Tuesday, July 21, 2015

Increasing Access to Resources for Better ADHD Management


guest blog by Sam English, PhD, and April Gower

On July 15, 2015, CHADD and Attention Point, LLC, announced a strategic partnership aimed at increasing access to effective ADHD resources to help monitor and manage ongoing ADHD treatment. Attention Point is a leading health IT company committed to improving the diagnosis and management of neurobehavioral health disorders. The company’s product, DefiniPoint, is a suite of online ADHD tools that improves ADHD management by connecting clinicians, professionals, patients, and parents.

Currently in the US there are at least 15 million people affected by ADHD who may benefit from better information and communication. Regular, ongoing communication between those involved in the care and treatment of children or adults with ADHD is a key factor in effective ADHD management. In addition to making educational and clinical resources more readily available, CHADD and Attention Point hope to increase understanding of the importance of ongoing monitoring and communication.

“This strategic alliance is a tremendous opportunity for CHADD and Attention Point to achieve mutual goals of increasing access to much-needed ADHD educational resources for individuals and families,” said Michael MacKay, President of CHADD. “Additionally, this information will benefit ADHD professionals who are on the front lines of treating this burdensome disorder.”

Both the American Academy of Pediatrics and the American Academy of Child and Adolescent Psychiatry recommend that information be routinely gathered from multiple individuals (e.g., home and school) to inform treatment decisions and to monitor progress.

“Carefully monitoring treatment over time is essential for promoting the healthy development of children with ADHD. Regardless of the type of treatment involved, whether medication, behavioral therapy, or dietary treatment, consistently obtaining feedback is important and can be enormously helpful to optimize a child’s ADHD treatment,” said David Rabiner, PhD, clinical psychologist, research professor, and associate dean at Duke University. “Unfortunately, as suggested by findings from a recent study,  this is infrequently done, and I am encouraged that CHADD and Attention Point will be working together to raise awareness of this important aspect of high quality ADHD treatment.”

“At Attention Point we believe that technology can help clinicians to more easily and accurately conduct ADHD assessments and provide better care for individuals diagnosed with ADHD,” said Sam English, PhD, Founder and CEO of Attention Point. He continued, “By working with CHADD, we believe together we can help the many children and adults that struggle with ADHD to lead better and more productive lives.”


Sam English, PhD, is the founder and CEO of Attention Point, LLC. April Gower is the COO of CHADD.






Tuesday, June 9, 2015

Do 504 Plans Help Students with ADHD?




by Ruth Hughes, PhD, and Matthew Cohen, JD

CHADD has had longstanding concerns with the process, quality and implementation of Section 504 plans and with compliance with the regulations governing them. To learn more about how Section 504 plans were being implemented, CHADD conducted a survey of members about Section 504 and its use around the country. The survey, conducted between July and August 2014, generated approximately 700 responses. The findings confirmed the anecdotal reports CHADD has been receiving from parents, professionals, and educators about the use (or lack of appropriate use) of Section 504 in the public schools.

Many children were deemed ineligible for special education services and received a 504 plan only at the initiative of the parent.

Here are some of the comments from respondents:
•    “They told me she didn’t qualify for an IEP because she didn’t have another medical disability such as auditory processing or a learning disability.”
•    “The principal said our child was at grade level and that he would need to be three years behind grade level to qualify for an IEP.”
•    “I was told that they did not diagnose African-American children because there is a law prohibiting IQ tests being given to them.”


Less than 15 percent of the evaluations were initiated by the school system. Parents almost always received a private evaluation and then requested an evaluation for special education services or a 504 plan. Slightly less than half of the children were denied special education services before receiving a 504 plan. The other half of the respondents did not request an evaluation for special education. But if a child was not significantly below grade level, the student was often considered ineligible for special education. The 504 plan was the fallback for approximately 45 percent of the students.

504 plans are often not effective.

•    “The 504 does not include the co-diagnoses of anxiety or depression.”
•    “Never given extra time unless he specifically asked in advance (the problem is, with [ADHD], the kid never knows when he needs extra time until it’s too late to ask for it).”


Two-thirds of parents felt the 504 plan was NOT effective in addressing their child’s needs. Behavior and discipline problems were common for the majority of children, but the majority of the 504 plans did not address behavioral issues. And co-occurring disorders were rarely addressed, even though more than two-thirds of children with ADHD have co-occurring disorders. Anxiety and panic disorders were the most common (48 percent), with several parents linking the anxiety to the school’s lack of response to the student’s real issues. The plans rarely went beyond accommodations in the classroom such as preferred seating and extra time on tests. And often the student was responsible for explicitly requesting the accommodation, even though many students with ADHD (including those in the survey) have trouble with planning, organizing, or initiating.

