Saturday, January 18, 2014

Applied Behavior Analysis - Reasons to try it

When my son was first diagnosed, I had no idea what ABA was.  Even after living with autism and reading tons about it, ABA was an abstract concept that I could not fully understand the significance of.  Luckily for me, Dylan's Early Interventionist had the foresight to submit his name to the state medicaid ABA waiver program for kids with Autism.

When she informed us that his name had been pulled (lottery style) and he was going to receive services, I had absolutely no idea what we were in for.  I was actually overwhelmed and intimidated by the thought of "intensive" home therapy, and considered turning down the slot.  I am immensely glad I didn't.

ABA is not easy, it is not a quick fix, but it is worth the time and dedication it takes.  Through ABA I learned how to analyze my son's behaviors, social, academic, sensory, emotional, to determine better ways to help manage them, change them or address the needs they indicated.  I have learned how to help my son learn, how to help him cope with anxiety better, how to decrease OCD and sensory triggered behaviors and how to help us all have a more peaceful and comfortable life together.  It's not perfect, it never will be perfect, but by learning about ABA I am better able to handle situations effectively when they occur.

If you are considering ABA and whether or not to try it with your child, I would advise with a resounding YES!  And there are many reasons why it's a great intervention for your child and your family.  I could try to explain and expound on these reasons, but luckily I read a wonderful article recently that explains it more eloquently and clearly than I probably can.  Here is the link to the source - followed by the full text of the article.  Again, NOT my work, re-posting a very well written article with credit and reference:

Source Article: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3196209/

The Top 10 Reasons Children With Autism Deserve ABA

figure i1998-1929-4-1-72-f1001
Often we who advocate for applied behavior analysis (ABA) for children with autism spectrum disorders, construct our arguments based on the scientific evidence supporting effective interventions. For people trained in science, this might prove a convincing edifice upon which to construct an argument. However, the audience that most needs to hear this argument, that is, the parents of children, especially very young children, diagnosed with autism, come from varied backgrounds and diverse life experiences. There is no guarantee that making the case for effective intervention based on the science behind the intervention will be particularly convincing. In fact, there are good reasons to doubt that basing an argument on science will persuade many. For example, a Gallup poll conducted on the 400th anniversary of Darwin's birth showed that fewer than 40% of Americans believe in evolution ().
This essay attempts to make the case for intervention based in ABA largely by moving beyond simply stating that the science supports this intervention. Adopting the format made famous by David Letterman of the “Top Ten List,” and illustrating most points with stories of an engaging child with autism (my son, Ben) this essay tries to provide an easily accessible case for the multiple benefits of ABA intervention for children with autism.1

Reason 10 Children with autism deserve ABA because there is more scientific evidence demonstrating ABA “works” than there is for any other intervention or treatment

This reason is often the most important reason for behavior analysts, but not always so for parents of children with autism. Parents rarely cite the many hundreds, perhaps thousands, of studies in theJournal of Applied Behavior Analysis and other journals when asked why they chose ABA to help their children with autism. Instead, many parents point to just one book: Catherine Maurice's, Let Me Hear Your Voice.
Maurice's book tells her family's story of two children diagnosed with autism and their use of behavioral interventions, and the remarkable progress both her children made—both acquired so many skills that they lost their original diagnoses. In fact the research tells us that quite a few children diagnosed with autism, perhaps as much as 40–50 percent, can learn enough to return to mainstream classrooms if they receive high quality, intensive, evidence-based interventions early enough (;). For these children and their lucky families, ABA clearly “worked.”
But I would like to suggest that ABA can “work” in other ways as well. Many of us, who were inspired to start down the ABA path by Maurice's book, realize at a certain point that our children are not going to lose their diagnoses and that they are not going to mainstream. Nonetheless, ABA has “worked” for them. ABA worked to teach them skills, to teach them independence, to teach them to speak, to use the bathroom or sleep through the night, to gain the skills they will need to hold jobs as adults. We need to expand our understanding of what “works” means, and we parents need to speak more persuasively of the difference behavioral intervention has made in our children's lives. So, taking a cue from Maurice's book, I am going to tell you some stories about my son, Ben, and try to explore how ABA has worked for him and for us.

