Trying To Get ABA Therapy For Autism Teaching

I met with my son’s case manager. She is still working on getting my son a communication device. Apparently, his former case manage left things a mess. She quit and his new one is trying to fix everything. His new case manager isn’t familiar with communication devices or Boardmaker.

A couple years ago, we were able to get a touch screen and Boardmaker. His CAP services/Medicaid paid for them. The company that is responsible for approving the communication device we are trying to get, asked her why does he need it when he just got a communication device. I explained to her that he didn’t get a communication device. He received software and a touch screen that can be used on the computer. He needs a communication device that he can take anywhere.

She understood after I explained. Then I brought up ABA. I firmly believe that my son would benefit from ABA therapy. I’ve tried and tried to get it, but either there were no providers in the area or insurance wouldn’t pay. I asked her to check into it. There are providers in the area, but I don’t know if CAP or my son’s insurance will pay for it. If my son was 3 years old, I would be able to get ABA for him with no problem. Only, he’s not. He’s 11. When he was 3, he wasn’t even diagnosed ASD. He was diagnosed with “Global Delays.” Globally delayed is all we heard, until he was 5 years old. That was when he was diagnosed with Autism. Of course, the school had to be convinced. That took a lot of doing.

From everything I have read, ABA can benefit all ages. It is believed that the younger the child, the more ABA can benefit him. That is great, but please don’t forget about my son, just because he isn’t the age you think he should be to receive ABA therapy. He is still learning. His OT and I were working with him on throwing a ball the other day. His biggest problem with that is letting go of the ball. We actually got him to do that. We were so proud of him.

His case manager said she will call me Friday and let me know what she found out. I hope it’s good news and not bad. I really think he needs this.

A Label Doesn't Change The Child

Jean Myles, www.MommyToTwoBoys.blogspot.com, shares her story with me and my readers via an email interview. Thank you, Jean.

1. When was your three year old diagnosed?


Jaylen was diagnosed at 18 months.


2. Receiving a diagnosis at such a young age is great. Are you receiving Early Intervention services?


At 18 months Jaylen was getting a specialist to the house once a week and we quickly realized it wasn't enough. So he began ABA - DTT five days a week for an hour and a half. Then when he turned 3 he started an integrated PreK program run by special ed certified teachers where he also receives Speech, OT, and PT.


3. If so, can you explain what they are to my readers?


Oops, just did that above :)


4. Would you mind telling my readers a little bit about your child?


Jaylen was completely non verbal until 2, but now has a vast vocabulary, almost above age level. He still has some issues answering questions, and has instant and delayed echolalia at times.

He is very hyperactive, especially when there is a change in routine or he is overstimulated. He used to have very little eye contact and rarely responded to his name, but now does both more often than not.

Jaylen has emotional problems, mostly anxiety and cries often when frustrated or not sure of something. He also has very little empathy and can not "read" people. He used to have up to ten 30 minute or longer tantrums per day, but know has only 1 or 2 a week.

Sensory issues have become worse over time. He likes to squeeze into tight places, use a weighted blanket, and carry heavy objects.

He has difficulty playing with toys appropriately and to this point has no idea how to interact with other children other than to chase them and repeat what they say. However, he is getting good at turn taking games at home.

Jaylen is very bright, some of his teachers have even mentioned the term savant to me. Numbers, shapes, and letters are his favorite thing and he can easily become consumed in any activity involving them.


5. What has been the biggest help for you in obtaining information about autism, therapies and treatments?


The biggest help for us was his first placement. His coordinator, teachers, and therapists at his ABA school were just amazing. They were so involved in Jaylen's development. Since leaving that placement I have found several websites and mom's groups online that really help. A few books have also been helpful in reading about treatments and tips.


6. What has been your family's reaction to your child being diagnosed with autism?


The first day we were told something wrong was very tough to hear. Being a former teacher though, my husband and I both knew something wasn't right. But hearing it from someone else was hard to handle. The label didn't change him though. He is still the same kid, our same little boy, just now we know what is wrong and work hard to help him the best we can.

