Saving SSI for People with ADHD

This week's guest blog is by Soleil Gregg.

Imagine that you have a child with very severe ADHD symptoms, serious behavior problems, and a recent expulsion from school. Then imagine that you have no job and very limited resources to pay for treatment, medication, or assistance for your child.

This is the plight of many families who apply for Supplemental Security Income for their child with a disability. SSI is a program of Social Security that provides assistance for children and adults with disabilities who are living in poverty. Recently this program has been threatened.

Since its founding in 1987, CHADD has worked tirelessly to improve the lives of individuals with ADHD through education, advocacy, and support. The fruits of this labor have been increased understanding of ADHD as a neurobiological disorder and recognition that the disorder can be debilitating throughout the lifespan. Thanks in part to CHADD’s efforts, eligible children with ADHD are now able to receive education services under Section 504 and IDEA, college students and adults with ADHD may be eligible for accommodations under the ADA in the classroom and workplace, and children and adults who are severely affected by ADHD and meet incomes guidelines may qualify for SSI to help with their care and treatment.

But just when we are feeling good about the strides we’ve made over the years to improve the lives of people with ADHD, something comes along to shake us out of our complacency and make us aware of just how tenuous these gains might be. Such was the case when we learned that SSI for children with ADHD was in jeopardy.

Last fall the Boston Globe ran a series of articles on SSI fraud, claiming that some low-income families have their children diagnosed with ADHD and give them “drugs” solely to get SSI, implying that a substantial number of children are being misdiagnosed with ADHD and unnecessarily medicated by doctors and parents. While CHADD certainly doesn’t condone fraud, the Globe articles presented no real evidence that there is fraud in SSI—only a few anecdotes.

In fact, the number of children who are approved for SSI for ADHD is relatively small, given current knowledge of the incidence of ADHD. In order to be eligible for SSI, a child must have a diagnosis of ADHD (or another disability) and meet very restrictive functional criteria and income guidelines. SSI is intended to be reserved for those in financial need with the most severe impairment. Recent SSI data showed that nearly 71 percent of children applying for SSI for ADHD were denied approval, ranking ADHD in the lowest quartile of approval rates for childhood mental disorders.

Nonetheless, the Globe series raised concerns in Congress and prompted several members to request an investigation of SSI by the U.S. Government Accountability Office (GAO), particularly focusing on children with ADHD, depression, and other mental impairments.

CHADD began working with the SSI Coalition for Children and Families, spearheaded by the Bazelon Center for Mental Health Law, to address Congressional concerns and to preserve SSI for eligible children with ADHD and other mental health disorders. Then, to make matters worse, we learned that the House Budget Committee had added language to its budget report to remove “incentives for parents to place their children on medication solely to receive SSI benefits” and, more recently, to specifically eliminate ADHD from SSI altogether as part of spending cuts.

During the week of July 21, the SSI Coalition managed to arrange a briefing with Senate Finance Committee staff despite the looming debt ceiling crisis. CHADD identified a mother, Suzanne Poe, whose child receives SSI for ADHD and who was willing to come to Washington on a moment’s notice and share her family’s experiences. Suzanne and CHADD CEO Ruth Hughes met with staff from seven Congressional offices in addition to Finance Committee staff.

I am happy to report that these meetings were very successful, and Suzanne was a fantastic voice for families. The very best news we heard is that the proposal to take ADHD out of children’s SSI is now off the table and no longer part of the overall budget negotiations—that ADHD is no longer a target.

But we are not out of the woods yet.

There are still discussions about limiting the SSI program, and many programs will surely face cuts under the debt ceiling agreement. In addition, the Homeland Security and Government Affairs Committee has requested the GAO to look at “waste and abuse of prescribing practices” for children in foster care, and another group of senators and representatives has asked the GAO to look at rates of mental health conditions and medication use in children in Medicaid, the Children’s Health Insurance Program (CHIP), and foster care. We have also learned that Secretary Kathleen Sebelius of the U.S. Department of Health and Human Services has a special interest in medications for mental disorders in children enrolled in Medicaid and CHIP.

CHADD will review the GAO reports when they are released. We will keep you posted on events as they develop and let you know what you can do to assist us in protecting the rights of people with ADHD.

