How Autism Activists Help Families – Interview with Feda Almaliti

Sudden, bad news leaves most of us paralyzed with despair. Not Feda Almaliti. In this inspirational interview she talks about how she dealt with her son’s Autism diagnosis by becoming a passionate advocate for his care. She now uses her talents and experience to help other families dealing with similar situations as an Autism Advocate.

Feda runs two user groups for families:

The Kaiser Spectrum Kids Group and ASD Insurance Help Group.

Help families like Feda Almaliti get critical Autism services by Joining or Starting a Campaign for Autism benefits.

Transcript

Kevin: Hi everyone. My name is Kevin Dewalt, founder of Puzzle Ribbon. We help families begin a constructive dialogue with their employers about getting autism benefits. Today I’m going to interview Feda Almaliti of Autism Health Advocates. Feda lives in California and is the proud parent of three boys, one of whom was diagnosed with autism at 18 months. As an autism advocate, she fights tirelessly on behalf of children like him to get him the treatment he needs. I’d also like to add that Feda is highly respected in the autism community for advocacy work and her deep knowledge about the insurance and benefits space.

Feda, thanks for joining us today!

Feda: Thanks for having me, Kevin.

Kevin: So, Feda, first to start for people who may not know you or who have heard about the wonderful work you do, or heard of you by great reputation, can you tell us a little about yourself and your life, and how you became an autism advocate, why this became your passion?

Feda: Well I think with a lot of autism advocates we’re kind of forced into that situation by our kids being diagnosed. That’s what really made me an advocate because I realized very early on from other parents that you are the best advocate for your child. If you don’t advocate for your child, no one will, or they won’t do it as good as you. So I learned very quickly that I had to do that. In turn, I take my experiences and then help other parents and teach them how to advocate for their children.

Kevin: You say “advocate,” when you think about your life experience, do you remember were there specific things that happened to you that triggered you to say, “I’ve got to stand up and do this”? What happened to you?

Feda: My son, he was the third of my children born, typically developing. No signs of autism. I had other children before, so if I would have seen anything, I would have brought it up to the doctor.. . .

Kevin: You’d know.

Feda: I’d know. I would know. And I actually, to the contrary, thought he was the brightest. I’d keep shuffling him to the doctor. He had a regression at about 15 months. I’d take him back and forth to the doctor like, “Is something wrong with this child?” They’re like “Oh, well, you know kids develop differently. Don’t compare them to your other children.” Yada, yada. They give you that whole spiel.

Then I remember after the fourth visit, I went to the doctor’s office and I’m like, “Look, something is wrong with this kid. Please figure it out and I’m not leaving until you do.”

That was my first moment of being assertive and getting my way after being assertive. It think it was a very . . . and because she ended up doing the M-check right then and there and told me, “I think your son has autism.”

Kevin: As you were in the office she said that?

Feda: As I was in the office, yeah.

Kevin: Oh my gosh! That must have been unbelievable.

Feda: You know it was, it was hard, but I basically got the information, drove home, sat in my car for about seven minutes and cried in front of my house because I didn’t want to go in, in front of my other kids. Then I just wiped my tears. I got inside, and I was like, “It’s time to get to work.”

Kevin: Wow.

Feda: Of course, I had deep rooted feelings afterwards that I had to work through. But that’s pretty much how I deal with things is I try not to perseverate over them too much. He has autism. I’m not going to change that. So now what can I do to help him?

Kevin: Wow, Feda. I’m just trying to put myself in the state of mind of being you in that moment. You’re a mom already with two other kids, so already you’re overwhelmed. So you go in there and you get this ton of bricks dropped on you. I guess it’s just amazing power to your personal strength for being able to deal with it that quickly. I confess that I don’t know if I would have been able to do that.

Feda: Well, I don’t know if I’ve dealt with everything quickly. But that was . . . it was just that point for me. It was like, “I’m not going to sit here and cry about it. I’m not going to go through that process. It’s not going to help him. It’s not going to change anything.”

Kevin: All right. So then you said, “That’s it, I’m going to do something about it.”

Feda: “That’s it. Let’s get to work.” So I went in and get on the computer and was reading all these things from the DAN stuff, the biomeds to . . . basically all this information is being thrown at you, and you don’t know how to filter anything, and you’re trying to do everything.

What happened is I got basically in touch with a parent group, and I realized that they were the only ones that were giving me unfiltered information. Like really they were telling me how it is and what to do. We have a regional center system here in California. You have a case manager that works for the regional center. But they don’t tell you all the services that they provide and how to access them.

