Transcript of “Rights
Here, Rights Now –
Episode 24: An
Interview with the Brain Injury Association of Virginia.”
Produced
by the disAbility Law Center of
Virginia.
[INTRO]: The
information provided on this podcast does not, and is not intended
to, constitute legal advice. Instead, all information, content and materials
available are for general informational purposes only.
[Enter host, Ren Faszewski.]
[REN]: Welcome
to Right Here, Right Now!, a podcast about disability advocacy
and activism. I'm your Advocate host, Ren Faszewski.
[Enter host, Virginia
Pharis.]
[VIRGINIA]: And I'm your Advocate host, Virginia
Pharis.
[REN]: Every
two weeks we dig into to relevant issues, current events, and avenues for self-advocacy.
[VIRGINIA]: Because someone has to.
[REN]: And it might as well be us.
This podcast is produced and edited by the disAbility Law Center of Virginia, the Commonwealth’s
protection and advocacy agency for disability rights. Find out more at: www.dlcv.org.
[REN]: So Virginia: We have quite the special guest with us here
today.
[VIRGINIA]: Yes!
Is this our first cross disability agency podcast? Finally happening?
[REN]: I
believe it is. We have Anne McDonald—who is the executive Director of the BIAV.
She’ll be talking to us about work that BIAV does. And, the great services they
provide. And I’m VERY excited to talk to her.
[VIRGINIA]: But
before we jump in, let’s check out disability in the news.
This year dLCV staff and volunteers
surveyed over 20 public libraries across Virginia. We surveyed the parking lots
to ensure accessibility as well as internally for accessible technology. Many people with disabilities rely on public
libraries and their computers to register to vote, apply for social security,
and connect with service providers. Many
libraries we surveyed did not have any issues, which we are very grateful for.
The Staunton Public Library had some issues with their parking lot.
They did have signs to indicate which parking spaces were
accessible spaces, but the signs did not meet the correct height requirement
set forth by the Americans with Disabilities Act. Moreso, the signs
did not have any attached “tow away” language, which is
mandated by Virginia law. dLCV sent a letter to Staunton
Public Library to bring attention to these issues. Within two weeks dLCV staff received a letter from Staunton Public Library
thanking them for bringing this issue to their attention.
Furthermore, they have already met with the Building Services
Division in the City of Staunton to fix the sign height and add the tow away
language. We appreciate their swift
response to help make their building more accessible to all visitors!
[REN]:
Well, again, Anne, thank you so much
for joining us on this podcast.
[Enter, Anne McDonald.]
[ANNE]:
It’s
good to be here. Thank you.
[REN]:
So, we’re going to jump right into
it. What exactly is the BIAV?
[ANNE]: The Brain Injury Association of Virginia, or BIAV
as you’ll hear me refer to it, is the ONLY
statewide non-profit in the state of Virginia (wow) that is dedicated exclusively to treating those with brain injuries, their families, and those
that care for or about them.
(Again-wow). Our mission is to spread
education, awareness, support, and community research, to improve the quality of life for all people affected by brain
injury.
We serve- somewhere in the neighborhood- of about FIFTEEN THOUSAND
PEOPLE a year. (WOW.) We were founded in 1983 by
parents who were trying to figure out how to cope with brain injury. And today,
we’re still really
focused on that goal. And
so that we can provide programs and
services for what comes next.
[VIRGINIA]: So, you’ve
already touched on my next point a little bit, but,… What
is the criteria for the people you provide services to?
[ANNE]: Well,
you know, our criteria is basically just to
have a brain injury in some way. We’re not insurance dependant,
so we don’t look for any financial gain. Since we’re not providing direct services, we don’t require any paperwork that
proves you have a brain injury. And a brain injury can present quite a continuum of injury, from
individuals who have a mild injury, who feel those symptoms for a
relatively short period of time- to those who sustain a very serious,
significant brain injury. They need advocates to help provide their care,
provide their voice, provide their link to the outside
world. We serve everybody. Whether it’s a child or parents, calling about how
that child should receive education (their) Or it’s a parent who is trying to
figure out where their child will live when they are no longer able to provide
the care. We see…- quite a number of those scenarios that come to us. [Pause.]
