Organizer's Forum

Advocating for the Disability Integration Act

Tuesday, November 15, 2016

Topic: Advocating for the Disability Integration Acy

Tuesday, November 15th, 1-2 pm Eastern time, 12-1 Central time, 11-12 Mountain time, 10-11 am Pacific time

  • Call in number: 1-515-739-1285
  • Code: 521847#

The Disability Integration Act (S.2427/HR.5689) is bi-partisan civil rights legislation which ensures that people who need Long Term Services and Supports are not forced into institutions and denied their most basic civil and Constitutional rights. With just a couple weeks of session left in this Congress, we need to act quickly to get as many cosponsors on the legislation as possible in order to propel us forward into the next Congress. Join us to learn about the bill, arguments to make with members of Congress and the intersectional implications of this critically-important disability rights issue.

Speakers:

Anita Cameron, ADAPT Activist and Blogger

Bruce Darling, ADAPT Organizer/Activist and CEO of Center for Disability Rights

Dominick Evans, Film director, writer and activist/CDR Media & Entertainment Advocate

Adam Prizio, Manager of Government Relations, Center for Disability Rights

To give you an idea of who joins our calls, if you are interested in joining on Tuesday, please fill out this quick form!

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Background

The Organizing Workgroup of the National Disability Leadership Alliance hosts these calls the third Tuesday of every month as a resource for disability organizers, in an effort toward building the organizing capacity of the disability community across the country. They generally follow the format of a Welcome followed by 2-3 experts in a given area speaking for a few minutes on their experiences, advice and challenges. The calls include a 20-30 minute question and answer period.

To ask questions via CART: Sign-in to the Chat function on the right side of the transcript and type your question. One of the call facilitators will read out any questions posted there.

Because we want to maximize the generously donated CART services, we will begin the call promptly at 1 pm and end the call promptly at 2 pm (eastern time). A few other reminders about call etiquette:

  • Say your name before each time you speak
  • Speak one at a time
  • Speak slowly and as clearly as possible

So you can mark your calendars now, Organizer’s Forums are held on the 3rd Tuesday of every month. If you have suggestions for call topics or presenters for upcoming topics, please email them to jlehman7@gmail.com or dcoleman@cdrnys.org.

Because we want to maximize the generously donated CART services, we will begin the call promptly at 1pm and end the call promptly at 2pm (eastern time).

Looking forward to talking with you all!

Jessica Lehman and Diane Coleman
Co-Chairs, National Organizing Workgroup

November 15, 2016

Organizer’s Forum

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>>CART PROVIDER: Dialing 1-515-739-1285 now and entering passcode 521-847 # now.

>>CART PROVIDER: On standby.

>> Hi Jessica, this is Diane.  [general hum of conversation in the background]

>> Jessica: Already having problems with our new conference line so give me a couple minutes folks to get things together and hopefully we will be fine.  [beep]

>> Jessica: All right, well why don’t we go ahead, we’re three past the hour.

>> Hi, Audrey here.

>> Jessica: Welcome everyone, my name is Jessica and I’m the Executive Director of San Francisco senior disability action and I Co-Chair the organizers forum along with Diane, Diane do you want to introduce yourself and NDLA?

>> Diane: Hi I’m Diane Coleman, happy to serve as Co-Chair with Jessica, for years now.  I’m head of Not Dead Yet [beep] with the National Disability Leadership Alliance, which is an alliance of organizations led by people with disabilities, including the Deaf, obviously represented on the call today.  As well as the national council on independent living, national federation of the blind and many other that bring the distillery voice front and center in the discussions of our issues.

