DD Council meets at CPD

May 30, 2013 by Sue Reeves

Image of people in a meeting.

The Utah Developmental Disabilities Council met recently at the CPD.

The Utah Developmental Disabilities (DD) Council took a field trip to Utah State University’s Center for Persons with Disabilities on May 14.

Every state has a DD council, said CPD Consumer Liason Gordon Richins, which works with the University Centers of Excellence in Developmental Disabilities and the Protection and Advocacy (P&A) Agency under the umbrella of the Administration on Intellectual and Developmental Disabilities. The Center for Persons with Disabilities is Utah’s UCEDD, while the Disability Law Center in Salt Lake City is Utah’s P&A.

The DD Council works on multiple topics throughout the year, Richins said, supporting activities and projects that go beyond the requirements of the Developmental Disabilities Act, which makes sure that individuals with developmental disabilities and their families have access to community-based services to promote opportunities for independence, productivity and inclusion.

“The DD Council has greatly changed the quality of life for people with Disabilities in Utah,” Richins said.

CPD Director Bryce Fifield is the co-chair of the Education and Employment Committee, which supports the development of opportunities for people with disabilities to pursue post-public school education experiences, and to find and keep jobs.

The UDDC, in partnership with the Disability Law Center and the Center for Persons with Disabilities, recently offered an advanced leadership academy for people with intellectual and developmental disabilities. The academy included leadership skills development, community mentoring and support as the participants exercised their advocacy skills beyond the disability community.

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Summer fire safety: Fire is everyone’s fight

May 29, 2013 by Sue Reeves

This post first appeared on Disability Blog.

Image of camp fire.

Summer is a great time to practice fire safety.

Summer is an exciting time. I am looking forward to spending time outside, going to the pool or beach, enjoying picnics with friends and family and, of course, vacation.

However, fire never takes a vacation. Even in the festive summertime, you need to test the batteries in your smoke alarms every month and practice your home escape plan. Know two ways out of every room. If you have trouble hearing the alarm, there are alarms available with strobe lights and bed shakers to ensure you wake up when the alarm sounds.

If you stay in a hotel, make sure you become familiar with where the exits are located. Count the doors from your room to the exit. Know where the stairs are. If you are unable to use the stairs unassisted, consider requesting a first floor room and let the front desk know that in case of an emergency, you may require some additional assistance.

Summertime also brings fires and injuries due to fireworks and outdoor cooking. Knowing a few fire safety tips will help you enjoy these activities safely.

The best way to protect your family is not to use fireworks at home. Leave that to the professionals and enjoy a community display. Fireworks are very dangerous. The tip of a sparkler is hotter than 1,200 degrees Fahrenheit; this is hot enough to cause third-degree burns.

Grilled hamburgers and hot dogs are my summertime favorites, but before you start that grill this summer, check the connection between the propane tank and the fuel line. Make sure the fuel lines don’t have any cracks or holes in them. Once you know your grill is in good working condition, make sure you use it safely. Always open the grill lid before lighting. Do not add lighter fluid to an already lit fire and keep a three-foot safety zone around the grill. Use long handled utensils to keep your hands and arms away from the heat.

Summer is a time for fun and happy memories, but don’t forget to practice fire safety. Remember, Fire is Everyone’s Fight™. We all have a role to play in keeping ourselves and loved ones safe!


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Youth with disabilities to attend conference

May 24, 2013 by Sue Reeves

Image of a young man with disabilities at a rock-climbing wall.

A leadership conference for youth with disabilities will take place at USU June 10-12. (Photo courtesy of OPTIONS for Independence)

Ropes course. Barbeque. Motivational speaker. Two nights in a dorm room. Sounds like a typical youth conference held on college campuses nationwide every summer—except every participant in the upcoming youth leadership conference at Utah State University has a disability.

Jeff Sheen, a policy analyst and project director at USU’s Center for Persons with Disabilities, is one of the organizers of the event, which will take place on campus June 10-12. Sheen is the chair of Utah’s Statewide Independent Living Council’s youth service committee.

The youth leadership conference, Sheen said, is an initiative to get youth involved as consumers and prepare them to be leaders in disability advocacy. Advocates who have worked for years on disability issues are getting ready to retire, he said, and not a lot of effort has been made to groom young adults to take over.

“The youth have always had services,” he said. “They haven’t had to fight for it,” leaving people wondering who will take their place and be passionate about advocating for people with disabilities.

Two or three youth and one or two adult chaperones from each of Utahs’s six Independent Living Centers, including Logan’s OPTIONS for Independence, will participate in the conference, Sheen said.

“We’re all geared up to give them a vision of leadership, so they can say ‘I’m a leader and this is how I’m going to improve my community,’” he said. The youth will leave the conference with leadership projects to discuss and implement.

“Hopefully this is the start of a statewide youth council,” Sheen said.

Tuesday’s events include sessions with motivational speaker Todd Christensen, who is on the board of directors at the Red Rock Center for Independent Living in St. George and has a daughter with developmental disabilities.

“Todd is a world-class leadership trainer, really dynamic,” Sheen said. “It will be a lot of fun, but meaningful and focused.”

The University Inn and Conference Center is facilitating the event, and is adapting the ropes course, Sheen said. Planning the conference has been a good way to introduce the concept of People-First language, and to allow staff members to see what is necessary to make activities accessible and inclusive, Sheen said.


What is technical assistance?

May 22, 2013 by Sue Reeves

Image of TAESE logoTechnical assistance doesn’t get as much attention as some of the programs of Utah State University’s Center for Persons with Disabilities, yet it is vital to the CPD’s role to improve the lives of people with disabilities.

