Autism Awareness Night

March 1, 2012 by cpehrson

The number of children with autism has continued to grow for the past 15 years.  Utah’s rate appears to be higher than the national average that is 1 in 111.  The number of children identified with autism in Utah doubled from 2002 to 2008.  About two children per day were born with an autism spectrum disorder (ASD) in 2008. (Salt Lake Tribune, May 2011)

“It is our life,” states Laura Anderson, President-elect of the parent-run Autism Council of Utah and mother of a son with autism.  “If you think autism isn’t going to touch you somehow in your life, you are sadly mistaken. It’s in our communities. It’s in our schools. It will be in our workplaces.”

With autism becoming such a wide-spread disorder and touching so many lives in Utah, the Autism Council of Utah and RC Willey stores have joined up to sponsor Autism Awareness Night at the Utes Gymnastics Meet on March 9, 2012.  Free tickets are available at RC Willey stores or you can contact Laura Anderson for additional tickets at lauanderson@comcast.net or call 801-936-1810.

Throughout the meet there will be information and videos shown about autism.  All families and friends of autism are invited to attend and support these efforts to raise the awareness of autism and other ASD conditions.

 

Tags: , , ,

Disability film screening and panel provoked discussion

January 23, 2012 by JoLynne Lyon

Classroom with people in desks in semi-circles faceing a panel of 6 people with disabilities and one moderator; slide on wall says "Lives Worth Living" behind the panel

at the film and panel discussion in the Merrill-Cazier Library

On Friday, a panel sponsored by the Center for Persons with Disabilities took a look back at the events that marked the history America’s largest minority group: one that has fought its own battles for independence, acceptance and equality.

Attendees started by viewing the documentary Lives Worth Living, produced by the PBS series Independent Lens.The film traces some of the significant events in disability and advocacy. Its images were dramatic, from the obvious neglect at institutions for people with intellectual disabilities to a stair-crawling demonstration up the steps of the US Capitol by people who couldn’t enter the building in their wheelchairs.

After the film, the panel answered questions on the future for people with disabilities. The event ended with a reception by the poster exhibit in the Special Collections area of the Merrill-Cazier library. Here’s what we heard:

Andy Curry, Chair for the Utah Healthcare Subcommittee: Though the ADA passed, it wasn’t instantly embraced, even by university campuses. He began using a wheelchair at the time it passed, and a year or two later he began scouting out college campuses. “It was clear that some of these universities didn’t even want me there.” After graduating from New Mexico state he began the job hunt and found he could not physically enter the buildings of some prospective employers. “If they’re not accessible, they’re not going to hire you.”

picture of panelist Keli Babcock, beautiful smile, long dark hair, sitting in a power chair

Panelist Keli Babcock

Keli Babcock, education coordinator and peer mentor at the Tri-County Independent Living Center in Odgen, Utah: “With all this accessibility that’s slowly coming about, the result is obvious. People with disabilities are able to get out more and attend universities and get jobs… People are seeing us, where back years ago they did not see people with disabilities out in the community. … I think that’s big. There’s still a long way to go but we’ve come a long way… It’s exciting to see the acceptance that’s taking place.”

Panelist Tom Brownlee, self-advocate and chair of the CPD’s consumer advisory council: “Things are getting better, we’re getting there but there’s still a lot of advocating work to do… Everyone has a right to have their dreams come true.”

Sachin Pavithran, interim director of the Utah Assistive Technology Program at the CPD: “We have really a long ways to go to get equal access which we all deserve. … Everything is on the web now. A lot of information is not available to someone who is blind because its not accessible.”

Likewise, he said, many appliances now have touch screens that can’t be operated by people who are blind. “It is possible to make it accessible, but manufacturers don’t care about it. … It’s not just a luxury. If you can’t cook, if you can’t wash your clothes, how are you going to go to work?”

