Monday, August 22, 2016

The US Dept of Education's new "Dear Colleague Letter" Addressing ADHD

There is a new "Dear Colleague Letter" that was issued by the US Dept of Education on 7/26/2016, which specifically addresses ADHD and the obligations of school districts to evaluate and provide appropriate related aids and services. This is, in my opinion, a very important letter to get out there because many districts are refusing to evaluate students, as confirmed in the letter. A link to the PDF copy of the letter and Resource Guide (42 pages in total) is below. It should also be made clear and kept in mind that parents of the student are members of the child study team.

"The failure to provide needed services to students with disabilities can result in serious social, emotional, and educational harm to the students involved. It can also unnecessarily drain school district and family resources if the school is ineffectually attempting to meet the needs of students with disabilities through failed interventions or disciplinary consequences. 
As outlined in the Department’s regulations implementing Section 504, school districts must conduct individualized evaluations of students who, because of disability, including ADHD, need or are believed to need special education or related services, and must ensure that qualified students with disabilities receive appropriate services that are based on specific needs, not cost, and not based on stereotypes or generalized misunderstanding of a disability. These and other Section 504 obligations apply to all students with disabilities and are discussed in this guidance as they specifically pertain to students with ADHD." 

I also believe it is important to reference the 4/17/15 Dear Colleague Letter, as well as the other 2 prior letters referenced in same ("Letter to Delisle" from 12/2013 and "Letter to Anonymous" from 1/2010), which address children with both disabilities and high cognition ("Twice Exceptional").  Intelligence is also used as an excuse not to evaluate, although it is not a valid one.

"I am writing to draw your attention to the Office of Special Education Programs’ (OSEP) December 20, 2013 letter to Dr. Jim Delisle (Letter to Delisle) regarding determining eligibility for special education and related services under the Individuals with Disabilities Education Act (IDEA) for children with disabilities with high cognition; students who Dr. Delisle terms “twice exceptional students” or “2E students.” Letter to Delisle pointedly addresses children with high cognition who may be eligible for special education and related services as a student with a specific learning disability, but also cites to the broader requirements in 34 CFR §300.304(b)(1) and (2) that state, in part – 
 … in determining whether a child has a disability … the IDEA requires the use of a variety of assessment tools and strategies to gather relevant functional, developmental, and academic information about the child, and prohibits the use of any single measure or assessment as the sole criterion for determining whether a child is a child with a disability and for determining an appropriate educational program for the child.” 
In spite of the guidance provided in Letter to Delisle, we continue to receive letters from those who work with children with disabilities with high cognition, particularly those with emotional disturbance or mental illness, expressing concern that some local educational agencies (LEA) are hesitant to conduct initial evaluations to determine eligibility for special education and related services for children with high cognition.
In transmitting OSEP Memo 15-08, I am requesting that you widely distribute Letter to Delisle to the LEAs in your State, and remind each LEA of its obligation to evaluate all children, regardless of cognitive skills, suspected of having one of the 13 disabilities outlined in 34 CFR §300.8" 

The 12/2013 "Letter to Delisle," which is referenced in the 4/2015 letter, is located here:

The US DOE has the two letters (4/2015 and 12/2013) together in one document here:

Information about the 1/2010 Letter to Anonymous is located here:

The difficult-to-locate DOE copy is here:

The specific sentence in the 1/2010 letter that I really want to draw attention to is this:
"For example, a child with high cognition and ADHD could be considered to have an 'other health impairment,' and could need special education and related services to address the lack of organizational skills, homework completion and classroom behavior, if appropriate."
"In your letter dated October 8, 2009, you specifically referenced students with high cognition and disabilities such as Attention Deficit Hyperactivity Disorder (ADHD), Asperger's Syndrome, and specific learning disabilities related to reading, writing, and mathematics who struggle to timely complete grade-level work and have difficulties with organizational skills, homework completion, affective areas, social skills, classroom behavior, reading and math fluency, writing and math operations.
The IDEA is silent regarding "twice exceptional" or "gifted" students. It remains the Department's position that students who have high cognition, have disabilities and require special education and related services are protected under the IDEA and its implementing regulations. Under 34 C.F.R. §300.8, a child must meet a two-prong test to be considered an eligible child with a disability: (1) have one of the specified impairments (disabilities); and (2) because of the impairment, need special education and related services. For example, a child with high cognition and ADHD could be considered to have an 'other health impairment,' and could need special education and related services to address the lack of organizational skills, homework completion and classroom behavior, if appropriate. Likewise, a child with Asperger's Syndrome could be considered under the disability category of autism and the individualized evaluation would address the special education and related services needs in the affective areas, social skills and classroom behavior, as appropriate."

One would hope that districts would go back and review previous denials when letters such as these are issued, but it is up to the parents to request evaluations if the student is thought to be eligible, even if prior requests have been erroneously denied.
I have not written in a long time. My son's EoE is under control with medication and he is now an adult, so I doubt I will be posting too much more, if anything, regarding any new personal experiences. I may, from time-to-time, mention new information, but for the most part, I am no longer as involved in the eosinophilic community, so I may not be timely in those posts. I will, however, post other information that I find important, which may also apply to those in the eosinophilic community, as well as others.

