Edge Foundation Blog > Archive for January, 2012

Are there days that feel like ADHD is a burden holding you back from your dreams?  Don’t despair.  There are tons of successful people out there who have ADHD.  A recent article in Parenting listed 18 celebrities who are open with their ADHD.

• James Oliver, Star Chef
• Karina Smirnoff, Pro Ball-room  and Latin dancer
• Will Smith, Actor
• Michael Phelps, Olympic Gold Swimmer
• Jim Carrey, Funny Man and Comedian
• Ty Pennington,  Extreme Makeover Actor
• Richard Branson, Funder of Virgin Airlines
• Paris Hilton, Heiress/Socialite
• Christopher Knight, Actor
• Howie Mandel,  Comedian
• Terry Bradshaw, Former NFL Quarterback
• James Carville , Political Commentator
• Paul Orfalea, Kinko’s Founder
• Pete Rose, Baseball Star
• Michelle Rodriquez, LOST Star, Actor
• David Neeleman, Founder, Jet Blue Airways
• Bruce Jenner, Olympic Decathlon Athlete & Kim Kardashian’s dad
• Solange Knowles, Singer, Sister to Beyonce’

You know there’ve got to be countless other successful people out there besides them – so why not you include yourself on that list?  You might not be famous (yet) but you’ll never reach your dreams by telling yourself you can’t make it.

If you are discouraged, however, an ADHD coach can help you get back on track.  Today is a good day to start putting your application together for Shire’s ADHD coaching scholarship that includes a $2000 academic grant.

There may be reasons you aren’t on the ADHD A-List, but your ADHD isn’t one of them.  What are you waiting for?

Jesse (not his real name) was an average college student majoring in engineering major at a big university.  He lived in a dorm room, went to class during the week and partied on the weekends. But one thing about Jesse’s college experience set it apart from many others’:  he has ADHD.

Jesse told us he figured out he had ADHD when a friend was diagnosed.  “So I went to get screened. After what ended up being a three-month-long process of tests and doctor visits, I was diagnosed.”

College is a particularly difficult time for students with ADHD.  Academic demands, increased independence, more free time, and a distracting environment, creates an environment where many untreated ADHD students are likely to fail.

“If I hadn’t got treatment,” Jesse said, “I can basically guarantee that I would have flunked out.” Fortunately Jesse found a medication that helped with focus, accommodations that allowed him to take exams in less distracting environments, and, perhaps most importantly, he found an ADHD coach.

ADHD coaches are commonly used in ADHD treatment, and students who received ADHD coaching have been shown to show substantial gains in their overall approach to learning. Neil Peterson, founder of Edge Foundation explains, “Medications do not work for everybody. They are not ‘the’ answer because medications do not teach skills — but coaches do.”

Edge ADHD Coaches work by helping a person with ADHD to organize their life on their own, rather than telling them what to do. The coach meets with a student once or twice per week, and helps him or her with goal setting, prioritizing, focusing, confidence, etc. The students set weekly goals and action plans to meet those goals and have e-mail and phone support from their coaches to help keep them on track.

Now Edge is teaming up with the Shire foundation to offer 50 more scholarships for students with ADHD.  Students Shire Expands Scholarship Program for Individuals with ADHD.  The Shire ADHD Scholarship includes a $2,000 monetary award and offers a prepaid year of ADHD coaching services provided by the Edge Foundation. Fifty one-time scholarships will be awarded on June 12, 2012. The deadline to apply is March 30, 2012.

For information, including eligibility requirements and scholarship application, visit www.ShireADHDScholarship.com .

Don't get caught short without ADHD medication

It’s been nearly a year since we first started hearing about ADHD medication shortages and it looks like the end is not coming soon enough.

When the shortages were first reported, all parties thought it would be a short-term problem.  But now apparently the problem is getting bigger, not smaller.

Last week CHADD published an editorial outlining the reasons for the shortages (essentially the DEA makes a “guess” each year about how much production to allow of the controlled ingredients used in ADHD drugs.  Hint: they guessed wrong.)  Short acting ritalin prescriptions seem to be most at risk for shortages at this time.

Plan ahead!  The Short Term Outlook is not good:

The medication production cycle is 8 to 12 weeks long and on top of that the DEA application process is long and cumbersome.  Thus there is a significant time lag between the identification of a shortage and its correction.  This year it looks like the shortages will not be resolved until next spring.

