What’s at Stake for People with Disabilities After Massive Medicaid Cuts?

Erika Hubbard:

Hi everyone and welcome. Earlier this week, Jim Lange sat down with Dr. Josie Badger for an eye-opening conversation about the nearly $1 trillion in Medicaid cuts recently passed under the OBBB Act. For millions of Americans with disabilities, including those receiving SSI or SSDI whether or not they currently qualify for Medicaid, these cuts threaten access to essential health care, home, and community-based services, and threaten the programs and providers that make independent living possible.

Josie helps us understand what's at stake, clears up some common misconceptions, and offers practical steps that people in the disability community and their families can take to prepare and protect themselves.

Dr. Josie Badger is a nationally recognized disability rights advocate, speaker, and change maker who has dedicated her life to empowering individuals with disabilities, shaping policy, and advancing equity and inclusion at every level from grassroots advocacy to national leadership. She's the founder of J. Badger Consulting, providing youth development and disability consulting services, and she also serves as the national transition director for the SPAN Parent Advocacy Network, working closely with RAISE and the National Healthcare Transition Center for Youth with Intellectual and Developmental Disabilities.

In 2012, Josie was crowned Ms. Wheelchair America, leveraging that platform to amplify the voices of people from across the disability community. She holds a doctorate in healthcare ethics and brings not only a deep knowledge but invaluable personal perspective to discussions around disability rights, healthcare policy, and community advocacy.

During this insightful interview, Josie shared her own experiences navigating Medicaid and provided critical clarity on how the recent OBBB Act cuts could affect individuals and families in the disability community. She offered practical advice for advocacy, community collaboration, and proactive planning.

This conversation was eye-opening, a bit unsettling, but ultimately offered a measure of hope along with some clear practical guidance. And as a special resource for our viewers, we're offering a free hardcover copy of Jim's book, Retire Secure for Parents of Child with a Disability which he co-authored with former US Commissioner of Disabilities, Deborah McFadden and expert special needs trust planning attorney, Julianne Steinbacher. Details on how to request your copy will be provided at the end of the video. So, without further ado, let's dive into Jim's conversation with inspiring and unstoppable Dr. Josie Badger.

Dr. Josie Badger:

Thank you so much.

James Lange:

Thank you, Erika.

So, Josie, you've been doing this, in addition to your PhD and extensive, let's call it academic training, you’ve actually been in the field working with a lot of people who have Medicaid benefits. And so, could you share before we get into the nitty-gritty and the changes your experience of how important these benefits are for part of the population that you serve?

Dr. Josie Badger:

Of course, I look at this as a professional, as an individual who receives Medicaid, and as a foster mom whose kids have had disabilities and how important it was to them. And so, I'm coming from this perspective of how important it is for the family and for the person with a disability and for society at large.

For me, I received Medicaid growing up and it helped to cover things while I was in school, of course. Then as I got older, it helped to make sure that the transition off of my parents' insurance and into adult life really went as smoothly as possible.

For me, I have a disability called congenital myasthenic syndrome, and it's really rare, but in summary, it fatigues all my voluntary muscles, including my ability to breathe, move my eyes, talk, and so, I've had nursing care since I was just a few months old. It has allowed me to have the nurses, the personal care attendants, a ventilator, a wheelchair―allowing me to be able to live at home, go to college, and have a business. So, Medicaid is pivotal to my life, but also to the people I love, including my family and those with disabilities.

James Lange:

Well, alright. So, you also have a lot of roles. You're a business owner, you started a nonprofit, and you also are the Director of the RAISE Center, which does a lot of advocacy work. What are some of the misconceptions that people have about Medicaid's impact on lives of individuals with disabilities? Or even if you want to personalize it, what you think your life might have been had you not had this support from Medicaid.

Dr. Josie Badger:

Sure. So, we hear many, many misconceptions, and I think we also see those misconceptions playing out in some of the policies that are rolling out right now. So, with RAISE, it is the national technical assistance for parent training and information center specifically around youth with disabilities transitioning into adult life. And as I mentioned, for a lot of young adults, Medicaid is that next step, becoming an adult, maybe living on your own, but is really insurance that often takes over when a family's insurance no longer covers because the child is aged out.

