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Learn More About January’s Home of the Month

January 19, 2012 1 comment

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.

The Best of Both Worlds

January 5, 2012 51 comments

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.

Autism’s “Fly-Over” Population

January 4, 2012 72 comments

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.

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For more information:

LTO Ventures

Community Living & Employment Subcommittee, Nevada Commission on Autism Spectrum Disorders 

Screen All Children for Autism

June 28, 2011 5 comments

By Geri Dawson, Chief Science Officer, Autism Speaks

Last week, a paper was published in Pediatrics that argued against the routine screening for autism by pediatricians. Three investigators who are part of the Autism Speaks Baby Siblings Research Consortium and I submitted a letter to the editor in response to this paper, which has now been published.  The link to the original article and the letter are provided below.  Our letter provides a strong rationale and empirical evidence to support the American Academy of Pediatrics recommendations that all children be screened for autism at their 18 and 24 month checkups.

This exchange highlights the important role of the scientific research in directly influencing policy and clinical practice.  We were able to cite research, much of which was conducted by Autism Speaks Baby Siblings Research Consortium investigators, to counter the inaccurate statements by the authors of the Pediatrics paper.

Read the letter, Why it is important that screening for autism be provided in routine pediatric carehere. The original paper is available here.

Finding Meaningful Work in Difficult Times

June 23, 2011 12 comments

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.

Click here to visit the True Meaning Jewelry web site.

What makes a community a good place to live?

April 1, 2011 54 comments

Simple conversation often provides our organization with valuable insight into the lives of our families, their triumphs, struggles, issues impacting their lives and helps us understand how to better serve the autism community’s needs. That’s why we took the conversation one step forward and conducted Autism Speaks’ very first online “Community Survey.” Designed as a “conversation starter,” the survey explored why their community is, or is not, a good place to live if you have autism. We asked if they were happy with the availability of services in their community, and specifically explored access to medical and clinical care including diagnosis, therapeutic services, educational services in public and private schools, inclusive or adaptive recreation and respite for families and caregivers.

We wanted to hear from all corners of the country, from people with autism, their parents, siblings, clinicians, therapists and anyone else with perspective on this issue — and the response could not have been better. Almost 1500 people engaged in the survey which was open for a three week period and more than 800 members of the autism community in the 48 contiguous states and the District of Columbia completed the survey. Thanks to everyone’s input, we came away with a wealth of opinions, personal experiences and information that has allowed us to identify the best communities to live in if you have autism. More importantly we heard what characteristics are valued by our families that make a community livable. We encourage everyone take a look at the rankings, which were just announced today, and see if your community made the list. We also want to know your thoughts on the issues presented in the survey to keep this vital conversation moving forward and in the public spotlight.  To view the results of the Autism Speaks Community Survey, please click here.

Adults with autism and their families often left without help after high school

February 24, 2011 19 comments

This is a guest blog post by Dr. Paul T. Shattuck. Dr. Shattuck is a national expert on disabilities, specifically autism. He has published a number of articles on the prevalence and course of autism as well as on policies and services for people with autism and their families.


Do the challenges of having an autism spectrum disorder (ASD) and the needs for special supports magically disappear in adolescence? No! But many families are pushed off a cliff when it comes to accessing needed services for their young adults with an ASD.

My team and I used data from a large national survey to look at the use of diagnostic medical services, mental health services, case management, and speech therapy during the first few years after leaving high school. In a report published this month in the Archives of Pediatrics and Adolescent Medicine, we found that overall rates of service use were 23.5 percent for medical services, 35 percent for mental health services, 41.9 percent for case management, and 9.1 percent for speech therapy. This compares with higher rates of service use while in high school: 46.2 percent received mental health services, 46.9 percent had medical services, 74.6 percent were getting speech therapy, and 63.6 percent had a case manager.

We also found that 39.1 percent were completely without all four of these essential supportive services. African-American youths and those from poorer households were at much higher risk for this total lack of services.

I was especially troubled by the low rate of accessing speech therapy. Youths with an ASD are especially vulnerable during this period because of their core challenges with communication and social interaction. Succeeding at a job, at school, or in the community depends on being able to communicate with other people. Speech therapy can help with these issues. But many insurance plans and state programs for vocational support or serving adults with developmental disabilities do not reimburse for speech therapy. Building in speech therapy as an eligible expense in adult-serving programs should be an immediate priority for policy improvement.

Why did I ask these questions? Many people who have, or work with, young people who have special needs already know that services drop off after high school. But there are many people and policy makers who have no clue about how dysfunctional these policies are. This study adds hard facts that can be used to educate and raise awareness about how the current system (mal)functions.

