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:
This is a blog post by Tracey Daigneau, M.Ed., Director of Day Services at New England Village.
Finding meaningful work for an individual with autism can be quite a challenge, needing to match skills and motivation with an appropriate job within the community. When you factor in external factors such as the economy, employer biases and lack of awareness of ASD it often becomes an overwhelming task. At New England Village’s Employment Services program, we have the challenge of finding varied, consistent and meaningful work for over 70 adults, many of whom have ASD.
For the past twenty years, we have sought to provide work for our residents and day participants, primarily in the field of manufacturing. Jobs such as assembly and packaging were ones which the vast majority of our population could do and enjoyed, often earning a nice sized paycheck as a result of their hard work. Unfortunately, the past decade has seen quite a shift in manufacturing throughout Massachusetts. Jobs becoming automated and going overseas, companies moving out of state or turning to other sources of inexpensive labor to cut costs has resulted in a significant decrease in available work opportunities for the individuals we support.
The unenviable task of finding year round work falls upon our program director, Rick Moulton. A career in sales as well as the past decade spent in Human Services has served Rick and New England Village well, but the challenges listed above have made his job an extremely difficult one. When work is not consistent, Rick hears about it from persons served, their families and even our own staff. All are aware of the challenges he has but the bottom line is our expectation is to provide work for each and every individual, all with varying levels of skills and motivation, every day they attend our state of the art work center.
In an effort to lessen our reliance on available contract work in manufacturing, New England Village decided to take our destiny into our own hands by starting several of our own “business ventures.” Established businesses in Landscaping and Cleaning had made us cautiously optimistic that we could find another business that provided meaningful, enriching work and also fit our organizational mission and philosophy. We had previously done some packaging work for a local jewelry company and our success with this job combined with the interest many persons served had in creating jewelry led us to establish our third business, True Meaning Jewelry (TMJ).
We sought to create jewelry that fit our mission and as a result, decided to focus on developing a line of awareness jewelry. A variety of causes were investigated but it was our partnership with Autism Speaks which has played the biggest role in our success. Through this partnership, sales have increased dramatically, resulting in persons served assembling each and every piece of jewelry sold. Although the paycheck from this work is satisfying, the greatest benefit is the sense of pride one gets when they create a bracelet or necklace that has been ordered by one of our valued customers. We have shipped our jewelry throughout the country and recently had our first international order! Although many persons served still enjoy and benefit from the somewhat repetitive contract work described above, TMJ has become the job of choice for many individuals. It fills a need which each of us has when it comes to our job: to feel valued, challenged and ultimately fulfilled.
As we move forward into our third full year of this business, it is not without its challenges, much the same as those any start up business faces. Having enough volume to keep several people busy daily has been difficult and we have attended various local and state events such as the Greater Boston Walk Now for Autism Speaks as a supplement to our web based sales. Although we have run a fairly significant deficit each year with TMJ, we are able and willing to continue this business due to it fulfilling our primary goal of providing work to persons with ASD and other developmental disabilities.
Autism Speaks has been a tremendous partner to New England Village and their willingness to promote and market our autism awareness jewelry is something that we are proud and appreciative of. We remain hopeful that the partnership we have established with AS is one we can duplicate with other national foundations and associations which will ultimately result in additional work opportunities for those we support.
I was struck by a recent blog on this site that stated “All parents want the same things for all their children: loving friends, good health, work that is meaningful to them.” I hope some readers of this blog realize that they are not in this alone and that there are many committed professionals in the field that support adults with ASD, hoping to make a difference in the employment opportunities they have.
The Interagency Autism Coordinating Committee (IACC) Full Committee Meeting will take place on Tuesday, December 14, 2010 from 10:00 a.m. to 5:00 p.m. EDT, at the Bethesda Marriott in Bethesda, Maryland.
The IACC will discuss plans for the annual update of the IACC Strategic Plan for Autism Spectrum Disorder Research. For more information and to register please visit the IACC’s official website.
IACC Services Workshop: Building a Seamless System of Quality Services & Supports Across the Lifespan
The Interagency Autism Coordinating Committee (IACC) will hold an IACC services workshop, “Building a Seamless System of Quality Services & Supports Across the Lifespan” on Monday, November 8 in Rockville, Md. The meeting is free and open to public and will also be available as a live videocast.
The workshop will focus on policy issues related to the system of services and supports for people with autism spectrum disorders and their families. Visit the IACC website for more details.
This guest post is by Autism Speaks staffer Kerry Magro. Kerry, an adult who has autism, is a rising senior at Seton Hall University, majoring in Sports Management. He started an Autism Speaks U Chapter: Student Disability Awareness on campus to help spread awareness and raise funds for those affected by autism. Autism Speaks U is a program designed for college students who host awareness, advocacy and fundraising events, while supporting their local autism communities.