Technical Assistance for Excellence in Special Education (TAESE) provides research and information on all areas of special education, assists with the development and formatting of technical assistance documents and create documents in a variety of formats from hard copy to electronic as needed.

TAESE works directly with state education agencies, school districts and schools, said John Copenhaver, TAESE director. “We work with 22 states and every state is a little different. We try to find a niche that no one else is fulfilling. We’re not trying to duplicate what other centers are doing.”

Staff members facilitate critical meetings between state agencies and stakeholders like special education advisory panels, Copenhaver said.

TAESE staff recently facilitated a series of high-profile meetings in South Dakota between the state superintendent of education, parent groups and advocacy groups. In neighboring North Dakota, TAESE facilitated meetings to draft guidelines for students with intellectual disabilities.

In Washington, D.C., the public school system has implemented a survey to rate the satisfaction of parents whose children have received special education services. TAESE staff has facilitated discussions of how the response rate of the survey can be increased by making it more parent-friendly.

CAC Corner: Disabilities affected by attitude

May 20, 2013 by Sue Reeves

By Mathew Bone

Image of Kirstin Bone.

Kirstin Bone

Well we are half way through May, and so far it has been a stressful, hectic month. But having said that, there are also special things happening this month.  My daughter, Kirstin, just graduated from the University of Alabama with her master’s degree. Not bad considering when she was born, the doctors did not think she would live.

Kirstin has a rare genetic skin condition called Ichthyosis. May is National Ichthyosis Awareness Month.

My daughter is living proof that many disabilities, while serious, are often more affected by attitude than anything else.  When people have told her she cannot do something, she asks “why?”  Things she has been able to do include acting, fencing and teaching.

Here is a recent posting she put up on her blog.

When I was younger, I did not really like to participate in sports. Running often left me overheated, football was a series of painful scrapes, and horseback riding rubbed the insides of my thighs raw. I had always dreamed of fencing–even with my physical limitations. There was something in the perceived elegance of sword fighting that I could not resist. And, let’s be honest, being able to use a sword was just plain awesome. In junior high, I met a boy who was part of the local fencing club. He convinced me to drop past and see what a typical evening was like. I agreed to come past that Saturday, which just happened to be the day after the fifth Harry Potter book was released. So, I hauled myself, my best friend Kylie, and Harry Potter and the Order of the Phoenix to the fencing club that Saturday morning. I fell even more in love with the sport than ever.

Eventually, my parents agreed to let me give fencing a try. When I showed up for my first lesson, the coach–a brilliant woman named Julie–took one look at me and frowned. “Are you sure you want to do this?” she asked. I assured her that I would know if I was pushing myself too far and that I would be fine. I was lying through my teeth, of course, but I did not care. I had to give it a try. The first lesson was pretty basic: How to move like a fencer. Amy, one of the few women in the club, showed me the strange, squatting stance used throughout the fencing world. I sank down into it, and she was confused. Rather than standing flat on my feet, I was perched up on the balls of my feet–more like a ballet dancer than a fencer. She ordered me to be flat-footed, but it turned out to be a hopeless struggle. My skin has always made it difficult for me to even walk flat-footed, so I will often just walk up on my toes. This phenomenon is relatively common among people with EHK. Some even call it the velociraptor gait. My strange fencing stance earned a lot of comment from the other fencers, and I even earned the name “Jackrabbit” for the way I would bounce around on my toes. After the lesson, Julie fixed me with her eagle eye. “So, you want to come back?” she asked. Without hesitation, I told her I would be back the next week.

Fencing presented almost more challenges than I knew how to deal with. Heat became my number one enemy, since the thick Kevlar armor all but roasted me alive. I quickly developed a system of soaking the back of my jacket’s neck and carrying two bottles of Gatorade to each practice, which worked well enough. During the summer, I would even sneak an ice pack under my chest protector, just to keep me extra cool. If nothing else, I became very sneaky. Another challenge was the friction. When a fencer would hit me with the tip of their weapon, sometimes it would create enough friction that my skin would simply slough off. My skin does this instead of bruising, kind of as a deflective mechanism. More often than not, I wouldn’t even notice how many hits had peeled off my skin until the end of the night when I took my jacket off. Sometimes, after a particularly brutal bout, my arms would be a series of cuts–sometimes even my legs and chest falling victim to the same treatment. Competitions proved even more exciting, though, since the fencers I came against were not aware of my skin’s peculiarities. During a team match, one fencer hit my arm with particular vigor (by accident). I shook it off and the match resumed. For some reason, the other fencer was incredibly distracted, and I easily won the match. When I went to unhook my weapon, though, I looked down at my arm. The entire sleeve was soaked with blood. My coach and teammates rushed over to me, asking if I was alright or needed a doctor. Carefully, I stripped off my jacket and looked at the five inch gash running up my arm. “It’s fine,” I said. “Just a scratch.” Without looking back, I walked into the bathroom, washed off my arm and the jacket, and returned to the match. Every time I went up to fence that day, my opponents treated me like I was made of glass.

Ultimately, fencing was one of the best and worst decisions I made, growing up. When I finished my three-year fencing career, I was in peak physical condition and could fit into size 6 clothing. I had loved the challenge of it, but … after a time I had realized it was taking up too much of my life. Forty to sixty hours a week of fencing was preventing me from working on my schoolwork like I needed to, especially since I was entering my final year of high school and wanted to get into college. And, realistically, it was taking a toll on my health. The fencing equipment would need frequent cleaning, otherwise I would catch a staph infection or some other illness. If someone came to the club sick, I was the first person to catch whatever they had.

Taking on sports when you have a disability really is a fantastic challenge. If you ever look at a sport and say “I wish I could do that” I would suggest trying it. You never know what might happen or whose mind you might change.