Rest assured that CHADD will do its very best to educate policymakers on Capitol Hill about the challenges facing children, adults, and families with ADHD. CHADD will work to preserve the hard-fought gains we’ve made in recognition, treatment, and services over the past 24 years.

Soleil


Soleil Gregg is past secretary of CHADD’s board of directors and past chair of the public policy committee and editorial advisory board for Attention magazine. She represents families with ADHD for CHADD on AACAP’s Pediatric Pharmacology Initiative and is a member of the SSI Coalition. She is a retired education consultant and worked as a disability and policy specialist at one of the regional educational research laboratories and regional technical assistance centers. She is a mother of two grown children with ADHD and is also an adult with ADHD.

CHADD's NRC Needs You!

by Mary Durheim


To all my friends and colleagues in the world of disability—this is a National Call for Action!

Those of you who know me know that I do not Tweet, seldom correspond via Facebook, avoid blogs, and never participate in chat rooms. The mere fact that I am writing this blog posting is a sure sign that we who are touched by disability—either as a person with a disability, or as that person’s parent(s), sibling(s), relative(s) or friend(s)—are facing something important.

I’m writing to tell you of a national challenge with potentially devastating consequences for millions of Americans with physical and mental disabilities. I’m writing to ask for your help!

I write specifically on behalf of CHADD’s National Resource Center on ADHD (NRC), but this issue directly impacts millions of people with disabilities and the organizations that are usually the only voice for individuals and families like ours.

For Fiscal Year 2012, the National Center on Birth Defects and Developmental Disabilities (NCBDDD) at the Centers for Disease Control and Prevention (CDC) is planning to eliminate specific funding for programs that support people with disabilities such as ADHD, spina bifida, muscular dystrophy, limb loss, and paralysis.

Instead of sharing the burden of decreased funding among all of the disability programs it currently supports, government bureaucrats have decided to play a game of winners and losers. In this game, some programs or conditions will continue to be funded at current or even higher (!) levels, while others will simply not be funded at all.

Does that seem fair? Does that seem right? If there’s not enough stew in the dinner pot, is any mother going to feed two children their full portion and tell the third child, “There’s none for you”? Of course not! Everyone should still have a place at the table and the burden of less should be shared by all!

Instead of sharing the burden in these tough economic times, the bureaucrats call their plan “consolidation.” But to us, it looks more like “elimination.” Over the past few months, a coalition of disability organizations has met numerous times with CDC officials to learn more about what this “consolidation” means. Like many of their colleagues, CHADD representatives came away from these meetings wondering where ADHD fits in.

NCBDDD and ADHD

Established by an Act of Congress in 2000 (P.L. 106-310), the NCBDDD impacts the health of millions of our nation’s most vulnerable citizens: infants and children, people with blood disorder, and people with disabilities. NCBDDD is the only CDC center whose mission focuses on these populations. (In FY2010, NCBDDD was funded at $143.6 million and at $136.1 million in FY 2011, a decrease of 5.25%, while the National Resource Center on ADHD had a decrease in funding of 7.16% during the same period).

Consolidation of programs or elimination of the NCBDDD disability division would be disastrous.

For families dealing with ADHD, these changes would continue to seriously jeopardize the funding base that supports CHADD’s National Resource Center on ADHD (NRC). Think back to when you, your child, or family member was first diagnosed. Where did you go to find reliable information? Where will you go in the future to stay up to date with the most current research and appropriate interventions?

I still painfully remember when my son received his diagnosis, including but not limited to ADHD. I was scared, had little to no information, and had no one to talk to. Don’t you remember the day you received the “diagnosis”? Yes, there’s a lot of information online, but not all of it is reliable or unbiased.

In addition to providing only science-based information, the NRC is the only resource center that has trained specialists that people can actually talk with. Elimination of public funding for the NRC would essentially destroy much of the progress that has been made over the past ten years.

NCBDDD and NRC Successes

It is currently estimated that one in 33 babies in the United States is born with a birth defect and approximately 13% of children have a developmental disability. The NCBDDD funds surveillance, research and prevention activities aimed at helping us track, understand, and ultimately prevent these disorders. The success of NCBDDD programs has contributed to a 26-36% decline in neural tube defects, as well as significant advances in the identification of preventable risk factors for birth defects and improved screenings.