Reason 9 Kids with autism deserve ABA because they are human

You might think that the humanity of children with autism goes without saying, but I'm afraid you'd be mistaken. There are a variety of views of autism that at their core deny the basic humanity of individuals with autism, and that are particularly dangerous because they can too easily lead to denying that our kids can learn.
In the first place, there is the old school view of autism as horrible, intractable, and untreatable. This view is reflected in early popular media accounts of people working with children with autism, which began to appear in the press in the 1960s. Life magazine, in 1965, referred to children with autism as “far-gone mental cripples,” “whose minds are sealed against all human contact” (). The New Yorker in 1968 described autism as “organic and incurable” and praised those who work with children with autism because “they encounter beings so badly scarred, so remote that it must be hard for a psychoanalyst to even acknowledge them as fellow creatures” (). The same article states that after three years of treatment, one patient was “becoming a human being.” This view of autism renders individuals with autism as less than human.
At the other extreme are portrayals of individuals with autism as better than human, possessing gifts and abilities beyond those of “non-autistic” individuals. William Stillman in his 2006 book, Autism and the God ConnectionRedefining the Autistic Experience Through Extraordinary Accounts of Spiritual Giftedness, gives examples of that spiritual giftedness, which includes a wide variety of supernatural talents by people with autism, such as the ability to read other people's minds, to telepathically communicate with both people and animals, to know the future, to be familiar with events that occurred before they were born, to perceive auras, and to speak with angels or other spirit guides. Stillman is so enamored of the spiritual gifts of those with, in his words, “autistic experiences,” that he portrays them as thoroughly “other” than human beings, possessing a wide range of super-human, supernatural abilities and talents.
And, somewhere in the middle, but also fundamentally disparaging the basic humanity of individuals with autism, are certain voices from the neuro-diversity movement. In an essay famous in the blog-o-sphere, Jim Sinclair gives advice to parents of children with autism in his 1993 reflection titled: Don't Mourn for Us. He exhorts parents not to mourn for children who have been diagnosed with autism, but rather embrace the role of advocate for this “stranger” who has come into our lives. He says that when we look at our children with autism we should think:
This is an alien child who landed in my life by accident. I don't know who this child is or what it will become. But I know it's a child, stranded in an alien world, without parents of its own kind to care for it.
Can I just say that the phrase “without parents of its own kind” really sticks in my craw? Mr. Sinclair was apparently not in the room when I gave birth to my son, but by my recollection (which is fairly strong because I was sadly unmedicated), is that my child gestated in my body for nine months, and then was delivered, birthed by me from my very body. Then, in fact, he went on to draw sustenance from that same body, by nursing for 18 months or so. In fact, it would be hard for me to name a single other being on the entire planet who is more “my kind” than my son Ben (unless we remember his older brother Sean). So pardon me if, as a woman who has given birth, I am offended by the claim that my child is an “alien.” The point here is that this is an example of yet another view of individuals with autism that denies their fundamental humanity—a humanity that they share with all of us.
So, once upon a time, individuals with autism were portrayed as less than human, and today they are portrayed at times as more than human, or by others as, well, different from human. All of these views skirt perilously close to denying that people with autism are human—and this is always dangerous.
The autism spectrum is but a subset of the human spectrum—but it is part of the human spectrum. This is important because behavioral scientists have shown us some basic insights into how humans learn. When we deny the humanity of individuals with autism, we risk denying that they can learn.

Reason 8 Children with autism deserve ABA because it will help their parents be the best parents they can be for them

I think all of us parents want to help our children reach their potential. My older son Sean loves to play the trumpet, and according to his teachers, is apparently pretty good at it. Now, I can't teach him much about the trumpet or music in general, but I can make sure he takes the time to practice and help him to develop the habits of serious musicians. In this way, I can help him reach his potential.
In the same way I want Ben, my son who has autism, to reach his potential, but this goal can be trickier to achieve. Parenting a child with autism is a lot like parenting a typical child, but everything you know about parenting a typical child needs to be taken to an extreme to parent your child with autism. In fact, I think the image of “extreme parenting” fits well the task of raising a child with autism.
The Encarta World English Dictionary defines extreme sports as, “a sport considered more dangerous and thrilling than ordinary sports and often involving hazardous stunts and tricks,” which I think translates to what is required of parents of children with autism very nicely. “More dangerous and thrilling, involving hazardous stunts and tricks” pretty much describes the average weekend at my house. Let me give you some examples of extreme parenting.
All parents have to wean their babies off formula or breast milk and introduce solid foods, but most don't need a behavior analyst and a data-based program to teach chewing and swallowing of chicken nuggets, like we did. All parents help their children learn to talk, but most don't have to explicitly and separately teach their child how to make the /m/ sound and how to make the /ah/ sound using manual prompting to guide their mouths, before they hear their child say “mama” for the first time.
Many parents worry about the quality of their children's education, but few need to start a new ABA-based school just to provide a place where their child will actually learn.
All parents know it is best to remain consistent with their children, but few pay for the occasional lapse like parents of children with autism do.
Parenting your child with autism is simply an extreme version of parenting. All parents know that they have an impact on their children's lives, but few have the potential to have the impact that we do. We parents of children with autism have to work harder to assure that our children learn all they can, reach their potential, and when we rely on ABA to measure progress and guide teaching, we know we are making all the difference we can.

Reason 7 Children with autism deserve ABA because it will help teach them how to sleep through the night and use the bathroom

I have to confess that I do not have any studies in hand that show behavioral intervention can help children sleep through the night.2 But I do know that sleeping through the night (or just as good—staying in bed for the night), is one of those skills that parents are going to have to largely teach on their own—much like another important skill—toileting. Even if you have endless access to the best behavioral intervention in the world (and who has that?) certain skills are going to require deep, ongoing parental involvement in teaching. And your best friend here in achieving success is data collection.
Collecting data is not rocket science, it is not brain surgery, and it is not just for professionals. All parents want to see that their kids are learning, and most can just look at report cards to check this. But parenting a child with autism is, as I said before, like an extreme sport, so we can't wait for report cards—we need to measure ourselves. Here's what all that has meant in my life—here's what we've most often directly and frequently measured—toileting.
I have in my basement no fewer than six years of my son's toileting data—weekly data sheets that track each urination, each bowel movement, each accident, and each spontaneous initiation. Ben's father and I took most of the data. Why does this matter? Well, at the beginning, we knew that teaching was effective when we were quickly able to move to spontaneous initiation, and get him off a timed schedule of bathroom visits. How did we know to do so? The data revealed few to no accidents. Then, even with Ben initiating spontaneously, there were few accidents. But when we did have accidents, especially the dreaded but familiar bowel movement accidents, we were able to look at our data, see when these were likely to occur, and work to prevent them. Preventing the behavior helped keep it from becoming ingrained. Then, after many years, when I noticed he occasionally woke up with his pull-up completely dry, we began taking morning data on the pull-up.
After Ben was dry for about six weeks in a row, I took the pull-up away. The data revealed behavioral patterns that guided our intervention. The data showed us what to do. The data demonstrated that our son has this skill—a very important skill! He can go to the bathroom independently. He can sleep through the night in regular underwear. He learned this as quickly as he did because we directly and frequently measured his toileting behavior. This made a huge difference for all of us in the family. Now we can take Ben to his brother's concerts without an extra change of clothes in the bag. We can all sleep through the night without worry. We can stop spending our money on pull-ups! Yeah! And Ben can feel like any other accomplished, competent 10-year-old in the world, and go to the bathroom on his own, when he needs to. Probably, this matters most to him.