According to CHADD, which has following this issue closely, “Many of the companies that manufacture the short acting stimulant medications report they have no inventory left or limited inventory… it is unlikely that the 2012 DEA approved medications will get to market until March at the earliest.”

What can you do to protect yourself?

1. Be sure to order your medication early. Don’t wait until you take your last pill to take your prescription to the pharmacy.
2. Schedule a reminder for yourself to bring your prescription in for a renewal 1 week before it runs out.
3. Make friends with your pharmacist.  If you do they’ll give you tips about what works best for their particular pharmacy.
4. Need other ideas?  Check this article for more tips.
5. Take the CHADD medication survey.  CHADD has been organizing an advocacy group to address this issue with the FDA, DEA and Congress.  At this time the group includes  the American Academy of Child and Adolescent Psychiatry and patient advocacy, clinician and pharmacy related associations.  The information you provide on the survey will be helpful to this group as they work to help create a solution that avoids shortages in the future.

Many students with ADHD are familiar with receiving accommodations as part of their 504 plans.  You may not know that you can also request accommodations standardized college admissions. Many of the testing organizations have been accused of putting up barriers to receiving these accommodations.

Protecting Disabled Students’ Rights to Accomodations

The Government Accountability Office has studied this issue and issued a report earlier this week recommending that the Department of Justice become involved in ensuring the testing industry provides accommodations to all eligible individuals.

AHEAD (Association on Higher Education And Disability) is in the process of revising its guidance on best practice for testing accommodations to place less emphasis on diagnostic tests to determine eligibility and more focus on educational and accommodation histories of individuals.  They are a great resource if you need more information on this subject.

A complete copy of their press release on the subject follows:

GAO calls on the Department of Justice to protect students’ rights

Each year, millions of people take standardized tests in pursuit of a college education, graduate studies, and professional certification or licensure.  The Americans with Disabilities Act requires companies that administer these tests to provide test modifications to best ensure equal access for individuals with disabilities.  The high stakes testing industry has generated considerable controversy, a significant number of law suits and voluminous complaints to federal agencies and concerning who has a disability and how to determine what accommodations are necessary to provide equivalent access.

At the request of Representatives George Miller, Pete Stark and Cathy McMorris Rodgers the Government Accountability Office (GAO) examined the process including the types of accommodations requested, factors companies consider when making decisions about requests, and how federal agencies enforce ADA compliance within the industry.

AHEAD (Association on Higher Education And Disability) and a number of its members participated in the GAO study’s interviews that helped provide a context for the GAO’s reviews of relevant laws and regulations, testing company policies, data provided by the testing industry, and federal complaint data.

The report recommends that the Department of Justice develop a strategic approach to enforcing the ADA in the high stakes testing industry to ensure the timely provision of accommodations to all eligible individuals. Justice has reviewed the report and agrees with its approach and conclusions.

This report, the amendments to the ADA, the regulations recently issued under Title I, II and III (particularly Section 309) along with a string of recent court cases clearly confirms an emerging approach to reviewing accommodations requests that is anchored to individual disability histories rather than the snap shots provided by diagnostic testing; more often asking “Why not” in response to a request for accommodation rather than “Why?”.  This approach will require a more thoughtful and commonsense approach to determining accommodations relying more heavily on unique experience of the individual and the  recommendations of clinicians and health care providers in order to achieve the broad goals of the ADA in connection with high stakes tests.

AHEAD (Association on Higher Education and Disability http://www.ahead.org) has been revising its guidance on best practices in documentation and expects a Spring release.  The revisions will place less emphasis on diagnostic tests to determine eligibility; focusing instead on the educational and accommodation histories (formal and informal) of individuals, their supporting narratives and the surrounding context including the development of new technologies.  AHEAD encourages other organizations to review their practice and is happy to offer technical assistance; contact AHEAD via e-mail or call (704) 947-7779.

The full report Higher Education and Disability: Improved Federal Enforcement Needed to Better Protect Students’ Rights to Testing Accommodations (Report to Congressional Requesters AO-12-40 United States Government Accountability Office) can be found at http://www.gao.gov/products/GAO-12-40.