Archive
Family Services Office Hours – 09.21.11
Office Hours easily connects families to a wide variety of autism-related resources, including Family Services Tool Kits, and the Autism Speaks Resource Guide, an online national database of autism providers and resources searchable by state and zip code.
Family Services Office Hours is designed to quickly provide access to resources that are available and free to the entire autism community.
The Office Hours sessions are staffed by ART coordinators who are specially trained to connect families affected by autism to resources.
In recognition of National Grandparents Day, on September 11th Autism Speaks is celebrating the grandparent connection in families affected by autism. During the month of September, we are asking grandparents to share your experiences, so that other grandparents across the country can benefit from your knowledge and the road you have traveled.
|
3:03
|
|
|
3:04
|
|
|
3:05
|
|
|
3:05
|
|
|
3:05
|
|
|
3:06
|
|
|
3:06
|
|
|
3:06
|
|
|
3:07
|
|
|
3:07
|
|
|
3:09
|
|
|
3:10
|
|
|
3:10
|
|
|
3:13
|
|
|
3:15
|
|
|
3:15
|
|
|
3:15
|
|
|
3:15
|
|
|
3:20
|
|
|
3:21
|
|
|
3:23
|
|
|
3:25
|
|
|
3:25
|
|
|
3:25
|
|
|
3:26
|
|
|
3:27
|
|
|
3:27
|
|
|
3:28
|
|
|
3:37
|
|
|
3:38
|
|
|
3:38
|
|
|
3:40
|
|
|
3:41
|
|
|
3:44
|
|
|
3:44
|
|
|
3:45
|
|
|
3:46
|
|
|
3:46
|
|
|
3:46
|
|
|
3:56
|
|
|
3:57
|
|
|
3:58
|
|
A Vision for New Jersey’s Autism Community
This post is by Peter Bell is executive vice president for programs and services at Autism Speaks. He oversees the foundation’s government relations and family services activities and also serves as an advisor to the science division. Peter and his wife, Liz, reside in Pennington, New Jersey with their three children. Their eldest son, Tyler, has autism.
As the summer winds down, it is a good time to reflect on the Garden State’s accomplishments in addressing the needs of its citizens with autism and outline my back to school wish list. New Jersey has found itself in a leadership position in serving residents affected by autism spectrum disorder (ASD), by establishing some of the best private and public schools serving students with autism. (Autism is a general term used to describe a group of complex developmental brain disorders known as Pervasive Developmental Disorders.)
Current, forward-thinking policies have New Jersey on track to secure our legacy due to several other factors: the passage and enactment of autism insurance reform legislation in 2009 for evidence-based interventions, continuation and support for a Governor’s Council on Autism Research, establishment of an Office of Autism, passage of First Responder’s Training, and an adult service initiative on housing that will be a catalyst for affordable and appropriate housing options for adults with developmental disabilities. In addition to the formal mechanisms that help to improve our human services infrastructure, there has also been a thoughtful and concentrated effort to embrace the autism community’s challenges by Gov. Chris Christie, the First Lady and other administrative officials.
Notwithstanding all of these important efforts, are they enough to really support the impending needs of people with autism as they transition into adulthood? Today, it is estimated that there are approximately 1.5 million Americans with living with ASD throughout the country, with about 80 percent under the age of 21. According to the Centers for Disease Control, New Jersey’s one-in-94 autism prevalence rate is one of the highest in the nation. Using simple math, we have at least 25,000 fellow New Jersey residents, most of them children, living on the autism spectrum.
Creating a New World
Some people have described the wave of children with autism that will need adult services in the coming years as an impending “tsunami” of required services. But using the tsunami metaphor implies a disaster, and I believe we have the opportunity to create a different world — a world in which adults with autism will be fixing our software, making our keys at Home Depot, carefully tending their gardens at their homes, volunteering at local fundraisers and making New Jersey a great place to live as important contributors to our society and taxpayers. Far too many adults with autism and other developmental disabilities are unemployed, sitting at home and isolated from their peers when they age out of their educational entitlement.
