The Neighborhood Network of New York (NNNY) is set to develop an innovative, community based service network for adults with autism, thanks to a grant from the New York State Office for People with Developmental Disabilities (OPWDD). The program will provide individualized services to clients, including remote support technology and community activities.

NNNY will launch a prototype of the program to serve Medicaid beneficiaries in Westchester County. In time, the organization will develop protocols to launch similar networks throughout the state.

The NNNY program is intended to provide greater independence and empowerment for adults with autism through supports within the community, including remote support in private apartments. The program will be more affordable than traditional models, while also providing services which are appropriate to the individual’s needs and more fully integrated into the larger community.

With a record 1 in 68 children diagnosed with Autism Spectrum Disorder, as of 2010, services like these will be essential in serving an unprecedented number of children with autism reaching adulthood. This transition often represents a challenge for people with autism and their families, as they leave the support of parents and the school system and struggle to identify appropriate supports within the adult service system. Traditional full service options, like group homes and day services, are expensive, and for many individuals with autism who do not need such a high level of staffing, unnecessarily restrictive. These traditional, segregated models may represent a stark contrast to the integration into the school community that the individual with autism previously experienced in school, where they were mandated by law to be educated in the Least Restrictive Environment, together with students without disabilities to the maximum extent appropriate.

The NNNY program will take a three-pronged approach. Individualized Living Services for All Levels of Need allows clients to live alone or with a roommate in apartment complexes where both clients and non-clients reside. Clients who need more support may live with a professional family. All NNNY homes will include Proprietary Remote Support Technology that can be used to monitor residents’ safety and provide real-time coaching. Finally, the Communiversity will provide lifelong learning, teaching job skills and life skills along with community and recreational activities.

Learn more about our services by visiting www.specialneedsnewyork.com.

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Our guest blogger this week is Liane Kupferberg Carter, Writer, Journalist, and Autism Advocate.

(Originally published by The Chicago Tribune)

Maybe it’s just this time of year making me pensive. Summer is ending. Kids are leaving for college. Social media are crammed with articles and advice on how to weather the seismic family shift: “Get Your Heart and Mind Ready.” “Loosen the Times That Bind.” “How to Navigate What Comes Next.”

My autistic son, Mickey, has finished high school. In our state, a developmentally disabled child “exits” the school system at 21. They call it “exiting” — not “graduating.” He has “transitioned” — to a Byzantine, chronically underfunded system of government services for disabled adults. Mickey hasn’t graduated, exactly. Neither have I.

This point was recently driven home when a woman in our neighborhood emailed us an invitation to a barbecue for a club she was starting for “empty nesters.” I get it. When our older son, Jonathan, left for college, it felt like a rift in the family fabric. Mickey, then 14, summed it up when he asked, “My brother doesn’t live here anymore? Are we divorced?”

My husband, Marc, and I inhabit a peculiar no man’s land. Our children are grown, but we are not empty nesters. The realization that we will in all likelihood never be empty nesters is a sadness all its own.

For the past two years I’ve been a member of an invitation-only Facebook group of middle-aged female writers. My fellow midlifers are prolific bloggers. They lament their empty nests, but mostly they write with excitement and joy about rediscovering themselves. They celebrate their newfound freedom to travel, return to the workplace, new hobbies or new passions. Initially the group was called Generation Fabulous: The Women of Midlife.
I don’t feel fabulous.

Maybe it was the woman who last week posted a picture of herself poolside in Hawaii. It wasn’t a self-portrait. It was a photo of her manicured toes. Next to a glass of red wine. Beside a bowl of chocolate-covered cherries. Yes, she styled that self-satisfied photo herself. Yes, I’ve read the study that says Facebook makes people discontented because everyone else seems to live a perfect life. And, yes, I know that people curate what they post. They share their highlight reels. Those chocolate-covered cherries did me in anyway.

I’m embarrassed to admit how much I envy these women. I’m not scaling Machu Picchu, sailing the Galapagos or climbing Kilimanjaro. I’m not “finding” myself. I’m right here. Where I have always been.

I can stand far enough back to hear how whiny I sound. Which makes me feel ashamed. Especially when I know how much ease and comfort I still manage to enjoy. My marriage is strong. Jonathan is thriving. I get paid to blog. I’ve just finished writing a memoir. To complain about something I imagine I’m missing in my life is, as Jonathan would put it, a “first-world problem.”