Reason 6 Individuals with autism deserve ABA because it is the best defense against the tyranny of low expectations

I suppose there are many stories to be told of low expectations for our children with autism that have to do with school districts, but what comes to my mind first is actually churches. As a member of the Autism and Faith Task Force of the Elizabeth M. Boggs Center for Developmental Disabilities, I occasionally get e-mails passed to me that recount terrible, painful stories of individuals with autism, who have apparently not had access to quality interventions, and whose families bring them to church with less than happy results. The most famous of these cases occurred in the Midwest and resulted in a church seeking a restraining order against a large 13-year-old boy with autism whose family used a variety of distracting and unorthodox methods to calm him during services, including gently binding his limbs and sitting on him. When this story hit the media, it was a scandal, and the parents felt betrayed by the church because it would not “accept” their child. Although this story received the most media attention, it is not an isolated case, unfortunately. And what is most striking to me are the parents' feelings of rejection and even “hatred” when a congregation seeks to intervene on account of dangerous behaviors of individuals with autism. Low expectations are wrong when school districts engage in them, but they are especially tragic when parents themselves come to believe that others must accept their child's problem behaviors or lack of skills, whatever they are.
Accepting a person does not mean accepting the proposition that they cannot learn. In fact, I would argue just the opposite—truly accepting a person means embracing the proposition that however disabled they might seem, they can learn. And through ABA, they can learn well.

Reason 5 Children with autism deserve ABA because it can teach them the skills necessary to make friends

For children with autism who have good language skills, behavioral intervention can be used to teach and support learning the social skills necessary to successfully interact with their peers. There is an increasing amount of research into peer interactions, and this is good news for many of our kids. For my son, however, for whom language remains and always will be a challenge, it turn out that social interactions were facilitated by, of all things, ball skills.
I'll let you in on a secret—when we first started teaching ball skills at home, Ben did not like it, and neither did I. When he picked the ball skills program from his activity schedule, the therapist would have to come and find me because it always took two of us to prompt him through the motions. One of us would have to stand behind him and physically prompt his arms up to catch the ball, which would otherwise hit him in the chest and drop to the floor. This went on for months, and I thought to myself often “why are we teaching this?”
Fast forward a few years ahead, and what we have now is a child who loves playing with balls and who is very good with them in a variety of ways. The teachers at Ben's ABA school, REED Academy, started encouraging him to shoot baskets as soon as he was big enough to hold and throw a basketball. He is now a more accurate shot than anyone else in our household. In fact, when we are shooting baskets in the backyard, he will often wait until I miss a shot (which takes very little time!), then retrieve the basketball, stand in the exact same place I just shot and missed from, and sink the basket, underscoring his superior skills—in case I had missed it.
Balls provide hours of entertainment, and as a bonus, they travel well. We've taken balls with us to grandma's, on beach vacations, and packed them in our luggage on a trip to Italy. Ben works to play basketball, soccer, mini-golf, or catch with his classmates regularly in school. But even more important, as this skill has generalized, it has become the pathway to social engagement with kids who do not have autism. When he goes to the playground, Ben always brings a ball, which happily often serves as an SD(discriminative stimulus) to the other kids on the playground to approach him and ask to play catch. Most kids are quite satisfied with my explanation, “He doesn't talk much, but would like to play catch with you,” and off they will go, my son and a new friend for the day, playing together quite typically.

Reason 4 Individuals with autism deserve ABA because it enables their parents and teachers to capitalize on their strengths and preferences

For many of our children with autism, a large part of effectively teaching them is first figuring out how to motivate them. Parents and teachers become keen observers of our children's interests and preferences because we recognize the importance of grabbing all the teaching opportunities presented. When you note something your child likes, you can capitalize on that preference and use it to motivate the child. For example, once we noticed how much Ben liked to pour liquids into glasses, we stopped filling glasses before dinner. Why? Because it was often a little challenge to get Ben to begin to eat his food. I used to reinforce his eating healthy foods with cookies or chips, which undermined the value of the healthy food. But now we simply sit down to a table of empty glasses, and when Ben requests that they be filled—for to him an empty glass is simply abhorrent!—I remind him, “Eat your chicken and then you can pour the milk.”
So, that is one example how ABA has taught me to attend to and leverage Ben's preferences, but I've also learned to look for and capitalize on his strengths. The very question of defining strengths is tricky because perspective matters here, and what may be defined as a deficit in one case, may turn out to be a strength in another.
Readers Digest used to have a feature that demonstrated this point well, and made a little joke of demonstrating how essentially the same sort of behavior could be described very differently depending on one's relationship to the behavior. So for example, you might note that people tend to say:
I'm trusting. You're naive. He's gullible.
I'm sensitive. You're high-strung. She's neurotic.
I'm concerned. You're curious. He's nosy.
Now, this works with some of the behaviors we see in individuals with autism as well—and perspective matters in how you view behavior. For example,
I am focused. You're obsessive. He's perseverating.
Or
I like things to be predictable. You're stuck in your
ways. He's inflexible and rigid.
I realize that the definition of autism is to be found precisely in these behavior extremes, and I am, again, making the point that the autism spectrum is a subset of the spectrum of human behavior, but I also want to suggest that there are opportunities to capitalize on these preferences. The place I've had the most success capitalizing on Ben's attention to routine and ability to discern and remember patterns, is in teaching him to attend religious services. For an individual who likes predictability, going to mass at a Catholic Church is a perfect fit. It is the same order of events, in the same place, at the same time, on the same day every week. You are even usually sitting by the same people, because plenty of folks who do not have autism like predictability, and sit in the same pew week after week. Years of carefully shaping Ben's behavior have resulted in a child who is the first one on his feet when it is time to stand for the gospel, the first one to kneel when the consecration prayer begins, and the first one to jump to his feet and stand when the music starts and the mass begins. So, yes, the DSM-IV may speak of “inflexible adherence to specific, nonfunctional routines or rituals,” but not all routines or rituals need be “nonfunctional” and you can find opportunities to turn deficits into strengths when you put your ABA glasses on and think “How can I use this preference? How can I take advantage of this behavior?”

