August 2015
LifeLong Learner
Graduation at Anderson Center for Autism is like no other! We have all attended high school graduations for family and friends. The celebration invokes a sense of accomplishment, pride and marks a milestone in the lives of the graduates. It is a moment in time when the possibilities seem infinite and youthful enthusiasm permeates the air. Much of what we feel at any other graduation is felt at Anderson. Our parents, families and friends are bursting with pride, snapping pictures through tearful eyes and our graduates beam with excitement that is palpable.
our graduates who, let’s face it, have a tougher time in life. This is their “Olympic” moment.
year, the overwhelming agreement that Anderson’s graduations are simply the best.
•Thoughtful consideration of the keynote speakers. We think about the graduates and their families. What message will they want to hear and who can deliver it best? This year we had two former graduates who live in one of our community homes. They were fantastic! This was as important a day to them as their own graduation day and you could feel their pride.
Then, just like that, the photos stop, the decorations come down and the caps and gowns are tucked away until next year when a new batch of students embark on their big day.
•The sense of community expressed in our graduations. Staff will sit, stand, watch the live feed in another room, just to experience this day with “our kids”.
So, what makes an Anderson graduation like no other?
•The spontaneous reactions by graduates who speak, sing, dance and express their feelings without worry or care. Some are too overwhelmed and have to step away, but for the most part, we witness pure joy in a way many of us are too inhibited to express.
•The labor of love from every corner of the agency to make this the best possible day for
•From political figures to news reporters to local community members who attend every
Written by Tina Payeur, Assistant to the Executive Director & Graduation Committee Chair since 2002
Where did all the entitlements go?
By: Neil J. Pollack, CEO
Recently I was on a panel addressing the closure of a $120 million anchor agency called FEGS in NYC. In the session I stated my view that we must evolve with leadership models utilizing sound business practices. One speaker discussed what I call a social work style model of leadership and received an enthusiastic response from the audience. The speaker captured a time in the field I thoroughly loved. However I thought to myself that any serious executive today must change their leadership strategy to survive. I may not agree with the direction our field is headed such as rate rationalization and unfunded mandates, however Anderson thrives by making hard decisions and doing what we must to assure that the 500 people we support have an optimal quality of life. Beyond assuring that Anderson Center for Autism is an exemplary organization offering superior services, a critical element of our future success is advocacy. Leaders like me and families must face the fact that the funding landscape is changing. The services we have grown accustomed to in the world of special needs are being turned upside down. The idealism and enthusiasm of the past might be recaptured if we make our collective voices heard before the community organization is a thing of the past. Where can we make a difference? In the halls of Congress, in Albany, educating decision makers and more. Anderson families are encouraged to become involved by joining Anderson Family Partners (AFP). This is a grassroots family group committed to advocacy and fundraising while encouraging family interaction. At the executive level, there is much to be accomplished. The National Association of Residential Providers for Adults with Autism (NARPAA) addresses policy and policy makers, I chair the committee. Additionally there are a number of Trade Associations such as the Coalition of 853 Schools and the NYS Association of Rehabilitation Agencies [NYSRA] where I serve on the boards. Both have made a difference in funding and regulation. How does this help? AFP In June, AFP families and staff spent two days in DC educating members of both parties about the needs of people with autism. They spoke of their concerns for inclusion throughout society and meaningful lifelong services. Families know that autism is not curable and without constant learning, skills are known to diminish. Legislators asked two important questions: What is the reality of independence for our children with very complex needs? What choices can we offer for optimal quality of life? AFP stated the need for high caliber services that require adequate funding. NARPAA A team of nationwide executives representing NARPAA met with a senior policy group at the Center for Medicaid/Medicare Services (CMS). We were happy to hear the rationale behind the CMS vision of individuality and inclusion. After all, that is what we talk about at Anderson, quality of life and inclusion. We shared the reality of why many people with autism require 24 hour supports, especially in the community. We left feeling like they had really listened to us, and most importantly, this may be the beginning of an ongoing discussion. We also felt there was a disconnect between what we heard and what NARPAA agencies are experiencing state to state, in particular with regard to burdensome unfunded mandates. CMS suggests we take our issues to our respective states. NARPAA members are considering our position, after all, we are the ones that provide direct supports for people with disabilities, many dating back to the start of deinstitutionalization in the 1970’s. So the case for fundraising… At Anderson we provide superior services and we balance the budget. There is an obvious parallel between the escalating number of children and adults with autism, the need for supports and the high cost of service options. Government is making it clear there are only so many dollars to go around and the belt is tightening, this of course is said at the time government officials want to offer more options… I have been saying for years this day would come, but I feel it warrants repeating, law makers seem intent on permanently shelving entitlements. Therefore, we all must do our part. Families must be involved in both fundraising and advocacy. So is that really a bad thing? Not really – I believe it is satisfying to donate as well as advocate. I proudly support many charitable purposes, including Anderson. I am especially making the case to families who currently do not contribute to Anderson. We all have different financial situations, but everyone can give something. You can choose to believe that society should pay for everything but I guarantee you it will not. Please give generously to the agency that supports your family member and if you are with us, then please be a frequent and generous donor to Anderson Foundation for Autism!
