Senior Public Policy Analyst for the National Disability Rights Network (NDRN)
July 17, 2018 - 2:00pm to 3:00pm

Joyce welcomes Dara Baldwin, senior public policy analyst for the National Disability Rights Network (NDRN), the nonprofit membership organization for the federally mandated Protection and Advocacy (P&A) Systems and Client Assistance Programs (CAP). Collectively, the P&A/CAP network is the largest provider of legally based advocacy services to people with disabilities in the United States.   NDRN’s mission is to promote the integrity and capacity of the P&A/CAP national network and to advocate for the enactment and vigorous enforcement of laws protecting civil and human rights of people with disabilities. Ms. Baldwin will discuss the organization’s mission in depth.

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JULY 17, 2018

1:00 PM CT


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>> Welcome to Disability Matters with your host, Joyce Bender.  All comments, views, and opinions expressed on this show are solely those of the hosts, guests, and caller he's.  Now the host of Disability Matters, here's Joyce Bender.

>> JOYCE BENDER: Hey, everyone.  Welcome to the show.  I hope you are having a great day and you know, anyone that follows these shows, you know what I'm going to say, right?  Yoshiko.  Special shoutout to Yoshiko.  Now, I've explained this before but I want to tell you, we are the only group, minority group, or protected class group in America that we don't know our history.  That's because, they don't teach our history in schools.  So, if you go out and you're walking down the street, you'll say to people, hey, who is Justin Dart?  95 percent of the people say, I don't know.  But, if you talk to people in the disability community, in Washington DC, to presidents, to Senators, to Supreme Court judges, I don't care who it is.  They know Justin Dart was the general of the Americans with Disabilities Act and his wonderful wife that I love so much, Yoshiko, is still out there fighting the fight.  So, that's why I do that.

And I also have to give a very special shoutout to Ireland.  Once again, 17 countries listen to this show, but Ireland, you must have, you must have people like our guests.  You must have people that are disability rights advocates here.  But thank you so much for following the show.

And Highmark, our leader sponsor several years in a row of this radio show.  Thank you, Highmark.  I always say Highmark sets the high mark for other companies to follow.  And AudioLive who is also a sponsor of this show with a tremendous software web product.

All right, I got to tell you before I even start the show today that I love this woman, okay?  That's how I'm going to start telling you this.  I love her.  Love her.  As a matter of fact, if it would be up to me, she would be running for office somewhere, I don't know, in the city, go to Congress.  I mean, she is like a tremendous advocate.  Tremendous.  When she came to visit our office, as you all know, I'm headquartered at Pittsburgh, Pennsylvania.  And you all know that Bender Consulting Services focuses on the employment of people with disabilities and our new software or training product, iDisability.  Well, we had Dara come in for lunch one day to our corporate office, when she left, even she does not know how she had impacted the people.

For example, Gerald said, you know what?  I've got to learn everything I can about disability rights.  I just want to know what to do, what to read because she really impacted me.  And the she is Dara Baldwin, the senior public policy analyst for the National Disability Rights Network.  Dara, welcome to the show.

>> DARA BALDWIN: Hi, everyone.  Thank you so much, Joyce, for that wonderful introduction.  You are so sweet.  And unfortunately, I really can't run for office because I live in DC.  So, you know, I'm going to push for DC state hood out there.  Please support us.  Also, happy ADA anniversary to everyone this month.  Thank you for having me.

>> JOYCE BENDER: Oh, thank you for being with us.  And you know, that's it.  Every month, every July, we have our disability rights leaders.  But I got to tell you, Dara fights the fight all the time.  More than anyone I know, she is always out there.  And Dara, maybe you could first tell our listeners, how did you become involved with the disability rights movement?

>> DARA BALDWIN: Oh, sure.  It's Dara.  It's interesting.  Literally, fate brought me here.  I came to Washington DC in 2007 having just gotten my masters degree in public administration and wanting to do social equity work.  And I was doing a child advocate in New Jersey, so, of course, I touched on disability for children and students with disabilities.  And I worked in juvenile justice, in our criminal justice system that youth in the system made sure they continued to have their IDEA, individuals with disability education act rights.  And then came to Washington DC because I had lost my job in New Jersey that, you know, last one in, first one out.  And everyone said, you need to be in DC.  You're too big for jersey.  So I went into DC, started in criminal justice until about 2009 and just so happened in my connecting with people, PAT, its first organization I worked with had a grant to do some diversity cultural competency work and that's how I got into the diversity community.

