An Essay by Marcy VanZandt
It has been 7 years since my daughter Casey, then 25 years
old, left our family home in Castile, NY for a place of her own 25 miles away
in Dansville. In some ways, it was a typical transition for a woman in her mid
20s. But it was also somewhat extraordinary, a point that I hope is not lost on
Gov. Cuomo as he puts the final touches on his 2015 budget proposal for the
State of New York.
You see, like one in roughly 50 Americans, Casey was born with
a developmental disability, which in Casey's case affects her cognitive and
language skills. My husband, Ed, and I had already watched two sons go off to
college, so the tears and proud feelings associated with children “leaving the
nest” were familiar. But Casey had overcome so many extra hurdles on this journey
to residential independence.
I remember Casey's first night in her new house, a group home
operated by The Arc of Livingston-Wyoming, as if it were just yesterday. She had spent nights away from home before,
but this time was different. As parents,
it was very lonely, with lots of tears. Did she think we abandoned her? What
was going through her head?
Today, that nervousness has been eclipsed by an overwhelming
feeling of pride. For the first time in her life, Casey is able to experience
all of the thrills, nervousness, and responsibility that accompany independent
living.
I also feel an incredible sense of relief knowing that Casey
is well cared for by dedicated direct support professionals at the house, and
at The Arc's day programs where she works and practices life skills. It is important never to forget that Ed and I
are in our retirement years, and the reality of life is that someday we won't
be here for Casey.
Put simply, families cannot be caregivers forever.
Which brings me to Gov. Cuomo, and a call to action for
readers of this letter.
I urge you to contact Gov. Cuomo, as well as our State
Senators and Assemblymembers. The
governor's budget proposal is expected later this month, and recent actions by
his office have shown a disturbing disregard toward people with disabilities
who are living at home with aging family members.
On November 21, the governor vetoed four very important bills
for people with developmental disabilities. In particular, these bills would
have begun to address the growing waiting list of people living at home in
critical need of service, many of whom have parents that are too disabled by
age to care for them any longer.
The response among families has been dramatic and
poignant. During highly emotional
testimony at hearings held across the State, these families told of how the
lack of any alternatives is pushing many to the brink. One family member said
her only solace lay in thoughts of suicide.
We cannot let the governor's vetoes represent a beginning for
policy as it pertains to aging families of children with disabilities
throughout New York State.
Instead, especially with a record budget surplus of over $6.8
billion, the State must make a real and concerted effort to finally do
something to address this problem.
Families, advocates, and people with
developmental disabilities around the State need to implore
the governor and our State legislators to include funds in the upcoming State
budget to provide critical services.
Locally, The Arc has set up a section of its Web site with
contact information for Gov. Cuomo and other representatives. Visit
www.lwarc.org to join the effort. There are also details on the site about our
next in-person Family Advocacy Group meeting, January 26 in Mount Morris.
Let's join together and let Albany know that we care about our
daughters, sons, friends, and neighbors with disabilities, not just today, but
as we grow older together. There's
something extraordinary that happens in houses like the one where Casey lives. Please join Casey and me as we tell the State
about it. Together, our voices won't be denied!
by a parent or other adult guardian. Families are
encouraged to donate a non-perishable food item to benefit local families in
need through KidStart's backpack program.