So my back to school wish is to review our intent and our mandate to prepare this group of children for the rest of their lives. Congress, through the transition services mandate of IDEA (Individuals with Disabilities Education Act,) wanted students with special education needs to transition smoothly to meaningful adult outcomes. The act defines transition services as “a coordinated set of activities for a child with a disability that is designed to be a results-oriented process… to facilitate the child’s movement from school to post-school activities, including post-secondary education, vocational education, integrated employment (including supported employment), continuing and adult education, adult services, independent living or community participation…”
Certainly, this is a powerful piece of legislation that directly establishes the broader competencies for passage from adolescence to adulthood. But once the educational entitlement of IDEA ends (at the end of the academic year in which the student turns 21 in New Jersey), there is an even greater need for individuals and families to be educated on the supports afforded to adults with developmental disabilities. Most families are disheartened to know that there are no guarantees for adult services. There is a dearth of programs for adults with specific needs and the current system is beyond capacity.
Securing Funding
One of the most significant challenges is funding for services. Funding can directly impact the ability for a provider to expand services to meet the growing demand and can also affect the ability to recruit and retain direct support professionals. The primary long-term funding source for adults with developmental disabilities is Medicaid’s Home and Community Based Waiver Services (HCBS). Currently, these are being revised to provide a more global waiver for all services and that reform is happening in New Jersey. As services become more self-directed, individuals and families must insure that HCBS waivers are written and implemented to serve adults in those services that best meet their particular needs.
Medicaid waiver services are based on eligibility and the availability of resources, and have limitations in service capacity. According to the state Division of Developmental Disabilities, there are approximately 10,081 individuals enrolled in our Medicaid waiver program and the wait list is over 8,000 (including 4,000 in the “urgent” category). It’s not hard to see the unsustainability in a service system that is unprepared for the number of adults aging out of their educational entitlement. Most families will face a crisis before they receive services under HCBS. It makes perfect sense to coordinate a collaborative system of supports that is defined prior to students aging out of their entitlement.
The Transition Tool Kit
Even though we have defined what type of transition services an adult with autism needs (Autism Speaks recently developed a Transition Tool Kit for adolescents with autism), there are limited services that have training and a specific focus on the needs of this growing population. While we are making great strides in understanding the needs of individuals on the spectrum, there is still a great deal we don’t understand about autism. As our leadership debates reforms in our federal programs, we are comforted to know that our New Jersey delegation in Washington understands the challenges and opportunities that befall the autism community, and is taking action. On September 30, the Combating Autism Act of 2006 (CAA), essential legislation that is central to the federal government’s response to the autism health crisis, will sunset. U.S. Senator Robert Menendez (D-NJ) and Congressman Chris Smith (R-NJ) have both introduced legislation that will reauthorize the CAA by extending this legislation at current funding levels. Longtime champions of the autism community, their continued support on legislation so vital to the needs of people on the autism spectrum is gratifying. The research performed under the CAA has advanced, and will continue to advance our understanding of how to help individuals with autism and their families negotiate their lives.
Government can’t do it all. The private and philanthropic sectors have to do their part. Autism Speaks, the nation’s largest autism science and advocacy organization, has invested in autism research in New Jersey through grants to Rutgers, UMDNJ and Princeton University. In addition, the organization has made community service grants to organizations across the Garden State that are directly delivering services in innovative and replicable ways.
We recognize that government cannot solve all the issues alone and we are poised and ready for the challenge ahead of us by highlighting new and innovative employment opportunities, identifying affordable housing that adds value to neighborhoods, and keeping our eye on the prize that all New Jersey residents have the opportunity to work and thrive in our state. Working collaboratively, the public and private sectors can and must rise to the occasion and meet the needs of New Jersey’s current and future adults with autism.
To read full article, please visit NJ Spotlight.
Family Services Offices Hours – 8/10/11
The Family Services Department at Autism Speaks will now offer online Office Hours each Wednesday, starting August 3, 2011, from 1:00-2:00 p.m. EDT
Office Hours, a new resource available on the web at www.autismspeaks.org will easily connect families to a wide variety of autism-related resources, including Family Services’ Toolkits, and the Autism Speaks Resource Guide, an online national database of autism providers and resources searchable by state and zip code. Family Services’ Office Hours is designed to quickly provide access to resources that are available and free to the entire autism community.
“Having a family member with autism can easily lead to feeling isolated without knowing where to turn. In addition, most families have little free time to search for reliable information about autism, yet they may be in need of timely information. Office Hours offers a quick connection to the Autism Response Team(ART) who can assist you in getting the information you need as quickly as possible,” states Marianne Sullivan, Assistant Director of National Outreach and Resources.
The Office Hours resource is staffed by ART coordinators who are specially trained to connect families affected by autism to resources.