I left in 2011 and went to NCIL, national council of independent living where I did policy work.  Had a wonderful opportunity to work with a grass roots organization NCIL was run for people with disabilities and then I was plucked by the Mayor to come work with him, he is a disability champion.  Started in office of Washington DC and wanted me to help out with disability rights.  So I went there for about a year.

And I am not the government type, so I was like, okay, this is nice.  I'm an advocate.  I usually fight these people.  Left there on good terms and everything, I'm a DC resident so that was wonderful.  I'm still in contact with that council and pushing disability rights.  And then ended up here at National Disability Rights Network in 2014.  I just celebrated my first year in June of being here.  This is a national office for the protection and advocacy program, which are the civil rights lawyers for people with disabilities.

And in my life, in this work, I got to meet great people like you and other people who mentored me and helped me learn and made me read books and made me learn about the ADA and what it was doing.  So, that's how I came and I am a proud member and officer in the National Council of Independent Living so I still remain close to grass roots and I'm also an adapter.  So, that's how I did it.

>> JOYCE BENDER: Well, thank goodness you did it.  We're lucky you did it.  We're blessed you did it, Dara.

>> DARA BALDWIN: Thank you.

>> JOYCE BENDER: Yeah, you are a senior public policy analyst, very prestigious role in our world, in the disability rights world.  What is that?  What do you do?  We have listeners from around the world so just maybe give them a little insight into what that means and tell me, what is NDRN?  National Disability Rights Network?  What is that?

>> DARA BALDWIN: Yeah, so National Disability Rights Network is the national office for the protection and advocacy program around the country, which are the civil rights lawyers for people with disabilities.  Founded in 1976 from Geraldo Riverez first investigative work he did on ‑‑ people with MR, we don't use that term anymore, but developmental disabilities as well, were housed and being seriously and horrifically abused.  And Senator Jacob Javits, he was a Republican and he created the protection advocacy network.  And we are unique in the fact that we have 57 programs around the country.  They are noncompetitive, annually granted programs.  They are federally funded and in the states.  They're there to observe and watch people with disabilities and taking care of ‑‑ 57 programs, we have one for every state, there's 50 states in the United States, six territories, so we have that.  And then in the late 80s the Native American community came, they created one specifically for Native Americans.

So, we're there.  That is what the protection advocacy does.  Out of P and A, disability rights Pennsylvania.  You're there and we love Perry Jude and the whole Pennsylvania team.  I know you're very close to that crew there.  You have a P and A, you have lawyers, social workers, benefit specialists, peer to peer people, advocates, self‑advocates, working and a P and A.  We don't just go around suing people.  They go around to institutions where people with disabilities receive services and they make sure they're being treated correctly and their civil rights are being enforced.

And then they also work outside of institutions, right?  Making sure people have their disability rights as you do in employment and in housing and in transportation and so that's what they do.  We are their national office.  I work in the policy team.  There are three of us.  Myself.  Eric Juman, my Executive Director and Amanda Lowe, my cohort;  another senior policy analyst here.  And we work on about 22 different issue areas and our wonderful Executive Director is Kurt Decker.  Many people may know him.  He helped start NDRN and also helped start disability rights Maryland when it was there.  He helps us too on the hill with conversations and stuff like that.

My job is just that.  I go around town, DC.  I actually go around the country talking to people but we work in coalitions and this work, you know, especially in these times you can't cover everything, you can't be the expert of everything so we're in coalitions that we work well.

We're in coalitions around disabilities, single issue areas, disabilities, CCE, consortium of citizens with disabilities.  We also work from an intersectionality which is a racial theory, race theory, critical race theory from Kimberly Crenshaw and also work on diverse and cultural competency that people with disabilities are all things.

So, imagine you're having an African American trans woman who is a refugee with a disability.  They exist.  They're out there.  And we have to help them so we also work with leadership conference on civil and human rights and we work with Justin's round table around criminal justice area.  So we do that work.  I go to those meetings and have conversation about public policy and how we can change things in DC.  I go to the Hill, which is where Congress is, the house and Senate and talk to Congressmen, both House representatives and Senators, both men and women and talk to them about we want change.  What we want you to stop.  How you need our help.  I bring them in, as I like to tell people, from the suites.  You guys to the suites, which is where they are.  And I like to make sure I'm one of those people who can do that, I can talk to both areas.

Not so much now, but we used to work very closely with the administration.  It's a very strained relationship now, we still do work with our administration but not like it has been in the past.  We used to have quarterly meetings and have conversations.  Because people think once you pass a law, that's it.  You're done.  And that's not true.  The law has to be implemented.  There's what's called guidances and resources that are provided and laws get reauthorized and then they get updated, and how is that done?  That's done in the administration.  So that's why we also have to be involved with, how do you implement these laws?  Like LIOA, right?  You do employment workforce investment, sorry, innovation opportunity act.  Like, that's the implemented.  It was passed in 2016.  Now it's being implemented so we work with Department of Labor and all those people so that's my life and that's what I do.

