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ARI Adults with ASD eBulletin

November 18, 2014    

 

  

From the Editor:

 

The editorial staff is very happy to bring you what we hope is a timely publication of the eBulletin. The current issue focuses on specific considerations for those thinking about or in the midst of post-secondary transition planning.

 

Betty Lehman, Disability Advisor, Lehman Disability Planning, LLC provides an overview of "Life Care Planning," a whole family, team-based approach to comprehensive (financial, legal, social support) planning for future needs. Nancy Kiehl, Educator, Boulder Valley School District outlines Colorado's School to Work Alliance Program (SWAP), a model of cooperative employment supports linking SWAP's career exploration and employment planning services and supports with the local school districts and the Division of Vocational Rehabilitation to facilitate school-to-work transitions for secondary and post-secondary youth. Cathy Dionne, Director of Programs, Autism Society of Maine (ASM) shares her personal story of navigating post-secondary transition with her son Ben and offers insights for other parents. Cathy also has provided a link to an ASM-produced video (of her son Ben) that illustrates a modified Vocational Rehabilitation services interview that accommodates Ben's use of AAC.

 

As always, we are grateful to our contributors and hope that you find the information useful. Remember to check out the News Notes for additional resources. 


Jay

 

J. Richardson Collins, MTS, MSW

Managing Editor

Protecting Your

Family's Future

Betty Lehman, Disability Advisor, Lehman Disability Planning, LLC

 

Life Care Planning is intentional planning focusing on the care needs, financial needs and legal needs of the whole family. Like an Individualized Plan (IP), a life care plan is created by a team of professionals who understand how to design your plan to support the needs of your entire family, throughout their lifetimes. This means making sure that there is enough money, and that the money is controlled in such a way that every family member has the opportunity to have the best quality of life possible given their unique circumstances. The Life Care Plan is usually centered on funding sources such as private assets, insurance and public benefit programs.

 

One way to envision what is required from a thorough life care plan is to ask the following questions, "If my spouse and I perished in a common accident last night, would everything be OK?"; "Would my family know what to do?"; "Would my family know how much I loved them?"; "Would my family know Johnny's routine or how best to comfort Becky?"; "Would my family have enough money?"; 

"How much money does my family need?"; "Would my family be legally protected?"

 

Read more about Life Care Planning.

SWAP: A School - VR - and Employment Supports Collaboration

Nancy Kiehl

 

Ben J. is an articulate, intelligent and friendly twenty-one year old with a dual diagnosis of ADHD and autism that lives and works in Boulder County, Colorado. He is employed as a dishwasher at a popular Indian restaurant. Since August 2013, Ben has received support in obtaining and maintaining employment from Jason Hewes, who is the Coordinator of the School to Work Alliance Program (SWAP) with the Boulder Valley School District. Initially, Ben and Jason met weekly. First, they completed assessments of Ben's vocational skills and interests. Next, they spent some time on career exploration. Afterward, Jason provided Ben with short-term instruction in skills such as resume writing, completing job applications and interview practice. Social and soft skills in the workplace were presented as well. Ben has learned appropriate job seeking and employment retention skills that can be used throughout his lifetime.

 

Ben and Jason

 

According to Ben, "It was helpful to learn how to write a good resume. Learning interviewing skills and mock interview practice taught me what to expect and how best to present myself. The job leads Jason provided were great. Most helpful of all was during a previous work experience. Jason was able to speak with my employer on my behalf." Ben got connected to the restaurant where he now works through a family friend. He says, "Because my employers have a child with autism, they are understanding of my disability, which has not always been the case in my experience."

Learn more about SWAP. 

Video Illustrates

Adapted VR Interview

Produced by

The Autism Society of Maine (ASM)

 

The Autism Society of Maine (ASM) recently created a video to use in presentations concerning the post-secondary transition planning process. The video addresses the issue of interviews for Vocational Rehabilitation services for those who do not use speech to communicate. It features Ben, a 20-year old with autism answering questions using a speech-generating device.

Ben at the Career Center for His Interview

Ben is the son of Cathy Dionne, Director of Programs for the ASM and creator of the video. Cathy became involved with the ASM in 1996, first as a member of the Board of Directors and then, as the Board's Vice-President. Through that early experience, she realized she wanted to do more for Maine families with a family member on the autism spectrum. She became committed to making a difference by becoming a staff member and having direct contact with families every day. She has been with the ASM for 17 years, currently as the Director of Programs and Administration. Over the past 17 years, she has been instrumental in expanding the resources and programs that the ASM provides for both children and adults with autism. The summer camp program she helped initiate is nationally recognized.

