Technology Can Save a Life

One of the worst fears of any parent is that their child may go missing one day. That fear is amplified when the child is ambulatory, unable to understand danger, and is non-verbal. This article discusses one way that parents can address those concerns. "Unique Piece of Technology Could Save Lives By: Hollie Hojek hhojek@kcautv.com Trey Michaels is your average 8-year old boy, who loves movies, computer games and his IPad. But unlike many other kids his age, he doesn't just enjoy unique technology, he wears it. It's called a life savor bracelet. It's used to help find someone in case they runaway or get lost. And that's exactly what happened to Trey Michaels about two years ago, when he wandered off in a shoe store. Although he was found, just minutes later, Trey's parents decided they weren't going to take another chance, especially when it came to their son, with autism. "You hear about those kids who run away... And we just think thank goodness we have this bracelet for Trey because you just never know," said Trey's mom, Shana Michaels. Twenty-four hours a day, Trey wears the bracelet around his ankle. It's fitted with a personalized tracking device, and batteries that they check every morning. Now, if Trey were to runaway, all his parents need to do is call 911 and local authorities immediately begin tracking his whereabouts. "If he were at school surrounded by fields... Or daycare... Right by the street and take off in any direction he could be gone.," said Michaels. Not only that, with his autism, Trey doesn't always have the ability to speak. We could be calling for calling, and he wouldn't answer us, or he could be injured somewhere and he might not make a sound," said Michaels. But with this bracelet, he's got a little bit of a safety net, and a little less worry from mom and dad. "Before without the bracelet, if Trey were to runaway... Whew... I'd probably be a ten on a scale of ten, but now with the bracelet, I'd probably be an eight, we'd still be very concerned, but at least we know there's some steps we can take to be proactive.," said Trey's dad Tony. And this little piece of plastic is one of them, no matter how many more close calls Trey runs into. For those involved in Project Lifesaver, they are having a training session on November 16th and 17th." If you would like to look into this further, go to http://www.projectlifesaver.org/ If you are in my local area, Montgomery County, MD, then this is what appears on our county page: Divisions/Stations — Project Lifesaver PROJECT Providing a rapid response to missing persons and peace of mind to caregivers and their families. LIFESAVER Home | Application Process | FAQ | Useful Links | News/Resources | Contact Us Project Lifesaver is a proactive response by the Montgomery County Department of Police to identify those individuals within the community who have a propensity to wander and not be able to return home. Caregivers of individuals that have a propensity to wander due to a diagnosed medical condition such as Alzheimer's, Autism, or Down Syndrome are provided with information and tools to prevent episodes of wandering. If necessary, the individual may be outfitted with a trackable RFID bracelet. Continue to program description

