Andy Imparato, disability rights lawyer and the Executive Director at Disability Rights California (DRC), has been appointed by President Biden's Administration as one of 12 members of the new White House task force dedicated to health equity.
Photo: Andy Imparato, JD
(Photo courtesy of Andy Imparato, JD)
The task force is a result of an executive order signed by President Biden on January 21, which created the group and directed it to address “COVID-19-related social inequities.” These inequities include race, ethnicity, geography, disability, sexual orientation and gender identity.
Imparato has extensive experience in disability-related law, including 17 years of leading two national disability organizations, the Association of University Centers on Disabilities (AUCD) and the American Association of People with Disabilities, as well as working with the U.S. Equal Employment Opportunity Commission. His interest in service and advocacy dates as far back as his time at Stanford Law, when he served as a member of the Stanford Public Interest Law Foundation.
Imparato expressed his gratitude and praised the administration’s recognition of equity’s importance when dealing with COVID-19.
“I am grateful to have this opportunity to represent the disability community on this task force. I look forward to leveraging this opportunity to improve equity for people with disabilities and other communities who experience disparities in California and beyond,”
In the following Q&A, which has been edited for clarity, Andy Imparato, Esq. discusses the pandemic, the disability community and elderly population, hardships that some disability communities are facing, the Centers for Disease Control and Prevention (CDC) – and collecting better data.
You are one of the top leaders in the disability community with an impressive career. Has advocacy and being in service always been an interest of yours?
For me, it happened during law school. I was an undergrad studying Italian renaissance culture and I thought about getting a Ph.D. in art history, so my interest in social justice really grew out of my experience in law school. I was very inspired by a group of classmates at Stanford Law School in the late 80s who were just extraordinary people that really wanted to change the world, and that made me believe that they were going to change the world. I was inspired by them.
As one of the 12 members of the Biden-Harris Administration COVID-19 Health Equity Task Force, under the leadership of Dr. Marcella Nunez-Smith, MD, what are your specific priorities?
"There is an immediate focus and there is a long term focus. Immediately, we are focusing attention on making recommendations that can help the country respond to the pandemic while it is still going on; helping with vaccine prioritization, helping improve data collection, and using data to try to improve equity. In the long term, we want to take a look back at everything that happened during this pandemic and make recommendations for strengthening the public health infrastructure, the healthcare system, and other systems that people interact with, so that they are more equitable and more prepared for whatever comes next. Obviously, the pandemic has had a disproportionate negative impact on African Americans, the Latino community, Native Americans, some Pacific Islanders, and people in rural areas. There are a lot of populations that have kind of disproportionately been negatively impacted by COVID-19, so we kind of want to unpack all of that and figure out – ‘OK what are the lessons and what can the federal government do to help our country to be better prepared for the next pandemic or the next crisis."
What are your thoughts about how the coronavirus pandemic was handled during the previous administration?
I think when it started in March , at least when we started to focus on California. My immediate reaction was that the lack of the preparedness for the pandemic was a failure of government at every level. It is easier to blame the Trump White House and certainly, the Trump White House could have been better prepared and shown better leadership during the pandemic. But, I think the governors for the most part weren’t ready for this. I think local governments were not ready for this. We are under invested in our public health infrastructure as a country and a lot of these problems pre-dated Trump and continue after Trump. We didn’t get the leadership we deserved from our president, but I don’t think that’s where the problems started and ended.
Disabled and elderly people, especially from low income communities, and communities of color have a disadvantage in obtaining an appointment for a vaccine, from not knowing where to start to not having internet access. What is being done to assist disabled people who do not have access to the Internet or are unable to use a computer to set up an appointment?
We are working hard on that in California right now. I’m more focusing on where I currently work right now at Disability Rights California (DRC). The task force has only met once, so I still don’t know all the things that we are going to do or how we are going to do them, but I’m comfortable saying that in California we have a working group with the multiple state agencies involved that are trying to help the state be ready for March 15, because on March 15, people under 65, or 16-64 year old high risk people with disabilities are going to be eligible for the vaccine. I think the state estimates that only 17% of that population will become eligible for the vaccine because they are in a higher risk status.So there is a lot to do. The state is trying to leverage the intellectual and development mental service provider network and our regional system that we have in California that organizes services for people with intellectual and developmental disabilities. They are trying to leverage the independent living centers across the state and basically, find trusted partners that have deep relationships with the disability community and capacity to find people and get them vaccinated, and hopefully, with the Johnson & Johnson vaccine, it’s going to be easier to get the vaccine to people where they are, because as you know some people with disabilities are not going to show up at a mass vaccination site, but if you can get the vaccines to them in their homes, that would be a game changer.