The eBulletin staff is grateful to Cathy, Ben and the ASM staff for sharing this video project with us. You can read more about Cathy's experience with Ben's post-secondary transition in the personal experience section below.

The Autism Society of Maine
View the Video
*** PERSONAL EXPERIENCE ***

Graduation Day

Cathy E. Dionne

 

From the Fall 2014 Maine Autism Connections, a newsletter of the Autism Society of Maine (ASM), and reprinted with permission from the author.

 

On June 27, 2014, my son graduated from high school. I thought this day would never come. Some may think "most families' children graduate from high school". The exception to this is the family of a child with special health care needs. For us it was my son Ben who has autism. The thought of his graduating seemed more like a dream.

 

When Ben was diagnosed at 18 months old, I wasn't thinking very far into the future. Graduation was the last thing on my mind. Between speech, OT therapies, and specialized preschool, I could hardly keep up with the rest of the family and all their schedules. But as time went on, Ben grew and transitioned from one grade to another. The word "graduation" would come up from time to time. It would be a brief conversation mostly about meeting a requirement before he graduated. I would sit there and listen like most parents and nod my head with agreement to whatever topic was being discussed.

 

When he entered high school (9th grade) things became more urgent or at least it felt that way. I began to realize that sometimes it took Ben 1 to 2 years to master something, and now that he was in high school, time seemed limited. What a feeling from just mentioning graduation in an IEP to now

having to start thinking about his future!

 

Read the rest of Cathy and Ben's story.  
**** NEWS NOTES ****

The Journey to Life After High School


A guide to post-secondary transition produced by AbilityPath.org, a project of the nonprofit Community Gatepath
.

Designed as a roadmap, the guide specifically is aimed at supporting parents with children in the transition process. The road map discusses IEPs and how to prepare and provides information about college, employment, health care and legal considerations. Information provided incorporates stories, checklists and other resources.

Taking Charge of My Health: Partners in Health Transition

 

The website provides information and resources designed to guide teens and young adults with intellectual and developmental disabilities (I/DD), family members and caregivers to achieve successful transition from pediatric to adult health care. It focuses on the transition period from 14 to 28 years of age when people have questions about health transition and may experience difficulty finding answers. The content and focus of the information and resources draws on transition experiences of teens and young adults with I/DD, family members and caregivers, and it is based on a self determination framework. (As announced on the AUCD Website, July 13, 2014)

 

The information is presented within categories for teens and young adults and for families. Within each category, content addresses nine key areas: transition plans, timelines and checklists; health goals in IEPs and community plans; health records and health summaries; moving to adult care; medical decision making; health insurance; self-advocacy in health care; staying healthy; taking charge of care. Each area includes basic information and links to additional resources including guides, tips, checklists and explanatory video.

Smart Steps 4 Me and Smart Steps Mobile

   

Account-based tool for assisting decision making; designed specifically to assist those with ASD and with utility for those with other disabilities that impact executive function. The app can be downloaded for free from the app store in iTunes and an account set up at Smart Steps 4 Me. The app uses a decision tree model, resulting in acknowledgement of determining a successful solution or a prompt to "call for backup." There are three levels of accounts available (for purchase via the website):

·      Free - the decision tree feature and prompt to log out to call for help

·      On My Own - features of the free level plus emergency contacts can be stored and accessed within the app

·      24/7 Response Center - features of levels 1 and 2 plus access to a call center with trained support staff (Notes can be added to a profile for access and use by staff to provide more personalized support.)

Tutorials to facilitate use and a dashboard function to display performance using a completed decision trees feature are included with all accounts. At this time, the website/app does not include an option to create personalized decision trees.

iPresentWell Now Available 

 

New iPad app available from AutismSees. The app allows users to practice open-ended dialogue, speech delivery, and speech timing with a virtual audience. It also can be used to train for job contacts and interviews. Options include speech/presentation rehearsal by importing existing text from Dropbox (via a sync feature to Dropbox) or writing a speech within the app. Users also can opt to practice responding to real-life interview questions available within the app. Embedded features include the option to set (in seconds or minutes) a visual cue that will prompt for looking up during a presentation and the ability to add a picture to look at or use a default photo of eyes staring back at the reader. A record feature is available, allowing videos of rehearsals/responses to be shared with friends, family, employers, or speech and behavioral therapists. Stored videos remain accessible from within the app. Available from the app store in iTunes.
Book Announcement: 
The Autism Spectrum, Sexuality and the Law: What every parent and professional needs to know

 

The complex world of sex and appropriate sexual behavior can be extremely challenging for people with autism spectrum disorder (ASD). Issues are too often shrouded in secrecy and shame and, without guidance, many individuals can find themselves in vulnerable situations.

