So you’ve gotten through the diagnostic evaluation and survived. You’ve been given your resource guide, your First 100 Days kit, and an abundance of online support and education resources. You may have been told that Applied Behavior Analysis (ABA) is one of the few evidence-based treatments for autism and that Medicaid and other insurance companies are now covering ABA for children with autism, so consider starting a home program to augment the services received in school.
So where does a parent begin?
My experience as a parent of a child who receives ABA services is that it isn’t as easy as making a phone call or two. There’s a learning curve in understanding what this therapy is, how it might benefit your child, how to access it, and how to live with it. Times have changed a great deal in the thirteen years since my son was diagnosed at age 3. At that time there was no insurance coverage for ABA or any other kind of therapy in the home, providers were scarce, and it was hard to know how qualified they were.
With the advent of a BCBA (Board Certified Behavior Analyst) certification program developed by the Behavior Analyst Certification Board in 1998, consumers can feel reassured that they have a standard by which practitioners of ABA are held.
Do Your Homework
Learn more about ABA and the certification program. It’s important to be familiar with the basics of the science of behavior analysis and with the different applications of its use. For example, ABA can be used to teach skills (what is commonly known as Discrete Trial Training (DTT))and also to address challenging behavior. Not all ABA providers are skilled in the application to address disruptive behavior so it is important for parents to be clear about what they need help with for their child.
As with all treatments, the next step is to check with your insurance carrier to see if ABA is a covered service. Each has its own process for obtaining services and it can be confusing as this is new territory for them. Follow their process and ask for guidance along the way. They will have their list of contracted ABA providers. Be prepared to be put on a waiting list as the demand is high.
Understand What Having an In-Home Program Means
The way that most ABA agencies operate is that a child is assigned a certified program manager/behavioral consultant/specialist/supervisor (different terms are used by agencies) who assesses your child’s needs, develops and oversees the program. Behavior techs or aides (different terms are used for the staff who work in your home) are the ones who work in your home with you and your child in the implementation of the program. Some agencies provide their own trained behavior techs while others do not and parents must find their own.
It is an adjustment having people in your home and figuring out your relationship with them. It is an unusual and sensitive one by definition. There is perhaps no other relationship quite like this where someone has close access to your child as well as to siblings, other relatives and to your entire home, including parts of the home considered personal and private like bedrooms and bathrooms.
While staff are employees of the agency you are working with, you are their direct contact in your home and it is your responsibility to be an active participant in your child’s program. You will interview prospective staff and decide if you think that it is a good fit for your child and your family. You will also give feedback on the job they are doing and in determining the effectiveness of their work.
Prepare for the Interview
You have done the necessary research and you now know that the practitioners have the requisite certifications. Whether the agency provides line staff or you do your own hiring, you will be the one to train on the specifics of your home and your child.
What questions should you ask? What qualities should you look for? The following is a list of questions I have used in my own interviews.
- Have you worked with primarily younger or older children?
- Was your experience in the home, school, community or combination?
- Did you work on skill acquisition or challenging behavior or both?
- Are there any behaviors that you feel you cannot handle or work with?
- How many families are you currently working with?
- What is your availability? Be specific and firm with what you need. Lots of staff work evening and early morning shifts today so go with what you really need – not what is convenient to them.
- How do you view your relationship with the rest of the family? Siblings? Parents?
- Do you have a cell phone and email? What is the best way to reach you?
- How will you keep me updated on my child’s progress and needs?
- If there are parts of your home that are off limits to your child and/or staff, make sure you say this. Keep in mind that boundaries will blur as the program progresses to include the parts that your child naturally uses, i.e. bathrooms, bedrooms, dining area and play areas. I have returned home often to find my son and aide in my bedroom or my personal bathroom. If it is an area that he is allowed in without the in-home support then it naturally follows that he may wander in there when I am not there.
- Emergency preparation – how do you handle unforeseen problems? Can you call on colleagues or supervisors for back-up support?
- Privacy: How will you assure that my family’s identity and information are respected and protected?
- Religion/Culture: How will you make sure that my family’s religious preferences and culture are respected and adhered to?
- Do you have any local references of parents that I can call?
Once you have conducted your interviews, I strongly advise contacting references. In that conversation you should determine whether family is happy with service provided and why. How long has the family worked with them and what have they been working on. You should try to compare apples to apples, younger children to younger, teen to teen, etc. You should also ask if there have been any issues or problems in the home.
We hope this primer on starting an in-home ABA program is helpful. Parents, what other words of wisdom mighty you offer for parents new to this? Share your ideas with us!