Reason 3 Children with autism deserve ABA because it can teach parents how to respond in the moment

Because our children with autism have so much to learn, it is critical that parents become fluent enough in the basics of behavioral intervention to be able to apply principles and techniques at home. We know that the more times a mistake is practiced the more ingrained it will become (think of a word that you routinely misspell). The more times you misspell the word, the more you get used to the misspelling and the less likely you are to be able to discern correct from incorrect spelling. Rehearsing mistakes makes it less likely you can even notice that the mistake is a mistake.
Well, it is the same with our kids, the more often they make a mistake the more likely they will be to repeat it. So parents need to know how to respond in the moment, both in terms of capturing motivation and also in terms of preventing mistakes.
In fact, we parents spend a lot of time with our kids, even parents of children with autism, and we need to learn enough behavioral techniques to make the best use of that time. There is a short passage from Catherine Maurice's seminal book, Let Me Hear Your Voice, which has inspired me for years. At one point, while discussing her daughter's progress, Catherine Maurice says to Bridget Taylor, “I have you ten hours a week,” and Bridget points out to her in reply, “Yes, and you also have you, Catherine, carrying through this program a lot more than ten hours a week.” Reading this for the first time, just weeks after my son was diagnosed, it was as though a little bell went off in my head when I realized that no matter how many “hours of ABA” we get for Ben, to best help him, I have to do this work as well. In the world of our children with autism, time equals power, and the people who spend the most time with your children have enormous influence over them; and generally speaking the people who spend the most hours with your child is YOU.
I am always trying to get better at this goal of responding in the moment, taking advantage of every teaching opportunity presented myself, but still have a long way to go. For example, for many years, I have been working on teaching Ben to say some prayers at night before he goes to sleep. At first, I simply said the standard prayers Catholic kids are taught, the Our Father and the Hail Mary, to him before bed. Then it occurred to me that he could say some of the words to the prayers himself, and so I would start a phrase, but stop when we got to a word I knew he could say. So it looked like this:
I would say, “Hail . . .” and Ben would continue,
“Mary.”
Than I would start the next line, “Full of . . .” and Ben
would continue, “grace.”
We did this for several months with success. As an aside, I have to point out here that one of the great things about teaching your child prayers or other religious rituals or observances is that you can take your time. I was very encouraged when I realized that even if I took a full 10 years to teach Ben to say the Hail Mary, he would still know it before he was 20, and still be able to recite the prayer his entire adult life. While I do need to assure he makes progress, the progress can be very slow and still confer meaningful benefit for the majority of his lifetime.
Anyway, we continued happily our nightly recitation, but I added an SD, and would always start by asking
“Ben, are you ready to say your prayers?”
Ben would reply, “Yes!”
So, I'd start, “Hail . . .” and Ben would say, “Mary.”
Then I'd say, “Full of . . .” and Ben would say,
“grace.”
This was going well right up until the time he began a program at school called “Safety Questions.” In this program he learned how to answer important questions he might be expected to answer if he were ever lost, such as, “What's your address?” or “What's your father's name?” He also learned how to answer the question “What's your mother's name?” by replying, “Mary Beth,” which I figured out one night when we were saying our prayers.
I began as usual, “Ben, are you ready to say
your prayers?”
And Ben said, “Yes!”
So, I said, “Hail . . .”
And Ben grinned sneakily at me and said,
“Mary Beth.”
Whoops, I thought, this will never do! I really cannot have my son going around saying, “Hail Mary Beth,” so I thought about how to problem solve this and came back to the concept of preventing mistakes and the value of behavioral momentum. I figured my only hope was to interrupt him, right after he said “Mary” but before he could say “Beth.” If I jumped right in and quickly started the next line, “Full of . . .” I figured that Ben would then say, “grace” and we could move on successfully.
This worked the first night, and he seemed a little annoyed that I had cut off his little joke, but once I kept saying the prayer, he stayed with me and moved on. Once I got him back on track, the behavioral momentum was working for me. And this worked the second night as well, I said “Hail . . .” and Ben said, “Mary—” and I jumped right in with “Full of . . .” before he could get the word Beth out. He speaks slowly enough that I could easily interrupt him, and once we just moved the prayer forward he would focus on the next word he was supposed to fill in. He was annoyed with me, but it was okay. I thought I had fixed this problem and was feeling proud of myself. Then on the third night, when I was sure this problem was behind us, I began as usual,
“Ben, ready to say your prayers?”
Ben said, “yes.”
I said, “Hail . . .”
And he looked me right in the eye, and said, “Beth!”
Even though you know you are not supposed to do this (because you are likely reinforcing the behavior), there are simply some times when you have to laugh—and this was one of them. I believe at that point I just said to him, “Okay, buddy, you win, let's say the Our Father.” Over time, I've come to rather relish the fact that a fairly significant and interesting aspect of my life is being out-smarted on a regular basis by a child with a diagnosis of significant developmental disability. And it also bears mentioning here that ABA will not destroy your child's sense of humor.

