Social Security PASS Program: A pathway to self-employment

How 1 Autistic Young Man Runs a Business is a great article sent to me by reader "K." It describes how Joe Steffy, a young man with autism and Down's syndrome operates his own Kettle Corn business, Poppin' Joes Kettle Corn. This guy is from Kansas and is also nonverbal.

Joe developed his business with the help of his parents, a consultant, and a program that's news to me - the Social Security Administration's Plan to Achieve Self-Support program (PASS). He now has five part-time employees and unmeasurable self-esteem and sense of worth that comes with running your own company.

The PASS program offers resources to enable people with disabilities in the Social Security system to begin work or return to work. A key support in the program is the ability of persons who receive Social Security benefits to set aside money and/or things they own to pay for items or services needed to achieve their specific work goal.

Joe was required to develop a business plan to participate in the PASS program. The webcast on his web site, "Developing a Business Plan for Self Employment" may be useful for families exploring this employment option. The PASS program has other requirements, all outlined in this link.

More information about the program, and other success stories, can be found in this video from the University of Florida Institute for Child Health Policy.

What I don't know is how this program is fairing in light of budget cuts and the economy. It would be a shame to curtail the program, especially since participants who succeed save the government money. For example, Joe no longer receives Social Security disability payments AND he pays state and federal taxes.

If any readers have experience with this program, or know about it's future fate - please share.

Sleigh bells ring - and he IS listening!!

"That's a Christmas song!" Sayer exclaimed the other day in the car. And so it was. A true confession - I am born and raised Jewish gal who harbors a secret love of Christmas/Holiday music. I just always have; I actually look forward to those 36-hour Christmas Eve/Day radio marathons. I feed my addiction mainly in the car, listening to the radio churn out "White Christmas," "Grandma Got Run Over by a Reindeer" and the like. I only listen without the presence of my husband, Dan, or older son, Jacob, who both call holiday music "drivel."

Back to Sayer's reaction - I was actually impressed that Sayer recognized the song on the radio as a Christmas song - it shows that he can generalize songs he hears in school, at department stores, and so on. I hadn't really thought he noticed that closely what is playing on the radio; and the fact that he does is a good thing.

How much I have changed since the time when Jacob was young, when I was indignant when a Christmas song was played at a school winter concert. When Jacob was young, I clearly told his teachers that he was Jewish, and we would prefer that he not draw or write about Christmas trees or Santa Claus. I did volunteer to help his class mates understand and celebrate Hanukkah, and so I have contributed more dreidels and pennies through the years than I care to count.

Now, I pick my battles, and pick them carefully. This month, when Sayer brought home a December calendar with his drawing of a Christmas tree, I was a bit taken aback - oops; gotta tell the teacher he's Jewish. But, actually, I was more thrilled that:

a) He has learned how to draw a tree (representation drawing is still an "evolving skill") and

b) His teacher thought of having the kids do a calendar with the school schedule on it for us to share with Sayer. Very handy, since we can point out exactly when winter break begins.

Instead of being annoyed, I simply wrote a note saying Sayer was Jewish and he loved to talk about Hanukkah. I also offered to help the class get into the Hanukkah spirit. So, it's off to the party store to stock up on dreidels for his class mates, but it's all good. As long as I can sing along with Burl Ives, Eartha Kitt and John and Yoko, I'm fine with it.

The Longest Month: Or, Trick-or-Treat at last

Finally, the day has come. No more "28 days until trick-or-treat" or "Nine more nights until trick-or-treat." Sayer's concept of days, weeks and months is still emerging. He understands when a new month occurs, and on the first day of each month he eagerly prints out that month's calendar on Starfall.com.

The tricky part is, he thinks that once it is October, it is Halloween; once it is December it is Hanukkah, and so on. We have had to explain that Halloween is the very last day of the month. So, we have all heard the count down shuffle for quite a while.

And this is the first year that we have gotten a store-bought costume for Sayer. Not because in previous years I have labored over the sewing-machine making one [as if!!]. But, because of his sensory issues we have doubted that he would wear one. Instead, we have thrown on him a witches hat or Dracula cape; somehow improvising from the Bin O'Halloween - our plastic bin of aging ghoul make-up, tacky decorations, spider rings and masks.

