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Aspie Advocate: Helping parents and kids win the IEP game

August 27, 2010 in Insider Insight, Resources by Julia Roberts

Meet Carol Greenburg, Executive Director of Brooklyn Special Needs Consulting, and recently appointed East Coast Regional Director of Autism Women’s Network. I had the pleasure of meeting Carol at BlogHer (well, formally meeting her at a book reading for My Baby Rides the Short Bus, where I had this picture taken) and from the moment I saw her speak at the Autism session at BlogHer I liked her. She has a wicked sense of humor and her delivery and pause at just the right moment is a gift. She wicked smart, too. We’re proud and grateful she allowed us to interview her for Support for Special Needs.

Julia

Can you tell us a little about yourself and your family?

We have three humans and two cats in our house. (Which species outranks which should be obvious to those in a similar position.) My husband, John, is a marketing and publicity genius, owner of Soho Digital Art Gallery, the only gallery in NY dedicated to the display of digital art. He’s also an all-around great guy without whom I can’t imagine doing any of the work I do. I’m a professional juggler, uh, I mean mother, and constant irritating barrier between my eight-year-old and his ever more creative mischief-making. The hardest part of my job, other than housework, is keeping a straight face in the aftermath of his antics. Like my son I’m on the autism spectrum, which legally qualifies us as people with disabilities, but I prefer to think of us as a traveling consciousness-raising team using our autistic superpowers to defeat ignorance and serve justice. Makes trips to the supermarket more interesting. My little boy struggles with a a severe speech delay, and other autism-related difficulties, which he gracefully balances with song, dance, sports and most importantly laughter.

Can you talk a little bit about what you do? An anecdote to illustrate would be great.

As Executive Director of Brooklyn Special Needs Consulting, an advocacy and consulting company that serves Brooklyn and beyond. I walk families through the IEP process, helping them prepare for meetings and attending meetings with them. I consult with institutions about effective programs for special needs students and offer workshops to parents and professionals. As an advocate specifically, I try to help alleviate parent confusion, empower them as full members of IEP teams, and help school personnel to do the jobs they were hired to, but don’t always have the budget or staff-power do. Calm and imagination are an important part of my job, as many discussions about who gets what services can quickly escalate into fights. Fights rarely serve anyone. (Plus they make my ears hurt. Believe me auditory sensory issues can really ruin an otherwise perfectly good day.)

The best way to tone it all down is to acknowledge the wisdom, even if it’s only the most microscopic shred of wisdom, of the people who disagree with you. So when a bunch of teachers tried to force one of my clients, a fourteen-year-old interested in writing, to take what amounted to a study hall rather than the advanced English class he wanted, I picked one word out of the conversation that came up frequently. Self-advocacy. The teachers and administration kept saying this word reverentially and bundling it up in a way I still don’t understand with this kid sitting in a resource room with very little of the structure he needed and could get out of the English class he himself requested. “I couldn’t agree more about the importance of self-advocacy” I began, because that’s what I believe. “The folks from the school seemed pleased as punch. “And at the heart of self-advocacy is a student’s right to choose his own electives,” I continued because I believe that too. Now, my autism interferes with my ability to read facial expressions and body language, but even I know what drooping shoulders and frowns mean. In the end it worked out for everybody, though. I hear my client is thriving in his class, and the teachers are genuinely happy for him.

What was the inspiration for starting this business?

One of my closest friends was diagnosed with cancer a week or so after finding out her son was on the autism spectrum. Since my son got his diagnosis a year earlier and I had a little experience with the special education system We figured that if she could stand aggressive cancer treatment, I could handle a little aggressive advocacy on behalf her child. About three months into the process, I found myself getting him services that no one else had been able to get. That’s when, with my husband’s encouragement, I decided to attend some workshops and eventually turn pro.

Why do you think families have trouble doing this on their own?

A lot of parents are not fully aware of their rights, so they don’t have the proper information upon which to act. But even the best informed parents often need someone else to step in and offer some objectivity. I occasionally lobby for a service or two for my son, and of course I participate in his IEP meetings. But because he has a unilateral placement in a private school, we need to sue every year to get reimbursement for his tuition. We’re lucky to have a terrific lawyer. Now I don’t have a law degree myself, but even if I did, I wouldn’t represent my own family. Just as lawyers shouldn’t represent themselves at trial, I feel that advocates shouldn’t represent their own families at Due Process, unless there are no other options. And while it’s true that, when everyone is behaving cordially, parents really are the best advocates for their own children because no one knows those children better. When conflicts arise sometimes they need someone who isn’t as close to the situation to help them strategize and steer clear of unnecessary escalation. Due process is expensive, time and energy consuming, and inherently adversarial. Sometimes, unfortunately, it’s unavoidable and when it is I’m always happy to recommend lawyers I trust to represent families. But my preference is to try and keep everything in the conference room so that everybody stays out of the hearing room. That works out better for families and taxpayers and yes even for lawyers. No decent special ed lawyer wants to lose a case and set a precedent that might hurt children in the future.

