ADD/ADHD Task Force Meeting

ADD/ADHD Task Force Meeting Monday, November 22, 2004 Minutes

Members Present: Dave Dryden, Co-Chair, Office of Narcotics and Dangerous Drugs Linda Wolfe, Co-Chair, appointed by the Secretary of Department of Education Genevieve Tighe, appointed by CHADD Andrea Rubinoff, appointed by the Secretary of DSCYF W. Douglas Tynan, appointed by A.I. duPont Hospital and the Delaware Psychological Association Anthony Policastro, M.D., appointed by Medical Society of Delaware Debbie Puzzo, Task Force Administrator for the House Majority Caucus Absent: Kathleen Allen, appointed by the Speaker of the House of Representatives INTRO Co-chair Dave Dryden called the meeting to order at 2:15 pm. He thanked everyone for attending the meeting. Kathy Allen was unable to attend the meeting due to a family emergency. She submitted comments for this meeting (attached) and Corrections/Omissions to the minutes for the Nov. 3 meeting. The later was attached to the November 3, 2004 minutes and included as part of the record.

MINUTES Minutes from the November 3, 2004 meeting were approved and accepted with the inclusion of comments/omissions submitted by Kathy Allen as page 21.

ISSUE CARRIED FORWARD FROM PREVIOUS MEETING The Role of the School was addressed later in this meeting during the discussion regarding recommendations.

ACTION ITEMS FROM PREVIOUS MEETING 1. Instructional support team guidelines from random districts Linda distributed copies of documents from 3 districts regarding the referral process. (Permission to Evaluate – Laurel School District; General Procedures for Special Education – Caesar Rodney School District; and Referral for Special Services – Brandywine School District). Linda stated that procedures are used only for referral for special service, not for vision, hearing or other medical, unless the medical condition interfered with the student’s learning and an IEP was developed due to the condition (example – blindness).

2. Survey of school nurses At the previous meeting, Dr. Policastro stated that he remembered seeing a survey of school nurses relative to ADHD. Unsuccessful attempts were made by Martha Brooks (DOE), Dr. Policastro (member), Linda Wolfe (DOE member) and Deborah Puzzo (staff) to locate the survey. Linda wondered if it was a survey about controlled medications from the early 1990s, but this survey was not located either. The group agreed that there is no need to search for this document as the data from this survey would be outdated.

Linda was able to locate and share a survey the Division of Public Health did in 2001. It was a voluntary, self reporting survey sent to school nurses in public and private schools. The data was reported by state, not districts. The information received was used in a report entitled “The Burden of 2 Diabetes in Delaware”. The comprehensive report did contain some information about ADHD. Linda read the following excerpts: “School Summary Results Prevalence of chronic disorders The reports summarized in Table 1 covered 82,245 students in Delaware primary and secondary schools in October 2001. The majority (64%) of these students went to schools in New Castle County; 21% and 15% went to Kent and Sussex County schools, respectively. The schools reported large numbers of students with specific chronic conditions. The most commonly reported were asthma, attention deficit hyperactivity disorder, and allergies. … Attention Deficit/Hyperactivity Disorder (ADHD) was the third most frequently reported condition of those surveyed. The statewide prevalence was 5.3%. Several epidemiologic studies in school-age children have shown similar prevalence rates. For example, Scahill and Schwab-Stone, in reviewing 19 studies, concluded the best estimate of prevalence was 5-10%. Male gender has also been associated with increased rates of ADHD. There were nearly three times as many males as females reported to have ADHD. … Treatment ADHD is by far the most treatment-intensive condition among those surveyed. Over half of students with ADHD required daily medication, and that amounted to 2.7% of all students. These rates are consistent with those reported in Maryland in 1998.8 Over 1,000 students with allergic conditions required medication, but rarely on a daily basis. While nearly half of the children with asthma required medication, only 8.5% needed it daily. Most children with diabetes needed medication, but not always daily. One quarter of the children with psychiatric diagnoses and a smaller proportion of those with depression required daily drugs. Presumably, the drugs reported were those actually administered by school nursing staff.”

