Justin Herbst from Illinois has been invited to testify at the U.S. Senate Committee on
Health Education Labor & Pensions in Washington, D.C., this Thursday. The hearing
subject matter is: Fulfilling the Promise, Overcoming Persistent Barriers to Economic
Self-Sufficiency for People with Disabilities
Justin will be one of 5 people with disabilities presenting today!
His comments are below.
I’m on my way to Springfield for a meeting with Directors Case and Romano.
Good Morning Senators,
My name is Justin Herbst. I am honored and humbled to be with you today in
I have cerebral palsy because I was born 10 weeks early and I had a serious stroke
when I was only three days old. My disability has never deterred me from achieving
I am the perfect example of what the Individuals with Disabilities Education Act can
do for American children. I grew up in Western Springs, Illinois where I was fully
included in regular education classes since Kindergarten. Throughout school, I was
encouraged to compete with my able-bodied peers. I had an Individualized Education
Plan and received PT, OT, Speech and other Special Education services.
I made plenty of friends and never felt excluded because of my disability. After
graduating from Lyons Township High School, I attended Southern Illinois University
thanks to a Pell Grant from the Department of Rehabilitation Services (DRS).
Southern Illinois University is a great school and gave me many opportunities to
grow as an individual. While at Southern Illinois, I received help through the Disability
Support Services Office including extra time, note-takers and alternative test sites.
I am proud that I graduated with a Bachelor’s Degree in History, a minor in Philosophy,
with a solid 3.49 GPA.
The U.S. Government has assisted me tremendously in helping me get to where I am
Through the Department of Rehab Services, I have a Personal Care Assistant to help
me get in and out of bed, toilet, dress, shower, cook and clean. I will always need the
support of a personal care attendant, because I am a quadriplegic and I cannot move
on my own. It is difficult to be a quadriplegic, but it is the life I live and I would not
trade it for any other.
During college when I was not working, I received Supplemental Security Income,
which was approximately $670 a month, to help me live independently. I always knew
SSI was a temporary solution because I wanted to join the workforce and make own
After graduating from Southern Illinois University, I found a wonderful job working at
UPS at the Hodgkins, Illinois Facility. The UPS Chicago Area Consolidation Hub is
the largest ground package sorting facility in the world. UPS is approximately 4 miles
from my home. As a UPS employee I receive benefits like medical insurance, dental
and vision insurance, vacation time, continuing education and job training. I am also
eligible to receive 3 1/2% matching contributions from UPS to a 401(K) retirement plan.
UPS has been incredibly accommodating regarding my disability – they understand my
disability and my strengths – and I have always felt like a strong part of the UPS team,
able to give back and work independently.
Since becoming an employee of UPS, I no longer receive SSI benefits – I am now a
Last year I earned $27,800.00 working at UPS and paid $6,000 in taxes: $4,500 to the
Federal Government and $1,300 to the State of Illinois.
I am thankful for my parents, family, friends, teachers, therapists, co-workers, and the
United States Government, who have all helped me become the man I am today.
Despite all of the successes I have had in my life, I still face glaring problems in
keeping my job:
I am not eligible for transportation services from the PACE Disability program because
of where I live. My parents must drive me to work every day. If my parents could not
drive me to work every day, I would not be able to keep my job.
Also, I cannot fully participate in UPS’s employer sponsored 401(K) retirement plan like
other employees. If I have over $2,000 in assets I will lose my Medicaid benefits; and
more importantly, if I have over $17,000 in assets I will lose my Personal Care
Attendant Benefits from DRS. If I lose my Personal Attendant I cannot work, or even
get out of bed! It is unfair that I work hard at UPS and I am eligible for a retirement plan,
but the U.S. government does not allow me to save for my retirement like able-bodied
workers. If I save for my retirement, I risk losing the benefit that allows me to live an
independent, happy and healthy full life – my personal care attendants.
I encourage the HELP Committee to eliminate access barriers to transportation,
housing and saving for our retirement, so that people with disabilities can live the
Thank you for giving me the opportunity to speak with you today – it was an honor.
5028 Fair Elms
Western Springs, IL 60558
Tony Paulauski Executive Director
The Arc of Illinois
20901 S. LaGrange Rd. Suite 209
Frankfort, IL 60423