Bibliography for ‘Shouldn’t School Be Safe?’ a TASH webinar

This bibliography is a companion piece to the presentation ‘Shouldn’t School Be Safe?’ a TASH webinar shared by  by Pat Amos during the Autism Safety and Crisis Prevention webinar. The presentation contains a link to the TASH publication of the same name, which is available for free download on the TASH website. This link will take you to the section of the TASH website where we have archived free resources on preventing restraint and seclusion:

This bibliography also contains basic research and information that will allow parents to become familiar with the evidence base surrounding the dangers and the inappropriateness of using restraint, seclusion, and other aversive interventions as part of a child’s education or behavior support plan.  Since federal education law requires schools to implement evidence-based practices, parents may wish to use this information in developing their child’s IEP.

 BIBLIOGRAPHY for : Shouldn’t School Be Safe? What every parent and advocate should know NOW  (compiled by Pat Amos);

  • Alliance to Prevent Restraint, Aversive Interventions, and Seclusion (APRAIS) (2005).  In the Name of Treatment.  Available online.
  • Alliance to Prevent Restraint, Aversive Interventions, and Seclusion (APRAIS) (2011). Use of Restraint, Seclusion, and Aversive Procedures with Students with Disabilities .
  • Bogdan, R., and Taylor, S.J. (1989). “Relationships with Severely Disabled People: The Social Construction of Humanness,” in Social Problems 36,2:135-148.
  • Council of Parent Attorneys and Advocates (COPAA) (2009).  Unsafe in the Schoolhouse.  Available online.
  • Hardenstine, B. (2001).  Leading the Way Toward a Seclusion and Restraint-Free Environment.  Commonwealth of Pennsylvania: Department of Public Welfare.
  • Harris, S. L., Handleman, J.S., Gill, M. J. & Fong, P. L. (1991). Does Punishment Hurt?  The Impact of Aversives on the Clinician.  Research in Developmental Disabilities, 12, 17-24.
  • Helmstetter, E., Peck, C. A., & Giangreco, M. F. (1994). “Outcomes of interactions with peers with moderate or severe disabilities: A statewide survey of high school students,” in JASH, Vol. 19, 263-276.
  • Herman, J .L. (1992). Trauma and Recovery.  NY: Basic Books.
  • Huckshorn, K. A.(2007).  Six Core Strategies for Reducing Seclusion and Restraint Use.  Available online.
  • Hunt, P., Staub, D., Alwell, M., & Goetz, L. (1994). “Achievement by all students within the context of cooperative learning groups,” in JASH, Vol. 19, pp. 290-301.
  • Hyman, I. A. (1995). Corporal punishment, psychological maltreatment, violence, and punitiveness in America. Research, advocacy, and public policy. Applied & Preventive Psychology, 4, 113-130.
  • Hyman, I. A. (1996). Corporal punishment. In T. Fagan, & P. Wardon (Eds.), Historical Encyclopedia of School Psychology (pp. 92-93). Westport, CT: Greenwood
  • Kennedy, S. S. (2005). Using Restraint: The Legal Context of High Risk Interventions.  Presentation at “Examining the Safety of High-Risk Interventions,” Cornell University, June 1-4.
  • Kennedy, S. S. and Mohr, W. K. (2001).  A Prolegomena on Restraint of Children: Implicating constitutional rights.  American Journal of Orthopsychiatry, 71(1), 26-37.
  • Kipnis, D. (1987).  Psychology and Behavioral Technology. American Psychologist, 42(1), 30-36.
  • Kishi, G. S., & Meyer, L. H. (1994). “What children report and remember: A six-year follow-up of the effects of social contact between peers with and without severe disabilities, “ in JASH, Vol. 19, pp. 277-289
  • LeBel, J., and Goldstein, R. (2005). The Economic Cost of Using Restraint and the Value Added by Restraint Reduction or Elimination,” by Psychiatric Services, 56:1109-1114.  Available online.
  • Marquis, J., Horner, R., et al. (2000).  A Meta-Analysis of Positive Behavior Support. In Contemporary Special Education Research: Syntheses of the Knowledge Base on Critical Instructional Issues ed. Russell Gersten, Ellen P. Schiller, and Sharon Vaughn Mahwah, New Jersey and London: Lawrence Erlbaum Associates.
  • Miller, D. C., George, M. and Fogt, J.B. (2005). “Establishing and Sustaining Research-Based Practices at Centennial School:  A descriptive case study of systemic change,” Psychology in the Schools, Vol. 42(5).  Available online.
  • Miller, D. E. (1986). The management of misbehavior by seclusion. Residential Treatment for Children and Youth, 4, 63-73.
  • Mohr W. K., and Anderson, J. A. (2001). Faulty assumptions associated with the use of restraints with children. Journal of Child and Adolescent Psychiatric Nursing, 14, 141- 151.
  • Mohr, W. K., Petti, T. A., Mohr, B. D. (2003). Adverse Effects Associated with Physical Restraint.  The Canadian Journal of Psychiatry, 48, 330-337.
  • National Association of State Mental Health Program Directors. (1999). Reducing the Use of Seclusion and Restraint: Findings, strategies and recommendations. Alexandria, VA. Available online.
  • National Disability Rights Network (NDRN) (2009). School is not supposed to hurt.  Available online.
  • National Disability Rights Network (NDRN) (2010). School is not supposed to hurt: update on progress in 2009 to prevent and reduce restraint and seclusion in schools .  Available online.
  • National Technical Assistance Center for State Mental Health Planning (2002).  Eliminating the Use of Seclusion and Restraint: Special Edition of NTAC Networks.  Alexandria, VA.  Available online.
  • Perry, B.D. (1997). Incubated in Terror: Neurodevelopmental factors in the “cycle of violence.” In J. Osofsky (Ed.),  Children in a Violent Society, 124-149. New York: Guilford Press.
  • Perry, B. D., Pollard, R. A., Blakley, T. L., Baker, W. L., and Vigilante, D. (1995). Childhood Trauma, the Neurobiology of Adaptation and Use-dependent Development of the Brain: How states become traits.  Infant Mental Health Journal, 16, 271-289.
  • Pflueger, W. (2002).  “Consumer View: Restraint is Not Therapeutic.”  In Violence and Coercion in Mental Health Settings: Eliminating the Use of Seclusion and Restraint,” a Special Edition of NTAC Networks, Summer-Fall.  Alexandria, VA:  National Technical Assistance Center for State Mental Health Planning.  Available online.
  • Scotti, Joseph, Evans, Ian, Meyer, Luanna, and Walker, Pamela (1991). A Meta-Analysis of Intervention Research with Problem Behavior: Treatment Validity and Standards of Practice. American Journal on Mental Retardation, Vol. 96, No. 3, pp. 233-256.
  • Steel, E. (1999). Seclusion and Restraint Practice Standards: A Review and Analysis.  National Mental Health Association Technical Assistance Center (NTAC). Available online.
  • Stefan, S. (2006).  Lessons from the Successful Reduction and Elimination of Restraint and Seclusion in Psychiatric Settings.  Presented at TASH Annual Conference 11/8/06, Baltimore, MD.
  • TASH (2011).  Shouldn’t School Be Safe?   Available online: http://tash.org/wp-content/uploads/2011/05/TASH_Shouldnt-School-Be-Safe1.pdf
  • TASH (2011). The Cost of Waiting: Use of restraints, seclusion, and aversive procedures with students with disabilities.  Available online.
  • Turnbull, H. R., Wilcox, B. L., Stowe, M., Raper, C., Hedges, L. P. (2000).  Public Policy Foundations for Positive Behavioral Interventions, Strategies, and Supports.  Journal of Positive Behavioral Interventions, 2 (4).
  • Turnbull, H. R., Wilcox, B. L., Turnbull, A. P., Sailor, W., Wickham, D. (2001).  The IDEA, Positive Behavioral Supports, and School Safety.  Journal of Law and Education, 30(3).
  • U.S. General Accounting Office (GAO) (1999).  Improper Restraint or Seclusion Use Places People At Risk. (GAO publication HEH-99-176).  Washington, D.C.: USGAO.  Available online.
  • U.S. General Accounting Office (GAO) (2007). Residential Treatment Programs: Concerns Regarding Abuse and Death in Certain Programs for Troubled Youth.  (GAO-08-146T). Washington, D.C.: USGAO.  Available online.
  • United States Government Accountability Office (GAO) (2008). Residential Programs: Selected Cases of Death, Abuse, and Deceptive Marketing, GAO-08-713T Washington, D.C.: USGAO.  Available online.
  • United States Government Accountability Office (GAO) (2009).  Seclusions and Restraints:  Selected Cases of Deaths and Abuse at Public and Private Schools and Treatment Centers. (GAO-09-719T). Washington, D.C.: USGAO.  Available online.
  • Witte, L. (2008). “Reducing the use of seclusion and restraint: A Michigan provider reduced its use of seclusion and restraint by 93% in one year on its child and adolescent unit,” Behavioral Healthcare, April 2008.  Available online.

