Posts Tagged ‘ Easter Seals ’

What to Watch Tonight

Monday, June 24th, 2013

Up for a feel-really-good movie? Tonight on HBO, a documentary called “Miss You Can Do It” premieres. It goes behind the scenes of a beauty pageant in Illinois called Miss You Can Do It, which is for girls ages 4-25 who have physical and mental disabilities. It was created by a former Miss Iowa, Abbey Curran, who has cerebral palsy. No matter your feelings about pageants, I’m almost positive you’ll love the idea behind this one: For one weekend, every girl–no matter how she’s viewed by the rest of the world–is appreciated for her strength, her determination, and yes, her beauty. And these girls truly are beautiful, with a profoundly positive spirit. In the film, we meet several of the 2011 contestants and their families and get a glimpse into their everyday lives at home. I honestly can’t describe the parents in a way that does them justice–you have to hear them speak for yourself to appreciate how inspiring and honest they are. We learn what life has been like since their child was born and about the many health-related setbacks and victories they’ve had along the way. By the time we see footage of the pageant, where every girl is recognized and one is crowned Miss You Can Do It, you understand why an event like this is life-changing for everyone involved.

We first heard about the movie from our friends at Easter Seals, which has provided services for several of the contestants. Thanks to Easter Seals, children like 8-year-old Ali (pictured here during the “casual wear” portion of the contest), who has spina bifida, have gotten occupational and physical therapy, not to mention emotional support from the experts on staff.

Check out the pageant’s official site to learn more. It celebrates its 10th anniversary this year; there’s an entry form on the site in case there’s a future Miss You Can Do It in your life. In the meantime, watch this beautiful film tonight. And if you read this after June 24, DVR it–HBO will be airing it all summer.

 

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Join Parents Magazine for an Autism-Themed Facebook Chat on April 3

Tuesday, March 26th, 2013

On April 3, Parents and Easter Seals will host an autism-themed chat on the Parents Facebook page from 1 to 2 p.m ET.

Three experts will be available to answer questions; each expert will have their own status on the Parents Facebook page where readers can leave questions on the following topics specific to autism.

The experts are:

Lisa Quinones-Fontanez, who blogs for Autism Wonderland and frequently appears on the Parents.com blog To The Max, is mom to 7-year-old Norrin who was diagnosed with autism in May 2008. She will answer questions about her experience parenting a child with autism.

Georgina Peacock, M.D., MPH, a developmental-behavioral pediatrician, will join us from the Centers for Disease Control and Prevention’s National Center on Birth Defects and Developmental Disabilities (NCBDD) to answer questions about the early signs of autism and developmental milestones.

Patricia Wright, Ph.D., MPH, is a board certified behavior analyst and the National Director of Autism Services at Easter Seals. She will answer questions about autism treatment options and available services.

Join the Facebook event for the chat and remember to visit the Parents Facebook page on Wednesday, April 3 at 1 p.m. ET. We look forward to hearing your questions!

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Easing the Financial Burden for Special-Needs Families

Thursday, July 26th, 2012

There are a lot of great chronicles of life with a special needs kid (case in point: our blogger, Ellen Seidman, who writes about her awesome son on To the Max). The scenario is definitely familiar to lots of readers—more than 20 million American families have at least one member with special needs, and 1 in 88 kids has been diagnosed with an autism spectrum disorder, according to the Centers for Disease Control. But you don’t often hear about the financial side of the story. It can cost a bundle to raise a kid: according to a report from the U.S. Department of Agriculture, parents will spend more than $235,000 on children born today—and that doesn’t include college tuition. Though this figure might seem staggering, the estimated cost of raising a kid with special needs is much higher: as much as $3.2 million. Early identification can connect kids with resources that they need to lead happy, healthy lives, but the cost of caregivers, therapies, and treatments can add up quickly.

Massachusetts Mutual Life Insurance Company (MassMutual) has launched a new Facebook campaign to raise awareness about the financial challenges faced by parents of special-needs kids. For each “like” the video receives, MassMutual will donate $5 to the Easter Seals’ Make the First Five Count® program, which promotes early identification of disabilities and developmental delays. Visit the MassMutual Facebook app to get involved.

Image: House of coins via Shutterstock

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Is Autism Being Diagnosed Too Late?

Thursday, March 29th, 2012

That’s the question you can’t help but ask when you read the latest news from the Centers for Disease Control about the prevalence of autism. The alarming figure so many of us are familiar with–1 in 110 children have autism–is actually rising. The number is now 1 in 88. (And when you look at the number of boys who are found to have autism, it’s frighteningly higher: 1 in 54.)

The CDC’s data reports that the median (not average) age at which children are diagnosed with autism is 48 months. It’s 53 months for autism spectrum disorder/pervasive developmental disorder, and 75 months for Asperger disorder. Considering how greatly kids can benefit from early intervention, those ages are worrisome. Our friends at Easter Seals raise concerns: “We are completely missing the mark on early diagnosis, given that autism can be accurately identified at 24 months,” says national director of autism services Patricia Wright, Ph.D., MPH. “We have a lot of work to do in the area of early identification.”

To that end, Easter Seals’ Make the First Five Count initiative, with help from CVS Caremark, has launched a free online screening tool that gives all parents of children up to 5 years old access to Brookes Publishing’s Ages & Stages Questionnaires. This tool does not diagnose (that’s important to note), but it allows you to figure out whether your child is developing appropriately and help you pinpoint concerns you may want to discuss with your child’s doctor. It only takes between 10 and 20 minutes for you to answer the questionnaire and you’ll have results emailed to you within two weeks. Please share the link with other parents of the 5-and-under set, and we can help lower that too-old age of diagnosis.