>> JOYCE BENDER: Wow.  That's a lot.  And I don't think people realize with National Disability Rights Network, as you just said, it covers so many thing, education, employment.  Will never retire from disability rights.  Until she told me, you know, I do not know.  Let's say, there's a prison.  Where we know there's a problem abusing people with disabilities, not providing interpreters for the deaf, whatever it would be.  I never knew that you could just go in, you know.  That you didn't have to get some special permission.  That you could just go.  You know, like if there was some institution abusing children that you found out about, that you could just go in and ask, you know, that you wanted to do an audit or review or whatever.  I never knew that.

>> DARA BALDWIN: Yeah, this is Dara, so, it's called our access authority and actually, NDRN does not have it.  We're more like an association for the protection advocacy but the PNAs have it.  So, disability rights Pennsylvania, again, where you are, and what you were talking about with Chris Griffin, who I've known for years.  Hi, Chris.  She was at disability law center in Massachusetts and that's our member there.  They have access authority to go into any facility where a person with a disability is receiving services.

So, you know, you can't really name an institution in a state where there's not somebody with a disability, right?  And we take care of cradle to grave.  So, that's schools and, you know, nursing homes and as you said, jails and prisons.  And what that means is that someone from protection and advocacy, the social workers, the lawyers, people think it's just the lawyers, no.  But all of them can go inside a facility, that's their job.  You know, they show up.  They don't tell people when they're coming, right?  Because that's when you get Tom and Mary who abuse people, so you don't want them, right, so you just show up.  They can look at any records they wish, whether it be the medical records or facility records, and then they also can talk to anyone from the janitor to the warden or director of the facility because usually it's the janitors and people who tell you, oh, they treat these people horrible.  Go in room 444, so that happens.

But, you know, it sounds great.  Just so you know, we've had lots of push back on that, well the PPNAs have, on that access authority like what's happening not.  And what you said, we hear at NDRA and around the country, we work on so many issue areas and civil rights lawyers are working for people who are low socioeconomic status, people of color, immigrants, refugee, and what is just happening now with the separation of children and those children being in those detention centers, we have PNA networks trying to go in there, they have some pushback and having conversations about that.  So, yes, it's in our statute.  It is a wonderful thing to have and we do it but we do get push back from time to time from states so we work on that a lot too of making sure people understand that access authority.  And it goes back to what I said, the foundation and basis of this was at Willowbrook, an institution where people were abusing other people, and no one was there to enforce it.

So Senator said, no, we're going to have someone come in and do this.  So that's what it's based on is that statute.  We're here to investigate abuse and also to make sure these people with disabilities are treated properly and correctly and they have their civil and human rights enforced and that is what we are going to do.

>> JOYCE BENDER: You know what?  That is so amazing how that came from that Geraldo Riverez show.  So amazing that it did.  But get ready I have to ask you a question.  ADA Education and Reform Act.  Get ready.  Forever when I would see her, thank God, she has been telling people before they were talking about it.  I know that you told me many, many times.  But, where is that?  And isn't that a strange name?  ADA Education and Reform Act?  It sounds so good.  You know?  That name sounds so good.

>> DARA BALDWIN: Yes, this is Dara, yeah?? ‑‑

>> JOYCE BENDER: For people with a disability.  It's not that good.  So, let's hear it.

>> DARA BALDWIN: Yes.  No easy question, right?  Okay. And in this month of rights out, July 26th anniversary of ADA so still fighting this fight.  I have a personal ‑‑ where I wrote the history like what we were talking about.  You need to learn when you do this work, policy analysts.  I analyze the situation.  I analyze the law.  Where did it come from?  Why are these people doing it?  What is their goal?  How can I change that?  So I needed to know where it came from.  Now, I got this thrown in my lap July 2011, which was my first day at NCIL.  I'll never forget that.  7/11.  I'm like, what is it?  They're like, we got to fix this.  So I went and learned about it.  So the first year ever introduced around this was the year 2000 and back then they called it ADA notification.  It was the businesses saying they don't want to be accessible, basically.  I'm going to use basic terms, people.  Of course there's whole legal terms.