In addition to Office Hours, ART is available by telephone during usual business hours at 888-AUTISM 2 (888-288-4762). You can also reach ART by email at familyservices@autismspeaks.org.
Here is the transcript:
|
12:54
|
|
|
12:54
|
|
|
12:58
|
|
|
12:59
|
|
|
1:00
|
|
|
1:01
|
|
|
1:01
|
|
|
1:01
|
|
|
1:02
|
|
|
1:03
|
The School Community Tool Kit provides information and resources for general education and administrative school staff to support a positive school experience for children with autism.
|
|
1:04
|
|
|
1:05
|
|
|
1:05
|
|
|
1:05
|
|
|
1:06
|
|
|
1:06
|
|
|
1:06
|
|
|
1:07
|
|
|
1:08
|
|
|
1:08
|
|
|
1:09
|
|
|
1:09
|
|
|
1:10
|
|
|
1:10
|
|
|
1:10
|
|
|
1:11
|
|
|
1:11
|
|
|
1:12
|
|
|
1:13
|
|
|
1:13
|
|
|
1:14
|
|
|
1:14
|
|
|
1:14
|
|
|
1:14
|
|
|
1:14
|
|
|
1:15
|
|
|
1:16
|
|
|
1:17
|
|
|
1:18
|
|
|
1:18
|
|
|
1:18
|
|
|
1:19
|
|
|
1:20
|
|
|
1:20
|
|
|
1:20
|
|
|
1:21
|
|
|
1:21
|
|
|
1:22
|
|
|
1:23
|
|
|
1:24
|
|
|
1:24
|
|
|
1:25
|
|
|
1:26
|
|
|
1:28
|
|
|
1:28
|
|
|
1:28
|
|
|
1:29
|
|
|
1:29
|
|
|
1:30
|
|
|
1:31
|
|
|
1:31
|
|
|
1:31
|
|
|
1:32
|
|
|
1:32
|
|
|
1:33
|
|
|
1:34
|
|
|
1:34
|
|
|
1:35
|
|
|
1:35
|
|
|
1:35
|
|
|
1:37
|
|
|
1:37
|
|
|
1:38
|
|
|
1:38
|
|
|
1:38
|
|
|
1:40
|
|
|
1:42
|
|
|
1:42
|
|
|
1:43
|
|
|
1:44
|
|
|
1:44
|
|
|
1:45
|
|
|
1:46
|
|
|
1:46
|
|
|
1:47
|
|
|
1:48
|
|
|
1:48
|
|
|
1:49
|
|
|
1:50
|
|
|
1:50
|
|
|
1:53
|
|
|
1:53
|
|
|
1:54
|
|
|
1:54
|
|
|
1:54
|
|
|
1:55
|
|
|
1:55
|
|
|
1:56
|
|
|
1:56
|
|
|
1:57
|
|
|
1:57
|
|
|
1:58
|
|
|
1:58
|
|
|
1:59
|
|
Autism Speaks Family Services Office Hours 8/3/11
The Family Services Department at Autism Speaks will now offer online Office Hours each Wednesday, starting August 3, 2011, from 1:00-2:30 p.m. EDT
Office Hours, a new resource available on the web at www.autismspeaks.org will easily connect families to a wide variety of autism-related resources, including Family Services’ Toolkits, and the Autism Speaks Resource Guide, an online national database of autism providers and resources searchable by state and zip code. Family Services’ Office Hours is designed to quickly provide access to resources that are available and free to the entire autism community.
“Having a family member with autism can easily lead to feeling isolated without knowing where to turn. In addition, most families have little free time to search for reliable information about autism, yet they may be in need of timely information. Office Hours offers a quick connection to the Autism Response Team(ART) who can assist you in getting the information you need as quickly as possible,” states Marianne Sullivan, Assistant Director of National Outreach and Resources.
The Office Hours resource is staffed by ART coordinators who are specially trained to connect families affected by autism to resources.
In addition to Office Hours, ART is available by telephone during usual business hours at 888-AUTISM 2 (888-288-4762). You can also reach ART by email at familyservices@autismspeaks.org.
