The Bill That Could Better Our Children’s Lives

If you are an adult with disabilities, you are not allowed to have more than $2000 or you surrender your government benefits. I’ve known this fact for years, after I went to a rather depressing seminar about the future of benefits in our state. But there’s legislation in the works that would allow people with disabilities (and their families) to save up to $100,000 to pay for health care, education, transportation and other expenses, without losing Medicaid coverage. The act is called Achieving a Better Life Experience (ABLE), and a U.S. Senate hearing last week kicked off the bill’s progression through Congress.

Reports say that the bill is likely to pass in September, with hundreds of sponsors from both houses of Congress. Sara Wolff, 31, who has Down syndrome, testified before the Senate panel, noting how the ABLE Act could improve her life; per current laws, she is only allowed to earn up to $700 a month.

As she’s said, “Just because I have Down syndrome, that shouldn’t hold me back from achieving my full potential in life. I can work a full-time job, be a productive member of society, and pay taxes—but because of these outdated laws placed on individuals with disabilities, we hold people like me back in life.”

You can add your signature to the online petition to pass the ABLE Act.

Life With Down Syndrome
Life With Down Syndrome
Life With Down Syndrome

From my other blog:

The shocking realities of raising children with disabilities, and why society needs to know

What I think when I watch my child with special needs sleep

Let It Go, like you’ve never heard it sung

Image of piggybank via Shutterstock

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Tags: | Categories: To The Max

I Doubt Justin Bieber Faked Disability–But What Happened Still Hurt My Kid

Gossip and entertainment sites were buzzing this week about fan sightings of Justin Bieber at Disneyland last Sunday, in a wheelchair, cutting lines. Fans shared social media photos, including the above, of the star. There was speculation that Justin did this to cut lines. There were other photos posted of him the next day, standing perfectly fine.

Let’s start with this: Celebrities do not need to “fake” disability because they can easily get preferential treatment at theme parks, and pretty much anywhere they go. Justin’s done a bunch of dubious stuff in recent years, but it just seems ludicrous to think he’d need to do this. TMZ reported that he was nursing a knee injury from basketball and only sat in the chair for a short time. They also noted that Bieber gets escorted in and out of the park, to avoid attracting a crowd.

Not that countless people haven’t tried over the years to pretend to be disabled. My husband knew someone, as a teen, who’d rent a wheelchair to cut lines at theme parks. Last May, the news broke that wealthy parents were hiring people with disabilities so they could bypass lines.

That abuse is one key reason Disney recently changed its policies for accommodating people with disabilities to a system that’s similar to Disney’s Fastpass one, in which a park attendant gives you a return time for a ride. So the second, and more key reason, this whole story can’t be true is that people in wheelchairs do not automatically get access to rides, or any additional leeway. Only wheelchair users who have behavioral or sensory issues or other disabilities might qualify for the Disability Access Service Card. But that wasn’t always the word being spread online. As The Wire said, “Everybody knows that Disneyland allows its disabled guests to cut the lines at any rides that can accommodate them, so, you know, congrats to Justin Bieber for FINALLY getting an advantage in life.”

Right. As if having a disability is ever an advantage. If you have a kid with special needs then you know what a constant uphill battle life can be.

The media is ready to jump on Justin Bieber for any move he makes, but it seems like he didn’t deserve this—and neither did people with disability. Bad reporting like this hurts kids like my son, because it spreads the misconception that people with disability “get away” with cutting lines. Some of them, like Max, dorequire accommodations at theme parks. He has cerebral palsy and can’t stand for long periods of times. He gets scared of crowds. I know of other kids with special needs whose bodies can’t properly regulate temperature, and so they can’t wait for long periods in heat.

Make no mistake: Accommodating our children isn’t special treatment—it’s leveling the playing field so they can enjoy parks in the same ways that other kids do.

From my other blog:

What I think when I watch my child sleep

8 ways to include kids with special needs in programs, events, classes, camps, wherever

Good summer fun: a reading under the stars party

 

Image: Twitter/SwaggyJB3914

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Tags: | Categories: Cerebral Palsy, To The Max

This Girl Will Stop People From Aborting Babies With Down Syndrome

No matter whether you are pro-life or pro-choice, it seems like there’s one thing to be agreed upon: Parents-to-be who find out their baby in utero will have Down syndrome deserve access to solid information and support.

Thanks to Chloe Kondrich, 11, and her father, Kurt, that’s going to happen in Pennsylvania. The two are behind new legislation known as Chloe’s Law that requires health care experts to provide women who get a prenatal diagnosis of Down syndrome with factual and supportive information from the Pennsylvania Department of Health.

A former policeman, Kurt Kondrich has been a dedicated advocate since Chloe’s birth in 2003, when he and his wife learned that she had DS. He went on to get a masters degree in Early Intervention, and now works full-time on the Interagency Coordinating Council for Early Intervention. Chloe, meanwhile, is quite the media star—her dad notes that she’s been in magazines, books and newspapers, and regularly mingles with politicians.