Dr. Tynan stated that Nemours has agreed to review the data from the A.I. duPont pediatric practices. The caveat is that those practices are set up to serve the low income population, so the numbers will not represent the higher economic groups. They have also agreed to survey some of the practices in Florida for comparison. Linda stated that when she was in the schools, she did not see a difference between children on Medicaid and the other children in the school, as far as the children on Medicaid would be less likely to have the medication. Nationally, there is no difference.

3. Status of HR1170 from Congressman Castle’s office Debbie Puzzo distributed a press release from Congressman Castle’s office regarding HR 1170 – the Child Medication Safety Act. This legislation passed the U.S. House by a vote of 425 to 1, but it has not passed the U.S. Senate. The bill requires states to establish policies and procedures prohibiting school personnel from requiring a child to take medication in order to attend school. Linda stated that the Delaware DOE Regulations already support such policies and procedures.

Dr. Policastro stated that very few parents understand that when they attend an IEP meeting, although they are given a list of their rights and terms of appeal and such, they really don’t understand the fact that it is their signature or lack of signature that controls the situation.

4. Remaining questions for the experts Linda stated that there are still big questions about the Delaware numbers of stimulant medications – how many and why? We don’t know how many adults. The Task Force believes the drug monitoring program would allow us to address and understand the numbers. There is a need to reference these questions in the report. 3

Dave referred to the comments that were submitted by Kathy Allen (attached). The group agreed that these comments centered around the discussion of the Delaware numbers. Given the information available, as evidenced by research and expert testimony, the Task Force is unable to explain the numbers and thus the information was not pertinent to where the group discussion is now; i.e. specifically addressing the Task Force charge from the House Resolution. Dave stated that Ms. Allen’s question “Can anyone in the group offer anything to give parents better guidance?” is where this group is heading today with its recommendations.

RECOMMENDATION FOR TASK FORCE REPORT Linda led the discussion on identifying specific recommendations for the Task Force report. She stated that the recommendations that were submitted by members prior to this meeting had been separated into categories: Teacher/school referrals; Positive Behavior Support; Reporting; Educate teachers /parents/physicians; Treatment; and Prescription Drug Monitoring.

A copy of the charge of the Task Force was distributed to all members. The charge is “to study the patterns of treatment of Attention Deficit Disorder and Attention Deficit/Hyperactivity Disorder in Delaware’s school-aged children, and the role of school personnel in the recommendation process for use of psychotropic and sympathomimetic medications on school-aged children.”

Issue: Teacher/School referrals Discussion: The group agreed that any referral should be in writing. The best thing a teacher can do is provide a summary of “observable behaviors” for problematic students. This information helps point doctors in a medical direction – not just targeted at ADHD. Teachers and/or school personnel should never recommend or suggest a course of medical treatment or medical diagnosis for any child. The referral process should be the same as the referral process used for other medical conditions, such as vision and hearing. There should be an open lines of communication between the physicians and the schools (mindful of HIPAA - parents are the channel of communication between the school and the doctor.) Further, the group felt that the communication should be standardized in some fashion and that a copy of the referral should be maintained. Action: Recommendation. The procedure for recommending a student for an evaluation should mimic the current process used for referring a student for hearing or vision screening. The nurse should receive a written referral from the teacher. The nurse should meet with the parents and/or the teacher to discuss the referral. This referral form should be standardized and a copy of the completed form should remain with the nurse. Teachers and other school personnel play an important role in providing medical personnel, when requested, with information regarding “observable behaviors” and/or ongoing feedback concerning problematic students.