Here is the transcript:
|
12:50
|
|
|
12:52
|
|
|
12:53
|
|
|
12:54
|
|
|
12:54
|
|
|
12:55
|
|
|
12:55
|
|
|
12:57
|
|
|
12:57
|
|
|
12:57
|
|
|
12:58
|
|
|
12:58
|
|
|
1:00
|
|
|
1:00
|
|
|
1:00
|
|
|
1:01
|
|
|
1:02
|
|
|
1:03
|
|
|
1:04
|
|
|
1:05
|
|
|
1:06
|
|
|
1:06
|
|
|
1:08
|
|
|
1:08
|
|
|
1:08
|
|
|
1:09
|
|
|
1:10
|
|
|
1:11
|
|
|
1:12
|
|
|
1:12
|
|
|
1:13
|
|
|
1:13
|
|
|
1:14
|
|
|
1:14
|
|
|
1:14
|
|
|
1:16
|
|
|
1:16
|
|
|
1:17
|
|
|
1:17
|
|
|
1:18
|
|
|
1:18
|
|
|
1:19
|
|
|
1:19
|
|
|
1:19
|
|
|
1:20
|
|
|
1:20
|
|
|
1:21
|
|
|
1:21
|
|
|
1:22
|
|
|
1:25
|
|
|
1:25
|
|
|
1:26
|
|
|
1:27
|
|
|
1:29
|
|
|
1:30
|
|
|
1:30
|
|
|
1:31
|
|
|
1:31
|
|
|
1:32
|
|
|
1:32
|
|
|
1:33
|
|
|
1:33
|
|
|
1:33
|
|
|
1:34
|
|
|
1:34
|
|
|
1:35
|
|
|
1:36
|
|
|
1:36
|
|
|
1:37
|
|
|
1:37
|
|
|
1:37
|
|
|
1:38
|
|
|
1:39
|
|
|
1:39
|
|
|
1:40
|
|
|
1:40
|
|
|
1:41
|
|
|
1:41
|
|
|
1:41
|
|
|
1:42
|
|
|
1:42
|
|
|
1:43
|
|
|
1:44
|
|
|
1:44
|
|
|
1:45
|
|
|
1:46
|
|
|
1:46
|
|
|
1:46
|
|
|
1:47
|
|
|
1:48
|
|
|
1:48
|
|
|
1:49
|
|
|
1:49
|
|
|
1:50
|
|
|
1:50
|
|
|
1:50
|
|
|
1:50
|
|
|
1:51
|
|
|
1:51
|
|
|
1:51
|
|
|
1:53
|
|
|
1:53
|
|
|
1:54
|
|
|
1:54
|
|
|
1:55
|
|
|
1:56
|
|
|
1:57
|
|
|
1:58
|
|
|
1:59
|
|
|
1:59
|
|
|
2:00
|
|
|
2:01
|
|
|
2:01
|
|
|
2:02
|
|
|
2:02
|
|
|
2:02
|
|
|
2:03
|
|
|
2:04
|
|
|
2:05
|
|
|
2:05
|
|
|
2:06
|
|
|
2:07
|
|
|
2:08
|
|
|
2:09
|
|
|
2:12
|
|
|
2:15
|
|
|
2:16
|
|
|
2:16
|
|
|
2:16
|
|
|
2:17
|
|
|
2:18
|
|
|
2:18
|
|
|
2:19
|
|
|
2:20
|
|
|
2:20
|
|
|
2:21
|
|
|
2:21
|
|
|
2:21
|
|
|
2:22
|
|
|
2:23
|
|
|
2:24
|
|
|
2:24
|
|
|
2:25
|
|
|
2:26
|
|
|
2:27
|
|
|
2:27
|
|
|
2:28
|
|
|
2:28
|
|
|
2:28
|
|
|
2:28
|
|
|
2:29
|
|
|
2:29
|
|
|
2:30
|
|
|
2:31
|
|
|
2:31
|
|
|
2:32
|
|
Moving Out
This is a guest post by Pat Kemp, Executive Vice President – Marketing, Corporate Relations and Development at Autism Speaks and the father of a young man with autism.
Tears were pouring down my cheeks as I was typing my 5 sentence letter to my son explaining to him that he was being asked to leave of my house and would not be living with me anymore. See, Ryan is not just any child; he is a special needs child who functions on the low end of the autism spectrum. He is nonverbal and very vulnerable. However, according to my attorney, Ryan could not live me after he was 18 if I wanted him to be eligible for housing and other subsidies. It was time for him to learn how to ‘live on his own’. How sad, yet I wrote and signed and dated it because it was how the ‘system’ worked. I still needed him protected in a safe and secure environment. So we went house hunting.