This year I insisted he needed a costume to get candy, and at Target Sayer agreed to the Doctor costume. Spiderman I'm not sure he gets, but he DOES know about doctors. Earlier this week we had a trial run, and to Sayer's relief his costume has no dreaded snaps, is soft and can be put on over his "regular" clothes. Will he wear it for more than ten minutes? We we reach a milestone? I'll report back.

One Halloween milestone Sayer did achieve is that for the first time he told us that his teacher and class mates would be wearing pajamas today. Pajama Day is his school's tradition to avoid the physical and emotional perils of wearing a costume at school. Sayer told us that he didn't want to wear pajamas, no thank you. Nonetheless, we were excited that he was aware of the option and is clearly "absorbing" what he is hearing in school.

I will have to keep such accomplishments in mind as we deal with the sugar rush that will come during and after trick-or-treating. Up until last year, there WAS no after trick-or-treating, since Sayer would knock on a door, get candy, say thank you and then stop and eat it all before continuing on to the next house. I suppose it is another milestone that Sayer is now able to stock pile and gorge. Ah, progress.

The Victory of Defeat: Losing a game as a developmental milestone

Last Saturday Sayer and I met up with two other boys on the autism spectrum and their parents at Big Al's to bowl. The bumpers went up and they played. Sayer was most interested in seeing the ball come up the shoot after each play, yet he was the front-runner throughout the game.

On the other hand, his buddy "J" is what his mom calls "A sore winner and a sore loser, both." I had never seen his sore loser side, but as he was in last place he got very upset. Sayer ended up winning the game but wasn't interested in the score, especially as the next step in the outing was to visit the arcade and get overstimulated by the lights, sounds and crowds (goody!). Luckily, the arcade cheered "J" up,too, although he also did a good job of calming himself down.

Given Sayer's limited concept of competition, then, I was surprised and pleased last night when, for the first time, I had to "fake it" when playing a game with him. We were playing "Mr.Mouth" and flipping small plastic flies into Mr. Mouth as he spun around. I got the hang of it before Sayer did and he actually got frustrated that he couldn't get any in. In the past, he has not really cared on way or another.

So, I faked it and deliberately missed most of my shots. Parents of typically developing kids are cautioned about doing this but for us it was a GOOD thing that Sayer noticed my flipping finesse and compared it with his own. I gave him some tips on how not to "over-flip" and he eventually got in. The look of pride and satisfaction as he got those discs in was priceless!

A Disabled Swimmer to make us proud

There was a fascinating article in the New York Times June 18th , A Disabled Swimmer's Dream, A Mother's Fight, about Kendall Bailey, a boy with autism and cerebal palsy who was almost disqualified from the American Paralympics team. The author of the article, Alan Schwarz, was on Talk of the Nation last Wednesday and talked about his experience researching and writing the article. He clearly took the time to understand this family and really "get" how important competing in Bejiing is to the boy, Bailey. He also writes beautifully about Connie Shaw, Kendall's mom, and her fierce advocacy for her boy.

The American Paralympics committee questioned whether Kendal was sufficiently physically disabled "enough" to compete in the Paralympics. Intellectual disabilities alone are not a classification for the Paralympics. Ultimately, the family appealed on a national and international level and Kendall be going to Beijing and likely setting new world records.

If you have a few minutes and don't mind if you start of get weepy (I recommend not driving!), listen to Alan Schwartz describe how important swimming is to Kendall. Here is the National Public Radio link.

Did the U.S. Paralympics committee act out of ignorance? Did they act out of malice? Discomfort about developmental disabilities? Is there an "Us" vs. "Them" vibe between the developmentally and physically disabled? I'd like to know what you, dear readers, think.

There has been a lot of talk recentlyabout how we have become a multi-racial society with blurred lines between black, brown and white. Similarly, can our society no longer have sharp lines between phsycial and intellectual disabilities? Again, what do you think?