Andy Imparato, Executive Director of Disability Rights California

CARL SIGMOND, HOST: From KVMR Nevada City and in partnership with FREED, welcome to Disability Rap. I’m Carl Sigmond.

Today we’re joined by Andy Imparato, the Executive Director of Disability Rights California (DRC). DRC is the federally funded legal services agency that serves Californians with disabilities across the age spectrum and across disability. They offer a wide array of advocacy services, which Andy will tell us about.

Andy grew up in Los Angeles and graduated from Stanford Law School. He then had an impressive career in Washington D.C., serving as the Disability Policy Director for Chairman Tom Harkin of the US Senate Committee on Health, Education, Labor and Pensions. Also while he was in Washington, Andy led the American Association of People with Disabilities and the Association of University Centers on Disabilities. Earlier this year, President Biden appointed Andy to the Biden Harris Covid-19 Health Equity Task Force, which develops recommendations for the White House Covid-19 response.

Andy Imparato, it Is such a pleasure to welcome you to Disability Rap.

ANDY IMPARATO: Thanks, Carl. It’s great to be here.

SIGMOND: I want to begin by just asking you to briefly lay out what Disability Rights California is, what do you offer to people with disabilities in the state, and what is your advocacy program?

IMPARATO: As you know, Disability Rights California is one of 57 federally funded protection and advocacy agencies across the country. So, there’s a protection and advocacy agency in every state and territory, and our funding is based on the size of the population in the state. So, because California is the largest state, we have the largest federal grant to support legal services for people with all types of disabilities across the age spectrum across California. And then we also have state contracts with the state developmental disability services agency and the department of state hospitals that kind of supplement our federal grants. But basically, we do advocacy – advocacy in administrative hearings and in the courts. We do training – you know – helping people know their rights under the Americans with Disabilities Act and other laws designed to protect people with disabilities. We do policy advocacy in Sacramento and around the state, and – you know – we’re connected to this national network of protection and advocacy agencies. So we also get involved in national advocacy in Washington, D.C. on issues like voting access, which was the last time that I saw you, Carl. We were doing a statewide webinar with the Secretary of State of California Shirley Weber, who was doing a debrief on what we learned from the last election cycle.

[Disability Rights California is] a big organization. We have about 290 staff about, 26 offices across California, and for me – you know – having spent 30 years on the east coast, it’s been fun being back in my home state. I started as the executive director in February of last year, so a month before the pandemic. It’s certainly been a challenging first year and a half with the pandemic and all of us having to figure out how to do remote. Most of what we’ve done for the last year and a half people have been working from home. That’s slowly starting to change, but – you know – it’s been great being back in California, I had never lived in Sacramento. Our headquarters is in Sacramento, and that’s where I live now. And I’ve really enjoyed getting to know the city. I look forward to getting to know it even more now that more things are open.

I met Ana Acton from the FREED Center [for Independent Living] when I worked at the American Association of People with Disabilities. We did a lot of work on voting and Ana was part of that. So, I’ve known her and your center for a long time and it’s great to be here with you today.

SIGMOND: It’s great to have you, and you have such an interesting story that I want to get into in a bit, but before that, we’ve covered the Covid-19 pandemic a lot on the show. We did a show on crisis standards of care. We’ve done a couple segments on vaccine access, and I know you’ve been heavily involved in both of those issues, both here in California and nationwide. I always ask people: where are we right now, because as you know, things are always changing. So, where are we right now?

IMPARATO: You know, when you say where are we now, I – you know – I think part of the reason I was interested in joining this Health Equity Task Force at the federal level is the purpose of the task force is really to learn lessons from the whole pandemic and try to help our country be better prepared for the next pandemic. So, I think one of the areas where we need to be better prepared is if there’s a surge in a pandemic and there’s scarce resources, A) what do we do to make sure we have more resources, so we don’t have the scarcity on things like ventilators? That’s something that we can anticipate and try to plan for. And then B) what do we do to make sure people don’t experience discrimination and the folks who are making these decisions actually understand non-discrimination laws on the basis of disability and age. So, I feel like the Office of Civil Rights at the US Department of Health and Human Services has an opportunity now to educate the public health world, educate the health care world, about how not to discriminate, and how to do rationing and crisis standards of care in a way that doesn’t discriminate.

On vaccines, the President has announced a gold of 70% vaccinations by July 4th. In California, I think we’re doing better than a lot of the country. But there are still large populations in California – you know – particularly in communities of color and in rural areas who – you know, I’m sure including where you are – who have not hit the 70% target. So, it’s this weird… I feel like we’re living through a weird time right now where the Governor has said we’re going to reopen the state and everybody who’s been fully vaccinated doesn’t have to wear a mask. And I think for a lot of folks with disabilities who still feel like they’re at higher risk than the rest of the population, they’re nervous about going out and going back to business as usual because A) the vaccines are not foolproof. Some people because of the nature of their disabilities didn’t feel comfortable getting a vaccine.

