Transcription

• COVID-19: Disability Rights (with Catherine Blakemore)

  Introduction: Welcome to policy chats, the official podcast of the School of Public Policy at the University of California, Riverside. I'm your host, mad, You bet to join me and my classmates. As we learned about potential policy solutions for today's biggest societal challenges. Joining us today is former executive director at Disability Rights California, Catherine Blakemore, my fellow classmate, Kevin Karami, and I chatted with her about disability rights throughout the years and during the pandemic. 

   

  Kevin Karami: Ms. Blakemore, you have worked as an attorney and director, in legal aid and disability advocacy programs for 40 years. You recently retired as the executive director of Disability Rights California, the non-profit agency established under federal law to protect and advocate for individuals with disabilities. Thank you for joining us today! 

   

  Catherine Blakemore: My pleasure. Nice to be here. 

   

  Kevin: So we have a lot to get into, so I'm going to jump straight into it. So one major challenge that the disabled population faces are the policy barriers that exist and the lack of awareness and enforcement when it comes to existing laws and regulations that require aid and accessibility to people with disabilities. So with that said, my first question to you is, what kind of services, benefits, opportunities, or any other programs, which of these are commonly denied from disabled persons? 

   

  Catherine Blakemore: So I think, you know, people who have disabilities like other marginalized communities, experienced a great difficulty getting the services and support they need to successfully live in the community. And that can range from a lack of access to benefits like health care services or other human services. It can be lack of physical access into a building or other place of public accommodation. It can sometimes be the state deciding that they're going to change how they provide services or benefits that result in across the board cuts. So really if you're a person with a disability, you can experience almost any part of your life, some challenging and getting services that you need. 

   

  Maddie Bunting: Perfect. And I'm just curious, how does the department of Disability Services address these kinds of issues? I know it's your purpose and so I'm just curious about the work behind it. 

   

  Catherine Blakemore: So at Disability Rights California, we really used a multi-tier approach to addressing people's concerns. And that is both providing people with direct representation. Someone might contact our office and explain that they're having a problem in a particular area. And then our staff would initially give them information and ways in which they could address the problem themselves or also offer to provide direct assistance to them. We also, when there were a systemic issue involved, I would look for ways to address the larger sort of policy issue involved in that could be by filing a litigated piece of litigation on behalf of large numbers of people with disabilities. That could occur. For example, when the state makes budget cuts and decides to reduce all of the services people are receiving. That could be inmates with mental health disabilities who are in jail but not receiving treatment for their mental health disability. And instead they're isolated for 23 hours a day in what most of us would typically call solitary confinement, which honestly, it's kind of counter-indicated if you're having a psychiatric emergency. We also did a lot of policy work. So had a big presence in the state capital to address in a systemic way the kind of policy barriers that people were facing. And then one of the unique mandates that this organization had was to do investigations of abuse and neglect. So people with disabilities sometimes live in care facilities, they may not be well cared for. Horrible things happen sometimes to people and then we would intervene and look both at what happened to that individual. But is there a need for a systemic policy change based on, on what we, what we encountered. So sometimes that happens with the use of restraints and school systems where, let's say a child with autism is restrained face down, which is called prone, and suffers an adverse health event as a result of that and leads to our work to change how schools institute behavioral practices to address the challenges that people are having. So those are just some examples of the breadth of work that we do. 

   

  Kevin Karami: Thank you, and that's really amazing to hear. And you kind of briefly mentioned it, but maybe if you can expand this fact that disability rights had been expanded upon in many ways in the past few decades. But maybe if you can elaborate more on the areas that still need to be addressed and that haven't been addressed. And also how we can go about solving them. 

   