Anderson Board of Trustees
Anderson Center for Autism operates under the guidance of two exceptional Boards of Trustees. We appreciate the contributions that each of these talented and generous individuals makes towards the achievement of our goals. Anderson Center for Autism & Anderson Center Services Inc. Francis M. Synan, Chair Eric D. Gorman, 1st Vice Chair Elizabeth P. Corcoran, 2nd Vice Chair John P. Pecchia, Treasurer Richard W. Lewis, Secretary Neeraj Alimchandani,Trustee Rebecca M. Blahut,Trustee Joan Blutreich,Trustee Paul A. Colbert, Trustee Justin L. Cole, Trustee Margaret Cusumano, Trustee David J. Hay, Trustee
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Joseph Lepore, Trustee Jeanne R. Raichle, Trustee Edward J. Sullivan, Trustee Rebecca A. Valk, Trustee
John Maserjian, Trustee David W. Melby, Trustee Christopher R. Mertens, Trustee Catherine B. Merryman, Trustee
Anderson Foundation for Autism Barry R. Feirstein, Chair William F. Melcher, Treasurer Tondra Lynford, Secretary Susan Angeles, Trustee Gregory S. Burns, Trustee Vance A. Gage, Trustee Kevin J. Kollar, Trustee Julie H. Krieger, Trustee
Lifetime Honorary Trustees Elinor “Jean” Arnold Ellen L. Baker Margaret Cusumano Pompey H. Delafield Michael McNaughton David W. Melby Jaime Rodriguez-Tellez Wilfred Rohde
John A. Scileppi Sarah E. Sholes Fritz Sonnenschmidt Anderson Advisors David Barrett Alayar Kangarlu Joseph T. Kirchhoff Richard Bright Edward L. Bunting Christine Cihi
Anderson goes to Washington! Eight members of Anderson Family Partners (AFP) went to Washington DC in June. Tondra Lynford, AFP’s Advocacy Chair, spearheaded this important advocacy trip. The group included parents Susan Angeles, Kevin Kollar, Jeff Lynford, Jeanne Raichle, Roland Elliott, grandmother Jackie Glover and Anderson Advancement Officer, RonDeena Ross. They met with eight members of Congress representing New York, Missouri, Mississippi and Utah. Tondra Lynford explains, “We wanted to thank those involved in supporting autism legislation as well as create awareness around the fact that current funding supports research and early intervention for children on the spectrum. There is nothing on the federal level that supports adults who are transitioning into adulthood.” Each parent presented his or her own personal testimonial during meetings. “None of us are professional advocates. We formed AFP because as parents, we wanted to be actively involved in supporting Anderson’s mission,” adds Tondra.
Dovidenia and Adiòs Two of Anderson’s International Fellows have completed their one year training. Lucia Hrebenarova, is from Slovakia. She has a PhD degree in Special Education. She had intensive training in the Clinical Department. She is preparing for her BCBA (Board Certified Behavioral Analyst) test and will be only the third person in Slovakia with this certification. Lucia is returning to her job as an assistant professor at University of Presov in Slovakia. The International Fellow, Noelia Requeijo, is from Spain. She has a post graduate degree on Geriatric treatment and Geriatric from Spain. She entered the Anderson Center in July 2014 for a 12 months internship. From the outset Noelia has demonstrated a high degree of enthusiasm for working with individuals with autism. Noelia completed her training in the areas of direct support, special needs teaching and behavior support for individuals with autism. Noelia is a bright, capable person, who relates well to Anderson’s staff and supervisors.
