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Thursday
Jan142016

2015 Housing Conference Videos Now Available

On October 14, 2015, EASI Foundation and Families CCAN co-hosted "Solving the Housing Crisis for Adults with Developmental and Intellectual Disabilities: Challenges, Opportunities and Innovation," a full-day conference that sold out our 300 available seats.

This issue is of paramount concern to people with autism and I/DD, their families, providers and policy makers. The conference raised many important questions, provided much relevant information, and facilitated the connection of hundreds of stakeholders, but the fight for housing for this population is far from over.

Click on the links below to see the presentations, ordered by topic:

 

Keynote:  National Perspective - Innovative Housing Models Across the Country

Desiree Kameka, National Coordinator, Coalition for Community Choice, Madison House Autism Foundation, Rockville, MD

 

Commonwealth of Pennsylvania State Perspective

Nancy Thaler, Deputy Secretary, Office of Developmental Programs, Dept. of Human Services, Pennsylvania

Jennifer Burnett, Deputy Secretary, Office of Long Term Living, Dept. of Human Services, Pennsylvania

David Gates, Senior Attorney and Director of Policy, Health Law Project

 

Organization Supported Housing – Highlighting Opportunities and Challenges

Judy Dotzman, Executive Director, SPIN                

Maggie Haag, Director Adult Residential Services, Melmark                        

Beth Rosenwasser, Judith Creed Homes for Adult Independence (JCHAI)

Lisa Parles, parent and disability attorney

 

Grass Roots Supported housing - Highlighting Opportunities and Challenges

 

Susan Tachau, Executive Director, Pennsylvania Assistive Technology Foundation, Founder of Homeworks (Susan's talk concludes here)

Ann Bradley, Founder of Emmaus Home

Diane Belnavis, Founder of Juniper Hill Farms

 

4:00–5:00     Public Private Partnerships to Develop Housing

Moderator: Holly Glauser, Director of Development, Pennsylvania Housing Finance Administration

Roy Diamond, Principal, Diamond and Associates -- Autism Housing Development Corporation of Pittsburgh

Tom Toronto, President, Bergen County, NJ United Way

Nancy Murray, President, The Arc of Greater Pittsburgh at ACHIEVA

     

Thursday
Jan142016

2013 Symposium DVDs Now Available

Dr. Matthew Siegel, Dr. Lee Wachtel, and EASI President Amy Lutz

There are few things as disruptive to a family as a child who is a constant threat to hurt himself or others.  And there is so much bad information out there, leaving parents convinced they can stop their children's severe aggression and/or self-injury by dietary changes or discipline, when in many cases these types of interventions are doomed to fail.  So we were thrilled to host our first symposium, "Treating Dangerous Behaviors in the Developmentally Disabled," featuring Dr. Lee Wachtel, Medical Director of the Neurobehavioral Unit at the Kennedy Krieger Institute, and Dr. Matthew Siegel, Director of the Neurobehavioral Unit at Spring Harbor Hospital, on December 4.  Approximately 130 parents and providers from facilities across the region came to listen to the fabulous talks, which focused on the function of behaviors (or lack thereof), specialized inpatient units, medication, and electroconvulsive therapy.

DVDs of the symposium are now available for $20 (which includes shipping). To order, send a check to EASI Foundation, P.O. Box 351, Villanova, Pennsylvania 19085. Or if you'd like to pay by credit card, you can pay $20 through the PayPal link on our home page and send an email with your address to amy@easifoundation.org. Please contact us if the cost represents a financial hardship; we have several DVDs set aside for those in need that we are happy to provide at no charge.

Tuesday
Sep292015

Schedule Now Available for October Housing Conference!

Almost 200 parents, providers and advocates have already registered to join us at the University of Pennsylvania for our October 14 conference, "Solving the Housing Crisis for Adults with Developmental and Intellectual Disabilities: Challenges, Opportunities and Innovation." We have space for 100 more; if you want to see the full agenda before you sign up, check it out here.

Registration information is available here. Hope to see you!

Thursday
Aug272015

Registration Open for Our October Housing Conference!