Wandering and Autism: Prevention Strategies and Resources

Wandering is a real risk when it comes to children on the autism spectrum.  Sadly,  half of families with elopers report they had never received advice or guidance about elopement from a professional (IAN Research Report: Elopement and Wandering, 2011).

Autism College, in partnership with the National Autism Association, wants to help change that statistic. On Saturday February 18, we are offering a webinar on The Scope of Wandering, Prevention Strategies, and Resources as part of our free  online Autism Safety and Crisis Prevention conference, sponsored in part by The Social Express. It’s your opportunity to get  strategies you can use to decrease your worries.  The webinar will take place on  Saturday, February 18, 8:15 am – 9:45 am PST (11:15 am -12:45 pm EST). The webinar will be interactive.

Register here for the conference, and you will receive information on how to attend this webinar.

How much of a problem is wandering for children with autism? A few statistics:

  • In 2009, 2010, and 2011, accidental drowning accounted for 91% total U.S. deaths reported in children with an ASD ages 14 and younger subsequent to wandering/elopement. (SOURCE: National Autism Association, Lethal Outcomes in ASD Wandering, 2012)
  • More than one third of ASD children who wander/elope are never or rarely able to communicate their name, address, or phone number (IAN Research Report: Elopement and Wandering, 2011)
  • Two in three parents of elopers reported their missing children had a “close call” with a traffic injury (IAN Research Report: Elopement and Wandering, 2011)
  • Children with ASD are eight times more likely to elope between the ages of 7 and 10 than their typically-developing siblings (IAN Research Report: Elopement and Wandering, 2011)

Description of Presentation Topic: The Scope of Wandering, Prevention Strategies, and Resources

Incidents of missing children and wandering-related deaths are being reported in the news with frightening frequency. In the last three years, more than 20 individuals with autism have lost their lives due to wandering. Preliminary data in the first IRB-approved study on autism-related wandering shows that half of children with autism have successfully wandered from adult supervision. Families cite wandering as the most stressful behavior they face. Drowning associated with autism elopement is a leading cause of death among children and adults on the autism spectrum. This presentation will discuss the scope of this issue, prevention strategies and provide resources for caregivers to keep their loved ones safe.

Presenter: Wendy Fournier is a founding board member and President of the National Autism Association.  The organization has been instrumental in bringing federal attention to the issue of autism-related wandering.  In 2010, Wendy and NAA Executive Director Lori McIlwain were invited to present on the wandering/elopement issue before the Interagency Autism Coordinating Committee at NIH, where they outlined the need for data collection, medical diagnostic coding, and federal health agency involvement. As a result, the committee has since implemented several of NAA’s recommendations. In addition to bringing awareness to the issue, NAA has developed extensive resources for the community including the AWAARE collaboration website and the Big Red Safety Box program.

