Democratic Committee Vice Chairman Dan Chiariello represented Sussex County at the newly formed New Jersey State Democratic Committee Caucus for Disabled Citizens.
The Disability Caucus was formed at NJSDC's convention in Atlantic City in May 2015. In a follow up meeting held later that year in September, State Chairman John Currie, along with members of the State Legislature and several County Freeholders, voiced their commitment to this caucus as an important part of the Party’s platform and principles.
The Party now has eleven different caucuses, whose goals are to advocate for the rights of citizens of the State of New Jersey. Each caucus provides an incubator where new laws, regulations, and policies are often first proposed.
On Sunday, April 16th, the Disability Caucus met at the East Rutherford Civic Center in a public forum, for the purpose of setting the public policy agenda for the 2016 and 2017 legislative years. The meeting was led by Dr. Salvatore Pizzuro, an expert in disabilities policy. Dr. Pizzuro opened the forum by explaining that the Democratic Party, and specifically this caucus, are advocates of disabled persons in this state. “Too often, these are people we’d rather not think about,” he explained. He was joined by LD36 Assemblyman Gary Schaer and Assemblywoman Marlene Caride, and LD35 Assemblywoman Shavonda Sumter, to reinforce the message that State should do more to protect the rights of its disabled citizens.
In 2013 under Governor Christie, the State sub-contracted out administrative services of the Division of Children's System of Care, which provides services to disabled children between the ages of three and twenty-one, to a private company called Perform Care. Panel member Cecilia Feely, an autism specialist at Rutgers University, spoke about the shortcomings of this privatization, which led to a noticeable cut in services. “They effectively act as a phone bank for the Division,” noted Feely. “They take your call but never seem to perform any action. Half of all families are not getting any attention. 34% wait a year before even getting a response.”
The program was designed only for short term help, lasting only a year. After one year, applicants must re-apply.
The most important tool that families have in getting assistance for children with disabilities is the Individuals with Disabilities Education Act. IDEA was introduced by New Jersey Senator Harrison Williams (D) in 1975. Dr. Pizzuro explained that at the time there were strong headwinds against the bill, with many people believing that the federal government should play no role in this. After it passed the Congress, President Ford only signed the bill after Congress threatened to override any veto.
Panel member Zoey Shalita, a licensed mental health clinician, spoke to the public in attendance about this federal law. Under it, states are required to provide services and education to children up to the age of twenty-one or twenty-two. However, that age becomes a cliff, after which the child “becomes invisible”. “There are often no programs available to assist families of disabled citizens. It’s as if our guaranteed rights of life, liberty, and the pursuit of happiness don’t apply.” Shalita argued for appropriate job training and day programs, as well as for legal protections that often don’t exist.
Jean Pasternak, a member of Task Force for Improving Special Education for Public School Students, explained that rights that are protected under IEDA are often violated by public school system that do not follow the law. Since the deep cuts in education funding made by Chris Christie a few years ago, schools do not have the means to hire teachers and implement appropriate programs. As a result, too often these programs do not exist, and teachers are not trained properly. You can read more about her findings here.
Dr. Pizzuro cited additional shortcomings of IDEA. “After age twenty-one is when we really fail to meet the needs of our disabled citizens. Many have not received training to become gainfully employed. They do not have opportunities to interact with and make friends with people who are not disabled, and they fail to develop proper communication skills.”
After the panel discussion, the caucus listened to comments from most of the nearly two dozen members of the public who were in attendance. A high level of frustration, hardship, and despair was voiced by everyone eager to share their story. Many were forced to abandon their careers to care for their children. A high level of attention and expense continued into their adult years. Care is costly and emotionally taxing, and many families struggle to meet the needs of their disabled children living with them. All of them worried about what would happen to their child when the time comes that they are no longer there to care for them.
The SCDC will continue to stay involved with the disabilities caucus. If you would like more information about this topic, or have information to share, please contact the SCDC at [email protected].