Reason 2 Children with autism deserve ABA because some day their parents are going to die

No parent likes to think about this but we parents of children with autism really need to. We must make sure our kids learn the skills they need to be as independent as possible as adults and as connected to their families and their communities in healthy ways as possible. We must teach now to assure that they are able to hold jobs, and to engage in volunteer work to give back to communities that support them and thus be connected through other networks than just the social service delivery network that they may have to rely upon. We want them to be people sustained by a caring web of relationships; that is what we need to work toward before we die.
We all want our children to be a valued part of the communities in which they live—so let me tell you a story about Ben to show you what I mean.
When Ben was quite small, about 3 years old, he was completely obsessed with automatic doors, especially the ones at our local grocery store, which was a stop on his almost nightly walks through town. Ben's absolutely favorite thing in the whole world was to be allowed to go in the IN door and run immediately through the OUT door, and to do this again and again. While we were always careful not to get in the way of other customers, my husband and I still feared being reprimanded by the management. After all, we were letting the air conditioning out in the summer and the heat out in the winter. We knew that if we interrupted this behavior, Ben would have a tantrum, but of course, others looking at him did not know this. We shrugged off the realization that people at the grocery store probably just assumed that we were bad parents, and waited for the day we would all finally get in trouble.
One day, a store employee did come over to us, but instead of scolding, he bent down to give Ben a handmade badge, carefully cut out of blue construction paper with the words, “Door Inspector,” written on it. That is precisely the sort of acceptance that all people with autism (and without) long for, yet so rarely receive.
While this true story has become for me an example of real community acceptance, I know it is not an accident that this occurred when Ben was 3. Had he been engaging in this behavior when he was 13, things would have turned out differently; and had he been doing this at 23, likely the police would have become involved. So, we have taken the rather laborious steps needed to make sure that Ben can walk through the automatic IN doors without immediately seeking the OUT door; we have made sure he can shop for groceries, make eye contact with store employees, and say, “Thank you.” We have used ABA to teach him to behave in such a way that the grocery store employees will be as welcoming of him as an adult as they were of him when he was just an adorable 3-year-old, “inspecting” their automatic doors.

Reason 1 Individuals with autism deserve ABA because it can prepare them to be their own best advocates

I used to think that self-advocacy was something that only individuals with autism who had fluent language skills would ever attain. I know it is not likely my son will sit in on a transition planning meeting at age 14 and clearly tell all gathered around the table which job skills he would like to learn. He might be able to point at pictures, or use a type to talk device to indicate preferences, but I suspect it will always be a challenge for Ben to communicate his hopes and dreams about his own future to others. Because of this, I used to think that self-advocacy was not a real goal of his, but I have come to see otherwise—through our years of learning how to attend church services.
I began taking Ben to mass only when he was five and a half and already had some of the prerequisite skills, such as the ability to sit, mostly still, without making too much noise for the 50–60 minutes it takes to get through the Catholic liturgy. Relying primarily on shaping, or reinforcing successive approximations of the target behavior, over the course of several years, we worked on his mass participation behaviors. We aimed first simply for getting through the mass without making too much noise. When he got good at that, I worked on teaching Ben to stand and sit at the appropriate times. Then much later, I taught him to kneel, and to shake hands for the Exchange of Peace, part of every Catholic mass. Some things he learned were easy to teach because he enjoyed them so much, like dipping his finger in the font of holy water, so that he could make the sign of the cross, or dropping the envelope in the collection basket—these were things he looked forward to, and served as natural reinforcers contributing to his enjoyment of attending church.
If you were to see him today on any given Sunday, you would see a child walk quickly to the front door of the church, but hold it for others who need to enter—and if you listen closely, you'll hear him say “you're welcome” when people thank him for holding open the door. He then goes directly to the nearest holy water font, dips his finger in, and blesses himself saying a somewhat abbreviated, “Father, Son, Holy Spirit, amen.” This occurs at the door of the church, where many people are gathered, including the priest who will preside at mass, and all the liturgical ministers—altar servers, Eucharistic ministers, and lectors—and they all watch him each week and smile at his appropriate behavior. Recently Ben has adopted the practice of shaking each one's hand, and saying, “Hi” to all who are gathered for the opening procession.
Ben then leads us to a pew and makes the choice about where we sit, slightly varying the location each week. He kneels and blesses himself appropriately as he enters the pew, and the people already sitting down watch him, smile, and greet him. He is the first one on his feet when the music begins the service, and he knows exactly what to do, including when to stand, when to sit, and when to kneel through the entire mass. When it is time to exchange a greeting in the service, Ben makes sure to leave no hand untouched, and delights in reaching across pews and around us to greet everyone—and everyone seated even remotely near us, goes out of their way to shake his hand. He receives communion appropriately and independently each week, both the bread and the wine, and the ministers who distribute communion appear honored when he is in their line, and impressed at his clear, “Amen.” At the end of the mass, when everyone else leaves, even though the choir is still singing, Ben remains in place—he attends to them until they are done—and then, often, he claps. The choir loves him.
People who sit behind us routinely tell me that they so enjoy watching Ben during the liturgy. Some have even said that they sit behind us on purpose, just so that they can watch Ben. People whose names I do not know greet Ben by name. And everyone who sees him at mass knows that he is absolutely capable of appropriate if not exemplary mass behavior. Although he is still quite young, and despite the fact that his language is somewhat rudimentary, when we are at church together, I can clearly see that Ben is his own best advocate. And every single person who knows that Ben has autism also knows what individuals with autism are capable of. Self-advocacy is not only for those with fluid language skills. Rather, competence begets self-advocacy, and behavioral intervention is the path to that competence.
Every child deserves this chance to show others all that he or she is capable of; every child deserves to learn all he can learn; every child with autism deserves effective, behavioral intervention, and it is up to us parents to make sure our children with autism get what they deserve.