One issue, in my opinion, that isn’t addressed enough on college campuses, is accommodations within the residence halls for those with disabilities. Yes, from time to time you will see a residence hall with an elevator, maybe bed shakers for those who are hearing impaired, but does that make a residence hall “disability friendly?” I don’t think so. A disability friendly residence hall should be accommodating to all disabilities, especially autism.
For people just starting college, living away in a dorm can be a difficult transition. For an individual with autism who is affected drastically by change it can make that transition almost impossible. The argument to this, is that those affected by autism who actually attend college are just a small enough quota where it doesn’t really matter. The thing is, most accommodations for those with autism in the dorms just rely on having a good and understanding friend. It’s easy in college to fall into a pattern of anti-social tendencies when work builds up on you.
I have seen this from every angle imaginable. My freshman year in the dorms, I was a resident. During my sophomore and half of my junior year, I was a Resident Assistant (RA) who helped residents while living in the dorms. Living in the residence halls wasn’t much of a difficulty for me, but that was because I had great friends early on who supported me in everything that I did. Being able to socially get my way through that first year, where I was seen as enough of a leader to be one of the only autistic RA’s not only in New Jersey, but in the country.
So what can autistic individuals living in the dorms do to make themselves ready for the transition? Firstly, strongly consider requesting a single room. Most colleges are very willing to give someone with a registered disability a single. I have lived alone and have loved the benefits. Mainly, the best benefit is that you have your own place to unwind. You don’t have to worry about whether you get along with other individuals. The pros outweigh the cons in most cases.
Secondly, make sure you get yourself out there. Most residence halls have programs within the first couple of weeks of school to get people meeting your fellow peers. Most residence halls will also have a peer support group for those with disabilities where you can interact with others who have similar difficulties within the dorms. We also live in a technology related world, so if you don’t feel comfortable with face to face conversations, virtual communication (Facebook, instant messaging, texting) is a great way to practice your social capabilities. Just make sure it doesn’t become a habit, if you are never leaving your room!
Take some time to meet with the director of your dorm. If you are open with them about having a disability, they can’t turn you away, and have to give you proper accommodations. You need to force yourself out of your comfort zone because that’s where the most progress can be made.
Now, this is a process. There is no game plan to every disability. You have to create your own plan of attack. Independence is not learned overnight either, so take the steps needed to make your own personal plan and then follow through.
(This is one of my Autism Speaks U related blog posts. If you would like to contact me directly about questions/comments related to this post I can be reached at firstname.lastname@example.org. Thanks everyone!)
This “In Their Own Words,” is written by Glen Finland. She is the author of “Next Stop,” a memoir about raising her autistic son to adulthood and learning to let go.
Last year my autistic adult son David wrapped up twenty years of education, ten of them spent in private school, the other half in public school. And, hindsight being 20-20, here’s what educating a high functioning autistic son like David taught me. It’s simple mathematics: Send your kid to public school and keep your money in your wallet. You’re going to need it for what happens next—because what happens next is the rest of his life.
Parents of a young adult with special needs face an unending management of another person’s life over the decades ahead: housing, transportation, insurance, clothing, food, job coaching, medical expenses, and, of course, quality of life expenses like entertainment, vacations, and even pets. Think of how far the tuition fee of a single year of private school could go toward taking care of some of these expenses down the road. Now multiply that figure by twenty. The numbers will tell you if it’s a wise investment.
In public school with a good IEP, the services are free. They should be; you’ve already paid for them with your taxes. Your child will also learn in less of an isolated bubble—and yes—be forced to toughen up a bit by facing the real world struggles of life in the quicker moving mainstream. Don’t expect runaway success there. In fact, be prepared for regular bouts of failure. But no matter how painful the lesson, down the road your child will be that much better equipped for the the daily slights he’s sure to incur—those careless, casual assaults on his spirit that he will face simply for being differently abled.
For example, it has come to my attention that my 23-year old son is now a heavy tipper. These days he drives a 54-mile roundtrip each day to his job as a custodian at a federal office building outside the nation’s capital. He’s a good driver, but when he stops off for coffee along the way, he might pull out a $20 bill to pay for a single cup of java, then walk away. His generosity is not because he’s got such deep pockets; it’s because he wants to avoid the impossible math involved in the exchange and, even more, the eye contact that goes along with it. Whose pocket that leftover chunk of change ends up in is totally dependent upon the scruples of the particular cashier. It took me months to figure out where all his change was going and how to remedy the situation with a few five dollar bills, but these are the kind of real world surprises that continue to sneak up on us every day. This reminds me to be careful about who I allow to “keep the change” when it comes to planning ahead for my son’s future.
You know, it’s true what mothers have always said about the time with our children: “The days go by like years, and the years go by like days.” So go ahead and let your child ride the big yellow public school bus for now. It’ll do him no harm. And that way he can count on your really being there for him once school lets out for good.