Based on Nick Dubin's own experience within the American crimminal (sic) justice system, and drawing on the extensive knowledge of international autism experts Dr. Tony Attwood and Dr. Isabelle Hénault, the bookaddresses the complex and often hidden issues surrounding the autism spectrum, sexuality and the law. This ground-breaking, important book examines how the ASD profile typically affects sexuality and how sexual development differs between the general population and those with ASD.It offers an honest and candid account of the courageous story of one remarkable young man, bewildered by his own entanglements, and explains the legalities of sexual behavior, how laws differ from country to country, and the possibility for adjustment of existing laws as they are applied to the ASD population.

 

It is an invaluable addition
to the shelves of parents of children with ASD, mental health and legal professionals, teachers, caregivers and other professionals working with individuals on the spectrum. (Excerpted from Jessica Kingsley press release, August 29, 2014)

Available from Jessica Kingsley Publishers

Best Colleges.com Offers An Online College Planning and Academic Resources Guide for Students with Disabilities


BestColleges.com is an online resource dedicated to providing information to facilitate the college selection process. Sections include rankings, college database, resources, financial aid and the college advisor. The guide
is part of the resources section and addresses a wide range of topics of importance to students with disabilities. Section 504 is explained along with information about requesting accommodations and filing grievances. Specific information is provided regarding considerations while applying (such as housing) and tasks to address (including coordination of accommodations) prior to course enrollment. Each topic area is supported with links to additional information and further resources by disability category, including autism, are available at the end of the guide.

Research Project Requests Survey Participants

 

University of Wisconsin-Madison is conducting IRB-approved nationwide research (Study ID: 2014-0075-CP002) on identity for adults with Autism Spectrum Disorder (ASD). Individuals with ASD are being asked to complete a brief - taking 15 - 20 minutes - online survey about their experiences and attitudes as adults on the spectrum. The research is indented to help identify adults' perceptions of themselves and their experiences, including how they view the diagnosis.

 

To participate in this study, you need to:

·  Be age 18 or older

·  Have a diagnosis or identify with a diagnosis of Asperger's Syndrome, Autistic Disorder or PDD-NOS

·  Be able to complete an online survey

Participation in this study includes a chance to win a $100 Visa Gift Card.

 

Click here to view an informational flyer. 

 

survey
Complete the Survey

Videos Bring to Life the Promise of the Olmstead Decision

 

Two new companion videos, The Promise of Olmstead: 15 Years Later and Voices from the Olmstead Decision, are now posted to the ADA.gov website. The first video is a tribute from the departments of Justice and Health and Human Services to the dedicated and brave individuals who have worked to make the Olmstead Decision  a way of life. It opens with a statement from Secretary of Labor Tom Perez and features stories from advocates. In the closing statement, Associate Attorney General Tony West highlights the Civil Rights Division's Olmstead enforcement efforts, as well as its ongoing commitment to ensuring that people with disabilities can live and participate in, and contribute to, our communities. Voices from the Olmstead Decision shares stories from individuals with disabilities, their family members, and other stakeholders whose lives have been positively impacted by Olmstead's promise of community integration. (As announced by the Administration for Community Living (ACL), September 4, 2014) 

 


Each is available in an accessible version with audio descriptions and closed captioning.

Volume 16      

 

"Reaching out, 

teaching from life experience."
In This Issue
 

  

The ARI Adults with ASD eBulletin

Editorial Staff

 

 

Valerie Paradiz, PhD

Editor-in-Chief

ARI Director of Special Projects

Director of the Autistic Global Initiative

 

   

  

 J. Richardson Collins,

MTS, MSW

Managing Editor

Participant in the

Autistic Global Initiative 

 

   

   

  

Chloe Rothschild  

Editor in Training   

 

 

 

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 on the autism spectrum and those who support them.

 

  

 Autistic Global Initiative

Mission

 

To foster the development of adults on the autism spectrum and those who work with and for them.

 

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. 


Autism Research Institute