[REN]: So
you said that, part of the reason you are able to provide, and you have such a broad
criteria, is because you don’t provide
direct services. So what services do you
guys provide?
[ANNE]: So,
we—[…] We operate under
mental health wise we provide assistamce customized to someone’s needs. We also provide in person &
virtual support groups. Now, we’re not
currently offering support groups because of COVID, BUT we’d like to start
that again. We reach out to newly injured Virginians, who are
reported to the state wide hospitals, who the registry is having to diagnose
a brain injury. And we work with hospitals in human services branches in the
state agencies to better meet the needs of those with brain injuries. Our staff
hosts education & training events through conferences, seminars, and
workshops, and we participate in public awareness for brain injury activities.
We also lead advocacy efforts to expand the system of care. And
help those with brain injuries- and their families- protect their rights. And
their services. And (wow)- we also hold camp Bruce Macoy- named in honor of a former camper. It’s a week-long rest & respite program- for people with
brain injuries and their caregivers. And that is what’s responsible for
bringing me to the Brain Injury Association. I was an Occupational Therapist
(OT) working at Sheltering Arms, many many years ago.
They came to me and they said, “Hey! We’ve got this great summer program- it’s
for folks with brain injuries- Would you come participate?” And it changed my
life. In a good way!
[VIRGINIA]: You’ve
mentioned that chain of services where we’ve sort of had—legislative advocacy- or, support
groups, or outreach. What are the best reasons for folks in the community to
call you? What do you hope our listeners are going to- hear- and go, I need to
pick up the phone and call them?
[ANNE]: Well,
there are primarily two (2) reasons why I like/encourage people to call us. Number
one is- You never know what you don’t know. So if you’re really struggling,
apply resources or struggling with what comes next, or what the journey needs
to look like, having folks who’ve had experiences on your side can be very
helpful, you know. Our information and referral staff are simply outstanding!
They have between them a combined 100 years of experience with brain injuries.
(WOW.) So, between the education that we can provide, with the supportive
counseling we can provide, and the
roadmap, those are all really good reasons (I’ll say!).
But, you know, sadly, we can’t meet the needs of everybody that
calls, you know. We’re just an organization that has some significant services gaps for brain injuries. And so sometimes I
tell folks: Even if we can’t help you it’s really important that you call, because
we put that information in our database. And we’re able to go to the
legislature and say, “Of all the people that called BIAV last year, 47% said that they were worried about housing.
They didn’t have someplace that they could go to- a community of their
choice—that had the support. […] “What am I going to do now?”
And so, even though we may
not have an answer, we hope that those answers are
created by your calling us and telling us- What those challenges are.
And we know those needs change over time. Since- so that’s why it’s important
for loved one’s to call us when their person is still in acute care, or their still uncertain- so that we can figure out
what those next steps are. It’s really important for those things- for people to call us- even if it is
[….] [Pause.] You know, (something like) 15 years later, so that we know
how/that those needs changed over time. And we can be an association that responds- in a FORWARD SORT OF WAY.
[REN]: So
you mentioned, you know, taking that kind of information to the legislature, and it’s very clear that
you guys are great allies to
disabled people in the legislature. What can other folks who want to help people with brain injuries
do to get involved??
[ANNE]: Well,
there are a couple of different ways that folks can get involved. You know if they
simply want to…communicate with their legislatures during the GA session, we
have an advocacy page on our website. And so we break down what the issues are,
and we also provide letter templates and how
to find your legislature and all of those things, people can do
independently on their own, at a time that’s right for them. We also, every year, do an advocacy webinar
that folks can download, […] that highlights what the issues in the [upcoming]
session [actually] are.
Also, the BIAV has advisory boards, and if someone is interested
in serving on one of those, the activities that they are
engaged in are advocacy as well. Tell us what life is like for you on a daily basis. Tell us what’s YOUR biggest
disability right (issue). We have these advisory groups sort of based on
the categorization of the person with those lived experiences. Are you a
caregiver? You know, are you someone who works at a hospital or a place like
Sheltering Arms? That’s rehabilitating folks with bi’s.
Or are you someone that works in another sort of private practice? Like a
doctor or a therapist. We also have groups that are of standing base- Are you a
person with a mild brain injury? Are
you a person that has issues related to- [pause]- your
living area.
