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A Day Without Lawyers

June 18, 2012 in Featured, Yes, I Am a Special Needs Parent… by Robert Rummel-Hudson

A few months ago, I wrote about the legal fight going on between the innovators of Speak for Yourself, a augmentative speech app for the iPad, and the Prentke Romich Company and Semantic (“The Iceman Cometh, with his Legal Team”). I quickly described the situation at the time like this:

Okay, let’s wander into the weeds for just a moment. Last year an AAC app called Speak for Yourself was released that got the attention of a lot of us because of its use of the LAMP (language acquisition motor planning) concept. This focuses on a core vocabulary using consistent motor patterns that do not change. It is the basis of successful language systems like MinSpeak, licensed by the intellectual property company Semantic Compaction Systems for use in devices produced by the Prentke Romich Company, under the brand name Unity. It is these two affiliated companies, Semantic Compaction and PRC, that are attempting to sue the aforementioned pants off the developers of Speak for Yourself.

Well, things have changed a bit. Despite the fact that the parties have yet to have their day in court, Apple has pulled Speak for Yourself from the iTunes App Store. (PRC released a statement that begins with “Last week Prentke Romich Company (PRC) learned that Apple removed a language assistance app from its iTunes® store pending the outcome of a patent infringement lawsuit filed against the company that developed the iPad® app…”, but a careful read of the legal documents shows that Apple made this move at their request. Weasel words. Gotta love ‘em.) If you don’t already have Speak for Yourself on your iPad, you are out of luck, at least for the time being. If you do, you won’t be able to receive updates or remote fixes, and when Apple upgrades the operating system for the iPad later this year, there’s no guarantee the app will still work at all.

This is obviously a concern for users who are using the iPad and Speak for Yourself as their primary mode of verbal communication. Including, as of this summer, my daughter Schuyler.

There has been a great deal written about this situation. If you’re interested, the first, best place to go is this blog post by Dana Nieder, “The Silencing of Maya”. Dana has been the go-to person on this story, and she’s compiled a comprehensive list of links to the story as well. If you want to know more about this, that’s where you should go.

Now for my take on this, for whatever it might be worth.

There has been a great deal of discussion as to the validity of PRC’s claims against Speak for Yourself, and in a sense, it makes sense for everyone, particularly PRC and Apple, to let a court of law settle those claims. In a very real sense, however, that outcome is ultimately of limited relevance. As things stand right now, everyone loses.

Speak for Yourself loses because their product and their company dies if no one can buy it. Their clients obviously lose a tool that works, and that is very much not a small thing. Apple probably doesn’t lose, to be honest. We tend to think of the iPad as a major component in the disability world, but it’s easy to forget that the opposite probably doesn’t hold true. Apple probably sells more iPads in countries that don’t even have electricity than they do to users with disabilities. Our poor opinion of their business practices isn’t keeping Apple executives up late at night.

But most of all, PRC loses. They can win this court case, they can squash Speak for Yourself and get everything they seek in this situation, but the fact remains that with every story that runs in Time and on CNN and the Huffington Post, they are introduced to thousands of people who know nothing about their good work or their mission statement or their hundreds of dedicated professional employees. No, PRC is being introduced to thousands of people who will now and forever more know them only as “the big corporation that screwed over that poor cute little disabled girl”. That’s the kind of thing that leaves a mark. We can (and will) continue to argue about how accurate that public perception may be, but it’s irrelevant.

It’s irrelevant, and I suspect PRC knows it. I think they might have painted themselves into a corner, trapped by their own poor PR decisions, and they don’t know how to get out of it.

There is a way out, for everyone. The parties involved can take a step back and consider how they might come together and join forces. Under the auspices of PRC and the community of Unity users, Speak for Yourself and its developers would discover a credibility and a world of users that they would be unlikely to achieve on their own. PRC would finally be able to repair some of the public relations damage they’ve sustained and would grow their family. They would solve the very real technical problems involved with breaking into the consumer electronics market without a great deal of development skill. That’s no small consideration for PRC; frankly, their early efforts with iPad app programming has bordered on embarrassing. On their own, I don’t think PRC could release a solid MinSpeak app any time soon even if they wanted to. And perhaps most of all, PRC would benefit from a kind of evolution of their language system. One of the things I’ve been hearing expressed quietly here and there, and it’s something I agree with, is that in its use of a single representative symbol configuration, Speak for Yourself probably represents an improvement on Unity. PRC has a chance to benefit here, if they can work out a collaboration or even a merger with Speak for Yourself.

Will this happen? Frankly, I doubt it. Speak for Yourself’s team seems committed to fighting this fight, and rightly so, and PRC is showing no sign of backing down. But if all the parties involved could just get together in the same room for a Day Without Lawyers, this whole horrible state of affairs might just have an ending that doesn’t leave anyone feeling taken advantage of. Kids like Maya and Schuyler least of all.

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Be sure to check out Quinnlin’s journey with special needs and a special friend at Build-A-Bear Workshop‘s blog!

My Great Story Campaign for Mother’s Day

May 8, 2011 in Featured, Featured Group, From Julia by Julia Roberts

A Forum to Share Her Story

NDSS & The My Great Story Campaign join together to raise awareness for Down syndrome in celebration of Mother’s Day.