As for ADHD, since the NRC opened its doors in 2003, trained health information specialists have responded to over 27,000 individuals seeking information, guidance, or sometimes just a listening ear. And then there are the millions of visits to the NRC web site; the special projects reaching out to African Americans and Spanish speaking persons; the monthly Ask the Expert chats; the newsletters; the information sheets… the list goes on!

Business in Washington, DC, is and always has been centered on party politics. My call for action to maintain the current structure and funding of the NCBDDD, its disability divisions, and especially funding for the NRC, has nothing to do with whether we are Republicans, Democrats, Independents, or however we may classify ourselves. It has everything to do with the lives of our children, our friends, ourselves. It is about our future and those who will be born in the future and the quality of life future generations of people with ADHD or other disabilities will have.

We urge you to become involved and let your voices be heard. Help us to save not only the National Resource Center on ADHD but also the NCBDDD disability division.

Yes, these times are tough. But certainly no one—not the President, not Republicans or Democrats nor leaders in either the House or the Senate—wants to be known as the ones who undid a decade of work done through CDC that positively impacted the lives of people with ADHD and other disabilities.

How You Can Help

In the coming days, while Congress is in recess and our senators and representatives are in their home states and districts, we will be asking you to contact these elected officials and let your voice be heard. CHADD will provide you with the facts on the accomplishments of the NRC and NCBDDD.

We will post sample letters for you to assist in communicating with your representatives. We will give you tips on how to tell your story—because nothing has an impact like the power of a personal story! We will ask you to make sure that your elected officials know how important it was—and is—to have access to solid, science-based information that has the ability to change lives and help people with ADHD reach their full potential.

Congress must hear these stories—by the thousands—if we are to continue to make progress.

Thank you… and stay tuned!

Mary Durheim


Mary Durheim is a past president of CHADD and one of the founders of CHADD’s Parent to Parent program. An educational consultant, she is active in numerous county and state interagency organizations as a trained mediator, Section 504 hearing officer, and behavior strategist. Durheim is the mother of two adult children with ADHD.

Don't Miss NOW WHAT?! This Sunday!

This week's guest blog is by Marie S. Paxson.

“Overture, curtains, lights... this is it, the night of nights!” Now What?! is Sunday!

Let me apologize in advance for being a shill for the new production of Now What?! Two performances of this show about adult ADHD will be held at the Clarice Smith Performing Arts Center this Sunday. While the name of the show may seem odd, for those with a recent diagnosis of ADHD it sums up what’s likely been going through their minds…now what?

The show is a must-see for anyone who has been diagnosed with ADHD and could use some good information about dealing with the disorder and what treatments and options exist. In fact, if you are close to someone that you think has the disorder, my suggestion is get tickets and go see this show! Oh and the best part? Rick Green and Patrick McKenna, two stars of Canadian television and PBS, make this show hugely funny with their comedy bits and sketches. It’s just good medicine for those affected by ADHD, plain and simple!

If you’ve ever seen the PBS documentary about ADHD called ADD & Loving It?! then you know the talents of these two men. They’re joined by Dr. Umesh Jain (Dr. J) an expert in ADHD, who plays the straight man to the comic antics of Rick and Patrick. But there’s more to this show than fun and games. There’s a lot of good information delivered in the form of an engaging stage production. The actors even bring members out of the audience to play “roles” in the show. The purpose of the show is to dispel the myths and rumors about ADHD and to let people with ADHD know that a diagnosis is not a death sentence. Many, many people diagnosed with ADHD are hugely successful actors, authors, doctors, athletes, and politicians.

Many people feel that ADD & Loving It?! has taken a lot of the blame and shame out of having adult ADHD. It would be good for recently diagnosed adults, as well as those struggling to accept that their lives will be different than they expected. Public television stations across the country have run the documentary ADD & Loving It?! and it was featured on the most recent cover of Attention magazine.

