I hope you’ll enjoy listening to this interview as much as I enjoyed creating it.  My guest is Dr Sabrina Freeman, author of The Complete Guide to Autism Treatments.

She received her doctorate from Stanford University in 1995.  Dr. Freeman is a social scientist and author of the popular books, Teach Me Language and Science for Sale in the Autism Wars, and a tireless advocate for the rights of children with autism to science-based treatment since 1996.

In 2002, she was awarded Queen Elizabeth’s 50th Golden Jubilee Medal, for advocacy work done on behalf of children afflicted with autism, Dr. Freeman lives in the Pacific Northwest with her husband, son, and daughter with autism.

In this interview we talk about the role of science, evidenced-based treatments, and even touch on some controversial topics like vaccines.

Have you ever wondered what inspires supremely talented people to become Behavior Analysts? Jane Howard and Coleen Sparkman, directors of Therapeutic Pathways, provide insight to the answer in this interview.

Since 1996 Therapeutic Pathways has helped over 500 children on the Autism spectrum with intensive behavioral and language based therapies at their offices in Northern California.

Transcript

Kevin: Hi, I’m Kevin Dewalt, founder of Puzzle Ribbon. Today I’m going to interview Jane Howard and Coleen Sparkman, directors at Therapeutic PATHWAYS. The company provides intensive behavioral and language-based therapies for children diagnosed with autism and other pervasive development disorders. Therapeutic PATHWAYS was founded in 1996 and has helped over 500 children on the autism spectrum.

Jane and Coleen, thank you for joining us.

Jane: Hi.

Coleen: Thanks for having us.

Kevin: First is, I’m just curious to hear your personal stories. How did you get into ABA? How did you get into this field? What’s your life journey that brought you here?

I’ll ask Jane to go first, since you’re sitting on the left.

Jane: I had the opportunity to work with adolescents with autism when I was in college. At that time the recommendation to families, when they had a child who was diagnosed with autism, actually was to institutionalize them. And so, I was working with adolescent boys who had been institutionalized really since they were small: ages three, four, and five.

That was really my first experience. Actually, it was one of the first programs in the United States that used ABA principles to try and improve the functioning levels of these children with autism. They had other children with other developmental disorders as well.

From that point on, I never really looked back.

Kevin: Were you inspired by a particular child’s situation, or just the fact that you felt that our society was abandoning these people?

Jane: Each one of the children was very compelling in their own way. I wouldn’t say that there was a particular child, but 30 years plus later, I remember each and every one of them, and I remember what they taught me, in terms of how to best help them.

It’s been a fantastic experience for me, for Coleen, and other people, to be able to work in such a way that institutionalization is not what is recommended these days, and you have an opportunity to see what effective, science-based treatment can produce, with children that otherwise would not have had these opportunities.

Kevin: Wow. That’s fantastic. Coleen, I have to ask you the same question. Please tell me your story.

Coleen: Mine was inspired and pushed by a particular child. I got out of my graduate program in 1979. At that point in time, the incidence of autism was one in 10,000. I had never seen a child with autism throughout my six years of university.

Got into a private setting, as a speech pathologist, and one of the first three kids I saw was a four year old female with autism. I worked with her for about six months, doing what I had been taught to do in terms of teaching a child how to talk, and really had no success.

Fortunate enough to be in California, that parent happened to hook up with the Lovaas Institute at UCLA. Took her there, and called me after two weeks, and asked if I would fly down there. I flew down there; the child was talking.

I got to watch Dr. Lovaas working with her. I was never one of those people who thought I knew everything, coming out of a master’s degree program, but I realized that there was a big chunk missing.

Kevin: I was one of those people but go ahead.

Coleen: That goes along with the field, maybe.

That started my search for more effective treatments than what I had been taught through six years of university training.

Kevin: Just to dig a little deeper on that one question. What was the difference between what you’d been taught and what you observed? What was the disconnect there?

Coleen: Sure. As a speech pathologist, most of what I had been taught was child-directed therapy, a lot of setting up language opportunities, exposing the child to appropriate models.

Certainly, some initial direct modeling, but a complete disconnect between the real core deficits of autism, being this inability to imitate, and this understanding of the behavioral principles, so appropriate use of reinforcement, an ability break down skills into the smallest units. I was lacking quite a bit, actually.

Kevin: You were laughing quite a bit when you were in the university setting, because you didn’t think it would work?

Coleen: Sorry, lacking. Lacking skill sets and training. I was smart enough to learn, but I had to go and seek that post-master’s degree, absolutely.

Kevin: Was it just that you saw a particular child who advanced far more than you thought was possible, based on what you learned at university?

Coleen: In a short period of time, absolutely. To have a child go from, basically, head-banging on the wall during my sessions, to sitting at a table appropriately, responding to commands, and imitating words, and using some words spontaneously – within a two week time period – was just astonishing to me.

Kevin: I guess what I find really interesting about both of your backgrounds is it was the science, and the evidence that you saw coming out of these therapies, that got you fired up about this, more than just the problem in the abstract. Some people are drawn to this because the problem’s so bad, they’re in the search, but for you it sounds like it was the science that drove both of you into this.

Jane: The potential solution to these really compelling problems, I think, really helped provide a road map to what the future might look like, and what the interventions might look like. That was it for me.

Coleen: I would say for me, the understanding that I had a very limited time with these children. In some cases, it was private insurance paying for speech therapy, at the time, or parents paying privately. I had an ethical obligation to ensure that what I was providing was appropriate treatment.

Kevin: Since you got out of school, and since you’ve been doing research in this field, and since you’ve been working with these families, the evidence base, is it getting stronger? How has the research and evidence evolved for this field?

Jane: I would say it has evolved in a number of different ways. Obviously we now have an abundance of evidence that ABA, that’s delivered intensively by qualified personnel now over a period of time, can produce really substantial benefits, all the way to normal cognitive functioning language skills, to greatly improved adaptive skills, for a good percentage of the kids.

Along with that has also come research that has been much more targeted towards addressing specific problems, whether it’s self- management, stereotypy, more complex and creative use of language.

We’re really continuing to expand, “How do you address these specific problems?”, as well as, “How do you scale up these interventions in such a way that you can deliver the treatment in ways that will make an impact on the large number of children and adolescents who need it?” That’s also cost-effective, given some of the economic realities that we’re all living with, but are, also, part and parcel of being able to provide treatment over such a long period of time, to see the effects?

Kevin: That’s an interesting point you brought up. How are you, in your own practice, and what the industry is doing – how are you addressing that need for scale and cost? What are some of the best practices that folks like you do?

Coleen: That is a significant question. We often talk about it. I think that’s the other piece that current research is continuing to show us. It’s not all about the hours; it’s about how they’re spent. We are committed to continuing to move that part of the science forward.

It’s much more common now to find 30 to 35 hour a week classroom programs. What we’re really wanting to do is say, “How does that time need to be spent?” What we have been able to drill down is we’re looking at between 1200 and 2000 learning opportunities [per day] that we need to set up, and they need to be quality learning opportunities.

Continuing to show that to people, talk to people about that, provide some data collection in different settings so that we can demonstrate how that happens, and how it’s not happening in some settings, and that may be why they’re not getting the same results.

We have a unique situation here, where I’m a speech pathologist and, basically, all of my colleagues are board-certified behavior analysts, some with PhDs in psychology. We’ve been able to take some of the developmental information we know, and then say, “What do we need to put into place to actually get these kids up to their typically developing peers?”

Everything from how are they attending to environmental sounds, maybe debunking some myths about some of the “sensory issues” these kids have.

Jane: On the other side of it, that’s focused on who’s actually delivering the treatment. Everybody is recognizing the importance of being able to try and identify, and then put into place really, “What are the specific skill sets and competencies of the direct line therapists, whose role is so crucial in producing the gains?”

Thankfully – the research shows us this – they don’t necessarily have to have a deep or steeped background in ABA, or developmental psychology, or speech and language pathology. But really, making sure that they do have the important information, skill sets, to be able to deliver the intervention effectively. That’s something we’re still working on, but everybody is turning their thoughts in that direction.

Kevin: Is it part of just having a wider array of therapeutic skills at your disposal, to be able to address all the different needs a child would have? Is that a big part of it?

Jane: And, I think, recognizing that at different points for each child, it may be somewhat different, but certainly at different points in the stages of the intervention, that really different skill sets may be required on the part of the direct line therapists.

The person, or the skill set, that is so crucial in the very beginning, may not be the same skill set that’s needed six months or 18 months down the road. Being able to operationalize that in some way, and formalize that in some way, is probably going to be helpful.

Kevin: Do you find yourself, as you’re talking to people new to this field, to families, to insurance companies or benefits managers, that you have to keep coming back to the evidence-based, science- based research part of this? Is that an ongoing battle you have to keep fighting, and fighting, and fighting, all the time?

Coleen: I’d say, for parents, it’s a bigger issue. Many of them have done the best they can. They hear this term; maybe they were the first ones to see the signs, and they’ve been looking for a diagnosis. Then they go to the Internet, and it’s just not a good place to go. In fact, we try to tell our parents, at least, lead them towards the websites that are going to give them good information. That’s difficult.

The insurance companies welcome that information. It’s a different issue on that end, if they’re looking at the science and saying, “Fine. This has to be an ABA program. Only a board- certified behavior analyst can provide it.”

What Dr. Howard was just saying is true. We know that we can teach paraprofessionals to provide good, evidence-based treatment. It’s really about the training systems that are put in place, and about matching up the skill level with the needs of the child.

Jane: This is going to be new for health plans to wrap their minds around as well, and their budgets. Because, obviously, ABA is no quick fix, and it is going to need to continue to rely on not-licensed personnel to be delivering the intervention. There’s really no need for it, and it’s an expense that would be totally unnecessary, anyway. It is a model of treatment that they’re not very familiar with.

Kevin: That’s fairly consistent in other parts of our health care system. You have paraprofessionals for other areas in health care. The brain surgeon doesn’t meet with every . . . we have nurses, and we have other people that are trained as part . . . why is this different? Or is it just that it’s not different but just new? Is that the difference?

Jane: Talk to me in a year and I’ll probably have a better understanding of how plans are thinking about things. The kind of thing that I hear is they are concerned about the longevity of the treatment, about who it is that’s actually spending the time, primarily, in the face-to-face.

Kevin: Is this a qualified person, or is this Uncle Joe that can’t get it right?

Coleen: Going back to the uniqueness, I do think it’s unique. I’ve been trying to come up with some parallels in terms of another field. Yes, there are nurse practitioners, although they have a license. I’m trying to think of another field where you really would have somebody without some sort of a credential or license. We’re forging new territory here. Although there’s good evidence to show outcome, in the medical community, it’s fairly unique.