Today, Mother’s Day 2011, the National Down Syndrome Society (NDSS) will celebrate the accomplishments and achievements being made by people with Down syndrome by honoring their mothers. The My Great Story (MGS) public awareness campaign seeks to ignite a new way of thinking about people with Down syndrome by collecting inspirational stories told by people with Down syndrome and their family members, friends, colleagues, and many others. NDSS has added a new section in honor of Mother’s Day. Participants share a story about their mothers, grandmothers, sisters, aunts, cousins or friends who have a son or daughter with Down syndrome. Anyone can comment or vote on the stories already in the collection. NDSS invites you to cover the MGS campaign, post, tweet and blog about it, and promote reposting, retweeting and more sharing amongst your audience.

NDSS also invites you to watch the two MGS Celebrity PSAsthat star TV Hosts Meredith Vieira and Nancy O’Dell and post them to your media outlet’s website. Vieira’s dedication to the MGS campaign stems from her relationship with her son, who has worked as a camp counselor for people with Down syndrome, and O’Dell was drawn to campaign through her fond memories of her mother’s sister, who had Down syndrome. Both Vieira and O’Dell have also submitted stories to the campaign that speak to their experiences.

Down syndrome is the most commonly occurring genetic condition, in which the individual has a third copy of the twenty-first chromosome. One in every 691live births is a baby born with Down syndrome, and it is the most commonly occurring chromosomal condition. People with Down syndrome attend school, work, participate in decisions that affect them, and contribute to society in many wonderful ways.

People with Down syndrome are living longer than ever before. The life expectancy of individuals with Down syndrome has increased dramatically in recent decades – from 25 in 1983 to 60 today. Children with Down syndrome are often fully included in social and educational settings and increasingly go on to graduate high school and attend postsecondary education programs. While placement in the workforce remains a struggle, the situation has improved and adults with Down syndrome have attained a variety of positions, bringing enthusiasm, reliability and dedication to their jobs.

We encourage you to get involved and help NDSS and mothers of people with Down syndrome everywhere to raise awareness for people with Down syndrome.

About My Great Story

MGS was created pro-bono by NY based Ad Agency, Pedone. After 14 months of market analysis the Pedone team developed a campaign in an effort to shape the future for all people with Down syndrome. The online story book was developed by CT based Interactive Agency York and Chapel, who spent over 12 months developing the user friendly technology, sophisticated design and esthetics, and incorporation of the spectacular print ads shot by Zachary Scott. To date, over $5 million has been donated in national and regional ad space and services. The campaign has been seen by over 175 million people across the country and featured in media outlets such as Allure, Fortune, Golf Digest, The New Yorker, Newsweek, Time, Vogue and Wired, among other noteworthy outlets. To learn more, visit www.ndss.org/stories

About NDSS

The National Down Syndrome Society is a nonprofit organization representing the more than 400,000 Americans with Down syndrome. The mission of NDSS is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome. The National Down Syndrome Society envisions a world in which all people with Down syndrome have the opportunity enhance their quality of life, realize their life aspirations, and become valued members of welcoming community. NDSS has over 350 affiliates nationwide. To learn more, visit www.ndss.org.

Adjustments in Special Needs

February 23, 2011 in Featured, From Julia by Julia Roberts

We’ve recently been trying to figure out what we’ll do with our son for 6th grade. Well, that’s not exactly true, we’ve been thinking about it for about a year. Sixth grade is still month away but with private schools needing to know by April 1ish we needed to start looking in January.

We have a good option for our public school. It’s large though. The director of special ed is a lovely woman who came to our elementary school to meet with us and discuss our son’s IEP/needs. She didn’t see any reason why they couldn’t serve him there. We also visited a private school (to the tune of $22,500/year) that is for students with learning differences. My son had a lot of anxiety over our discussions and it manifested itself in self hatred talk and thoughts of harming himself. It was with 100% certainty that I knew the root of the anxiety.

Anxiety is a tricky thing in our world. With delays, mental health issues and the fine balance of keeping things from exploding at any given time I thought it’d be good for get him over to the middle school to see what it was like. He was  resistant to going to a private school away from kids he’d know but after visiting the large school he’s open to another school choice. When we left the building he said, “No, it’s too confusing.” When I told him one of the schools we are looking at has just 8 kids in the 6th grade he smiled and said, “Yeah, I’d like a small class like that.”

He obviously needed to see it to adjust his thinking he had to go to the school where most of his friends will go. I still think he could but I’m not sure he’d flourish. He’d survive it but not without unique challenges of being different in a school of 400+ 6th graders. We’re still searching and I’m sure we’ll come up with something because we just will.

We’re a resourceful bunch, special needs parents are, aren’t we?

We have a world of adjustments we make from the second we hear of an issue/diagnosis to selecting where we’ll live to making decisions of what to push for and let go of with educators, friends and family. We’re constantly making adjustments. I know when you have kids you know you’ll have adjustments. Add in the special needs factor and it just makes things more complicated.