Register here for the conference.

Preventing and Eliminating the Use of Restraints and Seclusion in Schools

Successful reforms have taken place in health care settings, in nursing homes, and in programs treating mental illness, but currently there is no federal law that prohibits in public and private school the use of face down restraints, aversive interventions, restraints that restrict breathing, and locked seclusion.  These practices can result in serious injury, psychological trauma, and even death.

What can we do about this? the first step is to get informed. On Saturday, February 18, 10:00 – 11:30 am PST (1:00 pm – 2:30 pm EST) Pat Amos M.A.,  will be presenting on:  Preventing and Eliminating the Use of Restraints and Seclusion To register for free, go here.

This webinar is part of a series of on-line conference webinars on Autism Safety and Crisis Prevention offerred for free by Autism College in partnership with the National Autism Association (NAA), and sponsored in part by The Social Express.

Description of Presentation Topic:  Preventing and Eliminating the Use of Restraints and Seclusion

The rising tide of Positive Behavior Supports has not lifted all boats, and many students with autism and related disabilities continue to be subjected to the use of restraint, seclusion, and other aversives as part of their education and behavior intervention plans. Successful reforms have taken place in health care settings, in nursing homes, and in programs treating mental illness, but many of our schools have not yet “gotten the word” that these techniques are inherently unsafe and can result in serious injury, psychological trauma, and even death. Evidence clearly shows that restraint and seclusion are not education; they are the failure of education. This webinar will help parents, advocates, and teachers understand how to work together to eliminate these highly dangerous and counterproductive techniques.

Presenter: Pat Amos, M.A., has been an advocate for people with disabilities and their families for over 25 years. She is a founder of Autism Support and Advocacy in Pennsylvania and the Family Alliance to Stop Abuse and Neglect, past president of the Greater Philadelphia Autism Society, a founder and past president of the Autism National Committee, has served as a member of Pennsylvania’s Developmental Disabilities Council, and is a Board member of international TASH.  She currently works as an Inclusion Specialist with the Youth Advocate Program’s Autism Institute.   Her involvement in the movement to prevent restraint and seclusion is longstanding, and she has worked with the national Alliance for the Prevention of Restraint, Aversive Interventions, and Seclusion (APRAIS) since participating in its founding in 2004.

Register here for the conference.

What Can We Do About Depression and Suicidal Ideation in Youths With Autism?

Depression and suicide ideation are are on the list of things we wish we did not have to know more about, but as parents and educators, it is an area that we need to be more informed about – knowledge is empowering!

Autism College in partnership with the National Autism Association (NAA) is presenting a series of free on-line conference webinars on Autism Safety and Crisis Prevention,  sponsored in part by The Social Express.

On Wednesday, February 15, 6:00pm to 7:30pm PST (9:00pm to 10:30pm EST) Dr. Joshua Feder will be addressing this topic. To register for free, go here.

Here is some information as to what this webinar will cover:

Presentation Topic: The Problem of Depression and Suicidal Ideation in Autism and Related Disorders

  • How often do we think it occurs?
  • How serious is it?
  • How do we distinguish serious symptoms from everyday frustration?
  • What are the risk factors? Are they similar to the general population, e.g. depression, loss, and substance use?
  • What should we look for?  Learning to read the cues.
  • When should we be very worried? Does the driven quality of those with ASDs make people more at-risk?
  • What can we do: in everyday life to help prevent depression; when people are sad;
  • How can we use the mental health system?  Are therapies or medications effective? Are there other ways to address depression in ASD?

Dr. Joshua Feder is the Director of the Department of Research in the Graduate School of the Interdisciplinary Council on Developmental and Learning Disorders, and a voluntary assistant professor at UCSD School of Medicine.  Dr. Feder specializes in neurobehavioral medicine and application of DIR/Floortime with families and in schools.  He co-chairs the DIR/Floortime Coalition of California, and co-chairs the South Counties Autism Regional Taskforce (SCART) of the California Senate Select Committee on Autism & Related Disorders. Dr. Feder helped write the American Academy of Child and Adolescent Psychiatry (AACAP) Practice Parameter for Assessment and Treatment of Autism and Related Disorders. He reviews grants for the Organization for Autism Research (OAR) and the National Foundation for Autism Research (NFAR), is a primary clinical investigator for National Institutes of Mental Health (NIMH) and privately funded research in pharmacogenetics with the Child and Adolescent Psychiatric Trials Network (CAPTN).  Dr. Feder serves as medical director for SymPlay developing interactive technology and distance learning systems to support relationship based interventions.  He is involved in advocacy for family choice in evidence-based practice, and he is a frequent commentator and speaker for ValeriesList and for Autism College. Dr. Feder has a full time child and family psychiatric practice in Solana Beach, California.

Register here for the conference.

Everyday Autism Crap

“Nicely, kindly I need u to teach me to do my own crap.”

Such was  my son Jeremy’s response when I asked him recently in what ways we could best support him in moving towards being more independent and feeling ready for supported living. Just goes to show you that even when you are living with non-verbals you have to watch what you say. Not just in choosing your vocabulary, but also in what you complain about.

Jeremy has probably overhead me say more that a few times, “I’m so sick of this crap!” when looking at the piles of official paperwork that needs to be filled out, sent in, or filed. And the pile of stuff that just seems to accumulate everywhere if you don’t immediately recycle it or find another home for it.

So I’m not perfect (at least not when verbalizing at home). And Jeremy has been learning to do his own crap, just not enough of it. I guess we need to ante up his crap-load. Stay tuned!

 

How can parents reduce the risk of sexual abuse of their children (as adults or children) with autism?