Ryan’s first home after ‘declaring his independence’ was a house that I was able to rent in his name at OATS (Offering Alternative Therapies with Smiles). OATS is a 55 acre horse farm in northern Oakland County that provides horseback riding therapies for individuals with special needs. Ryan had been a participant in the program there since it opened up in the late 90’s, so he was familiar with the surroundings. Plus, the entire property was fenced in so I at least could feel that he was safe. This worked out for a couple of years until I found a house to rent on a lake (Ryan loves the water) in Davisburg. The landlord has a daughter with Aspergers and lives next door, so he understands the situation.
I moved Ryan into his new home in Davisburg and put a sign on the front door that says “Ryan’s Party Place”. It is his private bachelor pad with athlete pictures on the walls, a pinball machine, an air hockey machine, etc. He visits my place once or twice a week and we stay in contact so I know he is safe and he knows I care about him. We call it that he needs some ‘Dad time’. I also need my ‘Ryan time.’
The next challenge was to get Ryan a job and teach him how to communicate better on his own. First things first, time to get a job. Ryan loves the outdoors. He and I have volunteered for many years to feed the horses and clean the stalls at OATS on Sunday mornings. I knew he had the skills to do this job, but OATS is a 501(c) 3 charity so I didn’t want to ask for Ryan to get a paying job there. After many months we secured a janitorial services job 8 hours/week at The Palace of Auburn Hills. Since Ryan loves the Pistons, I thought it would be a natural for him. So far, so good. He has his good days and his not so good days. He gets to wear a special shirt with his name badge on it which he likes a lot. He also gets to eat lunch at the employee cafeteria which he really enjoys.
Communication is a longer term project. For Ryan to really function independently, his communication skills need to improve exponentially. I bought him an iPad and we are programming that now. We have met with communication specialists and have ideas that we want to work on. Yet, like many children with special needs, Ryan inevitably surfaces another problem that needs to be addressed. Most recently it was an incredible need for O.T. which we are working on with specialists. Who knows what tomorrow will bring. Hopefully sunshine. Ryan likes sunshine. One thing I learned to accept a long time ago is that autism is like running a marathon, it isn’t a sprint. Patience, focus, persistence and advocacy are the keys to providing our children a brighter future than today. There are never ending needs for services for these individuals. We, as parents and advocates of individuals with special needs, need to stick together and fight for their rights. What I have also learned is that it is not important whether Ryan lives with me or not. I wasn’t giving him enough credit that he was ready to live on his own. However, I will never forget how difficult it was for me to sign that letter 9 years ago. My tears are still wet on my cheeks, but at the end of the day, I think I made the right decision.
Janet Grillo Talks ‘Fly Away’
Janet Grillo, an Emmy Award winning producer, an Award winning writer and director, and a former Studio Executive, sits down to discuss her film, FLY AWAY.
FLY AWAY’s narration of teenager with autism is relatable for many families. The Autism Speaks Transition Tool Kit was created to serve as a guide to assist families on the journey from adolescence to adulthood. For more information, visit here.
Here is the theatrical trailor
“FLY AWAY is now available nationally on DVD for sale/rental/streaming, or on VOD.” For info contact http://www.flyawaymovie.com, 10% of proceeds benefit Autism Speaks.
New Video DVD: http://www.newvideo.com/flatiron-film-company/fly-away/
Netflix: http://movies.netflix.com/WiMovie/Fly_Away/70170708?trkid=2361637#height601
iTunes: http://www.iTunes.com/Movies/FlyAway2011
Amazon: http://goo.gl/1uUo7
TimeWarner Video on Demand:http://goo.gl/aykS2
An Employment Story
BJ is a young man who is affiliated with Ken’s Krew, Inc., a nonprofit corporation, is to provide vocational training and job placement services to young adults with intellectual and learning disabilities who are transitioning into the workforce.
