Self determination indeed 💪

Hi everyone - Jake here, Casey’s husband.

Part of my job for At Peace Parents is digging into every possible nook and cranny to find governments, nonprofits and foundations that will pay for families to enroll in our live program and coaching services. 

I don’t do this because of the money. 

I do it because I know how frustrating it is as a parent to have the institutions of our society - public schools, medical services and insurance, psychological supports, etc. - repeatedly refuse to provide what our family and my kids need. 

And we have had some great successes. 

We’ve found programs in Colorado, Wisconsin, and California, as well as numerous governments outside the U.S., that will pay for families to get our support. (You can find the list of all the programs here.)

But not the one that called me yesterday.

Weeks ago I spoke with a parent in California enrolled in the state’s Self Determination Program. It’s a program that gives parents “more freedom, control, and responsibility” as they use state funds to pay for the services that best meet their child’s specific needs. 

We have worked for more than a year now providing families across California what they need to use this program to successfully access funding for our Paradigm Shift Program® and private coaching. Doing so requires lots of admin work from me and our team, but we do it happily, because we know how important the support is to the parents.

The call I got yesterday was from two members of the clinical team at one of the state’s 21 Regional Centers. Parents have to work through the center in their region to access the program’s funds, which hasn’t been an issue for countless parents. But a few weeks ago I spoke with a mom who said her regional center wouldn’t cover our services. The arguments her caseworker made seemed ill-informed, so I offered to reach out to the center’s clinical team to explain in more detail what we do and the evidence base behind it. 

Fast forward to yesterday, when the clinicians called. 

After I provided a bit of background for the conversation, they began talking, and I quickly got the familiar feeling I’ve had in so many conversations as a parent of PDAers. 

And that is that it wasn’t really a conversation. 

Their minds were made up before they called. 

Among their reasons for not covering our services:

• PDA isn’t in the DSM, and there’s still debate on how to categorize it. 
• Casey is a social scientist, and not a clinician or psychologist. 
• And although we offer the only program that has been demonstrated by a tier 1 research university to be effective for parents of PDA children and teens, there’s only one such study and it’s a pilot study instead of a full clinical trial.

Of course, their arguments are so easily rebutted:

• The DSM can’t keep up with the lived realities of families. Even its publisher says this is a problem. 
• Casey’s not teaching parents medical or psychological strategies. She’s teaching them how to get through the countless challenges we all face as parents trying to implement a parenting approach that runs counter to the dominant paradigm. She uses the scientific method to do this - and that's how she built the program - but her expertise comes from being a parent of two PDA children.
• Pilot study or not, it demonstrated statistically significant impacts of our program. Our colleagues at the University of Michigan Medical School want to pursue a full clinical trial, but like all research, that takes time and funding. 

I shared much of this with the clinicians, but at a certain point it was clear to me I was wasting my breath. They were dug into their position. 

My last appeal was essentially to their humanity.

I pointed out that while their decision will have little impact on our business - we will continue to serve families through the Self Determination Program at other regional centers across the state - it will have a significant impact on the families they serve in their region. 

There are no other approaches that consistently support PDA children and teens, let alone any with scientific study demonstrating efficacy. 

And telling a parent they need to wait for the DSM to catch up is like telling them they’ll be able to access the support they need - support that I believe with all my heart can prevent lifetime substance addiction, incarceration and suicide - right around the time their child becomes an adult. 

It didn’t matter. Their answer was no.

And so I was left feeling what Casey and I realized six years ago, when we first learned our older son was PDA: No one is coming to help, so we will have to do this ourselves.

But here’s the difference six years later - hundreds of thousands (if not millions) of parents now know what PDA is. And collectively, we show up. 

When the University of Michigan called for survey participants to help define PDA (for a study currently out for peer review and publication), ten times the number that usually answers in a week did so in a few hours. 

When the journal Pediatric Investigation published the study about our program, so many parents visited their website that it crashed.

And since we made all Casey’s masterclasses free, countless parents like you continue to donate to our scholarship fund to support families who can’t afford the Paradigm Shift Program®.

None of this reduced my frustration after the call yesterday. On behalf of the families in that region - and personally and professionally - my blood boiled when I hung up. 

But I know this is not the end of the story. 

Like so many parts of parenting a PDA child or teen, it goes slower than we’d like. 

But we do move forward, and I know so many of you are determined - individually and collectively - to do so.

Thanks for standing alongside us.