Footnotes

This paper is based on a presentation given at the conference Innovations in Autism Treatment and Applied Behavior Analysis in April 2009 at Caldwell College. Gratitude is extended to Kenneth and Sharon Reeve for their considerable help revising that presentation into this manuscript.
1Having a child with autism has taught me many things, perhaps the most important one being to express gratitude for those who have helped him. Children with autism are the proverbial children for whom it takes a village, our families need help more than most, and indeed I would not be committed to advocating for effective intervention had my son not received excellent behavioral intervention from so many generous behavior analysts, many of whom have also spent hours talking me through the finer points of behavioral interventions—thus, educating me, along with Ben. So, I would like to begin on a note of thanks to the many who have labored to help me understand the value of behavioral intervention. Any success I have in making a user-friendly case for effective, science-based intervention for children with autism, is due to the generosity of others. is essay is dedicated to the many behavior analysts who have helped me understand.
2 Editor's note: Please see Cortesi, Giannotti, Ivanenko, and Johnson (2010); and  for some evidence regarding behavioral interventions for sleep problems exhibited by children diagnosed with autism.
Action Editor: Gregory Hanley

References

  • Cortesi F, Giannotti F, Ivanenko A, Johnson K. Sleep in children with autistic spectrum disorder.Sleep Medicine. 2010;11:659–664. [PubMed]
  • Gay P. 1968, May 18. p. 160. Books, per ardua [Review of the book The Empty Fortress, by B. Bettelheim]. The New Yorker.
  • Helt M, Kelley E, Kinsbourne M, Pandey J, Boornstein H, Herbert M, et al. Can children with autism recover? If so, how. Neuropsychology Review. 2008;18:339–366. [PubMed]
  • Kodak T, Piazza C. C. Assessment and behavioral treatment of feeding and sleeping disorders in children with Autism Spectrum Disorders. Child and Adolescent Psychiatric Clinics of North America. 2008;17:887–905. [PubMed]
  • Lovaas O. I. Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology. 1987;55:3–9. [PubMed]
  • Maurice C. Let me hear your voice: A family's triumph over autism. New York: Random House; 1993.
  • McEachin J. J, Smith T, Lovaas O. I. Long-term outcome for children with autism who received early intensive behavioral treatment. American Journal on Mental Retardation. 1993;97:359–372. [PubMed]
  • Moser D. Screams, slaps & love: A surprising, shocking treatment helps far-gone mental cripples.Life Magazine. 1965. pp. 90–102.
  • Newport F. On Darwin's birthday, only 4 in 10 believe in evolution. 2009, February 11. Retrieved from http://www.gallup.com/poll/114544/darwin-birthday-believe-evolution.aspx.
  • Rogers S. J, Vismara L. A. Evidence-based comprehensive treatments for early autism. Journal of Clinical Child and Adolescent Psychology. 2008;31:8–38. [PMC free article] [PubMed]
  • Sinclair J. Don't mourn for us. Autism Network International newsletter. Our Voice. 1993;Vol. 1(3)Retrieved from http://www.autreat.com/dont_mourn.html.
  • Stillman W. Autism and the God connection: Redefining the autistic experience through extraordinary accounts of spiritual giftedness. Naperville, IL: Sourcebooks; 2006.

Articles from Behavior Analysis in Practice are provided here courtesy of Association for Behavior Analysis International

Friday, January 17, 2014

Sharing - Great Blog! Financial/Medical/Legal recommendations for Special Needs Parents

This is not my post - I'm sharing a post I read from another blog that I thought was wonderfully written.  I could replicate it, with effort, or I could just share, with credit, from the original source.  If you like the post, go to facebook and find the Autism Daddy community and click on like for more great posts :)

Here is the complete blog post, followed by a link to the original page:

Wednesday, January 11, 2012

6 Medical Insurance/ Legal/ Tax Things Every Special Needs Parent Should Do ASAP!...



Ok, first off I'm not a lawyer or a tax guy or a financial guy, but these are some things that we have done based on the advice of these types of experts.... I said “Special Needs Parents” because it probably applies to all special needs kids, but I’m writing this as a parent of an 8 year old boy with severe autism.  We are a family of 3 (mom, dad, son) and could be considered a middle class family and live in New York State.

For some of these things I'll try to find you some good links to give you some better background info cuz for some of them I'm not even entirely clear as to how we did it or what to do I just know it was important...

All this to say I'm no expert on any of this and I'm writing this in the most laymen’s terms ever...  If you are a lawyer or an expert and I've made any mistakes here, or oversimplified something PLEASE LET ME KNOW and I will correct it!  Also let me know if you have any other Internet links that explain these things better than I can.

Ok, here goes... In no particular order...

1) PREPARE YOUR WILLS
I don't care how young you are or how poor you are, all parents need to have a will in place so you can lay out exactly how you want things to play out and who you want to raise your kid(s) in the unlikely event that you (& your spouse) pass away.  This is even more important if you have special needs kids.  And perhaps even more important than the will, but kinda part of the will process is…

2) SET UP A SPECIAL NEEDS TRUST
This may be more important if your kid is severe.  Basically, after you and your spouse pass away instead of "willing" your assets to your special needs kid who may not be able to make choices/ decisions on their own behalf, you will it into a
"Special Needs Trust" in their name. And then you name some family member or friend who you trust as the trustee of the trust.  And they will be in charge of doling out funds to help your disabled child have a better life.

This is also very important for tax purposes because if your adult kid has a certain amount of monetary assets in his/her name they may be denied government services like SSI or Medicaid, but if the money is in a special needs trust it doesn't count against their assets.

Basically you work with a lawyer to get all the language iron clad and then you apply for a special tax id number thru the IRS.  It's basically like getting a separate Social Security Number for your kid.  You can open a bank account for your kid using this "trust number".

We haven't done the bank account thing yet, but our plan was to open an account under Kyle’s Special Needs Trust number, put a dollar in it for now, and then move the small amount of money I had put in a college savings account ;-( when he was an infant into this special needs trust account.  Then our wills stipulate that if both mom & dad die all our assets go into the special needs trust.