My name is B.J. Ivey I am 29 years old and have been with the home depot and Ken’s Krew for 9 years you can tell how old I am by how many years I have been working at the home depot. I was first introduced to Ken’s Krew back in 2001-2002 when it was still called Ken’s Kids I was at CAT Pickering trying to take some more machine shop training that was the tech area that I was in when I was in 9th grade. But it didn’t work out the teacher quit 5 days before the start of school. So I tried carpentry but I wasn’t good so then I went to electronics and that fit me well as I was doing my extra learning I tried to get help with going to college and there was one in Vermont that was geared towards kids with learning disabilities but they said that I didn’t have the kind they mostly teach with which was dyslexia. I didn’t know what to do so one of the teachers found Ken’s Krew and called them up and that’s how I met Debbie I am working at the Frazer home depot as the pro loader meaning I help out with the contractors mostly loading cement, drywall, and lumber. I was chosen as a co captain for the project at a school for kids like me it felt good to be a leader and while I was there I saw my old boss our project was to build a deer fence around the green house we put in posts filled them with cement and then wrapped deer block ours was probably the longest project because while we were working almost everyone else was done and yes I had fun working with everyone. While I am working at the home depot I hope to try and become an anime writer I have some stories written out and I want to find a producer that will help me I am saying this because when I went to a school for the disabled there was a kid who owned his own business I was surprised by that thinking his type of disability would hold him back. I am enjoying working at the home depot and I might be there for a while longer.
Communicating Through Cupcakes
This is by Lena Rivkin, M.F.A., is an artist and graphologist living in Los Angeles.
Can you count the stars? Impossible! It’s just so comforting to look up and see that they are there, that you can count on them coming out every time. That pretty much describes the way I feel when I’m hanging out with Phillip at his house…when we’re baking cupcakes together. I look up at his face flushed with joy and watch as he adds the final touches – 
sprinkles, maybe – to the icing of his latest creation. In a fast-paced world, baking with Phillip is a quiet moment in time.
For those of you who read my previous article about him, you’ll remember that my older brother Phillip, who is severely autistic and nonverbal, loves to stitch needlepoint. I create the designs and Phillip is the craftsman. Our collaboration provides a special connection between our worlds – without words. He has been living for 29 years in a group home administered by New Horizons (a non-profit organization dedicated to helping adults with developmental disabilities) in North Hills, California, and attends a day program at Tierra del Sol in Sunland.
Since Phillip always exhibits a marked interest in repetitive behavior, for years we have engaged in needlepoint projects together at my house. And lately, we have been hanging out at the place where he lives to bake together. We particularly enjoy baking cupcakes. Historically, a recipe for a small cake first occurred in the U.S. in a cookbook appropriately titled American Cookery. It was written by Amelia Simms in 1796. However, the actual word cupcake (because it’s the size of a teacup) was first used in 1828 by Eliza Leslie inSeventy-five Receipts for Pastry, Cakes, and Sweetmeats. When Phillip and I bake cupcakes in 2011, we are entering into an innovative space where we can create an edible form of art.
First we line each section of the muffin pan with crinkly, colorful paper cups, a simple, repetitive process that Phillip
enjoys. Then we make a host of cupcakes, ranging from…oh, red velvet cupcakes with vanilla cream cheese frosting or pineapple-carrot, or dark chocolate with raspberry frosting. (Did you know that the height of the frosting should be about one-third the height of the cupcake? Sometimes, when we are feeling really daring, we make the frosting one half of the whole. It’s fun.) And we make strawberry and chocolate-almond, lemon-fudge, or orange-spice cupcakes too.
The ingredients for cupcakes are all pretty much the same: butter, sugar, egg, and flour just like a standard layer cake. Yet what we end up with is a creation. For my birthday, we felt really expansive and made a full-size chocolate cake. We design our cupcakes differently every week, even though we start with a very ordinary cake mix. Sometimes we dip dried or fresh fruit into chocolate. The visual effects are very important, just as they are when Phillip is keeping busy translating my designs into his meticulously crafted needlepoint. In fact, while the cupcakes are baking, he works on his needlepoint.
As with the needlepoint, there is a therapeutic process at work when we are baking. It involves eye and hand coordination as well as the joy of creation – and a sense of place. Although I still take Phillip to my house and other places (museums, parks, stores, and visits to friends), when we make cupcakes, we are enjoying being together in a consistent way in the place where he lives – his house. I feel that I am truly participating in his daily life with these home visits and learning about his activities, as well as the chores that are required of him. I particularly enjoy getting to know the outstanding staff – Samir Qureshi (the House Manager, who is also an excellent cook) and another member of the staff, Jamie Page, who are both an essential part of our weekly baking activity with their supportive and positive help with the baking. I am also becoming closer to Phillip’s friends. Everybody loves eating the cupcakes, so there is plenty of joy to pass around! Because the cupcakes bake quickly, while a tantalizing aroma fills the house, we don’t have to wait long to enjoy them.
