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ARI Adults with ASD eBulletin

November 19, 2013     

   

  

From the Editor:

The AGI Online Residential/Daily Living Course for DSPs  
In this issue of the eBulletin, we bring you a series of articles that provide an inside view of the AGI Online Residential/Daily Living Course for direct support providers to adults with autism. The online course launched in September of this year and is the culmination of a national collaboration among curriculum and technology specialists that was funded by an Autism Speaks Family Services Grant.

The online course is interactive and builds community. Here learners share comments on motor planning and movement differences. For a full view of the image, click here.

The September course was so popular that our online education partner, the Houlton Institute, decided that we should add another offering immediately. Moving forward, the daily living support course will be available on a continuous basis, with the next section opening in January 2014.

 

This issue features the perspectives of participants in the course, JameyLee Nuss and Matthew Murphy, and how they benefited from learning evidence-based practices to support adults with autism at home. JameyLee and Matt are direct support staff for Jeremy Sicile-Kira, one of AGI's young leaders. As Jeremy's new staff learned about strategies to support him, Jeremy documented his thoughts and perceptions on what he needs from his staff. Together, their stories provide a wonderful case study on how the 12-week course works, what it teaches and the benefits it offers.

 

To learn more about the course and upcoming sessions, visit http://houltoninstitute.com/programs/agi-residential-daily-living-support-course/.
 

In closing, I want to thank my co-editor of this issue of the eBulletin, Chloe Rothschild, another one of our bright and hard-working young leaders at AGI! THANKS CHLOE!

 

Val

 

Valerie Paradiz, PhD  

Editor-in-Chief

Support Means

Knowing Who I Am

Jeremy Sicile-Kira

 

kira Our contributor, Jeremy Sicile-Kira, is the focus of this issue of the eBulletin. Jeremy received a grant from the Autism Research Institute this year to document his experiences with his new in-home support staff, JameyLee Nuss and Matthew Murphy, while they participated in the AGI Online Residential/Daily Living Course. Jeremy shares his perspectives regarding direct support and his long-term plan to live in his own home.

 

Person-Centered Planning and Self-Advocacy

 

Person-Centered Planning (PCP) means that the person who needs supports is at the center of any planning about his or her life. Justly, the person must be able to give his opinion even if it is just to point to "yes" or "no". This PCP is important to having a real life. Self-advocacy means being able to really advocate for what you want in life and be ready to let people know what your wants and needs are. When you need support staff for daily life, it is necessary to kindly be able to make them know what is important to you and to your life.

To read the full article and learn about Jeremy's approach to working with support staff, click here.

JameyLee, Jeremy, and his mom Chantal give jet skiing a try. 

Evidence-Based Practice Makes Me a Better DSP

Matthew Murphy

 

The AGI Online Residential/Daily Living Course contains an incredible amount of information about the nature of autism and the many evidence-based supports that can be implemented to meet an individual's needs. My involvement in this course is my first formal education about the nature of autism. I have spent a fair amount of time supporting people with autism in the past, but I have never really known much about the characteristics of autism and the specific supports that have been developed to support them. This increased understanding has led to very significant changes in how I support Jeremy.

 

Matt supports Jeremy with regulation by using a visual scale.

 

To read the full article and learn how Matthew supports sensory and motor differences, including the development of new strategies, click here

Supporting Jeremy at Home and in the Community

JameyLee Nuss

 

Communication Supports

 

Spend a day with Jeremy Sicile-Kira and you'll meet the most amazing young man who, despite his severe autism, just wants to be like everybody else. Jeremy is 24 years old and non-verbal. He requires round the clock support, and I am one of his support staff. Jeremy invited me to take the AGI Online Residential/Daily Living Course, so that I could learn more strategies to support him better. I completed the 12-week certificate course in early November. It's amazing now to see that I can actually implement what I've learned in class into daily activities with Jeremy. The hands-on implementation of the learning modules is imperative, and I share some examples below.

JameyLee reviews the daily schedule with Jeremy.

To read the full article and learn how JameyLee fosters communication to maximize choice, support interests and reduce anxiety, click here.
**** NEWS NOTES ****
What is the Research Saying about Autism and Young Adulthood?  

Recent research articles point out concerns and suggest promising practices for improving outcomes post-high school.
 
Prevalence and correlates of postsecondary residential status among young adults with an autism spectrum disorder

Anderson KA, Shattuck PT, Cooper BP, Roux AM, Wagner M. Autism: The International Journal of Research and Practice.  First published on August 30, 2013 as doi: 10.1177/1362361313481860.

 

Abstract

This study examined the prevalence and correlates of three living arrangements (with a parent or guardian, independently or with a roommate, or in a supervised setting) among a nationally representative sample of postsecondary young adults with an autism spectrum disorder. We assessed living arrangements since leaving high school. Compared with young adults with other disability types (learning disabilities, intellectual disabilities, or emotional disturbances), those with autism spectrum disorder were more likely to have lived with a parent or guardian and least likely ever to have lived independently since leaving high school. Members of the autism spectrum disorder group were less likely to have ever lived elsewhere and more likely to live under supervision since leaving high school compared to persons with emotional disturbances and learning disabilities. Group differences persisted after controlling for functional ability and demographic characteristics. Correlates of residential independence included being White, having better conversation ability and functional skills,and having a higher household income. Further research is needed to investigate how these residential trends relate to the quality of life among families and young adults.

