Another four hours of testimony was heard at the House Appropriations Human
Services Committee. This was the second such hearing by this committee because of
the crowds of individuals who want to make a public statement. I was take by the grace
and dignity of the individuals and families sharing very personal stories about the cuts
and how they would directly impact them.
None more stirring than Shirley’s which I am sharing with you below. While this is the
written testimony, please note that when giving testimony, you are not to read but
summarize your comments. Shirley you did very well.
Chairperson State Representative Greg Harris even gave Shirley a hug at the end of
the first session!
House Appropriations Human Services Committee
Testimony on Agency Budget
April 1, 2015
Mr. Chairman, Greg Harris and members of the committee, on behalf of my daughter,
and the many families that we serve through the Family Support Network of Illinois
(FSN), thank you for this opportunity to present this testimony reflecting our opposition
to the proposed state budget.
My name is Shirley A. Perez; I am the parent of an adult daughter, Tamekia who is
nonverbal, has a diagnosis of developmental and intellectual disabilities, autism and
seizure disorder. Thirty-nine years ago when she was born, there was NO Family Support
for me or my family; the only advice given to me was if I wanted any chance at a life to just
place her in an institution. Well, I did not take that advice! Although there were many years
of tears, isolation and struggles , Tamekia has never spent one day in an institution and
today with the proper supports she is enjoying a full life in the community. I am equally
excited to share with you that in my professional capacity I serve as the Executive Director
of the Family Support Network of Illinois.
The Family Support Network (FSN) represents individuals with disabilities and their
families’ statewide. By providing information and individualized advocacy support, families
are able to live integrated lives in the community. FSN disseminates information to families
in a manner that is family-friendly – this strengthens and supports the individual and the
family directly by responding to their individual needs! We are in jeopardy of losing these
supports with the elimination of the Arc’s Life Span Grant!
We realize that the Governor, his team and the state face major challenges but we cannot
cut our way out of this state budget crisis on the backs of families who need the most
support. The announcement of the elimination of $17.8 million in community grants for
respite care, Arc Life Span, (see attached ILS fact sheet). The Autism Program, Best
Buddies, Dental and Epilepsy grants has caused me (and most likely, thousands of others
who are affected) much stress and sleepless nights. These are vital programs for infant,
children and adults with developmental disabilities!
FSN believes that everyone from infants to seniors with disabilities deserve the right to
have the supports needed to reach their full potential and be active, contributing citizens in
their communities! We can’t afford to go backward. For many years families like mine had
NO idea where the table was – and now we have a seat at the table!
As a direct result of Arc’s Life Span funding we provide extensive outreach to both the
African American and Hispanic community. This is critical as many of these families are in
areas with very limited resources. Family support is provided in the following cost-effective
ways: through our website at www.familysupportnetwork.org, newsletters, Facebook page,
annual events, and one on one training, both in person and utilizing current technology.
FSN is recommending the restoration of $17.8 million in community grants for respite care,
Arc Life Span, The Autism Program, Best Buddies, Dental and Epilepsy grants. This dollar
investment in our families will allow individuals like Tamekia to continue to thrive in the
community and not revert back to the way things were thirty-nine years ago. Individualized
advocacy is more than just support for services it is also about sharing information,
education, compassion and collaborating with others who share the same passion, while
we continue to advocate for programs that make a true difference in the life of individuals
who have disabilities.
In closing I appeal to you on behalf of my daughter and the many families we serve
through the Family Support Network restore these grants – because it is the RIGHT thing
to do! Thank you.
Shirley A. Perez
Shirley A. Perez
Executive Director, FSN
Tony Paulauski Executive Director
The Arc of Illinois
20901 S. LaGrange Rd. Suite 209
Frankfort, IL 60423