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ARI Adults with ASD eBulletin

September 11, 2012 

 

  

From the Editor:

Exciting News from AGI: Daily Living Curriculum and Training Achieved!
We are beginning this issue of the eBulletin with some exciting news and information to share about the Autistic Global Initiative (AGI). AGI's initiatives and projects encompass a broad range of activities devoted to improving standards of support and quality of life for adutls on the spectrum. We are thrilled to celebrate the completion of a 500-page curriculum and training, the AGI Daily Living/Residential Curriculum for Direct Support Providers to Adults with Autism. With a Targeted Family Services Grant generously provided by Autism Speaks, our multi-disciplinary team of 15 professionals worked hard to develop this first-of-its-kind training. The goal of the daily living training is to build capacity in residential adult services wherever adults with autism live, including in private homes with their families, in group residential settings and more. You'll be hearing more from AGI in upcoming issues of the eBulletin about this wonderful new resource!

ARI Conference, Orange County, CA: Peer-to-Peer Workshops for People with ASD
October 12-15, the Autism Research Institute hosts its biannual conference in Orange County, California. AGI has developed a full day of workshops devoted to Adult Services, including an all new, half-day peer-to-peer workshop series, "Redefining Our Norm," led by AGI committee members for youth and adults on the spectrum. Cost for registration for individuals with autism is only $19.00 for the full day! For more information, visit www.ariconference.com.

Our Special Issue on Agricultural Communities
And now on to the eBulletin! My co-editors and I are pleased to present our August issue with focus on agricultural communities. Below you will find features by Mari-Anne Kehler, who offers us "Three Myths about Farms and Ranches." You'll also read a story about the now famous Bittersweet Farms of Ohio, which has become an important national model for emerging agricultural communities across the country. Finally, our own co-editor, Chantal Sicile-Kira, gives us a guide for evaluating farmstead and ranch programs to determine whether they are the right fit for you or for an adult on the spectrum you support. And don't miss our new addition to the eBulletin: a critical commentary section, provided this month by Eugene Bensinger of Agricultural Communities for Adults with Autism.

I hope you enjoy the reading and the information! And I hope to see you in October at the ARI Conference! Stop by the AGI table and say hi!

Valerie Paradiz, PhD
Editor-in-Chief
Three Myths about Farms and Ranches
Mari-Anne Kehler

Last March Golden Heart Ranch's FRED (Farms and Ranches Enabling those with Disabilities) Conference hosted hundreds of parents, professionals and special needs adults in Manhattan Beach, California to discuss a looming crisis: quality living options for special needs adults. Experts in the field came to share what they know. With the expectation that we'll have well over 1 million special needs children moving into adulthood in the next decade - 800,000 of those with autism - the need to create opportunities for their future is long overdue.

In the last decade, the impact of autism births has been so profound that most of us were frantically focused on early intervention, research, and creating educational and social programs that would fill the immediate void for those impacted. While we exhausted ourselves with that effort, the numbers kept growing! And poof - now we're looking at an army of grown-ups who deserve the opportunity to live productive and meaningful lives as adults.

Over 80% of adults with special needs never leave their aging parents' homes. Why? Because there aren't adequate options available. There are waiting lists and red tape and bureaucratic discouragements. FRED Conference was born in an effort to make accessible the information needed for action, as well as to build a coalition of those who can advance adult living opportunities efficiently - and quickly.

FRED did indeed spark a flame of excitement. As a result of the conference, many satellite groups are now forming to get smarter about what is needed and band together to create more adult life options. But questions still exist about farms and ranches as a viable model, including some longstanding myths that need debunking.

To read the full article, click here.
Bittersweet Farms:
Unlocking the Potential of Adults with Autism
Vicki Obee, MS

Bittersweet Farms, situated on 80 acres in western Lucas County in Whitehouse, Ohio, was the first farmstead in North America to focus on serving adults with autism and their families.
Bittersweet_eBulletin
Bittersweet Farms opened almost 30 years ago with an emphasis on increasing autonomy and self-reliance, empowering choices, respecting dignity and encouraging community interaction through vocational, residential and supported living programs for adults with autism. Using a team approach, the staff members focus on building communication skills and promoting independence among the 50+ participants. A philosophy of positive behavior support helps to challenge individuals to learn in a nurturing environment, some of whom transition from our young adult program into a vocational program while others participate in activities at their own pace in the therapeutic atmosphere provided by our staff and environment.

Bittersweet's founder, Bettye Ruth Kay, was a special education teacher from Toledo Public Schools who supported adolescents with autism until she opened Bittersweet Farms in 1983. Her programs were so successfully that in 1998, Mrs. Kay was inducted into the Ohio Women's Hall of Fame, and the Ohio bicentennial book lists her as one of the 200 most influential women in Ohio history.

