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Hi,

If you know college or graduate students with celiac disease, you might want to pass on this press release to them. KASA, an organization of student advocates with special healthcare needs, is gathering feedback about the extra, disability-related expenses some college and graduate students face, and the ways that disability impacts the school financial aid process. If students feel that their "cost of attendance" (the basis of financial aid packages) is higher because of their special diets and medical expenses not covered by their insurance company, then that is relevant information for advocates and lawmakers to know about. The bill that funds college and grad school financial aid is being considered and reauthorized by Congress this year, so it's a good time to let them know of students' special needs and the ways Congress can help.

Feel free to put students in touch with me or with the contacts in the press release below if you think they'd like to contribute their stories and comments, or might want to participate in student advocacy.

Rebecca Moore


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KASA: Kids As Self-Advocates

Youth with special healthcare needs speaking on behalf of ourselves and our friends

For Immediate Release

Contact:
Christina Mills, [log in to unmask]
Julie Sipchen, 773-465-3200, [log in to unmask]



Is Anybody Listening?

Students with Disabilities Seek to be Heard as the Higher Education Act is Reauthorized



College and graduate students with disabilities are struggling to receive necessary support services in order to achieve the same level of educational and financial aid as our non-disabled peers. KASA (Kids As Self Advocates) is working with other grassroots youth groups toward solutions to the obstacles students face.

We call on the disability community to recognize that access to higher education is a key concern for many of its members and to focus on removing financial barriers through advocacy & legislation.

Students will not accept these barriers anymore. This summer and fall Congress will debate the reauthorization of the Higher Education Act. Time is of the essence. We need your help to illustrate the links between education, independence, and financial barriers – to bring disability issues into this policy discussion while there is time to make a difference.

Please become a leader in this effort: Help us make disability issues a key part of the Higher Education Act reauthorization. Talk with others in the disability and education community about the barriers college and graduate students overcome, their disability-related expenses, and the financial aid process. Request a copy of our Higher Education Act public policy recommendations by e-mailing us at [log in to unmask] Share them with the advocates, students, and government officials you know.

Write to us with your comments and encourage other students with disabilities to do the same.

We will use your feedback to make our voices (youth voices) heard!


It is challenging for many students with disabilities to qualify for financial aid and to pay for support services not provided by their campuses or other agencies. Students write:

"As someone who is hearing impaired I require more time to complete my work than the average student. ... All of this extra time takes away my chance to have a job"

"I have received little help from my financial aid office as far as my disabilities are concerned. ... I am unable to perform work-study because I lack the stamina needed, so my debt will be substantial - around $100,000 when I graduate. ... My financial aid package is not sufficient to cover my medical costs and thus we went on Medicaid to help."

"Because I couldn't do a 9 to 5 and go to school full time ... I had to have student health insurance. Student health insurance will not cover pre-existing conditions for the first year. Therefore, my expenses for my asthma shot through the roof to about $700/mo." (Students also describe out-of-pocket expenses for academic tutors, readers, personal attendants, drivers, captioned videos, TTYs, medications, medical travel, rehabilitation services, and assistive technology.)

"I am a college student 1/2-3/4 time. I can't do much more than that...and I am having a hard time keeping up with my work. I have taken out financial aid loans and am worried how I will pay them back on a fixed income. I also don't know if when I am finished if I will be able to work"

"The conditional forgiveness of my pre-disabled Perkins Loan is dependent upon me falling below the poverty level in Kentucky for three years. ... If my disability causes me to fall below half-time I will not be eligible for Stafford aid."

"Unfortunately, loans may be the only possibility because many disabled students cannot take a full time load that makes them eligible for grants."


KASA is a national, grassroots network of youth with special health care needs & disabilities. The KASA project of Family Voices was established to promote and improve the lives of youth with disabilities and chronic health conditions through peer empowerment and advocacy and the development of leadership opportunities. We also encourage youth to become more involved in policy-making and implementation as it relates to their health care, employment, education and other issues.

Our project is designed for youth and young adults with chronic health conditions &/or disabilities, their friends and siblings, who wish to learn more about the disability movement, health care advocacy and management, employment strategies and opportunities and the development of a national network of teens dedicated to peer education, leadership and empowerment. Find out more about us on www.fvkasa.org, and www.familyvoices.org.


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Youth with special healthcare needs speaking on behalf of ourselves and our friends

Visit us on the web: www.fvkasa.org

KASA / Family Voices 1400 West Devon, #423, Chicago, IL 60660
Ph: 773/465-3200 Fax: 773/465-3696 E-mail: [log in to unmask]




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