Tuesday, October 2, 2012

Upcoming CURED / Cincinnati Children's Eosinophilic Patient Education and Research Conference

CURED (Campaign Urging Research for Eosinophilic Disorders) and Cincinnati Children's Hospital are co-hosting a patient education and research conference on November 2nd - 4th, 2012 for physicians, scientists, nurses, social workers, medical care team members, patients and families, regarding diagnosis, therapy, psycho/social aspects and the science of eosinophilic disorders.

The purpose of the conference is "to share and gain knowledge in the emerging field of Eosinophilic Gastrointestinal Disorders (EGID), including eosinophilic esophagitis".

The conference will take place at the Main Campus of Cincinnati Children's Hospital (Burnet Campus) at 3333 Burnet Ave, Cincinnati, OH.

According to the CURED website, the conference objectives are as follows:
  1. Present updates on the diagnostic criteria for eosinophilic disorders
  2. Discuss the latest research advances in eosinophilic disorders and their application to patient care
  3. Discuss the psycho/social factors faced by families and patients and how to apply to better disease management
  4. Enumerate Therapeutic options and resources for patients who have EGID

The registration form lists the conference agenda, which is as follows:  

Friday, November 2, 2012 
  • 8 am - 5:30 pm - Research and continuing education seminar for (ages 13 and older only).  Childcare arrangements will be made for children 12 and under. CME credit is available for this seminar.

Saturday, November 3, 2012 
  • 8 am - 5:15 pm - Patient education conference.  The conference will include lectures by those involved in GI, allergy, psychology, nutrition and more. 
  • 7:30 - 9:30 - Meet and Greet at the Radisson Hotel Cincinnati Riverfront (different location than the conference).

Sunday, November 4, 2012 
  • 9 am Continental Breakfast and Lecture by Dr Marc Rothenberg

If you would like to register for the conference, the registration form (which also lists the conference fees) and an option to pay the conference fees online are available via the CURED website.

Monday, September 24, 2012

Proposed Pennsylvania Infant and Children's Health Initiative Act

I am using today’s blog post to pass along an important plea for assistance from PA residents to help get important legislation passed.


PA State Representative Dan Truitt has introduced a bill, the “PA Infant and Children's Health Initiative Act”, within the PA state legislature.  This legislation would mandate that insurance companies cover the cost of elemental formula, an amino acid-based formula with no intact food proteins. Families dealing with Eosinophilic Esophagitis (EoE) and other Eosinophilic Gastrointestinal Disorders (EGID) will understand how HUGE this is.

Many people with this disease react to so many foods that they can eat little to nothing and rely on this formula to keep them healthy. Since there is nothing in it for those with EoE / EGID to react to, use of this formula allows the GI tract to heal while also providing the patients (primarily children) with the nutrition they need. Some patients are able to drink it, although the taste makes it very difficult to do so. Some patients need enteral feeding tubes for the same formula. Unfortunately, many insurance companies do not cover the cost of this formula. For many families, the monthly cost of elemental formula can be equivalent to a mortgage payment.

This bill will mandate insurance companies to cover this for PA residents. I urge you, whether you have a child with an Eosinophilic Gastrointestinal Disorder or not, PLEASE CONTACT your local representative and urge him or her to please co-sponsor this bill. You can find your representative's contact info here:

Please, share this information and send this request to your family and friends. There is only a week to find 7 additional PA representatives to co-sponsor so this bill will move along to the state senate.  Below is a sample of a letter that you can use to write to your state representative.  If you do choose to get involved, those of us in the Eosinophilic Community (patients and their families) thank you very much.

Dear (insert the name of your representative):

I urge you to support the PA Infant and Children's Health Initiative Act, introduced by State Representative Dan Truitt, providing coverage and reimbursement for amino acid/elemental based formulas regardless of delivery method. Amino acid/Elemental formula is the most effective treatment as proven by medical research. Insurance coverage will have a direct and immediate impact on improving the quality of life of families living in the Commonwealth of Pennsylvania.

Thank you for supporting our family and helping all children living with these debilitating diseases.

(or Thank you for supporting families who suffer from these debilitating diseases.)

Tuesday, August 21, 2012

Important New Educational Advocacy Resources for the Eosinophilic Community

Many of us struggle as we advocate for our children in school, trying to make sure they have appropriate modifications and accommodations as needed for their Eosinophil-Associated Gastrointestinal Disorder (Eosinophilic Esophagitis and other EGIDs) and receive a Free Appropriate Public Education (FAPE) according to the law.  For many parents, it's overwhelming and we may not even know where to start.  We might say something like "I don't want to rock the boat at the school but I want to make sure my child is safe and isn't left out."  We also might ask:

Years ago, I was one such parent and it took far too long to figure it out on my own.  Thankfully, there are new resources available to assist parents with educational advocacy.