Kevin: Now that you put it that way, that does makes sense. But it’s part of what you touched on earlier. If we’re going to scale these services to get the most out of our precious health care dollars, we’ve got to get creative.

Coleen: Absolutely.

Jane: Exactly right.

Kevin: Otherwise it’s going to cost everybody more, most importantly the parents, who can’t get these services for their children.

Coleen: It’s definitely an access issue. Number one, there’s no need, but number two, there are not enough board certified personnel to be sitting in the chair. Or speech pathologists, I’m the only speech pathologist in the agency. We’ve definitely been able to show that there’s nothing magical about sitting one-on-one across from me. It’s about the designs of the programs, and the training of the people providing it.

Jane: I was going to say, in fact, the 2005 study that we published showed that this particular approach to addressing language deficits, and really getting language on a catch-up trajectory, was much more effective than having separate, individualized or group weekly sessions with a speech and language pathologist.

We know this can work. It’s a question of how you can package it up in such a way that you get consistently high outcomes, as this treatment becomes more widely available?

Kevin: This has been incredibly helpful. What kind of challenges do you see on the insurance and coverage side with families, and in companies? What are the major issues you’re faced when it comes to reimbursements for these services?

Coleen: Currently, in California, we’re making great strides. However, the biggest challenge is this question of licensure. We’re doing as much education as possible, but that’s one of the big humps we’re looking at.

Jane: As you might know, there’s now going to be a bill before Governor Brown that would recognize board-certified behavior analysts as qualified autism providers. Hopefully that will have the right outcome, so that that goes into law.

The other issue, besides navigating the health plan gauntlet, is we are very concerned about how co-pays are going to come into this, for families, and whether or not the way in which co-pays are viewed, and calculated, ends up being a de facto denial of services for families.

Kevin: In practice, can you give an example of the worst possible outcome that could happen?

Jane: There is the prospect of families needing to provide a co-pay that could be something in the neighborhood of $20 to $30 a day, something like that. When you’re talking about these intensive sorts of services, then you end up with a family who might have a co-pay of $500, $600 a month.

Even though their health plan would provide this coverage, the financial reality of what that would really mean for the family may mean they’re not going to be able to access that particular benefit.

That’s one of the challenges. In California, that’s going to be something that we’re going to have to solve here.

Kevin: Just a layman’s question. Would that be a better solution than what we have now, or would it just be so expensive for most families that it doesn’t matter if it’s better, it’s not good enough?

Jane: One of the truly wonderful things about California has been the Regional Center system, which has been able to provide funding for ABA treatments for children and adolescents with autism.

Kevin: That’s educational-based, right?

Jane: No.

Kevin: Oh, it’s not. I thought it was Medicaid. I’m sorry, through the Medicaid system.

Jane: Actually, the whole Lanterman Act and Regional Center systems, is a very fantastic story in and off itself that you might want to look at some day.

Kevin: I’m sorry. I interrupted you and took us down a different path.

Jane: That’s all right.

Ultimately, the solution has to do with all of the stakeholders, all of the funding agencies that have been involved. Regional centers would be part of that, federal government, health plans. There needs to be some sort of reasonable solution that comes up.

Everybody’s got a stake in having these individuals become independent, functioning adults, and it’s going to require everybody getting together on that particular solution, but I think it’s one that the Regional Center system, here in California, may play a role in.

Coleen: The short answer, because we’re in a unique area of California, is our parents don’t pay anything out of pocket. When you talk about that $500 a month, that’s a big difference here. We’re certainly aware that in other parts of California, as well as the U.S., people are paying much more than that already. That’s the unique part about where we are right now.

Kevin: That’s a question of perspective. I’ve talked to a number of families where they literally cannot afford their house.

Coleen: Some insurance companies are saying, “Fine. A.m. and p.m., those are both separate visits, so you have a $40 co-pay; it’s really $80 a day.” It just depends on how they’re going to spin this.

Jane: That problem [inaudible 21:35] access for families.

Kevin: I learned a ton in talking to both of you. I’m very interested in this topic, obviously and about evidence-based medicine. I would be curious to hear how the research has evolved, but since we’re getting close to the end of our time, we’ll have to save it for another time we can talk about.

How can families find out about Therapeutic PATHWAYS, and what you do more? If they want to reach out to you, what’s the best way to get a hold of you?

Coleen: Probably, the best and easiest way is, certainly, if they’ve got a computer, to get onto our website, which is www.tpathways.org. We have a lot of information on there. You can contact us via email, or phone. There is nformation about the different services we provide. That’s the most common way people find us.

Kevin: Where do you guys currently operate in California?

Jane: We’re in northern California. We’re in the Central Valley, in Modesto, Tracy. We have, also, offices in Sacramento and Elk Grove.

I’d like to take this opportunity, Kevin, to extend an invitation to you to come out and visit us, maybe on your way to Yosemite or something like that.

Kevin: Awesome. Thank you so much. I would love to do that. After the interview, I’ll follow up with you to figure out how we can make that happen.

Thanks again so much, not just for taking the time to help inform people like me, and some of the families and people who are watching this, but also for your personal commitment.

You, obviously, are some extremely talented people who could have done anything you wanted with your careers. The fact that you chose to put in such a critical field, helping families. This is, unfortunately, such a critical issue to our society.

On behalf of our country, I want to thank you both for the commitment you’ve made to helping families.

Jane: Thank you, Kevin. We feel very fortunate to be able to do this work and we appreciate everything you’re doing to really be able to get the word out.

Kevin: Thank you very much for that. I enjoyed talking with both of you. Have a great day.

Jane: You, too. Thank you.

In this interview, Karen Driscoll, co-founder and volunteer for ACT Today! for Military Families tells her personal story and explains why Autism benefits are so important for military families.

The goal of the foundation is to improve awareness of the unique needs of military familes living with Autism and improve access to urgently needed treatments and support services.

As a military veteran and graduate of the US Coast Guard Academy, I have numerous friends with children on the spectrum.  I now understand why Autism benefits are particularly critical for military families.

I hope you will enjoy hearing Karen’s story and passion as much as I did. Please ask your representative to support HR 2288 and help military families.  I donate to ACT Today! for Military Families and encourage you to do the same.

Thank you, Karen.

Transcript

Kevin: Hi, I’m Kevin Dewalt, founder of Puzzle Ribbon. Today I’m going to interview Karen Driscoll, co-founder and volunteer for ACT Today! for Military Families. Karen is married to Colonel Jerome Driscoll, U.S. Marine Corps, and is the mother of three children, one of which is on the autism spectrum.

The goal of the foundation is to improve awareness of the unique needs of military families living with autism, and improve access to urgently needed treatments and support services.

On a personal note, I’m also a prior military member myself, and have a number of friends and family with children in the spectrum, so I’m especially excited to interview and meet our guest today.

Karen, thanks for joining us.

Karen: Thank you for having me, and thank you for helping raise awareness about the challenges our military families are growing through.

Kevin: The pleasure’s all mine, Karen. Tell me a little bit about your story. What made you go from being such an activist, and creating an organization, and doing all the wonderful things you do. All the people in the autism community speak so glowingly about you, and you’re so highly regarded. People just want to know about you and your story.

Karen: I think, like any parent, and especially the autism moms, we find ourselves in a situation where we’re having to advocate for positive improvements. In my case, my son was diagnosed with autism at age three. We were living in California at the time. My husband deployed to Iraq a year later. Dealing with the challenges of a deployed spouse, as well as the day-to-day challenges of autism, it really brought some thought process to me, at home, as to, “Wow. There are some deficits in terms of how to assist families with special needs.”

It really hit home when we left California, soon after my husband came home from Iraq, and we moved to northern Virginia, where he was assigned to the Pentagon. When we were in California, we had a comprehensive treatment program of close to 25 hours a week for my son.

Kevin: That was through the RFCs, or how did that work?

Karen: That’s a really good question. It was really compiled by various funding sources.

We had the school district providing roughly half of what my son needed. We had TRICARE, which is our military health care system, providing some limited coverage. Then we had the Regional Centers in California, which, roughly explained, is California’s version of the Medicaid waiver program. It was compiled of three funding sources.

When we left California, and moved to Virginia, I literally went from 25 hours a week of vital, urgently needed therapy for my son, to literally zero. That really highlighted, to me, some of the continuity of care needs of the mobile military family.

Nothing happened to my son’s autism, but when I crossed state lines, access to services really became a huge challenge to us. Especially when you look at having to re-apply for Medicaid waiver programs, having to re-navigate the complex maze of services, whether it be in the medical system or in the special education programs – it was really complex.

I have a master’s degree. I have an advanced education, and I would say I was pretty seasoned and well-experienced in the Marine Corps life, yet this was hard for me. So I began to reach out to other families going through the same things, and asking, “What is needed for our families, today?”

So I began to educate our senior Marine Corps leadership, and show them the continuity of care needs, and access to care issues, the mobile military family with disabilities may experience.

Kevin: I’m thinking back to my own process in the military. It’s funny, this never really occurred to me, but you’re dealing with a much tougher situation than civilian people would, with a child with special needs, because you’re being told, “You have to move today.”

You go where you’re ordered to move. You have a lot less control over that. Someone in the civilian sector, they find a therapist they work with, they go through this god awful process of getting it funded and if it’s not done, they at least reach some sort of steady-state equilibrium.

In your situation, you’re told, “Hey. Not only do you have to move, and have the stress of dealing with that move, and having three young children but, on top of that, you have to re-educate yourself, and do the whole process all over again.”

Karen: Also, given the economic climate at the time, most states had wait lists for Medicaid waiver assistance. So what’s happening, for our mobile military families, is that they’re going from bottom of wait list, to bottom of wait list, to bottom of wait list, never, effectively, receiving any assistance from the state.

I happened to be very lucky, at the time, to be in California where, legally, you cannot have a wait list. But, even since that time, California’s laws have changed significantly, so now I don’t even qualify for services from the state.

The continuity of care is broken, and treatment gaps in services, for our families, are experienced on a regular basis.

So I began working to educate our senior leadership about those challenges, and providing, I would say, positive recommendations on what we can do to address that, mostly focused on policy and, mostly, focused on autism, because that’s what I know.

But, I believe, that many of the issues impacting the family with autism are comparable to many other patient populations, access to care, access to specialists, Medicaid waiver programs and special education services. By highlighting autism, I was able to open our leadership’s eyes to what these families experience.

Having a disability is a natural part of our human existence. I get the question all the time. “If it’s so hard, why doesn’t your husband get out of the Marine Corps?” Well, frankly, because if he gets out, there’s somebody coming right behind him with the same issues.

When you talk about the military family, you have a very unique set of key issues you have to address. It’s military readiness, military retention, but also our moral obligation to the military family in providing the services and health care that they require.