I would like to switch gears for a moment to this March, which happens to be Multiple Sclerosis Awareness Month. Are you aware of any guidance given to medical providers regarding the COVID-19 vaccine and people diagnosed with multiple sclerosis or other disabilities?
That is a problem in multiple states, including in my state, California. In California, we get a provider bulletin that lays out who is eligible starting March 15, and it’s not clear, there are a lot of ways to interpret that document. Providers have the CDC list, which was never intended to be a comprehensive list, or to be used for vaccine prioritization. They have this broad category of people who are at high risk of dying from COVID-19 if they don’t get the vaccine. There is a lot of room for interpretation, and I think a lot of clinicians are interpreting it conservatively, because they don’t want to get in trouble. I’m hoping that the state is going to give the clinicians permission to use their own medical judgment and say: “Yes, based on everything that I know about this patient, they are at higher risk of getting COVID-19, or higher risk of dying from COVID-19, or higher risk of dying from something else because they are forgoing medical treatment, for the reason of being afraid of getting COVID-19.” So my hope is that we are going to get more clarity on that in the next week. But, it’s a problem. When I talk about failure of government at every level, the CDC is one of the government entities that is not showing the leadership that we need on this issue. They should be telling the states:
'Here are all the ways to reach high-risk people with disabilities. Don’t use our list as a comprehensive list.' I don’t think the CDC is showing enough leadership. Hopefully that’s going to change, but right now we are very disappointed with the CDC.
How do you and your team plan to combat misinformation and disinformation about the vaccine, knowing how fast these information is moving on social media, and even from public officials, such as the Texas Governor Greg Abbott and Mississippi Governor Tate Reeves who ended the statewide mask mandate yesterday, March 2?
I think what the disability and advocates community is trying to do is work with a friendlier White House to get the federal government to show more leadership. We give the president a lot of credit for including disability in the health equity task force. There were multiple speakers during the meeting on Friday (Feb. 26), who mentioned disability as equity multiple times. That doesn’t always happen. A lot of times when people talk about health equity they talk about race, poverty, and geography, but they don’t always talk about disability. So, I’m grateful for that and I think again, we have a short and a longer term, or medium term. The short term is to try to put good ideas in front of decision makers at the federal level and the state level, so that they can show more leadership and basically, save more lives. Ultimately, vaccine deployment right now is about saving as many lives as we can. When there is a hurricane, we do an after-action analysis and try to learn from it. We need to do the same with this pandemic, looking back on 13 months of this – What is the lesson learned? Why did so many people die in nursing homes? Which nursing homes were the ones to have the highest number of deaths? What are the implications of that for the future of nursing homes and the future of monetary nursing homes? Why did so many people in communities of color die? Why was our health infrastructure not ready for this? Why do we have such a problem with data? The biggest problem for people with disabilities around vaccines is that we don’t have great data. If we try to do analysis of who is most likely to die from COVID-19, that analysis is driven by data. But, if we don’t have the data, then the lack of data itself is an equity issue and the equity issue is compounded when they use the lack of data to limit access to the vaccine.
To clarify what you just said, the disabled community, which has been underserved and does not trust the government, has justifiable skepticism about where we are today.
It’s an interesting part of the analysis. There are a number of people who are immunocompromised who have basically been scared to death, and they have not left their houses or apartments for over a year. Many of them have foregone medical treatment because they were afraid to take the risk to get the medical treatment. So yes, that’s part of the reason why they are at high risk of dying from COVID-19. These are people with long term chronic health conditions who are afraid to see a treating professional. So, there are a lot of reasons to prioritize people with chronic illness and disabilities for the vaccine. But again, I would say our biggest challenge is a lack of data and a lack of leadership from entities like the CDC, who should be able to interpret what is going on so the states can make better decisions.
People suffering from a disability almost always have been faced with unimaginable hardships in 2020, as well as in 2021, the disabled community and advocates found themselves fighting not only the coronavirus pandemic but prejudice. Human rights should be addressed in our home nation, before we lecture anyone else about it. Will this be one of the issues that you can address?
Yes, I get it. I think that’s part of the after-action analysis if you will. So, healthcare rationing, called ‘crisis standards of care,’ brought these issues to the forefront during this pandemic. I think the whole issue about ‘do not resuscitate’ in hospitals has been going on for years, where people with disabilities get discriminated against behind closed doors in hospitals. That’s been going on for a long time. But what was new, was when our California Department of Public Health and other state agencies said, “When you try to decide who gets a ventilator, and you have a limited supply during a surge, it’s OK not to give a ventilator to somebody if they are too disabled or too old because they are not going to benefit from it as much as somebody who is younger and less disabled.” And we said to the state of California, “That’s discrimination.That’s illegal under the Americans with Disabilities Act and we are not going to tolerate it.” The state of California said, “Oh sorry, our bad,” and changed the guidance, but the fact that they were comfortable putting it out there as a public document shows you we have a long way to go to educate the public health world, and really the medical world, about what disability discrimination looks like. They think, “Well, we have limited resources, so let’s give it to the people who can benefit from it the most,” and they just don’t think hard about what that means in terms of the quality of life, or the assumption of quality of life of people who live with long-term disabilities or who are elderly.
