After we highlighted Farmsteads of New England as January’s “Home of the Month” on our new Housing Portal, we received many requests for more information about this housing initiative. For that reason, we asked its Founder and Executive Director, Deborah DeScenza, to blog about her experiences with her son, Andrew, and about how FNE got its start.
“What is going to happen to Andrew when he grows up?” I recall asking myself this question as I sat at my desk one night when my son was about 8 years old. Andrew had been diagnosed with autism years ago, and all of my focus and energy up to that point had been dedicated to working with his school to make sure he received the supports and services he needed there. But now I had a new concern: his long term future.
When I researched what services were available in our state, I found that there was basically only one model: adult foster care for residential services or competitive employment/volunteering/ “van therapy” during the day. I felt my son needed something different, so I started thinking about Andrew’s interests and needs, as well as his strengths and weaknesses. As Andrew grew older, it grew more and more difficult for me to take care of him alone. He was non-verbal, needed help with personal care, and he had developed insomnia and obsessive-compulsive tendencies that were very difficult to manage day in and day out. Andrew would need a staffed residence with 24-hour supervision and day services that would allow him to do activities that he could understand the meaning of. I also wanted him in a rural setting where he could safely expend his excess energy. It dawned on me that a farm might just be a wonderful place for him to live because it would provide him with the “room to roam” he needed without the worry of traffic on busy streets, and it would allow him to utilize his assets while minimizing the impact of his social limitations. But I also knew that we needed to ensure that he was not isolated and lonely.
Thus, I began to develop the idea of a farmstead that provides the opportunity for several people with autism (or other developmental disabilities) to live and work together in a supportive farming environment – an environment that gives these individuals the support they need to do meaningful work, to live a healthy lifestyle, and to develop genuine and long-lasting friendships. I also wanted a work environment that gives the staff the support they need in order to prevent the burn-out that is so prevalent in their field. I wanted them to have the chance to work as part of a team and to have help readily available if needed. So I developed a model in which the staff works in shifts as mentors to the individuals with autism – they live, work, and play alongside the farmers, modeling appropriate behaviors and interactions instead of simply supervising or coaching.
Today, after a lot of hard work, and some good fortune, our Farmsteads of New England consists of 6 residential buildings. Each one consists of four one-bedroom apartments surrounding a common room. In most cases, there are three individuals with autism or other developmental disabilities and one non-disabled mentor living in the building. We are able to provide essential supports to adults with a wide range of needs. We have also focused on developing a good working relationship with the local community which benefits everyone involved.
Next, we hope to replicate our model throughoutNew Englandin the years to come. We have already started day services at a second farm inNew Hampshireand hope to add residential services there in the future. In my opinion, it makes sense to replicate a working model with the backing of an existing and successful organization, rather than force other families to start from scratch if they want a similar future for their child.
For more information about Farmsteads of New England, visit them here.
For more information about the new Autism Speaks Housing and Residential Supports Portal and tool kit, please click here.
This is a guest post by Allison Rogers. Allison is a lawyer in private practice in Washington D.C. and volunteers actively with Autism Speaks in their housing policy initiative. She has a younger brother, Adam, who has autism.
For as long as I remember I would ask my Mom these questions. Is Adam going to live at home forever? No. Will he live with me when I am older? He will have a house of his own one day. When’s that going to be? I don’t know, sometime after he graduates high school. Who’s he going to live with? Ideally Jeff and Joe, maybe a couple of other boys, and a support staff.
I will be completely honest and admit that I had no role in my brother’s summer of 2010 move into a group home. Throughout the years, my Mom promised us, without exception, that Adam would have a home of his own one day. I think this was her way of protecting all of her children and not just the one who needs the most protection. She took on the responsibility, not only because she was in the best position as a mother to advocate on his behalf, but because she did not want to leave this huge responsibility of mapping my brother’s future to her daughters. As the matriarch of the family she set the tone for familial relationships. Stacey and I, as sisters, must love and support Adam, but Shari, as the Mom, will make the big decisions.
Fast Forward to June 2010. I am locked in the basement of the law library studying for the bar exam, receiving texts from Mom. He’s moved out. Are you ok? I feel weird. Do you need to talk? Ok.
We talked. I did my best to assure her it was a transition, transitions are always hard, and once she gets used to the new living situation both she and Adam would be better off. I tried to comfort her. I remember saying, “it’s like when I went off to college; it’s like when Stacey went off to college. It’s a huge, but completely normal adjustment. And most importantly, he’s FIVE MILES AWAY.” And that’s how, just for a moment, the roles switched and I became the protective one, but not of Adam, of my Mom.