Providing ABA Therapy For Your Child

ABA Therapy is one of the most recommended forms of therapy for a child with autism. I interviewed Kelley Prince, Board Certified Behavior Analyst, and asked her several questions about ABA Therapy. Here are the questions and answers:


1. Can you introduce yourself to my readers and explain what ABA therapy is?
My name is Kelley Prince. I am a Board Certified Behavior Analyst and the President of Behavioral Consulting of Tampa Bay, Inc. (http://www.bcotb.com). I graduated from the University of South Florida with a bachelor’s degree in Psychology and a master’s degree in Applied Behavior Analysis. I have been working with children with autism and related disorders for more than 11 years. Currently, I have 2 clinic locations in the Tampa Bay area that provide clinic-based, school-based and home-based behavior intervention programs for children with special needs, or for children who engage in problem behavior.

Applied Behavior Analysis (ABA) is the science of human behavior. It involves applying behavioral principles and techniques to improve socially significant behavior. ABA therapy is two-fold: interventions are used to increase behaviors that are not occurring at an appropriate rate (i.e. the individual has a skill deficit) or interventions are used to decrease behavior that is occurring too frequently (i.e. problem behavior.) ABA therapy is the only therapy with more than 30 years of research and statistics proving it’s effectiveness for children diagnosed on the autism spectrum as well as, as an intervention for a variety of populations and behaviors.

2. What can parents do if ABA therapy is not available where they live?
If ABA therapy is not available to a family in their area, they may contact an out-of-town Board Certified Behavior Analyst (BCBA) who can provide consultation, assessments, and staff training on a limited or perhaps monthly basis. Most families in this situation contact their local university to find students who are interested in receiving ABA training and who are available to work directly with their child under the supervision of a BCBA. The number of students needed depends on the number of therapy hours the child receives each week. Once students are secured, the BCBA comes to the home for 3-4 days and completes an initial assessment of the child, develops program goals and trains the private therapists. The BCBA then provides supervision and consults with the family and therapists on a weekly basis via phone calls, emails, and videos. Face-to-face consultations occur on a limited basis and involve observing the therapists implementing the program goals and instituting changes to the goals based on the child’s performance. Additional staff training may also take place depending on new goals as they are developed.

3. What about the cost of providing ABA therapy for your child?  Do you know of any grants available to parents to help cover the cost?

The overall cost of ABA therapy is dependant on the total number of hours per week the child receives the therapy. The average rate of therapy is between $40.00 and $60.00 an hour, and depending on a child’s individual needs, many are enrolled for 10 to 40 hours of therapy each week. There may also be additional costs for services provided by the therapy supervisor, or BCBA. The child’s initial assessment, the development of a child’s specific program goals as well as the monthly supervision of the therapists may be a separate, initial or on-going charge that can range from $60-$150 an hour depending on the BCBA’s experience level. Always check with the BCBA or clinic to verify any additional expenses and what they entail.

In the Tampa Bay area, funding sources such as the ASO Grant are available to offset the costs of ABA therapy. Otherwise, if a family resides in Florida, and the child is in the Medicaid Waiver program, behavioral services are, in fact, covered.

Additionally, the “Window of Opportunity Act” was passed last year by Florida Governor Charlie Crist and requires insurance companies (within the state of Florida) to cover up to $36,000 of ABA therapy for every child who has received a diagnosis on the Autism Spectrum Disorder including ASD, PDD, and Asperger’s. There are limitations and stipulations to this legislation, but it has already helped several families in our area receive ABA therapy, who otherwise may not have been able to afford such treatment, at no out-of-pocket cost to them.
 

4. Is there a cut-off age for ABA therapy?  Is there an age that introducing ABA therapy with an autistic child will not be helpful?

