EDITOR’S NOTE: This week we are launching Preparing to Protect, a new series for a new year and the new dire season we’re entering. To refer to this moment as post-election or post-inauguration would be to understate the nature of the threshold we’ve crossed. What we’re living is nothing less than the formal capture, and full-throated occupation, of the federal government by far-right, white supremacist, and authoritarian—in short, fascist—movements. While our fight/flight/freeze/fawn instincts are real, we must withdraw our energy from the violent spectacle of kakistocracy and give it instead to each other, cultivating the internal dispositions and intellectual understandings that will allow us to enact new strategies for “blocking and building.” Toward those ends, Deceleration is embarking on a series of stories that check in with the communities and movements the current administration has promised to target: migrant rights, trans rights, climate justice, Palestine—but also knowledge workers of all stripes and the very right to protest and criticize one’s government. ¶ We begin with Kit O’Connell’s Q&A with Texas-based disability rights organizers on how they are gearing up not just for deep austerity politics under Trump and Musk, but for the opening of the state’s 89th legislative session. We begin with disability justice movements for reasons both personal and political. As a media outlet led by two disabled writers, we know the importance of leading in this moment with our embodied vulnerabilities—our common human fragility and mortality, against the shame of weakness at the heart of fascism—as the ground for our resolve to accompany one another, and to establish care for all relatives as the terrain of an anti-fascist politics. — Marisol Cortez
For the past 40 years, ADAPT of Texas has advocated for the world to be more accessible, so that more disabled people can live in their communities, rather than in institutions. The progress this community has made in that timespan, which includes the 1990 passage of the Americans with Disabilities Act, is remarkable. At 78 years old, community organizer Bob Kafka has been there to witness those changes. Like many in the rabble-rousing organization, he’s not afraid to throw his body, and his wheelchair, in the way of the machinery of injustice; he was present at key moments of nonviolent direct action like the Capitol Crawl and the subsequent occupation of the Capitol rotunda which forced Congress to pass the ADA.
Today, the disability rights community is looking at the incoming administration with trepidation, preparing to fight attempts to dismantle their hardfought gains. In a state where the governor is himself disabled yet often seems actively hostile to their cause, ADAPT organizers are prepared to ramp up pressure on Texas lawmakers to improve the state’s treatment of disabled people and their caregivers.
TAKE ACTION: RSVP for a 2 p.m. January 28 Zoom presentation on the devastating effect of block grants and per-capita caps on Medicaid by emailing Bob Kafka. You can also contact PACT by email or phone at (512) 442-0252.
In a recent phone conversation with Deceleration, Kafka was joined by Cathy Cranston, an organizer in sister organization PACT (Personal Attendants’ Coalition of Texas). Both organizations have spent years advocating for a pay raise for caregivers and personal attendants, who make as little as $10.60 per hour for public insurance (such as Medicare) in Texas, despite the physically intensive nature of caring for another human being. As a result of these low wages, people like Kafka, who depend on their attendants for crucial everyday tasks like bathing or dressing themselves, often struggle to hire and keep their caregivers.
This conversation has been edited for length and clarity.
Kit O’Connell/Deceleration: Why don’t you start by introducing yourselves and your organizations?
Bob Kafka/ADAPT: ADAPT of Texas is a statewide disability rights and services organization. Our main purpose is community integration—that people with disabilities should have the right and the services to be able to live in the most integrated setting. That means being able to get in-home community services, integrated transportation, employment, housing, so that people can be as included as possible.
Cathy Cranston/PACT: PACT was created in 2005, and we consist of people with disabilities and their personal care attendants, direct care workers that assist individuals to stay independent in the community. Unfortunately, Texas has a very, very low [wage for this work], one of the worst in the nation as far as starting wages for workers that work with in-home care.
You made the point that there’s both attendants and disabled people in PACT. There’s a lot of overlap, correct, in that people who are attendants often themselves have disabilities?
Cranston: Absolutely. Many of our members do have disabilities and have lived with their disabilities their whole lives. As well as many of us, as we are aging, are incurring, or are becoming disabled ourselves. And so that’s one of the big issues.
Kafka: One thing that is sometimes not understood by the general public is that when we talk about people with disabilities, it really covers all ages—though frequently seniors, older Texans, don’t always identify as a person with a disability. So, our battles for better wages, more services? It cuts across children with disabilities, young adults, as well as older Texans. It’s not like a person who is old automatically goes to a nursing home. People who are forced into institutional care are people with disabilities, even if they’re 80 years old.