But the ADA notifications would change Title III in reference to architectural barriers, the doors and the ramps.  If you go to a public entity, a private entity, not a public entity, excuse me.  So, like a 7/11, a store, a mall, and they're not accessible.  Mostly 7/11s this is going to be about because now malls and stuffs are accessible.  These strip malls and areas where probably most of your, have to be manager, owner, whoever is around the corner.  Anyway, you're telling them, you're not accessible.  My friend can't get in because of course the person with the disability can't get in and say that.  Basically, the person wants to say, they want a 90‑day notice.  Okay. We're not accessible, can you come back in 90 days and we'll try to fix it.  We're saying, it's been a law since 1990.  There's plenty of resources, a tax credit, resources for the government that will tell you how to do this.  Protection and advocacy programs, like I just told you, we have advocates who work with us who will go and say, how do we make our place accessible?

But there are some businesses, about 34 for HR620 and what happened in the 114th Congress, which is the one before this, they got smart.

They talked to some communications people and some publicists and they changed that name from ADA notification to ADA education and reform act.  When it came out, I said what you said, this is interesting.  What kind of bill is this?  I read it and said, oh, that's the ADA notification.  Oh, they got slick.  They got slick.  Of course if you send it to Congress, you're looking at it like I do, you're like, here's a good bill.  Here's the other side of it.  In that Congress, we have the ADA drain where many of the wonderful people who helped pass the ADA in the house and Senate are gone.  They retired and they left.

So, there's only 22 House members left and 13 Senators left and actually one of those, Senator Hatch is going to retire so he's gone.  And some of those Senators were Congressmen, like Chuck Schumer was a Congressman so he was in the House side.  So the history isn't really there.  Then you have Congressional staff, the average age of 25.  So they've grown up with the ADA.  Just like I have young girls in my family who look at me when I say, my mom had a credit card but it was in my father's name.  She couldn't have a credit card in her name.  They're like, what are you talking about?  They're not growing up like that.  So, this generation which is what we wanted didn't grow up with not understanding.  What do you mean children with disabilities can't come to school with me and the doors weren't wide enough and they also don't know the law.

So, this bill came through, unfortunately came from Texas, representative Poe and this is the analyzing, right?  Like learning and knowing what's going on here.  Two things.  Poe is from Texas.  He is a person with a disability who didn't want to show it.  Until last year, he was getting away with that.  Many people.  But when they had those horrific hurricanes in Houston, he had it in his contract, don't show my wheelchair.  They're like, we don't have time for this.  Now people see him all the time, now his podium is down his level, he changed all of that.  Whatever.  But this is his bill.

He tried to pass it in Texas.  And in the first version, he had if you tried to fight for your right, it was a crime.  You would be charged with a criminal offense.  So, that's how horrible.  Texas Republicans said, we're not going to fine people for fighting for their civil right.  But, anyway, Poe brought it here.  Blah blah blah.  We're here.  Now, this is why I thought a new, and also, my boss, Eric, we both thought this bill would pass because it's been 18 years that these people had like 2000 to now that they've been trying to get this passed.  We finally have a Congress that is a House Republican led, Senate Republican led.  Now, we had that before and they couldn't get it passed.  The reason is that George W Bush was in the White House and he would have never passed that bill, right?  Because his father signed the ADA and he was there and they understood ‑‑ you becoming accessible.  This was taken care of.

And this law, this negates that and changes that contract.  So, George W. Bush was like, no, I'm never going to sign that.  So they didn't have the opportunity.  But now you got a House, a Senate, and a person in the White House who says, bring it to my desk and I will sign it.

Why is that?  Because he was a member of the National Realtor, how did he make his money?  Through real estate?  And the National Real Estates Association is one of the largest organizations supporting this bill so of course if it comes to his table, he'd want to sign it.  Unfortunately, I don't think people took it seriously because every year, like I said.  Oh, car A the notification bills, they never ‑‑ Dara, the notification bills never go anywhere.  Well, things change.  We had a hearing, a mark‑up, we had never had those things before.  And then in November, a perspective from the Virginia Republican Chair of the House Committee and now it's his retirement and then Mr. Poe from district announced his retirement.  The other thing that was different in this one that you had for the first time Democrats who actually not only supported this bill but helped write the bill.


