Nothing About Us Without Us: Autistic People Shaping Policy About Our Lives
Hi, thank you so much for having me, and thank you Michael for that incredibly powerful introduction. Like Michael said, my name is Julia Bascom, and I’m the Executive Director for the Autistic Self Advocacy Network. We’re a national disability rights organization run by and for autistic adults and people with other developmental disabilities. I want to take a moment to give you all some background on my organization before we get started, because we’re different from most other autism organizations in a few key ways. First, we’re a self-advocacy organization, and that means two things. One, it means we are run by and for autistic people. That means me, my staff, my board, are all autistic people, often with additional disabilities as well. Two, like I mentioned, “self-advocacy” means that we’re a disability rights organization. We take a civil rights framework to disability policy issues. We don’t think about disability policy as a set of medical issues–we frame things in terms of inclusion, equity, and justice.
ASAN believes that the goal of autism advocacy, policy, and research should be a world in which autistic people enjoy equal access, rights, and opportunities. Our work focuses on policy advocacy and systems change, as opposed to things like family support or direct services to local folks. That work is important, but it’s not what we do. Similarly, we focus specifically on adults, who tend to be overlooked in our cultural conversation about autism.
By this point, I know some folks have started assuming that when I talk about rights and policy and self-advocacy, I really just mean rights and policy and self-advocacy for “people like me.” “People like me” can mean a lot of different things, but for brevity’s sake let’s say it means autistic people who can talk sometimes and who don’t have intellectual disabilities. I am going to talk a lot more about what I mean when I say rights and policy and self-advocacy, but I want to be absolutely unambiguous and clear, right from the start, that I am talking about all autistic people. ASAN includes and works on behalf of the entire autism spectrum. A third of my board are AAC users. We include in our advocacy people who have intellectual disabilities, people who can’t live on our own, people who struggle with self-injurious or aggressive behavior, and people with additional disabilities and complex needs. Not a single thing I am about to say is for only one segment of my community. ASAN believes that civil rights are for everyone. That’s what we’re all about.
So that’s self-advocacy! Another word for all of this is “neurodiversity.” Neurodiversity is two words smushed together to make one–“neurological” and “diversity” combined to make neurological diversity, or neurodiversity. On its face, neurodiversity is just a simple biological fact. A reflection of reality. No two human brains are exactly the same. Even on a macro level, there are lots and lots and lots of different ways to have a brain. Some of those ways are called autism, dyslexia, intellectual disability, left handedness, ADHD, perfect pitch, and so on. But neurodiversity is also a powerful philosophical and political idea. The Developmental Disabilities Act states that “disability is a natural part of the human experience.” This is federal legislation, last authorized in 2000, which recognizes that neurological diversity, that disability, is normal. It’s a basic fact about our species. And this fact comes with consequences. For example, the law goes on to say “Disability is a natural part of the human experience that does not diminish the right of the individuals with developmental disabilities to enjoy the opportunity to live independently, enjoy self-determination, make choices, contribute to society, and experience full integration and inclusion in economic, political, social and cultural, and educational mainstream of American society.”
The neurodiversity movement, of which I and ASAN are very much a part, is about making that promise a reality. It’s about embracing this simple biological fact–that there are many ways to have a brain–and working from there to build a world that is accessible, inclusive, and fair to everyone, regardless of how their brain works. We absolutely believe that autism is a disability. But we also know that disability itself is very different from what most people think. Disability isn’t a tragedy, a worst-case scenario, or a horror story. Disability is a natural part of the human experience.
Let’s dig into what that means. There are a lot of different ways to think about disability. If we’re philosophers, then those different ways of thinking are called “models”–the charity model, the moral model, and so on. Whole books have been written about this. I am personally not a philosopher, so I am going to just talk about the two most common models: the medical model, and the social model. Both the medical and the social model of disability look at a person with a disability in the world, and they identify a problem that needs to be solved. But they focus on very different things.
For the purposes of this example, let’s say our person with a disability can’t walk. They use a wheelchair. And they have encountered a flight of stairs, which they cannot get up. If we are using the medical model, we look at this scenario and we identify the problem pretty quickly: they can’t walk! Their legs don’t work. And once we’ve identified the problem, we can identify potential solutions: maybe they need physical therapy, or surgery. Maybe we need to look into different treatments for spinal cord injuries–maybe stem cells are doing something cool. Maybe there’s a new drug. The possibilities are endless! Although they definitely involve some people in white lab coats.
So that’s the medical model. The social model sees the same person. Here’s our guy, he cannot walk so he uses a wheelchair, and he has encountered a flight of stairs. He cannot go up the stairs. That is not good. But the social model identifies a different problem at the root of all of this.
Why didn’t anyone build a ramp?
Instead of locating the problem as being within the disabled person’s body, the social model says that the problem is in how we as a society treat people with disabilities, people with different brains or bodies. Since the problem we’ve identified is different, the solutions are different too. The social model says we should be looking at a disabled person as a whole person who interacts with the whole world. We should identify the external barriers that are getting in their way, and we should focus on removing them. If disability is a normal part of the human experience, then we should be making sure that people with disabilities can be a normal part of the world, just like everyone else.