Patience

Last week we had a home visit from Natalie, Val's trainer at Fitness for Health. With Val's Suburban in the shop for repairs, I was nervous to take her 30 minutes each way in my little car in case she became agitated during the trip. Although we had to pay for the travel time for Natalie, it was an opportunity to work on Valerie's tricycle riding skills. It was a beautiful day for November and perfect for doing an outdoor activity. We got the trike out of the garage and took it across the street to a protected side road that gets very little traffic. Val walked out of the house nicely and willingly got on the trike. She steered as we pushed, and all went well until we came to the part of the road where a noisy truck was parked. Something about that truck and the sound it made, upset Valerie and she got off the trike and began to have a tantrum in the street. I went back to our house to get my car and drove it to where Valerie was sitting in the street, which motivated her to get up and climb inside my car. I drove back into my garage, closed the garage door and smoothly transitioned Valerie back to her room for indoor recreational activities. Afterward, Natalie and I chatted about how things had gone with our first attempt at tricycle riding. She was happy that Valerie got on the bike and had stayed on it for several minutes until the distraction of the truck. Valerie loves working with Natalie because Natalie is happy for whatever Valerie is willing to give to an activity. Natalie respects Valerie's feelings, interests and limitations on any given day. Some people respond to being pushed, but Valerie pushes back. Everything is on her terms, at her pace, and nothing can be forced without negative consequences to all concerned. I agreed with Natalie, that it was a positive start, and keeping Valerie's experience with Natalie a positive one is critical to her continued willing cooperation during future sessions. I have learned to expect progress in any area of Valerie's learning to take several months, if not years, of work on a weekly basis. Those people who have been successful in their work with Valerie have had to have faith in Valerie and themselves. Those who are in a hurry to get results and who want to be in charge become discouraged before they see what she is capable of. It took over a year to get Valerie to stay on a horse for more than a few minutes during therapeutic riding sessions. It took about 5 months for our speech therapist to get Valerie to want to work with her for a full hour most sessions, and it took about the same length of time for the tutor to get her engaged in work for most of an hour long session with hardly any behavior outbursts. Valerie is kind of contrary, like her mom. When she understands that no one is going to force her to do more than she wants to do, then she becomes more willing to participate for longer periods of time. She becomes happy to see a therapist who respects her wishes, lets her take a break or move on to another activity if she wants to stop. Then the the therapist, staff and I begin to see what she can really do, and we see skills grow. Building rapport and trust first is critical to making progress with Valerie. Keeping things low-pressure and relaxed is important to making progress with her. If Valerie is using all her energy to fight for control, she isn't learning anything. Natalie said, "I wish you could talk to some of our parents at Fitness for Health. Some ask me what progress was made after one session. I was just happy that the child was focused during that session." She and I understand that progress takes time and patience when working with a person who has special needs. She is a perfect trainer for Valerie because she appreciates what Valerie gives to each session, and if that is only 30 minutes of work without any inappropriate behaviors, even though the session is for one hour, so be it. Valerie leaves happily, and is that much more willing to come back again the next week and work for 40 minutes because it was fun last time. I would say to parents who expect quick results, that it will not happen on your time schedule but it will happen if you are patient, accepting, and respectful of your child. A therapist can give your child what they need to move forward if you take away the pressure for measurable results in a specific period of time. Take the pressure off of your child and the therapist and let it take as long as it takes. I came close to giving up Val's sessions at Fitness for Health before Natalie became her trainer. Valerie was spending most of her sessions there fighting with other trainers and her support staff to leave the place almost as soon as she arrived. It had become a negative experience for her and at times she wouldn't even leave the car to go inside when staff arrived with her. Then there was fire in the building where the sessions took place. The sessions were cancelled for about 7 weeks as a result of repairs. When she returned, it was after a home visit by a new trainer, and the facility had moved upstairs and had a different layout. We had some tantrums during the first couple of sessions with Natalie, one really rough one, but things improved really quickly and our last session at the facility was 50 minutes of participation with no behavior problems at all. We started slowly, with only once session a week, but now things are going so well that I am ready to increase her schedule back to two sessions a week, which she had before the fire. I am thankful to the therapists and trainers who have worked with Valerie when they did not see progress, but believed that Valerie had it in her and believed in their own ability to find a way to bring out her potential. They didn't give up or become discouraged and it paid off for them and for her.

My Daughter Addressed Me!

Last night, sitting together on the family room sofa, and watching a little nature show, my daughter turned to me and said,"Mom, shish?" The "shish" is her approximation for goldfish crackers. She wanted some. The first word surprised me and my husband. She has said "Mom" for years, usually to someone else, to ask to see me. "Mom?" has always been a request that meant "I want Mom." But, last night, she said my name to me, to get my attention, so I would know she was talking to me, and that is new. I can't remember another time that my daughter has addressed anyone, including me. I don't know if this is the result of her communication growth through speech therapy, or just a one-time thing that will never be repeated. I liked it, and I hope it happens again. It is a small thing, but it meant a lot to me.

Follow Up to Communicating with First Responders

I called Frederick Memorial Hospital yesterday to find out which ambulance was responsible for transporting my daughter. With their help, I called the number that they provided and left a message for someone to call me back to discuss what happened. My goal was to determine what went wrong, and what if anything I could do to prevent an EMT from overriding my authority in the future. I received a callback last night from a man who supervises the EMT supervisors, and we had a very helpful discussion to both of us. For my part, he suggested that I ask to have an EMT supervisor involved if I am ever in a situation again where an EMT will not listen to me. He agreed with me that the EMT's did not have to transport my daughter to the hospital if she showed no signs of injury, just because she was not competent to decline transport. He told me that if I were on the scene of the accident, I would not be asked to show ID, and so the issue of proving my identity should not have been a big concern over the phone. He told me that someone had asked to provide training regarding care of patients with autism to the EMTs under his authority recently, and that he would follow up and make sure that his EMT's received that training. In addition, he planned to issue a memo to his EMTs and supervisors regarding appropriate actions in future situations like ours. As I suspected, sometimes EMT's get in trouble for using their own common sense and become a bit gunshy about doing so as a result. That doesn't mean that there is not a way to get support for them and for patients when there is a difference of opinion about what is the correct course of action.

