Discussing software that helps track progress after an autism diagnosis

Contemporary Pediatrics:

Can you explain what types of software are helping families after their child has been diagnosed with autism?

Lauren Lanzon, MSW, MA, BCBA:

Software and technology have come a long way since I first started in the field about 10 years ago. Back then, paper and pen data collection and graphing through Microsoft Excel was more the standard for Applied Behavior Analysis (ABA). Now, platforms like CentralReach are able to do all of this and more through their system.

This allows us to streamline multiple processes, and now, with CR Care Coordinator, even parent education and training can take place through an online system. What’s so helpful about this is that parents can access specific ABA training and learn how to potentially manage behaviors, teach skills, and navigate daily routines and changes with their children who carry an autism spectrum disorder (ASD) diagnosis.

So, in this sense, technology is not only evolving and helping providers, but is now taking a step further to be a great resource for families as well.

Contemporary Pediatrics:

What questions can parents or caregivers ask their general pediatrician when it comes to this software?

Lanzon:

Receiving a diagnosis of ASD can be a daunting and challenging experience for some families. Then, even once a diagnosis is obtained, getting access to evidence-based and effective treatment like Applied Behavior Analysis can sometimes take a significant amount of time.

Families have to navigate insurance policies, waiting lists, and sometimes years of time between a diagnosis and treatment. In this interim, valuable skill development opportunities are often missed, and families are left on their own to manage sometimes significant challenging behaviors like aggression or self-injurious behaviors.

What parents need to ask, or even better yet, what a pediatrician should share with families, is that tools like CR Care Coordinator are out there and available to help them during this time.

Here at Carolina Behavioral Innovations (CBI), we believe parents are the best advocates for their children and asking questions about online resources and training materials to their pediatricians can help them gain access to this kind of technology to assist them in navigating their daily lives before, during and after ABA treatment.

Contemporary Pediatrics:

How important is it (or how helpful can it be) for families to have a tool like this when it comes to autism?

Lanzon:

Extremely helpful! Applied behavior analysis is a science; it can be technical, confusing, and not always intuitive to a parent or caregiver. However, it is evidence based and when implemented correctly, can be extremely effective in teaching skills and managing challenging behaviors.

At CBI, we really emphasize parent training because empowering and giving our parents skills to teach promotes consistency and generalization of skills. Tools like CR Coordinator help to train parents, at the core, to be able to implement ABA strategies independently. Its lessons can help parents understand the function a challenging behavior may be serving for their child so they can respond to it.

It can help them teach their child how to communicate effectively, through various modalities, to get their wants and needs met. It can help explain to them how to teach their child daily living skills like handwashing or getting ready for school or crossing the street safely.

It can even help them navigate other logistical challenges like understanding their rights as consumers, how to manage stress, or simply to understand the ASD diagnosis.

I would consider all of these to be critical and necessary skills for any family who has a child with an ASD diagnosis.

Contemporary Pediatrics:

Can you explain the market for software like this, or other similar tools? Should the use of these types of tools be discussed with the pediatrician, or what do you recommend to the parents looking into this?

Lanzon:

To be transparent, I’m not super familiar with other options that are similar to CR Care Coordinator. I believe there may be perhaps 1 other system out there that may offer this kind of support, but as far as I know, the options for specific parent training and education software are somewhat limited.

While there are countless autism-focused books on parenting along with websites available on the topic, they are often not evidence based, meaning that there is not always research to back up what these resources are directing parents to do.

Trying to sift through all of these resources can often be overwhelming as well, and often parents are pulling from a hundred different sources and spending hours of their time to try and find an answer to their one question.

Parents need to ask pediatricians about evidence-based resources that are cohesive, understandable and individualized to them. Unlike having to read an entire book on ABA or autism which is not individualized to that family, in CR Care Coordinator, parents can jump right to lessons that apply directly to them and their individual challenges and questions.

And those that designed the platform at CentralReach, have already done the painstaking hours of analysis to present material that is grounded in research and proven to be effective, unique to each patient and their family.

Every parent should ask about this and they all deserve access to this kind of training and support.

Contemporary Pediatrics:

Can you talk about the “training” the software offers? How can the training avoid pauses or setbacks when it comes to care?

Lanzon:

The setup of CR Care Coordinator is fantastic! It’s organized into lessons on various topics and each lesson presents the pertinent information for the parent by having them click through a narrated presentation.

After the lesson, it provides the parent with ‘homework’ to actually apply the material and there is even a Rubric ‘test’ so the parent can make sure they really understand the material.

Many of the topics are on specific ABA interventions; understanding and identifying functions of behavior, positive versus negative reinforcement, prompting procedures, and so on. CR Care Coordinator even offers topics related to vocational skills, community safety, understanding treatment options, and even data collection.

This can help to create seamless transitions from treatment to daily living for families, ensuring consistency with what occurs during session time and what occurs outside of it. Providers are not in the home 24/7 and parents now have a tool that is with them all the time to help them navigate challenges and questions at all times.

That accessibility also allows for continuity of care for when there may be a pause in care. For example, staffing shortages, insurance changes, sicknesses, and so on can all result in a potential pause in services, but with access to CR Care Coordinator, the resource doesn’t just go away when the provider does - it is with them to be that support when a provider may not be able to.

Here at CBI, we really value the individual, not the diagnosis, and I feel that CR Care Coordinator really aligns with this mentality, in that they provide a really unique way for parents to individualize their experience, which is through the integration of values and relationship building with their child.

These lessons walk parents through establishing, integrating, and understanding their values and how those values impact their everyday lives. It can teach them how to connect with their child, how to be present, how to play, how to prioritize and this whole other set of processes that not only focuses on treatment, but the child and family as a whole.

For us here at CBI, we feel that CR Care Coordinator helps share the message to families that they are the biggest part of their child’s treatment and that their thoughts, concerns and feelings about treatment decisions and care are valid and extremely valued.

Contemporary Pediatrics:

How can providers navigate patient expectations with a tool like this?
Lanzon:

With CR Care Coordinator, as with ABA, or any other therapeutic treatment, there is no ‘quick fix’ to challenges like maladaptive behaviors or learning communication. Utilizing a platform like this requires work, consistency, and dedication from a family to really see the impacts on their daily lives. Providers need to be transparent about this and let families know that challenges and questions will arise, but that families can focus on progress, not perfection. However, with access to a tool like CR Care Coordinator, families can have gaps filled in for them, where previously there were just voids of information. While waiting for services, during services and after discharge from services, CR Care Coordinator gives families an incredible opportunity to access quality, evidence-based skills and lessons that they can implement to help them, and their child feel empowered, unique and supported, which every family and child deserves to feel!