>> Jessica: Thank you.  So the Organizer’s Forum, for folks who aren’t familiar with it, is a once a month call designed to expand community organizing in the Disability Rights Movement and in disability communities broadly.  We have a different topic each month, we’re always open to ideas, so let me know if you have any.  We do a mix of issue-based calls, like today and strategy or outreach kind of calls about how are we working with different communities or how to do a Town Hall Meeting or anything like that.  The call is captioned and you can log on and type questions, Diane will read those out on the call.  Oh and if you’re on, if you are in the chat window you can click near the top of the chat window there is a little people sign and you can choose a nickname for yourself, it can be just your real name so people know who is there.  I want to remind everyone to speak slowly and clearly and say your name before you speak.  [beep] And today is going to be extra important to not put us on hold, we’ve had problems with hold music.  So if you need to step away, please just hang up, you can always call back.  And you can also mute your phone if you are not speaking and we are pretty sure that is star 6 to mute it and unmute it.  I’ll apologize now for people coming on late, we’re trying a different conference line today which should be more accessible to folks, but that means it is going to be a bit of a learning curve while I figure out the codes, so please bear with us.  So the other thing about the organizer’s Forum, we know a once a month call is not enough for a lot of these topics, so we do encourage more on going conversation with list serve, on FaceBook, on FaceBook it is organizer as forum, two words like it sounds, please click like and you’ll see the messages from there.  And then we have a list serve which is organizers forum, all one word, at Yahoo group.com, if there is something that stands out to you, if you have a question, if there is something you want other people to hear, put that on FaceBook or list serve to encourage more conversation, thank you to CDR for hosting the website, we have an Organizer’s Forum, disabilityleadership.org, you can go on there to get transcripts and recordings from past calls if you missed it or you want to share it with somebody.  Let’s see, what else?  I think we covered it.  So [beep] today’s topic.  Oh what I missed is we’re not going to do introductions because — there is a lot of people on the call and we want to be able to go ahead and open it up to our speakers, but please click the link in the e-mail to register, so that we have some idea of who was on the call today.  So I want to say first that this has been a tough week for many or all of us with what’s happening with the incoming President and huge threats to people with disabilities, to people of color, to immigrants, to so many of us and, you know, many of us in multiple ways.  And so it’s good to have, have each other on the phone to be able to continue our important work together to be able to stick together and plan to fight together.  And given the threats that, it is all more important we talk today about Disability Integration Act and really figure out what can we do to push some really good policies forward in the next couple months.  So on that note, rather than saying more about the Disability Integration Act, which is today’s topic, I’m going to introduce our speakers and then let them talk more about it.  So we’re going to start with Bruce Darling, who is an ADAPT organizer and activist and CEO for Center for Disability Rights in Rochester New York and Anita Cameron, a blogger and also ADAPT activist, Dominick Evans who is a film director, oops sorry, my computer really doesn’t want me to see the speakers, Dominick Evans who is a film director, writer and activist, with CDR Media and Entertainment and an advocate.  We also have Adam Prizio, Adam, did I say your name right?

>>Adam: Yeah, that’s right.

>> Jessica: Okay, great, he is the manager of government relations.

>>Bruce: I appreciate you acknowledging the week we have had and the fact the work moves forward.  I think pushing forward in the work is even more important in this context.  I think it is reinforced for me that this is a struggle that we’re not just going to be given our rights, we have to fight for them.  So we’re going to talk today to help us do that, about the legislation, so Adam and I will be talking through what the legislation is.  I’ll start with some background, start about the legislation, he will fill in.  But the other thing that we wanted to do in this call was embed a discussion about the intersectional issues of DIA, right in the call.  There is a clear leader in the disability community and as a disabled person in the queer community, I know very well what it is like to have my special place and my, you know, basically time where they basically patronize me and put me in this one box and say now we’re going to talk about your issues.  What we’re hoping to do is embed the intersectional conversation in everything we do.  I know that’s how ADAPT has been doing it, I know Nick has been setting the pace for that as well.  So we want to make sure that happens today as well, I appreciate Dominick and Anita for joining us.  Anita is having some difficulties with the phone, so she may not be on, depending on how that goes.  Just some background, we have been working to end the institutional bias for more than a quarter of a century, so basically since we got the Americans With Disability Act we have been fighting to ensure that individuals are not forced into institutions and nursing facilities and I think a fair question is, well shoot more than a quarter century, I have been engaged in this myself the whole time.  Why is it taking so long?    And there are a couple of things we need to just acknowledge within the disability community, there is a certain amount of ableism that we’re combating, people even within our own community that think those people with really severe disabilities need to be placed separate and segregated.  And then there are those who say, it is just a small number of people, you know, it is not like this is a priority issue for the whole community.  I really feel like internally we need to confront that issue with ourselves, because as long as any of us are denied our right and our opportunity to be fully integrated, none of us are truly free.  And then there is the other part in terms of it has been, work we have done has been framed in Medicaid and it has been very easy for conservatives to say, I’m just being fiscally conservative, I’m not supporting this because I don’t want to be spending money.  You’re going to see some shift in our, in the dialogue, in terms of what we’re doing.  So we have a number of pieces of legislation over years that started with [general hum of conversation in the background] then moved all the way through until we secured community first option.  What we need to do is two things, create a Medicaid infrastructure for the community and then actually create the mandate so that every person had that opportunity.  When we secured the community first choice option in the Affordable Care Act we created the infrastructure we needed, but what we didn’t have was a civil right and at that point ADAPT pivoted with working in creating this legislation to frame the issue strictly as a civil rights bill.  Although a number of us were involved in the wordsmithing and the crafting of the language, I think it is important to note that this Bill was written from the lived experience, literally written from the lived experience of people with disabilities whose lives were stolen, whose freedom was taken away from them.  So this Bill actually honors their sacrifice and turns it into something really noble in terms of moving our movement forward to free our people.  So I feel like everyone whoever suffered under institutionalization or was at risk of it, needs to know that their experience has been reflected in this Bill.  So moving forward, so the Bill actually, it clarifies and strengthens the ADA integration mandate, so we do have homestead, that has allowed us to move forward.  But there are still gaps and limitations and clarifying and strengthening that mandate the Bill doesn’t amend the ADA, I know there was a lot of concern that this, it looks like a civil rights bill so it must be amended ADA, it does not do that, it does everything but.  And then what we do is we frame this, when we are developing the Bill we didn’t actually define institutions in part because we know that what they do is they change the names to protect the guilty institutions.  So if we said people should have, should be taken out of these facilities, all they would do is rename the facility something else and we would be just chasing our tail.  So we created civil rights legislation that says, basically no public entity, that means like a state or LTSF insurance provider, which is really important, so the manage care company, shall deny an individual with a disability who is eligible for institutional basis, community-based long-term services and supports, that enable the individual to live in the community and lead an individuals with disabilities on quality life or otherwise discriminate against that individual.

