INFORMATION IS POWER - Special EDitions as resources

From Disability Rights Education & Defense Fund (DREDF)

December 2013
WORKSHOP SCHEDULE: Check our website to see and register for upcoming trainings. The next in–house training here at DREDF is Monday, January 13th, 2014 from 6 – 8:30.

Dear Friends and Family Caregivers,

Happy Holidays from the Education Advocates at DREDF! Like you, we care for and/or about children with disabilities, and understand how hard it is to stay on top of all the rights, laws, and rules for navigating the special education maze. This month, we've put together a handy guide to past issues to help you find the topics that are specific to your child's individual situation.

Preparing for a new year full of learning and growing for our children is our shared goal. Whether you are a caregiver living the day-to-day reality of getting help for a child with a disability, or a professional working on behalf of many such children, information really is power when it comes to effective advocacy.

We encourage you to explore our new website for many resources related to education access for children with disabilities, including links to all Special EDition newsletters we have produced. DREDF is working on multiple fronts nationally and internationally to improve the lives of people with disabilities, and it's important to remember that our children grow up to be adults who will need more than just education access to participate fully in our society. It's a work in progress, so check often for new and updated resources.

Read more HERE.

Despite Advances, Many Preemies Still Face Severe Disabilities

More babies born premature are surviving, but they are just as likely to experience serious disabilities, researchers say.

In two new studies comparing the experiences of children born premature in 1995 versus 2006, British researchers found that medical advances led to a 13 percent increase in the survival rate for babies in their first week after birth.

What’s more, when the kids were assessed around age 3, those born in 2006 were 11 percent more likely to have no disability at all.

However, the chance that children born premature in either year had developed some type of severe disability was virtually no different, according to the studies published this month in the British Medical Journal.

Read more of Michelle Diament's Disability Scoop article HERE.

The British Paraorchestra

IDEA—the Individuals with Disabilities Education Act

From National Dissemination Center for Children with Disabilities (NICHCY)

IDEA was originally enacted by Congress in 1975 to ensure that children with disabilities have the opportunity to receive a free appropriate public education, just like other children.  The law has been revised many times over the years.

The most recent amendments were passed by Congress in December 2004, with final regulations published in August 2006 (Part B for school-aged children) and in September 2011 (Part C, for babies and toddlers). So, in one sense, the law is very new, even as it has a long, detailed, and powerful history.

NICHCY’s website is full of information about IDEA. We are pleased to connect you with:

• Summaries of IDEA’s requirements, which shape what school systems do;
• IDEA itself—to read IDEA’s exact words, you can either download a copy of the law and its regulations, or read them here online;
• Guidance on IDEA from the Office of Special Education Programs at the U.S. Department of Education;
• Legal analysis that’s appeared in law journals;
• Training materials on IDEA that you can use to fully inform yourself and others; and
• 20 indicators by which the Office of Special Education Programs measures States’ implementation of IDEA.

Read more HERE.

Special Needs in the News

Children with Disabilities Get Mentions on Republican Stage

South Carolina State Chief Talks Federal Funding

British Paralympic Association distributes 'how-to' guide to media as part of drive to change perceptions

What's a Learning Disability, Anyway? Most Americans Confused

Reporting Live ... With Asperger's ... From Worrall Elementary School

BROOMALL, Pa. | No getting around it -- the news has an agenda in this suburb of Philadelphia. The stories are fun. The reporters are short. And most of the production team has Asperger's syndrome.

Read  JASON KANE AND VICTORIA FLEISCHER's PBS News Hour article HERE.

Watch Reporting Live With Asperger's From Elementary School on PBS. See more from PBS NewsHour.

Families Happy Despite Severe Needs

By Shawn Healey, Disability Scoop

Even with the severe disabilities associated with two rare chromosomal disorders, a new study finds that parents raising kids with the conditions say the experience is positive.

In fact, in interviews with 332 parents who have lived with children with trisomy 13 or 18 — two disorders marked by severe disabilities and a short life span — 97 percent said their kids were happy and enriched their lives.

The findings reported in the August issue of the journal Pediatrics come in sharp contrast to the predictions that families said they were offered from the medical community.

Parents indicated that they were told that their children would be “incompatible with life” and would lead a “life of suffering.” Some parents also said that professionals told them that having a child with trisomy 13 or 18 would “ruin their family or life as a couple.”

