People with disabilities need support of ‘village’
“It takes a village to raise a child.” This quote is even more profound when raising a child with special needs. Our 21-year-old son Mark has Down syndrome. Our “village” has included family, teachers, therapists as well as many agencies that serve the needs of individuals with intellectual and developmental disabilities (IDD). Without the support and hard work of our “village,” Mark would not be the increasingly capable person he is today.
In November 2014, four bills submitted to help people with IDD were unanimously approved by members of the State Senate and Assembly. Gov. Andrew Cuomo vetoed them, placing people with IDD at risk of harm. Without proper supports, people with IDD will have their right to live, learn, work and play within their communities severely compromised. This is a matter of civil rights!
The need for appropriate services and supports does not stop when a person reaches the age of 21. If anything, it increases as individuals pursue a life more independent of family. Due to recent changes in service provision by the state, our son faces days home alone, isolated from peers and our community.
More frightening to my husband and me is the fact that we will not be able to care for Mark forever. Who will Mark’s “village” be after we are gone? This is the thought that keeps us up in the middle of the night. In New York State, there are 12,000 people with IDD on a wait list for housing and other services. The state’s current plan is unjust. It was hastily developed and poorly executed. Please let Cuomo know our loved ones deserve better.
Mary Lou Montanari