Plans are often not implemented.

•    “The teacher wasn't following the plan at all, she admitted to me that she hadn't even read the 504 plan [and] didn't even know what a 504 was.”
•    “Teachers refuse to comply with the 504. We were actually told by the resource room coordinator that they all thought these were suggestions and optional, not required.”


Compounding the problems of inadequate design of the 504 plans was inadequate implementation. Problems with the implementation of the plans were expressed by 66.4 percent of our respondents. Unlike special education, there are no additional funds for schools for 504 plans. Some school districts see this as an unfunded mandate. There is less accountability for the implementation of the 504 plans than for special education plans (IEPs). And there is little attention paid to the effectiveness of the 504 plan in helping the student do better at school.

Parents were often not informed of their procedural rights and safeguards against inappropriate discipline were reportedly frequently not followed.

The vast majority of parents responding were not aware of their procedural rights under Section 504, including the right to a hearing if there was a dispute over 504 issues. Further, students encountering behavior problems were not given interventions to address their problem behavior. Students subjected to suspension or expulsion were generally not given a manifestation review meeting to determine if their behavior was due to their disability.

What can you do?

If you find a 504 plan is not working for your student, make a request in writing to the principal for a meeting to discuss the problems with the school. If this does not lead to an effective remedy, then you may file a complaint with the Office for Civil Rights in the Department of Education. A complaint must be filed within 180 days from the incident(s) involving discrimination, so don’t wait too long. You may also request a Section 504 hearing from the school instead of or in addition to filing a complaint with OCR.

CHADD continues to work with the Office for Civil Rights. We are asking OCR to issue new guidance to school districts on ADHD and 504 plans. You can help move this process along by contacting your Congressperson (house.gov) or Senator (senate.gov) and asking them to urge the Office for Civil Rights at the Department of Education to issue a new Policy Guidance to address the problems of 504 plans for students with ADHD. Both a sample request and the final report on CHADD's 504 survey are available.

WHAT IS A 504 PLAN?

Section 504 of the Rehabilitation Act prohibits discrimination against any person with a disability. In the school setting, this means providing accommodations, supports, or services for students with disabilities so that the student may fully participate in school activities and receive a free and appropriate public education. This is not the same as special education. Usually, students with ADHD who are experiencing difficulties at school but are not eligible for special education services are eligible for a 504 plan.

Most 504 plans call for accommodations in the regular classroom such as seating preferences, additional time on tests, or a copy of teacher’s notes. But instructional and related services that are necessary for the student with ADHD to have equal access to the educational process with his or her fellow students may be included in the plan. You can request an evaluation for special education or 504 services by sending the principal a dated, written letter. Do it in writing so you have documentation of the request and the date of submission.


Ruth Hughes, PhD, is a special advisor to the CHADD board of directors and a member of its public policy committee. A clinical psychologist by training, she served as CHADD CEO from 2010-14.
Matthew Cohen, JD, is well known for his work in special education law and extensive experience in healthcare and mental health law. He is a past president of CHADD and currently serves on its public policy committee.

Tuesday, May 12, 2015

Calling All College Students… Participants Needed for 2-Day Summit on Preventing ADHD Medication Misuse



You may be eligible to participate in a two-day summit, including an all-expenses-paid trip to Washington, DC, to discuss ADHD prescription drug misuse, abuse, and diversion on college campuses.

Can you answer yes to the following:

  •     I’m a college student
  •     I’ve been diagnosed with ADHD
  •     I take ADHD meds

Summit participants will receive an all-expenses-paid trip to Washington, DC, in July.

 
CHADD and the Coalition to Prevent ADHD Medication Misuse (CPAMM) are teaming up to get to the root of the misuse of ADHD medications on college campuses across the US and get your feedback on how we can prevent it.

This is an opportunity to have your voice heard and take action on this serious issue. Participants will hear presentations that inform and enlighten. You’ll also be able to share your own experiences and make recommendations on how to prevent the misuse of prescribed ADHD meds.

Take action today – submit the application by May 20 to reserve your seat – it’s free!

 
If selected to participate in the Summit, you will be required to:
1.    Travel to Washington, DC (FREE TRAVEL)
2.    Participate in panel discussions sharing your experiences as a student on ADHD medications
3.    Share your position on the issue of sharing your medications
4.    Help develop recommendations for a public health campaign for college students that addresses the misuse, abuse, and diversion of ADHD prescription medications.

