The Center for Persons with Disabilities at Utah State University
 

URLEND trainee exchange: Alaska

June 21, 2016 by Kelly Smith

Through the Utah Regional Leadership Education in Neurodevelopmental Disabilities Program (URLEND), trainees  from  different  disciplines  are given the opportunity to attend  an exchange experience in another PacWest LEND program.  The  exchange  experience  includes  a  full  agenda  meeting  different leaders and touring a variety of organizations involved in the care of children and youth with special health care needs. These experiences  allow trainees to compare and contrast how different programs function in different geographic regions. It also allows trainees to meet strong leaders from different fields in different systems, states, and cultures, who are caring  for  children  with  special  health  care  needs  and  their  families. Financial support for these exchanges is provided by  LEND program sending the trainee.  Following is a photo journal by trainee Katie Ahlers about her experience.

Katie Alaska-1

Katie Alaska-2 copyKatie Alaska-3 copyKatie Alaska-4 copyKatie Alaska-5 copyKatie Alaska-6 copy

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Former Division Director, Richard Roberts, dies

June 17, 2016 by Kelly Smith

Richard Roberts

Dr. Richard N. Roberts, director of the CPD Research and Evaluation Division from 1989-2010, passed away June 10, 2016 in Utah. Roberts’s career focused on children with special needs and their families, and he worked closely with the Maternal Child Health Bureau on many projects. During his time at the CPD, he published 3 books, 10 monographs, and was the principal investigator of 10 multi-year multi-site projects within the Early Intervention Research Institute, as well as directing numerous other state and regional projects. Prior to coming to Utah, Roberts was the director and founder of the Preschool Education Program for Native Hawaiian children in Honolulu.

In 2000, Roberts was presented the Outstanding Achievement Award by the American Association of University Affiliated Programs. The previous year, he was recognized by the Emma Eccles Jones College of Education and Human Services at Utah State University as the Scholar/Researcher of the Year.

A memorial service will be held July 29 at 5:00 p.m. at the Logan First Presbyterian Church, 178 West Center, Logan Utah. The family asks that in lieu of flowers, donations be made in Richard’s name to the Alzheimer’s Association.  A complete obituary is available here.

Co-workers share some memories below.

“Rich will be forever be one of my greatest mentors but also my hero during the 9/11 tragic events.  We were attending a MCH Tri-Regional meeting in Arizona during that time.  Everyone was wanting to get home to their loved ones and I will say they we were truly blessed that we were only one state away from home but none the less, no one knew at that time when it would be safe for the airlines to be up and running again.  As one of the many family leaders attending, my sole mission was to get back to my family and especially very medically complex and fragile son!  Thankfully Rich had rented a car while he was staying in Arizona for the meetings but when he called to ask if he could keep it and drive it back to Utah, the agency said, ‘absolutely not, it needed to be returned immediately!’ Well……….. this is one time that I am so grateful that someone BROKE the rules and I guess would even say stole a car regardless of what the penalties would be to get four of us back home safely.  Rich was always a champion for true family involvement and was always helping me gain the skills and information needed to make a difference but in this case he proved to be more than a mentor, he recognized the extra anxiety of having a child with special health care needs put on the tragic events and took action!  Rest in peace Rich, and I want your family to know that you made a difference in many lives of families of children with special health care needs!” –Gina Pola-Money, Utah Family Voices.  

“I had the pleasure of working with Richard during his entire time here at the CPD.  He was the Director of the Division and I was the Associate Director.  Richard was a great colleague. His work to improve services for children with special needs and their families significantly improved services and was groundbreaking for the field.  His early work on home visiting, prior to coming to Utah, helped improve our understanding of the practice.  As our Director, he was always ready to help with project planning and went out of his way to assist staff with any problems that arose.  It was sad that Alzheimer’s cut his career short.  I will always remember our years working together positively. ” –Dr. Mark Innocenti, CPD.

“I really appreciated Rich introducing me to key people in the state when I first began at the CPD. He was a good colleague and very supportive and helpful in the development of our first LEND application.” –Dr. Judith Holt, CPD.

“I have worked with Richard since he became the Director of the Research and Evaluation Division at the CPD in 1989 to his retirement in 2010. Richard has had an amazing sense of humor, which he demonstrated on more than one occasion. The one that really comes to mind is when he bought me a cowboy stripper for my 30th birthday! That is still talked about by our staff! When Alzheimer’s took most of his memory, I showed him the video of this event, and it brought a smile to his face and he replied, “I remember.” Richard was a great team leader, but what really impressed me was he compassion and devotion to the health and welfare of Native American children and children with disabilities. He was not only my boss, but more importantly, he was my friend.” –Mary Ellen Heiner, CPD.

