Reflections on the National Forum on Disability Issues

October 2, 2012 by JoLynne Lyon

Gordon watches the forum

The National Forum on Disability Issues did not succeed in attracting the two presidential candidates. That said, it was a heckuva lot more interesting than we expected.

Disability is a relevant national issue. A recent, weighted survey found that 51 percent of respondents either had a disability, or had a family member or close friend with one. The forum itself was sponsored by 50 different organizations and viewed in numerous locations, including ours. It was billed as the only campaign event with a unique, disability-specific view.

It was a step forward for a group that, as Ted Kennedy Jr. put it, talks a lot but doesn’t get out and vote.

Both candidates appointed representatives to speak for them and field questions.

Ted Kennedy Jr. was President Obama’s representative. He spoke passionately for people with disabilities, as a proud member of the disability community. (He lost a leg in his fight with bone cancer as a child.)

“We know that people with disability don’t want a handout, they want a job,” he said. “We’re the only group out there that want to pay more taxes… But we don’t want to trigger the loss of health care benefits.”

Congresswoman Cathy McMorris Rodgers (R-Washington) represented Governor Romney. She is the mother of a child with disabilities. While stressing that it’s important to maintain protections for people with disabilities, she said it would be great if government programs could be more efficient.

Both representatives said attitudes toward people with disabilities need to change. They both said employment for people with disabilities is important.

They disagreed on plenty of points, though. Here’s a sampling of their views:

Ted Kennedy Jr.

Kennedy said Governor Mitt Romney would slash the Individuals with Disabilities Education Act  by 20 percent. He pointed out that the Republican Party Platform asks its members to vote against the UN’s Convention on the Rights of People with Disabilities. And he argued against the Republican idea of block grants for Medicaid, which amount to a cap.

The most important question he would pose the candidates was this: How they would expand jobs and independent living for people with disabilities? The answer would be telling, he said–it would show whether the candidate’s attitude was based on fear or pity or respect for civil rights.

Congresswoman Cathy McMorris Rodgers

States and private companies have found innovative solutions that the Federal Government could learn from. Rodgers pointed to Walgreen’s stores, which are now being built using universal design, and a Wal-Mart experiment that put “must-have” items in an easy-t0-reach spot at the front of the store.

Budget realities mean that policymakers have to make some hard decisions, she said, but the government–and the provisions of the Affordable Care Act–are not being honest about the true cost of delivering services. She argued that more should be done to address the actual cost of health care.

Her question to the candidates: How would they open the door of opportunity for people with disabilities to have jobs? Would they think beyond those typically open to people with disabilities?

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Special education in the vitual world: New possibilities, new challenges

September 7, 2012 by JoLynne Lyon

photo of a teacher listening to a student

Much of what happens in the classroom can't be measured in academic terms.

Over the summer, the CPD’s Center for Technical Assistance for Excellence in Special Education organized training events for more than 2,300 special educators and administrators in Utah and Kansas.

A growing concern being discussed around the water coolers: Virtual Education.

“There are many legal questions related to virtual education,” wrote TAESE director John Copenhaver, “including how the least restrictive environment, the Individualized Education Program team and progress of the plan’s goals operate in a virtual setting.”

“For the past three years in my last district this was an area of great angst,” wrote Norm Ames, who was a school psychologist and special education administrator before coming to TAESE as the Associate Director of the Mountain Plains Regional Resource Center, which is part of TAESE.

“Parents and adult eligible students would call, wanting to withdraw from their current campus-based program and enroll in the virtual academy newly offered by the district. There are also other ‘public’ programs offered by the state and other districts competing for the full time equivalent funds.  We struggled trying to figure out how to treat the situation just from a logistical issue (district transfer?), let alone a free appropriate public education issue. How does a virtual or online program that accepts federal IDEA money provide interventions that lead to growth on an IEP goal, when there is no physical or logistical means to do so?”

To Marty Blair, TAESE’s associate director, the issue is about more than academic goals. “Some argue that on-line programs have built in monitoring systems that track student progress,” he wrote. “But IEP goals are not just academic. They may include behavioral, communication, social and community integration activities. What about the positive aspects of traditional education where students learn appropriate behavior and skills by observing each other? This “social or observational learning” is not available for students who are physically isolated from other students. Court cases to define the rights, responsibilities and roles of educators in this evolving education setting are few and far between.”

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The CPD salutes its 2012 graduates

May 9, 2012 by JoLynne Lyon

Congratulations to the CPD staff people, trainees and interns who graduated this year.