>>CART PROVIDER: At the bottom right click to have it keep scrolling.

>> Living in the community and leading an independent life.  That’s a real game-changer for how we are addressing this Bill.  So having it framed as a general civil rights Bill with that general is great, but we wanted to really put a finer point on it so following that general prohibition we have some very specific things laid out as specific prohibition, this is things we are all familiar with.  Whether state or public entity or manage care company, that mean this when they say I’m sorry you got your disability at the wrong age, or you are too young or too old or have the wrong type of disability.  We can’t sever you but you can go into the institution, that would be legal under Disability Integration Act.  Service caps or cost caps, are basically under the Disability Integration Act.  That’s because civil rights and constitutional rights, which is something we need to stress when we’re talking to conservatives, they are granted to all Americans.  Not just, there is no asterisk that says unless you are disabled and certainly no asterisk that says unless you are too disabled.  So we have no belief, we believe that no individual is too disabled to receive their constitutional rights, so that’s why we say no service or cost cap.  Basically another prohibition is we’ve all experienced a situation where a specific type of service supports not been available to someone, I am sorry, the assistance with the monitoring or instrumental activity of daily living, that assistance isn’t available so you need to go to the institution, that would be not providing a service that an individual needs to live in the community and lead an independent life would be illegal under Disability Integration Act.  Then we address some other things, so like there are settings where individuals are required to go, particularly under managed care we see this where they say you can get the intended services you need, but you need to go to this group setting and go to this program all day so you can go to the bathroom when you need to, that segregates people and prevents them from being integrated that would be illegal and specifically called out.  Requiring people to use informal support is also something, saying I’m sorry you need to have your family take care of you.  We understand where that is in Medicaid policy, but what that does is means you are tied to these family members and can’t be leading an independent life fully integrated in the community.  There are few other things, making sure we have adequate rights to attract, that’s a huge issue that people are notified of right to get out of institutions or notified to get out of rights to avoid going into an institution and we added up an extra one that just said, make a reasonable modification where necessary, because we want a sort of catch-all, when I go through that list what you hear is, wait a second, if it you want to get out of an institution you need to have a housing to be able to do that, so we added an additional prohibition on public entities that says failing to provide sufficient affordable accessible integrated housing that allows an individual with LTS disability to choose to live in a non-congregate setting, housing independent of services, failure to provide that is a discrimination, is a form of discrimination under disability legislation act, legislation any individual disability can live in the community.  With that I will turn it over to the community.

