Keynote: Rachel Patterson, Director of Disability Policy, Domestic Policy Council, The White House

Ladies and gentlemen! Good evening! At this time please welcome to the stage the President and CEO of the American Association of People with Disabilities, Maria Town! Yeah!

MARIA TOWN: Hello, everyone, good evening. I know that this session is between all of you and the networking happy hour. I promise that you are  that your patience will be worker worth it. I serve as the President and CEO of the American Association of Persons with Disabilities and I have the distinct honor and pleasure of kicking off our celebration this evening of the 50th Anniversary of the Rehabilitation Act, and the pleasure of introducing Rachel Patterson, the Director for Disability Policy in the White House Domestic Policy Council. The Rehabilitation Act was radical. It was the first piece of federal legislation that extended Civil Rights to Persons with Disabilities. It is said that federal agencies and entities receiving federal funding could not discriminate against people on the basis of disability. I actually have always found it funny that the Rehabilitation Act said that as disabled people we don't need to be rehabilitated. We can come as we are and deserve access, and as much as it was radical, it was also foundational.
The Americans with Disabilities Act and many other federal Civil Rights standards around disability are based off the Rehabilitation Act. Internationally the U.N. Convention on the Rights of Persons with Disabilities would not exist as it is without the Rehabilitation Act, and the Rehabilitation Act wouldn't exist itself without advocacy and without collaboration between service providers and advocates.
We could have actually been celebrating this anniversary a year earlier, but President Nixon vetoed two different versions of the Rehabilitation Act and it took Persons with Disabilities led by the late great Judy Human 

[Applause]

That's right! Protesting in front of President Nixon's offices in New York City to get him to sign this bill. It took people invested in accessible technology to really figure out what the Rehab Act, Civil Rights nondiscrimination act really meant in real terms. And we're in an exciting moment right now, which Rachel is going to tell us about, because many components of the Rehabilitation Act are being updated today for the first time in this landmark piece of legislation's existence. So without further ado, again, it is my honor to introduce Rachel Patterson, the director of disability policy for the White House domestic policy council that advances the President's domestic policy agenda and Rachel has an incredibly difficult job. She is responsible for not only embedding disability priorities in that agenda, but ensuring that disabled people are represented within every aspect of it. So she's laughing, but I know from my own experience in the White House that she has  she has had to become an expert on a great many issues very, very quickly and then the next day have a whole different set of issues presented before her. Prior to joining the Biden administration Rachel worked in many different advocacy capacity, including for the epilepsy foundation and for the association of University centres on disability and I will say that I'm very grateful for her work at DPC, but I also miss her in advocacy coalition meetings and your wisdom, Rachel, has been deeply appreciated by so many of us.
So with that, please give a warm welcome to Rachel Patterson.

[Applause]

RACHEL PATTERSON: Thank you so much for having me. Thank you, Maria, for that introduction, I'm so glad to call Maria my friend.
And I'm glad to be here with all of you. Like Maria said, I'm at the White House Domestic Policy Council, we're the group that drives and implements the domestic policy agenda of the President. President Biden is the first president to have a disability focused role on the Domestic Policy Council, I think that's pretty exciting.

[Applause]