  Catherine Blakemore: Sure. I always think it's interesting to look back in history and make parallels to what's happening now. So people with disabilities. And even in the mid part of the last century, they were often institutionalized. That was sort of a preferred way of providing services to individuals and congregate settings. Examples near UCR are there's a State Hospital, there was lanthanum and Developmental Center which serve people with intellectual and developmental disabilities. Um, people were forcibly sterilized because it was viewed that people with disabilities could not be good parents or had other challenges. People with disabilities were often denied the right to vote. So over, over a period of time, we've actually made good progress in addressing some of those. So for people with intellectual and developmental disabilities, we've actually closed most of the state institutions and instead serve people in the community, supporting them to live really full and enriched lives. That's actually less the case for people with mental health disabilities. And it took a little bit of a divergent path. We close lots of institutions for people with mental health disabilities in the late seventies, early eighties. But we did not develop kind of a robust community mental health system. And we're still working to remedy that kind of problem and address homelessness and other things that happened to people. And then we continue to have primarily institutional based care for individuals who are involved with the criminal justice system where they are, they continue to be either institutionalized in a county jail or in a large state institution. So a lot of work to be done in the area of better providing services. Recognizing the value and kind of inherent dignity of people with mental health disabilities, addressing does stigma that people, that people face. And then just one note about voting rights, that's certainly a topic of current conversation federally. And in many states, some of the restrictions that people want to put in place will actually make it more difficult for people with disabilities to vote. When you say people can't do mail-in ballots, people that are often affected by that are people with disabilities for home transportation doesn't exist or they don't have a way to have technology provided at home so that the ballot could be read to them and have a confidential right to vote. So that the issues that we see that reoccurred, some have been fixed and others continue to this day and are sort of part of the current political discussion.

   

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  Maddie Bunting: Wow, you covered so much there. And if I may, I just have a follow-up. I do think mental illness, disability, I'd love if maybe you could expand on that as well. I know even as I've grown up, mental health has become a much greater conversation I can get ever has in the past. And I think a lot of people still have questions and maybe some confusion on, you know, if they maybe suffer from a mental illness or something. So can you maybe just talk about what you mean by mental health disability and kinda more work on that.

   

  Catherine Blakemore: Sure. And thanks for asking that question. I do agree that's a topic of conversation and I think for many people concerning, I think because it gets very quickly linked to homelessness. Some people will link it to violence. I think many of us see examples of stigma when there's a shooting in the world, people often make assumptions that it is a person with a mental health disability. Even though the data actually shows people with mental health disabilities are no longer, no more likely to commit a violent act than other people in the general world. So I think that's all part of the sort of external stigma that continues to exist. I also really like your point Madeline, about how we're actually doing a better job about talking about what I call mental health disabilities. And it's becoming much more mainstream, I think, where all kinds of people are willing to acknowledge, like I have this kind of disability, I have depression or whatever it might be. I have anxiety and I think anything we do to bring that into the open and realize that it's just part of the natural human experience for people to have different types of disability is something that's really, really significant. A lot of the work we did was we hired we hired my organization, hired a lot of people, disabilities to work as advocates and attorneys in our office. And I think seeing people have positions in organizations is one of the very best ways to reduce stigma when someone leading an organization or having a significant role in as a, as a legislative advocate can say, this is not only my professional experiences as my personal experience, that that's just extraordinarily powerful and lets people take back some of the power that's been removed from them by virtual, by virtue of a label that's been attached to them. So lots of good work in, lots of other work that just needs to continue in that kind of overall political and societal discussion about, about that. 

   

  Maddie Bunting: Thank you so much for sharing all of that. And I think this is one way we can contribute to that conversation. If I can go ahead and shift gears a little bit. Since March, California has been expanding access to the COVID-19 vaccine, both recently with those under the age of 18. From your understanding, what was the process like to ensure people with disabilities get vaccinated? 

   

  Catherine Blakemore: So I think, I think there's two pieces of COVID that are actually quite interesting. And I will talk about one that's a little outside of your question. But very early on in the pandemic when we were very concerned about hospitals having more individuals they could serve, then there were going to be beds and ventilators and other capacity for the state began to develop crisis care guidelines. And my looking at those along with many people and the disability and aging community became very concerned that the way the standards were drafted disproportionately deny people with disabilities access to medical treatment. That there was a view if you have certain kinds of health conditions and were rated in a certain way when you went to receive care. That that meant you weren't going to get treatment. And that would be unfortunate for people with disabilities, many of whom might have no more difficulty than another person surviving the COVID illness. So the first, the first piece of work that was done in the disability community was to work with the state to revise those guidelines so it did not have the unintended impact of disproportionately affecting individuals who had disabilities or older adults in California. And I think California actually ended up being a leader in terms of the way that it did its guidelines, which was, I think, quite exciting to see. The second piece was then how do we ensure that people that are most at risk of getting, COVID can get access to, to the vaccine. And so California started with, let's ensure health care providers get it, which makes perfect sense. They're likely to have exposure in ways that many of us, while, I'll say for myself, who did their work on zoom calls. Didn't really see a lot of other people. And then we started doing it by some age bands and other high-risk occupations. Put that excluded were people with disabilities who had similar high-risk kinds of likelihood of getting COVID. So an example of that is individuals who have Down syndrome are at very high risk. When you look at the medical literature of being adversely impacted if they receive COVID. And so the work became to say, how do you then prioritize among the groups that are prioritizing people with disabilities. So they as a group of people that would be more adversely impacted, could, could receive it. And trying to think through it does not mean every person with a disability is more at risk, but it means that certain kinds of people with disabilities are more at risk. And so the work, again in partnership with the state was to identify. Who could be more likely to be at risk and then prioritize them. And ultimately the state moved people with disabilities who have these risk factors to a higher tier so that they could more easily be vaccinated. But another piece of work that went along with that was ensuring that people could actually get access to the vaccine. So again, if you're a person with a disability and you have a harder time either navigating the online and systems by which many of us registered for vaccines, you might need someone to assist you with that. So how do we ensure that that assistance is available? Or perhaps you are not able to go to one of the mass vaccination clinics because it's a large distance from your house, similar to barriers people in other communities have. So trying to work through all of those problems and find solutions so that people could, once they were eligible, actually access the vaccine was the next piece of work that was done.