Postsecondary employment experiences among young adults with an autism spectrum disorder

Roux AM, Shattuck PT, Cooper BP, Anderson KA, Wagner M, Narendorf SC. Journal of the American Academy of Child & Adolescent Psychiatry. 2013 Sep; 52(9): 931-9.

 

Abstract

OBJECTIVE: We examined postsecondary employment experiences of young adults with an autism spectrum disorder (ASD) and compared these outcomes with those of young adults with different disabilities.

METHOD: Data were from Wave 5 of the National Longitudinal Transition Study-2 (NLTS2), a nationally representative survey of young adults who had received special education services during high school. We examined the prevalence of ever having had, and currently having, a paid job at 21 to 25 years of age. We analyzed rates of full-time employment, wages earned, number of jobs held since high school, and job types.

RESULTS: Approximately one-half (53.4%) of young adults with an ASD had ever worked for pay outside the home since leaving high school, the lowest rate among disability groups. Young adults with an ASD earned an average of $8.10 per hour, significantly lower than average wages for young adults in the comparison groups, and held jobs that clustered within fewer occupational types. Odds of ever having had a paid job were higher for those who were older, from higher-income households, and with better conversational abilities or functional skills.

CONCLUSIONS: Findings of worse employment outcomes for young adults with an ASD suggest that this population is experiencing particular difficulty in successfully transitioning into employment. Research is needed to determine strategies for improving outcomes as these young adults transition into adulthood.

 

To read the press release concerning the above two studies, go to http://drexel.edu/now/news-media/releases/archive/2013/September/Autism-Spectrum-Young-Adult-Transition-Studies/.  
Outcomes of a Family-Centered Transition Process for Students With Autism Spectrum Disorders

David Hagner, PhD, Alan Kurtz, MEd, Heidi Cloutier, MSW, Caroline Arakelian, MEd, Debra L. Brucker, PhD, and Janet May, MEd. Focus on Autism and Other Developmental Disabilities. 27(1): 42-50.

 

Abstract

A three-component intervention was implemented with 47 youth with autism spectrum disorders (ASD) as they transitioned from high school to adult life. The youth, ages 16 to 19 years, were randomly assigned to a Year 1 group or a Year 2 group. Participants in the Year 1 group received a transition planning intervention consisting of (a) group training sessions for families in the transition process, (b) person-centered planning meetings facilitated by project staff, and (c) follow-up assistance with career exploration and plan implementation. Data were collected pre- and post implementation to measure student and family expectations, self-determination, and career decision-making ability. The Year 2 group began receiving services following the second data collection point. Participants in the Year 1 group reported statistically significant increases in all four measured variables, whereas the Year 2 group showed no significant changes. Implications for redesigning transition services for this population are discussed.

 

A link to the full text for this article is available in the March 2012 SAGE Journal at http://foa.sagepub.com/content/27/1.toc

Press Release Notes Lingering Questions Concerning Access to Long-Term Services and Supports (LTSS)

 

The American Association of People with Disabilities (AAPD) issued a September 2013 press release highlighting a statement by Commission on Long-Term Care member Henry Claypool, Executive Vice President of AAPD concerning the final recommendations of the federal Commission on Long-Term Care. In the Statement Claypool notes, "While the Commission and staff worked under extraordinary pressures due to the lack of time and resources, the Commission's report does not address a central piece of its Congressional charge - how all Americans can get their long-term services and supports (LTSS) needs met. The vast majority of working Americans with disabilities are forced to pay out-of-pocket or remain impoverished in order to receive the long-term services and supports they need to lead meaningful lives...While the Commission incorporated certain recommendations related to Medicaid, the Commission failed to meaningfully address the institutional bias of Medicaid in its report. It is critical the federal government continues to provide incentives for states to rebalance their Medicaid programs so that people with disabilities and older Americans can live independently in their home and communities across the nation."