He shows his commitment to disability and disability rights. It is exactly like Maria said, my job is to drive disability specific priorities and also to make sure that disability is embedded in each and every one of our domestic policy actions. There are a couple of us on the council that have a sort of population specific remit. Oftentimes we have lots of trackers and spreadsheets and things, and it will say which agencies were responsible  we're responsible for, for those of us, like me, the disability staffer, native affairs stacker, LGBQ staffer, it basically says all ever them. So we know that disability, it touches all aspects of human life. So sometimes folks ask how I got into disability. That's a story that starts with my sister who had a developmental disability and a number of medical concerns, but also includes my own story where I developed a disabling chronic illness in my early 30s. I was already  I was happy to already be a part of this community and so I could understand how to advocate for myself and push forked things that I needed, like giving this speech sitting down, even if I worked in a different field, I wouldn't have known that I could have asked for that. I'm really grateful for all of the advocates that came before me, all of the partners that I get to have. Because of my experiences, and because I'm growing up with my sister, I come in to this role no, this job in the White House with three truths that I keep in mind. Disabled lives are worth living.
Access means dignity, and we make gross in disability only through advocacy so as you have heard, I have said a couple of times, we just celebrated the 50th Anniversary of the Rehabilitation Act. I recently had to plan an event for the Rehabilitation Act and I came to the conclusion that it did too many things. It did too many things, I couldn't get them all in one event, it was a big problem. Isn't it great that it did all of those things.
Probably the most prominent is section 504, our nation's first disability Civil Rights law, first nondiscrimination law, where Congress wrote down that anyone receiving federal funding couldn't discrimination based on disability. Like Maria said, this is radical.
As we know, not without controversy, President Nixon veto it had twice and then when he did so, advocates stopped traffic in New York City, led by Jude Y right on Madison avenue, if you Google it, you can read the original Article talking about stopping of traffic here. We were pretty lucky to have President Biden in the Senate, he cosponsored the Rehabilitation Act in February of 1973, that was his second month as a senator. I think showing again that commitment to disability rights. In September, after two vetoes, President Nixon finally signed it into law. So section 504, but that's not all, that section 501, 503, which are focused on employment, creating the U.S. access board, which sets technical standards for accessibility and it created the national council on disability which wrote the first draft of the ADA. The Rehab Act set the stage for the ADA and the convention on the Rights of Persons with Disabilities in more than one way, both by being the first disability Civil Rights law focused on the federal government and the ADA came next, focused on state, local, employment, public accommodations, but also by giving us the tools to move forward, to write the ADA, to write the technical standards on what accessibility means. Then later on, Congress added section 508 focused on accessible technology, very familiar to all of you, and then section 511, towards competitive integrated employment.
I'm going to go back in time a little bit, so it is still the mid-70s and so President Nixon finally signs it into law, but then the Nixon administration, the Carter  the Ford administration, even the Carter administration were reluctant to issue the regulations that actually gave it teeth that put  even the Carter administration, in the beginning of 1973, they wanted to study it. They weren't quite sure and a lot of it was the same stuff we hear today, wow, this is going to be really hard, are we sure, people probably don't treat disabled people that bad, maybe we don't need this, you know you kind of laugh there. So advocates took action again, occupying federal buildings W the Department of Health, education, welfare, including again the famous 504 sit ins in San Francisco again led by Judy occupying that building for over 20 days to get the regulations implemented. Progress doesn't happen without advocacy. In September, it was very exciting, that we released updated regulations under section 504, under the Department of Health and Human Services. So health education welfare, broke into two different agencies. Health and Human Services is one of them. It does extraordinary things. People with Disabilities continue to face discrimination in medical treatment. We have all heard stories of people denied organ transplants, lifesaving care, based on disability alone. The name of their disability, their diagnoses. The regulation that was proposed banned that practice. Because it is in section 504, it applies to all hospitals that take federal funding like Medicare, that's basically all of them.
It also addresses the crisis standards of care that we saw a lot in the COVID19 pandemic, especially in early days when we expected demand at the hospitals to out strip supply, states and hospital systems had these policy, many of which had not been in the books for a long time, we hadn't paid a ton of attention to them, that had again blanket denials or blanket refusals, if we reach the situation, here are the people who will not get care, and it is Persons with Disabilities. A lot of us, I was in advocacy at the time, we're successful at fighting back against those, and with HHS, under the leadership of President Biden, secretary Becerra, writing into the regulation that those are not allowed, so that in any future situation, we're prepared.
That's not all. It also includes requirements to have accessible medical diagnostic equipment, People with Disabilities are not getting healthcare because the equipment isn't accessible to them, for example, CDC has good, bad data on the rates of breast of women that use wheelchairs because the mammography machines require a women to stand, not sit, no reason why, no technical requirement, it is just how they're built. So these rules would say, that hospitals and doctor offices had to have a certain amount of accessible equipment.
It includes requirements on web mobile app and kiosk accessibility used which healthcare entities, and it had protections against discrimination and child welfare for parents with disabilities so that they don't lose custody or have termination of parental rights based on the disability alone. A lot of issues that still purr said our health, human services system, based on stereotype or bias over what lives are considered worth living.