>>Adam: All right.  So I covered, sort of (background noise) okay, Bruce covered some of the statutory, really exciting thing that I’m going to talk through some of the more technical details of what happens when and how.  Those of you who were around for the ADA remember that there is a period of regulations, there is a self-assessment and a transition.  So we have the same thing here, because as Bruce said this does everything but amend the ADA, we modeled this closely on to the ADA, obviously informing the Bill with our experiences as a community in a quarter of a century since.  So there are two main federal agencies that will be overseeing this, the Department of Justice and health and human services through specifically the administration on community living.  And we wanted to go there because, as a federal office, ACL get this in a way that CMS may not.  That their mandate is much more aligned with the purposes of the Bill.  So justice has role in investigating and enforcing violations of the Act all those things Bruce talked about that they can’t do, probably through office of civil rights.  Health and human services is going to first of all conduct studies regarding institutionalization, which is exciting to me as a policy person, because that means that we will have better data supporting, I mean, everybody on this call knows and has seen the problems, how much better is it when the government is looking at the problems and gathering the data and reporting on the obstacles that our community faces?  In addition to those things there is a time line, so they have two years after the Bill is signed into law, to publish final regulations.  The States will have, basically 30 months, so two and a half years, to do a self-assessment and I think a lot of the self-assessment will be done sort of in anticipation of the final regs and then they will sort of finalize it in the six months they have after the final regs come out to look at sort of, you know, how does each — I’m sorry?  [general hum of conversation in the background]

>> So once regulations are put out, the States will do self-assessment and transition plan so this is, you know, based on ourself-assessment we’re going to know, this is how we’re going to get there.  This is what we’re going to do and.  To do that transition plan very quickly, because there is a ten year window where the government will pay for, will pay extra money through Medicaid for those services and programs that are identified in the transition plan.  So if it is not identified in the transition plan and the transition plan doesn’t get approved, they don’t get the money.  You know, if they wait eight years to do a transition plan, they don’t get the money for those eight years.  They all know states respond to financial incentives, or at least that they should.  The administration on community living approves or disapproves the transition plan and they can sort of go back to the drawing board and work out what is this, they need to change in order to address it.  One of the, address the disapproval.  One of the most exciting things from my perspective.  Punitive damages at a federal level, the disability can sue the states individually on their own behalf.  The Court can reward damages that are more than the dollar figure that you were harmed.  As a way of dis, as a way of slapping around and saying look you got to do this, this is a big problem.  What that means is people will have an easier time, people in all the states will have an easier time getting lawyers, the ugly reality is lawyers also like to get paid, without punitive damages it is hard to put, (muted) to get out of a Nursing Home or get their rights violated.  So we learned I think from not having punitive damages, that this is an important part of ensuring that our people are integrated into, into society.  And as well as the Attorney General, for punitive damages.  I’m trying to think what else.  Those are sort of the nitty-gritty details, but I’m happy, I’m going to stay on the call and happy to answer questions about them.

>>Bruce: Okay, so at this point I think we got both Dominick and Anita and we’re going to talk about some of the intersectional issues related in this issue.  Anita, are you there?

>> Jessica: Bruce, I don’t think we got Anita yet, but I’m going to try one more thing.

>>Bruce: Okay.  We apologize for these technical difficulties.  [LAUGHTER] But we are resilient, we can survive anything.

>> Jessica: Is Dominick going to speak next or are we waiting for Anita?

>>Bruce: Dominick and Anita both should be on the call right now, I’m just not hearing them, they may be muted.

>> Jessica: I may have messed things up, I was trying to get rid of the background noise.

>>Anita: I’m sorry, I didn’t realize I was muted, running my mouth, I didn’t realize I was muted.  I’m going to start off talking a little bit about the intersectional issues, wanted to start out with, and what I’m going to it is I’m going to concentrate, although I fall into a lot of intersections, I’m going to concentrate on the effects, on reporting problems and opportunities for people of color.  And so I’ll start out with one importance is that a person can hire and train their PCAs who are safe and are culturally competent and the workers are more experienced and committed and whom home health agencies and other agencies can’t discriminate against the clients because of race or perceived cause of disability or the severity or complexity of the disability.  And that often falls a lot on people of color.  Some of the problems for people of color, right now, is the whole racialized medical care.  Another is the perceived cause of disability for people of color, particularly young men, so if a young black man presents with a spinal cord injury most likely it’s going to be thought that, that person was engaged in some criminal or gang activity, that leads to racism from hospital or Nursing Home or other staff.  Another issue is lack of access to care and the lack of education on the civil rights in the community or to receive adequate care.  Often you don’t see, there’s, there are more young people of color in nursing homes, living in nursing homes than seniors, because we tend to, you know, take care of our own elders, but it’s often and usually due to racist decisions that, you know, land people with disabilities of color into nursing homes, particularly young men.  We are more likely to be poor and so at this point in time if we live in a State that has very little long-term services and supports, often times we are too poor to move to another State where we can get ours, so that’s some of the problems that disability integration Act will address.  Opportunities for people of color, one of them, one huge important one, is to educate our legislator groups, like the Congressional Black Caucus, some of these others, community organizations on the importance of disability integration Act to communities of color.  And to educate our elder groups of people of color, about that and educate faith communities, because they are, particularly African-American.  So if we, if these groups of folks are being educated and then can go to their members of Congress legislators and all and educate them on the importance of the disability integration Act, then we can probably get more support than the legislator.  And so I’m going to leave it right there and have, you know, have Dominick talk about LGTB.