August 2010 I made my first visit to Adam’s home. The descriptions I heard that the house is huge; the house is beautiful; the house is individualized to your brother’s and his housemates’ needs were not inaccurate. The house is huge. The house is beautiful. The house is Adam. Adam lives with four other boys. Two of the boys, Jeff and Joe, Adam grew up with. They each have their own rooms, reflecting their personalities, and their bedroom doors are adorned with the first letter of their names. They have ample living and dining space, a back and front yard, a television and even a Wii.
I love Adam and his new independence. Of course, the house did not cure him. He’s still Adam. He still has his moods and he will still have his nights where he stays up all night shouting to whoever will listen. He still repeats words, sometimes hundreds of times, and he will still rip his shirts and blankets for no apparent reason. Yet he is happy. He is happy with his house. He is happy with his friends. He is happy to come home to my parents’ house and he is happy when we go to the house to visit him. I see pride when he shows me his room, points to the family pictures on his bedroom wall, shows me his Wii bowling skills and sets the dining room table.
I can honestly say Adam moving into a group home has given our family the best of both worlds. He has independence. My parents have their independence. Yet we are five miles and ten minutes away from family time.
This is a guest post from Mark L. Olson in response to the New York Times article, ‘Navigating Love and Autism.’ Mark lives in Henderson, Nevada where he is the only parent of a 16 year old daughter with autism; Chairperson, Community Living & Employment Subcommittee, Nevada Commission on Autism Spectrum Disorders; and, President & CEO, LTO Ventures, a 501(c)(3) nonprofit company developing live/work/play communities for adults with autism.
I read with mixed emotions the December 26th New York Times article “Navigating Love and Autism” about Jack and Kirsten, a young couple with Asperger’s Syndrome discovering how to have a relationship with each other. The romantic in me found their story inspiring and hopeful. But as the only parent of a teenage daughter with autism, another part of me felt frustration about the lack of attention to and help for autism’s “fly-over” population — the huge group of teens and adults who are often nonverbal, may never expect to live independently, yet deserve the chance to choose the kind of life they want to live.
“Fly-over” is a term I heard often growing up in the Midwest and attending University of Kansas. It refers to the majority of the US between the East and West Coasts that airline passengers look down on when they fly over. It also refers to a mindset in the media that the most valuable audiences are located in New York and Los Angeles, and to which their programming overtly caters.
Autism is a broad spectrum disorder just as the U.S. is an expansive land mass and melting pot. A favorite expression in our community is that “if you’ve met one person with autism, then you’ve met one person with autism.” Our community and efforts to help persons with autism benefit from all the awareness we can generate, but sometimes it feels like that attention falls largely onto two ends of the spectrum.
At one end, thanks to organizations like Autism Speaks and others, kids as young as 18 months benefit from more research dollars than ever directed toward finding the cause of and a cure for autism, while insurance mandates are in effect in the majority of states that emphasize funding for ABA therapy and early intervention, diagnosis, and treatment.
At the other end of the spectrum are the Aspies and HFA teens and adults like Jack and Kirsten who are the focus of media coverage, movies, federal programs such as Medicaid and the President’s Year of Community Living. They are also the primary beneficiaries of the Protection and Advocacy (P&A) Network created by Congress and self-advocacy organizations bent on eliminating all barriers to living and working exactly the same lives as “typical” Americans.
But what about the fly-over population? My daughter is one of them and we live this struggle every day. (I also run my own 501(c)(3) nonprofit company developing live/work/play communities for adults with autism and chair a subcommittee for the Nevada Autism Commission on community living and employment.) I see this issue from many perspectives and I’m increasingly disheartened by the chasm of resources and choice expanding between our community’s newest affected and our most capable.
My daughter is 16 and nonverbal, although she can hear and understand some of what is said to her. She’s not high-functioning enough to enjoy true independent living, and diagnosed at age 12 she was too old to benefit from aggressive early intervention protocols. I expect she will stay in her special needs school until her IDEA eligibility runs out and we are planning for guardianship now. But I’m also 39 years older than her and while I like to believe I’m immortal, I’m pretty sure I’m not. So that means planning for where she is going to live, what kind of work she might do, and what chance at a social life she can expect.
Let’s start with housing options. My daughter deserves the right to choose any residential setting in which she wants to live. It is estimated that 85% of adults with autism live with parents or a family member until they can no longer be taken care of. As with many kids with autism, there are daily living skills she does well, and others (bathing, feminine hygiene, house cleaning) that are a challenge. Some disability self-advocates argue her only option outside of my home should be in her own apartment or home no closer than 1000-1500 feet from any other disabled person.
She can’t live alone in a scattered site apartment because she doesn’t know how to cross a street safely, or how to avoid neighbors who might bully, exploit, or abuse her. It’s a ludicrous notion to expect her neighbors to be her “it takes a village” safety net. She can feed herself, but she cannot use a stove or microwave to prepare a hot meal. A setting where she could go to eat or pickup meals of her choosing would be ideal.