And under RAISE, working with young adults with disabilities or adults with disabilities, we hear over and over that they have been told by professionals―whether that be medical doctors or county assistance offices, which is where our Pennsylvania Social Security benefits come through―“Oh, you can't work. You'll lose your Medicaid.” And that's not always true. There are lots of programs out there that will help you be able to keep your Medicaid. For a lot of us, that is our lifeline.

For folks who are on Medicaid based on disability, we would be either in a nursing home or other facility without this level of care. And so, we know that there is no private insurance in the country that provides long-term support services―like the nursing care, the personal care attendants (services like that). And so, I think a lot of folks feel like, “Oh, an individual can just go get a job and get their employer's insurance, and they'll be taken care of.”

Unfortunately, for us to be able to survive, we have to often stay on Medicaid. For me, for example, I believe my care and I'm a really healthy person―even though I rely on a wheelchair, ventilator, and 24-hour care―my care costs are probably near a million dollars a year. I discovered when I was graduating with my doctorate that I was looking at all these jobs I could apply for. I was like, "Oh my goodness. I can't take these jobs because I'd lose my benefits." And I realized that I could not afford to be successful, and that is why these benefits are so critical but not available in other pathways.

James Lange:

Well, we're looking at the OBBB Act, you know, the One Big Beautiful Bill Act and we're talking about a trillion-dollar cut in Medicaid. How are these enormous cuts going to impact individuals who are currently receiving SSI or SSDI.

Dr. Josie Badger:

Great! So first, I want to be clear, we don't fully know (no one fully knows) how this is going to roll out. We also know that each state is going to look very different.

One good thing that was in the bill―for programs such as ABLE accounts, which are savings programs for people with disabilities that do not affect their benefits―there were some permanent laws put in place to protect those accounts.

But the big cuts and how we're seeing this trickle down is although we know that there were not direct cuts to folks who receive Medicaid based on disability, we know that there are going to be a lot of folks who are impacted. Might be those individuals who didn't necessarily get Medicaid based on disability but have disabilities, but maybe they were covered by expansion. Maybe they were only able to work 10 hours a month. Those are the folks that I think will feel a lot of these cuts. We look at how this money is going to trickle down.

We know that there are cuts to overall federal match funds for services. We know that states are not going to be able to fully cover that difference. So, I am seeing that there will be additional co-pay costs, deductible costs when that's a thing for them, and looking at less service providers that can stay open because the reimbursement rates for things such as wheelchairs will be much lower.

I also am very concerned about waivers. Medicaid waivers are called waivers because they are for individuals who would otherwise have the right to a nursing home. They are that disabled that they would be eligible for nursing home level of care, but they use a Medicaid waiver to then be able to live in their own homes and live in the community. Although that service allows folks to live in the community and is much more cost efficient for the states and everyone, it is the largest budget item for Medicaid expenses in most states. And so, I see a potential cut in services that are provided by Medicaid waivers. And I also see the chance of longer waiting lists for those Medicaid hubs and community-based services.

James Lange:

Well, that sounds exactly the opposite of what you want. If it's less expensive to provide for somebody at home than to provide for somebody in an institution, they in effect have just cut the way to save money. So even if you're looking to save money, it sounds like this was a pretty bad way to do it.

Dr. Josie Badger:

It's going to be tricky and it's going to come down to the ways that states decide to handle this. Those cuts were not directly from the federal government saying you have to cut home and community-based services, but when you look at the state budgets―that's the largest pocket of money―I believe those are at greatest risk. And you're right. You're absolutely right. It is not with common sense that these decisions may come down, but I believe states are going to be trying to figure out how to make the difference and hurt the least amount of people, and they're going to have to make some very hard choices.

James Lange:

Well, I'm also concerned about maybe people who would otherwise normally qualify for SSI or SSDI, but one of the things that you mentioned and I read this on your website was that instead of having an annual check to see if people are still eligible, that there is going to be a semi-annual check, and that is both for work requirements and medical requirements. Could you answer a question that I personally have and what a lot of parents who have a child who is receiving SSI or SSDI have. Do we have to fear that every year we're going to have in effect a subsequent court case or at least some kind of audit if you will for our child to maintain their Medicaid standing or SSI or SSDI standing?

