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Shortage of Programs for Adults with Developmental Disabilities; Guest Blog by Crawford Dedman, Special Education Consultant
Shortage of Programs for Adults with Developmental Disabilities
Lately I have been thinking a lot about what happens to students with developmental disabilities when they become adults and leave the education system.
In the province of Ontario, these students are able to attend school up to the age of 21. The reality is that many of these students will not graduate from secondary school. Some graduate and go on to the workplace or post-secondary education (i.e. apprenticeship, college and university programs). For these students, if they have the right supports in place they can manage this transition successfully. However, the students I am concerned about are the ones that do not graduate and have a difficult time transitioning to work and independent living.
Recently I had the opportunity to visit a day-treatment program for children and adults with Autism at the MukiBalm Treatment Centre in Toronto. The children and young adults at the centre have high-needs, including difficult behaviours and sensory needs that require high teacher and education assistant to student ratios. I had the opportunity to meet several students and staff at the centre and I thought they did a wonderful job in providing education and treatment to these students who are unable to attend their local community school.
Often our focus in education is trying to figure out a student’s special education needs early in Kindergarten to Grade 3. In providing treatment programs for young children with Autism, the focus is on getting them into an Intensive Behavioural Intervention (IBI) program before the age of 6 to obtain the maximum benefit from therapy. I as well clearly support intervening early and supporting children early in life. However, when you sit down and talk with dedicated professionals that work with these young adults you get a different perspective.
The perspective I heard is that government is not doing enough to support these children and their families when they become young adults. Waiting lists are long for day programs for young adults that are not able to go onto post-secondary education and/or work. I heard stories of parents having to quit their jobs to stay home and look after their child because they are over 21 and they are on a long waiting list for an adult based program day program.
I do believe that governments are going to have to face some decisions in the future of balancing their spending on programs both for children and adults. To fund one at high levels and then to fund the other at such low levels is a recipe for disaster in the future. Eventually these children will become the young adults that need meaningful programs, services and supports so they too can reach their full potential.
Special Education Consultant
The FDA has approved a clinical trial to implant a prosthetic hearing device (also known as the ABI) in children. The ABI will stimulate neurons directly at the human Brainstem, therefore bypassing the inner ear & auditory nerve completely. Different from a cochlear implant, the ABI can only be used on people who are deaf because their auditory nerve and cochlea are non-functioning or they cannnot benefit from hearing aids. If the patient wanted to qualify for a cochlear implant, their auditory nerve would have to had been intact.
To read more about the ABI go to this link
One (1) in fifty (50) children now diagnosed with Autism, up from one (1) in eighty-eight (88) in 2007. What can cause such an increase in such a short a period of time? Is it more of an awareness? An epidemic? Better testing? Or is it in fact over - diagnosis?
As we know, Autism is a spectrum disorder, which means a person can have it and be on the very low end or go all the way to the very high end of the spectrum.
I've worked in a District 75 environment (not naming names) at the beginning of my career with let's call them for now mostly high functioning children where I was pressured to do things and write reports that I believed to be false and not entirely accurate . Why did I do those things? Believe me, I argued and cried. I knew it was wrong. But it was my first job, I was bullied, I left after 2 months and learned a very valuable lesson.
The improper reports on the Speech and Language side of things, consisted mostly of 4 and 5 year old children who when tested/evaluated mostly passed via the CELF-4 and the PLS -4. When reporting the passing results to my Supervisor, not only was I asked, but at times she took over and re-wrote sections of my report to creatively make it appear as though these children had "difficulty paying attention" in order to keep these children in Speech Services, keep them in Early Intervention and keep them with a diagnosis of Autism. By keeping the child in that or any District 75 school, that school continues receiving their funds on that childs' behalf. I was informed by my superior that it was not such a big deal b/c by the time the child "aged out", most of these children would lose their diagnosis...
Can situations like the one I described above be contributing to the over diagnosis of Autism?
We also need to consider the change in the diagnostic criteria not too long ago.....
You can read more about this article at Reuters.com
A special blood marker has been found enabling further understanding of potential gut linked environmental factors to autism. The results, published in an article in Medical News Today, could create blood tests for early screening of the condition.
The findings came from a clinical study by researchers from Western University and the University of Arkansas, and were published in the Journal of Translational Psychiatry and lead by Drs. Richard Frye and Stepan Melynk of Arkansas Children’s Hospital Research Institute. The researchers found evidence of unusual energy metabolism among a subgroup of kids with autism.
You can read the entire article here on Medical News Today http://www.medicalnewstoday.com/articles/255637.php
I found as a parent the joy and importance of creating pleasant moments within the everyday things we do. Did you ever experience simple activities turning into extremely unpleasant experiences? Standing in line, sitting at dinner, visiting family and friends, or going to a park, etc. could become so stressful.
I found these helpful hints to be “rule of thumb”:
One, leave at the height of fun and that way everyone is coasting on a good sensory cloud, no one is tired, and most prepared to be organized and listen well. Don’t spend that extra hour, more is not necessarily better. You don’t have to do everything in one day. This rule was such a friend to me with my children as well as children I had the pleasure to work with. I experienced children with and array of sensitivities, ADD behaviors, developmental delays, and all sorts of “typical developing” personalities and behaviors. They all do better when organized, calm, happy, and alert.