“I have suffered real abuse. Really if it were not for my mom and my therapist pleading for me, I would have retreated into my world. When the bad thing  happened I wanted to  die. Greatly  my mom and therapist  found  a way to help  me grow  from this  experience. I learned  that  there  were really bad people that could do things  to your  body,  but I learned that  you don’t have to let them into your soul.”  – a young man with autism.

Although data on abuse of adults with disabilities is scarce, research on children with disabilities finds that they become victims of abuse at 3.4 times the rate of children who do not have disabilities (Sullivan,T. and Knutson, D., 2001).  While many agree that abuse occurs more, those who specialize in the field of abuse & disability believe that for both children and adults, increased victimization is more likely 10 times the rate than for those without disabilities.

Dr. Nora BaladerianAccording to Nora Baladerian, Ph.D., a licensed psychologist practicing both clinical and forensic psychology, children with disabilities have many of the same needs as any other child, for education, family, safety, recreation, among many others.  Most parents of children with disabilities receive information and guidance on these aspects of life, but nearly none on the problems of child abuse, sexual assault, molestation, or other types of maltreatment that they may experience.  Knowledge is power, and when parents and other family members are aware that their child (or adult family member) who has a significant disability is more likely to be targeted for abuse than other children, they are more likely to implement the risk reduction strategies available to them.

This is one of the reasons Autism College has partnered with the National Autism Association to put on a free online conference, Autism Safety and Crisis Prevention. This series of  webinars is sponsored in part by The Social Express.  Dr. Nora Baladerian will present on: How can parents reduce the risk of sexual abuse of their children (as adults or children)?,  on Saturday, February 11, 8:15am PST – 9:45am PST (11:15am EST – 12:45pm EST)

The webinar will be interactive. There will be an opportunity for those signed up to send in questions ahead of time or while listening to the program. Chantal Sicile-Kira will moderate the Q & A.  To register for free, go here. For more information about the other webinars included in this conference, go here. Instructions will be sent to those signed up. (For those who wish to purchase transcripts, they will be made available after the conference.)

Dr. Baladerian’s presentation  How can parents reduce the risk of sexual abuse of their children (as adults or children)? will focus on the basics all parents should know about sexual abuse among individuals on the Autism Spectrum. Topics to be included include:

  • You know your child. How can you prepare your child for this particular danger?
  • How can you prepare yourself to be not only their educator, but to be a part of an overall strategy to reduce the risk of becoming a victim?
  • This presentation will discuss the basics of being a knowledgeable parent in the area of sexual abuse, including knowing the signs of possible abuse, designing a plan, and developing a protocol to use for all new persons who you will approve or hire to work with your family.

Nora Baladerian, Ph.D., is a licensed psychologist in Los Angeles, California, practicing both clinical and forensic psychology . Since 1971, long before the crime victimization field as a whole focused attention on the needs of persons with disabilities, she has specialized in working with individuals with developmental disabilities. With an expertise in serving crime victims with disabilities and people charged with victimless sex crimes, she has successfully rallied victim/witness organization leaders, crime victims rights advocates, social service professionals, forensic psychologists, law enforcement, attorneys, members of the judiciary, and others to take up the cause of ensuring that the needs of society’s most vulnerable are not overlooked or otherwise forgotten. In 1986, as a proactive way both to bring together the growing number of those dedicated to this work and promoting greater cross-disciplinary dialog, she began convening national conferences on abuse of individuals with disabilities, hosting the 19th in 2005 with The Arc of Riverside County, and the First Online Professional Conference of its kind that same year. In 2008, the Attorney General of the United States presented her with the National Crime Victims Service Award in recognition of her pioneering efforts on behalf of persons with disabilities and in advancement of the mission of the Office for Victims of Crime of the U.S. Department of Justice.

Many thanks to our sponsor, The Social Express,

The Social ExpressSocial Learning Made Easy

How Can We Help Prevent Bullying of Students with Autism?

A few years ago, I interviewed many adults on the spectrum for my book Autism Life Skills about what were the important areas that concerned them the most while growing up. High on the list was safety. Many of them described  feeling terrified  during their student  years.  Practically all  recounted instances of  being bullied.  A recent report from the Massachusetts Advocates for Children (Ability Path, 2011) shows that bullying is still a concern for most students: nearly 88% of individuals with ASD are bullied in school.

This is one of the reasons Autism College has partnered with the National Autism Association to put on a free online conference, Autism Safety and Crisis Prevention, sponsored in part by The Social Express. Dr. Lori Ernsperger will be presenting on The 3 R’s To Bullying Prevention for Students with Autism Spectrum Disorders: Recognize, Respond, and Report, on Saturday, February 11, 10:00 – 11:30am PST (1:00 – 2:30pm EST).

Parents can help by ensuring that their children learn and practice social skills either through the IEP process or after school and at home. However, preventing bullying at school needs to be addressed systematically.   Dr. Ernsperger will provide research and specific strategies in order for parents and professionals to create a safe educational environment and follow the legal requirements set out by the federal government on bullying prevention for students with disabilities.  The webinar will be interactive. There will be an opportunity for those signed up to send in questions ahead of time or while listening to the program. Chantal Sicile-Kira will moderate the Q & A.  To register for free, go here. For more information about the conference, go here.