Bittersweet Farms has a long history of gardening, farming and growing food for consumption, dating back to the 15 original residents. Activities in our agricultural communities have expanded over time, including an active garden stand and the sale of produce at local farmers markets. In the past, we also cultivated flowers for drying and for bedding plants to sell. Since 2008, we have shifted our focus to creating micro-businesses.

To read the full article, click here.
A Guide to Exploring Agricultural Communities as Living Options
Chantal Sicile-Kira

After reading the other articles in this eBulletin, you have a better grasp of what farmstead communities have to offer. Assisting an adult, including young adults in transition, in choosing the right living situation - be it a farm, urban setting, group home, or supported living - requires doing research. You also must be sure the adult you're supporting is ready to ask the right questions and is prepared for this major life change.

Below are some general points to consider, followed by questions you or the person you support may want to ask when researching possible farmstead options.

To read the full article, click here.
* * * *    COMMENTARY    * * * *     
HCBS Waivers
Eugene Bensinger
 
The Agricultural Communities for Adults with Autism (ACAA) consortium of existing providers for adults with autism along with organizations in development was formed in 2010 as the direct result of efforts on the part of the U.S. Department of Health and Human Services (HHS) Center for Medicaid Services (CMS) unit to enact choice limiting rules that, among other things, defines the settings where Medicaid Home and Community Based Services (HCBS) waiver funding can be applied. These proposed rules, known as CMS-2249-P2 directly threaten the financial stability (and very existence) of several established agricultural communities and negatively impacts the potential development of others since many of our participants rely on waiver funding streams.

After receiving an unprecedented number of "first round" comments, both positive and negative, CMS altered their original draconian "one size fits all" proposals, but the threat to funding for agricultural communities still remains. A "second round" of comment letters was submitted on July 2nd, including one from ACAA. CMS staff will process these comment letters, some of which are quite technical, in the weeks and months to come. All are available for review on www.regulations.gov (reference CMS-2249-P2).

What's the big deal? ACAA's view, which is shared by many, is that the proposed rules from CMS misinterpret and "cherry pick" the Supreme Court's Olmsted decision on deinstitutionalization in a well intentioned, but ultimately destructive, effort to force all disabled people to live independently, whether or not that is their preference or choice.  Communal, group, or even rural living (like our agricultural communities) is opposed by the rule-makers and their supporters (who are generally not autism focused, rather broad disability advocates) because they don't view our various models as "community based"...though none of us can recall being visited or even asked for any information!

ACAA does not support a return to emphasizing forced placement of disabled Americans at "Dickensian" institutions. Rather, ACAA supports the concept of person centered planning and individual choice (which may involve families and guardians). One size never fits all with autism involved. ACAA is attempting to educate policy makers, legislators, disability advocates, and others that adults with autism can't be made to adhere to rigid notions of what is or isn't "community based" for the purposes of Federal financing. After all, "community" means many different things to different people.

For more on this issue, a good summary can be found at http://www.vor.net/.

About the Author:
Gene Bensinger is a Managing Director in Institutional Sales with Mesirow Financial, a financial services firm headquartered in Chicago. He also serves as a Board Member of Autism Speaks' Chicagoland Chapter and formerly served on the Parent Advisory Committee for the Autism Speaks "Autism Safety Project."
  * * * *    NEWS NOTES    * * * * 
Camphill Hudson Develops Plans for a New Urban Center
Kam Bellamy, BA

Worldwide there are more than 100 Camphill locations dedicated to creating communities where the values of service, sharing, spiritual nourishment, and the recognition of each individual's gifts are upheld. I first joined a Camphill community in North Yorkshire, England in 1996, and later joined Camphill in America in 2005. Traditionally, our environments in the United States have been rural settings, with emphasis on farming and craftwork such as weaving, baking, woodworking and more.

Camphill Hudson, located in Upstate New York, is currently pioneering the first urban Camphill community in this country. Our objective is to establish a program where people of all abilities and ages can work together to provide service to their community. At Camphill Hudson's Center for the Social Arts, participants will work with local schoolchildren to cook and serve community dinners. Also, we will provide meals for our local Habitat for Humanity builders. Art shows featuring works by people with developmental disabilities will be hosted at the Center, and a local theater group will assist us in creating inclusive theater pieces for public performance. Additionally, our program of events will encompass a variety of concerts, lectures and festive community gatherings.

With a generous grant from the Camphill Village Copake Foundation, we are now in negotiation for the purchase of an 8,000 square-foot building in the heart of downtown Hudson, New York. We hope to open our doors in the fall, where we may build community by providing opportunities for volunteerism and creative expression for people of all ages and abilities.