>>Dominick: Yep, yep, hi everybody it is Dominick Evans and I wanted to talk about the DIA in terms of LGBTQ people and so we know that for LGBTQ, you know, people of color as well, that nursing homes are not, you are stuck with whoever is working with disabilities, they could be racist, they could be homophobic, they could be transphobic and you don’t have a choice in that.  And we also see that with the home health care agencies, a lot of people have employees, employees and workers.  So you don’t get to choose who your workers are in these situations.  A lot of times they are receiving very low pay, they are not motivated to be here because of that, they are not reliable.  We see a lot of abuse in these situations and we also see a lot of discrimination against people with complex disability needs.  Discrimination on the basis of gender identity, sexual orientation, race, ethnic origin.  So these are not — for disabled people, or LGBTQ or any other additional marginalized person.  Further marginalized people face even less in the settings that they are stuck in.  So if you are LGBTQ person who American, you may face discrimination of care and before sent to a Nursing Home or other institutional setting, because if approximate you come out later in life you had a family, your children may not [speaker off mic] now that you are older you may be divorced, you may have lost your partner and now you are saying okay I’m going to [speaker off mic] and kids who may be have self-obligated to take care of you.  If they have the notice about you, putting you out of my life because you don’t need, LGBTQ.  For younger disabled LGBTQ folks, the parents may phone you — (muffled) you may be educated because you are young or may not have had much, resources to understand your rights.  If you are a youth you may not have been taught this is an option, you may not have the guidance to know, this is especially true for LGBTQ disabled youth if they have, for LGBTQ.  We don’t hear about it spoken about in terms of disability, but a lot of the kids on the streets are also disabled.  So if you don’t know your options, you don’t know you have your parents disown you, where do you have to go?  This provides an option for you to stay in the community, you are not going to be stuck in, be forced into a Nursing Home if you can’t care for yourself in these situations.  And right now trans people are forced out of the closet every single time they hire a PCA.  Especially if their bodies do not match their gender identity.  I know that, as a trans person when I hire someone I have scars on my body, my body, you know, there are signs that I am trans.  So it’s — (muffled) I hire someone.  I don’t have to do that, but I have to.  I have to make sure that person is — with the DIA, if you are able to live in the community.  Being able to, to choose the people you hire with the ability to have consumer directed care options.  And so if you are able to choose who works for you, you are able to choose someone, or better able to, hopefully choose someone who is safe for you and for your body.  LGTB people, so if you’re living in an Evangelical or religious situation and LGBTQ you will lack these in care.  If you are stuck in a situation, you are disabled, you are LGBTQ, you are not going to have the resources for [speaker off mic] more likely going to end up in a Nursing Home.  This is a real threat for LGTB individuals to be stuck in institutional settings and not be able to get out in the community.  Because these are not safe, it is a real risk to mental health.  It is a real risk to physical health.  So — are you there?

>>Bruce: Okay, you faded a little bit at the end, Dominick.  Are you jumping back in?

>>Dominick: Sorry, sorry, oh I was so concentrating on is there an opportunity for me, I you know, I also identify as LGTB and so obviously, you know, what Dominick has been saying, particularly about, you know, LGTB, you know, some of that crosses over, you know, into, to me, you know, um that especially some of the care and the touching of my body and, you know, me potentially having to disclose, you know, that I’m a lesbian and worry about, you know, the whole safe thing.  And so that’s one of the things certainly that’s important to me as a lesbian, that Disability Integration Act, I will have more opportunity to choose who, you know, who sees or touches my body outside of my family.  That’s pretty much it.

>>Bruce: Great, as you said Anita, when we were discussing the preface of the call, the DIA will help us to have more cultural and that means care workers who know how to care for black bodies, black hair, you know, other people of other marginalized statuses people who are not homophobic and transphobic, who are not dangerous to us.  So and who don’t care, you know, what your body looks like or, you know, if your body matches your gender.  So it, it’s safer for our communities to have the DIA.  So reaching out to organizations in our community to say hey, black disabled people are a part of your community, trans-disabled people are a part of your community.  So why are you not helping us promote the DIA and benefits people in your communities.  That’s an opportunity for us that’s disabled, LGTB, after this, to reach out to these broader communities and say hey why aren’t you supporting this?  It is helping people in your community and why aren’t you, you know, looking at disabled LGBTQ people or disabled people of color to be a part of your community?