The learning objectives of  Dr. Ernsperger’s presentation are:

  • Recognize the statistics of bullying
  • Recognize the warning signs of victims and stereotypes of bullies
  • Respond to the victims of bullies
  • Respond to bullies effectively
  • Teach anti-bullying social skills
  • Report bullying incidence in school settings

Dr. Lori ErnsbergerDr. Lori Ernsperger is from Henderson, NV where she is the owner of Autism and Behavioral Consulting. Dr. Lori received her doctorate in Special Education from Indiana University. She has over 25 years of experience working in the public schools as a classroom teacher, administrator, and behavioral consultant. She is also an adjunct professor at St. Petersburg College in Florida. Dr. Ernsperger currently provides staff development and conference workshops to school district personnel and parents.  Her workshops cover the following topics: Managing Problem Behaviors, Implementing Effective Instructional Methods, Designing Appropriate and Functional Data Collection Methods for the Classroom, Practical Strategies for Working with Individuals with Asperger Syndrome, and How to Get Your Kids to Eat. Dr. Ernsperger is the author of: Keys to Success for Teaching Students with Autism and Just Take a Bite: Easy Effective Answers to Food Aversions and Eating Challenges and Girls Under the Umbrella of Autism Spectrum Disorders.

Many thanks to our sponsor,The Social Express, “Social Learning Made Easy.”

Beyond Brochures

How to research and evaluate premium college support programs for students with learning disabilities.

By Wendy Byrnes and Eileen Crumm, Ph.D.; Finding Solutions LLC

GETTING STARTED

In recent years, more and more students with disabilities have graduated from high school and entered the post-secondary educational environment of college or vocational training.  The good news is that in response to this population’s unique learning profiles, a growing number of programs that offer support to those students have emerged.  Such programs may offer a menu of specialized or premium services that can include academic tutoring, liaison with post-secondary programs, coordination services, life skills instruction, social skills training, coaching and mentoring, vocational education, job internships and job placement.

Students with disabilities that are leaving high school should look for classes or a course of study that interests them.  It may include community college, vocational and certificate programs or a university.  This is a daunting task for many students, as they plot their course in life – hopefully independently.  College is achievable with preparation and meaningful supports and it is particularly important that students take ownership of their future, whenever possible.  A question that must be asked is “Who is holding the expectations for what will happen once a student leaves high school?”  Parents and professionals need to continue to mentor and advocate for the transitioning student while aligning future expectations with desires and capabilities.

While supported programming holds the promise of helping a student transition to a productive, young adult life, no one program will provide a panacea.  Due diligence should be done when investigating various options and looking well beyond any program’s brochure and marketing efforts is an absolute must.  The old adage of “wherever you are, there you go!” provides a healthy measure of truth for consideration in whatever plans are made.  Students and their families (along with professionals that may support the transition process) should be informed and empowered to find the most current and appropriate range of options.

As the demand for specialized support programs has increased, so then has the supply. Recognizing an opportunity for additional areas of service, various colleges, universities, for profit and nonprofit organizations have attempted to fill a void for services.  However, the population they propose to serve is far from homogeneous.  Rather it consists of young adults who share a tremendous desire to succeed and be independent, but have varying ability and skills to do so.   This means that a program needs to have both depth and breath in order to successfully serve its intended clientele of young adults with disabilities.

Some students with disabilities who enter college may be unprepared to manage their new-found independence and freedom.  They may struggle with navigating the new terrain of a college environment and be more fragile emotionally and socially. The fortitude of even the highest achieving student is tested when managing the ever-changing priorities of juggling classes, course work and living away from home.  For students with organizational or processing issues, the stress may be magnified many times over.

Programs that support students should be earnest and committed to the initial and long- term success of the student.  Students and parents may be vulnerable to programs that appear to make big promises and in the end, deliver less than desirable results.

Building a quality program takes time, expertise and commitment.  But to meet the rise in demand, programs can be put into place too quickly.  They may not have robust organizational structures and could fail to meet the divergent needs of their target population.  Others are too new to show any real or meaningful outcome data, so it becomes difficult to judge whether attending such a program would actually help a youth to become a successful adult.  The mission of any program selected should match the individual student’s expectations and needs.

Families who have pursued independent programming or services in the past for their children may have more familiarity with the specialty program or school selection process.  However, others that have used public school services or may be sending a young adult off for the first time will find they are navigating in unfamiliar terrain that can be overwhelming.  Investigation, planning and close examination of potential programs ahead of time can save costs and avoid buyer’s remorse in the long run.

PROFILE OF THE SERVICE PROVIDER

First, exactly what kind of program is being considered and what college(s) or vocational programs does it affiliate itself with?  Is the program embraced and supported by the faculty and administration of affiliated institutions?  How inclusive is the program with regard to the general population of students?  Are services centralized or decentralized and what other resources may be available such as counseling, writing centers or assistive technology labs?

Check that the associated colleges and vocational programs are ones that the student would actually want to attend.  Ensure that the classes that he/she may take (whether it be ceramics or physics) will be offered at the institutions affiliated with the support program.

It would be important to visit places like the office of specialized services of the associated  campuses and get a feel for how they deliver overall educational services and supports to students with disabilities.  Although both the Americans with Disabilities Act and Section 504 of the Vocational Rehabilitation Act of 1973 protect students in higher education, some schools and programs are much more willing to make accommodations for students with disabilities than others.  Ask to see printed materials that professors and staff are given to explain various disabilities and the rights and responsibilities of students.  Choosing a program that works with an institution offering relaxed time tables for completion of degrees or certificates may be a key element of success for some students.

Another factor to consider is how long the college support program has been operating as some programs are rapidly expanding to multiple sites.  Some of the sites may be more established, or offer a different mix of studies, or have a more inclusive student culture.  Families and students considering a support program should see how transparent the organization is in the way they operate. Try to get an understanding about the philosophy of the support organization to see how they actually view their work. Ask questions about the experience, training and stability of the staff working with students.   How is staff hired, trained and managed?  Is there a separate curriculum (for example on life or social skills) that is offered to or required of students?  What is the ratio of students to staff?