Finally, it has stronger requirements around community integration and the right to community living.
The President is very committed to community living. In the American rescue plan, passing this March, 2021, he provided enhanced federal funding that will work out to have 25 billion for home and communitybased services in Medicaid. States are using this to expand services, reduce waiting lists and explore new service models, including figuring outweighs to use technology in the provision of communitybased services. I hope that's something that the folks at this conference are able to talk about and to know more about than me.
Making sure that that technology is accessible and usable. In the effort around building build back better, which was a significant piece of legislation, President Biden asked for another 400 billion for home and community based service, that didn't come to fruition but he continues to request at least 150 billion in his budget every year he sends to Congress.
In April, the President signed an executive order on increasing access to high quality care across the life span from early childhood to the daily needs of Persons with Disabilities to improved care for older adults. We also took action to make it easier for children in schools to receive the healthcare services they need funded by Medicaid. When it comes to employment, the President wants the federal government to be a model employer, again, that's section 503 of the Rehab Act, always comes back to the Rehab Act. In 2021 he signed an executive order on diversity, equity, inclusion, accessibility in the federal workforce. As part of this, federal agencies are writing Strategic Plan, submitting plans to us in the White House on what actions they're taking and that includes making the Internet and intranets more accessible and maximizing the physical accessibility of their workplaces to make sure that the talent that we have serving the American people in the federal government looks like America, including People with Disabilities. But, we know that People with Disabilities continue to face high rates of unemployment, receive low wages, and are segregated away from traditional work. This is something else that we are taking action on. On the anniversary of the Rehabilitation Act, acting secretary sue, acting Secretary of Labour, Julie Sue, she had a comprehensive review or announced an implementation of a comprehensive review of our current policies that allow People with Disabilities to be paid less than the minimum wage.
As I said at the top, access means dignity, and in July we had a rule requiring wheelchair accessibility on plains with over 125 seats, these are the single aisle aircraft that probably a lot of you took to be here today. The thing that I think is great about this rule, wheelchair accessibility, absolutely, really, really important. It also addressed the size of the online rest room, saying it has to be something that you can enter with an attendant. This means it will be useful to people with all sorts of different kinds ever disabilities beyond folks who use wheelchairs, because they may need an attendant, even if not a wheelchair user. In July, the U.S. access board also issued a final rules on public Rights of way that is the accessible streets, sidewalks, crosswalks, and the Department of Transportation has already said that they plan to pick these up and implement them as the enforcement agency.
Through the bipartisan infrastructure law we're investing 175 billion to improve our legacy rail systems, this is in New York City, Chicago, that are still not accessible to People with Disabilities despite the ADA applying to them for quite some time now. In addition to investing the money, the Department of Transportation is telling states and localities and contractors that Persons with Disabilities need to be part of their hiring plan. So while we make our nation's infrastructure more resilient and accessible, we're also trying to make sure that Persons with Disabilities get some of the good paying jobs that we're creating.
Finally, I don't have to tell you all, in July, we issued a proposed rule regarding the online accessibility web and mobile app accessibility, by state and local governments. So this is under Rachel Petterson, Director of Disability Policy, Domestic Policy Council, The White House, the ADA, and most of the central issues are provided by states and locals, that's where people's needs are really met for education, voting, transportation, recreation, that's all provided by the state and local level. Of course, the ADA has applied to state and local governments, and whatever website that they had since 1990, this rule will provide technical standards to help the federal government and their residence, local folks with disabilities hold the state, local governments accountable for providing the accessible services. And throughout the year, we have been conducting acrider by Congress, a comprehensive review of federal 508 compliance, that review is ongoing. Agencies had to submit the White House by August and the report to Congress is due in December. Getting back to the theme that progress happens through advocacy, when that report comes out, and it identifies areas for improvement, I hope you hold us to it. I hope you read it, and if there are timelines, say great, when are you going to do this? When are we going to take these actions? Government has the power to make lives better. That means that the government has to be accessible. This is the place where we don't leave anybody behind. We decided that 50 years ago.
In the way that services are delivered today, that means that the services, the way that services are delivered today, that means that the technology has to be accessible because that is how services are delivered. As the President has said about disability rights, it is about basic decency and fairness. In my line of work, we have these small windows of opportunity to get things done, and this is one of them.
So I hope that we hear from you. I hope you submitted your comments on the Department of Justice web access rule, I hope you read that report when it comes out, I hope we continue to hear from you on what's working, what's not working, what needs to be made better, and especially if you're a vender, what is easy to make accessible these day, what's not so hard, what can technology provide, and where can technology take us today. So that is my speech.
Thank you for your time. I think we have some time for question, and I would absolutely love to hear from all of you any questions that you have, comments or thoughts.