>> DARA BALDWIN: Yep.  You had representative Scott Peters from San Diego, California.  Representative Jackie Sphere who is supposed to be a human rights icon, she's from California.  She sponsored this bill and helped write it.  And then you have Omni Berra all from California, all Democrats.  They were there and they helped write it, they are on there as authors and co‑sponsors so that was the first time we had that as well.  So here we are in November.  When they announced their retirement I said, they're going to pass this bill as of March 5th because Poe and ‑‑ are going to call in their chips.  We're leaving.  We're retiring, we promised the community we're going to do this.  Because what happens when they retire?  They're going to be sitting on so many boards, we did your bidding, we got it passed in the house.  So here we are, it comes February 1st.  They reported out of the committee.  It had gone through mark‑up.  We did sit down and try to talk to them, try to have conversation.  Yes, we have tried to talk to the business community people to ask these questions.  They would only meet with us once.  This is not all of the business community.  Let me say that as well.  These are the international council on shopping centers is the leader person on this.  The Asian American realtors association, and as I told you, National Real Estate Association and mostly the franchise groups, people who own holiday Inn, hotel, these kind of things.  Not your large businesses, not all the businesses supported that.  And I can send you, Joyce, so you can have on your website the letter of support so you can see the businesses that supported this.

I don't want anybody to think all businesses want to do this.  They're never all for anything.  Unfortunately, this law passed in February by a very large amount, 325, I think was the number and there were 12 Democrats who voted for this bill.  We call them the dirty dozen.  And I can send you the wonderful graphic that one of my, our great advocates out here did.  I am not a graphic person and this person is and we call them out wherever they are in Town Halls that you voted for this bill.  That's where that is the HR620 is passed.  We can't go back and change that.

Now, the Senate side, which is, right, you have two houses of Congress.  Immediately, before this bill passed to Senate side, 114th, it was also the first time you had a Senate bill introduced.  Which was done by Jeff flake.  Senator Flake announced his retirement.  He's not coming back.  So I'm like, is he going to be like, I'm calling in my chips, you got to pass this bill for me.

And also, Arizona was a state that passed their own ADA notification law.  Remember, we have federalism in this country so you can pass laws.  You can't weaken or change the core but you can pass your own laws so Arizona passed a really bad ADA notification bill in October of 2016, I think that was.  And Senator Flake loved it so he went there.  Again, we had the issues and concerns around Democrats in the Senate which we always have the same ones as we have what's going around SCOTUS now and we have Democrats from red states up for election and might have some hard times here so we work with Senator Tammy, Democrat from Illinois who is an Asian American woman, right, that person with disability, physical disability has worked with this community for years when she was in the house, now in the Senate.  She wrote a letter, personal.  This is about her, this is about her family, this is about her friends, this is about her fellow vets.  And said, it's a very strong letter.

Again, I can send it to you so you have it.  I'm sure many have seen it.  Saying Senators, it said, we will not sign or pass a bill or participate in any kind of ADA notification bill.  It is unfortunate it took us about a month to get to 42 Democrats on there, right?  Everybody saying, oh, we can get that.  No it was not easy.  We had to talk to several of those Senators, let me give you one.  I am from New Jersey so Senator Rob Menendez, Democrat from New Jersey, had a very hard time getting on this letter.  Why?  Because he's up for New Jersey.  South of exit 9, if you know this, the turn pike, who is south of exit 9?  What do they known?  Asian Americans.  We have a huge Asian American community in New Jersey.  Love them.  They do their own work.  They have been saying, you need to do this, you need to pass the bill.  It was very difficult but he was one of the final ones in the last week to get on to that letter so I say that to say, there's also, I think five others who did not get on to that letter and one independent, Angus King who did not get on.  So we have this letter that says we will not sign this.  The numbers are there.

I hear people saying, now this is over.  It is not over.  This fight and our fight, regardless, is not over because of that letter.  Because this Congress still exists.  This Congress is December 31st at midnight, that's 115th, it's over.  And on the Senate, they have different rules they may have in the house.  You do not have to introduce the bill, have it go through the committee, have a hearing, have a mark‑up in the Senate.

A Senator can tack on a bill wherever he wants, an amendment at any time.  We're about to get into this budget season and that continual resolution, we got to watch what they're doing.  And yes, like I said, we have the 43Dems who signed that letter but we had some who didn't so even if you go with 51, right, Republicans plus five is 56.  They only need four.  They only need four people.  Believe me, I had the conversations from the streets to the suites who were talking to people like Menendez, like Mark Warner from the district saying, why can't we wait?  Why can't we be reasonable?  So what I'm telling people, NCIL and everybody else is you still must ring those phones.  You must call your Senators and say, you cannot pass an ADA notification bill.  Even if you have two Democrats in your state like in Illinois, that's fine.  They just need to hear it.  They need to go, Okay. Our people calling and saying, nope, we can't pass this bill.  Like I'm from New Jersey, if you're from New Jersey, Senator Troy Booker.  He's not up for election, call him, but keep calling Menendez because he can say no.  My disability advocates calling me saying, he cannot pass this bill.  He cannot be a part of this.