 

 

 

UATP opens second Assistive Technology Lab

June 13, 2016 by Kelly Smith

Published with permission from the Utah Assistive Technology Program blog.Cameron Cressall is the coordinator of the new Assistive Technology Lab on Utah State University’s Roosevelt campus.

There is a new face in the assistive technology scene in Roosevelt—and he’s ready to get people rolling.

Cameron Cressall is the coordinator of the new Assistive Technology Lab on Utah State University’s Roosevelt campus. Assistive technology is used to help people with disabilities achieve independence.  The new lab will work in partnership with other providers, including the Active Re-Entry Independent Living Center in Price, to provide customized assistive technology to Utahns in the Uintah Basin.

“It’s not hard to be passionate about my job,” Cressall said. “I’m building, creating, doing fun things, making people happy.”

While the lab is just getting started in Roosevelt, Cressall is not new to assistive technology. He worked in the AT Lab in Logan, where he regularly helped people meet their goals for independence.

Both AT labs are part of the Utah Assistive Technology Program in the Center for Persons with disabilities, and they do more than just repair equipment. They also customize it to ensure it works for individuals with disabilities.

“We look forward to working with Cameron to continue meeting the needs in the Uintah Basin,” said Nancy Bentley, Active Re-Entry’s director. “Now we can involve the community even more, because the lab can take used devices, give them another life and put them into the hands of the people who need them.”

“The AT Lab on USU’s Logan campus has provided services that have helped a lot of people in Northern Utah,” said Sachin Pavithran, the UATP director. “We’re excited to bring those services to the Uintah Basin, and to provide them in a mobile format to reach people in rural settings.”

Before getting involved in the disability field, Cressall worked in construction and building. Eventually he found himself back in school at Utah State University, taking the Interdisciplinary Disability and Service Learning (IDASL) class offered through the CPD and completing a bachelor’s degree in social work. The IDASL class teaches people from all fields of study about disability issues. It also gives service learning opportunities to students, including an option to gain experience in the Assistive Technology Lab on the Logan campus.

“It totally changed my life,” Cressall said. “Of all the classes I’ve taken at USU, that one class had more impact, hands down, than any other. … It led me to what I do today.” It also provided a good blend of tinkering, building, customizing and serving people.

Both the Logan and Roosevelt labs need your donations—especially of used assistive technology equipment like wheelchairs, scooters, lifts and power wheelchairs. If you have devices you would like to donate, please call 1-800-524-5152.

 

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CAC Corner: You can make a difference

June 13, 2016 by Kelly Smith

The CPD Consumer Advisory Council (CAC) is composed of Utah individuals with disabilities, family members, and staff liaisons and advises the CPD director about the Center’s impact on systems change, advocacy, and capacity building. This month’s CAC Corner was written by CAC member Matt Bone.

Time flies.

Several years ago I received an email asking if I knew anyone who would be interested in serving on the Consumer Advisory Council (CAC) for Utah State Universities Center for Persons with Disabilities (CPD).  I did not know anything about it, so I did a little research and decided I wanted to know more.

One thing led to another and soon I was serving as a family representative on the CAC for the CPD. The CAC is made up of three types of members; People with Disabilities, members of their families, and organizations that help people with disabilities.

I found out how many services Utah State University is providing through the CPD.  I was delighted to be involved with this organization.  After a while I was asked to serve as Vice Chair during my second term as a member of the CPD.

graphic of the word "Utah" with rd rocks.I have seen several excellent people serve on the CAC. I have seen the work the CPD does.  I have made recommendations for ideas I think will help, and have felt my time has been used well.  As my term on the CAC is coming to an end, I thought I would write to encourage any of you who might be interested in serving to contact the CPD, and submit an application. You do not need to live in Logan. (I live in West Valley and our Chair lives in Price).

It does not take a lot of time to serve. There are two meetings annually that involve the entire CAC, and there are committees you can serve on based on the amount of time you have.

The CPD Consumer Advisory Council is currently seeking new members. An online application is available here. If you have questions, please contact Gordon Richins at 435-797-2832 or email  at gordon.richins@usu.edu.

 

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Success for Sam – a mother’s story

June 1, 2016 by Kelly Smith

Reprinted with permission, written by Jennifer Seamons, a local mother in Cache Valley.

Sam SeamonsThis amazing young man graduates from High School today.  There’s so many things that just make me in awe of this moment.  Yet, they seem so ordinary now.

Everyone expects their son or daughter to graduate from High School.  Right?  No big deal!  I mean I’ve already had one graduate 4 years ago, so this shouldn’t be anything new to me.  But in some ways, today marks a huge triumph for this young man……and for us, his family!