My husband’s a helicopter pilot and, when he was in Iraq, his primary mission was casualty evacuation. He’d go into a combat zone, he’d pick up our injured, and carry them to safety and care. You don’t want that Marine worried about his $5000 therapy bill that month.

Kevin: Absolutely not.

Karen: You want that Marine focused on his mission. That’s what we talk about, family readiness, military readiness. It’s important for the war fighter overseas to be focused on what he’s doing. That really brings the importance of our military leadership to focus on our families here at home.

There’s also the retention aspect of a quality, all-volunteer force. My husband has 25 plus years experience, three master’s degrees, helicopter pilot, and combat commander in two wars. You can’t replace that Marine overnight.

Kevin: No, it takes 20 years.

Karen: It takes 25 years to replace that Marine. Again, having a disability is part of our natural existence. It’s a matter of embracing what these families need, providing them the services and support so that we can protect that readiness and retention, and meet that moral obligation. It’s more than just our typical civilian families.

Kevin: That’s a fantastic summary. There are definitely parallel issues between what companies face, and what the military faces: employee productivity, and retention, and the moral obligation we have to helping people.

But, clearly, just hearing you talk through these situations, and knowing what I’ve experienced, and what my friends and family have experienced, it’s magnified in the military, just with the nature of the stress of the job and the number of times you have to move.

Being a military family is hard enough as it is. There are so many sacrifices. When you put this on top of it, it must be nearly overwhelming for people.

Karen: Think about autism. Autism is unaffordable to 99.9% of our population. It’s simply unaffordable. Access to the appropriate care and treatments is vital for, not only for the well-being of the family, but for the future and success of the individual affected.

But when you talk about the military family, and providing those services for their children, it is essential for our country’s security, and our mission overseas. So I began to recommend some very positive improvements to our TRICARE policy, which covers limited amounts of applied behavior analysis.

Kevin: Through the ECHO program?

Karen: Through the ECHO program.

It’s not what it needs to be. ABA is long-established as an effective and mainstream treatment for autism, yet TRICARE segregates it out of the current TRICARE program into a separate arm of TRICARE requiring additional enrollment eligibility criteria, and it actually sets a limit on the amount of a child’s treatment program.

If we are unable to access state services, or having challenges through the school district, we’re limited on the TRICARE piece. What happens to that mobile family is, we’re never able to access the recommended standard of care.

I began to recommend TRICARE policy improvements. We’ve seen some baby steps, with the help of Congress. Again, it’s not where it needs to be. Recently, we introduced legislation advocating bringing applied behavior analysis, and other evidence-based behavioral help treatments, into the regular TRICARE basic program as a medical necessity, and providing for prescribed level of care.

That’s called the Caring for Military Kids with Autism Act.

Kevin: The Caring for Military Kids with Autism Act, HR 2288. If somebody just goes on the web and searches for “HR 2288″, can they find information about it?

Karen: Absolutely. It’s actually out there. It’s published by the Library of Congress.

With the help of Autism Speaks, we’ve been able to help reach more of a population out there. There’s a military web page on autismvotes.org as well, and I believe there is a copy of the legislation there as well. We’re asking families to call their congressmen and ask that they sign on as co-sponsors.

Kevin: I’m a fan of the military family, either I’m passionate about this because it’s the right thing to do, or I’m a friend of a child or a family member in the spectrum. When this legislation passes, and I’m going to speak in optimistic terms, what would be the change that families could expect? What’s the goal, and how will it impact families?

Karen: My question all along is, “Why are we segregating out medical treatment into a separate program, requiring additional enrollment and eligibility criteria?”

To bring ABA into the regular TRICARE basic program, it would eliminate current barriers in the system. I hope it will provide more timely access to care, as well as eliminate dollar caps on services.

Right now, TRICARE provides roughly $36,000 a year of ABA therapy which, under current billing rates, is about, roughly, on average, across the nation, maybe 11 hours a week. So, that’s less than half of what is medically recommended for a two year old newly diagnosed today. And so, it will provide for a prescribed level of care.

In addition, because of the eligibility criteria on the ECHO program, it will provide access to all TRICARE eligible dependents, meaning retirees; guard reserves, who are TRICARE eligible; will also have access to these vital services.

Kevin: If I had to summarize this, it’s expanding coverage to more members of the military family?

It’s expanding the coverage itself, in terms of what families actually need in terms of hours of ABA therapy, and it’s also just making it easier for people to get into the system, so they don’t have to work with somebody like Scott Campbell, who’s created a fantastic pamphlet of pages, and pages, and pages of information on what families can do.

I have to confess, if I’d be in a family in that situation, I would find the whole thing pretty overwhelming.

Karen: I don’t like to put it in a context of expanding current benefits. In my opinion, it’s bringing coverage of autism in parity with other chronic health care conditions.

Kevin: Great point. Excellent.

That’s the legislation. Can you tell me a little bit more about the foundation, and how you help military families? Some examples of success stories, or what you do for families?

Karen: As you talked about, autism is extremely expensive.

I would say the emotional and financial tolls autism brings are very personal to me. We’ve paid thousands and thousands of dollars out of pocket for my son’s treatments. My husband’s a colonel, and this is unaffordable to us.

Recognizing the importance of, I would say, community and non- government organization support, I reached out to an organization with like mission. ACT Today! Autism Care and Treatment Today is a new non-profit, launched about five years ago.

I reached out to Nancy Alspaugh-Jackson, their executive director, and I said, “Here’s the issues facing our military families. Would you be willing to launch a program dedicated to our military families, in honor of their service and sacrifice? But also recognizing America wants to help our military families, and here’s a very positive way we can do that.”

Nancy’s father’s a retired Marine. She said, “Absolutely, but we’re brand-new. Give me some time.” About two years later, she called me and she said, “We’re ready. We’re ready to launch this program.”

Kevin: Fantastic. Awesome.

Karen: It’s called ACT Today! for Military Families. It’s a program of ACT Today! but you can go to acttodayformilitaryfamilies.org, and families can apply for a family grant. We pay the providers directly.

With the application, they apply for a certain service, and give their provider name, and we work to negotiate a lower rate, and try to stretch the value of our non-profit dollars.

We’ve been in operation now for a little over a year, and we’ve helped over 50 families with direct assistance for ABA therapy; biomedical interventions; legal services; as well as social skills. We just provided one of our first grants for an assistance dog.

The mission of ACT Today! is, obviously, to build autism awareness and supports, but really, our focus is, how do we help lighten the load of our brave military families?

Kevin: That’s fantastic, Karen. Do you also help the families get through the ECHO program, and manage that as well, so they can get the services that TRICARE offers? Or do you come in after that point?

Karen: I do some parent-to-parent outreach, but that’s not in a volunteer capacity for ACT Today. I do help one-to-one, parent- to-parent, and put them in contact with the appropriate personnel at the contractor level, whether it be TRICARE managed by three contractors nationwide, so I help them get in touch with the ECHO program case management system.

It’s not an easy process. There is some improvement, nationwide, through our military’s Exceptional Family Member Program, EFMP, where each branch of service has a family program dedicated to assist families in need like that. It’s helping them find those resources in their community, and local area, as well.

Kevin: Well, Karen, you’ve sold me. I’m going to donate.

Karen: Our mission is to assist military families and again, as I like to say, help lighten the load. It’s not a fix, but it does provide relief to families, and improves the overall quality of life.

We have two big events coming up, if you find yourself in California. Next week we have a golf tournament for ACT Today.

Kevin: I’d love to be in that. Unfortunately, I’ll be on the East Coast. Otherwise, I would be there.

Karen: That’s September 12th, so if you’re interested in golfing in California, go to act-today.org, and learn more about our golf tournament.

In April, being Autism Awareness Month, and also the Month of the Military Child, is our biggest event to highlight our military family program. We have a 5K, 10K event in San Diego, a walk-run, as well as a Family Resource Festival. It’s fun for all ages, and it’s really a good time.

Last year was our first event, ever, and we had over 1200 attendees, 100 volunteers, from all over San Diego, coming to assist. It was really inspiring to watch the San Diego community come out and support our kids.

Kevin: That’s fantastic. I always look for any excuse to come back to California, so I will definitely try to be there in April.

I have to say, Karen, before this conversation I did not fully appreciate how much more challenging these issues are for military families. I’m definitely donating. If other folks like myself want to donate to ACT Today! for Military Families, do we go to the ACT Today! for Autism website? Are there links there?

Karen: At ActTodayForMilitaryFamilies.org, there’s a “Donate Now”. If you have a corporate organization, we’re looking for sponsorships, ongoing support from community organizations for our events.

There are many ways America can help rally behind this program. Search our website. Learn more about the need. We need America’s help to continue this mission, so thank you.

Kevin: You’re welcome. You absolutely have mine.

For those watching this, I’ll be happy to include all these links in the show notes, so that you can go directly and donate.

Karen, thank you so much for your service. Thank you for your family’s service. Thank you for your passion and support of military families in this campaign.

It’s been fantastic getting to know you, and I look forward to seeing HR 2288 get passed, and hearing more about your future successes.

Karen: Thank you, Kevin.

Kevin: Enjoyed talking to you, Karen.

Lani Fritts is managing director of Trumpet Behavioral Health.   Trumpet provides assessment, consultation, and behavioral therapy to individuals of all ages with developmental challenges including Autism and other related disorders.

In this interview he explains how Behavioral Analysis is evolving from fragmented boutique clinical practices to expansive services that provide a wide range of standardized therapies supported by best practices in training and technology.

Scroll down for transcript.

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 Lani Fritts, Managing Director of Trumpet Behavioral Health.

Trumpet Behavioral Health provides assessment, consultation, and behavioral therapy to individuals of all ages with developmental challenges, including autism and other related disorders. Lani became Managing Director after his distinguished career in corporate America. He is a graduate from Georgetown University and obtained his MBA from my Alma Mater, Stanford University. So Lani, thank you for joining me today.

Lani: Thanks for having me.

Kevin: So Lani, tell me your story. How did you go from working in corporate America and having your MBA to running a behavioral analysis organization?

Lani: Well, it’s a relatively short story, but several years ago I met a good friend, who now is my partner, Chris Miller, and we both were working in related fields. I was more in the technology world, and Chris was in health care services. We both had an opportunity to transition our careers and think about something to do with the rest of our lives. We had a whiteboard in front of us, and we were really looking for something more meaningful to do.

I worked for a company that eventually was sold to a large government services organization, a hundred plus thousand people, so there were two things. One is I wanted to be in an industry where I could really get excited about what I was doing from a human perspective every day.

Kevin: I can relate to that.

Lani: Two is I wanted to do something that was a little bit smaller, a little bit more entrepreneurial. Chris happens to have married a woman who has worked with children with autism for many years. She is a behavior analyst. We started to research the epidemic of autism specifically and started to talk to people in the field and found a great opportunity to help to build an organization that can provide these services at a much larger scale to try to address the increasing need.

