guest:  So, the COVID vaccine is a two-dose shot, or one dose in the case of the Johnson & Johnson vaccine that allows your body to build resistance to the virus. So that if you wind up coming into contact with the COVID-19 virus. Your body is better prepared to fight it, because what a vaccine does is, it exposes people to a weakened form of the disease or in the case of the COVID-19 vaccine, a tiny part of the virus so that the body knows how to fight it when the real thing comes along.

Host:  Great and since unlike older types of vaccines, it's not an actual entire weakened virus, there's no possibility of you getting the actual disease from the vaccine as I understand it.

Guest:  No, you cannot get COVID-19 from the COVID-19 vaccine. What the COVID-19 vaccine consists of is just a tiny part of the virus. Tiny enough so that the body is able to recognize it. But since the full virus isn't present you cannot get sick from it.

Host:  Great. Well, it sounds like there's an awful lot of good things going for the vaccine, the obvious question is, what do people have to do to get?

Guest:  So, there are three main ways that people can get the COVID-19 vaccine. First, you can go to the New York State Department of Health website and schedule an appointment through the Department of Health. You can do this either on their website or by calling the COVID-19 hotline phone number. If you do either of these, you will be given a list of locations where you can sign up for your vaccine. The second way is through your county, most counties on their websites have signup forms to notify you when a vaccine clinic becomes available. And the third way is there are some disability organizations that are holding special clinics just for people with disabilities. So, anybody interested in any of those clinics can contact their service coordinator.

Host:  In addition to the government run sites I believe now they're even some pharmacies and whatnot, which are offering it?

Guest:  Oh yes. Initially pharmacies would only give the vaccine to people aged 65 and older. But now that the vaccine has become more available, anyone can go to their local pharmacy for a vaccine.

Host:  That's great. For the benefit of our listeners, we'd like to mention that if anyone has just joined our program, you're listening to Independent Perspective In-Depth, a program presented in the public interest by WNYIL. Our guests are Brianna Gower, Director and Melanie Hecker, a Council Member of the YLAN. Now we’ll continue exploring the exciting work of this organization in fighting the Coronavirus pandemic. Regardless of where you get the COVID-19 vaccine generally you need to schedule an appointment and have some personal information available; how does one do that?

Guest:  So, to schedule an appointment, if it is through the state, there are two ways, as I mentioned earlier, either by calling the state COVID-19 vaccination hotline or the Department of Health website. And there are a few things that you're going to need to have ready to schedule an appointment with the State Department of Health. You're going to need your name, your birth date, your address, and the location of the clinic which you would like to receive your vaccine at. You also need to provide your health insurance information. However, this is just for information sake, you will not be charged for the COVID-19 vaccine.

Host:  Alright. Well you just answered a question that I had coming up further on, but that's fine as long as the information gets out. And we've noticed, you may have covered this already also, I'm not sure people can now sign up for the shot by phone or through a computer or other electronic devices. Is there different things that need to be done in those different avenues?

Guest:  So, you need the same types of information both over the phone and on the website. The main difference is that over the phone is a bit easier, because people on the phone line can receive appointments before they show up on the website. But otherwise there is very little difference between scheduling your appointment over the phone or on the website.

Just to add to that, I think, Melanie you scheduled yours over the phone, correct?

Yes, so I initially tried to schedule over the website. And my initial appointment was for Syracuse, even though I live in Albany. But here's the thing if you get an appointment somewhere else or a long time away and you want it to be closer or sooner you can always reschedule, so when I heard from family that appointments had become available in Albany, I called over the phone to reschedule mine.

And then when I scheduled my appointment I actually did it through the website, so I think that when it comes down to figuring out how you sign up for the vaccine it's really what's going to help you the most. So, for Melanie as she talked about it was much easier for her to do over the phone. And for me personally, even though the website was a bit complicated with doing it online was more helpful for me. Just when it comes down to anxieties and phone conversations, I may be a director, but my anxiety is still real. I found it much easier to figure things out online and be able to look at things as I was processing the information. So, figuring out what works best for you is going to be helpful, as well as you know, leaning on supports or even getting support from your local independent living center to navigate the process.

Also do know that if you make your appointment over the phone you will need to listen to a very lengthy legal statement. So, if you would have trouble sitting through that you may be better off using the website.

Host:  Alright well, as I myself used the online site to sign up for my vaccines back when they first became available to under 75 years old and couldn’t get an appointment for a couple of months thereafter, things are certainly coming much faster nowadays. Going back to the guide, we noticed that, just like anytime you go to a new doctor or new clinic or whatnot, you sometimes have to jump through a few hoops so to speak, to get things done and you need to have a little persistence, as you just alluded to with the phone calls. Can you offer any particular tips about dealing with these aspects?

Guest:  Certainly, so first of all, if you have trouble obtaining a vaccine appointment, be persistent, try, try and try again. If you're using the website, keep refreshing the page until something becomes available. The next piece of advice I would have is that if your preferred location, if your closest location says that there are no appointments available, click anyway because appointments get added to the website so quickly that in the two seconds that it takes you to click schedule appointment, some might have become available. And I've actually talked to a number of people who that has happened to. And the third piece of advice I would have that I've mentioned before is that if the only appointments available are for places that are far away from where you live, in some cases you can schedule the appointment. Like for instance, I live in Albany, but when I first tried to schedule my appointment the only appointments available were for Syracuse. But if you schedule an appointment, far away from your home, you need to make sure that you have reliable transportation to that appointment.

Host:  Very good.

