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AHEADD, Autism, and Higher Ed Supports

A week ago I travelled into Pittsburgh, PA, to meet with Heather and Paula from AHEADD, an organization that provides additional supports beyond what colleges and universities offer to students with cognitive differences. These were impressive and energetic women dedicated to working with students. Heather earned an MSW from the University of Pittsburgh and Paula has an M.Ed from Ohio University. The sad reality is that many of our colleges and universities do not have such qualified people working with students with ASDs, ADD/ADHD or other neurological challenges.

AHEADD was founded because even great universities cannot meet the perceived needs of some students:
Carolyn Komich Hare founded AHEADD in 2002, when she piloted the program in response to a parent's inquiry regarding the availability of specialized support for her daughter, a student with Asperger's Syndrome who would be returning to Carnegie Mellon University following a year's leave. 
AHEADD Provides:
Coaching, Mentoring & Personal Advocacy for College Students with:
  • Asperger's Syndrome
  • Attention Deficit Disorder (ADD)
  • High-Functioning Autism
  • Dyslexia
  • Learning Disabilities
  • Non-Verbal Learning Disability (NVLD)
(http://www.aheadd.org/about.html)
Understand that there are not many students in higher education in need of intensive supports. Realistically, we cannot expect universities to meet the needs of every student, though that might be the ideal. People don't always realize it, but even federal law recognizes that the costs to support a student with special needs must be "reasonable" (and that's not defined in the law) based on the institution, its access to support experts, and its financial resources. Yes, a university can use "We cannot afford to provide supports" as a legal defense in some cases. They have to make a "best effort" but courts get to decide what is a good effort to support a student.

That lack of qualified and intensive supports is why I was interested in learning about AHEADD, which is the leading independent provider of supports in Western PA. As I have written in the past, institutions of higher education are facing budget cuts that often affect disability services (DS), faculty training, and other supports for students with special needs. Many institutions, including ones I have toured in a few states, have created "Residential ASD" programs. However, colleges charge extra for these programs. In some cases, the additional charges are equal to or greater than the fees charged by CLE, AHEADD, and other private fee-for-service organizations.

I now teach at a small private university in PA. Our disability support director is also an instructor in the Dept. of English and the School of Education. Like many faculty at smaller schools, she must "wear many hats." At the large R1 I attended for my doctorate, the situation is not "better" for students, as the DS office has faced cuts and increased case loads for DS advisers. Whether the campus has 3000 students or 50,000, it seems that DS is an obligation they struggle to provide.

Most parents and students I meet don't realize how challenging the higher education setting is, especially in an era of cuts and consolidation within institutions. Colleges and universities are ending degree programs, closing smaller "schools" within universities, and trimming anything deemed "extra" by administrators, donors, and state officials.

If a student needs extra supports, this means private organizations might be the best option. Allow me to provide some information directly from the AHEADD website:

Mission - Individualized and Ongoing Support
Currently, accommodations in higher education lack consideration of characteristics that affect the ability of certain students to achieve their potential. While college accommodation plans provide excellent in-class assistance, students with Learning Disabilities, ASDs, AS, NVLD, and ADD require far more comprehensive, individualized, and ongoing support to address difficulties in the areas of organization, social skills, and communication. 
AHEADD's mission is to establish and maintain best practices which fill this void in a manner that respects students as adults, complements the traditional college accommodations plan, and maximizes use of existing campus resources. 
As AHEADD grows to meet the needs of a growing number of students across the country, it will continue to set the standard for exemplary support of exceptional students. We also intend to provide this support in consideration of families' financial burden. AHEADD currently charges a fee of $4200 - $5300 per student, per semester.
(http://www.aheadd.org/missionphilosophy.html)

The students I've met in Pennsylvania often pay $18,000 or more annually to attend state universities. Private universities can cost more. In Minnesota, my students often paid more than $14,000 in tuition, fees, and other expenses to attend a state university. I cannot imagine the "sticker shock" when a parent learns supports for a student might add $40,000 or more to the cost of an undergraduate education. I understand why many question the value of the investment. However, I also remind parents that supports developed by a program such as AHEADD might allow the student to receive less supports over time. To attend social skills groups, for example, might cost only a few hundred dollars instead of thousands.
AHEADD, CLE, and similar groups provide supports that address no only academic issues, but also the important social and life skills students with special needs will require for success and independence.
The AHEADD Model of Support Involves Four Core Elements:
1. AHEADD Professional Staff Involvement
2. Development of Campus and Community Support Network
3. Utilization of Campus Resources
4. Peer Mentoring
(http://www.aheadd.org/model.html)
I am not recommending AHEADD, CLE, or any program in particular. What I want students and parents to understand is that our institutions simply do not provide more than the basics required by federal and state regulations. We don't have the resources to provide the best possible supports. Sometimes we do provide enough for students succeed, but I have also met many young men and women who did not complete college or university educations. Some of the students I've met have enrolled in three, four, or even eight different institutions. I personally attempted to complete graduate school at least four times before finding the right mentors and a good environment for me needs.

I did meet with educational psychologists, neurologists, and other specialists along this journey. Such supports are not cheap. They are also emotionally demanding because it is easy to question your own abilities and self-worth when you need help. Being "smart" is not enough to succeed in college or in life. You also need interpersonal skills and social connections to succeed in life.

Without my wife and my family, I could not have completed my master's or doctoral programs. I also needed the help of an educational expert. If you are interested in the team that helped me deal with the university experience, they can be contacted at:
http://www.collegeautismspectrum.com/ 
Lisa King, M.Ed.
Co-director, Higher Education and Autism Spectrum Disorders, Inc.
Lisa King and her colleagues generally work with colleges and universities to meet the needs of students with ASDs. I do not know if they work with students and families individually, but they do have a book educators, parents, and students should read: Students with Asperger Syndrome: A Guide for College Personnel.

My meeting with AHEADD personnel does lead me to believe their services could help some students and families navigate the higher education experience. Heather informs me that AHEADD does work with families to reduce the out-of-pocket costs for AHEADD services and the organization is establishing scholarship programs. Some students also qualify for partial financial aid from state occupational therapy programs.

One reason I consistently recommend that families consider two-year community colleges and other options is to ease into the college experience. Students with special needs often do best when they start higher-education programs part-time, learning how to deal with professors and large institutions. I have also found that smaller colleges often provide more personalized supports, through unofficial mentoring. Simply having professors know you as an individual can be a big help when you have special needs. Larger institutions can be impersonal and inflexible.

I know high school juniors and seniors are already thinking ahead to college. If you have special needs, you also need to plan for ways to address those.

Comments

  1. Congrats to you for completing your Master's & Doctorate, your support group is amazing! I just recently became introduced to the realities of autism by being reacquainted with a college classmate that has an autistic son named Regal. Sadly, autism was only something that I had heard of until we crossed paths again this past spring when I became a member at her Church. Her name is Theresa Noye and she's a Contemporary Christian artist that has completely dedicated her life to autism awareness. Her music project "You Saw Me" represents times from her personal worship, drawing on her faith and her family’s journey, through autism with her son, Regal. All proceeds from this project will benefit Regal's Walk, a fund raising and awareness initiative in support of Regal's home therapy program. I would like to share a link to her video which features her autistic son, Regal. http://www.youtube.com/watch?v=VLWOPHNRQ3I

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