Tuesday, September 29, 2015

CHADD Takes Steps to Improve ADHD Treatment Monitoring

guest blog by Sam English, PhD, and Michael MacKay, JD, MS, CPA

On September 28, 2015, CHADD announced a new benefit for parent members to help improve ADHD treatment monitoring.

“After a child is diagnosed with ADHD, and treatment initiated, it is important for parents, teachers, and clinicians to have regular ongoing communication” said Michael MacKay, president of CHADD. “Fortunately, there are new online tools available that facilitate this and we have partnered with Attention Point to make their online communication tool, DefiniPoint, available to our parent members for free.”

DefiniPoint is a HIPAA secure suite of online tools that improves communication enabling clinicians to easily gather feedback from parents and teachers about the efficacy of ADHD treatment. With this information clinicians are able to make a more informed decision on the child’s ADHD care.

“Regardless of the type of treatment involved, whether medication, behavioral therapy, or dietary treatment, it is essential the clinician know how well core ADHD symptoms are being managed and how the child is performing in important domains so adjustments can be made to optimize the child’s ADHD care,” stated David Rabiner, PhD, clinical psychologist, research professor, and associate dean at Duke University. “But unfortunately, recent research suggests that this may not always be the case. A study by Epstein et al. shows that rating scale data from parents and teachers, which help determine a child's treatment response, is rarely a part of follow-up medical visits. As a result, it is likely that many children are deriving less benefit from treatment than they would if treatment monitoring were occurring.” For this reason, ADHD treatment guidelines from the American Academy of Pediatrics and the American Academy of Child and Adolescent Psychiatry highlight the necessity of sustained, systematic treatment monitoring.

In July 2015, CHADD and Attention Point formed a strategic partnership to increase awareness of the importance of treatment monitoring and to increase access to educational and ADHD management resources. “We’re glad to be working with such a wonderful organization and I applaud CHADD for recognizing the need for better communication,” stated Sam English, PhD, founder and CEO of Attention Point. “I believe DefiniPoint will benefit CHADD parents and families and ultimately result in better care for children with ADHD.”

Learn more about CHADD member benefits and join today.  Once you've joined, you'll receive information on how to access your free use of DefiniPoint.

If you're already a CHADD member, use the Attention Point Schedule a Call feature to speak with one of their team members.

Sam English, PhD, is the founder and CEO of Attention Point, LLC. Michael MacKay, JD, MS, CPA, is the president of CHADD.

Tuesday, September 1, 2015

Why Participate in ADHD Research?

guest blog by Meghan Miller, PhD

Adults and families affected by ADHD often ask this question. They may wonder if it’s really worth the effort or if their input will actually make a difference. It certainly does!

Participation in research is important and crucial for three primary reasons:

  • Participating in research offers a powerful way to make a difference in the lives of individuals affected by ADHD. It is the only way we can find new treatments and improve existing ones so they work more effectively.
  • Participating in research helps us understand how ADHD develops so that we can work toward new approaches to prevent the impairments often associated with ADHD.
  • Participating in research provides you an opportunity to tell researchers what issues are important to the people most impacted by ADHD — children, adults, and family members directly affected by the condition.

An even more common question is, “What does research participation involve?” The short answer is that it varies depending on the type of research being conducted. For example, a study testing the effectiveness of a new medication will have different requirements than a study focused on understanding academic skill in children with ADHD. It is important to ask questions about the goals of the research and methods involved to determine if the research study is a good fit for you or your family member. For example, you might ask:

  • “Will my child be given an IQ test?”
  • “Will I be placed inside an MRI scanner?”
  • “Will my family member be asked to take medicine?”

Many research studies will conduct a thorough diagnostic evaluation for ADHD, often including IQ testing and sometimes including neuropsychological and academic testing. Oftentimes these studies will provide you with verbal or written feedback based on these tests — if you ask for it. Most studies also provide you with monetary compensation for your time or a small gift for your child’s efforts.

Hopefully the question you’re asking now is, “How do I get involved in research?” Here are a few resources to help get you started:

  • Head to CHADD.org, where a list of research studies from all over the country has been compiled.
  • If you’re located near a college or university, contact their psychology or psychiatry departments and ask if they have any ongoing research studies focused on ADHD. Sometimes this information will be featured on departmental websites. For example, at my institution, the UC Davis MIND Institute, we list studies in need of participants on our website. Examples of our current research studies focused on ADHD include a project focused on infants with a family history of ADHD in order to better identify ADHD early in life, a study of medication to treat ADHD in teens, and a longitudinal brain imaging study of self-control in adolescents and young adults with ADHD.
  • Ask your doctor. Sometimes physicians who treat patients with ADHD know about local research studies and can point you in the right direction.