Scott Ferre, Vocational Rehabilitation Counselor for the Deaf and Hard of Hearing in Salt Lake County, commented on how important it was when the students of Gallaudet University–a university that had been established for people who were deaf and hard of hearing. Since its inception it had always had a hearing president, but in 1988 students demanded a university president who would better represent them. The protest helped them to be recognized as people, he said, and they realized they shouldn’t just “sit down and shut up.”

Andrea Pitts, who currently serves on the Utah Independent Living Council, offered this advice to people who are working to make good changes: “Keep on plugging.” The beginning stages are often more discouraging than the middle and end stages.

Tina Peck, who works for the Disability Resource Center at USU:  “For me, the fact that buildings are accessible and they did that for me… it really hits home for me because before any of this, I wouldn’t have been able to go to school. I just finished my first semester of my masters degree.”

Moderator and CPD Training and Development Specialist Jeff Sheen issued a challenge to the attendees.  “We want you to take this information and go out and change the world.” Start by striking the “r-word” from your conversation, he said, and gently remind others that it’s a hurtful word.

For more photos of the event, visit our Facebook page.

Dr. Marvin Fifleld and his wife looking at some of the disability history panels displayed on the wall

Former CPD director Marvin Fifield with his wife, Diane, at the exhibit

 

Tags: ,

CAC member Kelly Holt nationally recognized

January 10, 2012 by cpehrson

Kelly Holt, beautiful smile, short  blond hair, wearing a striped orange and white top

Kelly Holt, a member of the CPD’s Consumer Advisory Council, already has an impressive list of achievements that showcase her advocating efforts for those with disabilities.  She was recently recognized for her efforts at the 2011 National Association of Councils on Developmental Disabilities Annual Conference, in Washington D.C.

Kelly was chosen as the self advocate recipient of the Champions of the Equal Opportunity Award. Only one self advocate is chosen in the nation, along with one Political representative , that has made a significant contribution to advancing the values and goals of the Councils on Developmental Disabilities.

Kelly was chosen for advancing the goals of increased independence, productivity, and integration of people with developmental disabilities.

Kelly grew up in California and moved with her family to Price, Utah over ten years ago.  She soon became active in the self-advocacy movement, and came to an advocacy meeting in Salt Lake City.  Kelly immediately saw the “big picture” and her local legislators and Price elected officials soon came to know her as the “language matters” advocate.  She currently serves as a Board member of the Disability Law Center along with her role as a self advocate member on the CPD Consumer Advisory Council.

Kelly is self-employed and lives with her sister and father.

We are proud of Kelly’s achievements and are grateful that she is a part of our Consumer Advisory Council.  Congratulations, Kelly!

Tags:

CAC Corner: Tom Brownlee-You can make a difference

January 9, 2012 by cpehrson

Head photo of Tom Brownlee, happy smile, dark brown hair with fancy goatee beard and mustache

This Consumer Advisory Council Corner Blog is written by CAC Chair, Tom Brownlee.

This upcoming Utah Legislative Session (January 23-March 8, 2012) will be important, as they will decide on money for programs for people with disabilities.  It looks like the governor was gentle (last session) and funded some of these programs we need.

As an advocate, I testified, shared, wrote, and emailed local law makers.  In the past, I have made a difference in doing these things. I have written many representatives and senators and gotten  many responses back from them.

This year I plan to attend my caucus which will be a new experience for me.

Another important election for this year is for the President of the United States (November 6, 2012).  We want all people with disabilities to get out and make a difference and cast their vote.

NOTE:  You can find Utah voter registration information and how to register for an absentee ballot online. 

The AUCD is holding a Disability Policy Seminar in April that will be focusing on presidential election-year issues and how to make a difference with grassroots advocacy.

Tags: , ,

CPD Legacy Story: Through siblings’ eyes-a different perspective

October 24, 2011 by cpehrson

This blog was written by the three sisters of Scott Pehrson, a participant at the CPD’s Developmental Skills Laboratory adult day program.  You can read more about Scott’s journey at the CPD in a previous CPD Legacy Story blogpost.

