Communicating with First Responders

A week ago, my daughter was in an automobile accident on her way to the zoo. She and her staff did not appear to be injured, according to the report by the staff member who called to inform me of the accident. The police were not on the scene, and there was another automobile involved, so I called the police from home to report the accident and get help on the scene as soon as possible. Shortly after, my staff called me back and told me that the EMT's wanted to transport my daughter to the hospital to be examined because she could not respond to questions regarding her well-being. I determined that my daughter was not upset or crying, or indicating distress in any way. The airbags in the car had not deployed, and my daughter was seated in her restraint harness in the third row of our Suburban, while the staff had been located in the first and second rows and were fine. I asked to speak to the EMT, and asked him to allow my daughter to remain in the vehicle with her staff until I could pick them up. He said that he would have to take my daughter to the hospital because her staff did not have power of attorney to make decisions regarding her care, and because he could not verify that I was who I claimed to be. I told the EMT where to find the First Responder form that I had ordered from the autism society, and that was located in the fanny pack that always travels with my daughter and her staff. The form lists me as parent and legal guardian, and provides my contact information. I suggested that he call me back on the phone number listed on the form to verify who I was, but he would not listen. I explained that he would increase the chances of an aggressive tantrum that could result in injury to my daughter or others if he restrained her in an ambulance and that she was safer in her own car in her safety harness with familiar staff. I was only a 25 minute drive away from the scene of the accident. He refused to follow my instructions and insisted that my daughter and her staff leave the vehicle and travel in the ambulance to the nearest hospital and threatened to leave the staff behind if they did not come immediately. They were not permitted time to return to the car for my daughter's communication device, and had to leave it behind to be retrieved later. Ironically, when I arrived at the hospital, the nurse allowed me to refuse medical care for my daughter and to take her home without being required to show any proof of my identity or relationship to my daughter. She was, and is, fine. If I leave town, I always leave my daughter's staff written permission to make medical decisions for her in the event that I can not be reached. I am hesitant to do that when I am nearby. The First Responder form that is always with my daughter should have allowed anyone on the scene to call the phone number provided to assure them of my identity. How would I even know that the form existed and where to find it if I did not put it there? I think that these first responders put my daughter at greater risk by refusing to use simple common sense. I am not sure what the solution to this problem is. I will write a follow up post when I figure it out. Feedback from anyone who is familiar with this problem would be welcome. I really thought I had adequately prepared for emergencies by ordering and completing the form that is offered by the autism society, but when it was actually needed, it did not help.

Treatment Helps Non-Verbal Autistic Children to Speak

If you have a child who has PDD and is non-verbal, this article might be of interest to you. I have copied it for your information. The original article was printed in Health News. "Study tests novel treatment developed at BIDMC BOSTON -- A new treatment can help nonverbal children with autism to develop speech, according to a proof-of-concept study led by researchers at Beth Israel Deaconess Medical Center and reported in the September 29 issue of the journal PLoS One. Known as Auditory-Motor Mapping Training (AMMT), the novel treatment builds on the observations that children with autism – who typically struggle with communication, as well as social interactions – often respond positively to music. Autism affects an estimated one in 110 children and one in 70 boys. ”Communication deficits are one of the core symptoms of autism,” explains first author Catherine Wan, PhD, a researcher in the Music and Neuroimaging Laboratory of BIDMC’s Department of Neurology and an Instructor of Neurology at Harvard Medical School (HMS). “It has been estimated that up to 25 percent of all children with autism are nonverbal, but surprisingly, not much is out there treatment-wise that directly helps these children to speak.” The AMMT treatment uses a combination of singing (intonation) and motor activities to strengthen a network of brain regions that is thought to be abnormal in children with autism. “We developed AMMT, in part, because another intonation-based therapy, known as Melodic Intonation Therapy, had been successful in helping stroke patients with aphasia recover their ability to speak,” adds senior author Gottfried Schlaug, MD, PhD, Director of the Music and Neuroimaging Laboratory at BIDMC and Associate Professor of Neurology at HMS. After eight weeks of AMMT treatment (five days per week), the six children in the proof-of-concept study -- who ranged in age from six to nine and were previously completely nonverbal -- were able to approximate whole words and phrases. The children could also generalize their speech production to words that were not practiced during the therapy. “Noticeable improvements in speech were seen as early as two weeks into the treatment,” explains Wan. “More importantly, the improvements lasted as long as two months after the treatment sessions ended. “In the future, we plan to compare the effectiveness of AMMT with a control intervention,” she adds. “For these nonverbal children to say their first words is especially gratifying for parents, and represents a critical step forward in their language development.” This study was supported by The Nancy Lurie Marks Family Foundation and the Deborah Munroe Noonan Memorial Research Fund. In addition to Wan and Schlaug, study coauthors include BIDMC investigators Loes Bazen, Rebecca Baars, Amanda Libenson, Jennifer Zuk and Andrea Norton, all of the Music and Neuroimaging Laboratory; and Lauryn Zipse of the MGH Institute of Health Professions. BIDMC Contact: Bonnie Prescott Phone: (617) 667-7306 Email: bprescot@bidmc.harvard.edu "