So, I don’t feel like we’re out of the woods yet if that makes sense. And the other thing that we’ve been focusing on in the task force is this population of people who have long Covid – you know [people who] have long-term symptoms related to Covid. It’s hard. We don’t have a kind of a standardized definition of what long Covid is. There’s a lot of people who are experiencing symptoms who never got a Covid diagnosis. They never got a test because it was hard to get tests.

So, I – you know – I’m thinking about this from a broad disability policy standpoint. We have potentially a huge population of folks who have long-term disabilities and chronic health conditions related to Covid. And if you look at our country’s history of dealing with things that were not well understood by medical professionals – things like chronic fatigue syndrome – it’s not a very good history. You know – it’s hard to get diagnoses; it’s hard to get disability benefits; it’s hard to get the right kind of specialized health care or interdisciplinary health care if these things are affecting multiple body systems at the same time.

So, one of the things I’ve been thinking about is: the pandemic really isn’t over as long as there are still people experiencing long-term symptoms from Covid. And some of those folks have been able to do better after getting the vaccine but a lot of folks are not doing better after getting the vaccine. So, I just think it’s going to be important for us as a disability community to connect with this new large population of people who are dealing with long-term disabilities, help them understand their civil rights under all the laws that are designed to protect people with disabilities, help them understand and navigate the disability benefits system, and then work with them to try to make our whole system of services and supports – including but not limited to the health care system – to make it work better for all people with disabilities.

If you look at the history of disability policy in our country, when you have a major new population of veterans with disabilities after a major conflict, that’s when we’ve seen a lot of progress around disability policy. The whole field of medical rehabilitation really developed in the wake of the civil war with veterans coming back. So, I’m kind of hopeful – cautiously hopeful – that this large population of folks with long Covid might help us make the SSI and SSDI and Medicaid and Medicare and other systems work better for all people with disabilities.

SIGMOND: Thank you. You basically preempted my next question, but I do want to dig a bit deeper and talk about what you think the long-term impacts of the pandemic will be for our community.

IMPARATO: The people who experienced the worst consequences of this pandemic were people in nursing homes. I say that with a caveat – that we don’t have great data on what happened to people outside of nursing homes. There’s a lot that we don’t know about who died from Covid for the folks that were not in congregate settings. But – you know – we’ve been saying as a disability movement for decades that people should not be forced to live in nursing homes and they should be able to live in the community; that the institutional bias in the Medicaid program – where Medicaid has to pay for care in a nursing home but it’s optional to pay for care in a home and community-based setting – is a violation of people’s civil rights.

And I think what we learned in this pandemic is that: that civil rights violation also put people at greater risk of dying during a pandemic. And the congregate setting, that’s not just nursing homes. It’s also prisons and jails and state hospitals. You know – we had to sue the state of California to try to identify folks who were in the state hospital system for people with psychiatric disabilities who were at greatest risk of dying from Covid.

Yeah, I mean – my hope, Carl – you know – when you talk about what comes next, my hope is that we learn a lesson, and we’re going to develop new models for supporting people in the community. And we’re not going to rely as heavily on congregate settings. As you know, there are entrenched interests that will want to keep those settings going.

And I’m also hoping that the national conversation we’re having around criminal justice reform and – you know – trying to move away from mass incarceration is something that will benefit a lot of folks with disabilities who have been swept up – especially people of color with disabilities – who’ve been swept up in the war on drugs and other things that led to mass incarceration.

There’s so many opportunities to learn lessons from the pandemic. You know – in the education system, recognizing that children with disabilities did not do well during this pandemic. A lot of kids with disabilities – especially folks that didn’t have good high speed internet connections or needed hands-on therapies – that just weren’t available during the pandemic. You know – the fact that so many people were able to get the ability to work from home seamlessly when it was needed by everyone, but for a lot of folks with disabilities, that was an accommodation that was denied pretty consistently by lots of employers. Hopefully we’ve learned a lesson there and it’s going to open up more employment opportunities for people who want to work remotely. But I also don’t want people with disabilities to be forced to work remotely. I mean – we basically want to have the same access to the labor force as everyone else, and if we’re all going to have this hybrid lifestyle now, I’m hopeful that people with disabilities who want to go to an office will still be able to go to the office and get the accommodations they need at the office.

The other thing I’ll just say – I mean – there’s so many lessons from the pandemic. But I would say the pandemic was a failure of government at every level. You know – we did not get the leadership from the federal government that we deserved. We didn’t get the leadership from state governments that we deserve, and we didn’t get the leadership from local governments that we deserve.

