Families Cannot Be Caregivers Forever

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!