Cathy Pratt, PhD, BCBA-D, Director, Indiana Resource Center for Autism
Angela Tomlin, PhD, HSPP, Professor and Co-Chief, Developmental Medicine, Department of Pediatrics, IU School of Medicine
Michele Trivedi, MHA, Parent, Manager, The Arc of Indiana’s Insurance Advocacy Resource Center
Susan Wilczynski, PhD, BCBA-D, Plassman Family Distinguished Professor of Special Education and Applied Behavior Analysis, Ball State University
Parents seeking ABA for their child often have questions about locating and choosing ABA programs and providers that are a good fit for their family. ABA providers and centers are multiplying across the state of Indiana. Companies from outside Indiana are coming in and setting up clinics. Some of these companies are owned by private equity firms. This type of private investor firm faces little regulation or oversight. Some of their policies and practices have led to negative outcomes for people with autism and their families. See the Private Equity Stakeholder Project website. https://pestakeholder.org/issues/healthcare/ PESP is a non-profit, private equity watchdog group that reports on private equity’s effects on several industries, including healthcare.
In some areas of the state, the options are fewer or harder to access. In areas that offer many options, parents often have a difficult time choosing the right center/provider for their child and family. Because these centers/providers use somewhat different approaches, and interact with children and families in different ways, it may be hard to know which center or provider will best meet the child’s and family’s needs. Below are some frequent questions and answers to help you get started.
- What exactly is Applied Behavior Analysis (ABA)?
It is sometimes confusing to know exactly what someone means when they say ABA. ABA usually refers to an individual program of behavioral interventions that help a person develop desired skills and reduce or replace less desired skills. It is not a single or one size fits all program. Programs should be individualized to meet your child’s needs. ABA can be used for varying lengths of time (40 hours a week is inappropriate for some children). ABA includes strategies such as positive reinforcement, shaping, chaining, and many other techniques. It can occur in any setting, including home, community, or clinic. Many ABA centers/programs do intensive early intervention ABA which includes one-on-one systematic, and data driven instruction to decrease problematic behaviors and teach alternative skills.
- Who will perform “ABA” with your child?
There will be two levels of staff involved. First, be sure that someone on their staff is credentialed in ABA. These are called Board Certified Behavior Analysts (BCBA). And, because any credential only shows that the professional has passed a test and has met a minimum standard of supervised practical training, find out about their experience with children like yours. The BCBA should be always on the premise. Question whether the program follows the Behavior Analyst Certification Board (BACB) Practice Guidelines related to BCBA supervision recommendations, and caseload size. BACB Guidelines note that oversight of 6-12 clients is the average, with a higher range possible based on circumstances. For more information on BCBAs and practice guidelines, visit the website for the Behavior Analyst Certification Board (https://www.bacb.com/).
Most direct services are provided by Registered Behavior Technicians (RBT). They are the front-line staff who conduct the programs developed by the BCBA and with oversight from the BCBA.
- What are the training procedures of the clinic/provider?
Professional development should be regular and ongoing. The certification board (BACB) has requirements that people obtain ongoing training to maintain certification. Many centers/providers also deliver training to family members. Indiana just recently passed a licensing bill that has not been implemented yet. And some ABA providers pursue Behavioral Health Center of Excellence (BHCOE) Accreditation (https://www.bhcoe.org/) or credentialing through the Autism Quality Commission (ACQ Home - Autism Commission on Quality (ACQ) and Council of Autism Service Providers | CASP (casproviders.org)
- What is agency policy for implementing behavior plans?
Some ABA providers use excessive punitive or punishment approaches that are considered restrictive or reactive interventions (e.g., time-out procedures, restraint, etc.). These strategies are discouraged because they can have negative side effects. Instead, positive reinforcement practices should be primarily used. Ask about the approval process for behavior plans that have restrictive interventions in the event of extreme behaviors. Do parents participate in determining if the behavior is considered extreme? Is there an external review process (e.g., advisory board, etc.)? How are you informed of the behavior plan? What policies are in place for preventing abuse? Does the center/provider have policies in place? Ask to see relevant policies.
- How are data collected and shared?