Like, do you live in a rural area? How do those differ from folks
that live in Urban Areas?? There’s also the Community engagement coordinator,
and that person is responsible for helping folks that want to volunteer, that want
to get involved, find the right mechanism—to do that. Whether that’s
something that you do on your own or if you do that in a group. Help you figure
out where YOU are, help you be comfortable with the advocacy process. It’s really not as scary as people think it
is! J
[VIRGINIA]: So,
most important of all, how do folks
get directly in touch with BIAV?
[ANNE]: Well,
we have a lot of information on our website, that folks can look over- when the
time is right for them. We have an online resources directory, where they can
find specialists, where they look- either- they can search by zip code or by
specialty. We have an extensive library of articles and webinars and quick
guides.
All of those can be found at www.biav.net. We also can arrange to have a FREE one on one
consultation with staff over the phone. Or we can do it by email, or a virtual
meeting. Whatever you need, of course, for what comes next. What we do in
those- we meet you where you are- as I said earlier, in your journey and can
provide very personalized and timely assistance that they can use to address
the issue that someone is dealing with. No matter where they are within their
diagnosis.
[VIRGINIA]: And is there
a phone number you’d like to give our listeners? Or is the best way to contact
you guys online?
[ANNE]: Sure I
can give you our phone number AND our email address. Our phone number:
804-355-5748. Email: info@biav.net
[VIRGINIA]: Anne, thank
you for being on here! Before we let you go,- I’m sure
that this is an amazingly busy day, I’m
sure the calls are pouring in right now- Are their
any other resources listeners should be aware of? Anything besides that great
website?
[ANNE]: The
Department for Aging and Rehabilitative Services is the largest state agency for
people with [all sorts of injuries.] (DARS) They provide a wide range of services,
particularly if people are looking to be employed
again. Or other community based services and support. The Brain Injury
Association of America is also a really good resource for folks that are going
through that and looking for additional information on brain injuries. One of
the things that we’re really lucky to have in Virginia is a model center for Traumatic
Brain Injuries- these are centers that are funded,
federally, to provide services. So the model
systems for TBI are also a great resource. Find that at TBI.org.
[REN]: Well,
thank you, again, Anne for being on and for taking your time with us today.
[ANNE]: Well,
I’m excited for the opportunity. Thanks, ladies.
[VIRGINIA]: And
now, A dLCV Highlight!
Recently,
US Supreme Court Justice, Ruth Bader Ginsburg, affectionately known
as RBG, passed away at age 87. RGB wrote the majority opinion on the landmark
1999 ruling Olmstead v. L.C. This decision affirmed the right of people with
disabilities to live in the community. In the decision the high court determined
that under the American’s with Disabilities Act states must move people with
disabilities to community settings if treatment professionals determine such a
placement is appropriate, if the individual does not oppose the move, and if
the placement can be reasonably accommodated. Ruth
Bader Ginsburg knew that community placements would benefit individuals with
disabilities far more than being confined in an
institution. She will forever be remembered as a
champion of the rights of millions of people with intellectual and
developmental disabilities.
[REN]: Thanks
again to Anne for joining us today! I know that so many of our listeners were
looking forward to hearing her talk about what she does, and what BIAV does; It’s so important. And
it’s just amazing to have her on. So thank you again.
[VIRGINIA]: Yes, and if
you found us and this podcast through our BIAV collaboration- Welcome! We are
so happy to have you!
[REN]: Absolutely!
And thanks to all of you for listening to this episode of Rights Here, Rights
Now!, brought to you by dLCV.
We’re available on Apple Podcasts, Spotify, or wherever you get your podcasts.
Don’t forget to subscribe and leave us a review!
[VIRGINIA]: If you need more information about dLCV and
what we do, visit us online at www.dLCV.org.
[REN]: You can
also follow us on social media- we have a Twitter: @disabilitylawva
& we also have Facebook.
[VIRGINIA]: Until next time, I’m Virginia Pharis
[REN]:
And I’m Ren Faszewski. And this has been: Rights Here-
[VIRGINIA]: Rights Now!
[End
of Transcriptions]