Just in time for the new 2012 school year, APFED has added very helpful videos/webinars to their website as well as their YouTube channel and will be adding more in the near future. Some of the available videos and webinars now include: 

APFED now also has a specific section for School Advocacy, which includes resources prepared by an educational advocate in Georgia who has experience helping parents obtain necessary modifications and accommodations for their children with Eosinophil-Associated Disorders (EoE / EGID):

Please take time to visit each of the above helpful advocacy links if you are potentially in need of a 504 plan or IEP for your child with EoE / EGID.

FAAN also has a new educational advocacy resource in the form of an Ask The Expert Q & A with Pete Wright of Wrightslaw. While the majority of the information on the FAAN website is available to everyone, this particular web feature is only available to registered FAAN members at:

The NJ/PA Eosinophilic Information site has recently been updated with additional links and resources, but more updates are coming soon.  Please remember to visit the Advocacy section for additional educational advocacy information and resources or you could just click on the Advocacy Info page of this blog.

Some of the resources that have just been added include:

Office of Civil Rights info about Section 504/ADA

Americans With Disabilities Act Amendments Act of 2008 (provides broader coverage)

Does a Child Need an IEP AND a 504 plan? The answer is “No”.

Migraines, Medication and Missed Instruction – Requesting Eligibility
This information can be applied to other medical issues, including Eosinophil-Associated Gastrointestinal Disorders.  There is also a template for a letter to the school, requesting an identification meeting.

SPAN (Statewide Parent Advocacy Network) of NJ:

Please be sure to pass along any other new resources you might have that apply to those in the eosinophilic community!  Your comments are always welcome!

Sunday, May 6, 2012

Interview about Eosinophilic Esophagitis on 93.3 WMMR in Philadelphia

Thank you, 93.3 WMMR in Philadelphia, for doing a wonderful, detailed interview with Dr. Jonathan Spergel of Children's Hospital of Philadelphia and the Harris Family about Eosinophilic Esophagitis (EoE) and their upcoming fundraiser for The Center for Pediatric Eosinophilic Disorders at CHOP.  The Harris Family is doing a wonderful job of educating the public and raising awareness about eosinophilic gastrointestinal disorders!

The interview can be heard at WMMR's website via the following link:

Public Affairs - Eosinophilic Esophagitis - Weekends Blog | 93.3 WMMR: Everything That Rocks

The fundraiser, "Food Phight 5K", will be held on Friday, May 18th, 2012 at 2 North High Street in West Chester, PA.  Registration begins at 6 pm.  More information about the fundraiser can be found at or

From the fundraiser's page on CHOP's website:  "CHOP's Center for Pediatric Eosinophilic Disorders currently treats 1100 infants, children and teenagers with an eosinophilic disease - the largest clinical population in the world.  Patients come from all over the U.S.  This clinical population provides an extensive source of data for research.

Currently, CHOP is leading 11 different research studies related to eosinophilic diseases and they are collaborating with other world class institutions. These advances offer high hopes for children who are suffering.  However, ongoing research costs a lot of money.  That's why we need your help."

I am also the parent of a child who is treated by specialists at CHOP's Center for Pediatric Eosinophilic Disorders and I have been very involved in the eosinophilic community for 8 years.  I can personally attest to CHOP's devotion to their patients and to research.  Please consider donating.

Friday, May 4, 2012

The G-tube is out!

I wanted to write a quick update with some big news:  Tonight, after 7 years, my son's G-tube is finally out!

He has been back on Flovent for a month with an unlimited diet and is doing well.  He had lost too much weight when he was back on his safe diet at the beginning of the year, so I was not sure that it was a good idea to remove it yet.  However, with the Flovent (swallowed, not inhaled), he is eating well, gaining the weight back and is growing again.

At his last appt (2 days ago), he had gained 6 lbs and grew another inch, so I knew it was the right time.  I want him to heal before the summer, and it can take 3 weeks for the stoma to close, which will take us to the end of May.

I didn't give him any advance-notice because that would have made him too anxious.  He was anxious enough as it was.  I just told him it had to get done and I did it.  The stoma is clean and covered and hopefully it will close up quickly.

While I didn't make a big deal about it because he was so nervous, this is a very big deal!   I had envisioned a big celebration when it happened, so it is a bit anti-climactic, but that's ok.  That part of his life is now behind him and he has a new chapter waiting to be written.

He only has a few more foods to trial, so we're going to do one a year.  We'll start in January and scope in April, just before his birthday, as we did this year.  That will give him a break from his Flovent and allow him to finish the remainder of his food trials while minimizing his procedures.

For now, while he is on the swallowed Flovent and it is working, he can eat anything he wants, so I am focusing on increasing his intake as well as expanding his repertoire.  So far, I am very pleased with how well he is doing and I hope he continues to do well.  He has overcome great hurdles and is now thriving.  There is finally some semblance of normalcy.  I am a very happy mom.