ABA should always include data collection for the purpose of making program decisions to help people live better lives. All providers and centers should be able to regularly provide you with data in a format that shows whether your child is improving. They should explain how to interpret the data in a way that makes sense to you. Some professionals become so accustomed to using data that they hand you reams of data that simply do not make sense to anyone. Ask questions: How does your center assess if progress is being made? Can I see examples of how this is done at your center?
Once your child is in a program, you should have regularly scheduled meetings with your child’s BCBA or supervising provider to review progress, make updates to the program, and provide you with the skills to help maintain and generalize what your child has learned in the home.
- How frequently are parents allowed to observe the child in therapy?
Although an agency/provider may have rules explaining how to schedule an observation, the ability or inability to easily access your child at any time may be something worth considering. Also, if at any time you notice an RBT, BCBA, or any other provider interact with your child in a way that makes you uncomfortable, you have every right to stop the procedure. You can also ask for more information about why the procedure is in place, including the potential harm and good of the procedure, and about potential alternative procedures.
- Does the center conduct background checks on all employees?
Your child is precious, and you need to know that they are in safe hands. Background checks are customary practice for most providers. If you hire your own front-line therapist or are bringing a provider into your home, make sure that a background check is completed.
- How long will my child receive ABA?
The answer differs for each child. Intensive ABA programming should not be for life. There should be a transition plan to move the child out of therapy and into more natural settings (e.g., school, community). How fast this happens will vary based on your child’s needs and the supports available in natural settings.
- What should the treatment plan include?
Make sure your provider addresses all aspects of your child’s ASD, and that their beliefs match your beliefs about your child. Although ABA providers hold many core beliefs in common, you will find that they have differing beliefs and philosophies. For example, ask how the provider thinks about issues including connections between sensory and medical conditions and behavior, or the use of visual supports or augmentative communication systems. Do they have a speech therapist or occupational therapist on staff or available? Do they see your child, or do they just see behaviors to be changed?
Be prepared to make a list of skills that you and your family want your child to do. In the plan developed for your child, skills should be taught that are valued by you (e.g., communication, toilet training, eating at a table, playing with brothers and sisters) and that can be used now and in the future. Your child’s preferences for skills are also important, particularly as they can communicate their desires.
- How much will it cost?
ABA providers and centers charge different rates. Costs will vary greatly and there are no standard fees. Medicaid is working on standard fees, private insurers and third-party administrators have standard fees. Sometimes these standard fees are below the cost of providing the treatment, so it forces providers to cost shift to higher paying plans. Please do not assume more expensive programs or providers necessarily provide better services. Make sure you ask about costs and funding options of various providers and centers before you make any decisions. What payment options other than private insurance are available (e.g., Medicaid, Children’s Special Health Care Services)? Ask if the program can help you apply for these other options. Be sure you are aware of possible co-pays, co-insurance, and deductibles. Check with other families to make sure good and ethical business practices are being followed, and to determine costs charged by various centers or providers.
There is no ABA magic wand. It takes a lot of work by many people (including you and your child) to help your child develop skills that lead to a happy, safe, and healthy life. So be very careful of grandiose promises about unrealistic outcomes. Providers who promise instant cures should be questioned. In fact, the goal should be to support your child so they can learn to make their own decisions about how to live their lives as opposed to “curing autism.”
None of us can say with certainty what a child will be able to do in the future. Most children will make progress when provided with effective intervention and support, but each child will progress at a different pace. Many factors may affect progress. Factors like your child’s health, behavioral challenges, quality of program, and how challenging it is for them to carry over their skills to important settings (like your home or in the community) all influence how quickly progress is made. Any provider or center that promises your child will be “just like a child without ASD” in a few years is making promises they cannot keep and asking your child to hide a valuable part of themselves from the world.
All service providers are now being listed on FINDER. You can search for ABA centers by location, payment type, etc.
For those with disabilities and their families, trying to navigate a complex web of services, programs, and other disability-related community resources can be daunting. FINDER provides 24/7 access to community services, is easy to use, and supports first-time users with a step-by-step guide. For more experienced users, it has advanced search features. Regardless of how information is located, search results are immediately available, and can be saved for future use and shared.
Pratt, C., Tomlin, A., Trivedi, M., & Wilczynski S. (2023). Where and how to find an applied behavior analysis (ABA) provider or center. https://www.iidc.indiana.edu/irca/articles/where-and-how-to-find-an-aba-provider-or-center.html.