We can apply this way of thinking to autism. In the medical model, autism means that my senses are disordered. If sounds hurt me, the solution is to fix how my brain is processing those sounds, or teach me how to get used to it, or at least how to hide my discomfort. The problem is located in my body. In the social model, the solution to auditory overload is to give me a pair of headphones. The social model also allows us to acknowledge complexity–that the same painful sensitivity might also make my experience with music uniquely transcendent. The same thing that makes wool unbearably itchy might also make water between my fingertips more soothing than anything else in the world. Maybe not all of those things need a “solution.” Maybe autism might need a more nuanced approach than has traditionally been offered.
The social model isn’t something that neurodiversity advocates made up. It comes out of the broader disability rights movement, of which we are a part. The disability rights movement has a long and complicated history, but for simplicity’s sake I will just say that the modern disability rights movement in the United States, by the 1970s, was driven by people with physical disabilities and often serious medical needs–people with cerebral palsy, post-polio syndrome, muscular dystrophies, etc. Our leaders were people who often needed 24/7 care. And yet, they were focused, not on medical advances, but on identifying the artificial barriers imposed on them by a society that didn’t value accessibility. Similarly, the self-advocacy movement was created by people with intellectual disabilities who were institution survivors. They were not asking for some Flowers For Algernon scenario. Their demands were very clear: start treating us like people, stop calling us the r-word, and stop keeping us in institutions.
I want to stress that the social and medical models of disability are not either-or. When I break my arm, I want the emergency room doctors to use the medical model! But autism is not a broken arm. It’s a lifelong neurodevelopmental condition that colors and influences every part of how I interact with the world. Because my brain is very different in important ways from the norm, we call it a disability, and this world is not built for me. Because our world expects fluent verbal speech at all times and is filled with loud noises, big crowds of people, and unpredictable schedules, it can be inaccessible to me. I might as well be sitting at the bottom of a flight of stairs I cannot climb. I am disabled. That doesn’t mean there is something bad or wrong or deficient about me that needs to be changed. It means that a world dominated by people who love eye contact puts barriers in my way.
I’m not sure what it would look like to take all of those barriers away. But that’s what we’re going to talk about today.
I’m going to focus on 2 main buckets of barriers: research, and policy. And I’m going to talk specifically about the importance of participatory research and policy making. Again, these are not new ideas I came up with myself. The rallying cry of the disability community for many years has been: Nothing About Us, Without Us! This is a passionate cry for equality, but it’s also a logical proposition. If the goal is to remove barriers we experience, we should be a part of that conversation. No one knows the barriers better than we do. So let’s talk.
Public policy is, fundamentally, the process of making decisions about how public dollars should be spent. We write laws deciding what should and shouldn’t happen, and then regulations explaining how to implement those laws, and typically in order to have an impact this all comes with some sort of monetary implication. Are we spending money on a new program? Are we no longer spending money on something? Are we attaching strings to the money? Even laws like “murder is illegal” have a fiscal component–the criminal legal system to enforce those laws doesn’t run without it. If our goal is to craft effective policy, it’s important to understand that.
Policy advocacy is ASAN’s bread and butter. What that means is that we spend a lot of time looking at the laws and regulations that make up our current interlocking system of programs and policies affecting people with disabilities. We look at housing, employment, criminal justice, health care, guardianship, education, and a lot more. We look at how all of the pieces fit together. We look at the history of how they came to be. And we look for the levers–the things that mean these laws and regulations do, or don’t, get enforced. What is being funded? Why? What strings are attached to that funding? If we change anything about this system, what is the impact? What are the ripple effects? And then we take our knowledge about what our community needs and deserves, and we combine that with all of this analysis, and we put forward proposals to change things for the better.
So, for example, a lot of people with intellectual and developmental disabilities, including a fair number of autistic adults, currently make less than minimum wage. A lot less. Sometimes 5 cents an hour. This is because of a loophole in the Fair Labor Standards Act, which was passed in 1938. The Fair Labor Standards Act gave workers a right to a minimum wage–but it made an exception for people with disabilities. This was originally thought of as a way to incentivize employers to hire people with disabilities–if they have to pay us less money, maybe they’ll be more likely to hire us! Nowadays, it’s obviously an incredibly regressive, discriminatory, and degrading practice. But the law hasn’t been changed, and that means there are still a couple hundred thousand people with disabilities, mostly intellectual disabilities, in this country making literally pennies on the dollar. Some of them are right here in Pennsylvania.
ASAN thinks this is a big problem. So does every other self-advocacy organization, and virtually every other disability organization in general. We think this loophole needs to be closed, that people need to be paid real wages for their work, and that instead of being stuck in segregated places like sheltered workshops, we should get support to work jobs that are meaningful to us in the broader community. If I had my way, I would snap my fingers right now and that’s where we’d be. Since this exception has been allowed for over 80 years, a tangled policy web has grown up around it. If we want to end subminimum wage, we need to address all of those problems too.
For example: most people who earn subminimum wage work in sheltered workshops. Sheltered workshops are segregated settings where large groups of disabled people spend all day together, and don’t really get a chance to interact with nondisabled peers or explore the broader community. These sheltered workshops are often their primary activity during the day, and might even offer transportation. So, if we end subminimum wage and close sheltered workshops, we need to make sure that people have other things to do during the day. We need to make sure we’re paying for personalized supports, including transportation, so people can have good lives and family members don’t have to stop working and stay home with us. Also, many people with intellectual disabilities can’t just go through a typical hiring process and work a typical job without any support. So we need to make sure we’re investing in supported and customized employment, so that people really can work.