Kevin: As you were talking to these families and I’m sure to other behavioral analysis companies, what were some of the challenges you saw that were happening in this space that was keeping more families from being able to access these types of services?

Lani: I think that a big part of it is funding and determining how the funding environment is changing and the landscape is changing. The second is any kind of access to baseline best practices and common standards for providers, especially when you get out of major metropolitan areas, but even within metropolitan areas having a mechanism to really understand what best practice is.

Oftentimes families, of course, when they get the diagnosis, they have to become experts in the field right away and have to determine what is best practice and what’s not. I think those two areas, funding and then having to make those clinical decisions or educate themselves, have really been a challenge.

I think the opportunity for us is to really raise the bar from the practice area perspective and using evidence-based programs and really developing the field as well as continuing to extend the reach of our services through physical presence and even technology presence into areas that haven’t previously had access to high quality services.

Kevin: So when you mean best practices, is it the case of I’m a family, I just received a diagnosis from a pediatrician. Now I don’t know what to do. I’m being bombarded by all kinds of options, all kinds of information, and I don’t know how to make sense of it. Is that what you mean by best practices?

Lani: That’s right. Families have to immediately get up the learning curve on all of the evolving research. Of course, there are lots of different theories about cause and lots of different theories about effective treatments, especially for autism, and so they have to immediately become their own medical home in determining what’s the right approach for their particular diagnosis.

There are a lot of competing views in the world today on some of these topics. So I think, from my perspective, it’s raising the awareness of the research as to what is effective and then providing access to the most appropriate client-focused, individual-focused treatment plan that will address the specific goals and objectives that that individual has. They’re not trying to cookie cutter apply theory more broadly to an individual.

Kevin: Great. Tell me a little bit more about Trumpet’s business. You saw all these challenges that you saw in the marketplace, the needs the families have. What are you guys doing that is different to address those and help families get access to these services?

Lani: We focus fundamentally on hiring, training, and retaining the best people in the field. When we think about the way that our approach to the individual, we take a very client-centered view focusing first and foremost on the specific functional assessment and behaviors or needs of the individual based on where they are in their development in life.

We take a very collaborative approach. We have a larger team than most behavioral services companies in the country, and so we have very unique skill sets that we can apply through operating as a team and we use technology. So we are continuing to train our people using technology and track programs and cases using technology so that we can really look at the data on a consistent and efficient basis.

Kevin: Okay. So it seems like you kind of covered three main areas. One is just recruiting, which from what I understand is a tremendous challenge in this space with the demands outstripping supply, and just finding qualified behavioral analysts is tough. The second is I think the scope of services. Is that a good way to put it?

Lani: Sure.

Kevin: That every child is different. You need a broad array of skill sets to be able to address a child’s needs. This is always an area that’s of interest to a lot of families. I’ve lost track of the number of iPod apps that keep coming out for families. So when you say technology, what do you mean by that?

Lani: Our use of technology, there’s an internal and an external component of using technology. Some of it is finding ways to more efficiently train our team members in best practice and latest research areas and test competency in a way that when our families are working with any individual across our several hundred team members, they know that that person really does have a foundation and a basis with which to operate.

Historically, training for therapists has been really dependent on the individual and who was delivering the training. So there is a high variability of skill of those therapists. So part of that is providing our ability to hire great people and then train them to be even better in a systematic way. So that’s one way we use technology.

Kevin: That’s more internally facing tools to make you more efficient at helping families.

Lani: That’s right. The more external facing view is in our programs, when we design goals and objectives and we begin to take data on the accomplishment of those goals or behaviors, being able to systematically look at that data and then provide feedback back to the families or back to the school districts or other case management teams that can really hone down on what’s working, what’s not working. Then as we move forward, going forward our expectation is to be able to look at the metadata across all of our programs and the kids that we’re serving every day so that from a research perspective we can really dig into the efficacy of a particular intervention against whatever demographic we may be thinking about.

You can imagine in an organization our size, where we’re serving north of a thousand clients and students every day, if a researcher wants to look at the efficacy of a specific treatment across a demographic or diagnostic area, we probably have 20 or 30 individuals that would fit that profile on any given day that we’re working with. We would have the ability to look at that data systematically. That’s another way that we’re using technology.

Kevin: Just to make sure I don’t miss anything, you serve up to 1,000 different clients per day at Trumpet?

Lani: That’s right.

Kevin: That’s a sizable amount of people. You’re reaching a measurable fraction of the American public that’s been diagnosed on the spectrum.

Lani: Well, it’s an interesting thing when we think about the vision of where we want to go. While a thousand people every day sounds like a big number, there are one and a half million individuals in the United States today alone with an autism spectrum diagnosis. It’s measurable, but it’s a tiny percentage. While it does sound like a lot, it really is a small piece of it.

I think that’s been one of the challenges as the epidemic of autism has grown, generally, there haven’t been providers that can provide services at a larger scale across broader populations. Our vision is we want to have a meaningful impact on the issue, and to have a meaningful impact on the issue, we need to be even larger than we are now or at least have a mechanism to demonstrate what’s working, again, through research opportunities in a way that could scale to other providers and we could provide that research to them even if we’re not providing direct services.

I think that while we are a large organization, there’s a big opportunity to provide a lot more and do a lot more across a broader population.

Kevin: I guess just from my perspective, just the limited time I’ve been working with families and providers, I’m used to see small, two to three person, a lot of in-home or small office operations, and I’m not used to hearing people talking about something that’s an organization like yours.

Now that I have that background, it definitely makes it more clear why the software and the technology and the training are such an important part of being able to scale this to be able to help more people and to be able to do it more effectively. I think I cut you off before you focused on the technology side for the care related side of things. Can you tell me a little more about that?

Lani: Yeah. There are really those different components. There’s the training of our people component. There’s the case management component, and then there are the specific resources used in any individual case or individual session. So when we think about activities or interventions or specific learning tools, we will adopt technology, whether it’s an iPad app as you mentioned before or even just keeping a library of specific types of activities or interventions that are appropriate for an individual goal.

We’re constantly building this database of specific activities that can be used for any individual as we’re running a program or as we’re developing a program. Those are the ways that we continue to evolve the content that’s available to our teams, and then we provide that content also to other program teams.

If we’re working in schools, we are providing that full technology platform out to the school district staff, the one-to- one aides or the behaviorists or even teachers or one school district even used our platform to do basic training for administrative team members like bus drivers or cafeteria workers so that they have a better understanding of how to relate to an individual that may think about the world a little bit differently than a typical kid might look at it. It’s a way technologies continue to expand understanding.

Kevin: That is really interesting. I know that there’ are some folks where I live, in Virginia, who do training with First Responders and firefighters and police for a lot of the same issues. It’s not something I would’ve thought of, but of course bus drivers and other people in the education system need that same kind of training as well.

Lani: Yeah, exactly. Exactly.

Kevin: Thank you. This is obviously a passion for you. I can just tell in hearing how excited you are talking about it, and the fact that you’re trying to impact the entire ecosystem of our country that works with these children and not just deal with analyzing the behavior in one particular session. What are the biggest challenges you see going forward in terms of the space and the people like you trying to help families? What are some of the major roadblocks that you’re going to see running into the next couple of years?

Lani: Well, I think certainly funding is one. I live in California, and I think California is the poster child for challenging state budget situations. I think that finding other avenues and resources for families to be able to access, to be able to get services that they need, I think is a big piece, and of course that’s where insurance reform and some of the legislative initiatives as well as at the federal level, the research opportunities are really important for people to get behind and support because of course there are trade-offs and priorities that have to be made at the state and federal level from a budget perspective.

I think that finding ways to be more efficient with the dollars that are available is a big piece of it. I think that when we use a resource we have to make sure that we’re getting the maximum impact and effect out of it. I think that the more educated our families are in helping to support and reinforce the programs that we’re developing, I think that leverages those dollars a little bit more because there are many more instructional opportunities with parents than there are for we’re working with a client for an hour or two a day.

I think having a holistic view to the treatment plans, including parents, including other disciplines like speech, language, and occupational therapy programs as well as the educational curriculum, the more we can integrate those programs the more we can get out of those dollars. It really is the dollars. Then in some of the rural areas, access to services at all, which is getting better and better over time.

Kevin: It’s going to be an ongoing challenge.

Lani: Exactly.

Kevin: On the funding side, can you tell me some of the challenges you’re running into with insurance and getting these treatments paid for by either yourself when you file claims or by the families themselves? What are some of the major issues you’re running into there?

Lani: I think that the challenges are our world is really transforming from the behavioral services side to more of a medical model. So dealing with ICD codes and the CPT codes and the co-pays and billing and coding and those kinds of things are new things for the behavioral world generally. So I think that’s one challenge, just learning how to speak their language.

The other, of course, is the model. When the insurance providers are trying to understand how to provide support or benefit to their beneficiaries, oftentimes they’re looking at it from a licensed provider perspective versus a supervision perspective, and in some cases there is not a mechanism in many states to license board certified behavioral analysts. So this becomes more of an administrative roadblock than it needs to be I think.

Kevin: Yeah. We have that issue in Virginia.

Lani: These are some of the challenges. I think we’re in this transitional phase where even if some of the providers, the managed care plans want to provide support, they’re not geared or organized internally to understand how to support it and how to process a claim and how to approve it.

Oftentimes, our industry is not geared towards understanding even the right way to collect information and submit it in a way that it can be processed. So I think working through some of those operational processes is going to be a challenge. At the state level, there are differences in the law with what the benefits provide. So I think those things are evolving and working themselves out.

I think when we got involved with Trumpet about two and a half years ago now, there were 7 states that had passed meaningful regulatory reform for insurance support for autism, and now I think we’re up to 27. So it’s changed dramatically just in those two years, and I think that’s going to get better and better. But those are still some roadblocks.

Kevin: Do you run into a lot of families who approach you and say, “Hey I would like to be able to avail my children of these services or I know I desperately need this, but I don’t know if my insurance company will pay for it”? Do you run into that a lot? Do you have means to try to help them?

Lani: We do, yes, and we’ve built a team internally that comes out of the managed care world to check explanation of benefits and to determine eligibility for families. If families are determined to be eligible, then we help them to navigate their process to make sure that that actually turns into real support.

Then the flip side is if they don’t have it, in their insurance policy or their plan, then we have ways to introduce them to individuals that can help to manage that from an advocacy process as well. We don’t do a lot of direct advocacy, but we will help them to navigate the process to the extent that it’s just understanding how the process works.

Kevin: Okay, great. Well, thank you very much, Lani. This has been tremendously helpful. If families want to reach you and they want to learn more about Trumpet and they want to maybe learn more about using one of your services, how should they go about reaching you? What areas do you operate in? What kind of guidance would you give to somebody who might be watching?