A planned residential community optimized to accommodate her autism such as a disability-based campus or farmstead would be a great solution. Unfortunately, Medicaid, certain self-advocacy groups and the P&A Network are doing everything they can to deny her freedom of choice and impede development of innovative settings. (Read more at “Choice v. Olmstead“)
Now let’s talk about work. My daughter is blessed with exceptional physical strength and decent gross motor skills. With supervision she can do fine motor projects and follow multi-step instructions…for a while. But she cannot speak, read or write. She will never be able to pursue competitive employment on the open market, but that doesn’t mean she can’t earn a minimum or higher wage. A work environment created to accommodate and develop her abilities would be ideal. But again the same forces are at work to eliminate these optimized settings as discriminatory.
Would she like a social life? A relationship like Jack and Kirsten? I don’t know. I do know she is highly sociable and enjoys the company of affected and typical kids and adults. A setting where she could freely walk around, meet up and hang out with persons like her and enlightened members of her surrounding community would be ideal. But transportation, availability of programs, and lack of funding marginalize anything except a public park or shopping mall.
Jack and Kirsten’s story is informative and heartwarming. But as we enter 2012, I implore the autism community, media, government and especially those self-advocates who resist progressive thinking and innovation, to not forget the impact they have on our “fly-over” population. Their story deserves to be told too. They deserve the right to choose how they want to live.
For more information:
I’d like to thank Danielle, and the Board of Hope Autism for giving me this honor. I means a great deal to me to be here with members of the autism community. This community has embraced my family, and it is a place where I feel very much at home.
I’d also like to thank all of you, for being a kind and supportive audience; because I am a first time honoree, and this is my first speech.
So here goes:
Like Brian, who spoke so eloquently, and lovingly about his son, Christopher, I would like to tell you a little bit about my son. So you will hear about two remarkable young men tonight.
I have a 14 year old son named Liam — I hope for him every day. I hope for him fiercely. I hope for him in the very special way that the mother of a special needs child hopes.
I hope – that he continues to grow up handsome and funny –a truly loyal friend – and maybe, even a wonderful, loving husband some day – like his dad.
I hope – he grows up to be an avid student and learner, like his big sister. Not just an academic student, but a student of the world, who cares deeply, and gives back to the community, like she does.
I hope – that as he grows up along side his little sister (whom Liam “affectionately” calls Pesky – short for Pesky Little Sister) that he maintains a sense of fun, and a love of life, like she does.
I hope for all of this, and so much more. What I know, is that Liam is growing up with autism, and that he’s doing a terrific job.
Liam’s success stems from the first place that truly gave me hope, the Newmark School, in Plainfield, where Liam is currently in 8th grade. In addition to changing Liam’s life completely, Newmark taught me that I am a good enough mother.
They taught me that I can do everything I need to do to ensure that Liam grows up well educated, with appropriate social skills and with the tools he needs to be successful in his life.
The 2 founders and directors of Nemark are here tonight – Cindy Allman and Regina Peter. Cindy and Regina, I thank you from the bottom of my heart – there is not a chance that Liam would be where he is today without you, and without Newmark.
But Liam will not always be at Newmark. He is rapidly becoming a young adult – and this is happening a bit more quickly than I might like. I always swore that I refused to go through puberty with Liam, and yet, here we are!
Hope Autism gives all of us hope for this new challenge that is young adulthood. Hope Autism is one of the few organizations that is focused on what happens when an autistic child becomes an autistic adult.
I am sure that most people outside of our community have no idea what our children face as they grow up.
But those of us in this room know that help comes from people who understand the challenges .
Who have the skills and determination to overcome them – and who never, stop hoping.
So please, all of you, continue to hope, for Liam, for Christopher and for all our children and young adults living with autism.
Hope - that we can help them to grow up strong and confident.
Hope - that they will have friends and a support system to guide them, and love them.
Please, hope – that they will be happy.
You can download the Family Services Sibling Support Tool Kit here.
I am moving out. It is finally happening. Not like all of my other stints away. In this move, I will transition to the start of the rest of my life. Yikes. Don’t get me wrong, I have lived away before. But I always returned home, back to the nest.
I went away for college, but came home. I spent a period of time in Ireland, but came home. Oh yes and I lived down under in Australia, not once, but twice. Then I did the gypsy thing in New York City, bouncing from sublease to sublease. Again though, I came home.
Ever since Jeff moved into his group home, he has been on my oldest brother Tommy and me to move out as well. He moved, why haven’t we?
Believe me, the irony is not lost on us.
Growing up, the extent of our family’s travel was a 3-hour car ride out east. Professionals advised my parents against having my brother Jeff travel via airplane because of his sensory issues. So we just never did. It was fine. Our family vacations have always been wonderful, just different. It is the way it is.
My parents, bless them, have encouraged Tommy and I to go and see the world. They financed each and every trip and encouraged us to live each experience to the fullest. Believe me, I did, drinking in every moment, but something was always missing. Jeff.
