APRIL NATIONAL AUTISM AWARENESS MONTH: Another Journey to Awareness: Autism, Aging Out, Rutgers and Hope Autism Solutions. bY Calvin Schwartz April 18th 2016
I call this article another journey to awareness. These journeys began innocently enough four years ago as I slowly evolved into journalism; a long story. A capsule view. I’ve lived in comfortable, staid Monmouth County for nearly a quarter century surrounded by sprawling homes and upbeat ethnic eateries. One day, after Hurricane Sandy, I met Sherry Rubel, a homeless activist. Two weeks later, with Tara-Jean Vitale, my co-host at NJ Discover Live, Sherry took us into Tent City, Lakewood, New Jersey, where up to 112 people lived in tents without heat, power, running water for up to 12 years. Ocean County had no provisions for the homeless. I wound up spending days there, learning, feeling, emoting and wondering how 112 people lived like this, 22 miles from my house on the east coast of America. My consciousness was forever raised and hardened. I helped promote the work of documentarian Jack Ballo, whose film ‘Destiny’s Bridge’ starkly tells the story of Tent City.
There was a logical segue to homelessness; hunger in America. I soon learned that in 1980, there were 40 food pantries in America. Today there are 40,000. I wondered how this can be in America. I spent several learning days at the Food Bank of Monmouth and Ocean Counties. My consciousness was raised and hardened again. I would never be the same after these journeys. It is overwhelming for me to comprehend then to write about it. But I always will. There is an old spiritual saying, “He who saves a life, saves the world.”
Segue. I try to be an absorbent sponge with current events; my mother impressed it upon me. From a distance, I’ve seen stories about autism; the debate about early childhood vaccinations as a causative to the explosion of incidence. That was the extent of my awareness. I have a friend, Lew Preschel and his close friend Ira, who watch/follow my NJ Discover Live radio/cable TV Show. Our show mantra is to elevate the people and places of New Jersey; to discover, as our name suggests, so we look for unique guests/stories that the major networks can’t devote the needed time. Another long story.
For a future show, Lew suggested following a red brick information road that would take me to Florida and then to Rutgers University where I’d begin my next journey. I set up an appointment with Mary Chrow, Development Specialist at Rutgers Graduate School of Applied and Professional Psychology who has been working on a pioneering project with Autism. Time was budgeted for an hour. Two and half hours later, we finished talking and my new journey was under way.
Like an old Pete Seeger and Tom Paxton folk song; “What did I learn in school today?” Mary outlined some of the basic facts. An estimated one in 68 children nationally and one in 45 in New Jersey are diagnosed with autism spectrum disorder(ASD) which is a developmental disability that can cause significant communication, behavior and social roadblocks. Through high school, children with autism get the services and resources for their special needs. What shocked me was this next aspect. Once they leave and age out of the public school system, services are dramatically reduced, leaving these young adults with little support outside of the family structure. How could this be? Then I thought about homelessness and hunger and how could that be?
Before meeting with Mary, I did my journalistic due diligence. I read about Mel Karmazin and Rutgers. Now mix in (gently stirred) a little synchronicity; one of my favorite indulgences. Karmazin is one of my media heroes; a founder of Infinity Broadcasting and CEO of CBS and Sirius. I watched a recent TV interview heralding Karmazin’s involvement with autism. He started off by saying, “There is a tsunami coming with all of these children (up to 500,000) becoming adults and what services and arrangements have been made to take care of them?” His words reverberate awareness. He is partnering with Rutgers University to raise funds for the Rutgers Center for Adult Autism Services; that pioneering project. Karmazin realized that a major university as an epicenter makes perfect sense; they have all the support systems in place and offer so many job opportunities for these young ASD adults. Karmazin met with Rutgers President Barchi.
Mary went on to explain what the center (approximately three years away) will focus on. There are two core on-campus programs. One is a workday program that gives 50 to 60 adults training (pre), vocational and recreational opportunities. The second is a pilot residential program which provides residences and services for 20 ASD adults who will live with 20 Rutgers graduate students and of course work on campus. I was exuberant; my alma mater was at the forefront of a revolutionary program that could be a model for the whole country. “Can we do some NJ Discover LIVE TV shows and help to create awareness to enlist broad based support? It’s about making people aware of those 500,000 young adults who need.”
It’s always the case of people not grasping the depth and breadth of need. People need to know. I didn’t know about autism and aging out. I’m a just regular middle American, Jersey guy. I like my college football, tuna subs and an occasional visit to MOMA in New York City. My reasoning, deductive, if I didn’t know the present state of adults and autism, then so many others wouldn’t know.
There’s a process before undertaking a TV show together. Mary suggested my learning about Hope Autism Solutions and meeting with Danielle Lumby, a Rutgers graduate who is at that epicenter of local family involvement. Danielle and I went through the discovery process on the phone; more extant synchronicity; we’re both from Maplewood. My first novel, ‘Vichy Water,’ has a picture of the Maplewood train station on the cover; she laughed. We knew great chemistry going forward.