DEADLINE: May 20.

Questions? Contact Ruth Hughes.

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Thursday, April 23, 2015

Are You a College Student with ADHD? You Can Make a Difference

by Ruth Hughes, PhD

CHADD (Children and Adults with Attention-Deficit Hyperactivity Disorder) is inviting college students diagnosed with ADHD to help us address ADHD prescription stimulant misuse, abuse, and diversion on campus.

CHADD is working to address this issue as a partner of the Coalition to Prevent ADHD Medication Misuse (CPAMM), and we welcome the perspectives of students with ADHD who may have shared their medication and those who have not.

Specifically, in 2015 CHADD is working with CPAMM to convene experts, influencers, and stakeholders at a two-day Summit in Washington, DC, the week of July 13, to gather research and perspectives on the issue, and to identify ways to reach the college population and help prevent the misuse, abuse, and diversion of ADHD medications. The Summit will offer all participants insightful research presentations that inform; panels and conversations that enlighten; and breakout sessions that engage and report out with actionable recommendations for helping to prevent misuse on college campuses. As a result, we are looking for students who may have shared their medications and those who have refused to do so.  

This is an opportunity to have your voice heard and take action on this serious issue. All perspectives and experiences will be shared in a confidential and non-judgmental environment.

Please consider joining us at the summit to share your perspective by filling out the application. CPAMM will pay your travel and accommodations in Washington, DC, to participate in the conference. We invite you to pass this information on to others who might be interested.

If you are selected to participate in the Summit, you will be required to:
  1. Travel to Washington, DC, at CPAMM’s expense, to participate in the CPAMM Summit to Prevent ADHD Medication Misuse;
  2. Participate in a panel discussion describing your experience with students requesting that you share your ADHD medication, and/or your familiarity or position on the issue;
  3. Join three conference calls for planning purposes; and
  4. Help to develop recommendations for a public health campaign that reaches college students and helps prevent the misuse, abuse and diversion of ADHD prescription stimulants.
If you would like to be involved in this unique opportunity please complete and return the application by May 20, 2015 to ruth_hughes@chadd.org.  If you would like to more information or have questions, please don’t hesitate to contact me directly.

After the Summit we hope to form a student advisory board on this and other issues facing college students with ADHD. Stay tuned for more information.



Ruth Hughes, PhD, is the former CEO and now serves as a special advisor to the CHADD board of directors. A clinical psychologist by training, she has an adult son with ADHD who is thriving.

Tuesday, November 18, 2014

Important Information on Generic Versions of Concerta

by Ruth Hughes, PhD

 
If you, or those under your care, are taking a generic version of Concerta (methylphenidate hydrochloride extended release tablets), be aware that the Food and Drug Administration has some concerns about their bioequivalency—their effectiveness. After receiving numerous complaints about the generic versions made by Mallinckrodt Pharmaceuticals and Kudco Ireland Ltd., the FDA has given both companies six months to demonstrate their products’ bioequivalency to Concerta or withdraw them from the market.

The FDA has not identified any serious safety concerns with these generic brands. They are not suggesting you make changes to your treatment (or your child’s treatment) unless you consult with your health care provider. The FDA has not expressed concerns regarding the generic brands (methylphenidate hydrochloride EX) manufactured by Actavis or Janssen.

So what does this mean for you? If someone in your family is currently taking a generic version of Concerta, CHADD recommends that you:

1.    Check with your pharmacist and find out what company is manufacturing your medication.
2.    Share the FDA alert with your pharmacist.
3.    Consult with your health care provider if you are concerned about the effectiveness of your medication, or have any other concerns about its use.
4.    If you and your health care provider determine that it would be best for you to change your prescription for name brand Concerta, be certain to ask if your insurance plan covers this cost.
5.    If it doesn’t, ask your health care provider to contact your insurance company and request an exception from any restrictions requiring generic medications for ADHD.

We will keep you informed on this issue.


Ruth Hughes, PhD, is the former CEO of CHADD. A clinical psychologist by training, she has an adult son with ADHD who is thriving. A former member of CHADD's national board of directors, she served as both Deputy CEO and Chief Program Officer before becoming CEO, and now serves as a special advisor.

