Today’s interview is with Dylan, an Orange County resident with severe mental health problems, including depression. Dylan is on Social Security Disability Insurance (SSDI), a topic we’ve covered before, as well as Supplemental Security Income (SSI) and Medicaid.
All of this means that state has determined that Dylan is too sick to work. Yet these programs don’t offer enough help for Dylan to really improve his life. Getting to see mental health providers has been hard enough that he has simply given up; he says he needs ketamine therapy, but has found it’s “just not available” to him on Medicaid. Most of the providers listed on the Medicaid program’s website weren’t actually taking patients—though the problem of “ghost networks” affects privately insured patients seeking mental health treatment, too. He needs a bone graft on his front tooth, which Medicaid won’t pay for. And it took him months to see someone about new, painful swelling in his hands; even then, it was only over FaceTime.
Since we spoke in February, Dylan has been diagnosed with dermatomyositis, a rare condition that causes muscle weakness and rashes. The muscle inflammation is making it hard for him to play guitar, which he loves and which improves his mental health. Soon he’ll have an MRI on his thigh to check for muscle damage; it was ordered six weeks ago, he said. He also told me he’s “had trouble getting my lungs tested (Interstitial Lung Disease is a risk in DM),” and “two referrals for lung doctors didn't work.” He’ll try the third soon; hopefully they’re closer than the dermatologist he saw, who was 40 miles away. (Now imagine trying to get there without a car, or, indeed, driving that far with painful, swollen hands.)
The difficulty poor patients have in accessing specialists and tests like these is well-established, including in California, where Dylan lives. Last year, the Los Angeles Times reported on the long, sometimes fatal waits that public hospital patients experienced in LA County, one county north from Dylan. A 2017 study found that Medicaid patients also wait longer in the office themselves—they were 20 percent more likely to wait 20 minutes or longer, as Dylan experienced at the dentist. A 2019 study found that Medicaid patients were 3.3 times less likely to successfully schedule a specialist appointment than privately insured patients.
Dylan lives at home with his parents, and pays rent to them out of his Social Security check; he feels guilty for living at home with them, he said, and paying them rent makes him feel better. I asked him how it would change things if his check came with a housing voucher, and he said it would be a huge help: “That would be so nice, to have some sort of support.”
This interview, conducted in February, has been edited and condensed.
Dylan: I have three broad areas where I'm having difficulty navigating the healthcare system: Mental health, dental stuff, and the physical side of everything—it just all gets lumped together. I guess I'll start with the mental health thing. I remember I used to have private insurance a long time ago, when I was on my parents' insurance. I do have some experience with decent healthcare, or at least better healthcare than what I have now with the Medicaid type thing. I have pretty much just given up trying to access mental healthcare through Medicaid. It's so bare bones. There's so few doctors in the first place. It's been a couple of years since I have really tried to pursue mental health care, it's been probably just discouragement or whatever it is.
Just a little bit about me: I'm 35, I live with my parents, I have major depressive disorder, maybe bipolar too, PTSD, trauma history, self-harm abuse history. I've been hospitalized many times for psychiatric stuff, attempted suicide. I've tried 40 different medications. I've done ECT. So I've pretty much seen the system inside and out. What is inaccessible to me is the more cutting edge treatments. Medicaid will pay for the absolute bare minimum things like antidepressants or stuff like that, but I need like, ketamine therapy, more cutting edge stuff. And it's just not available to me. It's something that holds me back, I think from being able to be healthier and more functional and seek employment, ultimately be a more productive citizen or whatever. But I also have a half brother who is a little bit older than me who has schizophrenia. And he is also pretty disabled and stuck with the poor healthcare that he receives.
Sick Note: Does he live at home too?
Dylan: No, he lives in a group home type situation in North Orange County. We're in South Orange County. I wish he could live here, we just don't have the space for it. A typical day for me is just, wake up, play with my pets, I try to meditate, do lifestyle stuff to keep my depression at bay, like exercise and stay sober from alcohol. I can just barely control it with lifestyle stuff, but for more advanced therapy, it's catch 22—I need money to access treatments like that are more novel or not covered under Medicaid and I cannot earn money because I am so disabled by the mental health symptoms that I experience every day.