One of the things that’s frustrating to us, but it’s just the nature of the funding, is that the legislature itself pretty much has control of Medicaid-funded home and community-based services.
The sad part about that is that there’s a low-income threshold for most of that. Even though there’s a big need, we can’t change the Medicaid threshold here in Texas. It sort of comes down from the federal level.
One of the main reasons we’re at the legislature is to affect how they allocate Medicaid and Title 20, which is a state block grant funding source.
Cranston: I wanted to mention, also, the demographics of the direct care workers that we’re talking about, the community attendants.
Eighty-eight percent of us identify as women. Seventy-nine percent of us are people of color. We don’t get any sick leave. We have no health care benefits, and so this is the population of workers that we’re talking about. This is definitely a woman’s issue.
So, unless they can get healthcare from a partner, they’re basically forced to purchase healthcare off the Marketplace and pay for it on a $10/hour wage?
Cranston: That’s correct.
Kafka: We’re starting the 89th legislative session. People don’t realize that the Texas Legislature only meets once every two years, so once it’s set, we’re stuck with that level of funding for two years. And so we started the last session at $8.11/hour. And then we got it up to $10.60. So even though that seems like a big jump, you can get more going to work for a fast food employer.
What are some issues you hope will be addressed in the legislature this year?
Cranston: Well, certainly the wage issue that Bob mentioned earlier. We actually are advocating for a $20 per hour base wage. Another piece that we’d like to see—and this actually could happen even without any kind of legislation—we’d like for Texas Health and Human Services to amend the state plan to allow spouses to work for spouses under these programs, to be paid and work as attendants. The reasoning, of course, is because people can’t find attendants, they can’t find individuals to come and work at that $10.60 base wage to start out. So it’s a struggle. So that’s a couple of the issues.
Kafka: The session starts January 14 and they don’t actually set the committees in place till almost the first week in February. And there are so many funding needs in the state.
The good part is that we have a $20 billion surplus revenue that the comptroller just released. But a lot of people are vying for that $20 billion. That’s why our main goal is to bring that $10.60 up to $20 because even at $20 we’re just really competing with the private pay out there, because there’s only so many attendants.
The other part, as Cathy mentioned, is there’s no health insurance. The specter over all the session is that there’s going to be major cutbacks in possibly the subsidies for healthcare from Obamacare, which many attendants are using to be able to purchase private insurance. And we don’t know what the state will do.
The other issue, and you know these are all somewhat related, is accessible integrated housing, because if you can get attendant services you need to have a place you can actually get into. Otherwise you might be forced into an institution. So we’re working in that area as much as we can to encourage more availability. And related to that is this specific money that the state has received called “money following the person.” That money is to help people who are currently in a nursing facility or other institution to be able to use those funds to transition into the community. But, as we said, if you don’t have the adequate workforce, if you don’t have the affordable, accessible, integrated housing, it’s very difficult to get people to transition.
Are these issues on the lawmakers’ agenda yet?
Cranston: There are things we have been working on off-session, and we have a couple of representatives looking into it. We’re waiting on a bill number, for a bill to increase the wage that community attendants are paid. And we want to include language amending the state plan.
Kafka: This session we’re going to be focusing a lot on getting grassroots support outside of Austin. We don’t have high powered lobbyists. Cathy can’t spend every day over there at the Capitol. I suppose the analogy would be crowdsourcing the legislative effort so that if there’s a hearing, we can get people to call in, submit written testimony.
We can show up and turn people out also, but what we’ve learned is that a lot of the grassroots feel left out of the process. With the whole advent of social media, we’re going to try to do a combination of both outreach outside of the Capitol and then some inside the Capitol when necessary.
Cranston: We also collaborate and work with other organizations. A group of us that are working together on the wage piece is the Coalition of Texans with Disabilities. So we are part of that. Also there’s organizations that represent children with disabilities too as part of that. And so we are looking to increase that base wage for all the community attendants or direct support professionals or caregivers, whatever label you want to put on us, those of us that work as attendants. We want to bring up the base wage across all programs, across all of the populations of people with disabilities, to increase that base wage for their workers, not just one specific population of workers.