Just because signed a letter, let's be real.  When George H Bush was running, he said no new taxes.  Hello, we had new taxes.  So let's be real.  We have seen this before so I just want people not to get complacent or comfortable.

This fight is not over.  The Senate and the Hill needs to hear from us continuously and specifically in this month of the ADA celebration.  And the final thing I'll say is that again this fight is not over because even when this Congress ends, let me let you know.  They will be back in year 19, with a new bill and trying to do this yet again because they won't listen to us so that's the other side of this advocacy is trying to get these companies to listen to us.  We have had another meeting with him, this one went a little better so we continuously tried to move that needle to say, stop trying to change the ADA because of some, you know, a few lawyers out there doing nefarious things around ADA and because of, you know, you have to admit you don't want to be accessible.  It's not just getting into a business.  You know, these businesses say they want to hire people with disabilities and vets.  Well, I don't know anybody who works in a facility or a place of business for eight hours and can't use the rest room.

So, if your rest room is not accessible, right, you don't stand or sit or whatever you're doing for eight hours and not use the rest room so your whole premise is that you don't want to be accessible.  So we have problems with that.  And then I'll leave this with you.  If it was us and this has been us, right, if we were working on a bill and it took us 18 years to get us passed in yon chamber and we were one step away from it being, you know, signed by the president, would you stop?  Would we stop?

>> JOYCE BENDER: Right.  That's right.

>> DARA BALDWIN: Exactly.  So, they are one step.  All they need is for it to pass in the Senate because the man in the White House has already said, get it to my desk and I'll sign it.  So we were that close.

>> JOYCE BENDER: You know what?  I want to say something here.  Dara, every ‑‑ I am like so fired up because I think this is so important.  I want you, first of all, to send me those letters, send me all that information, so I can put it out.  And you know what I'm going to do?  I'm going to be telling, I'm going to be playing this show and telling everyone to go back and listen to you because we cannot become complacent.  You are so right.  And I want to say about this, that there have been other times there have been bills such as when all of this was going on with CRPD and some of the Senators used to tell me like Senator Harkin that his phone was not ringing enough.  Not like all the other offices that were opposed to passing that.  In other words, it makes a difference, folks.  When you call and you say I know you signed this letter, but I do not want you to pass this ADA notification, it makes a difference.  Don't think it doesn't.  It makes a difference.  And with that, I don't know, I know you're so proud of this, Dara.  But every week, every single week we have a news break on our show called advocacy matters because we want to make sure that everyone that listens to this show knows what's going on.  And you know what?  The person for advocacy matters that does that is Peri Jude Radecic, are you with us?

>> DARA BALDWIN: Yay, Peri Jude.

>> PERI JUDE RADECIC: Hey, Joyce.  Hey, Dara.  It's been great to listen to the show and listen to Dara's message around the ADA notification act.  It's really so important that we all mobilize around it and heed Dara's message about it and listen to what she has to say.  And I appreciate your advocacy on it as well, Joyce.  It's really when we talk to members of Congress and they know nothing about the history of the Americans with Disabilities Act, we really have so much work ahead of us.  And so we've got a lot of work to do and I really appreciate you having Dara on the show to talk about these issues, so thank you.  So last week we started to talk about opioids and the complex issue that's raised by opioids and we discussed the issues of addiction as well as the barriers that are there for access for individuals with disabilities who have chronic pain.

So today, we want to look at some of the statistics and talk about what advocates can do around the issue of opioids.  The Institute of Medicine issued a report in 2011 and found that more than 100 million Americans, American adults live with chronic pain.  100 million American adults.  That's 40 percent of our adult population lives are chronic pain.  The U.S. census puts our adult population at 249 million Americans so 40 percent of us live with chronic pain the journey of pain did a study in 2014 that found at any given time on most days just over 39 million Americans live with pain.  So in any given day, 39 million Americans are living with pain.  That's a lot of Americans.  Now, we know the other side of that coin that the rate of opioid use has quadrupled from 1,999 to 2014 and we know that the deaths from opioid use has also increased.  There were just over 28,000 deaths in 2014 and now in 2016, we're looking at 42,000 deaths from opioid overdoses.  So, that's the other side of the coin.  We have a large part of the population who lives in chronic pain and then we have overdoses from the use of opioids.

Now, we know as we said last week, treating chronic pain is a complicated issue and this rush to label all people who use opioids as addicted and push individuals into treatment might be an overreach and can be a barrier to effective pain management for people with disabilities.