I am not sure when I realized my life would be about making adjustments about everything…including a style of parenting that isn’t necessarily 2nd nature, maybe a year into learning about the kids recessive polycystic kidney disease. When things are stable and moving along I forget the amount of adjustments we have to make nearly everyday. Adjustments have become so much a part of what I do, it hits me when we have a big adjustment.

Like middle school. Middle School + Special Needs = ADJUSTMENT. In a big way. I’m not ready for it but with special needs we don’t really have time to get ready, do we?

What’s your latest adjustment relating to special needs?

Everything You Need to Know About Your Child’s IEP

August 6, 2010 in Ask the Special Ed Lawyer by dianaglick

IEP Basics

When people reference your child’s IEP, they may be speaking about the meeting (“Are you going to the IEP today?”), the document (“Here is your copy of the IEP.”) or the process as a whole (“Your child may need an IEP.”). There is also an IEP team that is the decision-making body for your child’s services and supports. Because this term seems to be everywhere you turn, you’ve probably already guessed that the IEP process and the document generated by this process are the basis for your child’s experience in special education.

I’ve discussed the general IEP process in my prior columns, starting with the initial assessment. Remember that the legal obligation of the school district is to provide “FAPE”—a free appropriate public education—to students who are eligible for special education. Once the eligibility determination has been made, the District must offer whatever combination of placement, services and supports that are necessary to allow children with disabilities a basic floor of educational opportunity. While the District and parents may agree that the child is eligible for special education, there may be significant differences of opinion regarding the child’s placement, service and accommodations. These are the issues that are worked out through the IEP process.

The IEP Team

There are a few main points to remember about the IEP team. First, as a parent, you are an integral part of the team and should be involved in all the major decisions during the process.

Federal law also requires the presence of the following team members at the IEP meeting: your child’s mainstream teacher, at least one special education teacher and/or support professional (such as a speech-language pathologist or occupational therapist), and an administrator with decision-making power. The presence of the administrator as key—you want to make sure that someone who can offer special education services on behalf of the District is present at the meeting.

The IEP Meeting

KindergartenerSometimes, parents are intimidated by the committee of experts facing them in the meeting (those kid-sized chairs don’t help either!). I try to empower my clients and remind them that they are the parents—who knows their child better? No one! It’s always important to listen to the assessors, teachers and other service providers who are working with your child, but let your gut be your guide. This means that you should feel confident about asking questions and expressing any disagreements you have about your child’s abilities and needs. For example, an IEP will indicate your child’s “present levels of performance.” If a blanket statement is made such as, “Sam is a delightful child with many friends,” and you happen to know that Sam is a delightful child with such a severe language disorder that he cannot participate in age-appropriate conversations and therefore does not have many friends, speak up about this.

Parents are allowed to invite others to the IEP meeting for personal support or advocacy. I encourage this if you believe you will feel intimidated or overwhelmed by the District personnel in the room. It’s always good to have another set of eyes and ears with you and it may boost your confidence to have more support in the room.

In addition, state law may allow you to make a tape (or digital) recording of the meeting. In California, parents may record if they have given 24 hours written notice to the District of their intent. This is recommended in situations where there have been misunderstandings in the past about statements made during the IEP or when you anticipate hearing a lot of evaluation reports that you may need time to digest and want to hear again after the meeting.

The IEP Document

It is often said “If it’s not in the IEP, it doesn’t exist.” This is a good maxim to keep in mind. If someone offers a service during the meeting, but it’s not written down as part of the formal offer of FAPE, it may not happen and there will be no written record of the discussion.

The “service page” of the IEP describes your child’s placement and the services (including amount and frequency) the District is offering to provide. This section is the heart of the document and you’ll want to make sure you understand its terms before signing your consent.

Other important sections of the IEP document include your child’s designation, any accommodations and modifications to the curriculum and the goals. I’ll discuss with greater detail these sections of the IEP in future columns.

At the end of the document is a place where parents can sign their consent to the IEP. Your signature means that you agree that the District’s offer provides your child with FAPE and that you authorize the District to implement the services specified within. In the ideal scenario, you understand the terms of the IEP and agree that they are designed to help your child access the curriculum; therefore, you provide your consent and the District moves forward on the basis of what is written in the IEP. When there is disagreement about any element of the IEP, parents have the right to withhold their consent to the document and seek other avenues to resolve the conflict with the District. Next month, I will continue this discussion and describe the various options parents have when it is time to sign the IEP.

Disclaimer:
This column reflects the views of Diana B. Glick in her individual capacity. It does not necessarily represent the views of her law firm or her clients, and is not sponsored or endorsed by them. The purpose of this column is to assist in dissemination of information about federal special education law, but no representation is made about the accuracy of the information. The information contained in this column is provided only as general information for education purposes, and topics may or may not be updated subsequent to their initial posting.
By using this column you understand that this information is not provided in the course of an attorney-client relationship and is not intended to constitute legal advice. This blog site should not be used as a substitute for competent legal advice from a licensed attorney in your state. This column is not intended to be advertising and Diana B. Glick does not seek to represent anyone desiring representation based upon viewing this blog site in a state where this blog site fails to comply with all laws and ethical rules of that state.
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