Cupcakes have attracted wide interest today. In fact, cupcake-making has become a competitive “sport.” There are actually “cupcake wars” sponsored by food companies where people vie on television to win big prizes for the “best” cupcake recipe. But Phillip and I, his friends and the supportive staff don’t want to enter our cupcake recipes into showcase competition. We simply love the warmth of making them and sharing them in friendship together.
“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 editors@autismspeaks.org. 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.
Finding Meaningful Work in Difficult Times
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.
Autism Speaks Live Chat with Rodney Peete
|
6:54
|
|
|
6:55
|
|
|
6:55
|
|
|
6:56
|
|
|
6:56
|
|
|
6:56
|
|
|
6:57
|
|
|
6:57
|
|
|
6:58
|
|
|
6:58
|
|
|
6:58
|
|
|
6:58
|
|
|
6:59
|
|
|
6:59
|
|
|
6:59
|
|
|
7:00
|
|
|
7:00
|
|
|
7:01
|
|
|
7:01
|
|
|
7:01
|
|
|
7:01
|
|
|
7:01
|
|
|
7:03
|
|
|
7:04
|
|
|
7:05
|
|
|
7:05
|
|
|
7:05
|
|
|
7:06
|
|
|
7:06
|
|
|
7:06
|
|
|
7:07
|
|
|
7:08
|
|
|
7:08
|
|
|
7:08
|
|
|
7:09
|
|
|
7:09
|
|
|
7:09
|
|
|
7:10
|
|
|
7:10
|
|
|
7:11
|
|
|
7:11
|
|
|
7:12
|
|
|
7:12
|
|
|
7:12
|
|
|
7:14
|
|
|
7:14
|
|
|
7:14
|
|
|
7:15
|
|
|
7:15
|
|
|
7:16
|
|
|
7:17
|
|
|
7:18
|
|
|
7:18
|
|
|
7:19
|
|
|
7:19
|
|
|
7:19
|
|
|
7:19
|
|
|
7:20
|
|
|
7:20
|
|
|
7:20
|
|
|
7:21
|
|
|
7:21
|
|
|
7:21
|
|
|
7:22
|
|
|
7:22
|
|
|
7:22
|
|
|
7:23
|
|
|
7:23
|
|
|
7:23
|
|
|
7:23
|
|
|
7:23
|
|
|
7:26
|
|
|
7:26
|
|
|
7:27
|
|
|
7:27
|
|
|
7:27
|
|
|
7:27
|
|
|
7:27
|
|
|
7:28
|
|
|
7:28
|
|
|
7:28
|
|
|
7:29
|
|
|
7:30
|
|
|
7:30
|
|
|
7:31
|
|
|
7:31
|
|
|
7:32
|
|
|
7:33
|
|
|
7:34
|
|
|
7:34
|
|
|
7:34
|
|
|
7:35
|
|
|
7:35
|
|
|
7:35
|
|
|
7:35
|
|
|
7:36
|
|
|
7:36
|
|
|
7:37
|
|
|
7:37
|
|
|
7:37
|
|
|
7:38
|
|
|
7:38
|
|
|
7:38
|
|
|
7:38
|
|
|
7:39
|
|
|
7:39
|
|
|
7:40
|
|
|
7:40
|
|
|
7:40
|
|
|
7:40
|
|
|
7:41
|
|
|
7:41
|
|
|
7:41
|
|
|
7:42
|
|
|
7:42
|
|
|
7:42
|
|
|
7:43
|
|
|
7:43
|
|
|
7:43
|
|
|
7:44
|
|
|
7:44
|
|
|
7:46
|
|
|
7:46
|
|
|
7:47
|
|
|
7:47
|
|
|
7:47
|
|
|
7:47
|
|
|
7:48
|
|
|
7:48
|
|
|
7:48
|
|
|
7:48
|
|
|
7:48
|
|
|
7:49
|
|
|
7:49
|
|
|
7:49
|
|
|
7:50
|
|
|
7:50
|
|
|
7:50
|
|
|
7:51
|
|
|
7:51
|
|
|
7:52
|
|
|
7:53
|
|
|
7:53
|
|
|
7:54
|
|
|
7:54
|
|
|
7:54
|
|
|
7:54
|
|
|
7:54
|
|
|
7:55
|
|
|
7:55
|
|
|
7:55
|
|
|
7:56
|
|
|
7:56
|
|
|
7:56
|
|
|
7:57
|
|
|
7:57
|
|
|
7:57
|
|
|
7:58
|
|
|
7:58
|
|
|
7:58
|
|