Find out if the support program is a for profit entity.  Contact the Better Business Bureau to see if there have been any complaints or actual lawsuits lodged against it.  If it is a non-profit, ask about the stability of the funding to run the program long-term.  In either case, get detailed information about the “real price” for attendance.  Think about additional costs that may not be covered in the price quoted in the brochures such as housing, additional daily living expenses and out-of-state tuition for the associated college or university etc.  Is there financial assistance for students entering the program or support applying for it? Has the program developed any additional links to public funding like the Department of Vocational Rehabilitation or Department of Developmental Services when appropriate?  A very clear picture should emerge about the financial commitment involved

APPLICATION PROCESS

How are student’s applications reviewed to make sure they are appropriate for the program?  Is their a mandate for complete disclosure to ensure the safety of all students?  What is the ratio of students who apply to students who are accepted? What is the general age range and make up of the student body?  What does the interview process like?  How competitive are the placements for the program?  Is there a minimum SAT score and/or other academic requirements to meet?  What kind of supplementary information is required as part of the process such as psycho-educational testing or proof of disability in order to be considered for admission?

How involved is the student in the process?  Does the support program require new students to review and agree to a standard of behavior?  Does it provide liaison to the college to ensure that the student’s disability is appropriately disclosed and that the student can avail of all the supports they are entitled to?  Are students expected to know how to explain their disability to staff during an interview?  If a student takes medication, are they expected to know what it is, what it is for and whether they manage their medication on their own?

As students move toward programming beyond high school, so much is expected or inferred and while the chronological age of the student may be 18, maturity and baseline knowledge about self-care may be delayed or emerging.  As part of the preparation or application process for college or added support program, families need to think through the level of independence for each student and the upfront knowledge and skill level required to manage classes as well as personal lives.

Students leaving high school may be surprised to find out that the special education process as they may have come to know it has ended and that they will now encounter a new system of accommodation only verses accommodation, modification and remediation.  It is important to know about (and obtain) the type of current documentation needed to show how a student’s disability may affect them.  Effort is no longer rewarded as much as results and students should be prepared to understand the shifting expectations in college.  Assessments that have been completed on behalf of a student need to include recommendations that trigger accommodations.

Another critical question in the investigative process is how is actual recruitment into the support program facilitated?  Are there student enrollment targets that sites may be trying to meet?  Do consultants, management or admissions staff get incentives for getting students through the door and for keeping them there? How likely is staff retained by the program to pressure students to stay in order to receive said incentives?  How much time do the admissions people spend in the actual program to know what is currently happening “on the ground?”  What information can they provide on the make-up of the group of students in the program?

Families should check to make sure that marketing efforts and materials presented actually match the specific services that are delivered.  Be weary of the brochure that looks too good to be true.  Some support programs spend a great deal on marketing efforts to woo students and parents can get caught up in the pressure to place their child.

CONTENT OF THE PROGRAM

Some programs offer a menu of services while others offer a more standardized model.  Whichever may be chosen, it is essential to know what is on the menu for a student.

Transitioning to a new school environment is huge for any young adult.  Therefore, the first issue that comes to mind is finding out what support exists for the student as he or she transitions into the setting.  Are there initiation or orientation processes? What kinds of additional services (if any) exist for any ongoing problems or concerns?  Does the program appoint a mentor or “go to” person for an individual student?  What is the activation process the student would use if they needed a specific support?  How available and approachable is staff to deal with student’s concerns?  How well does the student actually articulate their concerns, challenges or needs so that others can support them in their requests?

Beyond academic support, what is in place for assisting students who may have health issues, mental health struggles or a general breakdown in day-to-day functioning?  Does the program have a list of trusted allies to which a student can be referred?  What training is in place for staff to spot potential problems including abuses, aggression or violence?  Is staff trained to recognize when a student may be considering self-injury or suicide?

Is there programming in place for students to support those that are shy, socially awkward or isolated?  Are students encouraged and supported to join in the broader community?  Are activities mandatory and how are they selected?  What happens if a student is fearful to attend group activities?  How are disagreements or insults among students handled in a group?  How is leadership and compassion encouraged?  For particular students, social success may be far more critical than academics as a marker of present and future victories.

When a student falters or experiences additional trouble, what happens?  Are there measures in place to assist the student?  What happens if the student remains unsuccessful?  How willing is the program (and any educational entity related to it) to keep a student enrolled?  Is there assistance to look at other options if the current option fails?

Once a student has reached the age of majority, communication will (and legally should be) primarily be with the student and the educational entity and program.  Waivers must be signed by students if parents expect to be in the loop for exchanges of information.  Some programs want ongoing parent support and others may discourage it.  It is important to know the policies and expectations ahead of time.

If a student is going to be housed on campus or nearby, check out how solid, stable and conveniently located the housing is.  Is housing that is owned and operated by the program or institution itself offered?  What oversight is involved?  Who handles maintenance?  Are there significant leasing commitments to think about?  How are shared expenses for roommates handled?  Is there a student handbook that covers rules for co-existence including policies for drug and alcohol use?  What is the policy for having guests in the rooms or apartments including boyfriends or girlfriends that spend the night? What happens when roommate issues arise or how might an initial roommate selection process take place?  How are matters settled in a dispute?  If students are in dorms, what kind of resident adviser support might they get?

Equally important to note is if housing is in a safe neighborhood with nearby amenities.  Is it accessible to public transit and are students given any support or instruction to utilize whatever transportation options are available?  If the students are housed in apartments, is the general public living there as well and who makes up that population?  Families may want to look at crime and local police blotters to see if there has been violent crime reported in the area.  Is there limited access to student housing (and supports) during holidays and school vacations?

SERVICE DELIVERY

The next crucial piece to consider is how services are delivered.  Does the student self-select for services?  What if they need additional organizational support?  What kinds of external organizational supports exist?  Does someone regularly check in with the student including making sure that outside class assignments are completed, tutoring sessions attended? Is anyone tracking the overall well-being of the student?  Are there records to track services that have actually been rendered?