Lani: Sure. We operate in five states today, in Hawaii, California, Ohio, Arizona, and Colorado. We have contracts with many of the managed care companies in those states as well as school districts. So if a family lives in those areas, they can directly access our services, and they should go to our website, which is www.tbh.com.

Kevin: Okay. I’ll put that in show notes.

Lani: That would be great. They can click on our locations tab on the website and find an office that’s near them, and that would be the best way for them to start with us.

Kevin: Great. Well, Lani, thank you very much for your time today, and then thank you for everything you’re doing. Families and activists speak extremely highly of you and your organization. I appreciate your passion and your commitment to the community.

Lani: Thank you.

Join or Start a Campaign for Autism Benefits – Easy. Anonymous.

We now have active campaigns with families from Southwest Airlines(22), Boeing(18), Bank of America(2), University of Texas(1), Ford Motor Company(1).

Southwest Airlines

As a result of the passionate outreach efforts by families, friends, and providers, Southwest has become our most active campaign. We especially thank employee Eric Jones for this fantastic interview on why these benefits are so important.

Eric has been in dialog with the benefits managers at Southwest. They have been responsive to his inquiries and promised to investigate an Autism benefit in the coming year.

Next week we will be having our first kickoff conference call with Southwest campaign members. Lorri Unumb of Autism Speaks has tentatively accepted our invitation to join the call. If you are interested in being on the call, please join the Southwest campaign.

Boeing

The Boeing campaign is also active with 3 new families joining this past week. We have been developing a list of Autism resources near Boeing facilities at Wichita, Philadelphia, Huntsville, St. Louis, LA, and Puget Sound. We’ll publish these locations to help families reach other Boeing families and encourage them to join.

When 20 people join the campaign we’ll schedule our kickoff call.

Other campaigns

Our remaining campaigns are just getting started. Our biggest challenge – as always – is finding enough families to join so that we have sufficient numbers to begin reaching out to the benefits managers.

Remember that employees at companies like Microsoft used a sustained, constructive dialog with management to get their generous Autism benefits.

It worked for them, it can work for you. If you care about getting Autism benefits for American families, please reach out to your friends, service providers (ABA, etc.), and educators and ask them to start or join a campaign.

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.

People new to the Autism community quickly learn that ABA is critical for people diagnosed with Autism. Did you ever wonder what “Behavioral Analysis” is? How long it has been around? Why it is “evidenced-based?” What Behavioral Analysts do?

Dr. Gina Green is one of the most respected authorities in the world on this topic.  In this interview she tells us her personal story and answers these and other questions.

If you care about getting America’s children these critical therapies, please consider Joining or Starting a Campaign for Autism Benefits or subscribing to our newsletter.

Transcript

Kevin: Hi everyone. My name’s Kevin Dewalt, founder of Puzzle Ribbon. We help families begin a constructive dialog with their employers about getting autism benefits. Today I’m going to interview Dr. Gina Green, Executive Director of the Association of Professional Behavior Analysts. Dr. Green received a Ph.D. in Psychology from Utah State University in 1986. Beyond that, she more accolades and credentials in the space of behavioral analysis than I could possibly list in this time, so I’m going to link to her bio from the show notes. On a personal note, I just want to add that she’s been incredibly helpful as an advisor to me as I’ve gotten Puzzle Ribbon going. It’s a great pleasure that I welcome you to the interview. Welcome, Gina.

Dr. Green: Thanks, Kevin, great to be here.

Kevin: To sort of kick things off, for someone who’s never heard of it before, or might be new to this, maybe a family who’s recently had a child diagnosed in the spectrum, could you tell us what is behavior analysis?

Gina: I’ll see if I can give the 50-cent version. It’s complex, but, essentially, behavior analysis is a natural science approach to behavior, to understanding how behavior works in nature, and then to developing techniques for changing behavior. The field, like many sciences, has a theoretical branch, a basic branch, people do basic research, and then an applied branch.

There are many applications of behavior analysis. From the basic research on how behavior changes and develops, how learning takes place, have come certain principles. Those are like natural laws, like gravity. Reinforcement is a principle. If behavior is followed by certain consequences, it’s going to tend to occur again.

Kevin: All right. In the case of autism specifically, can you give me an example of a behavior that you’re analyzing?

Gina: Behavior analysts would use principles like positive reinforcement and many others, and a lot of techniques that have been developed from research, to change any number of, what we refer to as, socially important or socially significant behaviors. For a youngster with autism, to take many worries we might work, let’s say you have a kiddo who isn’t talking. He isn’t even making any recognizable speech sounds. What a behavior analyst would do, of course, is first break that down, that very complex set of behaviors that is talking, break it down into components, into its little pieces.

With children with autism we’ve learned from lots of research that it’s necessary to often go to really small components and set up situations. We’re going to try to give the child opportunities to engage in that behavior, to have it repeated, so we can follow it with a positive reinforcer, so that we get that behavior to occur more.

If the child’s not vocalizing or not speaking, we might start by just maybe finding activities, tickling, music, something they do where we notice that they’re likely to make sounds. Then we’re going to look for those sounds. Maybe we’ve found that this is a youngster who likes a particular kind of juice or has a favorite little goodie or a favorite toy. When we hear a sound, or they vocalize, we’re going to immediately give them that favorite thing as a consequence.

Kevin: I see.

Gina: If what we see is that now they’re vocalizing more and more, we’ve got a positive reinforcer. We’ve got a method now to start building that vocalizing into speech sounds and then eventually we’re going to go to syllables, and then words, and then phrases. It can be a million baby steps to develop a repertoire like speaking.

Kevin: Great. I think that gives me a sense of the basics of what it’s about. For you personally, you could have done a million things with your life. What inspired you to get so involved with behavior analysis?

Gina: It really goes back to my being very lucky, that in my very small town where I grew up in Michigan, 100 years ago, they actually had psychology taught in my high school. It was very unusual then. I had this great, interesting teacher and I got interested in behavior because of that, so much so that I decided to major in psychology at college, at Michigan State.

A couple of things happened there. One, in an introductory psychology class, in which you get your typical overview of psychology, we saw this film by Ivar Lovaas called something like Operant Conditioning Language in Autistic Children. I knew nothing really about that, but it was just fascinating. Here this showed Ivar Lovaas working with these kids with very little in the way of any language and using some of the methods I was just trying to describe to get that increased. That kind of hooked me.

Then I had a good friend who was a graduate student there and a friend of mine when I was in college, and I had this class where we had some opportunity to work with children with autism who were brought to this clinic at Michigan State. This was the late ’60s, early ’70s. Nobody knew very much at all what to do with kids with autism. I certainly didn’t.

I realized that what we had been taught was play therapy, where you brought a kid into a room, you had a bunch of toys, and then you were supposed to reflect back to them what they were doing, what they were saying, if they said anything.

I remember in a room with a child with autism with my classmates and my professors watching, with this little girl who was spinning around, walking on her toes, flapping her hands and screeching. The therapy I had been taught would have had me going, “Oh, I see that you’re flapping your hands.” I didn’t know what else there was, but I knew that . . .

Kevin: You knew that wasn’t it.

Gina: That approach I didn’t think had a snowball’s chance of helping this child. I became, over a period of time, and going on in a Master’s degree program, more and more interested in behavior methods because they worked. They were systematic. They were empirical. You could actually see what was happening. You could measure to see if change was occurring. It was much more sensible to me, I guess.

Kevin: On that measurement note, when people say that it’s scientifically proven and that there’s evidence for its effectiveness, what does that mean exactly? A skeptic, or a cynic probably more likely, would say, “Well, this just sounds like you’re playing with kids.” How do you measure the effectiveness and why is it scientifically noted?

Gina: Number one, it’s much more complex than just playing. One of things we know about kids with autism is that they don’t really know how to play until we teach them that.

Kevin: To be clear, if anybody watches, I was not implying that it’s playing, so please don’t send me any hate mail.

Gina: I know you weren’t. That’s a part of it, is the complexity. The reason we can say that it is science, I think there are two main pieces. One is that I mentioned the process is, in itself, a science. It’s a discipline. It’s not as old as other disciplines go. It’s really been around since arguably the late 1930s. The first applications of behavioral analysis with children with autism were early 1960s.

Kevin: Really? It goes back that far? I didn’t realize that.

Gina: In the ensuing 50 to 60 years, what has happened is, we had this basic research being done about how it is that behavior changes and develops. We had lots of people taking that basic science and these scientific principles, like reinforcement, and saying, “How could we apply this to improve skills and reduce problem behaviors in lots of different kinds of people, including children with autism?” We’ve had this body of research literature in behavioral analysis that’s being . . .

Kevin: For decades now.

Gina: It’s developed for decades. What you see, if you were to go into a program that now does comprehensive ABA treatment . . . what a lot of people are familiar with is the work with very young kids, where it’s very intensive, lots of hours a week. It’s very comprehensive. You’re addressing all kinds of skills. Those programs now are based on this foundation of 40 to 50 years worth of research, where there are many techniques that behavior analysts use today. Each of them, or most of them, have each been tested separately. People have gone out and said, “Well, if we used positive reinforcement in this way, would that improve or increase some aspect of, let’s say, self-care skills?”

Kevin: Is it as specific as, will it keep a child from doing an activity that the parent’s don’t want them to do, like biting or scratching?

Gina: Yes. Actually, a lot of the work that behavior analysts have done involves techniques for reducing behaviors that put people at risk of injury, or simply of bad health, or simply of not developing their whole potential. We’ve got a big set of techniques that have been tested, and published studies show this, that are effective for increasing skills, communications, self-care, personal safety, just about any, you could imagine, skills you need to get along in a lot of different environments day to day.

Then we also have techniques for reducing some of the behaviors that occur in autism and other developmental disabilities, wandering or elopement, pica which is eating things that are not edible, unfortunate self-injurious behavior, aggression, and disruptive behaviors. Now we have this big package of a lot of different techniques that have each been tested out in various ways and shown to change those behaviors.

Kevin: If I’m a parent that has a child recently diagnosed and I start working with a behavior analyst, how does the process start? Do they start with a set of goals for the child? Do they measure and track those against goals? How does it work?

Gina: Well, it does, and should, begin with assessment. If someone were to come to me and said, “I want you to set up a program for this youngster,” we would look first at whatever information there is already available. Most kids have been evaluated by pediatricians, psychologists, speech-language pathologists, typically using standardized tests of their cognitive skills or communication skills, their daily living skills. Those tests give you a ballpark picture, an overview, of how the child functions in certain areas compared to typical children of the same age. Those tests don’t give us enough specific information to know where to begin intervention.