While I was driving up to meet with Danielle and the team from Our House Inc.; a dynamic, well respected service provider, that journalistic epiphany consumed me. I knew my mission; I was in a phone booth; the old fashioned kind that Superman was partial to. If you’re reading this now, so much help is needed; awareness is needed. Get off the sedentary sofa and help, support and get involved. It’s good for the soul. My mission here is to raise awareness and promote involvement in the cause of autism.
Media needs to get involved to bring these young adults and their families into recognized awareness. There is power in knowledge. Knowledge is good. Later that afternoon, Danielle, would tell our group around a conference table that when the Rutgers Today story came out about (http://news.rutgers.edu/feature/caring-those-autism-they-grow-older/20151201#.Vv7HSuIrKUk ) Danielle and husband Jeff and their work with autism, she was contacted often. A woman in Missouri called her about the work of Hope Autism Solutions. “One article possibly started a similar program in Missouri. I think that woman will actually do it.” I thought to myself as I got off Route 287, there is so much power with the media to teach, inspire and move people off a sofa or to reach into their pockets to help financially. Life is short.
The facility in Basking Ridge for Hope Autism Solutions was bright, upbeat and replete with particulates of energy of caring and devotion. In 2010, a small group of families in Basking Ridge, New Jersey became aware of the critical need for meaningful programs that gives adults with autism the opportunity to lead productive lives after they aged out. Hope Autism Foundation was born. In early 2012, the program model, Hope Autism Solutions (HAS) was created and approved by the NJ Division of Developmental Disabilities. Our House Inc. currently operates two HAS sites in Somerset and Union County caring for 42 adults with autism. In January, a third location was opened.
One of mankind’s greatest innovations is the conference table. That’s where I sat down with Danielle Lumby, President, Founding Trustee, Michele DelCorsano, President & CEO of Our House, Danielle Langford, Director and Katie Brown from Our House.
We started talking about the cost factors of the center. Danielle began, “The foundation helps to offer more programs. But that is a manageable number. The real cost is construction, furnishing and technology. Those are the big dollars…. A yoga program, nutritional is easy to raise money for.” Michele added, “Because we make every space handicap accessible…. barrier free.”
I heard that perhaps no other service provider is expanding programs like this. I was listening intently and feeling a special amalgam of emotion around the table; the palpable stuff. I asked, “How did the impetus evolve to embark on this path?” Danielle added, “My son (21) can’t be left alone. So what do parents do (a single parent). The whole family structure is effected…. What does a parent now do? …. Not many opportunities provided…. Here at least we offer transportation, pick-up at house…. The message here is it helps the whole family…. My school system called me in, “We can’t find anything for your kid that’s close in the Basking Ridge area which means my son would be home or without the right staff ratios…. One parent was told we can’t service them because they don’t have the right staffing…. They live in Warren area which meant travelling to Monmouth County every day.” I said, “that’s three plus hours of driving a day.”
For me, I thought it was incredible with Hope Autism Solutions that someone comes to the door and gets their child and the drive is no more than 15 minutes and they get to do meaningful things and the child (young adult) is brought back to their door. On a facility tour later, they told of some of the activities; computer, yoga, cooking, nutrition, soccer, art, etc. “When we were setting this up, kids need to come back home happy and tired and wanting to come back here.”
Parents were telling them that their kids want to come back here. It is a life altering/saving thing; from having nothing to something five days a week. “It’s HUGE!” A lot of what they do is volunteer. Autism Speaks gave a small grant to help pay for a nutritionist. They are a great resource once a child is diagnosed. But Our House, the service provider here makes such a difference.
I could keep writing but I think the point is made how much these devoted people at Rutgers and Hope Autism Solutions and Our House are doing. There is a tsunami coming as Mel Karmazin said; 500,000 children with autism entering young adulthood with nowhere to go. We live in a brave new world where groups of concerned people can make such a difference in quality of life. There is so much to do. I hope these words can move a few people or light a few fires. Yes, I’ll be heading back with a film crew; this is my beginning. Earlier I mentioned Pete Seeger. Perhaps a perfect way to close this chapter in my journey is to partially quote Pete again. At the appropriate place, think autism. He said this at a 1963 Carnegie Hall concert before singing the Civil Rights song, “We Shall Overcome.”
“If you would like to get out of a pessimistic mood yourself, I’ve got one sure remedy for you: Go help those people…. There’s all kinds of jobs that need to be done. Takes hands and hearts and heads to do it. Human beings to do it. And then we’ll see this song come true.”
IMPORTANT LINKS TO CLICK AND ABSORB:
Rutgers Center for Adult Autism Services. To learn more contact Mary Chrow, Director of Development at Rutgers University Foundation firstname.lastname@example.org
Rutgers Center for Adult Autism Services: http://www.rcaas.rutgers.edu/