HH and College – Be your own best advocate!

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Jill NicoThis week we are meeting up with Jill Nico – the Program Advisor for Disability Resources and Services at Estrella Mountain Community College in Avondale, AZ. She assures equal access for students with disabilities, provides individualized coaching, and plans campus events related to disability issues for young adults. She has served in higher education in various roles, including adjunct faculty, for fifteen years. She is a wife and parent of two sons, including a son born with Down syndrome. She has twelve years’ experience supporting families of children with disabilities through organizations such as Raising Special Kids and speaks frequently on the parent perspective.

I caught up with her to ask her expert opinion on some of the information that may be confusing on college life.


What do individuals with HH, or other physical/cognitive challenges, need to know to be successful when advocating for themselves at the college level?

Most importantly, it would be to know your disability!

  • What is it?
  • How does it impact you?
  • What do you need to be successful?

You must be able to explain it – both in terms of the positive and negative impacts, as well as your strengths and weaknesses. In order to advise a prospective student, I need to understand how I can help you!


When should Transition planning begin and what should be included?

Transition planning, with or without a formal IEP, should begin in high school. For most states, the age is 16 – but the idea of the student understanding their limitations and asking for what they need – can start long before then. Students should begin advocating for themselves in a variety of situations to get comfortable with knowing when and how to ask. Parents are often very involved in high school but are not always welcome in the college setting. As parents, we walk a fine line between supporting our young adults and letting the student take responsibility for their education.


At what level are parents usually involved in the process?

I have no problem with parents being at the initial meeting with my office here at Estrella Mountain Community College. In fact, it can sometimes be useful to understand all the barriers the student may be facing. However, after the initial meeting, most colleges will not talk to the parent without the student being present or written approval – for obvious privacy reasons.


What are some things we should know about medical issues and the impact conditions such as HH and epilepsy can have on college success?

Seizures can certainly affect a students ability to not only be in the classroom everyday but medications and surgery can significantly impair memory and cognitive functioning. For students with these types of issues, I recommend having a discussion about seizure type and frequency, duration, and the effect on the student afterward. In some cases, we have put an attendance modification agreement in place stating how many classes a student may miss and still pass the class. Any missed classwork must still be made up in a reasonable amount of time. There cannot be any modification to the curriculum at the college level. It is all about “equal access” to service, buildings, etc. Reasonable accommodations are on a case by case basis, and not guaranteed to everyone without a documented need. Legally, we are under the guidelines of the Americans with Disabilities Act (ADA) and not Individuals with Disabilities Education Act (IDEA). Colleges provide what is reasonable, not necessarily what you think you need.


What final bits of wisdom would you like to share – to encourage and also prepare students with HH for success in college?

To be successful, I would say:

  • Develop and encourage self advocacy skills early!
  • Ask for help as well as feedback.
  • Emphasize your strengths and use your resources.
  • Be sure you have documentation about your disabilities from a medical provider.

When considering a college – meet with the individuals in the Disabilities Resource and Services Office ahead of time. They are on your side and want to help you be successful!


What has your experience been with college? Share with us what were/are your greatest challenges and perhaps some tips on how you were able to overcome those challenges!


Useful links on transition and student rights in college: 


  • Good information for students with disabilities going to college (nice short videos to watch)


  • US Department of Education Office of Civil Rights


  • Funding College for Students with Disabilities


  • AHEAD – where disability professionals at colleges collaborate


  • Document about the rights of students in college that have epilepsy


  • THINK COLLEGE – options for students who have cognitive or intellectual disabilities 


  • Students going to college with chronic health conditions