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.

Daily Occupational Therapy?

I would be happy to get one hour a week of OT for V, but finding and keeping an OT who will come to our home has been very difficult. We have only had 6 months of private OT in the past 3 years, and funding was not the problem. I was very happy to come across this resource that provides another way for family or caregivers to implement some of the same strategies to help V that an OT might if they were here.

So, I have copied this review of the product from "Our Journey Thru Autism" Website:

OT in the Home, A Review of an Excellent Resource for Implementing Occupational Therapy at Home
5:11 AM Posted by Martianne


by Martianne Stanger

When you look at a title of a video and it refers to occupational therapy (OT) in the home, you expect a lot. For example:

host of activities to demonstrate how to approach OT at home in between regularly scheduled sessions with an occupational therapist
ideas for helping children regulate their senses while moving through typical activities of daily living (ADL's), such as eating, dressing, bathing, brushing teeth and bedtime
a key to understanding your child’s needs through professional perspective translated into layman’s terms that any caregiver can understand and act upon
an easy-to-watch resource that can hold your interest when viewing it in its entirety as well as be accessed in small chunks, to be watched around a busy schedule
In the case of the 90-minute video, OT in the Home with Occupational Therapist Britt Collins, M.S. OTR/L, you get all this and more.

Activities a Caregiver Can Facilitate
Due to scheduling conflicts, finances and other hurdles, many children are only able to see a licensed occupational therapist periodically. That leaves their caregivers to do OT with them in between. OT in the Home can help with this. It offers a wide variety of ideas that can act as bridge between appointments. Throughout the video, activities and strategies are discussed and modeled. These include ones that key into:

fine motor skills
gross motor skills
sensory regulation, and
organization of behavior.
Both as a parent teaching my children to write and as a tutor who helps many children that have difficulty with handwriting, I found two strategies presented by Britt particularly interesting:

Highlight a portion of each space on lined paper to give children a concrete visual to focus on when placing their lower case letters.
Use a slant board to help children with visual perceptual issues and those that need to strengthen upper extremities and hands.
Since implementing these strategies, I have already seen progress in the children I work with.

Strategies for Every Day Life
Most families cannot access support of an in-person occupational therapist on a daily basis, but any family viewing OT in the Home can benefit from the expertise of a team of them:

Britt Collins (M.S. OTR/L)
Dr. Angela N. Hissong (OTR/L,CAPS)
Dr. Kari Thompson (OTD, OTR/L, BCP, SWC, CLE, IMC,CID Doctor of Occupational Therapy, AOTA Board Certified in Pediatrics, Sensory Integration Certified, Advanced Practice Certification in Swallowing, Certified Lactation Educator, Certified Interior Decorator)
Jamie Bergstein (OTR/L specializing in Pediatric Water Therapy)
Lindsey Biel (M.A. OTR/L and co-author of "Raising A Sensory Smart Child"
This phenomenal team worked together on OT in the Home to provide caretakers with practical strategies and solutions for everyday challenges that they may face with their children.

Some that I found helpful were:

the concept of using gentle physical prompts instead of a lot of verbal ones when moving children through morning routines. Sometimes asking, “What are you going to do next?” is difficult for children to process and a physical prompt or visual cue can be more effective. Since consciously employing this strategy with my own child, I have been seeing better response times and independence when moving through routines.
drinking a thick shake or applesauce to organize oneself in the morning. I had heard and read many times that drinking through a straw can be good for oral motor development, but because my child does not have many oral-motor issues, I had ignored the activity. Upon watching Britt work with the children in the video using this technique, I realized how beneficial this activity can be toward helping any child through transitions, calming and organizing them
the reminder not to draw attention to challenging behavior as it might reinforce it. Brit consistently modeled how to move through an activity, redirecting as appropriate without reinforcing undesirable .

Accessible
OT in the Home is a well-organized resource that allows viewers to access a wide variety of strategies in an easy-to-watch format. Activities are divided into chapters which include types of skills (i.e. fine and gross) and time frames within the day (morning, homework time, bedtime, etc.). This allows viewers to view what they need when they have time to do so.