The good news is that we know how to do these things! There’s a lot of research backing all of this up. And that’s why ASAN enthusiastically supports the Transition to Competitive Employment Act, as introduced by Senator Casey. This bill phases out subminimum wage over 6 years, and gives states and providers resources and technical assistance to help them through the change. It acknowledges that the problem is more complicated than just closing a loophole, and it adds funding to address those complications. It helps states redirect their Medicaid funding to meet people’s needs in the community, and it makes real investments in increasing the number of providers who do offer supported employment. It looks at all of those interconnecting pieces, and offers a real solution.
ASAN has a lot of different policy priorities, beyond employment, and I’ll talk about a few of them today. Our guiding principle is self-determination: the idea that people with disabilities, including people with the most significant disabilities, have the right to be in charge of our lives, our supports, and our futures. This idea is deeply connected to self-advocacy. And so, in that spirit of Nothing About Us, Without Us, we are therefore big believers in participatory policymaking.
On some level, participatory policymaking is just a fancy word for “democracy.” It’s about making sure that the people impacted by a policy have a hand in shaping it. This is obviously key to developing good policy solutions–no one knows an issue better than the people living it. But for people with disabilities, especially for people with cognitive disabilities, policy is often developed without even a thought of consulting us. We aren’t seen as people you can ask about this stuff. If any consultation happens, it tends to be through a third party–parents or providers, not us. And this is a problem, because while the views of those groups are certainly valuable and should be included where appropriate, we are not in fact interchangeable! We often have different experiences, different perspectives, and different goals. There is no substitute for self-advocate voices. You have to talk to us.
For self-advocates, participatory policymaking often involves doing things differently from the norm. Self-advocates have powerful lived experience, but we might not know the jargon that policymakers use. Information about policy issues might be inaccessible to us, and traditional methods of consultation might not work. We might need adapted materials, information presented to us differently, extra time, communication supports, and a lot more. We might not be able to hold a traditional meeting or send in formal written comments at all. Including us in the conversation can take a lot of work, especially if the goal is for us to meaningfully contribute, instead of just sitting there as a token disabled person. But our meaningful inclusion is both a moral imperative and a necessary, essential part of crafting, passing, and implementing good policy. So ASAN has invested a lot of time and energy into figuring out how to make this work.
For example, in 2017, the President and Congress tried to repeal the Affordable Care Act and gut Medicaid. We wanted to protect these vital health programs, and we wanted to make sure people with intellectual and developmental disabilities were able to participate in the national conversation about this. But we realized pretty quickly that a lot of people who depended on these programs to survive–especially Medicaid–didn’t know it. And they didn’t have access to information they could understand about what these programs were, how they worked, or what some of the proposed changes would mean. So, we worked together with ASERT to create toolkits with this information. After months of work, we were able to explain the basics of Medicaid at a 4th grade reading level, with visual supports–and as a result, more self-advocates with intellectual disabilities were able to follow what they were hearing in the news, form an opinion, and express that opinion to their elected official. The Medicaid toolkit is one of the most popular resources ASAN has ever created, and it fundamentally changed the way we do advocacy. Three years later, we’ve created similar guides to employment policy, the federal budget process, voting, the Americans with Disabilities Act, home and community based services, and talking to your elected officials, and we’re working on several more as we speak. Our goal is to create a conduit between self-advocates and policy makers, providing the support and infrastructure folks may need in order to be a part of the policy process. We’re very focused on making sure that people have the tools and information they need in order to participate and share their views.
So that’s one example, but participatory policymaking can look like lots of different things. Every state in the US has a Council on Developmental Disabilities–often called a DD council, for short–which advises the governor on disability issues. DD councils are required to have robust participation from self-advocates, and they have often played a key leadership role in developing accommodations and strategies to support people with intellectual disabilities in policy meetings. For example, you might hold a pre-meeting to go over information on the agenda ahead of time, or designate a go-to person that people can rely on for guidance and support. Or, you know, self-advocates have been meeting in our own local groups for decades now, and even have our own state and national conferences. Policy makers can come and meet us where we are. We certainly go and meet them on their turf often enough.
Data like this–people’s lived experiences, their expertise and recommendations, their insights into how things work on the ground–is crucial to making effective policies that help instead of hurt. Another invaluable form of data for policymakers comes from traditional research. Policymakers have a multifaceted relationship to research. They need research in order to craft effective policy. They need research in order to know how much different policy options might cost, how well they can be expected to work, how to maximize different outcomes, and how to balance competing priorities. And they also often fund research, which is ironically itself a policy decision–what research do we fund, and how much?
Let’s look at research on community living, for example. We now have over 4 decades worth of research showing us unambiguously that people with developmental disabilities have better lives in the community than we do in institutions. This is true no matter what our disability is or how much help we need. When we are in the community, we are healthier, we live longer, we are happier, we gain more skills, and we achieve better outcomes. This has been proven over and over again. For policy makers, this is very important information. It has immediate policy implications. It means that when we think about services for people with disabilities, we need to be focusing on supporting people to live in the community. It means we should finish closing institutions. It means that if we don’t fix our service system, people are going to have a lower quality of life, and that’s not acceptable.
But even with this knowledge, when we write policies about community living, we encounter new questions. For example, how do we know if a setting is truly in the community? We have strong research that shows that a person who lives in a 10-person group facility has a very different quality of life–and on average a lower quality of life–than a person who lives on their own or with a friend or a family member. How do we draw the line between institutions and community settings? What do quality community services look like? What sets them apart from other services? How can we replicate them at scale across the country? These are critical issues that directly impact the day-to-day lives of millions of people with disabilities. We need to be able to answer them, and we need to have laws and regulations and, ultimately, services, that reflect those answers.