(I am not promoting or recommending this lawyer just recommending their FAQs)


3) APPLY FOR A MEDICAID WAIVER FOR YOUR SPECIAL NEEDS CHILD
Even if you think you make too much for your child to qualify for Medicaid you should look into it.  Here’s why…

"Medicaid will count family income and resources in determining eligibility. However, a person with a disability under age 21 may qualify regardless of parental income and resources for what is known as a "waiver." 
The name refers to the fact that Medicaid requirements regarding parental income are "waived" when the local Department of Social Services district is determining a disabled person's eligibility."

This is something that the wife and I stalled on for YEARS because it seemed like a very complicated process (paperwork, choose an agency & case worker, home visits, interviews, etc) and because we weren’t exactly sure what it was.  We finally were approved for Medicaid in late 2011.

We were happy because it came with a few hours per week or respite services, which is great and we sometimes use that for our “date nights” and other times as more official “therapy”…but then we discovered what else it gets us.

We now have a NY State Medicaid medical insurance card for Kyle and it acts as supplemental insurance and picks up a lot of what my insurance does not, including medicine co-pays!  Plus if we go to a doctor/dentist that accepts Medicaid the whole thing will be covered.  My insurance will pay what they normally pay (like 70% on dental) and the Medicaid picks up the rest!  This is HUGE!!

Based on his school’s recommendation Kyle is currently seeing a Behavior Specialist because of his breath holding issues.  He is going 2-3x per week.  We haven’t even seen a bill.  I looked it up on my insurance company’s website and he’s charging $250 a visit and as usual my insurance company is paying 70% on some, denying on others, etc.  But Medicaid is covering the rest.

This whole Medicaid Waiver thing and the types of services available can vary drastically from state to state and I’ve heard horror stories of people waiting YEARS to be accepted, but it’s something you should look into ASAP and get your name on the waiting list ASAP.




4) IF YOUR EMPLOYER OFFERS A MEDICAL FLEXIBLE SPENDING ACCOUNT, USE IT!

What is a medical flexible spending account (FSA)?  Here’s the Wikipedia page that explains it a lot better than I can but basically it’s a way to save money on your out of pocket medical expenses, things not normally covered by your insurance (dr visit co-pays, medicine co-pays, some over the counter drugs, some therapies, etc).

It won’t save you a TON of $ but it will save you some and EVERY PENNY COUNTS, right?

In true layman’s terms here’s how it works quoted from this cbsnews.com story…

“Say you're a couple, both working, earning a combined $100,000 a year. You spend $5,000 annually for out of pocket medical expenses for your kids. If you don't bother with one of these medical flex accounts, you earn your $100k, and let's estimate you pay 25% taxes on it. So now you're down to $75,000. Then you pay your $5,000 in medical bills - which leaves you with $70,000. 
Now, assume you do enroll in a medical flex account. So you set aside $5,000 for the medical costs. Your taxable income is now $95,000. Pay your 25% taxes on that, and you're at $71,250. You've just saved yourself $1,250. Which makes clipping coupons or harassing Verizon seem like small potatoes in comparison. 
Putting aside even $1,000 in a flexible spending account, whether it's for medical expenses, dependent care, or commuting costs, saves you $250 in the above example.”

Basically at the beginning of the year, you are pre-determining how much you think your out of pocket medical expenses will be.  Not just for your special needs kid(s), but for you and your whole family.  The max that you can put in is $5000.  And your employer is reducing your paycheck by $5000 a year so you are getting taxed on $5000 less per year.  So in the example above, the family’s salary was $100k (I know it’s high, but it’s just an example :-), but they are only getting taxed on $95k.  Then that $5000 sits in a FSA and every time you have an out of pocket medical expense you GET A RECEIPT and you submit the receipts and a tax free check is mailed to you.  Some FSA plans actually give you a debit card so if you pay with the debit card the funds are automatically deducted and you don’t need to submit receipts.

The only thing bad about FSA accounts is that it’s USE IT OR LOSE IT.  If you put $5000 in and at the end of the year you’ve only spent $4000 on out of pocket medical expenses you lose that $1000…

But I’ve been doing it for 5+ years and I’ve always put in the $5k maximum and fortunately or unfortunately I’ve always reached it.  Between all of Kyle’s dr & med co-pays and my wife going to a chiropractor it adds up quick.  Also we pay out of pocket for some occupational therapy and we get a medical receipt each month from the provider and what my regular insurance doesn’t cover gets covered thru my FSA.  

"Wait, you get your OT partially reimbursed thru your insurance company?"  Yes, which brings me to my next point.



5) ALWAYS ASSUME THAT YOUR MEDICAL INSURANCE COMPANY IS SCREWING YOU!
Everything that I’m about to write about on this one applies to my situation with my kid BEFORE he qualified for Medicaid.  This all might change if we use “Medicaid Providers” moving forward.  Also I keep seeing these new insurance laws being signed in state by state by I have yet to see this change anything in our world.  Got it?  Ok disclaimers over, here goes…

Always assume that your medical insurance company is screwing you.  We always heard stories of parents getting their insurance companies to cover OT & Speech.  And about 3-4 years back when Kyle’s school district denied us after school services (that’s a whole other upcoming blog post) we decided to explore this.

I spoke to some people and found a few websites that gave me some guidance.  Basically you start out by getting your kid’s pediatrician (not the DAN doctor, but that guy/gal you see for the sniffles) to write you out a prescription for speech & OT and on it he can specify 3 x 30, etc.

But the key is what codes does he put on the scrip?  There was one year when my insurance company said they wouldn’t cover speech/ot for autism because autism is a neurological condition and because he didn’t have speech at one time in his life and lose it (like a stroke victim).  So the “autism codes” wouldn’t work, but someone told me to try the “verbal apraxia codes”.  So I did the research myself found those codes myself.   Here's a wiki link to some ICD-9 codes and here's a wiki link to the CPT codes.  Then I told my pediatrician what they were and he put them on the scrip.  Then we found a center that did speech/ot and told them what codes to use.  And they would give us an medical invoice with those codes on it.