Photo via Shutterstock.

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Does Your State Do Enough For Children Who Need Help?

Tuesday, November 8th, 2011

Today Easter Seals, the nonprofit provider of services for individuals with autism and other disabilities, released a report that outlines how well each state takes care of its youngest children with special needs. To determine this, researchers looked at how much money every state is given to provide early intervention services through the Individuals with Disabilities Education Act (IDEA), Part C program. This program offers free services for families of children under age 3 with developmental disabilities or delays, and in October it celebrated its 25th anniversary, but it’s never been fully or adequately funded. Just 2.67 percent of children are enrolled in the program, but early childhood experts estimate that anywhere from 13 to 20 percent of kids under 3 could benefit from its services.

Overall, the Easter Seals report has a sad bottom line: In almost every state, infants and toddlers with delays don’t get the help they need, and they may never catch up. I went straight to the page for New Jersey, since that’s where I live, and was discouraged to see that our state receives $809,000 less in federal funding for early intervention services than it did last year. Virtually every state has seen their funding drop, though some states, like New Hampshire, have the same amount, and California, Virginia, and New York have actually gotten slightly more funding through Part C in the past year.

Want to do something about this? Support Easter Seals’ Make the First Five Count initiative and sign the petition to Congress opposing any more cuts to Part C–in your state and everyone else’s. And if you think your child might benefit from early intervention, talk to your pediatrician, or find an Easter Seals near you–they are here to help.

Image: Multicolor Grunge USA Map, via Shutterstock

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What If Children Couldn’t Get the Services They Need?

Tuesday, July 26th, 2011

In watching the coverage last night of the debt ceiling, I bristled at a line in Speaker Boehner’s response to President Obama’s remarks: “If you’re spending more money than you’re taking in, you need to spend less of it.” Of course. Makes perfect sense. Except that in this context, “spend less of it” may mean cutting crucial programs and services for families, particularly those whose children have disabilities.

I thought of our friends at Easter Seals, the nonprofit health agency dedicated to helping children and adults with disabilities. Some of the staff visited the White House a few weeks back, and they brought a few of the families they’ve worked with. Their goal: to show the administration just how vital it is to invest in Medicaid, which provides health insurance to those with limited income. Medicaid funding is in danger of being severely slashed, and this would mean that millions of children may not receive the services they need to learn, grow, and thrive.

As Easter Seals President and CEO Jim Williams explained on the Easter Seals blog:

Medicaid allows kids with disabilities to be healthy, happy and independent. A girl needs physical therapy to help stave off the retraction of muscles that often accompanies cerebral palsy. It’s not unusual for a child with cerebral palsy to need physical therapy every week. However, too many private health insurance plans have arbitrary limits on physical therapy services, such as limiting a child to 12 sessions per year. After the 12 visits have been exhausted, families will realize that paying out of pocket to continue therapy is something that they simply cannot afford.

Medicaid allows parents of kids with disabilities to work. Yesterday, our families confirmed that as a result of the gains their children have made because of services paid for by Medicaid, parents can work outside the home for pay.

Medicaid is the only health insurance plan that has the comprehensive benefits that meets the needs of each child with a disability. Children with disabilities need access to the specific services currently available under Medicaid. The basic structure of Medicaid must be maintained.

Finally, Medicaid has already been cut and children with disabilities will be harmed by additional cuts to benefits or provider reimbursement rates. States have already cut Medicaid spending, by eliminating benefits and cutting reimbursement to providers. In many communities, the reimbursement rate is so far below the actual cost of a service making it extremely difficult for providers to continue to serve Medicaid enrolled children.

This whole debt ceiling discussion has left me feeling uneasy–helpless, even. But there is something we can all do. Make your voice heard and sign Easter Seals’ petition to Congress urging them not to cut funding for early intervention services. Click here to do it now.

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How To Spot Delays As Quickly As Possible

Monday, May 2nd, 2011

MFFC-White-Paper-CoverEach year, nearly 1.5 million children in the U.S. enter kindergarten with learning or health issues that have been missed.

I learned this staggering fact when speaking with experts from Easter Seals, which provides education, outreach, and advocacy to families affected by autism and other disabilities. It was startling to think of all of the children with unidentified challenges, and upsetting to know that with the right support, many of them could have caught up and entered school needing fewer services, or none at all. It’s a proven fact that early intervention is critical to strengthen a child’s intellectual abilities and communication and social skills.

This is why Easter Seals has created a new campaign called Make the First Five Count. Its goal is to guarantee that all children have access to early detection of possible delays and disabilities as well as access to services. A big part of the program’s success, of course, is based upon proper funding. Part C of the Individuals with Disabilities Education Act (IDEA) offers all families the possibility of free or lower-cost early intervention services, but the program has never had enough money to accomplish this. Take a minute to sign this petition urging your representatives and senators to block cuts to funding Part C—and to push for increasing the money that goes toward these services.

And on a more immediate level, if you want your child evaluated for any kind of health or emotional issue, speak to your pediatrician right away. (Not even sure whether your child should be evaluated? Easter Seals has provided a very clear breakdown of potential red flags here.) If you don’t have access to a pediatrician or specialist, call Easter Seals directly at 800-221-6827. They will happily walk you through the process of getting help. In fact, they estimate that they field well over 2,000 such requests each month. They want to hear from you.

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