“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to email@example.com. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.
It was July 30, 2006, and the first day of relief from a record breaking heat wave in the San Francisco Bay Area. I stood anxiously by the escalator at the Oakland Airport waiting for my twenty-year-old son Matthew to arrive from Pennsylvania. Matthew is autistic and had been attending a special residential school there since he was 15.
He would be home for a five-week break. Worried that he would be lonely and adrift as in summers past, I hired a companion who worked at his school to fly Matthew home and stay with us for three weeks.
His name was Kim, a twenty-five-year old from South Korea who had joined the staff of Matthew’s school just a year earlier. I had heard good things about Kim, but was nervous because our communication through phone and email, though cheerful, had been awkward. His English was difficult to understand, and I wasn’t sure he understood the notion of “friend to hang out with” rather than “policeman”. Matthew was painfully aware of his disability and need for support, but despite his innate social ineptitude, he craved independence and friendship, and wanted to be viewed by the world as a regular twenty-year-old.
In the past when I had hired “friends” for Matthew, I’d had the benefit of meeting them first in person to see if the chemistry was right. When Kim and Matthew came into view at the top of the escalator, I saw no chemistry. My son, wearing a t-shirt, shorts and sandals, rushed ahead of his smiling companion.
“I’m not with him,” said Matthew, frowning in earnest. “I don’t need a babysitter.”
“He’s not a babysitter,” I said, shaking hands with the stranger in front of me, “Kim is our friend!” Matthew rushed ahead to the baggage claim. “Did you have a nice flight?” I asked Kim, who shrugged and smiled.
It’s gonna be a long three weeks.
The first few days of the visit Matthew avoided Kim, and my husband and I and our other two teenage sons tried manically to make Kim feel useful and at home, talking to him, struggling to understand his English, inviting him for walks and meals, and asking him to help with the dishes. By the third day, I was exhausted from smiling, talking, and suggesting activities for Matthew and Kim that fell flat.
“Do you want to go to the movies with Kim, Matthew?”
“How about a hike?”
Feeling like a prisoner in my own home, I left Matthew and Kim alone together while I took our four-month-old Labrador puppy, Cali, for a walk. When I returned, there was a police car in the driveway.
“He’s stalking me!” Matthew was telling the policewoman who had responded to his 911 call. Kim smiled nervously and paced around, and the officer looked confused. I explained the situation and apologized profusely. She said she thought she’d seen everything till today.
“Look, Matthew,” I sighed, “Kim is our friend. Will you please be nice to him?”
“Probably not,” was his response.
There was no way I could endure this kind of grief for three weeks, and I wondered if I should just pay Matthew’s friend for hire the full amount that I had promised him and put him on a plane back to Pennsylvania. But then I glanced at Kim who was stroking the puppy, and I could see he was a person who smiled even when he was hurt. Somehow I had to make his visit a successful one.
“Matthew has some yard work to do,” I said. “Could you do me a big favor and wear this puppy out?”
Kim nodded eagerly, and the two fled to a walking path around the corner. Later that evening, Kim took Cali for another walk, and came home looking exhilarated. Did we have any movies he could watch on his laptop, he asked? As I was reaching for The Sound of Music, my thirteen year old handed him the first season of “24″, a cult show among teenagers about the dangerous adventures of no-nonsense counter-terrorist agent Jack Bauer. The next morning Kim slept in, and admitted sheepishly that he had been up half the night watching the series.
“That’s OK,” said my thirteen-year-old, “We’re addicted, too!”
By the fifth day of his visit, Kim had settled into a happy routine of dog care and other chores, amiable family dinners and evenings with “24″. On day six, a Saturday, Matthew knocked on Kim’s door, and asked him if he wanted to walk downtown and get some pizza.
“I decided that I might like Kim,” said Matthew when they returned, and I heaved a sigh of relief, grateful that the web of reverse psychology that I had woven out of desperation snagged Matthew. I stopped counting the days until Kim’s departure, as the two bonded over daily walks downtown.
The morning of Kim’s departure, Matthew told him not to be sad-he’d see him in September. But Kim had a hard time saying goodbye to Cali, and knelt down to cuddle her one last time. He was still smiling, but I saw a tear cascade onto the puppy’s shiny coat.
“You are going to miss uncle Kim, aren’t you Cali? Let’s take your picture with him.” As Kim grinned for the camera, I was grateful that the painful scene at the airport three weeks earlier had unfolded so magically. It seemed that by turning our constant focus from our autistic son to the needs of our houseguest, Matthew was free to befriend his friend for hire in his own time and in is own way.
The next morning, an email message from Kim arrived. It remains on our refrigerator along with his picture with Cali.
So much thank you for you, and family, and my niece Cali.
It was a great 3 weeks for me….my best summer in life.
Thanks a lot for giving me such a nice memory.