Dr. Josie Badger:

I fear that is going to be the case. We know that the work requirement piece is going to be six months that people will have to reapply and send in all their information. If you are somebody who has done this paperwork, whether it's for yourself or for someone else, it is time intensive. If you miss one number, you could be disqualified. If the office puts the information in wrong, then they might stop your Medicaid coverage and then you have to go through the appeal process. That is one area of concern.

I think I also am concerned about the job cuts in these areas. There are not enough people working for Social Security (the local offices) and Medicaid to really be reviewing all this new paperwork and renewals and appeals. And so, I'm very concerned that they're going to get backlogged and the chance of getting accidentally cut from services just increases.

James Lange:

That's so scary for me. And let's say I have some financial resources, but for parents who don't have financial resources, this must be petrifying. And not only petrifying for us, but I learned this through my daughter. I didn't realize how worried about money she was. So, this is a scary thing.

And some of the other things going on is doctors not having the Medicaid reimbursement that they did. Then all of a sudden, there is motivation for doctors to see no one except full-pay patients so that a Medicaid, SSI, or SSDI person who is living on that will just not be able to get care. You know, go try to find a dental appointment, for example. Is this another one of your fears―that it is just going to be much tougher to see any doctor partly because of this?

Dr. Josie Badger:

Oh, my goodness, I think it is doctors, dentists, ophthalmologists who are rarely fully covered by a Medicaid anyhow, but I think we're going to have fewer providers. And I'm not only saying doctors, but I’m also looking at durable medical equipment companies and medical supply companies. I do not believe that they are going to be able to continue to provide at least the same level of care as they do now―if they're able to stay open in the first place.

James Lange:

Yeah, I think that this is really important. Let me switch it because I know that you're very interested in the transition from childhood to adulthood and maybe one of those transitions is a first-time job. Do you have some concerns about people with some type of disability being able to be trained and get into the job market?

Dr. Josie Badger:

I think there are two things here. One is and I hate to say this, but I am fearful for the individuals who currently receive Medicaid through Medicaid buy in for workers with disabilities, which is something allowed through the federal government, but that most states have some version of that allows folks who would otherwise be qualify for Social Security and Medicaid to buy into it if they are working and over the income and asset levels.

I fear that that is a program that may be on the chopping block. And so, you know, I've been honestly telling folks if they can get into basic Medicaid, even if that means taking a slight pay cut at this point, that might be something to consider. Or if they believe that they won't be eligible for Medicaid based solely on disability, then they need to move forward and try to get those jobs.

The work requirement is 20 hours a month, and so, I think that we need to start looking at how we can get businesses to be open to working with folks with disabilities. And we know factually that most jobs come from relationships―not from some online program or some business― but from connections. And so, we need to develop those relationships with the businesses in our area to try to increase disability employment.

James Lange:

Well, that that makes so much sense to me, and I know the nature of some disabilities is some type of problem with social skills. So, it might be less common for somebody who is on the autism spectrum, for example, to have a close friend or associate who is in business.

So,I actually didn't look at it that way, but let's call it not a government thing, but something that we have to take into account.

So, you mentioned the states picking up some of the slack. Is this something that we have any control over? I noticed on your website that there was something specifically for Pennsylvania, and I know that you went to Pennsylvania schools. I think you were at Pitt and Duquesne if I remember right.

Dr. Josie Badger:

Right.

James Lange:

Yeah. So, I'm a Pittsburger, but I have a national audience now. I started in Pittsburgh and that's where I'm calling you from. But do you fear that the states are not going to be able to make up the difference and are there going to be some states that will and some states that won't?

Dr. Josie Badger:

Here in Pennsylvania, Governor Shapiro has been very clear that Pennsylvania cannot fill the gaps that the federal cuts will create. That has been very clear in his messaging.

The states that are going to be hit the hardest are the ones that have expanded Medicaid coverage. There's going to be a pretty strong cut there, and Pennsylvania is one of them and especially those who have covered undocumented immigrants. Those states are going to see the worst cuts by far. Some states are going to get cut more, some less, but all of them are going to feel the impact. And I don't foresee any states being able to make up that difference.

James Lange:

Well, you actually kind of―I mean, I knew it was bad―but you kind of scared me even more. Can I be practical for a minute? Can you tell some of our viewers what they could do and if that includes going to your website. I'm also interested in the nature of your services because it looks like you get some revenue from the government which I don't know if you can count on, but if you could give us some idea of what we as consumers can do because I read a really nice summary on your website. Please feel free to give people your website and any other contact information in addition to the separate nonprofit that you that you run.