I'm Karen, thank you for everything that the Biden administration has done, a phenomenal job, one area that the deaf and hard of hearing community has been pushing the Department of Justice on for at least a decade, probably close to two, and that's updating its 911 rules under Title II, which still rely on TTY access. I wondered if you could speak to that, whether there is anything that the White House can do, it has become truly an emergency situation because only about half of the states currently have text to 911 or a couple of safety answering points, only accepting texts to 911 and approximately half of the PSAPS of the country, the away that the situation is, the FCC requires all wireless carriers to transmit text to 911, but again, only 50% of the country's PSAPS or 911 centers can accept it. As a consequence, people who are deaf or hard of hearing, they do not have direct access as is required by the title 2 rules of the ADA to northbound. I wonder if you could speak to that.

RACHEL PATTERSON: Thank you. That's incredibly helpful. It's odd being in a policy job moving from advocate and historian advocacy when I could say whatever I wanted. I can't provide any detail on that. I really, really appreciate the comment. Thank you for raising that, it is very important. Don't deter that from asking questions.
(Laughter).
Any other questions? We have one up here.

So hello, my name is Christian, last name is Vogler, I work at Gallaudet University, and I have a lot of experience, you know, with policy, so I wanted to tell you that I really appreciate your work, explaining and what's going on with policy. Now I'm going to change hats.
My personal experience, so we do have issues with rates, obviously organizations are breaking laws, and it is not completely evidence that the organizations are fighting for us. I find it hard to find the enforcements, I feel it is very challenging, and if you don't have an organization behind you to support and back you up with the legal system, and if you have to pay extra, because it is a very big disadvantage and people that could afford to pay to fight, that's typically who wins, people that can't afford it, typically are stuck in that situation.
So I'm just wondering what your thoughts are about that.

RACHEL PATTERSON: Sure. I have a clarifying question, so about  at the very begin, I couldn't tell if you said rights or regs.

Regs?

Rights.

RACHEL PATTERSON: Okay. Thank you. That's definitely a concern that I'm familiar with from my work in advocacy, when we were  when I worked at the epilepsy foundation, we had a legal defense fund, and we would hear  people would call in, desperate, with terrible stories of things that are so obviously illegal. We would try to help them out, as much as we could, but we knew if these are the folks that are reaching us, these are the folks who were kind of in the know. You know, there is a whole world of people out there who are not being reached.
So some of the things that we have done in the Biden administration, is request additional funding for the offices of Civil Rights, in health, human service, in the Department of Education, for example, so that they can engage in more compliance actions, we have that one example.
But it is absolutely a concern, how easily the school districts continue to break the law.

Thank you so much, Rachel. I loved hearing about the last 50 years, and learning so much about what is going on in the present day.
Just looking back, so much progress has already happened. First, it is never, ever enough, but looking forward at the next 50 years what are the top three priorities that you see government prioritizing?

RACHEL PATTERSON: That I see government prioritizing or that I would like to prioritize? I will start with what I would like to prioritize. Within disability, I think the way we be structure the access to home community based service, the income and asset limits and SSI and the state variation, it is too hard to access services right now. I would also like, you know o to build on the earlier comment about rights enforcement, if we could have stronger rights enforcement, for things that we passed the law, people are not following them. I'll give  an example that came to mind when I was speaking earlier about my time with the epilepsy foundation, we had a parent call and say my child has epilepsy, they're telling me that she can only go to school on the days that the school nurse is there, the school nurse is there two days a week. Which, like, right! That's obviously illegal! It is still happening. I think that the enforcement, the implementation of the laws that we have is crucial. The third one, just financial wellbeing for People with Disabilities, which is multifaceted and employment, benefits policy, it is healthcare policy, but we know that Persons with Disabilities with live in poverty with such high rates, and poverty makes everything harder, and it is incredibly expensive to be poor and that's something that I would like to address.

Over here. I'm from the State of Minnesota. I'm speaking of going to the future, you spoke of the Title II UPIM, and now a pipe dream I might have would be Title II for governments like ours to be far more viable, and that there is a way to put any requirements in Title III, so that now that you know a lot of things have been, but a lot of the law, they have been in place where organizations received federal funding and title 3 does not have that component, can you see a way with your background how we can put the requirement of title 3 so that everyone else can also benefit?

RACHEL PATTERSON: So I'll try to answer this carefully, is it possible to write a title 3reg, yes.
(Laughter).

Why don't you do it.

RACHEL PATTERSON: You're putting me on the spot. I would, you know, encourage if you want a Title III reg, people hate this, write letters, tell us it is a priority. I know it is not satisfactory. I wish I could come out here and announce we're doing it! You mow, I can't do that.

Hello. Hey, Rachel. My name is Victor. I commend you on thinking about financial empowerment programs, and I would encourage you to kind of look at what cities have done because there have been financial empowerment programs that the cities throughout the United States has put together to really address the poverty issue and to really leverage if a lot of different things, in conjunction with that, I would encourage you to look at the housing urban development and the 7% set aside, 5% for mobility to present for hearing and vision and look to increase that, affordability, housing, it is a big issue, and then also coming back to leverage the program Obama put together for  God, I can't  it is  it is setting the money aside for Persons with Disabilities and I can't think of it off the side of my head, it will come to me  inhousing? No, not housing, it can  you can leverage  someone help me out here, the able act. Yeah, to leverage  thank you. To level the Able Act as a way to provide income for housing so that they can meet the housing requirement, a lot of people fall short because of the poverty, but if you tie that into financial empowerment with housing urban development and increasing the number from 7% to 15%, that would be an incredible thing to do.

RACHEL PATTERSON: Great.
Thank you very much. A fascinating 
[Applause]
Perspective. Thank you. Thank you, this was wonderful. We already have a dose of terrific history and background on where we are today. This is very important to see where we're coming from and where we could be going in the future. Thank you very much.
[Applause]

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