Congratulations also the the EEJ College of Education and Human Services, home to the CPD. Six of Utah State University’s top ten most popular degrees came from the college: Communicative Disorders and Deaf Education; Interdisciplinary Studies; Family, Consumer and Human Development; Human Movement Science; Psychology; Elementary Education Science.

Here’s a list of our graduates:

Graduate degrees:

Rafael Guttierez, Master of Science in Instructional Technology and Learning Sciences. He is the Hispanic Liaison for families receiving services in the Up To 3 program.

Melanie Peckham, Master of Social Work. She is a graduate assistant with the Up to 3 program.

Bachelor’s Degrees:

Jennifer Carman, Bachelor of Science in Social Work. She works as a bachelor practicum student in Up to 3.

Tressa Johnston, Bachelor of Science in Exercise Science. She works as a physical therapy assistant with the Up to 3 program.

Reyna Perry, Bachelor of Arts in Social Work. She works with the National Children’s Study.

Lauren Whatcott, Bachelor of Science in Social Work. She’s a bachelor practicum student in Up to 3.


One medical home and one school make a difference for a family

November 12, 2009 by JoLynne Lyon

Note: This article, written by a mother of a child with special health care needs living in Cache County, Utah,  first appeared in the Champions for Inclusive Communities’ November 3 newsletter. It is part of a series focused on the experiences of individual families as they work to obtain community-based services for their children with special health care needs.

The experience in the hospital last year when my 9-year old daughter was first diagnosed and treated with diabetes was very overwhelming. We left feeling unprepared and lacked confidence to deal with her treatment. Luckily, our family doctor – our medical home – helped us through this initial scary phase. He helps coordinate my daughter’s care with her endocrinologist to ensure she stays healthy. He is very good at communicating with my child, and he keeps in regular contact with us.

I also had an interesting experience with the school system not long after my daughter’s diagnosis. I left a message with her school saying that my 9-year old child had been hospitalized and diagnosed with diabetes and asked if we could meet to discuss possible assistance for her. A staff member later left me a message, essentially saying there was nothing they could do. I knew that the school district should provide a health plan for children who require assistance because I have worked with children from the Up to Three program and have been an advocate for families in our school district. I called the secretary back and asked her if my daughter was the first child with diabetes to attend the school. She said that in the past there had been a couple of children, but their mothers came with them to school to help. When I explained that I would talk to the school district’s nurse, her tone changed and she wanted to excuse herself for not providing me with the information I needed concerning a health plan and further assistance for my daughter. She also asked me not to involve the school district’s nurse.

My point is that I know I could have eventually received the support and health plan I needed for my daughter in that first school, but I could never change people’s attitudes towards parents and children with special needs. My daughter was already dealing with a life-changing event – an incurable disease, paired with the stress over not fitting in or being liked. I did not want to add eye-rolling, non-empathetic behaviors that would make her feel like a “chore” to anyone.

I decided to home school her for few months, but it did not work so well because I still was working, both away from and at home, making all the meals, cleaning, doing laundry, learning about diabetes, grieving, and helping other members of my family deal with the situation. I was tired! I could not leave my job because we needed the health insurance. So I prayed for help and was directed to Summit Elementary School.

My daughter and I were just visiting Summit one day when a lovely woman, who was so sweet and friendly, stopped in front of my daughter, shook her hand, looked into her eyes, smiled, and said “hello sweetheart.” My daughter said hello back and smiled and the lady hugged her. This sweet lady, the school secretary, asked both of us if we were interested in enrolling in Summit. I explained that I home school and that I was just looking and maybe signing up for a math class or a gym class. I explained that my daughter has diabetes Type 1 (very different from Type 2 diabetes). She said “me too” and showed her insulin pump to us. Then she added that in fourth grade there is a little boy with the same diagnosis whose teacher was well trained and had taught other children like my little one before. This little boy’s mother also teaches fifth grade at Summit and knows all about the condition. She has even done shots for other children.

Within two days my daughter was enrolled full time in Summit Elementary. Soon after, we had a meeting with the district nurse (who was well prepared for our family health plan), the school principal, her teacher-to-be (who is excellent), and the fifth grade teacher and mother who was and is an angel. This woman took the time to share a tear with me, she read a book called “Taking Diabetes to School” to my daughter’s classmates, she helped her feel welcome, and she also gave her a backpack equipped to care her insulin supplies along with a Teddy bear name Ruffes who has diabetes. My girl loves her bear and gives him shots. She comforts him and reassures him at night.

All of this has been so helpful. Everyone I have seen at Summit seems to be happy and seems to love their job. In the hallways, children are greeted and noticed by teachers and the two super secretaries keep good track of her blood readings. Summit Elementary gave us the support we needed.

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