Angeles reveals the struggle of many aging parents still acting as caretakers, “At 60, I feel like my role as a parent is not quite done – I am still advocating for my 30-year-old son. What keeps me up at night is what happens to him when I am no longer around. I rely on Anderson for his future.” Jeanne Raichle adds, “If we didn’t have a place like Anderson for our daughter, we could not have physically survived.” The group captivated members of Congress, many of which who shared their own stories of loved ones on the autism spectrum. “They relaxed early on and were really responding to us as parents,” says Tondra. Kevin adds, “In many ways, we were educating them.” The group’s expectations of the trip to our nation’s capital were exceeded. AFP will host a Legislative breakfast on Anderson’s campus October 23rd. andersoncenterforautism.org
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2015 Autism Tomorrow Conference Anderson hosted their annual “Autism Tomorrow” conference on Saturday, May 2nd. For the first time, the event was held at the Recreation Center. The distinguished group of speakers included, Andrew Solomon, best-selling author, professor and founder of the Solomon Research Fellowships in LGBT Studies at Yale University; board-certified behavior analyst Vincent J. Carbone, director of the Carbone Clinics in Rockland County and in Dubai, United Arab Emirates; Russell Granet, executive director of Lincoln Center Education, who has spearheaded efforts to expand Lincoln Center’s programs for schoolchildren; and Dr. Paul Wang, head of medical research at Autism Speaks.
Tracy Mohrmann, RN, CDDN attended the Developmental Disabilities Nurses Association 23rd Annual Conference in Atlanta, GA in May 2015. Sessions provided current evidence-based information presented by leaders in the field of developmental disabilities. Meeting with nurses from around the country provided Tracy the opportunity to share some internal departmental oversight used as a “running audit” by ACA. With a visual aid “Continuity of Compliance”, Tracy presented the information as a weekly to annual flow-sheet. This demonstrated a tool to promote life-long wellness while complying with regulations. Nationwide, nurses like Tracy will continue finding creative ways to solve problems. According to Tracy, “Sharing ideas with others who share your passion? That’s half the fun!!”
The Anderson Players, adults from Anderson community-based programs, presented their original play “the Apartment”. This performance demonstrates transitioning into a shared apartment. The play was followed by a Q & A with the cast. It was definitely a hit!
New Teaching Garden Inspires Students and Adults This spring Anderson erected a hoop house on campus. Giving our students and adults another innovative work opportunity is important to everyone at Anderson – as well as feeling a sense of accomplishment. All 23 classes plant, water and will soon harvest! Anderson is also working with John and Luigi Coppola of their family’s namesake restaurant in Hyde Park to create an Anderson dressing using the herbs we grow. Stay tuned!
Gregg Paulk, Anderson’s Director of Information Technologies, received a very pleasant surprise while attending an Ultipro tranining conference this spring. Anderson was given a $2,500 check! Ultripro awarded each of the 84 non-profits that uses their software a gift. Thank you Ultipro for being such a wonderful partner to Anderson and so many other great agencies.
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Team Anderson at the Inaugural Walkway Marathon! He needs help brushing his teeth and choosing clothes. He does not fully understand time or distance. And when he runs, guides accompany Jonathan Brunot to ensure he manages his water intake and electrolytes. Brunot is on the severe end of the autism spectrum and is an adult in the Lifelong LearningSM program at the Anderson Center for Autism in Staatsburg. He takes part in a day-habilitation program, which includes vocational outreach at the Culinary Institute of America. But none of that has stopped the 26-yearold Wappingers Falls resident from running marathons — 16 of them in the past seven years, including Saturday’s Walkway Marathon. He has completed six New York City Marathons, one Ultra Marathon (30.1 miles) and seven Boston Marathons. “Jonathan is a beast,” said his brother, Verlaine Brunot, who planned to run the final five kilometers of the race with Jonathan. “I wanted to run the last six miles. I am strong, but not that strong. At 5K (3.1 miles), I can stay with him and not slow him down.” That wasn’t always the case. When
Jonathan first enrolled in a running program, he had to be pulled or pushed around a track just to complete a lap. “He would walk every time he got tired, which was 10, 15 or 20 times per lap on the track,” Verlaine Brunot said. Things got so bad that his mother, Olga Brunot, once passed out after conveying her son around a fivekilometer training run. That, his mother said, was as close as the family came to giving up on running.
But Del-Cid believed it could work.
But with help from Steve Cuomo and Vincent Del-Cid, two coaches in the Long Island-based Rolling Thunder Special Needs Program, Jonathan began to make strides.
On Nov. 2, 2008, just two years after he took up running, Jonathan finished the New York City Marathon in 4 hours, 49 minutes and 52 seconds — fast enough to earn him a listing in the New York Times.
Del-Cid is a certified public accountant by trade, and a longtime endurance athlete based in Long Island.