“Our study points out that physicians and parents can have different views of what constitutes quality of life,” said Annie Janvier, a neonatologist at the University of Montreal who led the study.

Researchers said they are hopeful that their findings will change the way that doctors communicate with families whose children are diagnosed with severe disabilities.

Feds Pledge More Focus on Outcomes for Students With Disabilities

Federal special education officials on Monday reaffirmed a pledge to focus more on how special education students are faring, rather than almost exclusively concentrating on whether states are technically upholding the Individuals with Disabilities Education Act.

At the IDEA Leadership Conference, Melody Musgrove, the director of the office of special education programs, shared trends on students' performance on state assessments and on dropout rates for students with disabilities, which have been largely unchanged for the past few years.

"We're proposing a new way to be held accountable in special ed," Musgrove said.

While federal monitoring of some specific issues has improved states' work in those areas, said Ruth Ryder, deputy director of the office of special education programs, focusing almost exclusively on compliance with the law hasn't made much of a difference where it counts: those test scores and dropout rates, among other measures.

"We've improved compliance," Ryder said. "It hasn't had the effect on results as we'd like to see."

For example, heavy emphasis on whether school districts are evaluating students for disabilities within 60 days of receiving parents' permission to do so and on whether children in early childhood programs for students with disabilities are referred to programs for school-age children by their third birthdays have improved states' performance in those areas, Musgrove said.

"Where we put our emphasis is what improves. We've seen this across many of our compliance indicators," she said. But, "we've got to pay more attention to student outcomes."

Instead of looking only at whether states help students with disabilities plan for life after high school, for example, federal officials could look at how students are faring in postsecondary settings, although that's unequivocally more difficult to capture.

That shift won't mean the federal government will back off from compliance with the law, Ryder said, although the agency won't visit states this coming school year as part of its efforts to monitor that compliance. It will instead spend the year revamping exactly how states will be judged. Any changes must jive with current IDEA regulations.

Read more of Nirvi Shah's On Special Education article HERE.

Text-to-Speech App Now Features Children's Voices

For the first time, children who cannot speak or who have speech impairments and use the text-to-speech app Proloquo2Go will sound a little more like how they might, if they could talk.

The app, for the iPad, iPhone, and iPod touch, allows children to tap words and icons and form sentences that the devices read aloud. Although about 60 percent of the app's user base has been children about 12 and younger, the voices provided by the app were those of adults. Other products have offered high-pitched versions of adult voices, or some that sounded like cartoon characters. This is believed to be the first using real children's voices.

But using kids' voices has been impractical: It requires finding children who can spend hours in the studio recording words and phrases, children whose accents aren't too regional, whose voices sound pleasant, and in the case of the British version, not too posh, said David Niemeijer, founder and chief executive officer of AssistiveWare, which sells his creation. Adults who are trained voice artists are simply easier to find and work with.

He said there was one driving force behind the addition of children's voices to his popular product, which has been downloaded tens of thousands of times. The children who use it, many of whom have disabilities including autism, Down syndrome, deafness, and cerebral palsy, already stand out.

When the device starts speaking "and the wrong voice comes from it, people might focus more on that, or think 'That's weird,' instead of what they're trying to say," he said.

Read more of Nirvi Shah's On Special Education article HERE.

Children with Disabilities Four Times as Likely to Experience Violence

By Nirvi Shah from On Special Education

A new report finds that children with disabilities are at about four times the risk of becoming victims of violence compared with children who don't have disabilities.

The authors said that while it's been the belief that children with disabilities are at greater risk of violence, this study is the first to quantify the prevalence and magnitude of that risk.

I've written about how students with disabilities are more likely to be bullied than their peers. And some especially disheartening stories like this one have crossed my desk. But I've never seen these numbers aggregated before in this way.

Read more HERE.

San Jose Giants 4 th Annual Disability Awareness Night Friday July 20, 2012

Disability Awareness Night will be an opportunity for ALL persons with disabilities, their families, care providers, and the community at large to enjoy a FREE baseball game while becoming informed on resources available for persons with disabilities.

Local service providers will be distributing FREE tickets to the game!


More information HERE.

AIN June Social Events

Information for June events and registration HERE.

Community Agency Highlights - Regional Center of the East Bay

Interview with Cynthia Sage, Case Manager at the Regional Center of the East Bay

What does your organization do for children of special needs?