   

  Kevin Karami: Thank you for that. And I think that's a really important point. You just made and I'd like to kind of shift gears a little bit to another aspect of COVID, because COVID has been such a holistic issue and it’s affecting people in so many different ways. I understand that you were instrumental in California giving a caregiver's of disabled family members early access to the COVID-19 vaccine. And caregivers of the disabled population can sometimes maybe be a little bit more forgotten. And they're so very important. So why was this aspect of vaccine equity so important to you? 

   

  Catherine Blakemore: So I think what you think about, so people with disabilities live in the community for large part now, right? And part of what we realize is that, so caregiving is complicated because people that provide the direct services are often low-wage workers who received minimum wage or slightly above minimum wage to provide that assistance. But on the other hand, that's really the way that people can successfully live in the community. So for low wage workers to successfully maintain and have enough income, they often work for multiple people. And so the more that you have a person caregiver going from person to person to provide the in-home services. You've increased the risk of the person with a disability who might themselves not be going out into the community. They might be able to live in sort of a more secure environment, but the caregiver isn't because they're paid to provide assistance to large numbers of people. And so by vaccinating caregivers, you were then able to ensure they were less likely than tub spread COVID to people that they were carrying for caring for. And that was really a parity, I think, with what was happening at a larger congregate care facility. So staff that worked in nursing homes or staff that worked in residential care facilities for the elderly were prioritized pretty early on. But staff that we're doing more community-based work in people's own home. We're not prioritized and therefore helping create that parody and keep people safe that we're at home became an important priority for, for the state. 

   

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  Kevin Karami: Thank you. And actually have a brief follow-up on what you just said specifically on the caregivers. If you could just briefly expand on why. Not only why the caregivers of disabled families and individuals are important, but also I think don't get mentioned as much when we're discussing disability rights specifically. 

   

  Catherine Blakemore: So I think it's complicated so I can identify some factors. But from the work that I've done, caregivers are, as I mentioned, low-wage workers. They're often primarily women. I'm from black and brown communities, and many of them are recent immigrants. So when you look at all the, all the sort of factors that contribute to who does this work. There. Kind of a combination of marginalized people who, you know, I think people who get their services recognize the value of, but it's not an occupation that's often talked about. And there's a lot of work and discussion now going on. Actually at the federal level, if we pass an infrastructure bill, we should raise the profile and the wages paid to people who do this caregiving. And be part of that infrastructure. And there's some who say that absolutely not, That's not infrastructure. Like infrastructure is road-building and infrastructure is building buildings. I would take a different view and say that infrastructure is also about the people who are providing really vital services in the community. California, many would say, is sort of on the brink of a tsunami of older adults, right? So all of the boomers are getting older and are going to need care. Most people, if you ask anybody like, where do you want to live when you're older, most people are gonna say they want to live in their own, their own home. Not many people say the place I most want to live in the world is in a nursing home. People prefer to be cared for at home. And so if we're going to provide care to people at home than we need a really high-quality workforce that can provide that service where we're we're at SF State and as a country recognizing the value of that, and honestly it's less expensive to keep people at home even if you were to pay caregivers more than it is to provide services in institutions. So, and a lot of ways that becomes a win-win is economically more viable and it also supports the people who are doing that's really critical service for people. 