To learn more about Camphill Village in Copake, visit www.camphillvillage.org.

To learn more about Camphill Hudson and the Camphill Center for the Social Arts, visit  www.camphillhudson.org.
Autism Speaks Housing and Supports

This past January, Autism Speaks, the largest science and advocacy organization in the U.S., launched a "Housing and Residential Supports Portal" to link people with autism, their families, and others with critical information and resources on this important topic. Autism Speaks also created a free toolkit for people to use to navigate the confusing maze of housing and residential issues. These resources can be found at the following website:
http://www.autismspeaks.org/family-services/housing-and-residential-supports

As part of their effort, Autism Speaks is shining a national spotlight on innovative housing throughout the country by naming a "Home of the Month".  In keeping with their policy of "choice" driven, practical solutions to the housing crisis facing adults with autism spectrum disorders, Autism Speaks selected as their first "Home of the Month," Farmsteads of New England, an established community for adults with autism and other disabilities located in Hillsborough, New Hampshire (http://www.farmsteads-ne.org/).

Farmsteads of New England (FNE), founded by Deborah DeScenza, M. Ed., is a member of the Agricultural Communities for Adults with Autism (ACAA) consortium (www.ac-aa.org).
ACAA Summit

Agricultural Communities for Adults with Autism (ACAA) held its inaugural Summit earlier this summer on April 3 - 5 at Bittersweet Farms, located just outside Toledo, Ohio.  Agricultural communities represent a terrific option for some adults on the spectrum that prefer the choice of a non-urban, small town community based setting that offers full employment and safe, quality housing.  There are many different models but it helps to visualize a "typical" agricultural community as 3-4 group homes and activity buildings integrated into a working farm setting. The types of the agricultural activities involved are generally low intensity, organic, and not highly mechanized.

The main goals of this first Summit were to organize as a national consortium, share best practices, discuss issues of mutual interest, and develop strategies to assist communities in formation in their quest to become operational service providers to adults with autism in their respective communities.  This last point is critical because the demand for agricultural models far outstrips availability.  Established providers reported to Summit participants that no openings currently exist anywhere in the country and openings are extremely rare.

ACAA is a national consortium comprised of 31 existing provider organizations (and communities in development) that primarily serve adults with autism (as well as other developmental disabilities).  They are generally small footprint and located in small and medium sized communities across the nation.  Many offer both residential and day programs to serve disabled adults from surrounding areas.  ACAA members focus on offering meaningful, agricultural based employment, safe high quality housing, administer quality programming, are woven into the fabric of our small town communities, and enjoy terrific local support from our neighbors and friends.  ACAA's website http://ac-aa.org/ can link you to all of their members throughout the United States and has some very useful information on agricultural community models.

Volume 8  

 

"Reaching out, 

teaching from life experience."   
In This Issue
Three Myths about Farms and Ranches
Bittersweet: Unlocking the Potential of Adults with Autism
A Guide to Exploring Agricultural Communities as Living Options
Commentary: HCBS Waivers
Camphill Hudson Develops Plans for a New Urban Center
Autism Speaks Housing and Supports
ACAA Summit

  

The ARI Adults with ASD eBulletin

Editorial Staff

 

 

Val profile

 

Valerie Paradiz, PhD

Editor-in-Chief

ARI Director of Special Projects  

Director of the Autistic Global Initiative

 

 

 

  

 Janine M. Collins, MTS, MSW

Managing Editor

Participant in the Autistic Global Initiative 

 

 

 

   

  

Chantal Sicile-Kira

Guest Editor

 

 

 

 

We Want to Hear From You!   

 

If you would like to submit an article or a letter to the editor to be considered for publication in the ARI Adults with ASD eBulletin, please email us for submission guidelines at

 

AdultsEBulletin@autism.com 

 

Your feedback and ideas mean a lot to us, as we endeavor to provide you with a balanced resource on the latest events, news and research that concerns adults with autism spectrum condition sand those who

support them.

 

 

 Autistic Global Initiative

Mission

 

To be an agent for assumption-free inclusion of people with autism, providing advisory and consulting services to the Autism Research Institute and other organizations both nationally and globally.

 


Vision    

We balance the work of reaching out for our own needs with the work of educating others, thereby expanding awareness about adult concerns. This work builds bridges among service providers, families and individuals within the autism community. We embrace the diverse perspectives of one another, while incorporating participation across varied modes of expression. In this way, the Autistic Global Initiative serves as a model of the inclusion for which we advocate.  

 

 

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This eBulletin at times will contain commentary from contributor(s) on a topic related to the featured subject of a given issue. ARI, nor AGI as one of its programs, necessarily agrees with or endorses the specific opinion(s) expressed. Commentary is included with the intent of supporting informed choice and decision-making. 


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