This past spring I got an invitation from the high school to a workshop on “helping your child survive freshman year at college away from the safe nest of home.” I realized how little I have in common anymore with most of the parents in our community. I miss the easy connections I made with other mothers when all of us were knee-deep in raising children. In the months since Mickey “exited,” I’ve come to realize how much of our social life was based on shared school activities or milestones. Sports. Religious school. Sleep-away camp. Most of those situational friendships have drifted away. Maybe they were never true friendships, but I still miss them. Occasionally empty-nest friends call us last minute for dinner and a movie. They forget that for us, any activity first and foremost involves finding a sitter for our 21-year-old son.

Parents like me buck the baby boomer’s empty-nest trend. What will our “reinvention,” our second acts, look like? According to a 2013 study in the journal Autism, young adults with a diagnosis of Autism Spectrum Disorder are more likely to live with their parents compared with those with other types of disabilities. They are the group least likely to live independently after high school. Lisa Goring, vice president of family services at Autism Speaks, confirms this, telling me, “Approximately 80 percent of adults with autism up to 30 years old live at home.”

Mickey isn’t ready to live somewhere else. Neither are we. Will we ever be? At some point I know that moving out will be in his best interest. I’ve heard too many horror stories about disabled adults who live with aging parents until a health crisis — often the death of the last parent — catapults the grieving, grown child into the state system. A state that must then scramble to place him anywhere it can find, whether the fit is good or not.

Marc and I know we will need to make hard choices. Just not yet. Mickey is going to live with us for a long, long time, until the day we can’t do this any longer. Then we will have to find a safe group home for him. A thought so painful I cannot breathe.

My friend Elaine calls. She has a developmentally disabled son too. We met in a speech therapist’s office nearly 20 years ago. We speak a special shorthand. I tell her I’ve been feeling blue. I confess my mean and ugly thoughts. “I get it,” she says, over and over. It feels like lancing a boil. Painful relief to let out the poison.

“No one who hasn’t lived this really knows what it’s like,” she says.
“That’s true about everything,” I say. “When you had cancer, I was sympathetic and scared for you. But did I really, truly know how you felt? Of course not.”

Of course not.

You can’t completely understand what you haven’t experienced firsthand. That, I suddenly realize, is the point. Everyone has something. A parent with dementia. A child with mental health problems. A sick spouse. In the end, grief finds us all.

“If you put everyone’s worries in a pile in the middle of the room and said, ‘Choose,’ each of us would probably take back our own bundle,” Elaine points out.

“True,” I concede. “Who was it who said, ‘Comparison is the thief of joy?’”
Probably someone with a special needs child.

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By: Giulia Frasca, Esq., Littman Krooks LLP

There are an estimated two million people with Autism Spectrum Disorders in the United States.  Over 500,000 of those diagnosed are children.  The incidence rate of Autism increased to one in 68 children.  There is a five-to-one prevalence of Autism in boys over girls so that the incidence rate of Autism for boys is one in every 54 boys.  E ach child diagnosed with Autism and each case of Autism is unique such that there is not one particular treatment, program, or methodology that will work for all children diagnosed with Autism.  Recently, an article published in the New York Times titled “Reaching My Autistic Son Through Disney” by Ron Suskind discussed how watching Disney movies and relating to the characters in those movies helped one child diagnosed with Autism break through and communicate verbally, in writing and through art with other members of his family.

Today, school districts use several different, innovative methodologies for teaching children with Autism.  Most schools teach children with Autism using Applied Behavioral Analysis (ABA), which has been proven to work for children with the most severe cases of Autism.  ABA focuses on changing the environment around the child in order to help the child achieve a task rather than simply telling the child what to do.  ABA aims to build a direct relationship between desirable outcomes and the environment the child is in.

Another methodology called Naturalistic Teaching Strategies involves creating an environment in which children are motivated to communicate a specific need or want by, for example, placing a favorite toy on a shelf, out of reach so that the child will be motivated to ask for it.  Children with more advanced language skills will be prompted to ask a question or speak a full sentence.

Yet another, newer methodology, Social Communication, Emotional Regulation and Transactional Support (SCERTS) combines several different treatments and identifies and builds on a student’s strengths, then creates strategies to improve the student’s weaknesses.

Autism Spectrum Disorder teaching methodologies are constantly evolving in order to address the broad spectrum of needs and the different ways in which children develop.  Littman Krooks LLP’s special education attorneys strive to keep abreast of new developments in these areas in order to be the strongest advocates for families with children with Autism Spectrum Disorders.

The seventh annual World Autism Awareness Day is Tuesday, April 2, 2014. Learn more about events in your area by visiting the Autism Speaks website or visit our blog at: http://www.littmankrooks.com/blog/ Was this article of interest to you? If so, please LIKE our Facebook Page by clicking here.