Category Archives: Advocacy

1700 Miles in 28 Days: Father and Son Run for CP Awareness

By: Clint DeRoze

Via: Valley News Live

1700 miles in 28 days.

That’s the goal of Shaun Evans and his son Shamus.

Shamus was born with cerebral palsy, making it difficult for him to move freely.

When his parents first heard the news, they were worried about what this meant for their son going forward.

“We were concerned that he wasn’t going to be able to do everything. But whatever way we could make it happen so that he could participate as fully as he could, we were going to do that” says Shaun.

And Shamus did more than even they could imagine.

“He skis in the winter and he horseback rides and he plays adaptive sports and obviously running and we do triathlons together so Shamus continues to dream big and we work to make those dreams a reality,” says Shaun

Last year, Shaun and Shamus ran from coast to coast participating in 5Ks all along the way.

This year, they have a new goal.

Starting here in Moorhead, the pair plans to meet up with the Mississippi river and go all the way south to the Gulf of Mexico.

While Shaun has always been supportive, Shamus has been the driving force behind this initiative.

“Shamus is the man behind the mission. I’m the legs, but he’s the dreamer,” says Shaun

“He wants to be involved as much as he possibly can. Even though his legs don’t work like mine do, I have the opportunity to lend him my legs.”

Along the way, they’ll be handing out specially designed chairs so people like Shamus can be as active as they want to be.

The pair ran in support of Ainsley’s Angels, a national organization that helps pair disabled runners with those specially designed chairs.

Shaun and Shamus will now be on their way to Detroit Lakes for the next leg of their journey.

Man with Cerebral Palsy Cycles Around Ireland on a Modified Bike

By: Sherman Wright

Via Independent.ie

Ireland-Cerebral-Palsy-BicycleJack Thompson cycled from London to Liverpool and earlier this week he boarded a ferry to Belfast where he now plans to continue across the country.

He was met along the route by Balymena native Sherman Wright who was bowled over by the inspiring story.

Mr Thompson said he had just arrived in Ireland and he was expecting his route to become “a lot more hilly” ofver the coming days.

Mr Thompson said: “It’s wonderful and the people are lovely, they’re really friendly.”

Wright said he was particularly moved by Mr Thompson’s story because his nephew Darren also had cerebral palsy.

Asked how he deals with the long distances, Mr Thompson said: “I’m good with dealing with the pain, it allows you to go on forever. It took me five years of progression to get to that stage.

“I would like to get sponsored to do longer cycles. I would like to take the whole year and do big distances.”

What the ADA Means for People with Cerebral Palsy

By: Emerson Arehart

In 2008, the ADA was updated to expand the scope of the term disabled, which now includes people who have a condition interfering with major bodily functions.In the United States, the Americans With Disabilities Act (ADA) can play an important role in the lives of people with cerebral palsy (CP). Knowing your rights under the ADA is an important step in making sure CP doesn’t limit you or your child’s potential – especially at school and in the workplace. But how does the law actually work, and how can it help you or your children?

The purpose of the ADA is to eliminate discrimination against individuals with disabilities, and to make sure such individuals have the same opportunity for full participation, independent living and economic self-sufficiency as everyone else. To accomplish this, the law requires that certain “reasonable accommodations” be made for individuals with disabilities.

The ADA Broadens its Scope

In 2008, the ADA was updated to expand the scope of the term disabled, which now includes people who have a condition interfering with major bodily functions. Coverage is not specific to certain medical conditions, but rather is assessed on an individual basis. Most individuals with CP are covered by the ADA – if even one “major life activity” is affected. Major life activities include taking care of one’s self, communicating, thinking, performing manual tasks and being mobile. Since the 2008 update, any condition which interferes with the operation of bodily functions, including the immune and digestive systems, is also included.

Determining whether or not someone qualifies under the ADA must be done in a quick and reasonable manner – so employers and agencies don’t spin their wheels on making decisions. This is good news for families who previously faced major hurdles in proving their eligibility for the ADA.

Teaching Schools to Recognize Disability

The ADA is a general piece of legislation that applies broadly – including to public and private education. Many aspects relating to schools are covered by the Individuals with Disabilities Education Act (IDEA), a separate piece of legislation – but the ADA does apply to both public and private schools. For example, ADA protection requires that reasonable accommodations be made for students and parents with disabilities, including for events such as parent-teacher conferences, school plays, and graduation ceremonies.

For families of children with CP, this means they have the right to reasonable accommodations for their child’s disability – and, when it comes to assessing a child’s limitations, decisions have to be made quickly, rather than being drawn out into long and frustrating discussions about the nature of the child’s limitations and needs. And, best of all, CP families have the right to participate in and celebrate the milestones of growing up together, just like everyone else.

For more detailed information on how ADA applies to your family, consult these resources:

http://www.parentcenterhub.org/repository/ada/


http://adata.org/


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