   

  Maddie Bunting: Definitely. And I think most, if not all families end up having that conversation now on point with loved ones of, you know, what's the plan? you know, what's the plan? What are your wishes? What would you prefer? Going back to the state of California, they often cite a moral obligation to make sure that vaccines are reserved for those that are at greatest risk. I know that was an alert talking point in this state when talking about those booster shots and fall or, you know, we don't know this is a first time for all of us. We don't know what it's going to look like. Do you believe that California prioritized the disabled community and their caregivers during this time, during the rollout of the vaccine and maybe any lessons for come fall with this, your shots or any anytime in the future. 

   

  Catherine Blakemore: So I don't think California started from the place of prioritizing people with disability or their caregivers. So I think it was the result of a lot of advocacy that helped the state recognize that they were a very vulnerable group and we're needing the recognition of being recognized. I think California rose to the occasion. Appropriately prioritize people that took longer than I might have liked to have seen. But it happened and it's hard to imagine that the state would go back on the commitment that it made and its obligation to serve people with that we're vulnerable. I, you know, I think there's still vaccine inequity in California and I think it's something we should all care about. There's a host of reasons why people in a variety of different communities are not getting vaccinated as easily. I'm a lucky person. I ended up being at the age four. I could get the vaccine pretty quickly. I have good transportation. I can use the internet. I could drive myself to a drive through clinic in my community and I could get vaccinated. That's not other people's experience. I think if you look at people that are in their 80s or 90s saying to people you're going to use a computer to get your vaccine. Might not, might not be possible for them, doesn't mean it's not possible for some people, but not possible for others. Um, and then there's the transportation barriers, right, that people experience like should someone have to take three buses to get to a vaccine site? Or how do we ensure that the communities that were most impacted by COVID are the communities that can have vaccines more readily provided. And that, and that plays out in, in lots of ways. I mean, we know with COVID that not only with vaccines, but with the economic impact, both in terms of who continued to work and had to work outside of their home. It's often low-wage black and brown communities. We know that who's impacted by the inability to pay rent are the same communities. I've been doing, I’m also on the California access to justice commission. And a lot of the work we've been doing is trying to help think through strategies to support people to access the rental assistance that's available to keep people in their homes. Because the worst consequences of any pandemic is suddenly you have thousands or hundreds of thousands of people that are losing their housing, which just destabilizes so many things in their life. So lots of things, lots of lessons learned, I think from COVID about how California and other states can do, do better in supporting the diverse populations that live here. 

   

  Kevin Karami: Thank you for that. And you kind of already went into my last question, but I'd like to end on a broader note. Just in general, what else do you believe the state of California should do to support those of the disabled population and their caregivers at this time, but also in the future in a world where COVID hopefully isn't as big a player as it is right now. 

   

  Catherine Blakemore: So I feel I mean, I feel like California we’re coming out of the closure and the pandemic. And in a lot of ways I'm actually really proud of California for the work that was done. I always think that the budget, so right now, California is about to pass its budget for the next year starting to life first. And I always say the best way to look at how California is doing is to see how it prioritizes the money that it's spending. So there have been proposals to increase the wages of direct care professionals. That would be a victory to me because that says we are recognizing that caregiving is an important service and we want to support people so they can have more economic certainty in, in their own lives. I look at things that are going to be increasing the SSI benefits to people with disabilities. Are we going to be expanding on the services that are available under Medical because that's what people with disabilities often access. So I'm anxiously awaiting to see what's gonna be in the budget. I hear some good signs. I think there's a commitment, particularly given the surplus that California has to make some changes that are long overdue. I'll add to that list too, since we talked about mental health, I'm hopeful for some additional funds going into mental health to support strong community mental health services because that's what's gonna keep people in their communities. And people with disabilities are just like the rest of us in the world. And they want the ability to live in the community, to be able to go about their life and help the kinds of services and supports that are going to make that possible. 

   

  Kevin Karami: Thank you Ms.Blakemore, for such insightful answers of an issue that really needs to be talked about more and thank you for taking time out of your busy schedule to be with us today. It was really, really fun to talk to you. 

   

  Catherine Blakemore: Oh, it was great talking to both of you. And I look forward to listening to the podcast.

  
  Outro: This podcast is a production of the UC Riverside School of Public Policy. Our theme music was produced by C Codaine. I'm Maddie Bunting, till next time.