Everyone’s trying to hold onto their little money. You go to the school district, and then what do know about the school district? They don’t tell you about all the services they can provide. And then health insurance, that’s a whole other story. It’s basically no one was giving me clear, unadulterated information so I could be able to make decisions about what my child needs.

Kevin: So you were just basically thrust into the world to deal with this, and the traditional sources of information were at best lacking, and at worst deceptive, it sounds like.

Feda: Very much so. I had a son, and then I went to my insurance company. I’m like, “Okay, great. So you diagnosed him, so let’s treat it.” They’re like, “Yeah, we don’t really do that.” They gave me this really nice letter to take to the regional center, basically so I could get services from them, which I did.

But I remember that the whole thing didn’t sit right with me. I didn’t know my rights. I didn’t know anything. It just did not sit well. It just didn’t make sense to me, because I automatically think well if you diagnosed my child with cancer, would you treat the cancer? Why are you sending me to a state organization to get treatment? Why are you sending me to the school district? I just don’t understand.

I went ahead, and I wanted to get my son started on his treatment. Then I’d keep going back and being like, “Well, can’t give him this? Can’t you do that?” Then we’d go through what’s educational versus medical. Then I started reading up on the laws, and really my son had a lot of rights. It was just a combination of . . . I think the providers are well meaning. I think it’s really ignorance on the provider’s part that they don’t kind of . . . they’re not going to recommend something that they know that the health plan doesn’t cover. I think that’s one of the big things, is that when they recommend something, they actually want you to be able to have a good chance of getting it. There was probably zero chance of my son getting ABA through my health plan.

Kevin: I’ve talked about this and some other people gave me some insight on this that I would have had no idea without talking to folks like you, but it’s almost like the system guided you towards treatments they thought you could afford, not treatments that were the best ones for your children.

Feda: Absolutely. Absolutely. That’s where they’re well meaning in that sense, but then they don’t give parents enough credit. Let me make those decisions for myself and for my son. Basically, I was going back and forth with my insurance company. I had a child sitting at home with full syndrome autism. We’re talking about no language, maladapted behaviors. He was really, really intense.

Kevin: Wow. So, Feda, as you were going through all this, for those of us who don’t have children on the spectrum and families who don’t understand how this works, what is this like from the time sink, stress? What are you going through as a parent while this is happening?

Feda: The stress is incredible in the sense that . . . now looking back at it in retrospect, I don’t know of any other disease state that where there’s such an emphasis on, “You have to do it, and you have to do it now!” So I feel like the clinicians were telling me, “You have to start early intervention right now, even before you get the official diagnosis report.”

Everyone’s pushing early intervention. It does work, but there’s so much pressure to get those services, and it’s really hard to access it. So it’s not just that you have to go out and try to get those services for your kid. You have to do it in a timely manner and really quick. So there’s that additional stress put on.

Kevin: On top of it, nobody’s paying for it, right? And you had to figure out, you needed to get it on your own because the medical community wasn’t telling you that you needed it right away because they assume you can’t pay for it.

Feda: Yeah, nobody’s paying. Nobody wants to pay for it. They can pay for it. They don’t want to pay for it. And I certainly couldn’t afford the kind of program that my child needed. I don’t think 95 percent of Americans could afford it. It’s really intensive, one-to-one therapy, and it costs a lot of money.

It costs money, and that’s the biggest issue in your insurance because other therapies cost a lot of money, but they’re more accepted. They’d be much more willing to pay for chemotherapy and these other mainstream types of treatments, and they’re not equating ABA with a mainstream treatment.

Kevin: Can you give me a sense then, you learned all this. You had all these life experiences of your own, and that got you into the advocacy work that you’re doing for other families. Is that something that happened suddenly, or was it just organically, after a while people started coming to you and you started helping them? How did that happen for you?

Feda: I think it happened kind of after a while I was able to break through into certain places that other parents couldn’t or hadn’t dreamed of that. I just basically was able to get the insurance to cover treatment for my son’s autism and a lot of . . . I think thousands of families have not been able to do that and didn’t actually think that that was an avenue that they could pursue.

So after that, after also doing an ABC news story that was pretty widely covered, I think it just kind of happened that I became an advocate. I’d always cared about health insurance issues. Even before I got connected through advocacy organizations, on my own I would go out and just speak out at town hall meetings or forums. But I didn’t think that there were other people like me.

Kevin: Now you know that there are a couple of you, you have a name. You’re an autism advocate.

Feda: There are a lot of us.

Kevin: That’s awesome, Feda. Can you give me a sense of when you’re helping families and companies, what’s the kind of work you do now to help people deal with this challenge?

