Autism

Must Reads: Where Is the Shared Sacrifice?

A blog post by Mark Price, originally published at Third and State.

When the economy is as weak as it is today, the prudent approach to the state budget is a balanced approach that looks to cut spending and raise additional revenue. A Patriot-News editorial this morning points out that nonprofit groups providing services to victims of domestic violence and rape, as well as people with severe health problems, have been particularly hard hit by the last several years of budget cutting.

The last couple of years, especially 2011, have been tough ones because of state funding cuts, and this year might not be much better. As lawmakers and the governor look at another difficult budget — introduced in February — they need to think hard about what further reductions in funding to charitable groups will mean in communities across the state...

Some of the testimonials in the latest survey [by the United Way] show the grim reality for many people seeking help:

A shelter director said, “For the second year in a row, our shelter has turned away more battered women and their children than we were able to house, due to lack of beds.”

“We are unable to provide health center services as we were before. A nurse is only at the center 16 hours per week vs. 40 hours,” one service stated.

“We’ve had to tell people wanting to get their GED that they had to seek services elsewhere,” a provider said.

“Ms. Smith has ALS and needs a device to be able to communicate in her last days. However, she is on a waiting list to borrow the equipment she needs,” added another.

The Beauty of First Person Experiences

Yesterday, we had the amazing story of Police Commissioner Charles Ramsey out on patrol, coming across a brawl on the streets, and when he called for backup, the police radio system crashed, leaving the cops largely deaf to what was going on the streets and with their fellow officers:

The trouble started at 9:36 p.m. Tuesday, when Ramsey radioed for an assist after he and his driver came upon two drunks fighting outside a bar on Cumberland and Cleveland streets.

Dozens of cops tried to get on the air and respond to the call, causing a computerized controller and an electronic card to fritz out at a communications tower on Domino Lane in Roxborough, said Chief Inspector Michael Feeney.

The same tower was struck by lightning on Monday, causing a brief crash.

"It just took the whole system down. That's the first time the backup systems have gone down, too," said Feeney, who heads the police department's Information Technology and Communication Services Bureau.

For those not following at home, this isn't a new problem. The radio system has been a total disaster, failing repeatedly. This time, it appears that two things were different, bringing the issue to a critical mass. First, the backup system went down. And second, the police commissioner was in the middle of it all. And so now, with each of those two factors, I will bet that the system gets scrapped. All of that is good news for our police of course, and that shouldn't be forgotten.

Which brings us to story number two, also good news. PA has passed a law, which Governor Rendell signed, that will mandate that insurers provide insurance for kids with autism:

Starting next July, the bill will require private insurers to cover diagnosis and treatment of autism spectrum disorders, up to $36,000 annually, for those under 21. That includes coverage for applied behavioral analysis therapy - or treatment focusing on teaching social, verbal and other skills to help shape behavior - which advocates say is essential to treating the disorder.

For treatments above the $36,000 cap, families, regardless of income, can still turn to the state's Medicaid program to fill in the gap. Health plans covering businesses with fewer than 50 employees are exempt from the bill.

Rendell and others who championed the issue believe Pennsylvania's autism-insurance law is among the strongest in the country.

They may be right, many autism advocates say.

I have seen autism up close, and the effect it has on families trying to cope. It is a brutal experience, where parents are told that the earlier and more aggressively they intervene with their kids, the more normal life their children will lead. But, many insurance companies refuse to actually cover those treatments. And so, the parents of autistic children are forced to spend every waking second advocating for their child, helping their child, and figuring out how in the world they are supposed to pay for it all. If they are anything less than rich? They simply cannot pay, and run up bills, go into debt, and maybe declare bankruptcy while they are at it.

But, it looks like PA has taken the lead, and become one of a few states to pass this important bill. So, why did it get done here, and now? Lets see:

First, we have Rendell generally willing to push the insurance companies a little. Second, the parents being crushed by the weight of their children's autism are many times middle class and articulate, and after spending day and night advocating for their kids, they get pretty good at hammering at legislators to fix this. And third, Denny O'Brien, the Speaker of the PA House, has also experienced this up close, with a nephew with Autism, and has made it his own personal struggle over the course of his career.

O'Brien, whose nephew is autistic and who has championed autism causes throughout his legislative career, believes it is about "a social responsibility" to children with the disorder.

One of the reasons he became speaker, O'Brien said, was so that autistic children - he calls them "my kids" - would "go from 3-by-5 cards to 8-by-10 glossies" and would have "a seat at the table."

O'Brien fought for kids with disabilities before his own nephew was diagnosed. But, as I bet he would agree, there is a deeper understanding he gained of how tough autism is when he saw- and sees it- with his own family.

So, the Police Commissioner and the Speaker of the House, two of the most powerful people in the City, have a problem become personalized, and so, there will be a solution.

Saying all politics is personal is not exactly groundbreaking stuff (welcome to the blog!). But, sometimes I think we (maybe just I) could use a reminder of that.

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