We serve adults and children with developmental disabilities. We purchase various services to assist clients and families on a needs basis.

How can a person access your services (i.e. fees, application process, eligibility, ages, etc.)?

Contact the receptionist at 510.618.6100. (S)he will refer you to an intake coordinator.

How does your program support social interaction among all children, typically developing and with special needs?

Depending on the need of the client we directly fund various services or recommend agencies enabling our clients to function in the least restrictive environment.

Can you tell us what events/activities are happening this year? Dates?

Depending on the need of the client we directly fund various services or recommend agencies enabling our clients to function in the least restrictive environment.

Any suggestions for other community supports for parents to check out?

I always refer people to the Care Parent Network. Also check out the therapeutic recreation offerings from you town’s parks and recreation department.

What have you found most rewarding working with (name of org)?

Working with the 89 families on my case load. They are Everyday Heroes to me.

What is your favorite activity?

Yearly interviews with my families.

Contact Information:
Cynthia Sage
RCEB
(925) 691-2300 receptionist

Regional Center of the East Bay, website HERE.

Bullying and Youth with Disabilities and Special Health Needs

Children with disabilities—such as physical, developmental, intellectual, emotional, and sensory disabilities—are at an increased risk of being bullied. Any number of factors— physical vulnerability, social skill challenges, or intolerant environments—may increase the risk. Research suggests that some children with disabilities may bully others as well.

Kids with special health needs, such as epilepsy or food allergies, also may be at higher risk of being bullied. Bullying can include making fun of kids because of their allergies or exposing them to the things they are allergic to. In these cases, bullying is not just serious, it can mean life or death.

Get more information at Stop Bullying.gov

Cooking boosts skills of children with special needs

Before Gabrielle Kaplan-Mayer calls her son George to the dining room table, he is bouncing around the living room, walking back and forth, clambering onto the couch, pressing himself against her as she walks by, his hands a frenzy of motion, his mouth spouting agitated gusts of impatience.

Then, finally, it is time. Kaplan-Mayer escorts George, 9, and his sister June, 6, both decked out in colorful aprons lovingly made by Grandma, to the table, which is laden with apples, bananas, honey, grape juice, nuts and spices.
It is the eve of Passover and they will be making the traditional charoset, an activity both children have been looking forward to all morning. June is excited, too, but George, who was diagnosed with autism at age 3, is given to a more restless anticipation.

But as Kaplan-Mayer places an apple in his hand with a corer and divider, gently instructing him to push down on the center, the transformation is remarkable. He becomes quiet, taking to the task with an earnest concentration and simple joy that lights up his face.

“It really helps him focus,” says Kaplan-Mayer, noting that other steps in the recipe — such as cutting the apples, peeling and chopping a banana, crushing the nuts, pouring all the ingredients into a bowl and stirring them — all help with stimulating his senses and improving multiple skills, including those he will need to hold a pencil and write. And as he works with June, who is just as involved in every step, he’s learning even more.

Read more of Naila Francis' PhillyBurbs article HERE.

2012 "Catch a Special Thrill for Kids" - Coming June 16th At Lake Del Valle in Livermore

LOOKING FOR PARTICIPANTS, BOATERS, FIRST MATES, & VOLUNTEERS! Come spend just half of a day and contribute to a once-in-a-lifetime experience for youth with disabilities. C.A.S.T. is a memorable day of fishing that pairs a fisherman, and a child with disabilities along with their parent/guardian. Here’s a chance to teach a disabled child the joys of fishing! Eligible participants are children with disabilities, ages 7-14. Let’s gear up to help children with disabilities catch the BIG ONE! Sponsors include: Department of Water Resources, Cal Fire, Department of Fish & Game, Cal Boating, East Bay Regional Parks, Kelly-Moore Paints, Peet’s Coffee, Walmart, Oakland Raiders, Big 5 Sporting Goods, Bass Pro Shops, California Striped Bass Association, Raley’s Foods, and many other local businesses. More information HERE.

All In Need April Events

See the April event schedule HERE.