Issue: Hold teachers accountable for high number of referrals. Discussion: The group agreed that no teacher should be singled out based on the number of referrals he/she makes. Some teachers are better observers and recognize symptoms better than others. Additionally, some teachers work with specific groups of children which may have higher rates of a given medical diagnosis. Action: None

Issue: A parent’s decision not to medicate a child should not prohibit the child from attending class or any school related activity. Discussion: IDEA is very clear that children have equal access to all educational opportunities. This statement reflects current DOE regulation and policy. Action: None necessary, as this policy is already in place. 4 Issue: Provide parents with information about ADHD. Discussion: Currently, when requested, nurses give information to parents about other conditions. The procedure for providing literature about ADHD, when requested, should mimic the current policy. The information that is provided must be from a reliable and objective source. Action: Recommendation. The distribution of any information should mimic the policy that is currently in place for asthma, diabetes, vision, hearing and other conditions. If requested, a parent or teacher should be given information about ADHD from a reliable source and/or be directed to the local chapter of CHADD or the CHADD website.

Issue: Communication and Collaboration between schools and the medical community Discussion: School personnel are in unique and important positions to provide feedback on children’s behavior. Observation is important to both the diagnosis and ongoing treatment of the child with ADHD. Physicians and schools should work collaboratively when appropriate and in the best interest of the treatment of a child. Action: Recommendation. Encourage schools and providers to work collaboratively and address any communication barriers.

Issue: The Positive Behavior Support Program (PBS) in the schools. Discussion: PBS is a critically important program that will address many of the problems that this group has concerns about. For children diagnosed with ADHD, regardless of whether they are medicated or not, PBS is a valid treatment program. Good behavioral strategies are a viable treatment that can be done at school regardless of eventual diagnosis and other treatments. Dr. Tynan volunteered to help create a module to add to the PBS training. Action: Recommendation. Encourage the Department of Education to educate school personnel in the areas of positive behavior support. This education should include a training module on ADHD and related behavior.

Issue: Physicians and psychiatrists who diagnose any child with ADD or ADHD should report the total number of those children to the respective school districts where the children attend school. This information should not include a child’s name nor violate the HIPAA right to privacy. Discussion: This may not be a practical thing to do. Most doctors’ offices do not have sophisticated enough computers to provide this data. Reporting would be on a volunteer basis and the data would then be skewed. If reporting was mandated – who would police? What would schools do with the information? It is not assumed that high numbers are mis-diagnoses. Action: The task force agrees that reporting is important and as such, the task force will recommend legislation to establish a Prescription Monitoring Program in Delaware.

Issue: The physician community should be better informed about the diagnosis and treatment of ADHD. Discussion: Dr. Policastro stated that there was an article in the September Pediatrics that looked at the American Association of Pediatrics’ guidelines and evaluated what percentage of the guidelines were being followed by the typical physician in practice. Approximately 40% of the physicians are following the AAP guidelines. There is a need for physicians to be better informed. The Board of Medical Practices would not be the appropriate organization. Action: The task force agrees that if Delaware had a Prescription Monitoring Program, information could be sent directly to stimulant prescribing doctors via this network.

Issue: Mental Health Parity Discussion: Mental health parity is related to the insurance issue. The mental health parity part of this is if someone has a mental health problem – it should be paid for by the insurance companies. Many times what happens is that no one wants to pay for the evaluation or the testing of the child is limited to the insurance coverage. The issue remains – is an evaluation a medical problem, mental health problem 5 or educational/ADA and IDEA issue? This has not been determined so there are opportunities for insurers to not pay. Medicaid ceased providing coverage in July 2004. Action: Recommendation: Draft a resolution or bill urging the Insurance Commissioner to provide coverage for full evaluations including psychological and other testing.

Issue: Prescription Monitoring Program Discussion: Prescription Monitoring Program is a mechanism that is gaining wide-spread support across the U.S. Among other things, it would be able to provide information about the number of children under 18, who receive stimulant medication. Such a program would have accurate information throughout the state or any given region. With that information, specific interventions could be developed if warranted. The established program should support the necessary funding through current registration funding as established in 16 De. C. 4731. Action: Recommendation. The Task Force unanimously agreed to strongly recommend that the Legislature draft legislation establishing a Prescription Monitoring Program in the State of Delaware.