Scott with his sisters

Scott with his sisters, Michele, Jeanette, & Anna

“Rubber Duckie, you’re the one, You make bathtime so much fun!  Rubber Duckie, I’m awfully fond of you, Vo-vo-de-o!”

We know all of the Sesame Street songs that were ever written; when one of us starts singing the first line, the others join in and finish the song.

That’s the kind of thing that happens at our house.  It happens when you’ve spent your childhood listening to all of the Sesame Street videos in the world, over, and over, and over again.  That’s the kind of thing that happens when Scott is your brother.

Scott is the second oldest of four siblings; one brother with three sisters.  He thinks he is the king and we are only here to serve him.  He’s pretty much right about that.

One of the greatest things about growing up with a brother who is severely disabled is that you learn to think of someone else’s needs before your own. “His needs had to come first, and that is sometimes a hard sacrifice to make as a child and as a teenager.  He couldn’t be left alone because of his cognitive limitations; he always had to have someone near him to make sure he had his helmet on (in case he had a seizure); he had to be watched when he ate so he wouldn’t choke; you had to know where he was at all times.” A lot of that responsibility fell on the oldest sister.

Everyone had to make sacrifices to make it all work.  “Having lots of responsibilities that our friends didn’t have was a challenge. I feel like I had to grow up much faster because of the responsibilities I had with Scott,” shares the youngest sister.

At times, each of us had our “Why do I have to have him as a brother?” moments.  Like when he popped off all of the heads of our Barbie dolls…yet again.  Or when we were awakened  by a big plop of drool on our head and a happy “Hi!”  Or when we had to clean up his books spread all over the floor for the hundredth time.  Or when he decided to color all over our homework assignments.  That’s when we decided to put locks on our bedroom doors.

Then there’s all of the summer vacations that we didn’t take as a family.  The times we didn’t go out to eat at restaurants.  The times we didn’t ask our friends over to play or sleepover because Scott would “bug” us.  The times we had to go to Grandma’s house or tend ourselves when we got older while Mom and Dad were at the ER, the doctor’s office, or the hospital with him.

“There were times when I was growing up that I wished Scott was different,” another sister shares, “but he has always been a big part of me.  It wasn’t easy growing up with a brother who has special needs.  It had its tough moments, but those moments aren’t the ones I dwell on.  I dwell on the ones where he has given me something.  When I think of Scott, I think of his sweet smile, his big hugs, and the special moments we have together.”

We’re all on the same page about the great impact Scott has had on our lives.

“At a young age we had responsibilities that most people don’t have, which was a challenge, but also a benefit, because, as an adult, I know that my experiences with Scottie have made me treat and see people differently,” one sister shares.  Another agrees, “He has made me a more compassionate, unselfish person.”

“I think that one of the best things about growing up with Scott is how much he taught me!  He taught me to laugh and to be grateful for the little things in life. He taught me responsibility, patience, persistence, laughter, love and much more.  I feel like I have always had such a special bond with him and am so grateful for him in my life. ”

“I wouldn’t trade him for a brother.  I wouldn’t trade who he is because he has made such a difference in my life.”

One of the differences that he made in all of our lives was who we chose as friends, and eventually, who we married.  Any friends that we brought home had to pass the “Scottie test,” as we called it.  If they ignored Scott, or he didn’t “buddy up” with them, then they didn’t become close friends of ours.  We knew that he was drawn to people with good hearts.  Needless to say, all of our husbands passed the “Scottie test.”

Now that we are all out of the house and Scott lives alone with Mom and Dad, we are still concerned about his needs and the challenge that he is for our parents.  What does the future hold for him and for us, as his sisters?  That’s hard to say at this time, but, we all want what’s best for him.  We know he thrives on his routines and his simple life, and loves to go outside to see his animals. As he gets older and our parents get older, we realize that in order to keep that for him, it will take sacrifices from us.  We are up for it and will do whatever it takes to keep him safe and happy.

We are all so thankful for Scott in our lives and for the things that he has taught us.  For now, it is time for him to teach the next generation.

Uncle Scott with six of his nine nieces and nephews.

Tags: , , , ,