Dynavox Maestro

I was a graduate student in 1996, and was in an elementary school in Arnold, MD to do an observation of a 4th grade class. In that class was a girl who had no ability to speak. When she first came to the school for mainstreaming, she could only scream. When I arrived for my observation, she had been provided with a Dynavox communication device and had learned to use it. She could carry on conversations with her classmates and her teacher using her Dynavox and no longer needed to scream. I thought then, how wonderful it would be if V had access to something like that. It was out of reach for us at that time. The device is very expensive and, although medicaid would pay for the device with proper paperwork, V did not have medicaid at that time. It is possible that her private insurance would have covered it, but a speech language pathologist would have needed to write a lengthy report to justify the need for the device. V was not making great progress with her speech therapist at that time, or really at any time that she was in school. Years later, I asked the school speech therapist about pursuing the Dynavox. Her response was that V needed to master less complex communication systems before she would be ready for it, and the matter was dropped. Without her support, it was impossible to get the funding necessary to obtain the device. However, in my mind, providing V with such a device that would allow her to say what she wanted or needed to say, was the ultimate goal toward reducing her frustrations. Having Lauren, our current speech therapist, begin to work with V 2 and a half years ago was the beginning of making real progress toward that goal. Lauren has been building V's picture vocabulary weekly and teaching her how to use the pictures as a means of communication. Finally, V had someone who believed in her ability to use something more advanced to express herself and we began the application process to get V her own Dynavox Maestro device. Lauren completed the report that is required by Medicaid, which confirms the need for the device and the ability of user to access the device. I had V's primary care physician write the prescription for the device, as durable medical equipment, and the Dynavox representative put together the application packet and sent it to Medicaid for approval. The process began in July, and we had our device by the end of September. The day the Maestro arrived was a really exciting day. I had waited 15 years for my daughter to have access to this. We are just at the beginning of this process now. Lauren and I have to learn to use this device and personalize it for V. V's tutor and her support staff will have to be trained to use it with her has well. We can't get our initial training meeting with the Dynavox representative until Oct 25, so we are trying to figure out how it works on our own for now. There are instruction manuals, tutorials on the device and also on the Page editing software, and recorded online classes on the Dynavox website. There is also a technical support phone number. I have found all of the resources helpful so far. I was able to get through to a human being quickly at the tech support phone number for assistance with downloading the page editing software. Courtney, our sales rep at Dynavox, has responded to my email questions quickly. Because of page editing software, Lauren and our tutor can prepare pages that they need to work with V from their home computers, save the work to a flash drive, and plug it in to the Maestro when they arrive at my house for their session with V. Right now, Lauren has the Maestro at her house to work with it, but I can still use the page editing software to personalize Vs pages at my computer. We have a lot to learn about this powerful tool, but I am hopeful that it will allow V to speak to us the way she wants and needs to. She will have to learn how to navigate her way through the device, but she learns what she wants to learn pretty quickly. She has shown promise with similar software on the ipad. The accessories include a carry case with a should strap to protect the device and minimize the chance of dropping it, a 9 hour rechargable battery, and a keyguard so that her resting hand won't disable the touchscreen. I am excited to see what a difference this device might make in V's life!

Robots Lend a Hand

I read an interesting article today about the use of robots in the classroom, for the purpose of helping autistic children learn to socialize with other children. Click on the word "share" below to read the article.

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Stem Cell Treatment Trials for Autism

Today, I have been doing a little light reading about stem cell treatment and studies in other countries.
The following article discusses a treatment and trial in Greece:

"Wednesday, April 14, 2010
Autism and Experimental Stem Cell Treatment
Attached is part of a PR Web Press Release for a clinical trial application being submitted to Greek authorities by AdiStem Tehcnology. It indicates that a group of doctors in Greece are preparing a protocol for submission to the Greek Ministry of Health for an official clinical trial of stem cell treatment on children with autism spectrum disorders:

The stem cell technology developed by AdiStem for the past 5 years has been used and trialed by doctors around the world for the treatment of type II diabetes and its complications, osteoarthritis, and cosmetic medicine. Physicians in Greece approached the company recently with the intent to treat Yannis, the son of Dr. Solomos, a cardiologist. Yannis, a 9 year old boy, had been diagnosed with autism but not responded to standard treatments.