A behavior analyst would look at these big, global, overall assessments, talk with parents, observe the child to get some sense of what they do, and then set up specific situations where we’re going to try to get that child to communicate. We’re going to try to get him to make eye contact. We’re going to give him an opportunity to play with age-appropriate toys, to interact with adults, with kids. We’re going to be observing and recording data on what they do. What do they do in a situation? We ask them to wash their hands. We give them an opportunity to imitate. We’re directly observing that individual child or young person to see how they actually function, what they actually do in typical environments.

We use that. We call it ‘baseline,’ to measure how much those things are occurring now. Then we’ll work with family, and perhaps other service providers, to then develop goals and objectives for treatment.

Kevin: It sounds like, relative perhaps to some other areas in health care, that it’s probably easier to measure results, because behavior’s a lot easier to measure than potentially a drug or some other interaction.

Gina: Well, I hadn’t thought about it as being necessarily easier. Although, it is the case that it’s easier, in a sense, than if you were looking at drug effects, for example. Many drugs, of course, are designed to affect behavior or they do have effects on behavior. We can certainly measure that. If you’re talking about measuring physiological effects, then you need specialized techniques and supply.

It’s easier in the sense that, yes, behavior is out there. We work behaviors that are publicly observable. We can see and hear. There is skill involved in defining a behavior clearly enough that we can decide what we’re going to count.

Let’s say we’re concerned about a child being aggressive. If I told you, “I want you to watch this child and record aggression,” and that’s all I told you, you might count a lot of different things as aggression. We need to get more specific, and say “No. If he walks up to somebody and taps them a little bit, we’re not going to count that as an instance of aggression.” We’re going to define it as something involving more force and so on and so forth.

Kevin: You try to constrain the subjectivity of the evaluator basically.

Gina: Exactly. It’s important to define the behaviors observably, clearly, objectively. Preferably, what we’re going to do, at least periodically, is we’re not just going to have one person observing and counting how many times a behavior occurs or how well it occurs. We’re going to have a second person also independently doing that so we have some objectivity. We call it inter-observer agreement. It’s just one way to try to make sure that we’re not just relying on subjective impressions of one person.

Kevin: I see.

Gina: Making it so that it can be measured, so that you and I can both look at an instance and say, “Yeah, that was aggression,” or, “No, that wasn’t.”

Kevin: Got it.

Gina: Then we’re in a good position to see if intervention, how much a behavior like that is occurring before intervention. Then we can put in some procedures to try to alter that behavior, and we can keep measuring. We can see if the intervention makes a difference.

Kevin: On that note then, if I’m somebody who’d be paying for these services, either a company, insurance company, or family, depending on the situation, what kind of things should I be looking for to figure out whether or not it’s working?

Gina: Well, first of all, you have to have a qualified behavior analyst who’s overseeing the treatment. That should involve, again, doing this kind of a careful assessment of a person’s current functioning, working with a team of family and others to identify the goals of objectives for treatment, and then working out procedures for changing them.

What I just described a minute ago, baseline, so we measure each and every skill we’re going to probably be working on, each and every problem behavior. We’d want to at least get samples of those, so we can say how much they’re occurring now. That’s the baseline before treatment.

Then we put in our intervention procedures and we keep measuring in the same way. We plot those data on graphs. Usually they’re simple line graphs. You can see how much the behavior was occurring at baseline, dots on the graph. Put a line in that shows here’s where we started a specific intervention to try to change that behavior, continue to graph the data, and you have a pretty clear picture about whether the behavior is changing in comparison to baseline.

Kevin: I see.

Gina: It’s very much, absolutely focused on individual, very much, by definition. Improvements in each and every skill or problem behavior compared to the baseline. Then there’s another piece of that which is how much improvement we are going to be happy with. That’s another complex question, but we look at what’s going to be clinically important, functionally important. An improvement that enables the person to be a little more independent, function a little bit better or a lot better, to more readily get the things that they want and need from their environment, that’s it.

We also will use some of those standardized tests I referred to before, particularly when we’re working with young kids with autism and we’re doing this very intensive, comprehensive treatment. We want to see whether we’re changing what we call the developmental trajectory, if we’re accelerating that child’s development. They’re starting out being quite a bit below children of the same age who are typically developing, in everything, in their communication skills, their cognitive skills, their social skills, their self-care.

We can use a standardized test given maybe every year, because the standardized tests, most of them, if they’re called ‘norm referenced,’ they show you how somebody is doing compared to norms for their same age.

Kevin: On this evaluation side, maybe digging a little bit deeper, are there situations where a parent will start therapy, it doesn’t work, and they decide not to continue? Does that happen?

Gina: Certainly people decide not to continue for a lot of reasons.

Kevin: Right. Yeah. Do they often decide because, hey, we were going to try to hit these goals, but we’re not hitting them? We can try XYZ, but reality is, we’re just not making a difference with this type of treatment.

Gina: People often have to make those decisions, of course. They’re, again, not easy to make and have to be made with the big picture in mind. For instance, one of the things that’s important about behavior analysis and where you would ask, “What should somebody expect? How would they know?” what a good behavior analyst should do, looking at that data I was just referring to, if we don’t see the improvement, change going in the right direction and happening as rapidly as we might like, then a good behavior analyst should say, “We need to change our procedures.”

Let’s say we were working on trying to get that child to vocalize more and it wasn’t really happening. We’d then say, “Well, wait a minute. Maybe we don’t have the right motivation. Maybe we need a different reinforcer. Maybe we need to do some other activities, something with a context that might get more vocalization happening.”

Kevin: I see.

Gina: There are always these adjustments going on. It’s a very dynamic intervention, in that regard. The other thing that we always have to keep in mind is that most behaviors don’t change quickly.

Kevin: Right.

Gina: That’s where it can be very difficult for practitioners and for families. If they don’t see a big improvement in a few weeks or even a few months, they may be inclined to say, “Well, this isn’t working.” That often, frankly, can be a mistake. If you think about kids with autism, all the things we tend to be working on with them, I try to liken it to if somebody were trying to teach me a lot of new skills or just a complex set of new skills like computer programming.

Kevin: I’ve been trying to hit a golf ball for 10 years. I still don’t have it.

Gina: Golf is another good example. It’s the same kind of thing. We would need people to break it down for us, present it in a way that we could maybe grasp and have some success and small steps. We can practice it over and over. We’d have to be getting specific feedback. We might acquire one little piece of the skill. Then we’re going to get another piece of it. Then it’s putting all those component skills together.

Kevin: Now as I’m hearing you talk through this, Gina, I think I understand it. I can relate to it a lot more now. Thinking of the skills that I try to learn on my own, it takes time, right? You have to do repetition.

Gina: Absolutely. If you imagine a little kiddo who really doesn’t have any idea how to interact with people… You think about all that’s involved in social interaction. Think about talking, communicating, all the skills involved. Again, if we were in that position, we were trying to learn all that stuff, it would take a lot of time and a lot of practice. It would be probably go fairly slowly, at least at points. Then we’re going to hit phases where we think of it as the light bulb comes on. Things click and now we make some fairly fast progress and then we kind of level off. It’s the same with these kids, but we’re asking them to learn a lot. I don’t know if you’ve had the experience of trying to change maybe an undesirable habit.

Kevin: Yeah. Plenty. My wife’s been trying to change a lot of mine for a while, actually.

Gina: All of us have, whether it’s the way we eat or don’t eat, exercise or don’t exercise, smoking, what have you. Think about those problem behaviors. We’ve probably mostly been doing for a long time. Even with really good intervention, they’re not going to change overnight in most cases. It’s going to take a long time to unlearn those. That’s the same thing with some of the problem behaviors that we work with in people with autism. They’ve been engaging in those for a long time. It can take a lot of very, very consistent intervention to turn those around.

Kevin: Well, Gina, this has been incredibly helpful for me. I think our listeners will appreciate it too. I really appreciate the way you’ve laid this out in a digestible manner that is easy for me to understand without a lot of other jargon, which tends to happen when we get specialized. I do appreciate that.

I guess a couple of more macro questions about the field. One is, with all these legislative changes that are happening, with the laws being passed in different states, how is that going to change the landscape for the field and how the field interacts with parents? What do you see coming down the pike as states pass these laws?

Gina: That’s a really good question. Some things we’ve already seen include that, for example, when a state adopts a law that requires private health insurance to pay for applied behavior analysis services.

Let’s say it’s a state that maybe currently only has a few behavior analysts, maybe only has one university or even no universities that are training people. When these laws are adopted, what we’ve seen in some states is that people start to pay attention, and say, “Oh, here’s this intervention that’s proved to work, to be effective for people with autism and some other populations as well.” Now you have people who have a vested interest in that state building its capacity to provide those services. You get universities that say, “Whoa. There’s health insurance payment for these people called behavior analysts. We ought to be training people for that.”

Kevin: Interesting.

Gina: “How do we start a behavior analysis program?”

Kevin: The whole ecosystem has to adapt to be able to meet this need.

Gina: Yep.

Kevin: Is there a shortage now of behavior analysts?

Gina: Yes, there’s a very big shortage. We’re pretty small in comparison to many other disciplines and professions. Growing and growing pretty quickly, mainly because of this demand in autism, but there’s still a big gap between supply and demand just in autism alone, let’s not even talk about the other areas of outpatient behavior analysis, brain injury, gerontology, and regular application. Just in autism, in the last 10 years or so, demand has just been growing and growing. Frankly, there aren’t enough qualified behavior analysts there.

We have seen a lot of growth in programs. There are a lot of new Master’s Degree programs in behavior analysis now, in the last 10 years, universities all over the world and some growth in Ph.D. programs training behavior analysts. Again, we’d like it to be greater than it is, and we’d like to be able to tell folks that, “Yeah, we can have behavior analysts for you next month or next year.”

Kevin: It’s going to take time.

Gina: It’s going to take time. Like any profession, people need training to practice this one competently and ethically. They’re not going to get that training in just going to a workshop. They need degrees. They need specific coursework. They need supervised practical experience. It takes a while.

Kevin: Gina, this is a fascinating field. Your knowledge depth is so deep that I’m learning a ton. I could continue asking you questions here for hours.

Maybe to wrap things up in what we’re trying to do at Puzzle Ribbon, what we’re finding is that there are, as we organize families to begin approaching their employer about asking for an autism benefit, behavior analysts joining these campaigns and are interested in advocating with the families on their behalf. What role do you see they will play as we begin have a dialogue with these companies and the benefits managers? What role will the providers play in that discussion?

Gina: That’s another good question. What I hope that providers will do is help educate health plans and the people that administer them and so on about this stuff called applied behavior analysis. It’s quite different, my experience has been, from the mental health services that some health plans are familiar with. It’s very different. We’ve seen, as this legislative movement has accelerated these last couple of years, health plans, understandably, struggling to figure out what this is.

Kevin: I’m sure.