Friday, March 21, 2014

Acetaminophen, Pregnancy, and ADHD

Guest blog by Max Wiznitzer, MD

Newly published in JAMA Pediatrics, this is a study of mothers’ use of acetaminophen during pregnancy and the subsequent development of ADHD-like behavioral problems in their children. The data were taken from the Danish National Birth Cohort, which recorded information for sixty percent of pregnant women during the years 1996-2002, during and six months after pregnancy. Later, information was obtained about the mothers’ and fathers’ behavioral problems during childhood and about their children’s behavior, presence of hyperkinetic disorder (a form of ADHD), and stimulant prescriptions. The group of children numbered more than 40,000. The study found an association (a relationship) between the mother’s use of acetaminophen during pregnancy and the presence of ADHD-like behaviors, the diagnosis of hyperkinetic disorder and the use of stimulant medication, especially if the acetaminophen was used for more than one trimester or at least once weekly for many weeks.

What is the significance of this study? It tells us that, in this Danish population, there is an association or connection between use of acetaminophen during pregnancy and ADHD features in the children. It does not tell us why this relationship exists—does one cause the other, is there another factor that affects both, or is this just a coincidental result? The large number of mothers in this study makes it likely that the results are real and not coincidental. However, while many reasons that could explain the relationship were examined, others were not, such as ADHD in the family or the reason for acetaminophen use.

What does this mean for the pregnant woman? Experts do not recommend changing the usual habit of using acetominophen for fever or significant discomfort during pregnancy. However, pregnant women should be aware of the reason for the acetaminophen use and, as for any other medication, strongly consider whether it is needed. If necessary, they should discuss any concerns with their obstetrician or family doctor. Lastly, they should realize that more research is needed to confirm or refute this finding and, if real, to determine the reason for the relationship between acetaminophen and ADHD-like behavior problems in the children.


Max Wiznitzer, MD, is the director of the Rainbow Autism Center at Rainbow Babies and Children's Hospital in Cleveland. He is also associate professor of pediatrics and neurology at the Case Western Reserve University School of Medicine. He is a member of CHADD’s professional advisory board.

Friday, March 7, 2014

The Myth That "ADHD Doesn't Exist"

guest post by Mary V. Solanto, PhD

Recently, there has been much attention paid to an article entitled “ADHD Doesn’t Exist” that appeared in a number of major U.S. publications, based on a book of the same name just published by Richard Saul, MD. Dr. Saul, who describes himself as a behavioral neurologist, makes his point by describing cases of children who came to him exhibiting signs suggestive of ADHD (difficulty concentrating, poor academic work etc), but who turned out upon closer examination to instead have a learning disorder, anxiety, impaired vision, or even bipolar disorder. His implication is that all children who are referred for attention or behavior problems will be found instead to have another condition that accounts for their symptoms. Abundant evidence indicates otherwise.

Any reputable, knowledgeable mental health practitioner will take care to rule out these alternative conditions as the exclusive or primary cause of a child’s attention or behavior problems before diagnosing ADHD. But after other possible disorders are ruled out, a significant number of children meet the formal criteria for ADHD, as described in the Diagnostic and Statistical Manual. These are: (1) symptoms of inattention and/or hyperactivity-impulsivity that are extreme for the child’s age; (2) that occur both at home and at school; (3) with clear evidence that the symptoms reduce the quality of the child’s social, academic, or occupational functioning; (4) that are chronic, starting before age 12 and lasting at least 6 months; and (5) are not explained by another disorder.

Evidence that ADHD is a real disorder—and specifically a brain disorder—comes from several major sources. Neuroimaging has demonstrated that children with ADHD show (a) structural size differences in relevant brain areas and (b) less activation of brain regions that control attention, impulses and motor activity, organization, and planning, and that many of these differences persist to adulthood as well. Finally, family studies indicate that the condition is highly heritable and point to a genetic predisposition in the great majority of cases.

The unfortunate impact of this and other publications that are not fact-based is that they add to the stigma of ADHD and hinder the diagnosis and treatment of thousands of people who do have ADHD, and whose lives would be significantly improved with treatment.


Mary V. Solanto, PhD, is associate professor of psychiatry and director of the ADHD Center in the Division of Child and Adolescent Psychiatry at Mount Sinai School of Medicine. She is a member of the advisory board of the Journal of Child Psychology and Psychiatry and of the editorial boards of the Journal of Attention Disorders and The ADHD Report. Dr. Solanto serves on the professional advisory boards of Children and Adults with ADHD (CHADD) and the American Professional Society of ADHD and Related Disorders (APSARD). She is the author of Cognitive-Behavioral Therapy for Adult ADHD: Targeting Executive Dysfunction (Guilford Press, 2011).