Feda: I work, and my partner Karen Bestle also, we both work together, and what we do is we help families . . . treatments that they want for their children. But on the other side, we also work with providers and help them also access, get a network with health plans. I think that’s a big missing piece, is that for a long time nobody accepted any type of insurance. So, all the providers did not accept insurance. They wouldn’t even give you a bill, if you had a PPO, to go after your insurance company. So it was a two-pronged approach. Like, “Okay, great. But parents have to get it authorized. But now that they have it authorized, where are they going to get the services from?”

A lot of providers don’t want to deal with insurance, or in the past they don’t want to deal with them because it was so difficult. Helping them with that process has opened up a lot of avenues for families to get treatment, and also for providers to accept insurance money.

Kevin: It’s almost like the system is so complicated and so convoluted, and everybody knows a little slice of it. Nobody’s around to quarterback the whole thing through the process.

Feda: Exactly, and it’s complicated. It’s meant to be complicated so you can’t navigate it. It’s set up that way.

Kevin: Right, yes. I’ve yet to meet anybody who’s described their health insurance system as a perfect system. I’m not sure even the health insurance companies are very happy with it. So, Feda, what are some other resources that you’ve created for families? Where can families go to if they have questions for providers? What else is out there?

Feda: I started the Kaiser Spectrum Kids users group, and it helps out over 500 people at this point. They are all parents. They have Kaiser Insurance and they need help navigating the process. Like I said, when I first was looking for information, who did I get the best information from was the parents. So this is a place full of parents that have the same issues that you do. So they can help. I’ve been through the process. Other families have been through the process. We’re at different stages and we try to help each other out.

I also co-founded the ASD Insurance Health Users Groups. It’s basically for everyone else who’s non-Kaiser. I don’t know how much you know about Kaiser as a health plan.

Kevin: Even if I did, I’m sure there are plenty of people listening who would like to hear the background.

Feda: Well, Kaiser is not . . . I mean everyone’s heard of BlueCross BlueShield. Kaiser is the largest actual HMO in California. But it only operates in about five or six different states. What makes Kaiser different than other health plans is that where, if you’re with BlueCross, you go see your doctor. Your doctor doesn’t work directly for the health plan. They’re just contracted through the health plan, and they’ll bill the health plan for services.

But with Kaiser, it’s different in the sense that the medical group owns the health plan. So, again, where maybe a BlueCross doctor would prescribe ABA for you, and then you go off and you fight with the health plan, so they don’t get involved in the middle of that, whereas with Kaiser, it’s different. The doctors actually own the health plan.

Kevin: Since the doctors own the health plan, so what’s the implication of that in terms of how families get reimbursed and paid and getting these services covered?

Feda: By the sheer fact of it being an HMO, they can’t get reimbursed. Everything has to be pre-approved. So you need prior authorization for everything. But you won’t even get a doctor to recommend treatments. So that is a big barrier. And then if you don’t have money to go out and get an independent doctor to recommend it, you’re not going to get within the Kaiser system. I think that’s the biggest problem.

Kevin: So families have to work within each other to figure out how do you find ways to work around this system. Is that the basic issue?

Feda: Exactly. Honestly, it’s a great system. I’ve been a Kaiser member for almost 28 years now. So I understand the Kaiser system. I like how it’s integrated. I like that all my medical records are electronic. I like that if I want to see a podiatrist that my doctor can just send a note to the podiatrist, and they call me up and set up an appointment. So I really like that.

But then I just didn’t like the way they were treating autism, and I wasn’t prepared to change health plans. I’m like, “No, I’m going to stay here. You’re going to change.”

Kevin: There you go. Well, Feda, thank you so much. This has been incredibly informative for me. And on behalf of all the folks that you work with and help, thanks for what you’re doing. I mean it’s got to be tireless, tough work at times. There must have been moments where it’s incredibly frustrating and you just want to give up and go do something else. But you obviously care a lot about people, and know a lot about digging into a hard system that nobody else wants to do this. So thank you from our country for doing what you’re doing, and I really appreciate this.

Feda: It’s a labor of love, Kevin. That is the one thing, as hard as it gets sometimes, I really love what I do. When I can help the parents, and help the kids that’s really what makes it all worth it.

Kevin: Well, that’s wonderful, Feda.

Feda: And thank you.

Kevin: Well, no, thank you for all the advice that you’ve given me, and for what it’s worth the people speak so highly of you. Right when I was just starting this project, I heard from five or six people, “You’ve got to talk to Feda. You’ve got to talk to Feda. You’ve got to talk to Feda.” So it was a real pleasure to have the opportunity to be able to hear your story and hear how you got into it. Thank you very much for your time.

Feda: Thanks, Kevin.

Kevin: All right, have yourself a great day.

Feda: Okay, bye.

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