Wonder Dog

Karen Shirk operates a dog-training school in Xenia, Ohio, a charming antebellum village flattened twice by tornadoes. Dressed in baggy jeans and a man’s white T-shirt, swaying deeply as she walked, breathing through the metal button of a tracheotomy tube, she led me into her office at the far end of a brick building that once served as the local V.F.W. Hall. We waded into a crowd of bouncing ecstatic Papillons — toy dogs whose wide, silky ears inspired the breed’s name, the French word for “butterfly.” Though she stepped away only a moment earlier, the dozen little dogs rejoiced as if they’d feared never seeing her again: some spun in excitement, others leapt onto her desk and one tap-danced along the computer keyboard. They raised their pointed little faces and emitted high-pitched yips of hallelujah. When Shirk, who is 49, reached her desk chair, they settled on the floor at her feet, folded up their ears like kites and watched her. When she laughed, they took out their ears and waved them around.

As a young woman, Shirk pursued a master’s degree in social work and held a full-time job with cognitively impaired adults. She felt, she says, “carefree,” until the day she collapsed in respiratory distress and was rushed to an emergency room. Hospitalized for months, she received the grim diagnosis, at age 24, of myasthenia gravis, a rare neuromuscular disease. She left the hospital only to become a respirator-dependent patient in need of constant care.

“Why don’t you get a service dog?” a new nurse asked Shirk, six years into her illness. Supine in front of the TV, Shirk seemed unaware of the hour, day or month. A dog could offer mobility assistance, the nurse said, like opening a drawer and bringing clean socks. She seemed also to suspect that a dog might jump-start the life of this sad and lonely patient.

“How could I take care of a dog?” Shirk rasped. “I can’t even take care of myself.”

Read Melissa Fay Greene's New York Times article HERE. See video HERE.

Community Agency Highlights - We Care

Interview with Vi Ibarra, Project Coordinator, Autism Family Support Project for We Care:

What does your organization do for children of special needs?

We Care has been providing children with special needs the skills for a better start in life since 1960. We offer mental health and developmental services, as well as support for families with children with autism.

How can a person access your services (i.e. fees, application process, eligibility, ages, etc.)?

The Autism Family Support Project serves families with young children (up to age 7) with an autism spectrum disorder. A family can self refer by contacting me directly. There are no fees to join the program, and no wait list. We serve families from both Contra Costa and Alameda counties, and most of our events are held in and around Concord. Many of our events are free of charge, some require a nominal fee.

How does your program support social interaction among all children, typically developing and with special needs?

A primary focus of this program is to reduce isolation felt by parents. We do this by offering family social events throughout the year. By working with a venue to accommodate our children, parents have a chance to be out in the community surrounded by other parents who understand the challenges they may be facing. These social events are a great way for kids with autism and their typical siblings to interact. We further support parents through our monthly support meetings. Parents are invited to support one another emotionally and make connections that can carry over to their day to day life.

Each summer we offer a day camp for kids with autism and their typically developing peers. Social interaction is the focus of all of our activities at camp and we have a lot of fun!

Can you tell us what events/activities are happening this year?

This year we will offer Parent Education events, Family Nights Out, Parent-to-Parent support meetings as well as Summer Camp. Keep an eye on the calendar at www.WeCareChildren.org for dates, or contact me to be added to our roster to receive email announcements.

Any suggestions for other community supports for parents to check out?

For parent support and seemingly unlimited resources, I suggest Care Parent Network at www.careparentnetwork.org. They provide support to parents with children with all special needs, as well from early childhood through adulthood. They also have lots of information available in Spanish as well as bilingual staff members.

What have you found most rewarding working with We Care?

Most rewarding to me is that I get to join parents in their journey in raising a child with autism. As a parent of a child with autism myself, I know how important peer support is and it is an honor for me to be able to accompany other parents during their difficult times.

What is your favorite activity?

Once per year we have a weekend family camp at Camp Arroyo in Livermore. The Taylor Family Foundation offers the opportunity to us to spend a weekend at this gorgeous facility. Families spend the weekend together relaxing and enjoying one another in a safe, supportive environment. I see so many smiles during this one weekend!


Vi Ibarra
Project Coordinator, Autism Family Support Project
vibarra@wecarechildren.org
(925) 671-0777, ext 14
Website Here

All in Need, Respite Event-Saturday, February 18

What: All in Need, Respite Event
Where: Christ Community Church, 1650 Ashbury Dr. Concord, CA 94520
When: Saturday, February 18th at 5:30pm to 8:30pm
Cost: $20 per child and $45 max
More details HERE.