Here at the MIND Institute, we are excited to be embarking on a new project that will link people with ADHD with clinicians, researchers, advocates, support groups, and each other through an innovative, privacy-assured online platform called Platform for Engaging Everyone Responsibly, or PEER, a project of Genetic Alliance. Led by Julie Schweitzer, PhD, this will involve partnering with local and national ADHD support groups, including CHADD and the Parent Education Network. The hope is that families affected by ADHD will be able to learn from one another by using a computer from their own homes. And, by sharing their health information, they will help researchers who are determined to develop better treatments for people with ADHD.

Ultimately, participating in research involves collaboration among individuals and families affected by ADHD, and researchers who hope to better understand ADHD.

A version of this article appears in the August 2015 issue of Attention magazine. Join CHADD and receive every issue!

Meghan Miller, PhD, is a postdoctoral fellow at the UC Davis MIND Institute and a member of the editorial advisory board of
Attention magazine. She is one of the recipients of the 2015 CHADD Young Scientist Research Award. Her submission was titled, “Infants at risk of ADHD: A longitudinal study.”

Tuesday, August 11, 2015

Handcuffed in School

guest blog by Carol Lerner, MSCCC

Treating children with ADHD who have behavior issues requires a multidisciplinary approach. It is unacceptable for a third grader, or any child, to be handcuffed for behavioral issues.

It is well documented that management involves a team of professionals, including a psychologist, a behavior specialist, a psychiatrist, and/or a social worker. A police officer is not likely trained in the management of children who have ADHD.

I believe the child should be in the least restrictive environment to maintain safety for both the child who is acting out as well as the other children in the school setting. The appropriate professionals should be available and contacted immediately for intervention. Police officers working in a school setting with children who have special needs should be trained in the management of behavior issues and acceptable interventions, without the use of handcuffs or force.

Carol Lerner, MS, CCC, is a speech-language pathologist and a co-founder of CHADD.

Friday, August 7, 2015

Handcuffs and ADHD

guest blog by Ann Abramowitz, PhD

A nation views on TV an eight-year-old boy who is placed in handcuffs by a school resource officer. The child’s arms are behind his back, and he is yelling. Collectively, we experience horror watching this take place—in a classroom no less. We learn that the child has ADHD, and that another child, also with ADHD, has been treated similarly.

As a nation we seem to agree that this was not an appropriate form of discipline. In fact, my husband pointed out that if a dog were treated that way—tied to a chair with legs bound together—it would be a crime. What we are seeing here appears to be child abuse, which is a crime.

Without knowing the specifics of the case—for example, whether the children had IEPs, whether there were any type of behavior plans in place for these children and if so, whether the plans included assistance by the resource officer—I would have to speculate that what happened was an escalating chain of events that resulted in a impromptu call to the resource officer. But this may not be the case.

We know that youngsters with ADHD are more likely than youngsters without ADHD to exhibit the types of disruptive behavior that can lead to harsh discipline and abuse. We also know that youngsters with the combination of ADHD and disruptive behavior do best when they have a calm, structured environment that employs positive behavior supports; a confident teacher who administers discipline fairly and skillfully; and schoolwork that is appropriate to the child’s needs in terms of level of challenge, length and type of task. Rules and consequences should be spelled out, taught systematically and thoughtfully, and enforced calmly and consistently.

The school’s job is to create an environment in which disruptive behavior is less likely to occur, and in which it is handled well when it does occur. This isn’t easy, and it can only occur when all staff receive training and operate as a team. Positive Behavioral Interventions and Supports (PBIS) offers such a school-wide approach, and is well-established. Given such a backdrop, the incidence of disruption requiring any type of restraint will be greatly reduced.

Federal guidelines issued by Secretary of Education Arne Duncan state that restraint should only be used when there is risk of injury to someone, and that mechanical restraints should not be used. Restraint should be employed only as an emergency procedure, and never as a punishment. Each school district should have an established policy regarding restraint (and seclusion). There is absolutely no place for handcuffs, much less using them to bind a child’s arms behind his or her back.

And finally, let us consider this: Handcuffs connote criminal behavior. In this incident, school personnel saw fit to stigmatize these children as criminals. Without question this will impact their perception of themselves and others’ perception of them, perhaps for the rest of their lives.

Ann Abramowitz, PhD, a professor in the department of psychology at Emory University, is chair of the CHADD Professional Advisory Board.

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.


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.


Questions? Contact Ruth Hughes.

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