Saturday, February 9, 2013

Jake and the Utah State Legislature, Part II


Here’s a clip of Jacob’s testimony before the Utah State Legislature’s Social Services Appropriations Subcommittee:



So, there’s more to the story, now:

Thursday morning, I got a call from Jodi saying that she’d just been told that on KSL talk radio, Doug Wright had played the recording of Jacob’s testimony before the Utah State Legislature and commented on it.  That was pretty exciting, because it showed me immediately what I’d already known, that Jake’s words were touching people.

Right away, I called KSL and said “I’m Jacob’s father and I was there when he testified!” The screener taking my call, got really excited and said, “Let me call you back in about an hour and we might be able to get you on the air with Doug.”

I waited, and they called back, and we did, in fact get me on the air.  It was fun and Doug was a very insightful interviewer.  Hopefully, all of that publicity will help more people to be aware of the financial plight of the disabled.

One thing I noticed at the Utah State Legislature committee meeting and I tried to bring out in the interview was this:  A lot of the testimony shared that day was by disabled adults talking about how the services that they get from the state government have helped them to become independent, and to get productive, real employment, in the non-disabled world.  One guy I met there was very friendly and personable, and he and I got to talking about wheelchairs, because his is the same brand as Jacobs.  When he testified, he talked about being able to go to work as a software engineer.

Another guy has a degree and works in the Disability Law Center.  A lady there told about her job in an office in Salt Lake.

My point is that this is not a collection of takers and leeches.  These are now productive, employed, tax-paying adults.  Our great society has invested in them, and now they are contributing to society in meaningful, practical ways.

Someday, Jacob will be out in the workforce.  I can already see ways that he’ll be able to contribute, and he’s looking forward to a long and productive life.

As Jacob says, “What am I worth?”

Wednesday, February 6, 2013

Jacob and the Utah State Legislature

Every year, when the Utah state legislature meets, I lose sleep.  It has a lot to do with what might happen if the programs that pay for Jacob's medical care get cut or removed.  Every year, it seems, they want to slash the budgets.

I know that it's tough.  Everyone wants their particular slice of the pie, and the poor legislators have to look at the big picture and decide who gets what.  I'm not being sarcastic when I say, "poor legislators", either.  I mean, really, that's gotta be a tough job.  Whatever you decide, someone will be mad at you.

But that's not really what I wanted to write about today.

I wanted to write about Jacob.  Every year, we try and get him signed up so that he can testify before the Social Services Appropriations Committee.  He's been doing it for several years, now.  Last year, unfortunately, we didn't get him up to the Capitol in time, but this year, I did.  He and I both testified.

He and I were second and third on the list, respectively.  When it was his turn, he was firm, confident and spoke clearly.  He talked about his illnesses, and conditions.  He asked the legislators to think of him, when making the budget cuts, and ask, "How much am I worth?  How much are my friends worth?  How much is my family worth?" Then he flashed his Jakie smile and was done.  The chairwoman of the committee thanked him very much for being there and sharing his point of view.

How many 13 year-olds can stand up in front of 20+ powerful adults and address them with calm and confidence?

Then I stood up and did my two minutes of grown-up blah-blah-bah.  And then they were on to other adults.  There were some great stories told, as some of them talked about how State programs had helped them get through school and find meaningful work and independence.  There were disability professionals with statistics, charts, and graphs.  I'm just very proud to have Jacob help them to see the very human side of the budget decisions.