>> Well and I think some of what we’re wanting to do in this conversation, there are other intersections that are important, I think we talked a lot about how people are marginalized, older people are, I think we have a lot more comfort about that, a lot more language and cultural barriers people have in accessing services.  I think about a project that I was looking at that they were describing as cultural competence but what they wanted to do is teach the attendants to speak English so the nurses could talk to them.  It was the definition of cultural incompetence, everyone I was talking to was thrilled with this project and what it was further marginalizing the Spanish speaking individual in a major Metropolitan area, New York City, not like this was some place where you couldn’t find nurses who spoke Spanish.  Basically what we’re wanting to do is highlight how some of these intersectional pieces are important to DIA so we can center the voices of multiply marginalized people in the conversation which would help us embed ourselves in the progressive movements so other communities can help support us.  Because frankly we struggle sometimes as folks living intersectional lives, in making those connections of the I know queer folks, there is some ableism, that is embedded in that community that really disenfranchises us.  The thing about the Bill and, even with the change in Congress, the work moves on, some of what you are seeing us do is pivot in our language.  It is, we haven’t actually secured um bi-partisan support for the Bill.  And just, I didn’t, I had to jump off to help Anita and get on to the call, so I didn’t hear whether Adam talked about this or if I was —

>>Adam: No I checked that the, nobody on our Bill has lost, lost an election last week.  So everybody that, who is a co-sponsor is still a co-sponsor with the exception of um formerly Congresswoman Duckworth becoming senator —

>> Introduced in the House by a republican about basically to bring a family together and it addresses the constitutional rights and just as a point republicans are big on the second amendment, but right to be integrated in the community and not be locked up shows up in two different places.  So we have at least twice the amount of energy behind that.  Maybe there isn’t depth to support, basically our plan is to put people out there on the rhetoric, say this is what you say you support now back that up.  And truthfully we picked up representatives [speaker off mic] which was not a person’s co-sponsored any of our previous legislations, so optimistic about the ability to make that constitutional argument.  But what we need to do is get people on this Bill.  So the next test in moving forward are identifying and securing co-sponsors, I’ll ask Jessica if we can send out a link following this call or posted to the FaceBook page, a link where you can actually see some of the people targeted.  What we have is basically 19 people in the House and 9 people in the Senate today.  We have far more support for equality Act than we do for Disability Integration Act, democrats can step up, republicans as well because this is a constitutional right.  Anything, any of the other speakers want to add in before we, I think open it up to questions?  Hearing none, Jessica, I guess I’ll turn it back to you.

>> Jessica: All right.  Can you all hear me?

>> Yep.

>> Jessica: Okay, sure, I wasn’t sure, first a huge thank you to all the speakers, that was really helpful presentation on what it is, what needs to what and all the implications.  Let me make sure is unmuted who wants to speak, so one second.  (unmuted) Okay.  I think everybody is unmuted.  So yeah we can go ahead and open it up to questions, hopefully it won’t be too loud.  I will invite people, if you are not speaking, particularly if you are in a noisy spot, please hit star 6 to mute your phone and you can always hit star 6 again to unmute yourself.  So you can ask questions over the phone or type them in on the chat window and Diane will read those out.

>> Hi, this is Sue, [speaker off mic] I have a question about um, maybe just a short comment.  Chris Gibson introduced the Bill in the House and he is not coming back this fall.  He was replaced by Claudia Tenney [Name?], when she was down here in Bimington at a debated we were able to ask her the question about whether or not she would support the, this Bill.  And we pointed out that it was in produced by Chris Gibson, she said Gibson was a friend of hers, held him in high regard, would certainly look at the Bill.  She has not been particularly progressive in service in the New York State assembly.  So I guess that would be kind of, we’re tossing that out there and asking for some help here in trying to reach out to her.

>>Bruce: Okay, Sue, that’s a great comment.  Okay so we knew that Gibson was not going to be coming back to Congress, okay, I like to, okay I probably shouldn’t be saying this, I like to think of him as a Gateway republican, so it was great.  He allowed it to be, for republicans to get on the Bill, but on the right committee to move it forward.  So we’re really working with Gibson’s office and are hopeful that representatives [Name?] who has a history of supporting our, our rights as people with disabilities, will take the lead on the House side.  So we’re working on a strategy for reintroduction, but I want to reiterate for everyone what will get us propelled forward on people on the Bill today.  That even though we’re in the end of this Congress, getting as many folks on the Bill is important.  Not just important in terms of moving the legislation.  There is a lot of conversation about block grants now.  This would establish principles that could be incorporated to come along to what our rights are for community integration.  So great talking with you, thank you.

