I have been hearing so much about compassionate care lately. It seems to be a “new” trend in the field. I see presentations and keynotes about it. Everyone is talking about it, posting about it. And yet as a Behavior Analyst working with individuals with autism for almost 35 years, I find myself confused by it. Why? Because I came to the field because I love working in the field and I often can be heard saying “I like people with autism better than people who do not have autism”.
Ever since I was young, I wanted a profession in which I could help others. I happened to end up on a path with individuals with autism and their families. I couldn’t love it more. I feel like I have made a difference in many lives through the years, and I still hear from families that I worked with many years ago and I’m proud to think that I made a difference even if in some small way to make their lives better, to help them to live a better life.
When I am looking to hire new staff to support people with autism, I always say the most important quality that I am looking for is the caring. I really believe the rest can be taught but you cannot teach someone to care. So, this idea of caring permeates all that I do and every decision that I make.
The agency where I have worked for 30 years has always been very parent centered, and person centered, and I have embraced that fully. I believe that we are here to help support people with autism on their path through life, but we must be able to see how to do that in a way that truly helps them and that they and or their family want. I always think about quality of life and the future for the people we support. I have observed professionals get into battles with parents and make decisions that are best for the staff and not the participants and sometimes it is just about control. That is not why we are here, it is not a game, and we do not need to win. We are here to support people with autism to have the best life they can have. Parents of individuals with autism have so much knowledge and it is important to listen to what they have to say and what they are trying to accomplish.
One exercise that can be very helpful is to ask a parent to think about where they see their child in 5 years or 10 years and then draft some goals around that to work on a path towards that end. It helps to see where people’s mindsets are. If the child can provide input, then of course we want to know that as well. Sometimes the child cannot tell us, but they show us through their behavior. I had a family I was consulting with once and the student was in preschool. I’ll call him John. John was going under the table during lessons and running out of the classroom. The preschool was starting to take steps to discharging him from the program. I spoke with the mom and said his behavior couldn’t be sending a clearer message that he does not want to be there. The more I learned I knew that he was not being challenged in the setting. We found a new preschool that used a Montessori model and allowed him to learn at his own pace and he thrived there. The behavior was gone. What a difference a setting, instructors and a different approach can make. I often think about students like John, and I wonder where they might be if we had not found a way to turn things around.
I have so many stories like this about children with autism who did so well with the use of teaching methods based in applied behavior analysis and a focus on increasing skills to prevent challenging behavior. I know of students who are now adults living their lives with family and are working and enjoying their lives. But there are other success stories, I know of many children who required intensive staffing or were receiving services at home because the school could not support them with the challenging behavior they had. And now they are in a program and are not exhibiting those behaviors.
So, to me, it is because I care that I want to help and support an individual with autism behaviorally, socially, emotionally, academically…
I have been thinking a lot about why so much talk about compassionate care recently and I do have some theories. I think that the surge in for profit organizations has made an impact in our field. It is wonderful that the number of RBT (registered behavior technicians) is increasing astronomically and that more and more people are learning about behavior analysis and becoming BCBA (board certified behavior analysts). However, the way in which services are delivered in a for-profit space vs. a non-profit space may be one of the reasons that we are so concerned with making sure there is compassion in our field.
One example would be conducting an assessment while working for a for-profit agency (funded by insurance) in which you are only allotted a certain number of hours to complete the assessment. This leads to less-than-optimal conditions, and it is likely that the assessment will not be as comprehensive as it should be and may you even need to cut the parent interview portion short due to time constraints. Another example is back in the day when I first began providing services, I would have a 2 hour session with the student and sometimes parents or siblings would participate and then after the session I would always stay and debrief the parent a bit or answer whatever questions they had or help them with an issue that might have arisen during the week. I found myself talking often for maybe 45 minutes after my session. This was not billable time I just thought it was so important that I never even thought about billing. I thought about the child and the family. Now many of those services are provided through the insurance companies and not only have people been “trained” just focus on their billable hours but even if they wanted to stay and talk, they often are stretched so thin and have so many cases and not enough time in the week to be able to stay and take that time with the parents. This of course is a disservice to everyone involved, the child, the parents and the behavior analyst who would be learning so much during those debriefs.
Another consequence of all of this is that I am seeing many behavior analysts who are overwhelmed, stressed and burning out of the field. There is an exodus that is underway that will only make our supply and demand issue in the field worsen. Social media such as Facebook has groups for behavior analysts to join to interact about the profession. I have joined these groups but sadly I am seeing more and more posts that are saying that they are looking for a new career. This is a shame because this is a new trend. There have always been instances where maybe someone thought this was the field for them and they quickly realized it was not. That’s okay, it is to be expected. This is different, these people are spending years completing coursework and passing an exam and completing CEUs and then they are fully immersed into the field only to feel overwhelmed and exhausted and looking for another way to use their degree. In the posts that I am seeing the BCBAs are working for agencies using a caseload model (funded by insurance) and the professionals are feeling the burden of the billable hours, the workload and the pressure placed upon them. Some say they must work 60 hours a week just to get their billable hours completed for the week. Remember their travel time is not billable. This is not sustainable and I would imagine may produce a behavior analyst who is likely very caring but also very frustrated.
Often new behavior analysts are drawn to these agencies because they pay well. Others on the FB page often recommend going to a non-profit organization, taking a position in a school that uses teaching methods based in ABA.
I don’t have the answers today but I it is an area I plan to focus on as I believe it is crucial. So back to the compassionate care. Yes, it is all about the caring and it should be first and foremost. However, in this new world of service provision we will need to find ways to support the behavior analysts so that they have the time and ability to express their caring as it is I hope the reason they chose the profession.
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