Guest:  Yes. To add to that as well, I think, making sure you have all the information you need in advance to schedule your appointment and go through that process will be incredibly helpful. So, taking the time to look at what is needed from you as you're going through registration, as you're working things out with your doctor or whatever supports that you have. Being able to pull that information together is going to be very helpful so that you don't get stuck at one point, and realize, oh no, I need this document that I don't have

Host:  Although I know that qualifications are changing all the time, when I was doing it, I had to fill out a prequestionnaire and show evidence that I had done so. And plus, I was asked to bring certain documents with me as you just alluded to. Are they still asking for driver's license, proof of insurance and things of that nature? And do you still have to fill out that prequestionnaire.

Guest:  Yes, so a lot of sites, especially the government run ones will still need your ID, your insurance information and the proof that you've completed the questionnaire. And even though this may not be the case anymore, at some non-government run places such as pharmacies, it's important to still bring your ID and your insurance information just in case. Even if the place that you're signing up for is not directly asking for it, still bring it just in case.

Host:  And as you said before, no matter what your insurance is there's no charge for the vaccination. The guide suggested that there are other things to keep in mind as you go through this process, which can make things smoother at the appointment. Could you mention a couple?

Guest:  Yeah, so make sure you arrive a little early, but not too early. Most sites will give you instructions on how early you should arrive for your appointment. This will give you time to find a location to park to get settled in and situated and also have your information ready for you when you're walking in. So, whether it's your ID, your insurance card, whatever you need to have with you as you're going in, having that prepared in advance. And then Melanie, I'm not sure if you have stuff you'd like to add?

So, I would recommend that unless you're a person with a disability who needs a PCA to accompany them to the appointment, you are not allowed to bring other people with you to your appointment. However, I recommend traveling with someone and having them sit in the car or wait outside. In case you wind up having a bad reaction to the vaccine. And after your appointment they will keep you for about 15 minutes just to make sure that you do not have any reactions.

Host:  And for the benefit of people that aren't regularly involved in health issues, we should mention that PCA is Personal Care Aide and not as some people might have misunderstood CPA which is a Certified Public Accountant. Speaking of government related things, when I went to my appointments, I noticed that there were lines in several different areas for parts of the process and I said, hey, this reminds me about going to the Department of Motor Vehicles, but I think most people will find that things are a little more expedient at the vaccination than they are when they go to the DMV in person, right?

Guest:  Yeah, I think everyone's experience is good.

Host:  Okay, well, I guess that's a simple enough answer yes, they will be more expedient. One question that some people might have is, after you get the jab, as it were, you are always asked to go to a waiting area for at least 15 minutes. Why is that?

Guest:  So, as I explained earlier, even though severe reactions to the vaccine is rare, they still do happen. So, the keeping you for 15 minutes is to make sure that if you do have a reaction to the vaccine that the medical personnel on site can help you. But there are some reactions that could happen after that 15-minute mark. So, if something happens like you have a rash or you have a headache or pain at the injection site, you should reach out to your doctor.

Host:  Great, well that you just covered the next question that I had, so I'll move on. You already alluded to the fact that vaccines, such as Pfizer and Moderna require a second shot. Isn't that usually scheduled by staff, right at your first shot location?

Guest:  Yes, so this can work in either one or two ways. Either after you receive your first shot, you're automatically given a card that states when your second dose is. Or the other way this could work is you can receive an email afterwards with information about your second appointment, though, do know and I should mention this, that if you are going through the State Department of Health, they do sometimes change your appointment time on you.

Host: I'm shocked.

Guest:  So always be on the lookout for that, that actually happened where they changed the time of my second dose and sent me an email notice that they had done that.

Host:  All right. And let me play devil's advocate for a moment. Once you've gotten your two shots you can just throw your mask away and forget social distancing and hand washing and all that stuff, right?

Guest:  Absolutely not. There are several reasons why. So, after you get the vaccine, it takes time for the vaccine to build up into your body, and people are considered fully vaccinated two weeks after their final shot. And even though the vaccine protects you from COVID, there's still a chance that you might be able to give it to others. We're still learning a lot about the vaccine and how long it could protect people. So, until we know more and learn more everyone should follow the guidelines that are put out, which does include mask wearing and different changes that might vary from there.

Also please know that if you're using public transportation including paratransit, or if you're visiting a medical office like a doctor or a dentist, you will need to still wear your mask, even if some private businesses have decided that people who have passed the two week mark may go without them they want to.

Host:  Good to know. If people want to get their own copy of the guide, I imagine that they can contact you folks at YLAN. How can they get more information and talk to you?

Guest:  So, they can reach out to us, either through our website by email or phone. And if you visit you'll be able to get all of our information there, and just reach out and we'll be able to help you get situated. And you can also contact your local independent living center for more information and get connected through to us as well.

Host:  And if people go to the YLAN website, I think they'll find out that there are various other programs and outreaches that may interest young people with disabilities, and we encourage them to look that up. We thank you folks very much for informing our listeners about your work. Breanna, and Melanie, and we're delighted that we could have you with us.

Guest:  This was great.

Host:  Terrific. You've been listening to Independent Perspective In-Depth, a program presented in the public interest by WNYIL family of agencies, courtesy of the NFRRS. Our guests were Brianna Gower, Director and Melanie Hecker, a Council Member of the YLAN. This program features the song A Little Ditty on the Dance Floor by Jay Lang available under Creative Commons Attribution noncommercial license. Jillian Moss Smith was away this week, I've been your host Ernie Churchwell. If you wish to hear this program again a couple days after the on air broadcast, you can find a podcast on the NFRRS web page, on the Programming tab under Bonus Programs, and also on under Public Relations/Podcasts, and eventually it will be available on about nine other podcasting sites such as Amazon, Apple, Spotify, Google and various other popular pod casting sites, as well as various other programs offered by NFRRS. So, take in news, periodicals, publications, and other things that can be heard by people with transient impairments, blindness, dyslexia and whatnot. Thanks so much for being with us. Have a good week and be safe.