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.