“We bought 10 or 15 (copies of) the New York Times,” Verlaine said. (Del-Cid says the number was higher.)
“There is one reason I do this — for the mothers,” he said, becoming visibly moved as the Brunot family prepared for Saturday’s marathon. “They go through so much.”
Now, what once seemed beyond imagination has become a defining passion for Jonathan.
Little by little, Jonathan ran longer and more consistently, losing 20-25 pounds. His family was ecstatic. That’s when Del-Cid suggested marathons.
“It’s hard to quantify,” his brother said, “what it’s like to have someone who is that dependent, yet we can go to races and he is running with the coach and he is strong and healthy and happy and smiling.” John Ferro Poughkeepsie Journal Reprinted with Permission
“We were highly resistant to it at first,” Verlaine Brunot said. “It seemed insane. We were saying, ‘Here we are playing with house money. Jonathan happens to love running. Why would we go ruin it by making him run a million miles?’”
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Anderson’s Blue Knights Bring Home Over 100 Medals at this Year’s 31st Annual Hudson Valley Region Spring Special Olympics at West Point!
To focus on an individual’s abilities, and not their disabilities, empowers people to strive toward the highest goals imaginable. Organized sports encourage individuals to demonstrate their talent, focus, and passion and to awaken new, hidden ambition. You can now sponsor our athletes at various levels.
Interested in sponsoring our Blue Knights? Visit andersoncenterforautism.org/ sponsorandersonathletics for sponosorship information.
Like our Blue Knights on Facebook to see our athletes in action! Facebook.com/ AndersonAthleticsBlueKnights
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On Saturday, April 25th ninety Anderson athletes competed in the West Point Special Olympics games. It was a perfect spring day for the hundred parents, families and staff to cheer on the Blue Knights. “This is one of the best days of the year for our athletes”, states Kathleen Marshall, Division Director of Program Services at Anderson. “The sky divers from the West Point Jump Team that close the opening ceremonies are always a big hit.” Susan Angeles, proud parent, and Andrew, supportive sibling, drove up from New York City to cheer on Paul. “It is wonderful that each athlete is paired with a cadet. You see how much these young people truly care about these athletes,” Susan said. The Blue Knights received over 100 medals throughout the day! What is a terrific accomplishment. Even more important was the sense of pride and satisfaction you could see on each person’s face. It truly was another amazing day at West Point.
Expressive Outcomes Shows Throughout the Valley
Creating Autism Supportive Environments within DutchessCounty
Expressive Outcomes artists have been working diligently on the preparation of their upcoming art show in New York on September 2nd, 2015.
Anderson Center is pleased to announce that we received a grant through Dutchess County’s “Think Differently” initiative.
This is another opportunity for artists to display their work in the community. Expressive Outcomes has already had four shows this year. Our first show was held at Scott Dutton and Associates, in Kingston, NY, called Art Works. Here our artists sold ten pieces. Next we exhibited our work, at Ulster Savings Bank in Red Hook, NY, where we now have a piece on permanent display. We participated in an art show at Mount Saint Mary’s College, in Newburgh, NY, where our artists were able to interact with other local artists. Our most recent show, Art Works II, was held at the Howland Library in Beacon, NY. We have been asked to exhibit at another show next year. Excitement grows as we the NYC show “Shades of Creativity” draws closer. We hope to see you there!
This award will support our Autism Supportive Environment program. We are now offering up to 4 hours of consultation services for businesses within Dutchess County at no cost; the goals of this program include: • Assisting businesses in understanding, serving and supporting individuals on the spectrum and their families; •Increasing opportunities for individuals and their families to enjoy local establishments; and • Raising awareness of Autism in the region Anderson Center Consulting recently launched the program by providing two trainings for business owners and staff. Attendees gained a better understanding of ASD and also learned valuable strategies to support individuals with autism and their families. We are currently working with a wide variety of businesses including: a hotel, a national park, a recreational facility, and a bank. Applications are still being accepted; if you are interested in learning more about this program please contact our Consulting Coordinator, Lisa Lawrence, at 845-889-9616 or email us at: AndersonConsulting@acenterforautism.org.
andersoncenterforautism.org
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4885 Route 9, P.O. Box 367 Staatsburg, NY 12580 PHONE: (845) 889-4034 ADMINISTRATIVE FAX: (845) 889-3104 andersoncenterforautism.org
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Anderson Center’s Upcoming Events Visit andersoncenterforautism.org/events for a list of all upcoming events