Dr. Josie Badger:

Sure. I think we need to be thinking about this on many levels. I think we need to be thinking about it as advocates and as community members who just care a whole lot whether you have a loved one with a disability that this will directly impact or not. We're going to have to start thinking outside the box. And whether that is working with churches and community groups and any local groups to start to figure out how a community can care for those who have been relying on Medicaid.

We need to be thinking about jobs and how we can ensure that people can keep their Medicaid. And as I'm looking at hiring folks, I'm thinking about, “How is this person covered by insurance because I hire people with disabilities.” Do they need to make sure that they reach those work requirements or stay under them? But I think we need to be staying on top of all of this information that is honestly constantly changing.

I will recommend Disability SCOOP. SCOOP often has some really good information out there. The American Association of People with Disabilities―they are in DC watching it as it happens. I would highly recommend looking at that as well.

In my business, something that I've truly just felt the need to do is to host these Medicaid trainings. And so, we're doing state ones, we're doing national ones, but it's really to help advocates, family members, caregivers, and people with disabilities to learn about what is Medicaid. What does it impact? Am I affected? How do we speak out about this?

One of my goals is to identify, at least for Pennsylvania, about five different areas that Medicaid covers that I believe people with disabilities will die if these services are not provided. So, we're going to be creating these policy briefs and bringing them to the state government to say, “Yes, keep as much as you can, but looking at the numbers, these are the things that allow people stay in their homes and to be able to stay alive.”

As for my business, J Badger Consulting, we really focus on ensuring that people with disabilities can have a full range of opportunities, which is the true definition of justice. And I think sometimes we have different definitions of justice, but in this situation, I want people with disabilities to have the right to get married, to have a job, to be a foster mom, and so that is what we work towards. And just as you mentioned, we rely on some previous state monies. We have donations, but we are worried about the future of this. We're seeing proposals to cut funding to disability rights programs in each state and centers for independent living. And as we're seeing this funding being cut, we're seeing more and more gaps in the protection of people with disabilities.

I know that my business will never be able to fill all those gaps, but I'm hoping to empower a cohort of individuals who can speak about the issue, who can advocate, but also be ready to pivot as we move forward.

On a personal note, and this is a little bit different, I think that people who rely on Medicaid need to be thinking ahead. Most of these cuts do not come for a year, two years, or longer, and I would be thinking very hard about whether I needed a new wheelchair within the next couple of years, whether I have sufficient supplies, and be just really thinking about whether you've been to a specialist that you need to see―in case these cuts come and affect your life directly.

James Lange:

Alright. Well, this was wonderful. Some of our listeners are listening in their car or they're not taking copious notes. You gave some great resources. Could you give perhaps your website so that if people have said, “Okay, I am interested. I do want to help―whether it's wearing a t-shirt or whether it's giving money or volunteering or whatever it is.” Could you give them one source that they could go to and either find more resources or find out more about you?

Dr. Josie Badger:

Everyone, I'm going to give you my business website and then even if you don't find what you need, please drop me a note on there. I get all the emails directly. The website is https://JBadgerConsulting.org.

James Lange:

Well, it's a good resource and by the way, I will personally attest to your getting back to us quickly on email. So, again, I want to thank you so much for your time. You've given us some great information. If we can do anything for you, we're delighted to do it. And if you have any other last things that you want to say or things that I didn't ask that you think are an important message, now would be a good time. Or if you think, “Hey we got the gist of it,” as I know that you have another appointment in a few minutes.

Dr. Josie Badger:

You know what, I think what I want to leave everyone with is to not give up hope. The disability community has fought since the early times for access for resources. We have our own disability rights movement and disability rights leaders. We have fought for this before, and we can continue to, and it all comes down to activating being one unified voice saying we can't forget those individuals who cannot speak for themselves and for the most vulnerable in our society. So don't give up hope. We're going to get there. I hope that you all pick up the charge and speak to legislators, talk to others with disabilities, and get involved.

James Lange:

Thank you again so much, Josie. This has been a wealth of information―very valuable for our audiences.

Dr. Josie Badger:

Thank you.