Debbie provided the members with various ways the Task Force can address recommendations. The task force may: 1) strongly recommend; 2) urge; 3) encourage; 4) strongly encourage; 5) draft a resolution (for example draft a resolution encouraging DOE to do something); and/or 6) The task force can also have legislation drafted as a result of a recommendation.

The group discussed the composition of the Report. The Report should contain the following information: 1) Charge of the Task Force; 2) Brief synopsis of the work done by the Task Force; 3) Briefly address the issue of the numbers. Mention there is no way to make sense of the numbers. Many studies and pieces of literature from different sources were reviewed and discussed, questions remain regarding the significance or reliability of the numbers; 4) Recommendations; 5) American Academy of Pediatrics’ guidelines for diagnosis and treatment; 6) Approximately one half page explaining the Positive Behavior Support Program; 7) Approximately one half page explaining the Prescription Monitoring Program; 8) Approximately one half page explaining the role of the school personnel; and 9) Copies of minutes from all meetings.

CLOSING It was determined that the Task Force will not meet again. A draft report with recommendations will be circulated to the members for comments. It is anticipated that the report will be submitted in early to mid-January.

The meeting was adjourned at 4:00 pm

Respectfully Submitted by: Debbie Puzzo December 6, 2004 6 For the Nov. 22 meeting -Submitted by Kathleen Allen

