Successful passage and
enactment of the Special Needs Scholarship Act would be just the latest in a
surge of school choice programs for special needs students around the country.
There are currently 10 private school choice programs across the nation for
children with special needs. They operate in eight states—Arizona, Florida,
Georgia, Louisiana, North Carolina, Ohio, Oklahoma, and Utah, with two programs
in both Arizona and Ohio. At the beginning of the 2011-12 school year,
nearly 30,000 students were enrolled in the programs.
In the Senate
hearing on Tuesday, more than 30 parents and children testified in support of
this bill. While the Committee has not
yet voted on the measure, Committee members listened to more than five hours of
testimony.
Just one of the many
parents to testify, Sally Schaeffer, mother of Lydia, spoke at yesterday’s
hearing in support of this important legislation.
Read parts of her testimony below for the inspiring story of why the
Badger State needs the Special Needs Scholarship Act.
Every single solitary day […] I am advocating and fighting
for the rights and needs of my special girl Lydia, who is here. And I do want to apologize for her shaking of
the pill bottle, but unfortunately with her autism spectrum, it is the only
thing that keeps her happy.
So when I fight, I’m fighting everything from insurance
coverage for equipment, insurance coverage for needs of various therapies,
getting doctors to listen to my instinct of what’s going wrong.
I am a parent. I know my child. Not only do I deal with public entities every
single day, but also the people around us.
The people in grocery stores who stare; the people who hear her pill
bottle and stare […]
So not only am I advocating on every front and on every end,
I’m also dealing with the public.
Everyday I’m on the phone, I’m emailing, advocating, and educating for
Lydia.
I’ve had to do it with her public school as well. She is in the early childhood program. I’ve had to email because they put her braces
on wrong. I’ve had to talk to them about
other issues that have gone wrong.
My background on Lydia is that she a rare chromosome
disordered child. When she was diagnosed at five months of age, there were only
50 of her diagnosed in the entire world.
There are now 250.
Her syndrome leaves her mildly to severely […] impaired both
mentally and physically. And at this
point it time, she operates at a 10- to 12-month level. She is nonverbal. […] She wears diapers. She can’t walk. She needs
to be fed. She needs to be dressed.
I have become knowledgeable and an expert on all things
Lydia. Whatever materials, white papers,
blogs, internet sites, physicians, I read and I absorb. I know the specialists in the field. And I’ve
even considered flying her out of state, into the east coast to see some of the
top specialists in the world for her [disability].
I know the doctors. I know the hospitals. I know the wonder
drugs. I know the treatments. And I know these schools. I know the tests that need to be done, the
diseases that accompany her syndrome, and I hold my breath every single time
while my daughter awaits those results.
I have a college education.
But without a medical degree, I have become board certified in
neurology, gastroenterology, psychiatry, immunology, endocrinology, and
probably every other specialist that she sees as well.
Why am I giving you this background? So you know who we are.
We are one family in the sea of families in Wisconsin.
However moms like me, we are out there.
I speak on behalf of all of them.
Some of my friends are the fiercest special needs moms that I know.
Many of them are not able to be here because they cannot make
it here. They have to take care of their
children 24/7. They can’t work as the
mother described because they have to be home with their children. This is not my first trip to Madison and I
don’t see it as my last.
We are moms that will fight and never tire. We are our children’s voice. And we
understand and accept responsibility that’s put on us.
Two years ago, I started the school environment for Lydia when
she was just two years old. I was elated
when I found a school that I thought would fit Lydia’s needs. A school dedicated to special needs Lakeland
in Elkhorn, Wisconsin.
This school is just 25 minutes from my home. My husband and I toured the school and found
ourselves stopping within the beginning steps of the tour to find ourselves in
tears—in tears about how we felt Lydia would enjoy it, how she would fit in,
and most of all, how she [would] progress in this type of environment.
When I called DPI to enquire about this school, the woman on
the phone said to me, “Oh, you want to go to that segregated school?”
I said, “Really, that’s the term you use? As a parent of a
special needs [child], I would please advise you to not use that term in the
future for this school. This is not a
segregated school”
Excited about this opportunity, I called our
school district to hear about open enrollment and how I could get the process
going.
[…]
Eventually what I learned was that the most
likely way to get her in school, would be to sell my home, thus losing money in
this current economy, uproot our business, move my other children to the other
district that Lakeland is in.
Through the special needs scholarship of
Wisconsin, I’ve learned the sad truth that Senators spoke about [earlier], that
44 percent are denied by the resident and nonresident school district. Special needs—44 percent. We need to say that number again and
again. Even more disappointing as I
looked at the Burlington School District and of the 19 that were asked for open
enrollment for special needs, 100 percent of those were denied. 100 percent.
It solidifies that Lydia’s district won’t
assist in my request for open enrollment and my moving may be my only option
for Lydia to attend Lakeland in Elkhorn.
So I ask you, why is it that one of the most
important entities in a child’s life also becomes a battle along with
everything else we have on our plates.
Why must I uproot my family and our life to make sure my daughter gets
the education that I—her mother who knows her best—should get?
I didn’t take off work today to hear myself
talk or to lecture and have you hear me talk.
I came here to tell you that education is something that parents
shouldn’t have to fight for. Knowing
what the best venue for our kids to learn shouldn’t be more a mind-numbing and
emotion-sucking task for us to take on along with everything else.
Educating our children in this area we feel
is best because we know best. Having to
move our families hurt us financially even more than we already are and taking
care of our kids and emotional shouldn’t have to be one more thing we have for
our kids.
But because we’re willing; because we’re
fighters, I’ve been looking for a house for over a year. But I shouldn’t have to.
[…]
Do you not trust us as parents or the schools
we are asking our children to go to?
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