In Now What?! Rick, Patrick and Dr. J discuss ways to manage money, improve organizational skills, and provide advice on what to say to those who feel that people with ADHD are daydreamers and lazy. And while there’s nothing funny about ADHD, the actors provide poignant dialogue about the foibles of this misunderstood disorder. Interestingly enough, when Rick approached Dr. J with the idea of creating a humorous documentary about ADHD, he was met with incredulity. A show that makes fun of a mental disorder… Is nothing sacred? Well, my friends, the old adage is you can catch more flies with honey than with vinegar and this production is sweet honey!

I hope you’ll take my advice and see this show.

Now What?! is scheduled for two performances (1:00 and 6:30 pm) at the University of Maryland’s Clarice Smith Performing Arts Center, Dekelboum Concert Hall on the College Park, Maryland campus this Sunday, June 12.

TICKETS ARE NOW AVAILABLE AT DISCOUNTED PRICES WITH SPECIAL PROMO CODES! For information visit the CHADD website or contact CHADD directly at 301—306-7070 x118. For online ticket orders click here. Adults can purchase tickets with the promo code SPECIAL at $24.50, and students may use the promo code STUDENTSPECIAL to purchase tickets at $10.00 each. Tickets may also be purchased at the box office.


Marie S. Paxson is the immediate past president of CHADD.

The Geniuses Behind NOW WHAT?!

This week's guest blog is by Barbara Hawkins.

I am so looking forward to seeing the new stage production about adult ADHD called Now What?! with Rick Green and Patrick McKenna. These two popular Canadian actors/comedians have created a new show to dispel the myths and misinformation about adult ADHD. No small accomplishment if it works.

I’ve enjoyed watching McKenna and Green in ADD & Loving It?! on PBS more than once. The popular documentary has likely done more for people affected by ADHD and their families than a lot of other “treatments.” What I am really excited about, however, is that this new show is a stage production, not a documentary. That means live on-stage performances that include skits and interactive exercises in which the audience actually gets to participate. It’s kind of like an entertaining therapy session with no doctor’s bill afterward!

Rick and Patrick have themselves long been diagnosed with ADHD. That’s the reason why their production should be something special, because everything in the show is influenced by their personal experiences. They are joined onstage by Dr. Umesh Jain, or Dr. J as he is known, internationally recognized in the field of ADHD.

Dr. J can boast some major career accomplishments, with over 50 peer reviewed papers and book chapters, 90 peer-reviewed posters, invited lectures and workshops and over 300 presentations. He’s the perfect straight man to the comic characters portrayed by McKenna and Green. Dr. J has joined with Rick on TotallyADD.com in an effort to take ADHD into the mainstream and get people talking about ADHD with facts and certainty rather than drama, fear, and misinformation.

Rick Green has made hundreds of innovative television, radio, and stage shows including History Bites, The Red Green Show, Prisoners of Gravity and The Frantics. I think his greatest roles are the ones he plays in ADD & Loving It?! and in the Now What?! production.

To quote Rick, “Everything I used to know about ADD was wrong. Getting a proper diagnosis and treatment was transformational; like losing 400 pounds, only from the mind rather than the body. I was more productive with far less wear and tear on my soul. Everyone deserves to have this feeling of being in charge of their lives, rather than being a confused victim of mysterious whims. It’s possible.”

For a long time Rick managed his ADD in an “ADD kind of way”—sporadically and only when it reached a crisis. God bless television deadlines. The more roles Rick took on (producer, director, actor, writer, teacher, and father), the more he took on his ADD—and the more surprised he was at the amount of stigma, misinformation, and vitriolic opinion masquerading as fact. Knowing the power that understanding makes in addressing this syndrome, Rick created ADD and Loving It?!

While it may seem odd for a comedian to be doing something quasi-educational, Rick actually has a Bachelor of Science Degree in Physics, which he barely earned in his three years at the University of Waterloo. (That didn’t stop the university from naming Rick one of their Top 50 Graduates of the First 50 Years!) Rick’s first job was teaching at the Ontario Science Centre where he ran demonstrations, wrote and produced science-themed plays, developed exhibits, and set his hand on fire with a 40-foot-long, 1000 watt laser. OMG!

What about Patrick McKenna? He spent most of his life trying to hide what he suspected was ADHD. As a child, he was chastised for doing badly at school and didn't feel very good about himself.