The majority of a typical lifespan is spent in adulthood. Yet the majority of what we know about ASDs is based on a lot of research focusing on very young children. I pursued these questions as part of a broader research mission aimed at understanding how to improve life for people with an ASD and their families across the lifespan. Autism Speaks, the Organization for Autism Research, and the National Institute of Mental Health have generously supported this ambitious agenda. I look forward to giving you more updates in the years ahead as we begin to build a stronger evidence base for helping adults with an ASD and their families have brighter futures.

Here is a link to the Autism Speaks Transition Tool Kit, to serve as a guide to assist families on the journey from adolescence to adulthood.

Family Services provides resources and information. If you have a question, contact the Autism Response Team today. If you’re concerned that your child may be affected with autism or if you’ve received a diagnosis, browse the Tools for Families section, where you’ll find our 100 Day Kit, and the Autism Video Glossary. If you’d like to do a quick search for service providers near you, select Find a Local Resource and browse the Resource Guide.

Advice for Parents of Newly Diagnosed Children

December 20, 2010 21 comments

We are so thankful for the outpouring of advice that has flooded in for us to share with the Autism Speaks Community. Who better to give advice than you all, the people that know best! We have heard from people on the autism spectrum, parents, siblings, teachers, therapists, and beyond. Your advice has been broken down into categories, and we will post accordingly!

Learn to celebrate every achievement, both large and small. –Liz

My advice is this: Loving persistence. There will be many, many times when you are trying so hard to connect with your child and you feel so frustrated because you believe that you are not getting through to them. Don’t stop. Your efforts in communication are not in vain, it is heard, it is cataloged in their mind, even though there is now outward sign of it. Be persistent, there will be moments that you will get feedback from a conversation that took place quite some time back, that’s how it clicked for us, the realization of “wow! He did hear me!” It’s worth every frustrating effort at those moments. Persistence is the key; you’re not being ignored, just not acknowledged… yet. –Thomas

Trust your instincts and your abilities to work with your child. Trust that you know your own child best and while the experts have a lot of training and can offer your child help, you still know your child best and you are going to be the most important therapist in your child’s life.

I wish I’d know that autism does not have to equal pain and suffering for parents and their children. It took me a few years to understand that autism can also equal joy and fun and laughter. –Kyle

Don’t be sad about what your child CAN’T do, really embrace all of the things he/she CAN DO! –Diana

Your child is not a diagnosis; they are always your child, a person, unique as any other child. –Courtney

As the parent of an autistic child, you don’t need to become an expert on Autism; you just need to become an expert on your child.  Watch them, study them, and learn what works and what doesn’t.  Then help those around them to understand. –Anita

It’s not about you. Put everything else, yourself, your pride, denial, any preconceived ideas, any fears of stigma aside and get to work as quickly as possible. Save your child with the same urgency as you would someone who is drowning. And then? Savor every small victory. As they begin to find themselves and you feel like you can breathe again, follow them wherever it is they take you and enjoy, enjoy, enjoy the journey. -Ken

These children have such a challenging time constructively processing feelings and emotions. My son at a young age started getting up at the end of movies and dancing during the credits, usually with what seemed to me like a large amount of emotion. This sparked an idea. When I would observe him having an emotional overload or getting frenzied I would turn on music and let him dance it out. He is 9 now and loves  to dance it out! We just make room and let him go. It is one of the small things that he has expressed to me that really helps him. –Ellen

1) Grief and self-pity are natural feelings when you first get the diagnosis – allow yourself to experience these emotions and forgive yourself for them. Once you get past it – and you will – focus all your energy on becoming the best advocate and teacher for your child.
2) Your child will be unique in the way he/she is motivated, responds, and takes in information – and you know them best. Share these “tips” with everyone who works with your child and work together to build upon your child’s unique qualities and strengths.  Always keep looking forward.
3) Appreciate your child for who he/she is including their unique personalities and perspectives. Accept them and take the time to fully connect with them.  He/she will bring so much joy to your life – more than you can. –Stacey

Establish a bond of trust between you and your child as soon as possible. -Clara

Remember not to get comfortable w/what you know…things are constantly changing & you must be prepared for many different obstacles to overcome!!! I wish you all the luck! & always try to have patience even when it’s so hard! –Brandye

The diagnosis does not change your child; it simply changes how you need to work with your child. Do not be angry at yourself or doctors, it does your child no good. Forget the past and the what ifs, look ahead and set the bar high for everyone, including your child. Keep hope alive!! -Amanda

Don’t fear the label.  The “diagnosis” will help you get the early intervention services that will change your world later on.  Don’t get hung up on the milestones your child is not meeting and find joy in your child each day. –Melissa

 

 

IACC Full Committee Meeting

December 13, 2010 1 comment

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

November 5, 2010 1 comment

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.

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