We know advocacy matter and while overprescribing opioids has to be addressed, the medical and mental health care communities must work with the disability community to find solutions to address the severe consequences of people with disabilities who's only management for pain is opioids.  This means that we as advocates have to work our way on to committees and other federal, state, and local boards so that our message can break through that has seemed to be a one‑sided debate.  So, that's our message for today, Joyce.  We have to push a message where chronic pain is real and while we want to certainly address the over-prescription of opioids, we also have to get a message out there that Americans are living with chronic pain and sometimes opioids is the way to treat that chronic pain.

>> JOYCE BENDER: Wow.  You know what, that is so serious.  That is so serious and Peri Jude, Disability Rights Network of Pennsylvania, you don't know how much I appreciate every week calling in letting us know what's going on, what do you think is important, what you think we need to be looking out at and for.  And once again, Disability Rights Network of Pennsylvania, what is that website, Peri Jude?

>> PERI JUDE RADECIC: Yes, it's  That's  And we do work closely with Dara and her team at the National Disability Rights Network.  We'll have an action alert out next week.  We'll talk about it next week.  That's my only heads up.  If Dara wants to talk about it, that's great.  But I'll save it for next week.

>> JOYCE BENDER: Save it for next week.  All right.  Thank you so much for calling in.

>> PERI JUDE RADECIC: Thank you.

>> JOYCE BENDER: You're welcome.  See, Dara, we do that every week, isn't that awesome?

>> DARA BALDWIN: Yeah, hello, can you hear me?


>> DARA BALDWIN: Yeah, that is.  And Peri Jude can great.  She does excellent work.  That opioid issue is great around what Peri Jude was talking about and also around creating more beds and more institutionalization of people who are recovering from substance abuse instead of helping them stay in the community.  I really don't understand how it's okay for ADA under the Affordable.  Care Act for all other chronic illnesses to be treated in community care, heart disease, we want to treat them in the community and in their home.  Yet for people trying to recover from drug abuse, they want to send them away.  Why is it that model for other chronic diseases doesn't work for that community?  I don't get that at all.

>> JOYCE BENDER: I don't either.  Well, you know what?  Disability rights is in the news right now because there have been several articles coming out about corporations considering ending plastic straws.  Whether it be like you said before, 7/11, Starbucks, whatever it is.  Their reason is, of course, because of pollution, problems with using plastic.  However, that is going to be a problem for many people with disabilities that need that or they will not be able to drink anything.  I wanted to see, what do you think about that?  What's going on with that?

>> DARA BALDWIN: Yeah, this is Dara again.  It is quite interesting.  Let's start from the beginning and the work I was talking about before, right?  Intersectionality and understand that people with disabilities are all things and we also care about all things, too.  People with disabilities in the communities care about the earth.  We are environmentalists.  Many of us, I work very closely with and Green Peace and a lot of the Latino communities doing environmental work and we've been working with them for years so we want to start there that if you want to do these things, this is where you sit down with those experts in that field and have that conversation and that was not done here, right?  Some advocates got together and just pushed forward what they want wanted to be done so let's start there.  I think anyone out there who is doing advocacy work and you want to do something that's going to affect communities, you try to bring as many of those communities to the table to have that conversation.  And that wasn't done.

It was an afterthought and I'm glad to say that has caused the community to say, wait a minute.  Let's see how we can do this.  That's one.  Two is, it was a law that was passed in Seattle, only one city right now.  The state of Washington.  And right now, of course, it's, you know, taken off.  I'm here in Washington DC.  Our City council is trying to do it here.  And what happens there is that exactly what you said, there are some people with disabilities who absolutely, positively need straws.  It's called assistive technology.  Anything that a person with disabilities needs to enhance their life.  And for them to have to ask about something that most people in the public have.  And also the way you're doing it, we're going to do this, the straws are gone.

And the other part of it, and I've talked to environmentalists about this, and there's a couple of articles out there.  Especially with the Starbucks resolution to this.

They're going to take away the straws and put on a plastic cap.  That plastic cap has more plastic in it than the straw has that they're trying to get rid of.  So, right, does that make sense to you?  What are you guys doing?  What's happening here?  And who is talking about this?  And other environmentalists have talked about other biodegradable, plastic, there's other kinds of plastic that you can use and this is where we talk about with corporations and companies and sitting and being genuine with your conversation with us.  When you say, yes, we're here and we want to include people with disabilities and we want to do that, you should mean that.  So, that's an issue and concern for us.  And here at NDRN, we do as we always do with new, every day some issue pops up, we're having conversations about it like with our Peri Jude, trying to get information about it.  But we do have concerns about the process of you or organizations or companies deciding to change people's lives where you did not include them in that conversation.  So, if nothing else, let's start there.