We know that there are hundreds of thousands of people with disabilities sitting on waiting lists right now. They need services, but they aren’t getting them. And then we know that there is some number of people–but we don’t know how many–who don’t get Medicaid, or who don’t meet criteria under a state’s waiver, but who also still need services. Let’s say I want to write a law that would guarantee home and community-based services to every person with a disability who needs them. (I do.) I need to know how many people that will be. I need to know how many services I should be budgeting for. I need to know how much this bill will cost.
Policymakers need to be able to turn to researchers and get answers to these questions. In order to have effective policy–and in order to be able to pay for that policy to be fully and comprehensively implemented–we need clear data. But when we look at the state of autism research right now, it becomes immediately clear that we have a big problem. The federal government spends over $292 million dollars on autism research each year, which represents over 80% of the total funding for autism research nationally. About 2% of research spending on autism looks at autistic people across the lifespan–adolescents, adults, and elders. Another 2% or so looks at services for us–what helps, and what doesn’t. In contrast, 48% of autism research funding looks at basic biology and what might cause autism, typically with the explicit goal of preventing autistic people from existing in the future.
This does not reflect the priorities of the autistic community–in fact, we find this gross overbalance and the focus on prevention to be unethical and insulting. It also doesn’t help policy makers address pressing issues of relevance to our community. We have real, urgent research concerns that directly impact our quality of life, and we would like to see these issues addressed. Autistic people die, on average, 16 years earlier than nonautistic people, and what little data we have suggests this is largely due to preventable, co-occurring medical conditions. Our suicide rate is 9x that of the general population. We have the lowest employment rate in the disability community. Research from right here at Drexel shows that when we leave high school, we are at an incredibly high risk of becoming disconnected from our communities and suffer incredibly poor outcomes as a result. Most autistic adults need some kind of long-term support over the course of our life, but few of us are eligible for Medicaid services. Nonspeaking autistic people can communicate if supported with communication methods besides speech–but there is very little known about the most effective methods or how to best support users. These are huge, urgent issues. But autism researchers aren’t focused on them. They aren’t focused on them because that’s not where the money is. Autism research dollars are concentrated at NIH, and NIH wants to focus on traditional basic science. So that’s where federal dollars go.
And that’s a policy problem. It’s a problem in the sense that it makes it harder for policymakers to write bills about services after high school or regulations about health care, but it’s also a problem that federal autism research dollars are being spent so poorly. And that is something policymakers can do something about. That money is authorized by the Autism CARES Act. Congress could require more self-advocate oversight of the money. They could move money from NIH to other research agencies that focus more on applied research. They could require NIH to rebalance its spending, or put a certain amount towards issues identified as a priority by the autistic community. They could create pipeline programs for autistic researchers. They could require that more funding go towards what’s called participatory research.
There are many different forms of participatory research–this is yet another area where we only have an hour so I’m speaking very broadly. But in general, when we talk about participatory research we are talking about a process in which, for any given research study, members of the community being studied share power with researchers. We work together to pick the research topic, form research questions, design the study, analyze data, and discuss the results. Participatory research has a long history outside the autism community, and it’s a field unto itself.
Right now, the most common response I see when the results of a new autism study are shared in my community is frustration. Sometimes–oftentimes–the frustration is because the research is of poor quality, or focused on prevention or chasing the idea of a “cure.” But many other times, the frustration is because the study is announcing something that autistic people have known about ourselves and our community for a very long time. “They could have just asked,” we lament, as researchers breathlessly announce that stimming might be helpful or that autistic people sometimes experience anxiety. If autism research prioritized participatory research and working with autistic people, we wouldn’t be in the position we are now, where in 2020 researchers are starting to suggest that, you know, a lot of these autistic people really seem to have sensory issues. We’d be decades further down that road–we might even have some research-based strategies for ways to mitigate sensory overload.
There is real value to basic science research, and I’m not saying we should stop. But the point of autism science should be to help autistic people. It is worth asking us what we think would help, what matters to us. Autistic people, by and large, do not want a cure. We do not want therapies or medications which focus on making us appear less autistic. We don’t want genetic tests that can diagnose autistic people before we are born. We want better health care. We want better services. If you want to stick to genetics research, we want to know why so many of us have co-occurring conditions like connective tissue disorders or epilepsy. If you want to stick to pharmaceutical research, it would be great to get real data on how many of us react atypically to meds, any idea why, or how to get epilepsy or anxiety medications that actually work for us. If you want to stick to traditional psychology, that’s fine–help us develop a diagnostic assessment for adults, because one doesn’t exist yet.
No matter what field you are in, there are ways we can work together, and ways that your research can have a tangible impact on our lives. But that just isn’t what is happening right now, at least not to scale. And when the vast majority of autism research is looking at things that autistic people ourselves do not find valuable and at worst find harmful, we have a problem. The failure of autism research writ large to take autistic people seriously is a moral failure, just as it is in policymaking–and it is also an empirical failure that holds the field back from meaningful insight and real impact.
So. What does all of this mean?