Still, he is one of the fortunate ones who came through the tough times. Today, Patrick has a very happy, successful life—his career as an actor and comedian feeds into his ADHD-fueled needs. To quote Patrick, “I always craved something new and exciting, and all the scripts, characters I played, and bright lights fulfilled that desire.”

Now What?! is scheduled for two performances (1:00 and 6:30 pm) at the University of Maryland’s Clarice Smith Performing Arts Center, Dekelboum Concert Hall on the College Park, Maryland campus on June 12. For information visit the CHADD website and for ticket ordering, click here.


Barbara Hawkins, president-elect of CHADD, is the former coordinator of CHADD of Greater Baltimore and a recipient of the CHADD Volunteer of the Year Award. Hawkins is assistant dean of Villa Julie College in Stevenson, Maryland, and chair of the Children’s Mental Health Conference in Baltimore.

Now What?! Join Us on June 12!

This week's guest blog is by Steven Peer.

I always take an interest in new efforts that focus on ADHD education and information, especially when those efforts are fun, creative, and innovative. The new stage show about adult ADHD called Now What?! is one of those efforts. And it is coming to the Clarice Smith Center for the Performing Arts at the University of Maryland.

Rick Green and Patrick McKenna, the creators of ADD & Loving It?!—the popular documentary that has aired on PBS around the country—along with ADHD expert Dr. Umesh Jain (Dr. J.), have created this new stage production to help dispel the myths and misinformation about adult ADHD. They have made the process fun and engaging. This unique show was created for people with adult ADHD and for those who suspect they may have adult ADHD or who know someone with adult ADHD symptoms.

Now What?! is not a Broadway production or a long-winded dissertation about ADHD. It is a stage production the promoters call “edutainment.” As far as I know, nothing like this about ADHD has ever been done before!

If you’re familiar with the ADD & Loving It?! performances by McKenna and Green (both of whom have ADHD), Patrick gets his own ADHD diagnosis and learns from top experts about adult ADHD. The groundbreaking documentary is a blend of humor, hope, and science that educates while being entertaining, ergo edutainment. Now What?! does the same, but is a stage production that engages the audience in ways the film production doesn’t. It goes to the next level and takes the audience on a hilarious and transformative journey combining humor, drama, first-person stories, and interactive exercises.

Dr. J. and Rick Green created this funny, lively audience experience to help adults recognize the symptoms of ADHD, understand the process for a proper diagnosis, and become familiar with the various treatment options. The primary message of Now What?! is that much can be done in treatment and that diagnosis should not lead to fear, but hope!

In Now What?! Rick, Patrick and Dr. J. explore everything from careers and finances to relationships and parenting; from the history of ADHD to coping tools and strategies. “I’m the free form, free thinking out-of-the-box kinda guy,” McKenna says to Dr. J. in a hilarious skit called “The Therapy Session,” in which Patrick plays an adult with undiagnosed adult ADHD coming to see Dr. J. As the patient, Patrick inadvertently displays the most common adult impairments. “Where do you work, by the way?” asks Dr. J. “On an assembly line… making gas pedals for Toyota,” responds McKenna. And it goes on from there… hilarious at times, intense and enlightening at others.

“I’m not here to make you normal, I’m here to make you functional. Mediocrity is overrated,” Dr. J says in one of the show’s interactive audience Q&A sessions. The audience gets into the act a lot during the show. “Relationship Issues—Opposites Attract,” “Are You Smarter than an ADDer?” and “Embracing the Diagnosis” are a few of the other funny and informative elements in the production.

There's something about Canada that breeds great comedians. Rick Green and Patrick McKenna join the ranks of Jim Carrey, Mike Myers, Phil Hartman, Seth Rogen, Catherine O’Hara, Eugene Levy, and John Candy.

These two world-class Canadian comedians talk about their experiences and relate how they initially resisted their diagnosis, then discovered the facts, and the resulting rollercoaster of emotions from anger to joy to sadness to relief. Rick and Patrick talk about the difference knowing that they have ADHD has made in their lives. Despite all their career successes, according to McKenna and Green, life was much improved once they learned about ADHD and more importantly, that it was not the end of the world—more like a new beginning.