Autism has always been a part of me. I don’t want to be dramatic, but I can literally trace every single decision back to autism in some way. I never thought anything of it. We come from a small town where everyone knows us and looks out for Jeff. During my times away, I wasn’t Jeff’s sister, I was just Alison. No amount of explaining Jeff can do him justice. He is so much more than just words, he is my heart. Majority of my post-high school friends have an unclear picture of my brother.
I have lived my life, often times to extremes. Nothing is ever really mundane and the pendulum swings. Returning home always brings me back to center, to a balance.
Osho (2006), a professor of philosophy and guru, takes the approach of Lao Tzu, “Balance is something that comes out of experiencing all the dimensions of life. Balance is something that happens […] Balance has tremendous beauty and grace.”Jeffrey navigates through life in a beautiful and graceful way. He is inspiring. Jeffrey shows me true beauty and he really is my grace.
But rather than get on my enlightened urbanite horse, I will quote Hoddington Carter that says more than any blog I can ever write. Carter says, “There are two lasting bequests we can give our children: one is roots, the other is wings.”
My parents have given me my wings. They have given me the tools to be successful, but more importantly the love and support to forge my own path. They have shown me how to treat people and how to live a full life through their stellar example. I hope they know that I carry them with me everywhere and just how grateful I am.
But it is Jeffrey that has given me roots. For I know every time I head home to visit, I will cater to his every need. He will continue to point out every imperfection on my face and I will continue to dance or sing to him on cue. No matter what I may deem important or value in a materialistic sense will all be left at the door.
Because if there is one thing I have learned about autism, is that it strips you down. Jeffrey doesn’t care about the fluff: what cool event I went to or fabulous article of clothing I just acquired. He just wants his sister. And his sister, I will always be.
Look out New York City!
Osho. (2006). The book of understanding. (p. 26). New York: Crown Publishing. Retrieved from http://ow.ly/7jbxm
Please join us on Tuesday, October 18 at 4 p.m. (EST) for a live chat with Rachel Pollack, Chief Operating Officer and General Counsel of Job Path as she answers questions about employment in recognition of October as U.S. Department of Labor’s National Disability Employment Awareness month.
Since 1978, Job Path has helped people with developmental disabilities find and excel in mainstream jobs where they work alongside non-disabled colleagues. Job Path graduates work in banks, retail establishments, restaurants and other organizations including: Barnes & Noble, Bed Bath & Beyond, Modell’s Sporting Goods, Office Depot, ShopRite, Stanley M. Isaacs Neighborhood Center, T.J.Maxx, Trader Joe’s, Walgreens and Willner Chemists. Job Path has also worked with law firms such as Paul Weiss, Rifkind,Wharton & Garrison; Cleary Gottlieb; Skadden, Arps, Slate, Meagher & Flom & Affiliates, LLP; and Cahill Gordon & White. Our employment programs are designed to help anyone who wants to work, no matter the amount of support he or she might need.
World-Class Experts and Parents Explore the Transition of Children on the Autism Spectrum into Adulthood
September 30, 10:00 am – 12:00 pm ET/Doctor Radio, SiriusXM channel 81
This week on SiriusXM’s Doctor Radio Reports, host/veteran journalist Perri Peltz and a panel of world-class doctors, experts and parents of affected children examine the leading concern of parents with children on the autism spectrum—what happens as the children get older and the parents aren’t there to assist them? Will they be able to get a job, support themselves and find the support they need? In addition, what happens when parents are no longer there to provide care?
Geraldine Dawson, PhD, Chief Science Officer, Autism Speaks, Research Professor in the Department of Psychiatry at the University of North Carolina at Chapel Hill,Peter Bell, Executive Vice President of Programs and Services, Autism Speaks, Lisa Goring, Vice President of Family Services, Autism Speaks, Melissa Nishawala, MD, Medical Director of the Autism Spectrum Disorders Clinical & Research Program at the NYU Child Study Center and Jerry Hulick, Senior Planner with The Washington Group/Mass Mutual’s Special Care Planning Team join Peltz for this two-hour special, offering advice/tips on transitioning teens with autism to adulthood, including:
- how to find appropriate housing situations for your autistic child
- how to find support for their medical, psychological and social needs
- estate planning tips to cover the cost of long-term care
- establishing trust funds, applying for disability, and assigning guardianship for care and financial security after you’re gone
- the newest developments in diagnosing and treating autism spectrum disorders
- the latest in new medications and medication research to treat core autism symptoms as well as associated issues
Listeners are encouraged to call 1-877-NYU-DOCS (I-877-698-3627) or email firstname.lastname@example.org with their questions.
Doctor Radio Reports: The Future of Autism will replay October 1 at 6:00 pm and October 2 at 8:00 pm ET.