Gina: They can’t really fit it into their existing models. That’s part of the problem. They try to pigeon-hole it and make it almost like counseling where you go to a therapist once a week. It’s nothing like that. Behavior analysts, the providers, can serve a very important role, doing a little bit like what I did, in trying to say, “Here’s how we do this. Here are the various ways that behavior analysts work with people with autism. It’s not just little kids and it’s not just this intensive work. We can have effective techniques for working with people with autism of all ages. Look at how we operate.” Our assessment methods, that I was trying to describe earlier, are different than what most health plans are used to.

I have to share an anecdote. I’ve had some health plans contact me and say, “We’re working with these behavior analysts and asking them for documentation. What’s wrong with them? They’re not giving case notes. They’re giving us these funny graphs.” I’ve learned that they’re used to seeing the kinds of notes that medical people write on charts, which are basically anecdotes. I’ve been trained to say to health plans, “Oh, you should be so thrilled.”

Kevin: You should be happy, right. This is measurable.

Gina: You’re getting actually data where you can see . . . with a little bit of training, you can read those graphs, understand what’s happening.

Kevin: Awesome.

Gina: I think the behavior analysts can certainly help the folks on that side and the families as well. Some of the questions that you’ve been asking me, parents have a lot on their shoulders. Often they’re just trying to, if their child’s young, figure out, “What is this autism? What does it mean? What do I do?” They’re bombarded with all kinds of information.

There’s a lot of misinformation about ABA out there, so I hope that well-trained behavior analysts will also be working hand-in- hand with parents on, again, what good ABA intervention looks like, what parents should expect from the behavior analyst. We, of course, think it’s most effective if it’s parents and behavior analysts working together as partners to convince someone to provide health insurance coverage and to say, “Here’s what you’re covering, here’s why, here’s what we do, and here’s the evidence of its effectiveness.”

Kevin: Great. Well, thank you so much, Gina. I appreciate your time. If parents or health administrators want to find out more about this, where can they go to online?

Gina: Well, certainly our website, the Association of Professional Behavior Analysts, APBAhome.net.

Kevin: I’ll link to it in the notes.

Gina: We’ve got materials on our website, relative to health insurance coverage for people with autism. We have memberships for professionals as well as consumers, anybody with an interest in the practice of behavior analysis, a newsletter that has lots of information about these public policies. We do an annual convention in April where we, again, have lots of information available for consumers, health plans, and practitioners. They can always email us through the website. That’s a good start.

Kevin: Great. Thank you so much, Gina. I appreciate your time.

Gina: You’re welcome, Kevin.

Kevin: Thank you very much. Have yourself a great day.

Gina: My pleasure.

My office is in Arlington, VA. Crystal City to be exact, just next to Reagan National Airport.

Every day (ok, maybe 2-3 times a day…) I saunter down to the Starbucks for my coffee fix. And I stare at a huge skyscraper typical of defense and aerospace contractors.

The building has one word: BOEING.

Inside are dozens or hundreds of families struggling with daily life with Autism. Maybe a young couple whose pediatrician just advised that their child is on the spectrum. Or a retired military family caring for an adult child.

Each has unique challenges from Autism but they have one thing in common: their company’s health insurance plan does not cover scientifically-proven Autism therapies.

Their children won’t get the benefit of Virginia’s new Autism law.

Their children won’t get the same healthcare benefits as other Virginia companies like Verisign.

And I think to myself, “I have to do something about this.  One way or another I need to find these people and encourage them to join other Boeing employees like Chris Brenner.  With an united effort we will achieve what Eric Brechner accomplished at Microsoft and get our nation’s children the treatment they desperately need.”

And with my Venti drip coffee in hand (yes…I drink too much coffee!) I head back to my office and get back to work –  smiling, motivated, knowing that I’m working on something important and on the side of the team that will ultimately prevail.

I highly recommend reading my interview with Eric Brechner of Microsoft.  It is the true story of how a few motivated families organized a critical benefit more than 10 years ago and how it provided great return on investment for the company and families.

Key insights I took from the discussion:

On the Importance of the Autism Benefit

If it’s not covered under some benefit then you really don’t know whether or not you’re dealing with a really qualified professional or if somebody’s taking you for a ride…when your child is diagnosed with autism, you’re desperate to do anything you can to have your child reach their full potential. That puts you at great risk for any kind of charlatan out there or someone who means well but really is not a professional.

As others like Arzu Forough have made this point in previous interviews, the financial part of the benefit is but one aspect to it.  Having a covered benefit will pipeline families into the healthcare system, which – for all of its flaws – is currently better than leaving each family at the mercy of the unstructured marketplace.

On the Power of Families Working Together

All 10 of us got this letter [rejecting claims] and … [we] started talking about this and what we were going to do.  We’ll fashion [a letter] together, we’ll make sure we make all our arguments, and then we will send this response to … the Director of HR. We came up with a form response and then added on the bottom some personal story to make it really hit home.  We … all sent these emails on the same day.

`I think it makes a difference to have a group. It’s one thing when it’s just one person and they’re needy and you say, “Ahh, whatever.” It’s like Alice’s Restaurant. I don’t know if it goes back too far or if I’m dating myself but the whole Alice’s Restaurant thing where one person goes in they’re just a loony. Two people go in, but three people, it starts to become a movement. At some point, you get this critical mass where the company says, “We’ve got to take this seriously because it’s not just going to be these 10 people. These 10 people actually got organized and did it, but as soon as you get enough people where you realize, ‘Wow. There’s a significant need out there.’”

Great insight into the power of families working together to (1) construct and argument, (2) add a personal story, and (3) present a united front of reasonable people.

Almost sounds fun, doesn’t it?

On the Importance of Considering the Company’s Perspective

It really felt like we were making decisions and we were doing things as owners of Microsoft. We cared about it. We cared about what they were saying… we took [the approach] of, “We appreciate your point of view. We understand your concerns. We think they’re legitimate. We think we have a legitimate response to that. We want to work with you. We want to partner with you. We know you care and we want to help you find a way to help.”  Most people … they’re good people and they’re trying to do the right thing.

On the Importance of Dialog by Senior Employees with HR

A couple of us were actually fairly senior at the company, knew the Director of HR personally, and talked to him off line about this, one-on-one, about were they going to follow through.

The primary drive for the benefit was at the corporate campus, the main campus here in Redmond.

This is a recurring theme – the need to involve senior people in the dialog at the corporate level.  Critical insight for large, dispersed companies like Boeing and Southwest Airlines.

On Parent/Employee Productivity

If it saves on productivity for the employees, for the parents, that more than pays for it. That’s what we found at Microsoft.  It’s more about is this parent going to go through a divorce that’s going to hurt their productivity? Is this parent going to have to stay home and go to all these doctor visits and emergency rooms and everything else and that’s going to hurt their productivity? Are they going to be doing all these emergency room visits that could be avoided and don’t cost anyway near as much, or perhaps nothing at all, that could be avoided entirely? What are the things that actually contribute to the cost of having this child with this disability and are there ways to avoid that cost with minimal impact to the company  Interestingly enough, the company was most persuaded by a focus on the return on investment through the parents rather than through the child.

People who have not worked with families dealing with Autism do not appreciate how truly stressful and destructive it can be for a family unit.  No employee can be completely productive in such a situation.

On Employee Retention and Loyalty

Out of the 10 of us that started, seven of us are still with the company. That’s 10 years ago.  The other thing that really came out, and it was so strong, was that these folks were proud of their company. I feel this way. I can tell you that just personally. It meant so much to them that Microsoft cared about their employees, cared about their children, cared about their welfare, that Microsoft, as a company, was willing to do this. It made them feel really proud of their company. That’s not the kind of company you leave.

It is worth noting that IT workers change employment roughly every 18 months.  Retention rates this long can be measured in financial ROI terms for the company.

Eric Jones is a 12-year employee of Southwest Airlines (SWA) whose son is on the Autism spectrum.  In this interview he shares his family’s challenges dealing with Autism and why Autism benefits are so important for SWA families.

Please help families like Eric by joining the Campaign for Autism Benefits at SWA.  You can keep track of all campaigns through our newsletter.

Is Your Family Covered by SWA’s Healthcare Plan?

I hope you’ll take 30 seconds to join the campaign and help families like Eric. It is completely anonymous, takes just a moment, and you’ll help bring a desperately needed benefit to American families.

Transcript

Kevin: Hi everyone. I’m Kevin Dewalt founder of Puzzle Ribbon. We help families organize campaigns to constructively approach their employers about getting autism benefits. Today I’m going to interview Eric Jones, a 12-year employee of Southwest Airlines whose son, Will, is on the autism spectrum. Like millions of Americans, Eric has been struggling to deal with the unending challenges from autism, including getting critical services covered by health insurance plans. I’m going to ask Eric about his family’s story and the challenges they face.

Eric, thank you very much for joining us.

Eric: My pleasure, Kevin, thank you.

Kevin: So, Eric, the first question I have for you is can you tell me a little bit about your situation, your family, and the challenges you’ve had in dealing with autism?

Eric: Sure. Well, I, and I think I should genesis, I should begin that conversation by maybe just talking a little bit about Will how he was diagnosed and what the was like because it really is important to building a context around the problem, what we’re dealing with. Will was an absolutely normal baby, a perfect baby, probably the best of the three sons that I have, very quiet, very amiable, slept great, ate great, but his speech was delayed and it was delayed pretty significantly. We had taken him to doctors and asked questions about why his speech was so delayed. The net result of that was, “Well, his older brothers are just doing the speaking for him. You’ve got two older boys that are doing fantastic, just relax, and just be patient.” We did that, we took the word of the doctors and we took the word of his educators that were working with him a little bit. We were in a little bit of denial too, ourselves, we didn’t want to believe that there was a problem.

Kevin: Yeah.

Eric: But what eventually happened was Will’s speech didn’t increase. There were extensive periods of time where he would stim, where he would take grass in the backyard and he would just let the grass fall in front of his face.

Kevin: Wow.

Eric: While as parent, you’re thinking, “Wow, this is a really interesting curiosity that my son does this.” Deep in your heart of hearts, you know that there’s something wrong and something needs to be addressed.

Kevin: It has to be a tough moment.

Eric: Yeah. It was a tough moment. It was very tough on Julie and I, and on the other two boys as well. But it’s also a very humbling moment too, where you have to actually accept that your son has a disability. The first initial reaction is just you’re angry and you want to know why.

Kevin: Right. Yeah.

Eric: That’s, essentially, Kevin, what we did, is we put all our time and energy into figuring out why Will got this diagnosis of autism. At first, the doctors, no doctor would say that he had autism.

Kevin: . . . [SS] . . .

Eric: No, absolutely. No one would commit to an autism diagnosis.

Kevin: This is 12 years ago?

Eric: Well no, for 12 years I’ve been with Southwest.