Obviously, we have to change the way we do research, including our policies about research. We need to rebalance research funding, prioritize participatory research, and focus on issues the autistic community regards as a high priority. So far, policy makers have really failed to step up to this task. Autism CARES–the law I talked about earlier which authorizes autism research funding–was reauthorized about a year ago. We made some small gains–there’s some language in there now acknowledging that autistic kids grow up into autistic adults, and we managed to get one more seat for self-advocates on the advisory committee overseeing the spending. Now a whole 10% of the committee members might be self-advocates! But Congress completely failed to address in any way the imbalance in research funding, to support other research agencies besides NIH, or to prioritize participatory research or research on issues impacting adults or services. So that’s not great. The next authorization is in 2024, and you can bet we’re already gearing up to push for more changes, again.
In the meantime, we continue to encourage researchers and funders to consult with the autistic community, and we are happily engaged in uplifting research that does that. There are more and more researchers looking for creative ways to include our community in their work, and we’re excited to work with them. Increasingly, we’re running into a newer problem, where researchers come to us wanting to know what we think–but they’re already so far along in their project that it’s too late for us to have real input. So we’re trying to get folks to understand that participatory research–much like participatory policymaking–means coming to us before you have an idea. It means coming up with the ideas together, from the very start. And when we do, we come up with better ideas.
Which brings us back to policy. Just as with research, we have to change the way we do policy at a federal, state, and local level. In fact, we have to change the policy process itself. The policy process currently has major barriers to participation for many people, especially autistic people and those with similar disabilities. Constituent engagement with elected officials often requires the ability to make phone calls, tolerate chaotic town halls, or participate in formal meetings. That excludes far too many of us.
As an initial step towards changing that reality, ASAN launched our proxy caller system last year. With proxy calling, a constituent whose disability makes phones difficult can write out what they want to say to their congressperson, and a volunteer will make the call and read out their message for them. We’ve also hosted training for congressional staff to brief them on the system and discuss other accessibility issues like what to expect when an AAC user calls (it’s not a robocall!), and how to better support constituents with disabilities. And we’re excited to see more and more congressional staffers themselves begin to identify as people with disabilities–including some autistic staffers. The only thing more impactful than that would be to see more people with disabilities running for office–and we’re working on that too. This past month, Jessica Benham won her campaign for state representative right here in Pennsylvania, as the first openly autistic candidate in United States history. In New York, Yuh-Line Niou won her re-election bid after coming out as autistic as well. Nothing About Us, Without Us includes the halls of power.
A lot of folks believe that lawmakers have the only roles that matter when it comes to policy–they pass the laws, and then that’s that. But in fact, from a policy perspective, your job basically starts when a law is passed. Passing a law is a lot of work, but you have years and years left to go once something is signed into law. Just about every disability-related law needs regulations that go into more detail about what it means to follow the law. Those regulations can take years to write, and even longer to be implemented. Even once everything is up and running, it has to be monitored continuously to make sure that everything is happening properly. And when problems arise, we have to start the whole process over again.
The good news for advocates is that none of this is supposed to happen without our input. Throughout the regulatory process, the government is supposed to give opportunities for public comment–chances for experts, advocates, and everyday folks to weigh in and share our thoughts, concerns, and recommendations. Public comments can usually be provided in writing, although sometimes they will be supplemented by town halls, listening sessions, or other opportunities to share thoughts in-person or over the phone. At ASAN, one of our next areas of focus is equipping self-advocates to participate in the public comment process as well. The timeline is often longer than it is for other advocacy events, and the format is more flexible, so we think this is a promising way for self-advocates to have an impact shaping policy.
Of course, in order to engage, people need accessible information about the process as well as about the policies under discussion, and how this connects to their life. We’re working on creating those materials–and we’re also looking to train other organizations to do the same. At the end of the day, our democracy is stronger when everyone can take part, and that means that many different organizations, including those outside the disability community, are going to need to work on accessibility and inclusion.
A lot of the examples I use about the regulatory process are about the federal government, so I just want to make sure to note that this is also generally true of state and local government as well. Local advocacy is often more concrete for a lot of people–it can be easier to connect to your life. We need self-advocates weighing in at every level of government and shaping policy wherever policy is made. As a national organization, I want people with disabilities to call their congressperson–but I also want them to run for school board. School boards very rarely have people who went through the special education system on them. Imagine the impact.
At the end of the day, regulations and implementation are important because these things are a vital and necessary part of realizing the promises we’ve made to the disability community. I’m a part of what’s called the ADA generation–I grew up after the passage of the Americans with Disabilities Act, in a world where I theoretically had equal rights as a disabled person. As a member of the ADA generation, my life is certainly quite different than it would have been in the past. I got to grow up at home, not in an institution. I went to my neighborhood school. I make my own decisions and I am in charge of my own life, and my life looks pretty ordinary from the outside. But, like many members of the ADA generation, I grew up learning first-hand the disconnect between what the law promised and what reality offered.
The ADA promises us community integration, economic security, equal opportunity, and full participation. This summer, the disability community celebrated the law’s 30th anniversary. But for many people with disabilities, even 30 years later, those promises have not been realized. If I live in a rural area and I can’t drive, I probably rely on my family and paratransit to get where I need to go. If my paratransit can’t cross county lines, or if it has to be booked days in advance and is always late, it’s hard to say I am really experiencing community integration. If I have to get social security in order to get Medicaid waiver services, and social security forces me to live in poverty, I don’t have economic security. If my guardian can forbid me to go to community events I am interested in, that’s not full participation. If company after company turns me away from interviews because they can tell I have a disability, I’m not getting equal opportunities.