And I would say part of the reason we didn’t get the leadership is we don’t have enough people with disabilities – people lived experience working in all these settings. I mean – if you just take the California Department of Public Health as an example. The people that worked on the guidelines for crisis standards of care – you know – there weren’t any folks with lived experience with disabilities who were in-house who were helping them develop those guidelines. So, they put them out and then they got the input after the fact. If we had people in-house helping them like we do at [the California Office of Emergency Services] or other agencies in the state, then maybe they could avoid making some of these mistakes.

So, I’m hopeful that we can come out of this pandemic recognizing that we need more disability expertise in government – at all levels of government, and we need to create opportunities and pipelines for people with disabilities to move into government service. There’s so many lessons from the pandemic, but those are some that immediately come to mind for me. And I am – you know – grateful at how much the independent living center community in California has stepped up around vaccines – both getting people ready for the vaccine and helping connect people with vaccines. And I think it’s an interesting question: if you think about the future of independent living, especially in the state like California, how much of our work is going to be around emergency response, pandemic response, wildfire response. It just seems like we’re in a state that has a series of overlapping crises, and responding to crises is going to be a big part of what independent living centers do moving forward.

SIGMOND: Thank you so much. I want to pivot now to talk about you. You have such an interesting story, and I just want to know how you got into this field, and then what it means to you to be doing the work you do.

IMPARATO: Yeah – well, thanks, Carl. Like so many of us in the disability movement, my motivation comes from my lived experience with my disability. I have an adult-onset disability, which is true of a lot of folks with disabilities. I have bipolar disorder, which kicked in for me during my last semester of law school.

So, when I was in law school, I kind of quickly realized that I wanted to use my law degree to do public interest work and social justice work, and I was kind of inspired by my classmates in law school. And then I had my first serious episode of depression during my last semester of law school and ended up working in legal services in Boston – actually in Cambridge, Massachusetts – called Cambridge and Somerville Legal Services. And they put me in SSI advocacy because I hadn’t taken the bar yet and you could represent people in administrative hearings without having passed the bar. So I was doing SSI cases that summer and learned about a Supreme Court decision that made it easier for children to qualify for SSI. So I applied for a fellowship to implement that decision in Massachusetts, got the fellowship, worked at the equivalent of Disability Rights California in Massachusetts, which is called the Disability Law Center.

And that was kind of my introduction to the disability movement, and I – you know – there were lawyers with visible and non-visible disabilities who worked there. I ended up working with a coalition of all the independent living centers in Massachusetts – which were some of the oldest independent living centers in the country – and with the developmental disability service providers.

We had a Medicaid director in Massachusetts who was kind of a maverick and was trying to move towards managed care and was dismantling a lot of the programs that people with disabilities really liked in Massachusetts. So I had the chance to work with a broad coalition on that, and I found I like doing policy work. But – you know – I mean, really, for me, I feel like maybe this is my Catholic upbringing, but I feel like God gave me a thing to deal with – with the bipolar disorder – and then gave me something to do with that lived experience, where I could apply it to try to improve – you know – the lived experience of people with all types of disabilities.

And even though my experience is mental health related, all of my jobs have been broader than mental health. I find it’s really empowering for me as somebody with mental illness to come at these issues from a cross-disability frame. And I find when you go with a disability-specific frame, especially for people with mental disabilities, they tend to not have a lot of power in that frame. But if you can take a cross-disability frame: the basic idea that all of us – whatever our disability is – are the experts in our own experience. And then you know how to design policies that are going to work for us. That has always been a more empowering frame for me than – you know – just kind of being an advocate around mental health issues or any other disability-specific frame.

So yeah – and then I’ve also just benefited – and I’m sure, Carl, you feel the same – but I’ve benefited from mentors throughout my career, starting in Massachusetts. You know – early mentors for me were people like Bill Henning who’s now the head of the independent living center in Boston, and – you know – Paul Spooner and other – you know – important leaders in the national independent living movement. And then when I got to DC, I just – you know – Justin Dart and Mark [inaudible] and so many great leaders that I’ve had the chance to work with. So I feel very blessed.

I feel like a lot has happened in disability policy during my life: the Americans with Disabilities Act, the [United Nations] Convention on the Rights of People with Disabilities. So if you look at world history and take the long view, we’re kind of lucky to have lived through a period of dramatic change. And I feel blessed to have been able to do this work during this period.

SIGMOND: That was Andy Imparato, the Executive Director of Disability Rights California. Their website is disabilityrightsca.org.

And that does it for the show. Special thanks to Courtney Williams for her support. To listen to this show again, go to our website, FREED.org/disabilityrap, or wherever you get your podcasts. I’m Carl Sigmond for another edition of Disability Rap.