 

To read the full statement, go to http://www.aapd.com/resources/press-room/statement-by-henry-claypool.html

 Julie + Michael Tracy Family Foundation (JMTF) and Urban Autism Solutions Seeks to Implement Creative Residential and Employment Options

The Foundation, in cooperation with the "Rush University Medical Center providing medical oversight, is developing residences in a vital, urban Chicago neighborhood that will provide a supported passage to an interesting and fully integrated community life." The model combine research and public awareness to advance an approach to support that promotes independence and community integration in the contexts of social, vocational and educational goals. A key project of the Foundation is Urban Autism Solutions, a transitional housing program. In an October 2013 guest blog post at autismcollege.com, the founders noted, "The long-term goal of the JMTF and Urban Autism Solutions is to provide a safe and supported passage to a fully integrated community life. Through our initiatives of residential housing, groundbreaking research, vocational opportunities and an alliance with the Rush [Autism Assessment Research and Treatment Service Center] (AARTS) Center, we know we are creating viable opportunities and solutions for young adults and families with autism." To learn more about the Foundation and its initiatives, go to www.jmtf.org

Coleman Institute Advances Rights of Those with Cognitive Disabilities to Technology and Information Access


In recognition of the still limited accessibility of technology and information, the Coleman Institute for Cognitive Disabilities, University of Colorado has put forth a declaration calling for equal access. The Declaration represents the position of a coalition of disability organizations and individuals, as announced on October 2, 2013 at the Thirteenth Annual Coleman Institute National Conference on Cognitive Disability and Technology. The Declaration (colemaninstitute.org/declaration) invites "all of you to read this declaration, The Rights of People with Cognitive Disabilities to Technology and Information Access, by following the link below, and to affirm your commitment to the equal rights of people with cognitive disabilities to technology and information access by endorsing it on this website." Key features of the Declaration website include access to a linguistically accessible version of the Declaration (as provided by The Arc) and a video outlining its significance.

The Arc Updates its HealthCare Page and Launches an Affordable Care Act (ACA) Toolkit


The ACA reflects significant changes to healthcare access for people with disabilities, including access to insurance through the Marketplace. In order to keep people informed, The Arc has an updated Health Care page with information and resources available at http://www.thearc.org/what-we-do/public-policy/policy-issues/health-care?srctid=1&erid=4685015&trid=af15112a-b09a-4a91-8558-ea502bb5139b. The updated page includes a new toolkit specifically designed to educate individuals about the benefits of the ACA and how to support outreach and enrollment in the Marketplace. Additional resources available include The Affordable Care Act: What Disability Advocates Need to Know, a comprehensive overview of the ACA specifically for advocates; a one-page summary of the guide; a 9-minute video introduction to the health care reform; and direct links to useful information.

National Survey of Service Coordinator/Case Manager & Family Experiences with SSI is Being Conducted, as announced by The Arc 


An online survey (http://www.surveymonkey.com/s/SSIexperiences) is being conducted to understand the experiences of service coordinators/case managers and families/caregivers who have applied for SSI benefits (or assisted in the SSI application process) for an individual with intellectual or developmental disabilities. The survey asks about what is working well, challenges and recommendations for improvement. Responses are anonymous and will not affect the SSI benefits individuals receive. Survey participants are eligible for an incentive by lottery. The survey is funded by Policy Research Inc. through a grant from Social Security Administration, and is being conducted by John Keesler, a doctoral candidate in the School of Social Work at the University at Buffalo. Questions can be directed to John at jkeesler@buffalo.edu or (716) 983-2513.
Survey of Caregivers Seeks Information about Health and People with Disabilities, as announced in The Arc's Fusion (October 2013)

The Arc's HealthMeet initiative, which aims to reduce health disparities among people with I/DD, is launching a short, internet-based survey for family or staff caregivers of people with intellectual disabilities. This survey asks questions about health status of people with intellectual disabilities in different areas that are noticed by caregivers but can also be used as a checklist to help caregivers identify red flags about the health of the person you care for. The survey takes about 15 minutes and is free of charge. Take the survey at http://fluidsurveys.com/surveys/the-arc-of-the-united-states/hm-caregiver-assessment-survey/.

Volume 12      

 

"Reaching out, 

teaching from life experience."
In This Issue
Support Means Knowing Who I Am
Evidence-Based Practice Makes Me a Better DSP
Supporting Jeremy at Home and in the Community
What is the Research Saying about Autism and Young Adulthood?
Research: Prevalence and correlates of postsecondary residential status among young adults with an autism spectrum disorder
Research: Postsecondary employment experiences among young adults with an autism spectrum disorder
Research: Outcomes of a Family-Centered Transition Process for Students With Autism Spectrum Disorders
Press Release Notes Lingering Questions Concerning Access to Long-Term Services and Supports (LTSS)
Julie + Michael Tracy Family Foundation (JMTF) and Urban Autism Solutions
Coleman Institute Advances Rights of Those with Cognitive Disabilities to Technology and Information Access
The Arc Updates its HealthCare Page and Launches an Affordable Care Act (ACA) Toolkit
National Survey of Service Coordinator/Case Manager & Family Experiences with SSI is Being Conducted
Survey of Caregivers Seeks Information about Health and People with Disabilities
 

  

The ARI Adults with ASD eBulletin

Editorial Staff

 

 

 

Valerie Paradiz, PhD

Editor-in-Chief

Executive Director,

Autistic Global Initiative

 

   

  

 Janine M. Collins, MTS, MSW

Managing Editor

Participant in the

Autistic Global Initiative 

 

   

   

  

Chloe Rothschild  

Editor in Training

Young Leader in the

Autistic Global Initiative 

 

 

 

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