Speech given on 12/16/2004 at Ramsey County Citizen's Advisory Council
Legislative Breakfast:
Good Morning!
My name is Tim Anderson. I am co-chair of the Developmental Disabilities
Committee. I have a daughter named Maren.
a.. 8 years old
b.. in third grade at Valentine Hills Elementary School in Arden Hills
c.. has Down syndrome
But before I say any more about my daughter, let me talk a little bit about
some other people I know of who have Down syndrome:
a.. Lee Jones, from Kansas City, Missouri
a.. B.A. in Recreation, with a Minor in Theatre
b.. Certified Fitness Trainer
c.. Fitness attendant at the YMCA
d.. Lives on his own
e.. Drives his own car
f.. Certified scuba diver and plays the piano
b.. Chad McKinley, is 29 and lives in Tucson, Arizona
a.. Works for the Pima County Public works Department
a.. Scans maps and documents into the county website
b.. Lives on his own
c.. Volunteers at the Arizona Division of Developmental Disabilities as a
Consumer Advocate
a.. Training to become a monitor of disabled adults in residential
settings
c.. Karen Gaffney, a young woman from Portland, Oregon
a.. Associate of Science degree and has a teacher's aide certificate
b.. Works in a HeadStart program
c.. She's a gifted public speaker
d.. Hass difficulty walking, but swam two legs of a relay across the
English Channel
Now, I don't want to sugarcoat the struggles that people with developmental
disabilities have to deal with. Some - many - have trouble dealing with just
the day-to-day activities of living. Many struggle with boredom, depression,
loneliness...
But I talk about these three to show that EVERYBODY has gifts, EVERYBODY has
abilities, EVERYBODY has something to offer to society.
So how is it that these people have been able to achieve so much - to be people
of ability rather than people of dis-ability?
Well, I have my own theory - 3 things:
1.. They were born with an innate desire to set and achieve goals
a.. And I believe this is something we are ALL born with
2.. They have parents who were deeply involved with them to nurture and
develop that innate desire
3.. And they had support from the community
a.. Teachers, relatives, employers, social workers, friends - you get the
idea
Now back to my daughter
In the case of my daughter, my wife (particularly my wife) and I are heavily
involved in trying to help Maren develop to her potential.
Maren:
a.. Is in dance class
b.. Takes gymnastics and yoga
c.. Is in the Brownies
d.. Is involved in the church choir (she doesn't sing, but she's there -
she participates)
All this while taking:
a.. 2 hours a week of private speech therapy
b.. 2 hours a week of private occupational therapy
a.. Over and above the services she receives in school
AND all this while constantly trying to play "catch-up" with her peers. You
have to realize
a.. She didn't walk until she was 2
b.. She didn't use the toilet until she was 6-1/2
c.. Everything comes for Maren, but everything comes slower and harder
My wife:
a.. Volunteers in the classroom
b.. Is a Brownie troop leader
c.. Is PTA President
d.. And coordinates and shuttles Maren between all these activities and
appointments
She knows all the kids that Maren interacts with - and most of their parents.
She knows which kids "click" with Maren and which ones don't - and the ones who
do get special attention.
I do things like:
a.. Work with Maren on her therapy goals at home
b.. Brushing and flossing her teeth
c.. Helping her get dressed
d.. And directing her while she does her chores
The impact on Maren of all the therapy and community activities she's
involved in over the last few years has been tremendous:
a.. Where she used to avoid other kids, now she's starting to seek them out
to play and be friends with
b.. She can handle stressful situations better
c.. She does better in school
d.. In short, Maren functions better in society
Waiver funds through the state have helped her achieve these things, but this
doesn't come without a cost to her parents:
a.. On top of the time we spend with Maren and the "regular" expenses that
come with raising a child, we also pay a parental fee to the state to access
services like speech therapy and occupational therapy.
b.. And with budget cuts in the 2003 legislative session, our fees doubled
despite a drop in household income.
This is amazing to me given that only a generation ago, we would remove these
people from society and institutionalize them at greater cost to the state than
we incur today.
Now I hear in Minnesota that we have a spending problem.
And I WOULD say that whenever we use taxpayer dollars, we need to be smart -
and savvy - and even conservative - about how we spend those dollars.
But when you cut spending on kids, you disinvest in them, or should I say,
you divest yourself FROM them. And by doing so, you divest yourself from the
future of the state of Minnesota.
And this is true for all kinds of spending on all kinds of kids - whether
it's for waivers or daycare or ECFE or K-12 education.
In my opinion, the question of taxing vs. spending should not be a one-sided
equation.
I think there's a refusal to increase taxes under the concept of being
conservative. But in my opinion,
When we refuse to increase taxes under changing economic conditions
And when our refusal to increase taxes results not only in a lower quality of
life for people, but also in lower bond ratings on state debt,
Then I think we're engaging in public policy that's actually quite risky, and
you can no longer call it "conservative."
I have a dream for my daughter that when she grows up, she'll feel empowered
to make decisions for herself and have the skills to be able to accomplish her
goals.
Please help us to help help our daughter be the best she can be.
************************************************************
Ren�e Jenson
Como
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