Ask program staff about the kinds of classes that students actually take.  Are they credit or non-credit classes?  How many students actually complete a degree? If students are taking classes at the support program’s site such as study, life or social skills, how is that measured in terms of success and building upon emerging or existing skills?  How is that reported and documented?  Is there an opportunity for fluidity in the program or is it more rigid in the way it delivers standard services?

If parents must sign a contract for services, be careful when reviewing and BEFORE signing.  Take care to see how iron-clad the contract is and whether there is an escape clause if the program is not successful or a failure to deliver promised services can be substantiated.  Can services be prorated?  Is there a varied selection of services to choose from?  Must a student sign up for all services if only certain services are needed? Is there a dispute resolution process in place for programmatic or contractual issues?

Last but certainly not least, a program should encourage a student with a disability to become the very best self-advocate they can possibly be.  Who will help them to understand the ongoing and changing process for asking for appropriate accommodations with regard to their classes or in the workplace if they are learning a vocational trade? Students with disabilities must access post-secondary programs that will steadfastly support them in their earnest efforts to succeed not only academically but in self-awareness and self-determination.

OUTCOMES FOR STUDENTS

Every parent wants to believe that they are sending their child off to a program that offers positive results.  With that in mind, what are the reported outcomes of graduating students like?  If it is a newer program, what kinds of grades and progress are students making that have entered the program?  How is success measured?  Some programs feel that getting a student integrated into the general scheme of college life and then letting them spread their wings on their own IS success.  Others may want to follow the student through the entire program.  Ask for references to gage other’s experiences with the program.  Check for blogs that might exist about the program as commentary can be quite sobering to read and content should be checked for its validity.  There are also a number of blogs and posts on social media that document local dorm and apartment living so bear that in mind when looking.

CONCLUDING THOUGHTS

Post-secondary, supported programs should create an atmosphere of authentic hope tempered with realism.  Many supported programs accept students well past the age of eighteen and there is time to prepare and amass more coping skills and maturity before utilizing a comprehensive supported program if one is actually needed.  But students must be ready and motivated before they commit to the program that appears to have the best set of services and supports to assist them in their unique journey toward personal independence and achievement.  Being a wise and knowledgeable consumer who has done the needed ground work to find a support program with integrity and commitment to its students will certainly be worth every bit of time and effort involved.

 

What can you do about your ASD child and Bullying? Sexual Abuse? Suicide Ideation? Wandering? Restraints & Seclusion?

As parents and educators of children and teens on the spectrum we have real worries in regards to the safety of our loved ones and students. Here is your opportunity to get some facts and strategies to decrease your worries.

Autism College in partnership with the National Autism Association (NAA) is presenting a series of free on-line conference webinars on Autism Safety and Crisis Prevention.  Topics to be addressed are sexual abuse risk reduction, bullying prevention, suicide risk, wandering, and preventing the use of restraints and seclusion. Don’t miss the opportunity to learn how to help support  the emotional and physical health and safety of your loved one affected by autism.

This series of interactive webinars  to be held in February will include presentations by  experts in the field of autism.  For those unable to attend all the webinars, there will be audio files and transcripts available for purchase after the conference. Register here for the conference.

Topics, presenters and schedule  as follows:

 Moderator: Chantal Sicile-Kira, author and founder of AutismCollege.com. The webinars will be interactive.  Attendees will have the opportunity to type in questions pertaining to the topic before and during each webinar. Chantal will introduce each presenter and moderate the Q&A opportunity at the end of each presentation.

 

Presentation Topic: How can parents reduce the risk of sexual abuse of their children (as adults or children)?

Saturday, February 11, 8:15 PST – 9:45 am PST

This presentation will focus on the basics all parents should know about sexual abuse among individuals on the Autism Spectrum. You know your child. How can you prepare your child for this particular danger? How can you prepare yourself to be not only their educator, but to be a part of an overall strategy to reduce the risk of becoming a victim? This presentation will discuss the basics of being a knowledgeable parent in the area of sexual abuse, including knowing the signs of possible abuse, designing a plan, and developing a protocol to use for all new persons who you will approve or hire to work with your family.

Presenter: Nora Baladerian, Ph.D., is a licensed psychologist in Los Angeles, California, practicing both clinical and forensic psychology . Since 1971, long before the crime victimization field as a whole focused attention on the needs of persons with disabilities, she has specialized in working with individuals with developmental disabilities. With an expertise in serving crime victims with disabilities and people charged with victimless sex crimes, she has successfully rallied victim/witness organization leaders, crime victims rights advocates, social service professionals, forensic psychologists, law enforcement, attorneys, members of the judiciary, and others to take up the cause of ensuring that the needs of society’s most vulnerable are not overlooked or otherwise forgotten. In 1986, as a proactive way both to bring together the growing number of those dedicated to this work and promoting greater cross-disciplinary dialog, she began convening national conferences on abuse of individuals with disabilities, hosting the 19th in 2005 with The Arc of Riverside County, and the First Online Professional Conference of its kind that same year. In 2008, the Attorney General of the United States presented her with the National Crime Victims Service Award in recognition of her pioneering efforts on behalf of persons with disabilities and in advancement of the mission of the Office for Victims of Crime of the U.S. Department of Justice.

Presentation Topic: The 3 R’s To Bullying Prevention for Students with Autism Spectrum Disorders: Recognize, Respond, and Report

Saturday, February 11, 10:00 – 11:30am PST

Bullying in the United States was once a silent epidemic which was endured by millions of children on a daily basis. The attitude “kids will be kids” was just part of normal childhood development. Today, bullying in schools is being recognized as a national problem for all students including children with autism spectrum disorders (ASD). A report from the Massachusetts Advocates for Children (Ability Path, 2011) found that nearly 88% of individuals with ASD are bullied in school. Dr. Ernsperger will provide research and specific strategies in order for parents and professionals to create a safe educational environment and follow the legal requirements set out by the federal government on bullying prevention for students with disabilities.