The initial Canadian performance was sold out and I expect the upcoming event at the University of Maryland will sell out, too. If you’re in the DC area on June 12 I recommend you take time and see this production, for yourself and for your loved ones.

Now What?! is scheduled for two performances (1:00 and 6:30 pm) at the University of Maryland’s Clarice Smith Performing Arts Center, Dekelboum Concert Hall on the College Park, Maryland campus on June 12.

For information visit the CHADD website and for ticket ordering, click here.

Steven Peer is the president of CHADD.

The Secrets of Power Advocacy

Today’s guest blogger is Lisa LaVardera, Esq.

If you have a family member with ADHD and you are looking to cut through the information/advice clutter, then One Day, One Location, Many Solutions to ADHD and Co-Occurring Conditions is the place to go! By the end of the day, you will have a clear understanding of ADHD...and more importantly, you will have strategies to manage it.

ADHD is a lifespan disorder, and often comes with multiple coexisting conditions. If you are new to the world of ADHD, or continuing on your journey, you will find many interesting breakouts at this conference, from understanding twice exceptional kids, to special education law, to bullying, to how to transition your child to college, to women’s relationship issues and how to keep your marriage alive with ADHD. Plus, the keynote speaker is the one and only Chris Dendy, author of multiple books on ADHD and executive functioning deficits. Like to eat? This conference comes with lunch!

Do you have a child with special needs whose needs are not being met in school? Would you like to learn more about how to become a powerful advocate for your child? Separate myth from fact! Find out how recent changes in the law can help your child with ADHD. I will tell you what the school districts do not want you to know. Learn the secrets of Power Advocacy!

DID YOU KNOW:
• Children whose parents are knowledgeable about ADHD and know how to advocate have better long-term outcomes.
• Recent changes to the law now make more children eligible to receive special education accommodations and services.
• Your child can receive services and accommodations in school even if he is doing okay academically.
• A school psychologist might not diagnose your child’s disability.
• Why you need to get an independent outside evaluation.
• New York State has a new IEP format that is both good and bad for our kids.

In my session, we will cover the basics of the special education process; why you should have an outside medical evaluation; and what the recent changes to Section 504 may mean for your child.

Come to Long Island on Saturday, May 14, for CHADD's NY Regional Conference on ADHD and be sure to register for Power Advocacy!

Attorney Lisa LaVardera, a Certified Parent to Parent trainer, serves as coordinator of CHADD of Suffolk County, NY, a CHADD Affiliate of the Year recipient. She has received the Long Island Speech and Hearing Parent of the Year Award and the Nassau Region PTA Advocate in Action Award.

Why Do Executive Function Deficits Matter?

Chris Zeigler Dendy is this week’s guest blogger.

Executive function is a term parents and professionals have been hearing more and more often in recent years. If you’re wondering why executive functions are so important, you don’t want to miss my keynote address at the CHADD regional conference in Long Island on May 14. My presentation entitled Executive Function: Why Does It Matter? will explain what a profound impact these functions have on school performance and everyday life.

I first heard of executive function deficits in a presentation by Russell Barkley some fifteen years ago. I was stunned; everything he said described our son to a “T.” Ultimately I realized, that the deficits in executive functions were the primary reasons for our son’s school struggles, even more so that the ADHD symptoms themselves. Barkley had just provided the missing piece of the puzzle for me—the reason why our gifted son was failing four of six classes as a freshman in high school.

You probably don’t realize it, but you already know what executive functions are, it’s just that you may never have heard the term before. If your child has trouble getting started and finishing work, memorizing facts such as multiplication tables, is often late, forgets books and assignments, loses things, is disorganized and has a messy room, backpack and locker, then you’ve been dealing unknowingly with deficits in executive functions for several years.

I do hope you’ll join us on May 14. Not only will I identify key executive function deficits, but I’ll also suggest specific strategies to address these deficits. After my presentation, I’ll be available to autograph the second edition of my brand new book, Teaching Teens with ADD, ADHD, and Executive Function Deficits.

I look forward to seeing you soon.

Chris Zeigler Dendy

Chris Zeigler Dendy, MS, is co-producer of a new DVD, Real Life ADHD! featuring thirty teens who are affected by ADHD.