The disability community had a hard time finding employment before the pandemic, and now most, if not all, disabled people are in need of remote jobs. Is employment for the disability community one other issue you can address?
In California, we have analyzed the data between March and December of last year, 36% of the working age disabled population that was in the workforce left the labor force and during that same period, 5% of people without disability left the labor force in California. Some people got knocked out and then came back in, but only 5% stayed out. That’s a huge disparity, from the perspective of disability and employment. People with disability are about 2/3 of our working age population, who are not in our working force. So, we don’t want to go back to 2/3 not being in the labor force. We want to redefine what success looks like around disability and employment. We need a specific strategy to bring the 36% who were knocked out back into the labor force and then create more equity, more access to the economy that’s going to exist post COVID-19 and leverage working from home. I mean my organization alone – we have 290 employees. Before the pandemic, I’m going to guess maybe 20 employees were working permanently from home. After the pandemic, I’m going to guess over 100. If organizations transform themselves in that way and there is a critical mass working from home permanently, that will create opportunities for people with disabilities or who have transportation barriers, but as we just noted in this interview, reliable Internet is going to matter a lot. So, we are going to have to figure out how to get broadband deployed and more reliable than it is right now.
Will you temporarily be stepping back from some of your current responsibilities at Disability Rights California (DRC)?
No, the Biden-Harris task force is a time-limited, volunteer thing. I don’t get paid for it. It will probably only last about 6 to 8 months. I’m pretty confident it will be over by October at the latest. There is no reason to step back. It’s just another thing on my plate and it fits well with what I am already doing. I personally have two big priorities. One is to keep as many people alive as possible, as we’re going through this next phase of this pandemic, and the second is to build a more inclusive economy in the wake of the pandemic. The Biden-Harris task force is aligned with what I’m already focused on.
Is there anything specific that you’d like for the readers to know, that we have not addressed?
I don’t know if this plays out in New Jersey, but one interesting dynamic in California is a group of stakeholders put together to help make these hard decisions around the vaccine, called the Community Vaccine Advisory Committee. There are about 80 of us, representing a broad spectrum of shareholders, from teachers, farm workers, people with disabilities, seniors, healthcare plans, unions, you name it. There are a lot of stakeholders on there, and I don’t remember in my 30 year career working on initiative that was effective ever. This issue with vaccines literally affects everybody in the world, not just in the United States, so I can’t remember working on another issue like this. I think it tests the ability of the coalition to work together and make hard decisions around equity, when everyone is affected by those decisions. In general, I’ve been impressed in California that most of the stakeholders representing older adults, are saying that they are in the same risk of dying of COVID-19 as the disability community, thus combining the older adults and disabled to receive the vaccine at the same time. To hear a bunch of advocates for people over 65 going to bat for disabled people under 65, I find it encouraging and I think it lays the foundation for more collaboration between the disability community and advocates for older adults moving forward. In California, we just developed a master plan for aging. Two disability groups were on that stakeholder advisory committee, and one of them was Disability Rights California, which helped us build relationships. Now I’m seeing those relationships bare fruit in the context of vaccines. I’m looking forward to working with that coalition on other issues after the pandemic.
I want to conclude with this: If someone would like to attempt to follow in your footsteps, what advice would you have for them?
My whole career I’ve enjoyed talking to people about their careers and tried to help them with career advice, but mostly, I try to help people with a wide range of disabilities. I kind of think of it in terms of energy. If you have more energy when you come home from work than you did when you arrived at work, you’re in the right job, and you’re in the right profession. If your work sucks the energy out of you, then you’re in the wrong job and the wrong profession. Life's too short. Keep trying until you find the job that energizes you. When you’re on the job, pay attention to the tasks from which you draft energy and the tasks that drain your energy, and try to organize your job and your career over time so that you spend as much time as possible on the things that really energize you. For me, my favorite thing to do is to mentor emerging leaders, so I always try to carve out time to do that because that’s where I get the energy from.
Alie Pierce is a human rights activist and disability advocate. She may be reached at Alie.WeekenderNJ@gmail.com. Follow Alie Pierce on Twitter & IG. Connect with WeekenderNJ on Facebook, Twitter and IG.
Editor’s Note: Imparato is one member of the 12 people task force, but he only speaks for himself, and not the Biden-Harris Administration COVID-19 Health Equity Task Force.