Category Archives: Advocacy

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/


Camp Smiles Gives Kids with Cerebral Palsy New Hope

By: Anita Howell

This isn’t just an article about a new camp, cerebral palsy, or Down syndrome. I pray that it is an article that stirs hope, courage, passion, and faith.

A Phone Call When I Needed It

The other day, as I dashed in and out of the rain and darted up the stairs, I was stopped in my tracks by the Camp Smiles sign. It symbolized a dream that started on one of the toughest days of my life. That day I sat on the couch holding our 10-year-old son, Ryan, who was exhausted and limp from the toll a rough seizure and Diastat had taken on his body. I wasn’t much better. But there, at my lowest point, I received a phone call that would stir my hope.

It was Dr. Jeanne Cobb from Coastal Carolina University’s Literacy Lab. The week prior, I had called her to discuss the possibility of Coastal Carolina University hosting Camp Smiles, a summer day camp for children with cerebral palsy.

I began to tell Dr. Cobb about Ryan’s long, lonely summer and how excited he was to see his friends again. As the children began to speak to Ryan, he became so excited that he nearly rocked his little wheelchair across the room. Fortunately for Ryan, his equipment man has strategically placed springs in his chair for his bouts of excited rocking.

I also explained that there were no programs for children with such significant disabilities in our county. To my surprise, Dr. Cobb said, “I feel like we are placed on this earth to help others. I would love to be a part of this and will see if we can pull a team together to assist.”

Bringing Camp Smiles to Life

Since that day, with Dr. Cobb’s support, Dr. John Delport and Dr. Nanci Howard have diligently worked at developing the camp structure, staff, and curriculum. During the planning phase we decided to modify the camp to include children with Down syndrome. These two groups of children really have no other place to go for fun in the summer. And they are often drawn to each other, making them a perfect match for our camp setting. It is truly heartwarming to see them work together.

As Dr. Delport and Dr. Howard have been busy working out the details of the camp, I’ve been out in the community seeking funding and bringing awareness to Camp Smiles. As I type, we have pledges for approximately half of the $65,000 needed for the camp to run the entire 6 weeks.

Camp Smiles will make it possible for the children to avoid regression, have fun, and socialize. For the families, who are torn between caring for their children and providing for them financially, Camp Smiles will be the much needed summer help when schools are closed.

Please support Camp Smiles and share our pages with your church, friends, co-workers, employers, and family. They are:

www.facebook.com/campsmilesccu

www.gofundme.com/campsmilesccu
 
 
Please don’t hesitate to call or email with any questions. My cell number is 843-254-2804 and my email address is anitahowell2015@gmail.com
 
 
Camp Smiles Needs Your Help for Cerebral Palsy
 
Anita Howell has been married to Wes since 1988. They have a daughter named Emily who is currently attending college, and a son, Ryan. She writes, “Though I have never been a medical, research, or legal professional, Ryan’s stroke at birth has thrown me into the deep end of the pool for all of it. It was quite overwhelming in the early years; however, God has made Philippians 4:13 very real throughout my journey.”

The Power of Social Media to Affect Disability Policy

Power of Social Media

Raising a child with a disability can sometimes feel isolating. Parents frustrated with policies and laws affecting their child may believe that there is little they can do to make their voices heard. In today’s Internet culture, it’s easier than ever before for the disabled and their families to come together and affect change on a large scale. Social media activism has the power to bring together individuals to present a united front against discriminatory practices.

In London, a Twitter-driven campaign known as “We are Spartacus” has almost single-handedly put the issue of cuts in disability living allowance back in the spotlight. The viral campaign, orchestrated by a small group of disability advocates, had an immediate impact on the media and even resulted in lost votes in London’s governing body. The campaign relied on the power of social media to give power to tens of thousands of people who are typically excluded from mainstream media and politics.

Closer to home, 17-year old Carly Fleischmann from Toronto recently sparked a social media storm when she shared her experience on an American Airlines flight with her nearly 26,000 Twitter followers and 42,000 Facebook fans. The girl, who is nonverbal and relies on an iPad to communicate, was required to stow her tablet for takeoff and landing. Her supporters flooded the American Airlines Facebook page with messages demanding an exception to their electronic device policy in cases involving disabled passengers. Fleischmann is currently working to get a meeting with representatives of American Airlines and the Federal Aviation Administration to discuss the matter.

There is certainly no shortage of causes for disability advocates to rally behind, including cuts to special education funding, access to care, and equality in education and employment opportunities. By allowing individuals to unite their voices behind a common cause, social media puts the focus on issues that might otherwise have been overlooked by mainstream media. Visit the CP Family Network Twitter or Facebook pages to connect with other CP families and make your voice heard!

 

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