We could go on and on about the mental health side but I do want to talk about arthritis. I have some sort of autoimmune thing going on with the joints in my hands and it's causing quite a lot of pain and discomfort. I've had to wait so long to see a doctor—I still haven't really seen the doctor in person. All this started in November. I had some sort of cut on my knuckle on my right hand and the joint got inflamed and swollen, and it spread and different joints in my right hand started swelling. Fingers looked like sausages practically. Didn't know what was going on with that. Finally, I had to wait until January 20, I believe for an appointment to just FaceTime with a physician's assistant.
Sick Note: Not even a doctor.
Dylan: Yeah, that's the thing. I don't know if this is the same for people with PPO insurance, but I rarely talk with an actual MD, it's always nurse practitioners, it's always physicians assistants, or paraprofessionals.
Sick Note: Yeah, that is common. That's always been my experience with fancy employee provided insurance—there will be an MD or two at a practice but most of the people who actually have available appointments are nurse practitioners or physician's assistants.
Dylan: It's pretty frustrating, there's a pretty dramatic difference in the amount of schooling. So I had to wait a couple months just for the FaceTime appointment and then they ordered some blood tests after they saw the severity of what was going on. I've yet to see the dermatologist, I go in on March 8th, I believe.
Sick Note: That's a long gap.
Dylan: It's a 40-plus mile drive from my house to the place.
Sick Note: Does the swelling make it hard to do physical things like using your hands for driving, for example?
Dylan: Absolutely. I can't play guitar, I stopped playing guitar. I can't do a lot of stuff like tying my shoes is tough, pressing the buttons on the microwave, just anything that requires like dexterity or finger strength. I haven't been able to get a diagnosis either. It might have something to do with celiac disease, I have celiac disease. It's messed me up, it's caused the mental health to nosedive a little bit, the stress and everything. It just feels good to verbalize this to someone else. It's nice to say this to someone because I have to suffer alone and in silence.
Sick Note: You mentioned the other thing was the dental stuff?
Dylan: My front left tooth, going back when I was 12 or 13, I got the tooth knocked out, it was a permanent tooth. I had nicer insurance, I got the metal post implanted into the jawbone and then the crown on that and that's the gold star standard treatment for missing permanent tooth. Actually, dental implant is the best thing but a crown is still... Long story short, Medicaid doesn't cover crowns, doesn't do anything with periodontal extreme stuff like that, they just yank your teeth out. I mean, you got a problem with the tooth, they yank it out. And that's not the way—ideally you want to preserve tissue that's there. You can technically pull out a tooth if it's infected and get rid of it, but there's a gap there, you're losing bone, your other teeth are affected. It's disfiguring, it's one of my front teeth also, which is a bummer.
What they're going to do is pull the tooth, yank it out, and then they'll do a bone graft. I have to pay out of pocket for the bone graft $280, which doesn't sound like a lot. I'm going to ask my parents if I can pay them maybe a little bit less rent this month to cover that and move some things around. Just to get a bone graft to prevent disfiguring bone loss and other damage that they they should cover. I mean, how difficult would it be? How much of a burden on the taxpayer would it be to have them just cover this dental surgery? It's an annoying thing. Teeth are a very obvious marker of class in America, if you have money you can afford a nice grill. And if you are struggling, it's pretty obvious.
Sick Note: The dentist you see, do you like them?
Dylan: No. I mean, they're very unprofessional, the office seems pretty dirty. I was supposed to get x-rays, they need full mouth x-rays to the implanted denture thing to replace the tooth and they made me wait over 20 minutes in the waiting room, they scheduled me wrong or something. And I just walked up and left out of disgust and rescheduled it. So yeah, they don't have their shit together over there.
Sick Note: The level of choice you have in terms of providers for Medicaid, I can imagine that for dentists, that would be especially difficult.
Dylan: Oh, absolutely. I think I was just assigned to this one. I'm in South Orange County, and most of the lower income stuff—I'm living with my parents, I wouldn't be able to afford living here otherwise—but most of the stuff for lower income people is in North Orange County. So there's already just fewer doctors down here that will accept Medicaid in the first place. So that further reduces the choice. But even in in North Orange County, even in places where Medicaid is more commonly used, it's bare bones, it's just nothing. So few doctors accept the low reimbursement.
Sick Note: Going back to the mental health, can you talk a little bit about the process of finding providers and getting matched with people for that?
