News

On April 11th, 2016, the Wisconsin Department of Health Services has released a summary of the changes made to the Family Care/IRIS 2.0 Concept Paper based on feedback received from public hearings, testimony, and stakeholder meetings regarding the draft of the Concept Paper.

Whether they admit it or not, most people daydream at least for a few minutes each day.  We daydream about lots of different things.  I’m not sure this is common among people with disabilities or not, but, sometimes, I catch myself thinking about the “what if” question. What if I didn’t have Cerebral Palsy?  How would my life be?  I candidly admit those questions go through my head too often.  Questions like those run through my head especially when I’m having multiple problems solely related to having a disability which are preventing me from a “normal” life.  I also find myself pondering about those thoughts when I witness friends and family members reaching significant milestones in life that will likely never happen for me.  I hate when I catch myself asking those questions because it does me absolutely no good.

Cerebral Palsy (CP) is a condition that appears in infancy or early in childhood that affects a person’s body movement, muscle coordination, and balance.  It’s often caused by a lack of oxygen to the brain. Due to complications during birth, I was without oxygen for eight minutes. At one point, I was given my last rights by a minister and was even pronounced dead. Doctors were able to revive me, but due to the lack of oxygen, I was diagnosed with Athetoid CP when I was three months old.  CP isn’t a progressive condition—meaning it doesn’t get worse (or better) with time.  Treatments, such as therapies, help enhance the person’s quality of life, but, currently, there isn’t a cure for CP.

I’ve always been thankful that I’ve never experienced life without limitations as opposed to acquiring a disability after living life without one.  I was born with CP, so I’ve never known life without it.  I think it would be much harder to acquire a disability after living without one for any amount of time.

In many of the Facebook groups and online disability forums I belong to, a common question that frequently comes up for discussion is, “if a cure became available for disability, would you take it?”  Unlike many people, I think I would take the cure for CP.  Many people say that their disability is a part of who they are.  I respect that, but, for me, that’s not the case. I’ve always said yes, I accept I have CP, but it doesn’t define the person I am.  Of course, I’d have to take the risks and side effects into consideration, but, for that reason, if a magical cure became available, I think I would take it.

Albeit, “being cured” is almost impossible to even fathom, but admittedly it’s something that does cross my mind fairly often. I imagine who I’d be, where  I’d be, and what I’d be doing if I didn’t have CP.  Of course, my imagination is likely not very realistic because I dream I’d have the perfect life, but I know that wouldn’t probably be the case—nobody has a perfect life.

Although, I’m not an overly religious person, I do believe that there’s a reason I was brought back to life after eight minutes. I don’t know that I’ll understand the full reason as to why I was revived and given extra challenges while I’m here on earth, but I believe someday that I will find out. I’m slowly finding out that two of my purposes in life are to advocate for people with disabilities and to encourage others to persevere no matter what life hands you. I’m sure that there are more purposes, but those two seem to be most prevalent.

When those “what if” and “why me” questions start floating around in my head, I try my best to think about my purpose in life.  It’s definitely not easy to do, but I realize that I may have a different purpose in life than many of my acquaintances.  I’ll likely never do things like get married or have kids, but that’s ok because I’m meant to do other things like educate people about disabilities and encourage them to never ever give up.

Science is getting closer and closer to finding cures for many diseases and conditions.  Maybe not in my lifetime, but, someday, I believe there will be a cure for CP.  Until then, we have to try to make the best of the abilities we do have, and, live life to the fullest. 

"I'm a person that just happens to have a disability, but that doesn't mean I'm a disabled person." ~Marilyn Gould

***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.

Disability providers are warning the federal government that a proposed rule that would require overtime pay for people that support those with disabilities in the community would likely force cuts in services. Providers say this would drastically impact services as major staff adjustments would need to be made.  

The Department of Labor is considering the feedback as it works on developing a final rule which is expected by July. Learn more about it here.

We thank the Great Lakes ADA Center for providing us with the following information about how the Federal Communications Commision (FCC) is proposing changes to expand the availability of  video described programming for people who have visual impairments.

On April 1, 2016, the FCC released a Notice of Proposed Rulemaking (NPRM) proposing to expand the availability of video described programming.  Video description makes video programming accessible to individuals who are blind or visually impaired by enabling audio-narration to describe key visual elements of a television program during pauses in the dialogue.   

The FCC proposes the following key rule changes:

• Increase the amount of described programming on each included network carried by a covered broadcast station or multichannel video programming distributor, from 50 hours per calendar quarter to 87.5 (a 75% increase);
• Increase the number of networks required to provide video description from four broadcast and five non-broadcast networks to five broadcast and ten non-broadcast networks;
• Create a “no-backsliding” rule, so a network would remain subject to the rules even if it is no longer one of the top five or top ten ranking networks; and
• Require video programming distributors to provide proper customer support contacts in order to improve consumer access to video description. 

The NPRM also seeks comment on other matters, such as a potential requirement for described video-on-demand programming, a dedicated audio stream for video description, and a change of terminology from “video described” to “audio described.” 

Comment and reply comment due dates will be announced once the Notice is published in the Federal Register. 

Links to the News Release:

Web:     https://www.fcc.gov/document/fcc-proposed-expand-video-description-rules

Word:    https://apps.fcc.gov/edocs_public/attachmatch/DOC-338677A1.docx

PDF:       https://apps.fcc.gov/edocs_public/attachmatch/DOC-338677A1.pdf

Text:      https://apps.fcc.gov/edocs_public/attachmatch/DOC-338677A1.txt

Links to the NPRM:

Web:     https://www.fcc.gov/document/video-description-expansion-nprm

Word:    https://apps.fcc.gov/edocs_public/attachmatch/FCC-16-37A1.docx

PDF:       https://apps.fcc.gov/edocs_public/attachmatch/FCC-16-37A1.pdf

Text:      https://apps.fcc.gov/edocs_public/attachmatch/FCC-16-37A1.txt

For more information about the NPRM, contact Lyle Elder at lyle.elder@fcc.gov  and 202-418-2365, or Maria Mullarkey at Maria.Mullarkey@fcc.gov and 202-418-1067. 

Many times, family members take off work to care for loved ones with disabilities.  Congress is proposing a bill that would ensure that they won't lose out on Social Security retirement benefits for doing so.  Under the bill, family members who leave their jobs or limit their hours to care for a relative for at least 80 unpaid hours per month would continue to receive credits with Social Security for up to five years.

Read full article here.

Due to a new report that shows that adults with disabilities who receive benefits often need help managing their money aren't receiving  proper assistance, Social Security is being urged to redo the representative payee approach.   The report found that too few people who need assistance managing their finances have a representative payee. It suggests that Social Security develop new policies to help solve this issue.

Read full article

Wallethub.com recently released a list of the best and worst cities for people with disabilities for last year.  Multiple factors were considered for the rankings.

Find out which two Wisconsin cities made the list of the best cities!

A new bill is being proposed that would allow people who care for people with disabilities to receive a tax credit.  The bill is aimed towards family members who care for loved ones.  The credit would be meant to offset costs for caring for individuals with long-term care needs.  Caregivers would have to meet certain qualifications to receive the credit.

Read full article here.

Toyota is working to develop a neat device for people who have visual impairments.  This wearable device willl provide people with information about their surroundings that other devices are unable to.   It will have  cameras that detect surroundings and then communicate the user via speakers and vibration monitors.  The user will also be able to interact with the device via voice recognition and buttons.

Click here to learn more and watch a video about the device.