Together with another parent advocacy group, Families CCAN: Families Creating Communities for Adults with Special Needs, EASI is hosting our second conference: "Solving the Housing Crisis for Adults with Developmental and Intellectual Disabilities: Challenges, Opportunities and Innovation," which will take place on Wednesday, October 14 at the Perelman Quadrangle at the University of Pennsylvania.

Nothing panics parents of children with I/DD more than the thought of where they will live when they get older. We are thrilled at the line-up of speakers we have assembled to address this critical issue, including Pennsylvania's new Deputy Secretary of the Office of Developmental Programs, Nancy Thaler, and our keynote speaker, Desiree Kameka, the National Coordinator of the Coalition for Community Choice. Attendees will have the opportunity to network with other families, service providers, advocacy organizations, housing developers, government officials, special needs attorneys and other stakeholders.

More details -- including a list of speakers and registration info -- is available here. Please join us!

Sunday
Apr072013

New Study Finds Alarming Level of Aggression in Autistic Children

A study just published in the journal Research in Autism Spectrum Disorders found that a staggering 53% of over 1500 autistic subjects (aged 2 to 17) exhibited aggressive behaviors.  We asked the lead author, Dr. Micah O. Mazurek, to explain the significance of his data.

EASI:  Does the fact that close to 50% of the subjects across all age groups exhibit aggressive behaviors suggest to you that these behaviors persist over time - i.e., that it's likely that aggressive autistic children will grow into aggressive autistic adults?

Dr. Mazurek: Yes, I agree that these percentages across time (particularly among older adolescents) are quite alarming.  The effects of aggression can be more serious as individuals reach adolescence and adulthood, so we think this finding is certainly concerning.  I would like to mention, though, that this was a cross-sectional study.  We weren't able to follow the same individuals over time to determine the long-term course of aggression for an individual child.  It is also important to note that our measure of aggression was very broad, so it is likely that the severity ranged from mild to more severe (among children who were classified as having aggression).

EASI: Considering these subjects are all part of the Autism Treatment Network, is it fair to assume all the children were being treated for their aggressive behaviors? Given, as mentioned above, the small decrease in aggression found in older children, would it be fair to say that current treatment protocols for aggression (behavior plans, antipsychotics, etc.) are not very effective?

Dr. Mazurek: Actually, the data for this study were collected when children were first enrolled in the ATN (their "baseline" data).  For this study, we didn't collect data on treatments received prior to their enrollment, so we can't really address the question of treatment effects.  Because the ATN is a longitudinal project, however, our next step in this line of research is to examine the course of aggression over time, predictors of improvement (or worsening) of aggression, and response to treatments.

EASI: What implications do your findings have for the health care system - in other words, how are we as a nation going to care for such an enormous population of aggressive, autistic adults?

Dr. Mazurek: Aggression is a serious issue - with obvious negative effects for the individual as well as his/her family and community.  Not only does aggression result in physical harm, but it can lead to poor long-term outcomes (increased risk of out-of-home placement, increased use of psychotropic medication, increased family stress, caregiver/teacher burnout, etc).  Aggression and other challenging behaviors also interfere with an individual's ability to participate and benefit from therapies and educational services, which also affects long-term success.  For all these reasons, I think we need to be focusing much more attention on identifying underlying mechanisms of aggression in subsets of children, and developing prevention and treatments that are individualized to address those particular mechanisms.

EASI: Are you currently working on, or do you plan on working on, additional studies examining severity of or effective treatments for aggression?

Dr. Mazurek: Yes - I am very interested in continuing to pursue this research, and am hopeful that our work will provide some answers that may help families and children in the future.  My colleagues and I published the results of another large-scale study of prevalence and predictors of aggression in children with ASD in 2011, and we are continuing to study the long-term course and outcomes of aggression across ages and functional levels.  
We are also very interested in developing or modifying treatments to help address this issue.  For example, we are in the process of completing a clinical trial examining the effectiveness of an adapted therapy for adolescents with ASD and aggression and their families.  We hope to be able to share the results of this study in the near future.