Kafka: To put it in perspective, the way the federal government sends down money is they have this pot of money for people with intellectual and developmental disabilities, or there’s the Older Americans Act. And then there’s Medicaid, which mostly in Texas is through the managed care system, serving people with disabilities who had their disability after age 22 and older Texans who are also low income.
What Cathy was talking about is that you shouldn’t pit one group against the other. We want you to get services through a functional assessment, based on need, not on the age of onset of your disability or your medical diagnosis.
You alluded to this earlier, but it seems like there’s a lot of disabled people who don’t embrace that label, and you’d have more collective power if more people would do so.
Kafka: I always hate to regurgitate the, you know, rhetoric. But disabled people are a marginalized population. And a lot of people who are marginalized don’t feel like they have the ability to make changes.
At the legislative session it can be difficult, but we want people to start knowing, at the grassroots level, that their phone call, their email, speaking up matters. Even visiting the local office of the legislature. People don’t realize that if they did that, even in small numbers in their local area, they would have a big impact.
You talk to these lawmakers, they tell you that these phone calls and the letters and testimony, that all that stuff matters,
Cranston: It really does. In fact, when we make our office visits, I’ve heard over and over again that they say it would be great if we could get some local calls, because truly, the decision makers want to hear from their local constituents. I mean, more and more, that’s what I’m hearing the reps and senators and their aides tell us, and then you have some that are not so friendly that they just don’t want to talk to you. They’re like, ‘Nope, unless you live in my district forget it.’
Oftentimes, the senators and reps that sit on the Finance Committee or the Appropriations Committee, they tend to forget that they’re making decisions for the entire state. So they’re not just representing their district office. So that’s just one thing I’ve found to kind of be disconcerting in that way.
Kafka: It’s not just disabled people and their family members, the actual community attendant feels that they can’t change. One of the frustrations is that there could be as many as 300,000 community attendants.
Being that union is a four-letter word here in Texas, PACT is trying to get organized, but there is no formal union there, so we’re just trying to send the same message to the attendants as we’re sending to family members and the disability [community]: that you can,affect change, but you have to step up and do it.
What is very scary and carries over to Texas is that the administration [both Trump and Musk’s Department of Government Efficiency] has talked about cutting $2 trillion from the national budget. And we’re worried that a lot of those $2 trillion they’re talking about will be cut from services for people with disabilities and older Americans.
How are ADAPT and PACT and your allied groups preparing for the Trump administration?
Kafka: I mentioned the $2 trillion they want to cut out of our $7 trillion budget.
They always say they’re not going to cut defense, Medicare, Social Security. What you don’t hear then is that Medicaid is on the table and Medicaid is what provides the vast majority of home- and community-based services, durable medical equipment, all types of things for people.
The way we think they’re going to do it here in Texas and around the country is what’s called block grants and or per capita caps. Now that’s jargon, but what that means is that instead of you being entitled to your Medicaid services, we’re going to give you a lump sum, and once you run out of that money, you have to have waiting lists. Currently in the Medicaid program, if you are eligible for the service you get it—that’s called an entitlement. This would do away with that entitlement. The other term, again, policy wonk jargon, but it’s called per capita caps. What they do is cap specific programs at some level one year, and then you cannot go above that cap. And if you do, again, waiting list.
So the combination of either a block grant or per capita cap, it would diminish all the services and Medicaid, and it’s not just older people and people with disabilities. It’s also the programs for women and children, a lot of the healthcare stuff.
So the fear which we’re trying to avoid is people fighting among themselves. We’re having a Zoom presentation, on January 28, talking about the potentially devastating effects block grants and per capita cap could have on disability and Aging Services.
Very important issues to bring up. It sounds like you’re watching closely to see what cuts they’re going to propose and are planning to respond as needed based on where they make their attacks.
Kafka: This is just the reality, and people are going to be shocked, because the vast majority of spending is on things we talked about: Medicare, Medicaid, Social Security, Defense. That’s about 80% of the budget. All the other programs, Housing and Urban Development, the Department of Transportation, Department of Labor, Health and Human Services. All that is what makes up the other 20%. If you take all the entitlements off the table, nothing but services that I mentioned are going to be cut and so it’s going to be really amazing to see what comes down.
But we’re trying to get people ready for whatever is thrown at us. Because we don’t want to go into the fetal position and do nothing. Our theme is ‘don’t mourn, organize.’
Cranston: Right on.