These are all policy issues. If we want to realize the promise of the ADA–if we truly want equal rights and access for people with disabilities–we have to get involved, lift up these problems, and put forward solutions. And we have to use participatory policy making to do that.
For example, let’s circle back to community living. In 2014, CMS, which is the government agency in charge of Medicaid, released the final version of the Home and Community Based Services (or HCBS) Settings Rule. Prior to this regulation, there was not a standard federal definition of what “home and community based” meant. Medicaid has 2 streams for funding long-term services: one stream for services in institutions, and one stream for HCBS, services in the community. But without a clear federal standard for what “HCBS” meant, people were spending years on waiting lists for HCBS waivers, only to receive services that were indistinguishable from institutional services–living with many other people, following group schedules, rarely getting into the broader community, and not getting supports that were truly individualized or person-centered. It was a huge problem. So, in 2009, CMS announced they were going to develop a regulation to clarify what the difference was between HCBS and institutional services, and set some minimum quality standards for HCBS.
The Settings Rule is a great example of the regulatory process in action. CMS held multiple public comment periods, and they got thousands upon thousands of responses from self-advocates and service users, families, providers, states, and just about everyone else. First, CMS asked for general information. They wanted to know what folks’ experiences of services were, what was important to people, and what everyone thought the rule should accomplish. Then, they took all of that feedback and used it to make a draft rule. They put that draft out for comment again, and once again got a ton of responses. There were things in the draft rule that people liked, and things people didn’t. They processed all of those comments and revised the rule again. Other government agencies funded additional research and outreach–for example, ASAN and Self Advocates Becoming Empowered, the national self-advocacy organization for people with intellectual disabilities, received a grant to host a summit and document what people thought good services meant for them. We put the results in a final report called Keeping The Promise, which you can see on our website, and made sure that that was included in the comment process.
When they put the final rule out in 2014, it reflected five years of intense work and advocacy. As a result, the rule focuses on the experience of the person getting services. Are we treated with dignity and respect? Do we have control over our everyday choices, schedule, and routines? Do we have a person-centered plan? Is that plan followed? It says we have rights, like the right to eat when we’re hungry, lock our door, and decorate our rooms the way we want to. I cannot stress enough how basic this regulation is. It gives us rights that other people take for granted. That’s pretty much it. But of course, if you’ve never had those rights before, it’s huge.
It’s important to understand that the final settings rule was a compromise. Thousands of people commented, and no one got everything they wanted. My organization, for example, wanted clear size limits on settings and thought that the agency providing you services shouldn’t be allowed to be your housing provider too. We didn’t get either of those things. Other people thought that providers should still be allowed to control what people ate and when they went to bed. They didn’t get that. The final rule is hundreds of pages long, and that’s because CMS had to go through and respond to all of the different comments they had gotten and publicly explain why they made the decisions they did.
At the end of the day, the settings rule is about program integrity. If a specific program is supposed to provide home and community based services, and that program is being paid for with public dollars, then that program needs to actually provide what it says it does. Otherwise, that’s Medicaid fraud. States can still provide institutional services–but they need to make sure those services are being paid through the part of Medicaid that specifically funds institutions, not the comparatively more limited HCBS funding. There’s no double-dipping. By holding states accountable for how they are spending Medicaid dollars, and making sure that people who are supposed to be getting HCBS are truly getting HCBS, the federal government is protecting taxpayers, service recipients, and itself. It’s basic good governance. And it would not have been possible without robust involvement from advocates, including self-advocates.
I’m spending so much time on this because I need you all to understand why this matters. Right now, it is still common for a person with a disability to have good services on paper, but still be disempowered in their day-to-day life, especially if they have an intellectual disability or significant personal care needs. Do we actually get to decide what we do every day? Do we have to follow special rules? Are we being treated like an adult? Who is really in charge of our day-to-day life? It should be us. It often isn’t. This stuff can seem pretty abstract to folks who don’t use services, so I want to bring it home with a concrete example.
This slide shows an image of my cat, and I’m going to explain why. I don’t talk about my personal experience of disability very much in public, but I am going to make a small exception for this. I can’t live on my own. I use shared living for my residential supports, and I am lucky to have a really good set up. For example, I have a cat. That might not sound like a big deal, but listen. When I wanted to get a cat, I checked in with my roommate, and then we went and got one. I didn’t have to have a team meeting. I didn’t have to get my group home or the agency to change the house rules to allow pets. I decided I wanted a cat, and I got one, like an ordinary person.
I need a lot of prompting, or “cuing and monitoring” in Medicaid-speak, in order to complete some everyday routines, but especially my bedtime routine. By the time I’m willing to go to bed, I’m so tired that it’s hard for me to stay on task and I don’t have very much impulse control. So, I keep getting distracted by my cat, and the cute things she’s doing, and forgetting that I was brushing my teeth or taking my meds. My support person spends a lot of time during this redirecting me. Yes, the cat is very cute, remember to put the toothpaste on your toothbrush. I get along really well with my support person, but an outside observer or a harried manager might say I was wasting their time. Or maybe I’m stalling. I’m definitely having a lot of cat-focused behaviors.
But here’s the thing. I have a really great support set-up, and that means that I get to keep my cat. No one has talked about getting rid of the cat, or even just shutting it out of the room while bedtime is happening. No one has ever told me that the consequence of getting distracted is that I “lose” the cat. No one has ever so much as breathed the word “consequences” at me, because I am an adult and that is not language or a paradigm we use with adults we are treating as equals, let alone adults who we work for.