Learning Objectives:

  • Recognize the statistics of bullying
  • Recognize the warning signs of victims and stereotypes of bullies
  • Respond to the victims of bullies
  • Respond to bullies effectively
  • Teach anti-bullying social skills
  • Report bullying incidence in school settings

Presenter: Dr. Lori Ernsperger is from Henderson, NV where she is the owner of Autism and Behavioral Consulting. Dr. Lori received her doctorate in Special Education from Indiana University. She has over 25 years of experience working in the public schools as a classroom teacher, administrator, and behavioral consultant. She is also an adjunct professor at St. Petersburg College in Florida. Dr. Ernsperger currently provides staff development and conference workshops to school district personnel and parents.

Her workshops cover the following topics: Managing Problem Behaviors, Implementing Effective Instructional Methods, Designing Appropriate and Functional Data Collection Methods for the Classroom, Practical Strategies for Working with Individuals with Asperger Syndrome, and How to Get Your Kids to Eat. Dr. Ernsperger is the author of: Keys to Success for Teaching Students with Autism and Just Take a Bite: Easy Effective Answers to Food Aversions and Eating Challenges and Girls Under the Umbrella of Autism Spectrum Disorders.

 Presentation Topic: The Problem of Depression and Suicidal Ideation in Autism and Related Disorders

Wednesday, February 15,  6:00-7:30  pm PST

  • How often do we think it occurs?
  • How serious is it?
  • How do we distinguish serious symptoms from everyday frustration?
  • What are the risk factors? Are they similar to the general population, e.g. depression, loss, and substance use?
  • What should we look for?  Learning to read the cues.
  • When should we be very worried? Does the driven quality of those with ASDs make people more at-risk?
  • What can we do: in everyday life to help prevent depression; when people are sad;
  • How can we use the mental health system?  Are therapies or medications effective? Are there other ways to address depression in ASD?

Presenter: Dr. Joshua Feder is the Director of the Department of Research in the Graduate School of the Interdisciplinary Council on Developmental and Learning Disorders, and a voluntary assistant professor at UCSD School of Medicine.  Dr. Feder specializes in neurobehavioral medicine and application of DIR/Floortime with families and in schools.  He co-chairs the DIR/Floortime Coalition of California, and co-chairs the South Counties Autism Regional Taskforce (SCART) of the California Senate Select Committee on Autism & Related Disorders. Dr. Feder helped write the American Academy of Child and Adolescent Psychiatry (AACAP) Practice Parameter for Assessment and Treatment of Autism and Related Disorders. He reviews grants for the Organization for Autism Research (OAR) and the National Foundation for Autism Research (NFAR), is a primary clinical investigator for National Institutes of Mental Health (NIMH) and privately funded research in pharmacogenetics with the Child and Adolescent Psychiatric Trials Network (CAPTN).  Dr. Feder serves as medical director for SymPlay developing interactive technology and distance learning systems to support relationship based interventions.  He is involved in advocacy for family choice in evidence-based practice, and he is a frequent commentator and speaker for ValeriesList and for Autism College. Dr. Feder has a full time child and family psychiatric practice in Solana Beach, California.

Presentation Topic:  The Scope of Wandering, Prevention Strategies, and Resources

Saturday, February 18, 8:15 – 9:45 am PST

Incidents of missing children and wandering-related deaths are being reported in the news with frightening frequency. In the last three years, more than 20 individuals with autism have lost their lives due to wandering.  Preliminary data in the first IRB-approved study on autism-related wandering shows that half of children with autism have successfully wandered from adult supervision.  Families cite wandering as the most stressful behavior they face.  Drowning associated with autism elopement is a leading cause of death among children and adults on the autism spectrum. This presentation will discuss the scope of this issue, prevention strategies and provide resources for caregivers to keep their loved ones safe.

Presenter: Wendy Fournier is a founding board member and President of the National Autism Association.  The organization has been instrumental in bringing federal attention to the issue of autism-related wandering.  In 2010, Wendy and NAA Executive Director Lori McIlwain were invited to present on the wandering/elopement issue before the Interagency Autism Coordinating Committee at NIH, where they outlined the need for data collection, medical diagnostic coding, and federal health agency involvement. As a result, the committee has since implemented several of NAA’s recommendations. In addition to bringing awareness to the issue, NAA has developed extensive resources for the community including the AWAARE collaboration website and the Big Red Safety Box program.

Presentation Topic:  Preventing and Eliminating the Use of Restraint and Seclusion

Saturday, February 18, 10:00 – 11:30 am PST

The rising tide of Positive Behavior Supports has not lifted all boats, and many students with autism and related disabilities continue to be subjected to the use of restraint, seclusion, and other aversives as part of their education and behavior intervention plans. Successful reforms have taken place in health care settings, in nursing homes, and in programs treating mental illness, but many of our schools have not yet “gotten the word” that these techniques are inherently unsafe and can result in serious injury, psychological trauma, and even death. Evidence clearly shows that restraint and seclusion are not education; they are the failure of education. This webinar will help parents, advocates, and teachers understand how to work together to eliminate these highly dangerous and counterproductive techniques.

Presenter: Pat Amos, M.A., has been an advocate for people with disabilities and their families for over 25 years. She is a founder of Autism Support and Advocacy in Pennsylvania and the Family Alliance to Stop Abuse and Neglect, past president of the Greater Philadelphia Autism Society, a founder and past president of the Autism National Committee, has served as a member of Pennsylvania’s Developmental Disabilities Council, and is a Board member of international TASH.  She currently works as an Inclusion Specialist with the Youth Advocate Program’s Autism Institute.   Her involvement in the movement to prevent restraint and seclusion is longstanding, and she has worked with the national Alliance for the Prevention of Restraint, Aversive Interventions, and Seclusion (APRAIS) since participating in its founding in 2004.

Register here for the conference.