Like, you are not going to do this, corporations.  You are not going to make changes in people's lives and not include us, right?  We also have it, right, from organizations that start‑ups, and they don't include us.  And we've been lucky to sit at those tables and have those conversations and once we have those conversations, you will get better results but I think in this case there's going to be an issue around not providing services for one group of people that you didn't provide for others, which is Title I, and Title III for them, for private entities, and also the fact that your resolution is not resolving your problem and it's stigmatizing and negating other people.  A plastic top does not resolve the problem of using too much plastic.

>> JOYCE BENDER: That is so amazing.  That is so amazing.  Dara, before we end the show today, something Kurt Decker, I'll never forget this, years ago, I remember that article he wrote about 14(C).  I'll never forget it.  It was such a powerful blog that was going around that he wrote, but you know what?  Where are we on this?  Where are we in 14(C) of the Fair Labor Standards Act?

>> DARA BALDWIN: You know, I don't work on this anymore.  Amanda would know, but, I'll tell you what I know.  There is kind of a rollout of endings of minimum wage and how it's being done.  I know for a fact that those conversations are going on.  There's a couple of bills on the Hill, in Congress on the House side that Times Up bill by Representative Greg Harper, a Republican from Mississippi and also one of the co‑chairs of the Disability Caucus.  And then, but, there's a bunch of us in the civil rights community.  I'll talk about, because we talk about ADA, that is civil work.  Unfortunately in the civil work, I categorize them in three different areas.  You run across people who believe in paternalism, woe is we, we have to take care of them.  Then you run across people, they've been around a lot.  Clinical, being clinicians and medical model and curing them and fixing them, that kind of thing.

And then you have us.  Civil rights people.  People with disabilities have the right to live in the community, they just need services and supports.  We all need services and supports.  My support is I got to call my dad every day by 6:00 PM because I live in DC, he lives in New Jersey, he wants to know his child is okay.  That's my support.  Somebody knows I'm alive every single day, that's Jimmy Baldwin.  So that's a support.  Everybody has a support.  So, anyway, you still have these people who believe in paternalism and don't think that every person with a disability can work no matter what the disability is.  They don't believe in competitive integrated employment.  They want that definition changed.

They want things, you know, they don't want to see a change in what's going on.  I'm not going to say why.  There are other people who can say why.  I will tell you what I think, I see it all the time; people don't like change.  You still have people pushing back, we can't get rid of 14(C).  Families who agree with this.  Companies who agree with this because they just can't do it.  There's just no way you can have competitive integrated employment, so we're still fighting against that!  There is actually a bill in the House, if I'm not mistaken, I think on both sides.  House and Senate supported by organizations who have been supporting the three year to kind of stop and end the push and movement to get rid of 14(C) and go into a competitive integrated employment.  Understanding that all people with disabilities, no matter who they are, can work, should work, should be able to make a minimum wage job amount of money, equal pay, fair pay.  We work with those people, too.  We work with equal pay, fair wages community.

So, that's where I see us.  When I came here ten years ago, I didn't know what 14(C) was.  I see that changing where the disability community is not talking to themselves, right?  Like I said, we're members of the leadership conference on human rights and we're talking to unions.  Like I said, fair pay, equal pay people and that community is learning.  They always say farm workers are the least paid people in the country.  I would say, no you're not.  14(C) are paid less than the farm workers.  They're like, what are you talking about?  They didn't know what that was.  It's out there, shows like this talking about it.

So, I would have to say from where I came ten years ago, the needle has definitely moved to a change but again, just like on HR620, they need to hear us.  We cannot get complacent because those boards are set up and people want to change because we still have people who want to push that needle back the other way.  And so, that's the macro look at 14(C).  Where it is, the log and report you were talking about is on NDRN's website.  We have one we did years ago about segregated employment.  We're talking about updating the employment, but the fight is not over.  It's good to have organizations like yourself who do show the examples, there are great best practices out there to show that what we're saying is correct.  People ‑‑

>> JOYCE BENDER: What we're saying ‑‑

>> DARA BALDWIN: People no matter what disability they have can work.

>> JOYCE BENDER: That's right.  That is right.  Well, Dara, it has been a pleasure.  We have to have you back on, Dara, because, just because.  You just ‑‑


Speak the truth!  We have to have you back, Dara Baldwin.  And we end every show with a quote.  And because it's you, Dara, has to be something special.

"You must never be fearful about what you are doing when it is right."   said Rosa Parks.  This is, Joyce Bender, America's voice, where Disability Matters at  Talk to you next week with Tony Coelho.




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