Does that sound like a big deal to you? It does to me, because this is not the experience a lot of my friends who also rely on services get to have.
The settings rule doesn’t say anything about cats. That’s not the point. But the settings rule says a lot about quality of life. The settings rule says a lot about the way I should expect to be treated, and the kind of life I should get to have. Do I get to have an ordinary life, with ordinary things? Do I get to have the things that are important to me? Does my support person see me as something to control, as a checklist of tasks to complete, as a large child to be babysat, as an inconvenience to be managed, as wasting their time, or does my support person understand that I am in charge, that they work for me, that their job is to help me reach my goals and live the life I want? Am I treated with respect? The answers to these questions have a very concrete impact on my quality of life–on my ability to have a beloved pet, and on a hundred other little things every day. And those little things, to me, to my friends, to people who use HCBS, are everything. And that’s what the rule is about.
Because the thing is, the reason the settings rule came about, is that my experience is rare. My baseline expectation that I am in charge of my life is rare. It should be common, but it’s rare. It’s rare because of the way states have set up their service systems. That was a policy choice. The settings rule gives us a chance to change that and make this kind of basic dignity common. But to do that, we have to look at everything. We have to look at every part of our system, and we have to change things from the top down and the bottom up. And as those policy changes are happening, we have to be consulting with self-advocates and consumers in the state about their experiences and recommendations, at every point in the process. The rule is fundamentally about the person’s experience of their services and their lives. If we aren’t focused on this stuff, we aren’t doing our jobs.
You can’t just change a program overnight. In order to implement the rule, states have to develop detailed plans showing what changes they will be making, and the state has to give people an opportunity to comment on their specific plan, again. They go back and forth with CMS to finalize the plan, and every time it gets updated, it goes back out for public comment. Pennsylvania is currently in the process of finalizing its plan–there may be more public comment opportunities coming your way, so keep your eyes open!
As states have worked to update their community services and make sure they are providing what people need, a lot of states have run into a familiar problem: funding. Individualized supports are usually more cost-effective than group supports, but switching over how a state or provider does things can cost more up-front. For example, let’s talk about employment again. We know that people have better outcomes when they are working or otherwise spending the day in the community, instead of spending it in a sheltered workshop. But closing down the sheltered workshop and getting everyone set up with new services costs money up front–in the short-term, it’s more expensive, even though in the long-run it’s better. And many states and providers don’t have that kind of money. Similarly, the settings rule says that anyone who wants to live in their own home, instead of in a group home, has to have that option available. But the vast majority of states can’t meet that requirement, because they’ve invested most of their housing resources into group homes for years. They can make the change, but they need some resources to get started.
Senator Casey took this problem seriously. His office, led by Michael, met with advocates for months to work out a solution. It’s called the HCBS Infrastructure Investment Act, and it would give states grants so they can invest in the improvements to their service system that will bring them into the 21st century. It’s another great example of participatory policy making. The involvement of self-advocates isn’t just limited to helping with the writing of the bill itself. The way the bill works is, if a state decides they want a grant, they have to put together a planning council. The council has to include people who use services, people who need services but aren’t getting them, family members, providers, and people from different state agencies. At least 50% of the committee has to be people with disabilities. They have to put together a comprehensive plan for what they would do with the grant, focusing on what people in their state need. And then once the grant is awarded, the committee is still involved in overseeing the implementation. Self-advocates can shape the process at every step, and truly make sure the services their state offers match what people with disabilities need.
If there’s one theme I hope you walk away with today, it’s that self-advocates must be involved at every level of policy. When ASAN works on policies around community services, we spend a lot of time looking at states, and even individual providers–but we also look at a national level, and we look for every opportunity to get this issue addressed. Which, interestingly enough, has included universal health care. One of the fundamental problems many people with disabilities experience is that HCBS is disconnected from other kinds of health care. Health insurance will cover things like doctor visits, surgery, medications, even therapies–but it doesn’t cover the services and supports we might need over the long term to stay in our homes and communities and live good lives. If you need HCBS, you have to go to Medicaid. Prior to 2017, when policy folks talked about health care reform, including universal health care, HCBS was rarely mentioned. It wasn’t really a part of the conversation. But after the disability community helped save Medicaid and the ACA in 2017, we had a little juice. So ASAN, along with some folks from The Arc and a few other organizations, went and met with the Congressional offices authoring 3 different versions of Medicare For All. We educated them about the importance of HCBS, and we made sure these services were included in all 3 versions of Medicare For All that were introduced this congress.
If HCBS is a part of universal health care, that means there wouldn’t be any more waiting lists. It means everyone who needs services should be able to get them. It means that the services in Maine and the services in Tennessee should be equally good. And it means that people with disabilities could move between states without losing our benefits and having to start all over again. Most importantly, it means we wouldn’t be confined to Medicaid–we could get services even if we worked full time, if that’s what we needed. For a lot of disabled people, it would mean freedom.
Now, we’re realists. We don’t think Medicare For All is going to pass this Congress, or even the next one. That’s not the point. The point is that in 2017 we established a new baseline expectation. If you try to fundamentally change our health care system, and you try to do it without people with disabilities, you will fail. And now we’ve established that if we try and make good changes, and push for things like universal health care, in whatever form that may take, people with disabilities are going to be a part of that. Nothing About Us, Without Us. Regardless of whether or not it’s Medicare For All, the next few years will see another attempt at health care reform. And when that comes about, access to home and community based services are going to be a part of that conversation. Period. It’s not going to be easy, and it’s not going to be quick, but we are going to get universal access to HCBS over the finish line. We’re going to end the waiting lists. We are going to get everybody what they need.