Between 60 to 90 percent of women who receive a prenatal Down syndrome diagnosis end the preganncy, according to a 2012 meta-analysis of 24 studies in the journal Prenatal Diagnosis. The evidence suggests that termination rates have actually decreased in recent years. It makes sense that worried parents who get support may be less likely to abort a baby with Down syndrome.

Chloe, who attends Boyce Middle School in Pittsburgh, reads at the same level of her sixth-grade peers. She stood with Governor Tom Corbett as he signed Chloe’s Law. As State Rep. Jim Marshall (R), the prime sponsor for the act, said, “We hope this will raise awareness to parents who may get the diagnosis and be initially afraid of what the result will be. I think it will raise awareness that their kid is going to be different, not imperfect. There really isn’t anything more perfect than a happy child.”

From my other blog:

8 ways to include kids with special needs in programs, events, classes, camps, wherever

Let It Go, like you’ve never heard it sung

The shocking realities of raising children with disabilities, and why society needs to know

Baby Care Basics: What is Down Syndrome?
Baby Care Basics: What is Down Syndrome?
Baby Care Basics: What is Down Syndrome?

Image: Kurt Kondrich

 

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Tags: | Categories: Down Syndrome, To The Max

Mannequins With Disabilities Show The Beauty of Diversity

If you walked by the JCPenney in New York City, you might notice something a little different in the store window display. Something amazingly different. The five mannequins reflect physical diversity. Modeled after five real people, they include a woman in a wheelchair, a man with dwarfism and a double-leg amputee, along with a plus-size woman and a 6-foot-one-inch man. The mannequins are part of the store’s “When it fits you feel it” campaign, and were specially made for the TODAY show’s Love Your Selfie series, as Today.com reports.

As the parent of a child with disability, I love this. Traditionally, initiatives in support of body image (especially from the fashion industry) have to do with plus-size women. It makes total, wonderful, awesome sense to celebrate the physiques of people with disabilities, too. The more others can see people with disabilities in mainstream settings, the more they will come to think of them as being mainstream. Too often, that’s still not the case.

Model inclusion is also happening more frequently, slowly but surely, in advertising. Nordstrom’s July catalog, reports ABC News, includes a man with a prosthetic leg showing off running shoes and model Jillian Mercado in a wheelchair modeling boots (she made headlines this spring for appearing in a Diesel ad campaign).

The mannequins are on display through August. I think they should go on tour!

From my other blog:

8 ways to include kids with special needs in programs, events, classes, camps, wherever!

Let It Go, like you’ve never heard it sung 

On wondering what your child with special needs will do when he grows up

 

Images: Screen grab, Today video; Nordstrom catalog

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Tags: | Categories: Disability, To The Max

A Little Girl Gets A Second Chance At Childhood

This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs  over at Atypical Familia.

Kinsey Saleh was like any other feisty 5-year old girl who liked playing with her friends after school and eating ice cream. However, Kinsey’s mother, Nadine Morsi, said she knew “something was wrong” when Kinsey started experiencing shortness of breath, fatigue, decreased energy and unexplained bruising. When Kinsey complained of joint pain in her knees, Morsi insisted on a blood test. Both the doctor and Morsi were shocked when the test revealed Kinsey had developed a rare case of end-stage kidney failure. Kinsey’s condition was so critical, doctors feared the 5 year-old would suffer from a stroke or go into cardiac arrest.

Instead of playdates and ice cream, Kinsey’s childhood afternoons consisted of doctor’s appointments and dialysis. Kinsey needed a kidney transplant and was put on a waiting list. Kinsey’s mother, while a perfect match, was unable to donate due to congenital clotting disorder that made surgery risky. “I felt helpless,” Morsi said.

“I became a special needs mom overnight,” Morsi said. As a pediatric occupational therapist for the New York City Department of Education, Morsi was aware of the assistance her child could receive. Kinsey was able to attend school with the assistance of a full-time health paraprofessional.

Morsi admitted to wanting to keep Kinsey’s diagnosis a secret. But a close friend insisted Morsi share their desperate search for a kidney donor. Kinsey’s story was shared throughout Facebook and she quickly captured the attention of local media.

Morsi has used her experience to raise awareness and help others. Every day 13 people die waiting for a kidney. “We can all live on one kidney…please share your spare if you can,” Morsi urges.

Last month, nearly six months after her diagnosis, Kinsey received a kidney transplant. She is doing well and is gearing up for the 1st grade in September (without any special assistance). Kinsey can spend the remainder of the summer with outings to the park and the sweet promise of ice cream. Morsi is extremely grateful that her daughter has been given a second chance at a normal childhood. She recently shared: Every single day is truly a gift. Not a day goes by that Kinsey’s donor is not in our hearts for allowing her to be a kid again.

Keep up with Kinsey and her mom via Facebook - Kidney for Kinsey.

 

Catch up with my last post: How Not To Handle a Public Meltdown

And from my other blog:

Baby Care Basics: Choosing the Right Doctor
Baby Care Basics: Choosing the Right Doctor
Baby Care Basics: Choosing the Right Doctor

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