In the last meeting minutes, it was stated that Linda Wolf suggested that Delaware’s numbers are higher because we do a better job of reporting. I need to point out that these numbers are not reported by Delaware. They are generated by drug sales to the state as reported to the DEA from the manufacturer through an automatic system. The same system reports for all states. I want to add for the official minutes that a ranking of all 2994 counties in the US was completed by the Cleveland Plain Dealer newspaper using data obtained through ARCOS through the Freedom of Information Act. New Castle County ranked 84 (top 2.8%). Sussex and Kent rated 649 and 651 respectively. The data reflects drug consumption from 1997 through 1999. Dr. Tynan’s Friday posting indicated we had estimates of 15% prescription rates for stimulants based on parent report. I am curious, from when and where did this number come? I also want to point out that Dr. Safer’s comment on the ARCOS number holds true for many states, but not the higher users (in my opinion). ARCOS data is available for every year between 1997 an 2002. Of the top ten users for methylphenidate in 2002, six states made the top ten list for all years reported. Delaware has been in the top six for every year reported. For DL-amphetamine and D-amphetamine Delaware is even more consistent, making the top four for both drugs in all years reported. Dr. Safer recommended that we look at the study by Cox from Pediatrics Feb. 2003. I had given a copy of the abstract of that article to all members at the first meeting. It does state that “compared with children living in the Western region of the country, children living in the Midwest and South were more likely to consume at least one stimulant medication”. It doesn’t mention the East Cost. The final conclusion is geographic variation despite controlling for important predictors such as age and gender. I included it for that reason. But it only reported on geographic variance in the US. It does not address that large geographic variance can occur from community to community in the same state. According to the rankings from the Cleveland Plain Dealer, in a small state like Massachusetts some counties rank very high (no. 2 for Martha’s Vineyard, and some much lower (no. 834 for Hampden). Therefore any ranking by state may not accurately reflect what is happening in every community. There still may be under diagnosis and over diagnosis. The full text of the article does not provide a ranking for NH, VT, IA, DE or SD due to small sampling numbers in those states. These states are in the top ten users for methylphenidate for 1999 (the year studied) per ARCOS. The most consistent numbers I have found for the prevalence rate of ADHD (as diagnosed by the AAP recommended criteria) seems to be 3-7%. I would like the panel to comment on what levels would indicate possible over diagnosis in their opinion. I have also noted in many studies that medication rates for minorities are lower than that of white children. Dr. LeFever’s study provided by Dr. Tynan indicates an overall medication rate of 8% and 10% of students in grades 2-5 in the districts she studied in Virginia. This broke down to 16.8% and 16.6 % of white males being medicated, versus 9.1% and 8.9% of black males. Dr. LeFever concluded that this represents over diagnosis. Does the panel feel that this ratio could be similar for Delaware? Does anyone believe that 16.6% is an appropriate rate for any group? I hope the Prescription Drug Monitoring Plan that everyone seems to agree on is up and running soon. I assume it will give us accurate numbers for age and sex and allow sorting by zip code. My strongest recommendation is for this program to be in place as soon as possible. I know there has been considerable disagreement with my recommendations as they may fall outside our charge in the task force. Actually, I don’t know that we were charged with making recommendations. I provided mine because we were asked by the chair at the last meeting to do so. I am trying only to get information to parents. Nothing I have recommended would come between a student in need and medication the parent and the physician feels warranted. Everyone seems to agree that teacher’s putting their concerns in writing is a good thing. But there is resistance to making them accountable for the number of referrals they make. This is important. If referral for children they think are in need is part of their job, they need to be held accountable for it. It will not single out any teacher that is not making higher than expected referrals. If a teacher is referring 5 out of 10 boys every year, 7 they need more education on the subject. Teachers should never be allowed to recommend treatment. I have a B.S. in Medical Technology, advanced certifications and over 20 years experience in transfusion medicine and am in no way qualified or allowed to recommend transfusion treatment to a patient or parent even though I have an educated opinion. I may be fired for doing so. Because the diagnosis is subjective, because there is wide geographic variance in the diagnosis rates in different communities and studies have indicated over diagnosis, it appears to me that a parent has a right to know the controversy and the diagnosis rate in their community. But I understand this information would be hard to agree on and disseminate, so I can see why it may not be practical. Is there anything in place now to prevent over diagnosis? I have always felt the checklists to be misleading. They offer scales of what can be normal behavior and ask the parent to rate their child. But they are only supposed to rate the behavior if it is maladjusted or age inappropriate. If the parent isn’t given the proper directions or doesn’t read the directions clearly, they are likely to over rate their child's symptomatic behavior. Can anyone in the group offer anything to give parents better guidance? Even being given a brief written explanation of the AAP guidelines would be helpful to a parent going through this process. I was given all needed information at AI duPont but this may not be standard. Although it was not in the last meeting minutes, I believe Dr. Policastro mentioned that pediatricians and doctors are not paid for sufficient visits to do the job as recommended by the AAP guidelines. This may also be an important part of the problem. Full work ups as provided by AI duPont are not always covered by insurers. AETNA, the insurer that covers Dupont Inc. no longer covers this. ************************************************** 8 Submitted on January 3, 2005

I had requested a data search for all of our duPont Pediatric Practices in Delaware for ADHD diagnosis and stimulant prescriptions for all children between the ages of 7 and 12 (to compare with the often cited North Carolina studies) back when we started this.

The initial data was just sent to me from Nemours NCMP in Jacksonville, but the preliminary findings were based on this sample of 25,145 children between 7 & 12 seen in our practices in 2004, 3.3% have a diagnosis of ADHD, which fits with my clinical experience in the primary care clinics. This is also somewhat higher but in the same ballpark of a study I did about 6 years ago in a large practice in Anne Arundel County Maryland, where we had 2.9% formally diagnosed with ADHD, but about 8% of kids idenitified by parents on checklists as having ADHD symptoms.

This points to the importance of the type of data that we look at. Many of the studies with higher reported rates used parent report of a diagnosis, school nurse report of a diagnosis and prescription, or the estimates derived by amount of drug prescribed divided by the number of children. Ultimately, I think, surveying practices and finding out how many children are actually diagnosed with ADHD and number of prescriptions written, for children, would be the most reliable data source.

Why other methods have much higher rates reported is something I cannot quite explain.

W. Douglas Tynan, Ph.D., ABPP