An experienced doctor, the father, Dr Solomos, carefully reviewed the case studies of other children with Autism who had received the AdiStem stem cell treatment in Europe and Asia, and was convinced of its safety and potential for improving the condition of his son. With the help of experienced pediatric surgeons Yannis underwent an hour long mini-liposuction procedure at Kratiko Nikaias Hospital in Athens in which 200cc of abdominal fat was harvested. The fat was dissolved, the stem cells isolated and then activated, and over 100 million cells were returned to Yannis through a standard intravenous drip. Yannis was discharged on the same day.

Just one month later, his father was astonished to hear Yannis talking to him on the phone for the first time. Dr. Solomos explained: "my boy has simply not been able to speak to me on the phone before". Asked if he’d noticed any other changes, he replied: "His school tells me his attention has improved. We experience him nearer to us and he feels us. I see a change in his ability to connect with other children. He plays with them now, which he used to avoid. He has also become more interested in letters and numbers". (This interview with Dr.Solomos was recorded on video and can be viewed at "www.adistem.com/application/autism.htm").

Present during the treatment, Dr. Koliakos, Associate Professor at Aristotle University and President of Hellenic Research Foundation Stem Cell Bank pointed out: "One month after the therapy Yannis has shown remarkable progress according to his father's observations. The child will be reevaluated by pediatric psychiatrists 3 months after the therapy to measure the extent of progress in his condition and to decide if the remainder of his stem cells, presently stored in liquid nitrogen, should be administered".

Dr.Kolaikos continued: "We're convinced about the safety of intravenous adipose stem cell therapy – if supported by accredited facilities – and our team has now applied for a large formal clinical trial on autism using AdiStem's stem cell protocol here in Greece".

Terry Grossman, M.D., stem cell researcher from Golden, Colorado said, "I was present to observe 9 year old Yannis undergo the stem cell procedure at the Kratiko Nikaias Hospital in Athens. Further studies are needed, but it is possible that stem cell therapy will soon be available as a powerful new tool to help children with autistic spectrum disorders."

There is much controversy surrounding most aspects of autism spectrum disorders including issues concerning treatment and research involving children. In this case the PR Web press release states that a trial was run with a child whose father, an experienced medical doctor, consented to his participation after reviewing case studies involving other children with autism who had received the treatment. The father, a medical doctor, also provide his observations which indicated substantial improvement in his son's condition. The procedure was performed by experienced pediatric surgeons and is vouched for by a Greek professor and researcher as being safe when administered at a proper facility. In addition to the father's observations the child will be seen at follow ups by pediatric psychiatrists for further measurement of his progress and for a determination of whether to continue with the treatment.

The procedure itself was observed by an American stem cell researcher/doctor who says further study is needed but that but it is possible that stem cell therapy will soon be available as a powerful new tool to help children with autistic spectrum disorders. The research team involved has applied for a large formal clinical trial on autism using AdiStem's stem cell protocol.

It will be interesting to see what comes of the Adistem application and formal clinical trial results. This father of a severely autistic 14 year old boy has insisted that my son receive only evidence based interventions and I will not depart from that principle. But I do not close my mind to new interventions either if they are subsequently supported by a strong evidence base. If responsible studies conducted safely, produce credible results and provide reliable evidence of new interventions that could help my son then I would want, in consultation with trusted professional advisers, to consider new interventions for his benefit.
It remains to be seen whether the AdiStem trials will provide such evidence but in the meantime this father of a severely autistic son will keep an open mind on the subject. "

Are clinical trials being conducted? Yes. Copy and paste this link to see a report on an NIH study that has been completed in China. I would like to know what the results of this study were, but this website does not give them. http://clinicaltrials.gov/ct2/show/NCT01343511

I have viewed a number of interviews of some parents in the U.S. who have taken their children to Costa Rica and Panama, and paid $15,000 for stem cell treatments there in clinics. Another parent in Australia took her son to China for the treatment and paid $35,000 for it. Desperate parents who have found relief for their children nowhere else are taking their chances now, rather than waiting for the evidence of clinical trials.

So far, my reading has only uncovered anecdotal reports by families. I will be watching to see what the studies reveal about the true benefits or lack thereof of this treatment.

Anesthesia for Dental Care

Dental care for a person with a developmental disability can both ineffective and a nightmare without the use of anesthesia. This is an important issue and needs to be addressed.