Secondly, I found having a bag of “tools” whenever I left the house was so helpful with my own children especially when sitting at a restaurant, waiting in line, or even taking a ride in a car. Children’s singing tapes/CDs (now you can tell how long I have been a parent!) are awesome and so much fun for all, visual and proprioceptive fidget activities that don’t have small parts to lose, coloring, even stretchy gummy action figures. What does your child enjoy or need most: visual, oral, proprioceptive, or tactile sensory input? I knew some children that loved puzzles so bring along puzzles. In some cases something more active works better (however not over stimulating). Books are fabulous too!
Weighted blankets, a favorite snuggle toy, are great in the car for the ride home.
A little preparation goes a long way.
I really enjoyed it so much, I miss having small children every single day.
Think a little like a child, it’s a wonderful state of being!
To find out more about Susan Donohoe and her products Kozie Clothes visit her website here www.kozieclothes.com
What are the benefits of Compression Clothing? Weighted Vests & Blankets? ; Guest Blog by Susan Donohoe @ Kozie Clothes
I'm passing along the following information regarding the upcoming Future Horizons Autism/Asperger's Conference in Long Island, NY on Friday, February 8, at the Melville Marriott Long Island, featuring Dr. Temple Grandin, the noted scientist who has autism and the author of The Way I See It: A Personal Look at Autism and Asperger's; and Dr. Jed Baker, director of the highly acclaimed Social Skills Training Project, and the author of No More Meltdowns: Positive Strategies for Managing and Preventing Out-Of-Control Behavior and The Social Skills Picture Book.
Throughout the conference there will be an extensive resources/book table available, as well as excellent networking opportunities with other local parents/caregivers, therapists, counselors, special ed teachers, psychologists, etc., within the various ASD/SPD related communities.
Future Horizons is also offering a 10 percent discount off of their regular conference prices for this conference (use coupon code TGCONF when registering). Per Future Horizons, this special discount can't be combined with any other discounts or offers.
For more information about the conference, CEUs, to register, etc., you can visit Future Horizons' website at http://www.fhautism.com.
Article taken directly from the FDA website:
Go here for the direct link to the FDA website:
The Food and Drug Administration (FDA) wants parents, caregivers and health care professionals to be aware that infants of any age may face an increased risk of developing a life-threatening condition if fed a thickening product called SimplyThick.
Since May 2011, the agency has identified 22 infants who developed necrotizing enterocolitis (NEC), a condition in which tissue in the intestines becomes inflamed and dies, after being fed SimplyThick. Seven of those infants died.
Further study is needed to determine if there is an actual link between consumption of SimplyThick and the development of NEC. But, FDA wants everyone involved in the care of a baby to be aware of the potential risk before deciding whether to feed SimplyThick to infants of any age.
SimplyThick is a brand of thickening agent—available to consumers and medical centers—used to help manage swallowing difficulties. It is sold in individual serving packets as well as in 64-ounce dispenser bottles, which can be purchased from distributors and local pharmacies throughout the United States.
Benson M. Silverman, M.D., director of FDA's Infant Formula and Medical Foods Staff—himself a neonatologist—explains that the thickening agent is added to breast milk and infants' formula to help the premature babies swallow their food and keep it down, without spitting up. The product is also used in older children and adults with swallowing problems caused by trauma to the throat, he notes.
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The ProblemFDA first learned of bad side effects possibly linked to SimplyThick on May 13, 2011. Silverman says he was alerted by two reports in FDA's MedWatch Safety Information and Adverse Event Reporting Program. He followed up with the physicians who filed those reports and later with a network of other neonatologists, doctors who treat newborns in need of special care.
Karl Klontz, M.D., a medical officer in FDA's Center for Food Safety and Applied Nutrition, says the scope of the problem soon became apparent. At the time, the agency was aware of 15 cases of NEC, including two deaths, involving premature infants who were fed SimplyThick, reportedly as directed, mixed with mothers' breast milk or infant formula products. The mixture was fed to infants for varying amounts of time.
In May 2011, FDA advised against feeding SimplyThick to infants born before 37 weeks gestation because it could cause NEC. (Gestational, or post-menstrual, age is calculated from the first day of the last menstrual period, which is about two weeks before ovulation.)
After issuing that warning, FDA conducted an extensive review of reports of health problems potentially tied to SimplyThick. Its findings, published recently in The Journal of Pediatrics, included the discovery that among almost two dozen infants ultimately found to develop NEC after ingesting SimplyThick was a baby born at full term—not a premature baby. The other 21 infants, however, were born prematurely.
The infants ranged from about 24 to 48 weeks post-menstrual age when they became sick. (An infant who is 24 weeks post-menstrual age is about four months premature.)
Half of the infants developed NEC in the hospital, while half developed the condition at home following discharge from the hospital. Fourteen required surgery.
Silverman and Klontz are among the authors of the report that concluded that further study is warranted to establish if there is a link between NEC and SimplyThick and other thickening agents. In the meantime, says Klontz, parents should contact their child's health care provider before using SimplyThick.
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Symptoms to Watch for
You or your health care professional may report side effects related to using SimplyThick to FDA's MedWatch by:
Updated Sept. 18, 2012
For more information on Simply Thick