Dylan: Well, I have CalOpitma, they're the manager, administrator, whatever of my plan. Their website is just so useless. I've heard of this with other people with their insurance, the physician database of doctors that are accepting the insurance and taking new patients is rarely updated. I've heard of that with other people that, especially with CalOptima. They'll give you a list of what seems like a bunch of doctors, and then you go through the list and call through each one of call each one of them, and to a person, they're not taking new patients, not actually on the insurance, whatever. They're just absolutely useless in terms of being able to... Well, it's partly out of their control, I guess, because the reimbursement rates are set by politicians, so it's certainly difficult, finding a doctor.
Sick Note: What do you have to do to prove your eligibility? I think in California, is it once a year that you have to reassert how poor you are basically?
Dylan: I haven't had to do that so much because I'm on Social Security. The eligibility determination is like once every three or four years, I got it two years ago.
Sick Note: And so in terms of getting disability, can you walk me through how that went? Because I know that's another thing that people struggle with.
Dylan: I went to a law firm that specializes in helping people get SSDI. That was something I found online. I can't remember if I applied before without the law firm and was rejected or just made the initial approach with the lawyers but that was the strategy that I used. I had a pretty long documented history of hospitalizations and suicide attempts and stuff like that, so it was not super difficult to prove to them that I'm unable to work. For me, actually, the process wasn't too bad. The real problem I have with social security disability is just the the little amount of money that you're expected to survive on. I get SSDI and SSI, and every month that comes out to a little over $1,000. And if I didn't have my parents to rely on and let me live with them for 460 a month. I would be in the group home, I'd be homeless, in a much tougher situation, but not everyone has family with a pension.
Sick Note: In terms of your family's financial situation, are we talking middle class?
Dylan: We're middle class. I would say we were upper middle class, I grew up in much nicer suburbs and larger houses, below ground pools, stuff like that. And then the financial crisis happened, and kind of had to downsize a little bit. But my father is retired. He was a public school teacher for 30 plus years or something. So he is union, he has a pretty nice pension. So we live off of that. I live in Aliso Viejo, we're renting this house for I don't know how much per month but Aliso Viejo is a very nice area, South Orange County. I live in a really nice area—it's kind of a strange feeling because I'm surrounded by wealthier people or whatever. But I myself have quite little to my name and I don't own very much. It's kind of strange.
Sick Note: You mentioned that you pay rent to your parents, how does that work? And how do you feel about that?
Dylan: My dad's 72, my mom is 61. They're getting older, I don't like being at my age, relying on them so heavily. I pay them rent every month out of like, guilt. And I don't want to—I feel like I can't live here and not contribute anything. But that being said, I do pay the 460 a month, and they pay for a lot of bills, the food is covered. I have enough money for myself to afford, I use cannabis to deal with everything, the pain with the arthritis. It really helps, I have enough to afford that. I wish I was living on my own, I wish I was supporting myself, I wish I was more functional, and this is this is where I am right now. It feels good to pay them that money, even though I'm probably taking more than that.
Sick Note: And of course 1000 bucks a month wouldn't get you anything in Orange County. I mean, you'd have to move to like Wyoming.
Dylan: I've heard of people on SSDI actually living in Mexico or living abroad, there's some crazy strategies to stretch it. But yes, anywhere in pretty much America, it's gonna be impossible.
Sick Note: If, for example, there was a policy where if you were getting SSDI, you got a housing voucher or something like that, how would that change your life?
Dylan: Well, that would be huge. I would love to have my own place. I'd love to. I don't know about my level of functioning, and I feel like I would have to get to a better place with my mental health before I would be able to fully live independently. But yeah, that would be so nice, to have some sort of support with being able to live—I'm pretty pessimistic about any of these programs getting more generous under Biden. […] These are intentional choices by elites to make these programs threadbare and not generous as possible, to shore up their own economic position.
Sick Note: One more thing I wanted to ask: You mentioned having pets, what kind of pets do you have?
Dylan: I got a dog. Her name is Mia, she's about 14, 15 years old. She's getting up there. And my mom has a cat that I've pretty much adopted, hangs out my room. Both the animals, especially taking care of my dog, it's a purpose to get up in the morning. It's a very healthy healing thing. I love animals.