Fourteen years ago I dragged this cute little four year old from special clinic to specialist in a search for some much needed answers…….afraid to know the truth, but wanting some explanation about how our world had been turned upside down.

I looked at this cute little boy with the amazing blue eyes and wispy blond hair and wondered what had happened to the happy go lucky baby I had carried around just a few years earlier.  When did he begin to refuse to meet my eyes?  Why did he begin throwing violent fits of banging his head on the floor, the wall, anything that would make my heart lurch? When did he begin hiding in closets,, endlessly stroking his over-stuffed duck.  How had he become a stranger to me…….this sweet toddler who seemed content to follow his older brother around?  What had happened to change him from a good natured baby to a silent, anxious, hysterical, escape-artist toddler?  I needed answers……every day I felt that he drifted a little further away from our family and I panicked,…… wondering if we would lose him all together.

Answers came…….Autism…….on the spectrum……..but they came, because I felt I had to push for them.  Was I wrong?  Was I sentencing him to a label…….a life different from his peers?  Guilt washed over me as I struggled under that label……..knowing I was the one that helped fix it there. What did it mean for Sam?  What did it mean for us?  What would it do to our family?  Where would Sam end up?

For Sam, it meant finally getting some amazing people in our lives that offered help.  ADA therapy, nutritional diets, nutritional supplements, modifying his environment, making people aware of his needs, special teachers, special aides, setting him apart from other ‘normal’ children.  It meant explaining what ‘echolalia’ is to others when they asked why Sam repeated all of his sentences back. It meant aides who although trying to help him in class, actually separated him from his peers.  For Sam it meant that his big brother was continually embarressed by his lack of social barriers and social graces and his outbursts at social events.  It meant labels, such as ‘developmentally delayed’, ‘autism spectrum disorder’, speech difficulties, ‘behavioral disorders’………labels for everything that didn’t seem ‘typical.’

For us, it meant listening to a psychiatrist diagnose him as functioning on a 6 month old level when he was 4 and telling us to ‘get used’ to him falling behind his peers,  ‘Put away’ those dreams of his future….he’s just going to get worse.  It meant going to endless IEP meetings that lasted for hours, offending educators, being offended myself, trying to find someone who wanted to understand my son and help him.  Putting him in special classes, bussing him to Preschool every day, finding aid and applying for endless programs that required an amazing amount of paperwork, taking him out of school and home schooling, holding him back in school, having an IEP, not having an IEP, notes to teachers, principals, administrators.  It meant finding money for conferences, workshops, special intervention services, supplements, diets, more information.  Endless nights of searching the internet for information, reading other stories of parents that ‘cured’ their child, looking for that miracle for my family, for my son.

For our family, it meant eating weird food, holding Sam down before he got on his Preschool bus to shove fish oil down his throat and hope that he wouldn’t throw it back up.  It meant always feeling ‘different’ because we always felt panicked whenever we went anywhere with him.  Would we lose him because of his amazing ability to get away from us?  Would he tantrum relentlessly during programs, recitals, meetings, church, etc?  It meant disapproving looks from older people in church, who watched me let my 4 year old eat bags of chips all over the bench during church, because he was on a gluten free/casein free diet and potato chips were the only food he would eat or that would keep him in one spot for a few minutes.  It meant asking the Bishop if there could be a ‘gluten/casein’ free sacrament tray (no), asking for special helpers in church, at school, at home.  It meant neighbors who would kindly find him over a few blocks from our home and slip him through our front door……when I didn’t even know he had slipped away while I jumped in the shower, assuming he was watching TV.  Everything we did with Samuel at the beginning of his diagnoses seemed to scream at us…..he’s different, put away your dreams, fix him, cure him,……. give up!  Yet every year we saw a little piece of Samuel come back to us.

And now……as I see my handsome son getting ready to walk across the High School graduation stage,……..all I can see is triumph.

He is Samuel……..same incredible blue eyes and crooked smile……a member of the National Honor Society, former member of the school ACADECA team, a State Solo Winner, a Wrestling Champion, a Football lineman, a track runner, a Seminary Council Member, a lifeguard, a home teacher, a multi-scholarship winner, attending dances, going on dates, assistant to the Bishop, planning to attend BYU……..hopes and dreams spread out before him…..a person with Autism.  I have no doubts that he will achieve whatever he sets his mind to.  I see no limits for him.  I see no label.

And I watch him with his little brother, a fellow sojourner with Autism and Down Syndrome.  Labels that set limits……that wipe away hopes and dreams.  And I see as I watch him with Jacob…….there are no limits, ……there is majesty and power and limitless potential in every one of us.  No one knows what each of us has the potential to become…..regardless of the ‘labels’ we receive in this life.  You have made me a believer, Sam!  Spread your wings and fly!

Love you to the moon and back!  Mom