What one piece of advice would you give any parent who has concerns about their child’s IEP?

It depends what the specific concern is. If the IEP lacks clear goals, you’ll need one strategy, but if the IEP is picture perfect, but not being enforced then you’ll need another. Overall, if you feel like your input isn’t heard or valued, you’re probably correct. A very casual disrespect of parent’s expertise in their own children is extremely common. It’s also legally and morally wrong. I recommend all parents set the tone write parent attachments that paints a paragraph-long picture of your child (motivators, special interests, observations of behaviors at home) and provides a list of his or her most urgent needs, ask to read them right after everyone introduces themselves at the IEP meeting.

If you’d like feel free to give us a link to a blog post you think would be helpful for people starting or in the IEP system and finding it challenging. And please provide us a link to the business site (didn’t know if you want someone to come onto the site in a particular area)

I don’t want to overwhelm anyone with information so I’m just going to give you two URLs that I heartily recommend . I worship at the altar of wrightslaw.com. They have a website with a search engine, and a terrific blog. I’m also a member of Council of Parents Attorneys and Advocates, which does require a modest fee to join, but I think it’s well worth the price. If you don’t find what you’re looking for there, you can always contact me at my website www.bklynsnc.com or just come visit to find out more about my work.

Tech disabilities bill passes another Congressional hurdle

August 20, 2010 in Special Needs News by Admin Dawn

The US Senate has followed the House of Representatives in passing a bill that would mean tech firms had to do more to make communications available to people with disabilities. As there are two separate bills, the two houses will have to negotiate an agreement to amend and back one of them before it can become law.

via Tech disabilities bill passes another Congressional hurdle – TECH.BLORGE.com.

Dedicated to helping people with disabilities soar

August 18, 2010 in Special Needs News by Admin Dawn

When Al Kaye introduced Carly Waugh to the handcycle, the former high school and college athlete ‘thought it was kind of lame,’ she recalls.

‘It was a pride thing,’ says Waugh, a former park service firefighter who was paralyzed after a fall while battling fires in Oregon.

Kaye next invited Waugh to a snow ski clinic hosted by the Innovative Recreation Cooperative, a program that Kaye founded at the Patricia Neal Rehabilitation Center.

‘I thought that part of my life was over, but I loved it,’ she says. ‘I was back out on that mountain, out there with able-bodied enthusiasts, and I realized I can do anything I want to do.’

via Dedicated to helping people with disabilities soar » Knoxville News Sentinel.

Ms. Wheelchair America crown goes to Alex McArthur

August 17, 2010 in Special Needs News by Admin Dawn

Alexandra McArthur, a Davidson College employee who lives in Charlotte, was crowned Ms. Wheelchair America 2011 Saturday in the finals of a weeklong pageant in Grand Rapids, Mich. Ms. McArthur was among 28 contestants from around the country vying for the title.

For the next year, Ms. McArthur will be a national spokesperson, working both here in North Carolina and elsewhere to educate people about disability issues and advocate for legislation, solutions and awareness. Her winning platform focuses on employment and improving the workplace for people with disabilities.

via Ms. Wheelchair America crown goes to Alex McArthur | DavidsonNews.net.

Campaign urges looking at those with disabilities

August 10, 2010 in Special Needs News by Admin Dawn

People with disabilities deserve respect. So look them in the eye.

That is the message behind a “Look Me in the Eye” campaign, organized by the Oregon Supported Living Program and Full Access, which launches today at 11 a.m. at the two organizations’ joint office building at 1240 Charnelton St.

“We’re encouraging people to go out on a limb of discomfort and open their arms to people who have for so many years experienced such grave injustices,” organizer Gretchen Dubie said.

Mayors from nine Lane County cities — Lowell, Cottage Grove, Oakridge, Florence, Creswell, Junction City, Veneta, Eugene and Springfield — have committed to signing a proclamation that urges citizens to acknowledge and embrace community members with developmental disabilities. Eugene Mayor Kitty Piercy will read the proclamation at today’s kickoff event.

via News: Local | “Eyeing respect” | The Register-Guard | Eugene, Oregon.

Did The Americans With Disabilities Act Hurt Some People With Disabilities?

August 5, 2010 in Special Needs News by Admin Dawn

The Americans With Disabilities Act, passed by a Democratic Congress with support from Republican Senate leader Bob Dole and signed by President George H.W. Bush, is widely regarded as a major bipartisan achievement, in the same rarefied category of near-universally admired legislation such as the Civil Rights Act of 1964. In the 2008 presidential campaign, Barack Obama and John McCain both proclaimed their support for the continuing enforcement of the ADA, which gives civil-rights protections to people with disabilities and guarantees equal opportunity for individuals with disabilities in places of public accommodation and government services.