Kevin: I’m sorry.

Eric: Will is 11.

Kevin: Okay.

Eric: So this was in the late ’90s. This was sort of the beginning of the epidemic, sort of the one in, I think it was probably 1 in 10 or 1 in 12 kids at that time who were coming down with autism diagnoses. But we would go in and we’d talk to these doctors and they’d say, yeah, well it could be a hearing problem. So they would do a hearing test. It became a process of elimination. They were just trying to eliminate everything else except autism.

Kevin: Yeah.

Eric: Because health providers were so . . . they didn’t want to commit to a diagnosis, we took him to a study at the University of Illinois at Chicago and had him studied there. You know, took measurements of Julie and my faces, drew blood, it was a very intensive study. Now the results of that study, they said that your son is classically autistic and he’s on the autistic spectrum.

Kevin: Okay.

Eric: So from there it was, you know what, he’s autistic. How he got that way is really not the problem.

Kevin: Right.

Eric: The problem is how we’re going to make his life better and change public perception a little bit about autism, what it is, and being proactive getting Will the best care that we possibly could.

Kevin: When he was diagnosed, did they try to steer you towards any particular type of therapy? Was there behavior treatment they recommended or drugs? How did the medical profession sort of handle the initial diagnosis?

Eric: Well, I would answer that question with a single word and that would be ambivalence.

Kevin: Yeah.

Eric: They weren’t sure. The study at the University of Illinois in Chicago was dealing with psychotropics like, Zoloft, or some psychiatric medications, which didn’t help a preponderance of the people that were studied. So obviously, they were looking for some sort of medical way to treat autism. It wasn’t until we started the ABA program, the Applied Behavioral Analysis program that we started to see strides with Will as far as communication.

It was, you know, I’ve got to be honest with you, Kevin, and this will resonate through all of the people that you talk with I’m sure, that very beginning, just trying to draw communication with your son, it’s more frustrating for him than it is for you.

Kevin: Right.

Eric: He wants a voice.

Kevin: Yeah.

Eric: He wants to talk. The autism keeps him locked in to where he’s not able to do it.

Kevin: Have you seen, briefly, have you seen “Wretches and Jabberers” yet?

Eric: No, I haven’t. I haven’t seen it . . .

Kevin: It’s great.

Eric: But I’ve heard tremendous things about the film.

Kevin: Yeah. I actually got the chance to meet them at the Autism Society conference in Orlando a couple of months ago. It was, I mean, I was crying. I have to say it brought tears to eyes. It was so touching to see how these people got closer.

Anyway, I didn’t mean to interrupt you, but it was just relevant to what you were saying.

Eric: No, I understand. I think, and you bring up a very valid point, the media is an exceptional outlet to try to get these back-stories out there. I mean, being sort of a kid of the ’80s, you know, you say autism and people say “Rain Man.” You know, and they think that your son can do really incredible things and he’s a savant. So the public perception of autism is really what needs to be changed more than perhaps why it’s happening and what it’s happening for. Sure, you want to know why and you want to try to prevent it, but it doesn’t mean that we can’t accept the people that do have that diagnosis right now.

Kevin: Yup.

Eric: But the media, and there’s a lot of films and a lot of documentaries coming out that are talking about that. That’s what really gave us hope, is that some of the documentaries are saying, well listen, maybe we shouldn’t look at people with autism as having such a disability, but as simply as having a problem communicating.

Kevin: Yup.

Eric: That started our family changing. We used to talk about Will in front of him because he didn’t have a voice so you don’t really address someone who isn’t address, you know, there’s no give and take in a conversation so you start to talk about that person right in front of them, sitting there. It’s the ultimate exclusion.

Kevin: Isolation.

Eric: Yeah, it’s the ultimate isolation. It wasn’t until we changed that and started to talk directly to Will, whether he responded to us or not, there are, you start to learn verbal cues that your son says. That again is what the true thing about ABA is that it gives you those tools and those necessities to have a conversation and to maintain a level of communication that takes away that frustration that autistic kids feel. I can give you an incredible example of how this benefits itself. Go ahead.

Kevin: Yeah, maybe you can back to a point you earlier, when you talked about how the ambivalence of the medical establishment in giving you the diagnosis, one of the things we’ve heard from different families is the absence of an autism treatment or of autism benefits really creates a lot of that frustration for families because they’re not tracked by the healthcare system into a scientifically validated service like behavioral analysis. Was that your experience as well?

Eric: Well the ambivalence I think is that. Is that the basic community of doctors believe that it is a neurological malady that manifest itself in a behavioral problem. So they say, well, here the schools and the school districts should be given the burden of having to treat and deal with autism.

Kevin: Right.

Eric: But it’s not really the venue to treat autism. The venue to treat autism is still through a medical conduit. The connective tissue between autism and social interaction is ABA. So, you know, what insurance companies traditionally did was sort of hide under, or hide behind the veil of, this is a behavioral problem that needs to be addressed in the school they same way somebody acting out in class would be treated, which is an incredible disservice to autistic children.

Kevin: Absolutely.

Eric: So the big thing that insurance companies need to understand that the treatments for autism should be covered under that insurance umbrella because it is a genetic predisposition, which makes it a medical problem, not so much a behavioral problem. So, that’s the real perception that we’re trying to battle.

Kevin: Well, I guess it also, and it sort of gets back into the reason for Puzzle Ribbon and why we’re doing these campaigns, is that beyond just the financial aspect, the fact that there’s no coverage for autism just seems like it forces families to figure all this out on their own and when you’re being bombarded by information from all different realms, some of it of questionable scientific validity — and that’s perhaps the nicest thing I can say about some of the things families have told me about — it’s really hard for you to figure out what’s option to take. Was that your experience as well?

Eric: Definitely. Yeah. One of the people you interviewed, I think, referred to it as a charlatan, there are plenty of charlatans out there. I think the gentleman from Boeing addressed it most aptly, was that if you look up autism online, just a Google search, you’ll see “Cure for Autism” might be the first 12 things that come up and if you’re a fresh diagnosed family the first thing you click on is, how do I cure this thing?

Kevin: You’re desperate, right? You’re scared.

Eric: Well, absolutely. You don’t understand your child. You don’t get it; your child doesn’t get you. Your child can’t say that he loves you. You’re not sure your child can understand the concept of love so you are absolutely desperate to get anything you can and it will drain families’ bank accounts, and it will drain hope and fears.

Kevin: It just becomes so disruptive to the family unit at that point.

Eric: Yeah, it’s amazing. The amount of wheedling, you’re weeding out therapies. That was a big advantage of us getting involved in a study is that the study and some of the doctors, and this may be helpful to some other autistic parents out there, is that if you get involved in a neurological study or a study at a university, they can weed out some of those people that say that, you know, a gluten-free diet was very popular for a long time and for some parents it still is. Some people think that is an option, but for us, for Will, ABA has been hands down the most effective means of acquiring a voice for him.

Kevin: Right. So then I guess maybe the basis for a conversation here it just that’s a benefit that’s currently not provided by Southwest Airlines’ health insurance. I guess, Southwest is a self-insured company, meaning they fund their health insurance out of the cash flow and not through a third-party insurance company. So even though, I think, 25 or 26 states now have passed laws mandating autism coverage at a some level or another, families of Southwest Airlines, and Boeing, and some of these other companies won’t get that benefit because they’re self-insured.

So I guess the next question in line is how long have you been with Southwest and what’s it been like as an employee there? I think you mentioned 12 year in the beginning of the show.

Eric: Yeah, it’ll be 12 years this April. My experience with Southwest Airlines has been incredibly positive. It’s the longest job I’ve ever held.

Kevin: That’s great.

Eric: It’s the only job that’s held my attention that long. I think a lot of people that work in the airline business have had to work for a multitude of airlines. It’s a very volatile industry. Southwest is very, very good at its business model and a part of that is their self-insurance. I’ve have nothing but a tremendous amount of respect for the leadership of Southwest Airlines, the people that I work with and they way that they conduct themselves. The customer service model I think is exceptional. But I do think this one discretion, which just happens to affect me and my family, is something that needs to be addressed and something that needs to be looked at.

Kevin: Yeah, absolutely. You know, as a company that serves the public, I think one of the things we’re going to have to continue to talk to Southwest about is how important for them, as being part of our society, is to offer these benefits for families.

So, Eric, I guess that maybe it’s sort of getting close to wrapping things up. Can you talk to us a little bit about what you would like to say to other Southwest employees who are in the bunker dealing with these situations and why a campaign like this is so important to everyone?

Eric: Yeah, absolutely. The biggest thing about autism families and children with autism is just coalescing a group of people, you know, us individually writing letters and saying things to people is great, but just creating a network is so much more effective at dealing with these issues than just individually. It’s such a much more profound way to interact with other autistic people, especially if you work at the same workplace.

Kevin: Yeah.

Eric: You’re dealing with the same people. You know the same connections with the people that work in the upper levels of management. Southwest is a very transparent company that listens to their employees. So if there was a coalesced voice of employees that have children with autism that are struggling the same way that Will is, I think that Southwest, a company that bases itself on love and that loves it’s employees, and employees being first, that if all of us came together in a collective voice and said, “Hey, we need this and we need this for our kids.” I mean the majority of the employees of Southwest Airlines that have autistic children have to be on FMLA because if there is a problem with their child they have to time off work to go deal with their child. So that’s lost job time.

You know they’ve had to cover, my son had a cavity, an abscessed tooth. He had to be put under general anesthesia, which cost the company’s insurance policy $10,000 just to have the tooth removed. Where if ABA was involved I could have explained to Will through that conduit what was going to happen and he wouldn’t have had to have the general anesthesia and cost the company that exorbitant about of money. So there is a cost savings motivation for Southwest Airlines, too.

So, I just want to reassure people that a singular voice is great and it’s important to be enthused, but a collective voice is so much more effective and so much more pertinent when trying to get this message out there.

Kevin: Well, thanks a lot, Eric. I appreciate your willingness to take the time to speak up. On behalf of the other families out there who are dealing with this issue, thank you very much.

If you are a Southwest employee or you’re a part of the support group, the therapists, the grandparents, everybody who cares about this issue, please, sign up for the campaign and get involved. It’s going to take – as one of my advisors said, “If you show up as one person asking for something you’re a fruitcake. If you show up with a friend, you’re a fruitcake and a friend. If you show up with 50 people and suddenly you’re an organized army and you can get a lot of things done.” That’s, I think, is really what it’s going to take. It’s going to take a lot of us speaking with one voice about how important this is for the company, for the people, and how important it is for our society.

So, thank you again, Eric, for your time. I look forward to working with the campaign. I have no doubt that we will win and the best of luck to you.

Eric: Kevin, thanks so much and thanks for all your efforts and all your time.

Kevin: Great. Thank you.