>> (sounds child babbling)

>> Other folks?

>> Hi this is Denise, from the civil rights center, I was just wondering, will the DIA be a nationwide in the sense that if you choose to move from one state to the other, will it all be the same and particularly the pay rate?  Or will those pay rates be determined via each State?  For example for this?

>>Bruce: That’s a great question.  So it is federal legislation, but it is a civil rights Bill, not a program Bill.  So what it says is, there is an issue right now.  So if you move from one state to another state and we see this a lot with veterans who have a family member with a disability, because they are redeployed and move around.  The basically, the child or person loses services in one part of the country and has to reapply and get on a waiting list.  DIA says there should not be a waiting list for services and support, because no one else has a waiting list for constitutional and civil rights to live in the community.  But it doesn’t actually create a nationwide program.  It focuses on the individual as a civil rights, having access.  So every state would be required to make sure there are adequate rates to pay for attendance.  What that would look like is going to be different from state to state and potentially within a state.  I know that within New York what you need to pay in New York City and Long Island probably is different from what we actually need to pay up in Rochester and —

>> Right.

>>Bruce: One of the things that’s difficult for folks to wrap our head around, we’ve been talking about programs, this is about people and rights not programs and services.  That means we can talk about our core experience of being denied access to services as a right.

>> If I can jump in and elaborate on that a little bit.  What the Bill language says, it doesn’t establish any kind of like a nationwide formula for determining what workers should be paid.  But it does say that it is discrimination, if workers are paid so little, that you can’t get workers, right.  If you move from New York City to, you know, somewhere in rural Nebraska, your cost of living probably goes down, but you still have a right to a worker, you still have a right to receive those services and the State would have to set, you know, an adequate rate to pay for those services to ensure that you can live in a community.

>> I see.  Okay, thank you.

>> Jennifer: this is Jennifer in Texas, I was wondering where I would find statistics about the African-American community that you kind of touched on Anita, so when we outreach to community groups we can be educated about specifics.  Because I know that we’ve got some obviously there is some disproportional, I mean, people are experiencing discrimination on much higher rates and minority groups, but it would be helpful to have specifics in our areas, if I could find them.  So um where have you looked?  [beep]

>> I don’t know if Anita is muted — [general hum of conversation in the background] Anita you there or?  Okay Jennifer — go on.

>>Anita: No, go ahead, I just got myself off mute.  I know Bruce has some statistics and um yeah some actual, actual figures, you know, I was just, you know, done a lot of this and you know, you know, so I was going on, you know, what I’ve experienced, you know, in the field and health and transition, people out of nursing homes and stuff like that.  But there are actual statistics.

>> We can share, what we can do is there is a study that shows that people of color are disproportion nationally denied access to LTS, I don’t think of any of us with any experience with this would be surprised, if you walk into a nursing facility, row into a nursing facility, there are a disproportionate of young people of color than other people in the facility.  There are studies, what we can do is share the link to shows studies with Jessica.  We can send it out, make sure it is posted on the disability website, send out [speaker off mic] it is a great question, Jennifer, thank you.  Honestly, just a call-out to Texas folks, worker wages is a huge issue there, part of a reason this is a huge issue in general, but it is the last of support from the Department of Justice in making, for that.  It really reinforces where that makes the case for DIA.  Other questions?

>> This is Doug Town with Disability Relations Group.  Yeah I have a couple of, I have a couple of, I guess maybe process questions.  First of all, has does anybody know who is driving disability policy in, in Trump world?  I ask that question because if you look at the responses that Trump gave to the ramp up Presidential questionnaire, clearly somebody is writing for him assuming that this isn’t all plagiarized.  Because he answers to the question.  And I have been trying for a month or two to find out who it is that’s working for him on disability policy and can’t find anybody that will own up to it.  So that’s a question I think going forwards that we need to answer.  We need to find out who that person is.  Also, has there been any conversations with the speaker’s office about this Bill and do we have any idea where Ryan is on this?

>>Adam: This is Adam, I’ve reached out to speaker Ryan legislative staffers, gotten no response, it is on my list to keep reaching out.  I haven’t reached out since the election.  But I, I’m inclined to believe, you know, as strange as that may feel, that Ryan would be a worthwhile person to engage on this issue.

>> I don’t disagree with you, it just came across the wire that he was unanimously reelected speaker.  So —

>>Adam: You a unanimously, huh.

