Deirdre Perkins

SyracuseNY

Thank you so much for holding this hearing. For years autism parents have had only each other and a handful of groups that addressed our needs. When a group as powerful as the New York State Legislature says “how can we help?” I along with many others had to respond.

My name is Dee Perkins and I am seasoned autism veteran. I am a member of NYSABA, FEAT and the president of the Liverpool Special Ed PTO. I have trained with Dr. Vincent Carbone who was worked with thousands of children with autism in Westchester. I have brought my husband to see the funniest behavior analyst in the world, Dr. Bobby Newman who works in Manhattan but has traveled to Ireland and South America to help autistic children and their parents. I have searched for medical interventions in Boston, Baltimore and the city where I came from today, Syracuse. I am a member of the Board of Education of Liverpool, an assistant program director for Challenger Baseball and a coach for the only sport I’m good at Special Olympics bowling. I run a website called syracuseautism.com and I post news that I think my parents might miss. But the role I’m most proud of is I’m a mom to Taylor Perkins, who is 11 years old and is autistic. In the world of autism, I’m one of the old timers.

I’m so proud to be a part of the group of parents who are well educated, active and fierce. They reach out to one another on the internet and in the real world. They share theories, success stories and failures. They share the agony of trying to get help for their children and they delight in each others triumphs. Every emailed story I get fills me with hope and lights the passion in me to keep trying and keep working towards getting help for our children.

So State Assembly of New York, I stand before you today mostly as a mother and a board of ed member but not an expert. My expertise is in my son’s story and his story may be different from all the other stories you’ll hear today. That’s the tough part about autism. Most cases on the surface look similar but when you get down to it, all of our kids are different.

Before I get to my Top 10 list, I want to give you a quick explanation of ABA. ABA stands for Applied Behavior Analysis and it is not something new, but is based on the writings of B F Skinner. Skinner said, “behavior is affected by its consequences. We reward and punish people so that they will behave in different ways.” Everyone here is familiar with the rat, the buzzer and the food. The rat learned early on if he pushed the button he would get his food. This same science teaches our children to speak, to behave correctly and to stop behavior that causes injuries to themselves and others. It has been a godsend to me and to so many other families. It has taught my son to talk, to have conversations and to behave like a typical 6th grader. My son is still autistic.. but now he functions like a typical student.

My top 10 list is a jumping off point. You have the power to keep this conversation going between this committee and the parents and professionals gathered here today. But please do not forget… parents of children with autism need your help. They spend most of their time worrying about their child’s future and never getting enough sleep. They are frantic and terrified about what will happen to their children if something happened to them. I know today can be the first step on the road to helping these parents.

Here are some things to start thinking about:

  1. California is the gold standard when it comes to keeping track of autism cases. Their Department of Developmental Services releases a quarterly report that is a statewide summary of information on autism. The source of this report is the client developmental evaluation report which collects data on persons who receive services. New York should look at California’s model andthen put together New York’s report on autism. This report will keep track of how many children are entering the system and where these children live. It would concentrate our resources in areas that need it the most.

- California’s CDER

  1. Every child with autism should receive a one to one assistant when he/ she enters grade school. Children with autism have attention deficits, social deficits, behavior issues and huge learning disabilities. When they enter the school system they are incapable of learning new things. They spend most of their time navigating their new environment. Make this transition an easy one by giving them an assistant to get through that first year. This should be a funded mandate. Districts shouldn’t have to worry about where the moneycomes from.
  1. Every teaching assistant should be trained in applied behavior analysis. Intensive daily repetitive instruction and rewards based on performance, is the way our children learn. We have to find the balance of intensive one to one training with a mix of inclusion. Early on these children will not learn from inclusion. They do not pick up things by watching other children. They learn by repetition and by discovering their learning styles whether it be visual or auditory.
  1. All Special Ed teachers should have training in ABA. They should put performance based reward systems in place for all children in Special Ed.
  1. New York should be working with its greatest centers of learning to find out more about autism and ways to help parents. Reach out to SUNY Binghamton, SyracuseUniversity and the University of Rochester and bring professionals in to start producing a “Best Practices in Special Ed” document. Some of our schools, teachers and administrators need to be educated about ABA and the success that it has had around the world. These success stories should come from education professionals so it is not thought of as the latest “flavor of the month” teaching strategy. We need buy in from everyone from the superintendents to the lunch room attendants to the parents.
  1. Start thinking about what happens to our children when they graduate. Put tax credits in place for businesses that hire special ed students. Create an award for businesses that comes up with creative ways to transport and support our children in the work environment. Walgreens has set up a distribution center in South Carolina that will take advantage of the disabled population there. That happened with the help of a Senior Vice President who has a son with autism.
  1. Pave the way for campuses where our children can live when they become adults. Take the struggle away from parents who are desperate to figure out what comes next when our children graduate. The Lower Delaware Autism Foundation is still working on raising funds to put together an autism campus where adults with autism could live with varying levels of support.
  1. Make the Medicaid process more streamlined. The average person can not get through that process without help. Why is that?
  1. Find ways to give parents respite. In Syracuse we have Casey’s Place. Parents who are on Medicaid waiver can take a weekend off from parenting and know that their children will be well cared for. We need more Casey’s Places all over this state.
  1. Have this hearing once a year. We can’t possibly discuss everything about autism in one day!

Again, thank you so much for listening. The parents of special needs children in Central New York would love to be here. I received emails all day yesterday asking me to represent Syracuse and Central New York’s parents and autistic children. These parents have jobs, hectic lives and babysitters are few and far between for our children. I am honored to be standing here in their place.

I hope you will take everything you have heard today and start working on a plan. You have my commitment to help in any way I can! Now let’s get some work done!