August 23, 2019

Warrior Parents Indeed

If you have ever been deeply involved in an issue or event that gets intensive media coverage, it is easy to find mistakes in what is ultimately reported in the press.  As a journalism major in college, we were warned that no matter how many people we interviewed, no matter how much depth and nuance we brought to a given issue, there would likely be “insiders” who disagreed with our coverage.

This is certainly the case with the extensive four-part series currently running at the LA Times, reported by Alan Zarembo with front-page photographs, and accompanying charts and facts with additional material including videos on line.

Although our son Danny is not autistic, he does share some sensory sensitivity common to children with autism and the majority of his classmates and friends with special needs are on the “spectrum” as their parents say. And many of them are quite upset with how the subject of autism has been approached by Zarembo in the first three parts of the series, especially taking issue with the article’s implications that some parents are exaggerating their children’s symptoms in order to get an autism diagnosis.

As my friend Judy Mark writes in her letter to the editor:
“In reality, for every child mislabeled as autistic there are many more who have the disorder and never get the diagnosis that will provide them with the services they desperately need.”

My own flash point with the series was with the second article, titled, “Warrior Parents” featuring a photo of Jonah Funk, one of Danny’s bunkmates from the Tikvah program at Camp Ramah, on the front page.  Zarembo detailed much of the hard work Jonah’s mom, Stacie, has done to ensure that Jonah gets the help he needs, and then wrote, “But not all parents have the time and resources to fight the way Funk did. That contributes to striking disparities in how the services are distributed.”

He goes on to document that white children (with Asian children not far behind) with developmental disabilities receive significantly more state funding than do Latino and Black children. Instead of looking at the systematic reasons for this, which I will get to in just a minute, he seems to criticizing the White/Asian “warrior parents” for hogging up the scarce resources available at the state and school districts.

Here’s the thing: each person who is eligible for Regional Center services paid for largely by the state is assigned a Service Coordinator (their titles have changed over the years but they basically function similar to a social worker). This Service Coordinator is charged with helping each family develop an individual plan, and in some cases, funding the services, such as social skills, respite and various other therapies/programs. Why aren’t the Service Coordinators doing more (with encouragement and support from their management) to help educate and empower those Latino and Black parents? Shouldn’t we be trying to bring everyone up to an optimal level of functioning instead of bringing the system down to the lowest possible level?

For parents who are educated and understand how to navigate the system, the Service Coordinators function as more of liaison than a case manager. Here’s my recommendation – create two parallel systems, one for parents who can “self-advocate” and they can be given vouchers, based on their children’s level of need that can be “cashed in” with any pre-vetted vendor, with all reporting done on-line.

The second system would be for parents who need more guidance and support, with intensive hands-on case management from the Service Coordinators.

There’s already been a successful pilot of the first model called, “Self-Directed Service” for adults with developmental disabilities at the East Los Angeles Regional Center, in partnership with Area Board X and it shows great promise.

One last thought – the timing of this series couldn’t be worse, as Gov. Brown announced on Tuesday that the state budget “trigger” cuts of $1billion will impact heavily persons with developmental disabilities including a 20% across-the-board reduction for in-home service hours. We can only hope that the LA Times will devote the same number of column inches to the consequences of those cuts as they have to this series.