But did the law, which has touched nearly every American’s life—more than 50 million Americans have disabilities, and if you’ve ever pushed a stroller through a curb cut or used a subway elevator you owe the ADA a thank-you note—actually do more harm than good? That’s the radical proposition advanced by some conservative and libertarian commentators in the wake of the ADA’s 20th anniversary last week.

via Did The Americans With Disabilities Act Hurt Some People With Disabilities? – Newsweek.

What are your thoughts?

US Labor Department’s Office of Disability funding for the Add Us In initiative

August 4, 2010 in Special Needs News by Admin Dawn

The U.S. Department of Labor’s Office of Disability Employment Policy today announced the availability of approximately $2.3 million in funding for the Add Us In initiative, which will fund up to four cooperative agreements with allotments ranging from $500,000 to $625,000 each. The initiative is designed to increase the ability of companies to employ individuals with disabilities, particularly businesses owned and operated by African-Americans; Asian-Americans; Latino or Hispanic Americans; members of federally recognized tribes and Native Americans; lesbian, gay, bisexual and transgender individuals; and women.

“This administration is committed to broadening job opportunities for all Americans, including individuals with disabilities,” said Secretary of Labor Hilda L. Solis. “The Add Us In initiative aims to help businesses develop effective, replicable models, strategies and policies to ensure people with disabilities have access to a broader range of employment opportunities.”

Eligible applicants are consortia having representation from each of the following four organization types: 1) An association of targeted businesses, a business association located in a target population community, or other similar entity; 2) a disability-serving organization; 3) a local workforce investment board or other organization with demonstrated experience in providing training and employment-related support services, such as a One-Stop Career Center; 4) and a youth-serving organization.

via US Labor Department’s Office of Disability Employment Policy announces $2.3 million in funding for… — WASHINGTON, Aug. 2 /PRNewswire-USNewswire/ –.

Three new laws to help people with disabilities

August 3, 2010 in Special Needs News by Admin Dawn

The 20th anniversary of the Americans with Disabilities Act was celebrated last week as we marked the progress we have made in two decades toward equal rights and full inclusion of people with disabilities in community life.

In New Hampshire, we not only looked back at our accomplishments but moved several steps forward, thanks to the work of the governor and Legislature, and of hundreds of tireless advocates.

Even as we celebrated the ADA’s anniversary, the governor signed into law three bills that protect the rights of people with disabilities. The new laws limit the use of restraint of children in schools and treatment centers, and they make hearing aids and treatment for autism more affordable.

via Three new laws to help people with disabilities – NashuaTelegraph.com.

Americans with Disabilities Act also applies to those with mental illnesses

August 2, 2010 in Special Needs News by Admin Dawn

This week, we celebrate the 20th anniversary of the Americans with Disabilities Act.The ADA is a broad civil rights law designed to provide a clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities.

Like the Civil Rights Act of 1964 that prohibits discrimination on the basis of race, color, religion, national origin, and gender, the ADA seeks to ensure equal opportunity for people with disabilities. It does not guarantee equal results, establish quotas or require preferences favoring individuals with disabilities over those without disabilities.

I am a person who experiences severe and persistent mental illness. I will not be cured. Although I am an advocate for recovery, I am not “in recovery” from my brain. I cannot abstain from “being bipolar” as one abstains from substance addiction behaviors. I am not defined by my illness, but it is a prism through which I experience the world. This is a fundamental part of who I am, as much as my ethnic heritage. It is a biologically based disease, like diabetes. I did not survive it, as some survive breast cancer. If I had breast cancer, I would receive substantially better health care and support services.

via Americans with Disabilities Act also applies to those with mental illnesses | newarkadvocate.com | The Newark Advocate.

AccessChicago is all about freedom for people with disabilities

July 19, 2010 in Special Needs News by Admin Dawn

Lilliana Lopez, 23, threaded her way through the aisles of one of Chicago’s premier trade shows, perusing a wide range of state-of-the-art products and services.

“I’m learning so much,” she said, pausing in front of a display at Navy Pier. “I see so many opportunities for my dreams.”

Lopez, a student at Wilbur Wright College on Chicago’s Northwest Side, could be any young adult trying to expand her knowledge and her network. But she was at AccessChicago, navigating one of the nation’s largest expos for people with disabilities from her wheelchair.

via AccessChicago is all about freedom for people with disabilities – chicagotribune.com.

Have you been to a special needs trade show? We’re sending Julia to one this fall! We’ll give you a heads up closer to the date to see if anyone wants to meet her there.

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