Or at least, that’s the goal.
As you can see, I get pretty revved up about participatory policymaking. It’s exciting stuff! But it is not universally beloved. This is not surprising. When a group that traditionally has been given very little power begins to speak up, they usually push for change. Certain structures feel threatened. Resistance emerges in odd places. A good example of this in Pennsylvania is the fight over the closure of the Polk Center.
At a policy and at a personal level, the closure of Polk Center is an obvious good thing. It is robustly supported by decades and decades of research and practice that show unequivocally that people living in institutions do better in the community. It is supported by strong voices from self-advocates across the state, many of whom are institution survivors, many former residents of Polk Center itself. In fact, most disability organizations in Pennsylvania support the closure, whether they are led by people with disabilities, parents, or providers. So why did the governor have to veto a bill that would have blocked its closure, and the closure of any other institution in the state?
Well, the closure is strongly opposed by the employees who work there. It’s also opposed by some older families, whose family members went into the center decades ago and have lived there for most of their lives. Those families were typically told by doctors that if they loved their family member, they would institutionalize them. It is hard to hear that they were wrong, that this in fact harmed their loved one, and that this time, the experts have it right. They’ve heard that before.
The people opposing the closure are a small minority, but they are loud. And when you listen to what they say, an interesting pattern emerges. First, they insist this is really all about choice. Which is interesting! It’s interesting because institutions are famously devoid of actual, day-to-day choice. It’s interesting because you don’t exactly see nondisabled people lining up for the choice of living in an institution. But they insist that we need to preserve institutions, as a choice. For the people who want them.
So we ask, well, who are the people who want this choice? And this is where we come to the second interesting piece of the pattern. Because they insist that the answer is, people with really significant disabilities. The people with the most significant disabilities, they want this choice.
Now, this is difficult to believe for a few reasons. First of all, people with very intense needs have left Polk Center and other institutions, and they are virtually unanimous in saying they don’t ever want to go back. Second of all, there are certainly current Polk Center residents who say they are afraid to leave, and this is understandable, because change is scary, especially for some people with developmental disabilities. And also because when you talk to these folks, it becomes immediately clear that they have not, actually, been given accurate or accessible information about what their choices would be. Third of all, the defenders of Polk Center will say that since they are the guardians for their family members, their voice is the same as their family member’s voice. Now, this is obviously nonsense. To borrow some autism research jargon, that’s a clear theory of mind problem. But they are right that, as their family member’s guardian, any choice is, legally, theirs. They’re just not the person that choice happens to.
Now, the other thing they will say is that really they are speaking for the people who cannot speak for themselves, who do not have a voice. And this is interesting too! Because it is certainly true that there are people within Polk Center who do not have a good way to communicate right now that other people can understand. But it is also true that we have strong research showing us that there are only 2 prerequisites for communication: preferences, and the ability to move one muscle on your body independently. If you have that, we can find a way for you to signal yes and no. And from there, we can build out a whole communication system.
There are no voiceless people. There are plenty of people who are spoken over, ignored, or not given an accessible way to communicate. That is a huge and urgent human rights issue.
It’s certainly not a reason to keep an institution open.
This rhetoric is not unique to the Polk Center closure. It is the same set of arguments used by those who oppose the Settings Rule, those who want to protect subminimum wage, and those who are threatened by self-advocates speaking for ourselves and taking on a role in policy and research. It’s the flip side of that popular cliche in disability advocacy, the idea that advocacy means speaking for those who cannot speak for themselves. ASAN has always been very clear that no, that’s not it. We’re not speaking for anyone. We are fighting for everyone’s right to speak for themselves. We all have a voice, no matter how we express it, and we are all going to be heard. That’s what ASAN is about. That’s neurodiversity. That’s the whole point.
That’s why we support legislation led by Senator Casey to expand access to communication supports, so that everyone can find a way to be heard that works for them. That’s why we support alternatives to guardianship, like supported decision making, which allow folks to get support understanding and making decisions without losing our legal right to make our own choices. That’s why we are focused on breaking down barriers until anyone who wants to can play a role in policy and research–until, at a minimum, everyone can have a say over their own life. We aren’t leaving anyone behind. Self advocacy has always been about everyone, from the time the first institutions survivors started working on a way to get out. It was never just about those individual people. It was always about everyone else trapped in there with them. We are never content just with our own freedom, our own participation, our own inclusion or our own power. We are not content until we get everyone.
And when things get hard, we don’t give up. We don’t go, oh, this person can’t communicate, this person can’t make decisions, this person is too “severe” or to “low” to be included. We go, that’s our next step. This is the next thing we need to figure out.
Researchers on this zoom today, we need you with us on this. Every issue I’ve talked about today, from access to communication to what good services look like, is something we need still more research on. We are eager to work with you. Come work with us. Policymakers on the zoom, the same goes for you. No matter what your role is, if you are in a position where you are helping in any way to shape decisions about people with disabilities, I implore you to remember that, even if we need help with the acronyms, we are the experts on our own lives. We absolutely must be at the table. And if you consult with us in real, meaningful ways, we can do incredible things.