What is Wellbeing? And Why Has it Become Catalight’s Most Important Measurement Tool?

Are you happy?

It’s a question in which simplicity often outweighs importance. For those who choose to give it deep thought, it can seem impossible to answer. Yet, each day, we pass an acquaintance who asks, “how are you?” or a video call that starts with “how’s everyone doing?” and our typical response tends to be “good.”

Often seen as unquantifiable, “happiness” and “wellbeing” are indistinct terms and ever-changing feelings that mean so many different things to so many different people. Because of that, they’re often overlooked.

For Catalight’s clients with intellectual developmental disabilities (IDD) including autism spectrum disorder (ASD) and their families, however, wellbeing is defined and measured. In terms of the overall goal of its services, wellbeing is what Catalight strives for above all else.

“Wellbeing is the highest-level outcome measure – the global measure that is truly indicative of how impactful our care has been overall,” said Catalight’s Chief Clinical Officer Doreen Samelson, Ed.D., MSCP. “Everything else we do needs to roll up to that.”
Catalight’s definition of wellbeing is, simply enough, “the measure of a person’s overall happiness, satisfaction with life and positive outlook.”

So how does one go about “measuring” that?

That’s exactly what Samelson and Catalight clinicians asked years ago when they had a vision to reshape treatment plans and options of care. If wellbeing was the most important indicator of success, it couldn’t just be a nebulous concept – it had to be a tangible gauge.

“We’ve got these kids, we’ve got treatment plans, we’ve got these goals. So, we could say, ‘oh, isn’t that great? Johnny met this goal,’” said Samelson, a clinical psychologist. “But, looking deeper, did that really improve Johnny’s quality of life? Did that improve his family’s wellbeing? We looked for a measure of wellbeing or quality of life that we could use.”

Looking outside of the company, Catalight only found long interview tools that wouldn’t be viable for a large base of families and arbitrary quality of life measures based on perceived challenges. Catalight began the painstaking process of creating its own one-of-a-kind scale.

Wellbeing is the highest-level outcome measure – the global measure that is truly indicative of how impactful our care has been overall.

“In the IDD/autism and behavioral health treatment space, there are all kinds of outcome measures and the one outcome measure that has been consistently missing is a quality of life or wellbeing,” Samelson said. “Nobody’s using one. They’re using goal attainment and adaptive behavior scales, as we are, but they’re not looking at the overall wellbeing.”  

Months were spent researching, gathering data and developing questions for short, easy to take 15 question surveys that individuals and families can submit twice yearly. Sliding scale answers from 1 to 5 give a numerical measure to the respondent’s wellbeing. In August, the survey was standardized into three final versions – the Catalight Wellbeing Scales for families, youths and adults. By the start of 2024, more than 3,000 families in the company’s network were taking the Catalight Family Wellbeing Scale. A statistical analysis of the Catalight Family Wellbeing Survey showing it to be valid and reliable was published in the Journal of Autism and Developmental Disorders on Feb. 1, 2024.

Historically, measuring outcomes in IDD and autism spectrum disorder focused on specific behaviors and setting goals.

“Those type of goals need to lead to wellbeing – the ultimate goal. That’s kind of a different concept,” Samelson said. “If not for wellbeing, all we’re talking about is deficits. ‘He has this deficit: He can’t count money.’ ‘She has this deficit: She’s not good with social interactions.’ Well, does she want to be more social with people? Did anyone ask her if she’d like to try to be more social? We’ve had youth who say, ‘My best friend is my dog and I don’t care about being a social butterfly.’ That’s just not who they are as a person. Pushing that person to be more social – having social goals – is not going to improve their wellbeing. If Johnny is probably never going to be able to count money or manage his own money, why spend hours doing it? Is that really going to increase his wellbeing? We need to find different goals.”

A classic example from more of a neurotypical point of view is a high school student with no interest in pursuing math-focused endeavors after graduation wondering why they’re forced to take calculus considering it will have no real-world use for them.
With autism, rhythmic and repetitive behaviors are common traits. Setting goals to eliminate those actions may cause more harm than good if the individual is doing it to self-soothe or cope with stress.

“If it’s not dangerous, is changing that behavior actually meeting the person’s needs? And are we going to increase their anxiety if we try to get them to stop those behaviors?” Samelson asked.

If a treatment doesn’t increase the family’s wellbeing or the child’s wellbeing, it’s not worth doing.

Attempting to achieve goals that are futile to wellbeing puts undue pressure on both the individual and their family. Continuing to hammer away at Sisyphean tasks with nothing to show for it can cause strife, make parents feel like they’re not doing something right and lead to all parties feeling like they’ve failed when, in reality, the goal was never important or achievable. That’s the opposite of wellbeing.

Catalight allows parents and individuals to choose their own treatment path and set their own goals. Studies show self-efficacy goes up significantly in parent-mediated ABA – where caregivers are given the tools and strategies to intervene with their child 24/7 – and dips slightly in a three-tiered model where parents are reliant on paraprofessionals coming to their home and delivering ABA.

“The higher the wellbeing the more confidence the parent has in their ability to parent their child. Parents feel they can better manage their family, be more effective in parenting, better understand their child, recognize how to respond to certain behaviors, and know what their child needs,”Samelson said. “The research on IDD shows that self-determination is the most important factor correlated with wellbeing. If you can improve someone’s self-determination, you will improve their wellbeing. Based on our research with families, if you improve wellbeing you decrease parental stress.”

The Catalight Wellbeing Scales give a reliable barometer how an individual and family are progressing. If wellbeing is dropping, clinical care managers know that there has been a change in dynamics that may necessitate different goals or

All three wellbeing scales are offered to all here.