>> Doug: Unanimously in the republican pocket anyway.  He gets to stay as speaker.  So it is worthwhile and I think Ryan might have a listening for this, given his concerns about um for about, you know, he is a constitutionalist.  So I think, I think you got a listening there.  I don’t, you know, and until about 60 days ago, I’m a lifelong republican, and I left the party because of my party’s choices.  But I’m not, I have no idea, and I don’t know whether anybody has any idea where Trump is going to come down on this kind of thing.  Going to look at it from a business point of view.  So we need to have a business argument ready for that debate on this issue.

>> That’s a great suggestion.  They clearly have someone doing their writing for them, because honestly when we, the initials wrapped to the platform the republicans actually mentioned us more times than the democrats.  The democrats had to go back and edit in a bunch of times.  Something going on there, I don’t know if anyone knows who that is.  I do think —

>> That was within, that was within the party.  I’m wondering who is, who is working on disability in, inside Trump world because clearly their answers to the ramp up, I don’t know if anybody saw that, their answers to the — pretty good.  And it was very disability speak and very disability friendly, you know, the proof will be in the pudding so to speak.  But somebody wrote this that at least understands our issues.  And I have no idea who that is and neither does anybody else that I have talked to.  I talked to all the likely suspects in Washington and nobody, none of them, nobody seems to know.

>> Well if you hear let us know.  I think from our — oh, sorry.

>> Doug: I will.

>> Thank you.  And I think this, a lot of people feel unsafe and stressed because of the vicious campaign cycle we were just through.  It does, he did promise to be the President for all of America.  That includes Americans with disabilities and I think some of what we need to do is put that out there and hold this administration accountable for actually doing that piece of what they said.  Highlight that piece and maybe we can, you know, put ourselves in the position basically where they need to demonstrate that they are going to not be the, the worst of our fears by doing some of the things we need to do.  I think that’s the charge to our community.  But when it comes to the disability integration Act the very first thing we need to do is get people on this Bill to build some momentum.  That will be what gets us — [speaker off mic] next Congress.

>> Jessica: I actually wanted to ask about getting these co-sponsors on, that was just really helpful and I apologize if I missed, this other kind of call planning things.  But is there information on one of the websites about like a sample letter or a phone call script and specifically what you want people to do.  Like is it writing letters and making phone calls, is there something else —

>> actually really the visits and calls to the office.  The list we have online from July actually gives a specific message for each of the high priority people.  So it’s highlighted to include people who have previously spoke, co-sponsored legislation.  It has been tailored to address folks who may be on the equality or LGBTQ folks who are not on this Bill.  There is messaging there, I think folks can just use that as the base and basically talk about why this Bill is important and why they need help for folks signed on.  There is a short list of people still like a bunch, it is a long list, but we can get these people on pretty easily.

>> This Jessica again, do you want people to call their own representatives or is there key people everybody should be reaching out to?

>>Bruce: That’s a great, I think really the legislators are going to listen to their own constituents, this is where we’re really looking for help on the ground because there are some places where we have folks who are pushing really hard and there is a consolidated efforts to move the state its forward and call out to Texas folks who are on like every single call about DIA.  But there are other parts of the country where we have lots of people who should be on the Bill and we don’t have any, looking at California and Maryland, are two States, Delaware, these are States where we should have people on the Bill and there is no one on at all.  Far more places we don’t have people, everyone needs to focus on their own, but we all have senators we can lean on as well.

>> Jessica: Great.  Well thank you for that, unfortunately we have to wrap-up, we’re at the end of the hour.  So again a huge thanks to our speakers for the really excellent and important information.  I want to urge people again to take action on this issue.  Thank you also to our captioner for keeping the call accessible and to national leadership alliance for funding that.  And I do want to announce our next call, it’s actually going to be Sam Crane from artistic self-advocacy network, on access as far as what has happened with it since it has passed and how it is being implemented.  We are moving that a week earlier in December, so normally we have it Tuesday of the month — [general hum of conversation in the background] in December because of the holidays it will be on Tuesday, December 13th, the second Tuesday, same time, 1 to 2 pm, eastern time.  And I just want to urge people again to please put some comments or follow-up on FaceBook or the organizers forum list serve, particularly when you reach out to your legislators say hey here is what I did and here is what we found out about or here is something that stood out to me or here is a question I have, so we can keep the momentum going.  I think we did it.  Thank you again to everybody.

>> Thank you for organizing this.

>> Jessica: Thanks Bruce.

>> Bye.

>> Bye.  [beep] [beep] [beep]

 

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