Now I should take a step back and say that this wasn’t easy when it was going on.   I was paying COMPLETELY out of pocket for speech and OT for MONTHS waiting, hoping, praying that I'd get some reimbursement while I worked all this out and it was extremely stressful.  I was on the phone with my insurance company every couple of weeks.  I was getting the HR person from my company involved.  Trying this code and that code, denied, denied, denied and in late 2009 they magically took the Verbal Apraxia code.  So I resubmitted all my claims with that code.  And I finally starting getting some money back…  Of course all this was considered “out of network” so I was only reimbursed 70%, but still I was happy.

Then in 2010 they stopped taking that code and starting denying it again  More phone calls, more stress, more HR involvement, more denied, denied, denied,  and we find out, "oh you should be using the Autism codes." Last year, no good – This year, good.  WTF?

Here's another secret that SOME insurance companies don't tell you. If you go to one doctor and he recommends you see a specialist and that specialist is not covers by your insurance and is considered "out of network", but that specialist is the only doctor that has that speciality within a 50 mile radius of your home then they have to cover it as an in network doctor.

Kyle's pediatrician recommended he see a pediatric pulmonologist recently. He was out of network, but because he was the only PEDIATRIC pulmonologist within a 50 mile radius they had to cover it.

The general rule is with anything with your medical insurance, not just for your special needs kid but for you and your whole family, just assume that your insurance company is trying to screw you. But keep calling and keep submitting and do your own research. 


6) ITEMIZE YOUR MEDICAL EXPENSES ON YOUR TAX RETURN
Ok, this gets kinda complicated but it's important.  You can itemize all your medical expenses for your whole family (that were not previously reimbursed thru your flex spending account) on your tax return IF your expenses exceed 7.5% of your Adjusted Gross Income (AGI).  So for that example above of the husband & wife who earned $100,000, if their medical expenses exceeded $7500 for the year (100,000 x 7.5%) then they could itemize them and deduct anything over that $7500.  So if they had $10,000 in medical expenses they could itemize and deduct $2500 (10,000 - 7500 = 2500).  

So what can you itemize and deduct?   Well here's what the wikipedia page lists...

  • Capital expenditures that are advised by a physician, where the facility is used primarily by the patient alone and the expense is reasonable (i.e. a swimming pool for someone with degenerative spinal disorder OR an elevator for someone with heart disease)
  • Payments to doctors, dentists, surgeons, chiropractors, psychologists, counselors, physical therapists, osteopaths, podiatrists, home health care nurses, cost of care for chronic cognitive impairment
  • Premiums for medical insurance (but not if paid by another, or with pre-tax money)
  • Premiums for qualifying long-term-care insurance, depending on the taxpayer's age
  • Payments for prescription drugs and insulin
  • Payments for devices needed to treat or compensate for a medical condition (crutches, wheelchairs, prescription eyeglasses, hearing aids)
  • Mileage for travel to and from doctors and medical treatment
  • Necessary travel expenses

So what does this mean for parents of special needs kids?  What am I not thinking of?  Well  here's some BIG TICKET expenses that you may not realize MAY be tax deductible pulled from a great article at the Autism Support Network website.


Your physical or speech therapist may recommend certain activities, such as music lessons, gymnastics, horseback riding, swimming, or other sports activities as an adjunct to the therapy. These expenses, as well as travel to and from these activities are also deductible. Be sure to ask your therapist or doctor to write an updated note recommending the suggested activity for your tax files. 

In addition, you may choose to attend workshops or informative seminars or conferences about your child’s disability and treatment. The cost of these conferences as well as travel and lodging costs ($50 per night per person) may be deductible. 

If your child attends a special school, tuition costs, tutoring and educational supplies (such as software, books and videos as learning tools) which designed to educate special needs children may be deductible. Sign language instruction, speech therapy, remedial reading instruction and related books and materials in addition to transportation including parking and tolls are deductible. 

The cost of diagnostic evaluations including testing by a speech-language pathologist, psychologist, neurologist, or other person with professional qualifications, may be deductible. 

The cost of a patient care attendant (such as a babysitter) may also be deductible, so if you must hire someone to stay with your older child or adult child while you are out keep the receipts for these expenses.  

A capital expenditure, such as a home improvement or upgrade to make a home or auto accessible, qualifies as a medical expense if it has as its primary purpose the medical care of the disabled child but only to the extent that it exceeds any increase in property value. Therefore, as an example, the partial cost of a home generator, if your child has an underlying health condition, (such as asthma) may be considered a qualified medical expense. 

Over-the-counter medications that can be purchased without a doctor's prescription, such as aspirin, are not deductible. Nor is the cost of nutritional or herbal supplements, vitamins, and natural medicines are not deductible as medical expenses unless they can be obtained legally only with a doctor's prescription. However, the cost of special foods, such as gluten free products may be deductible to the extent the cost exceeds regular food

Did you read that last sentence?!  I didn't even know that!  So save your receipts and at the end of the year add it up and see if it's over 7.5% of your adjusted gross income cuz EVERY PENNY COUNTS!

----------------------------------------------------------------

So that's it!  That's all I got!  I hope you find this helpful... and as always I welcome and look forward to your feedback and comments...but PLEASE let's not turn this into one of these posts where people comment and complain about how did I get Medicaid for my son when I make X amount of money, or why do I get respite hours?  This is the hand I've been dealt.  And  the wife and I did ALOT of homework over the years...And we are trying to make the most of it.  Alot of what I've written about varies drastically from state to state and NY state has some of the best services available... and we pay the highest taxes so that seems kinda fair.

So please take what I've written as my story, my experience that I'm jotting down to see if it can be helpful to others.  And as I said in the beginning please let me know if I've made any mistakes or if you know of any additional links that folks might find helpful.

THANKS!!
Source: http://autism-daddy.blogspot.com/2012/01/6-financial-medical-legal-things-every.html