"Dentists want insurers to pay for anesthesia for patients with special needs
Published: Friday, June 17, 2011, 6:22 PM
By DAVID WENNER, The Patriot-News

Dr. Dennis Charlton, Pennsylvania Dental Association president, speaks at a gathering of PDA members at the Capitol Rotunda on June 14. 06/14/2011 DAN GLEITER, The Patriot-News
Autism can cause a mouthful of pain, and worse. That’s why Pennsylvania dentists want a state mandate to require health insurers to pay for general anesthesia for patients with mental disabilities that prevent them from tolerating dental work while awake.
The mandate is contained in a bill sponsored by state Rep. Stan Saylor, R-York.
It would apply to all children 7 or younger, and to older people with conditions, such as autism, Down syndrome or developmental disability, who otherwise wouldn’t be able to undergo dental work.
One advocate for such patients is Dr. Bill Spruill, a Carlisle dentist. Spruill is a former president of the Pennsylvania Dental Association, which has pushed for the mandate for years. “This is a small group of patients, with critical needs, who can’t be treated in a regular dental setting,” he said.
Without it, it’s impossible for them to undergo dental work or, for some, to even receive preventive care such as an exam and cleaning. Typically, these patients experience fear, extreme anxiety or agitation that can’t be overcome with standard pain- or anxiety-control measures available to dentists.
Spruill argues that denial of anesthesia, which can cost from $500 in an outpatient facility to $3,000 in a hospital, amounts of denial of medial care, since many patients can’t afford to pay for anesthesia on their own, and thus go without the dental care.
Spruill said that, in 31 years as a dentist, a health insurer has rarely, if ever, paid for general anesthesia for one of his patients.
However, the medical director for a local health insurer, Highmark Blue Shield, said Highmark does pay for general anesthesia for some dental patients.
Those include patients with disabilities that warrant them being under general anesthesia for the dental work, as well as others with extreme anxiety or sensitivity to pain, or dementia, said Dr. Andrew Bloschichak, the senior medical director for Highmark.
He said Highmark pays for general anesthesia when it’s deemed medically necessary. But it has “no blanket policy” regarding the coverage, he said."

Supporting Social Connections for Adults with Developmental Disabilities

I just read this story about an organization in Georgia, and I am wondering if a similar program exists in the D.C. area. It would be wonderful if it did! This is how people become a part of the communities that they live in and have full and meaningful lives. Please post a comment if you know of something similar to this:

The original story was found at http://www.gwinnettdailypost.com


Hope on the Horizon
Hi-Hope Service Center provides vital support to individuals, their families and the surrounding community.
Posted: 11:03 AM Jun 15, 2011
Reporter: By Susan Boland Butts


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Hi-Hope Service Center provides vital support to individuals, their families and the surrounding community. Hi-Hope’s mission is to support adults with disabilities by building and sustaining individual independence. Supporting adults to build social connections is an important key to increasing individual independence. Thanks to the investment of volunteers there is hope on the horizon for many adults with developmental disabilities.

Here are just a few of the volunteers who are assisting adults with developmental disabilities in building social connections.


Hiroko Nishiguchi volunteers at Hi-Hope on a regular basis in Hi-Hope’s art shop. Using her creative skills and whatever unique, and often leftover, supplies might be available she educates adults on shapes, colors, and structure. Some amazing sculptures have resulted. Claude Waters cleaned out his garage and came to Hi-Hope with armfuls of beautiful silk flowers. He spent two hours exposing individuals to the art of flower arranging. Linn Honeycutt comes weekly to Hi-Hope and accompanies a group of individuals as they deliver Meals on Wheels. His engagement allows them to experience the joy of regular volunteering.

Hi-Hope’s weekday program and residential programs are places where individuals are educated about social connections that may be of interest to them. We have opportunities to educate individuals about a variety of topics which support their identification of activities that are important to them. For example, physical fitness, cooking, gardening, literacy, history, volunteering, arts and crafts, recreational games and music are topical areas of interest. Could you share your knowledge and experiences about one of these or another area that is important to you? If so, you just might spark an interest and make a friend.

Once a potential area of interest is identified, we seek to expose individuals to those activities so they can decide if they enjoy spending time in that pursuit. That may happen on our site, or in a community setting which would support brief opportunities for an individual to see what it is like to actually do that particular activity. Could you introduce an individual to your hobby? Show them how to engage in what is so important to you? If so, you just might broaden their life experiences and deepen a friendship.

Once an individual has been exposed to an activity, they decide whether they would like to experience that activity on an ongoing basis. Social connection experiences are best when an individual is included in opportunities in integrated community settings. Would your group, club, class, or family welcome an adult with a developmental disability who shares your interest? If so, you just might find even more meaning in your activity and make a lasting friendship.

If you are interested in sharing your knowledge, skills or connections with an adult with a developmental disability, please contact Hi-Hope at 770-963-8694 or go to www.hihopecenter.org. Hi-Hope Service Center – cultivating community and opportunity for adults with developmental disabilities — 50 years strong and growing.

Susan Boland Butts is executive director of the Hi-Hope Service Center.