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ADVOCACY BEGINS AT HOME by Robert M. Tudisco, Esq.

ADVOCACY BEGINS AT HOME by Robert M. Tudisco, Esq.

While going off to college and becoming independent is difficult for all adolescents, it can be particularly difficult for students with attention deficit/hyperactivity disorder.
This is true for many reasons:
  • College is far less structured than high school and the lack of structure and accountability can be a recipe for disaster to an adolescent with AD/HD.
  • In most cases class attendance is not enforced, and there is much less performance feedback until midterm and final examinations.
  • Many of these students have never managed their medication and/or their lives and are unprepared to do so on their own.

As a result, many bright students falter on their own and either underachieve or face academic and behavioral pitfalls.

Part of understanding a child’s disability and its effect on his or her performance at school is including him or her in the learning process in a meaningful way.  Effectively advocating for your child also means teaching them to advocate for themselves.  From developing these advocacy skills at an early age, students in college can learn to feel comfortable discussing their disability with their academic advisors, deans, and campus disability office.


IDEA v. 504 & ADA

            Laws that protect students with disabilities are not the same for college and graduate school students as for younger children.  In many cases, neither students nor their parents is aware of the difference in the legal protections that students have when they leave high school.  Up to high school graduation, students with disabilities such as AD/HD may have been protected under either the Individuals with Disabilities Education Improvement Act (IDEA), or section 504 of the Rehabilitation Act of 1973 (Section 504).   Both IDEA and Section 504 include provisions known as “child find”, that confer a responsibility on school districts to seek and evaluate students and provide services for their special needs.  The burden is on the school district to identify these children, evaluate them and provide appropriate services.  A failure to properly identify a child’s disability is considered a violation of the statute as much as the failure to provide a free appropriate public education (FAPE).

When individuals become 21 or graduate from, or leave high school, “child find” no longer applies.  While Section 504 and the Americans with Disabilities Act (ADA) mandate that students shall not be discriminated against based on their disabilities, individuals now have the obligation to come forward and provide documentation of their disability and request appropriate accommodations to achieve “equal opportunity based on one’s individual needs.”

Here again, a thorough evaluation and a working knowledge of the law and the students’ disability is crucial as is the ability to effectively communicate their needs to the school.  Just as critical is the need for current documentation including proof of disability in high school and proof of the necessity for accommodations. Depending on the institution, some post-secondary schools (colleges and universities) require formalized testing or evaluation-something not required in public K-12 schools.  Standards and documentation are different at the post-secondary level, and court cases have upheld the right of post- secondary institutions to require more specific data.

Unfortunately, many children with ADHD are ill equipped to communicate their needs to the schools since, in most cases, these children have not taken a meaningful part in the advocacy process.  In seeking to protect their children, parents often do not involve them in identifying their own needs and seeking services.  Far worse than not involving their children in the process, many parents will teach their children, by example, that their disability is a closely guarded secret that should be kept from the rest of the world.

Often many parents either fail or refuse to openly discuss their children’s disability with them and seem more concerned with labels than with teaching their children to understand and advocate for themselves.  Trying to minimize the stigma associated with a diagnosis of ADHD may prove harmful later on when specific documentation is required for reasonable accommodations in college, graduate school or even the workplace.

Children’s active participation in the advocacy process can be incredibly empowering experience and will actually make the transition much smoother when a situation calls for them to advocate for themselves.

 FERPA the Double Edged Sword

            Another legal consideration that must be considered is that of the student’s right to privacy.  The Family Education Rights and Privacy Act (FERPA) was enacted to ensure that parents have access to their children’s educational records and to protect the privacy of students by limiting access to these records without parental consent.  Many parents enjoy the protections that FERPA provides them and their children but don’t truly understand its scope.  Parents control access to both access to records and restriction of that access while their children are underage.  The privacy rights conferred by FERPA, however, automatically transfer from parent to student upon the student’s 18th birthday, or upon his or her entrance into a post-secondary institution, at any age, unless the student is still declared a dependent for tax purposes.  This puts parents at a distinct advantage in that the rights they once enjoyed can potentially be an obstacle to their intervention.  Without access to their children’s educational records, parents are unable to spot potential difficulties as they arise and may be unaware when their children are failing classes or in danger of academic probation.

Therefore, children should be taught to understand their disorder, spot potential difficulties before they become insurmountable and learn how to obtain the necessary accommodations.   The importance of promoting self-advocacy in children cannot be stressed enough.   Advocacy begins at home, however unless parents involve their children in this process in a meaningful way and teach them to advocate for themselves, their efforts will go no further.

Below you will find some practical tips on how to encourage self-advocacy in children with ADHD.  While following these tips will not guarantee your children’s success, encouraging your children to advocate for themselves can maximize their chances.  Above all, help your children realize that they are not alone and that many students are struggling with challenges that come with having ADHD.


  Practical Tips to Encourage Self Advocacy

  • Don’t hide the AD/HD diagnosis from your children.   As early as possible, discuss AD/HD with your children.  Encourage them to understand themselves and their needs.  This is also an excellent way to learn about your child’s disability from their point of view.
  • Involve your children in designing accommodations.  Speak openly with your children and ask them to articulate the specific challenges they face in school and suggest what will help them.  This will give you a factual basis for requesting the accommodation and it will empower your children to understand that their opinion is valuable and that they can make a difference.
  • Bring your children to team meetings.  Depending on the age and maturity of your children, their presence at the meeting can be helpful.  It will educate them on the process and help humanize the setting while keeping the adults focused on the goal.  This is especially important in developing a transition plan as the children get older.  The transition meeting can be a way of passing the torch of advocacy to your children as they approach college or vocational training.
  • Set up a game plan with your children for college.  Work with your children before starting college to understand the differences between high school and college and help them prepare for the transition.
  • Make sure they know where the disability office is.
  • Encourage them to articulate their particular needs and familiarize themselves with appropriate services and accommodations.
  • Encourage them to seek a coach or mentor to help them set up their own structural support and accountability system.
  • Help them set up local support with a therapist and/or psychiatrist to manage medication away from home.  This is particularly important as their age and changing environment may affect their medication plans.



*previously published in Attention Magazine October 2005