Friday, November 21, 2008

Geraldo takes on the Waiting List

I recently read that today's children with Down syndrome will be the first generation to outlive their parents. It's wonderful that medical advancements have allowed them a longer and more enjoyable life. At the same time, it creates a new set of problems for parents who now need to plan for their child's future after the parents have passed away. It is one of those embers that always seems to burn somewhere in my brain...what will happen to Caden when I am gone? Hopefully I will have raised him to be self-sufficient and as independent as possible. But what if he needs some assistance? In most states, almost as soon as the child leaves high school and transitions into adult services, they will be added to the ever-growing list of people with disabilities who are in need. And they will wait for those services. Sometimes the family members can pick up the slack and offer housing and such until the state funds become available but many others are in extremely urgent situations. And still they wait. In Pennsylvania, that waiting list is over 20,000 people long. It terrifies me, that Waiting List. I don't ever want Caden to be on it but there just isn't enough money to go around. If he needs services from the Mental Retardation program, he will most certainly become a number on the list.

So I was pleased to read this from Peter Bern, the Executive Director of the ARC:

"Visibly moved by comments from self-advocates, family members and
chapter leaders at the Opening Plenary Session of The Arc's 2008
National Convention, renowned television journalist, Geraldo Rivera,
electrified the audience, pledging that on January 6, 2009 - the anniversary
of his expose about Willowbrook - he will present a one-hour news
special to shine light on the current crisis facing people with disabilities and their families - the Waiting List.
This news expose will only be possible if chapters of The Arc, self-advocates and family members come forward IMMEDIATELY with VIDEO and STORIES
that dramatically illustrate the challenge people with intellectual disabilities face today in accessing the service they need to live freely in the community.
The Arc of the United States will be working with Geraldo and his staff to gather the
background information, stories, video and other media to make this show a
success..... but time is very short.
Have good video to share? Send it in today.
Have a compelling story to tell? Then get to work today.
Write it down or, better yet, take out your video camera and film away!
Geraldo needs stories about the crisis people with disabilities and their families are facing at all stages of the life span.
Send your video or stories to
For assistance contact Laura Hart, Director of Communications at
or Stacy Monoghan, Online Advocacy Manager, at
Let's make this the beginning of the end of the Waiting List."

In 1972, Geraldo jumpstarted his career, winning an Emmy in the process, with a story about the neglect and abuse of patients with mental disabilities at New York's Willowbrook Hospital. This report led to a class action lawsuit against the state institution. It was settled 3 years later but by then, NY had decided it was time to start moving its patients into community programs. The publicity generated by the case encouraged the passage of a new federal law called the Civil Rights of Institutionalized Persons Act of 1980. This law allows the Attorney General to seek
relief for patients confined in public institutions where conditions exist that deprive them of their constitutional rights. In 1983, NY announced it was closing Willowbrook.

I can't wait for Geraldo to take on the Waiting List! Tune in on January 6.

1 comment:

My name is Sarah said...

This is Joyce. Thank you for making me aware of this. Sarah is number 2002 on the waiting list in our county. They move about 40 a year into a program. It is frightening, so my husband and I have started planning on our own. We really cannot count on services being there. It will be interesting to see what they do with this story.