There is not a cut-off age for ABA therapy as it helps individuals of all ages, including older adults. However, for the most effective therapy, early intervention is key. I recommend children in need of ABA therapy begin services before the age of 5 to have the best possible outcome.
 

5. How would a parent go about finding a qualified provider of ABA therapy services?

A parent looking for a qualified provider of ABA therapy services should ask other parents who have children with autism as well as their pediatricians, neurologists or other therapy providers such as speech or occupational therapists. If parents do not have access to other parents or professionals who are familiar with local BCBA’s, their best bet would be to search online using the Behavior Analyst Certification Board Registry at www.bacb.com.

6. Can parents be trained to provide this therapy if there is no one in their area to hire?  If so, what would that involve?

Parents can be trained to provide this therapy and even if the child is presently receiving services, it may be a good idea to help supplement the child’s time at home. However, if a provider is not located within a family’s particular area, the parent should contact a qualified BCBA to discuss home therapy. The BCBA will need to travel to the home to conduct a thorough assessment and analysis of the child, create program goals suited to the child’s needs and then provide the parent training – similar to the process of a BCBA training private therapists. (See response in question 2 above)

NY Governor Responds to Autism Questions

It took a while, but I finally received a response from the emails I sent to different Governors around the country. Unfortunately, Gov. David A. Patterson, NY, is not the one who replied. It was Ellen J. Anderson, M.S., Director, Center for Community Health, State of New York, Department of Health. It is a long, three page response, with answers to each of my questions.

You might want to go back and read the last post I did about emailing politicians for their opinions on autism. Here is the first question that I asked.

1. When the CDC announced the new autism rates, 1 in 110 children are diagnosed with autism, what were your first thoughts?

The response:
“During the past decade, there has been growing national awareness and concern about the increasing prevalence of ASD among young children. The recent findings from the CDC Autism Surveillance Network may be the result of a true increase in prevalence of ASD, improvements in the early identification and diagnosis of, improved reporting of diagnoses, or likely a combination of all of these factors.”

You can correct me if you think I am wrong, but that doesn’t read like an answer to my question. To me, it concedes that there is an increase in children being diagnosed, but that it may be because professionals are getting better at diagnosing. I wanted Gov. Patterson’s opinion and I received a non-answer from Ms. Anderson.

I’m not going to post the whole letter here, it is too long. I do want to point out information provided in the answer to the second question:

2. Services for children with autism are limited and difficult to receive. Most are limited to speech, occupational and speech therapy, yet hardly ever enough of these services to make a big impact for our children. Services like ABA and Floortime therapy are usually not available for our children unless we, the parents, pay for them ourselves. Children that receive at least 20 to 25 hours a week of specialized therapy make more progress than those that do not. What do you intend to do to make government paid specialized therapy services available for our children?

“Based on the available scientific evidence, the Autism/Pervasive Developmental Disorders CPG recommends behavioral intervention program for young children with autism. The NYS DOH will be completing a review and update of this guideline based on scientific research completed during the past decade.

The New York State Early Intervention Program currently provides reimbursement for ABA and, through clinical practice guideline, encourages families and providers to use ABA as the cornerstone of individualized family service plans for children with autism.”

Since she says it is through Early Intervention, I am assuming it is available for children ages birth through age three. These are the ages that the Early Intervention Program services. What about older chidren that have not received ABA and would benefit from it? I think it is great that NY is doing this, but I have seen that children older than the age of three are limited in the help they need.

My son would greatly benefit from ABA, but it is not a reimbursable therapy available for children in my state. At least NY is doing something. I am happy about that. I also encourage families in NY to look into this if they are not currently receiving ABA for their young child.

I would still like to see more responses from other states. I am disappointed that Gov. Patterson did not answer the first question, but am satisfied with Ms. Anderson’s answers to the other questions. She provided some useful information, especially on the ABA therapy available for young children. I hope that NY can be an example for other states and I hope that they will look into the fact that children over the age of three need help, too.