There is also a lengthy segment on aquatic OT, which made me want to run and sign up for a membership at our local pool, and a brief, but inspiring, segment on designing a sensory-friendly play space for children, which has me sketching and dreaming.

In all the chapters of OT in the Home, I found these elements extra-helpful:

The why behind the what of activities is given. For example, why would one want to toss a bunch of balls into a body sock with a child?
Activities are done with real kids, not actors or models. This made me nod in recognition at times, thinking, “My kid does that, too!” It also adds authenticity and allows viewers to witness how Britt works with a variety of children, providing a wide array of examples of how to provide clear direction, encouragement and fun and calm, firm responses as needed.
Solutions are given for adapting typical OT gym activities to home. For example, there is a good section on obstacle courses with suggestions for materials that can be used at home to create one.
All of the explanations on the video are both real and articulate. When specific occupational therapy terms are used, they are explained in a way that anyone can understand them.

So What’s Not to Like?
There is very little not to like about OT in the Home. In fact, after watching the video for the first time, my only wish was that that I had my remote control with a pause button in one hand and a pen in the other while viewing it, so I could have taken notes on the plethora of useful ideas, activities and information presented in the video.

Upon further viewing (this time, in segments, with pen in hand!), my only wish was “More!” Brit Collins and her colleagues did such a wonderful job presenting occupational therapy strategies in an understandable, practical format, which allowed me to begin using some strategies with my child immediately, that it left me wishing for a “part two” to access when we are ready for the next level.

While I know that working with a licensed occupational therapist in person is priceless, so is having a ready resource to turn to every step of the way when doing occupational therapy at home. OT in the Home is this resource. It is one that any caregiver can benefit from – one that should be in the hands of parents who need to do OT at home, caregivers wishing to explain OT to others and professionals seeking to share a useful tool with their clients.

I will be reading more posts at http://www.ourjourneythruautism.com and I hope you find something helpful there also.

Law Enforcement Training to Caregivers of Special Needs Clients

Kudos to Texas for taking the initiative to recognize the unique needs of citizens with developmental disabilities and for taking action to meet those needs!

Read about the Texas Tech training program in the story below that I copied from the Avalanche Journal.

Staying safe may be harder for disabled
Special considerations need to be made when crisis situations arise involving people with developmental disabilities to keep those individuals from becoming victims or to avert scenarios where the situation may turn even more harmful or even deadly.
Posted: June 14, 2011 - 10:44pm | Updated: June 14, 2011 - 11:03pm

Sergeant Eric Williams, of the Texas Tech Police Department, discusses the interaction between autistic individuals and law enforcement at High Point Village in Lubbock, Texas Tuesday, June14, 2011.
ADVERTISEMENT
By KIM LEHMAN
AVALANCHE-JOURNAL
Special considerations need to be made when crisis situations arise involving people with developmental disabilities to keep those individuals from becoming victims or to avert scenarios where the situation may turn even more harmful or even deadly.

That was the message Texas Tech Police Department officers presented Tuesday evening at High Point Village, 10911 Slide Road, to a group of caregivers of special needs people, and of critical importance as they pointed out people with developmental disabilities are seven times more likely to encounter law enforcement scenarios.

High Point Village is a faith-based organization providing motivational, educational and vocational activities for special needs people and their caregivers.

Sgt. Eric Williams with the Texas Tech Police Department and Officer John Poirier described the measures taken to educate officers and other responders
on learning to recognize and deal with special needs individuals.

The also presented information on how caregivers can assist first responders, such as police and firefighters, to quickly identify someone with special needs to avoid conflicts that may arise because of the person's disability.

Williams and Poirier focused on what they say is an underexposed area of concern - dealing with an active shooter situation, where an armed person enters a place and is intent on mass murder, and the scenario involves individuals in a group situation such as a home for the developmentally disabled.

Williams said the statewide initiative, Crisis Intervention Training, is mandatory for all officers to train them on how to recognize an individual with special needs and take the appropriate action in those cases.

They explained how individuals with special needs, particularly autism, may react with what others perceive as an inappropriate response to law enforcement or other first responders in some of these cases.

"Some of these individuals with autism have been injured or even killed in these circumstances," Williams said.

Some examples include a child with autism killed in a police shooting at a group home in Texas or another young boy with autism, who suffocated in Florida after he was restrained by officers.

Officers have learned to recognize these individuals may not make eye contact, may make repetitive movements, not be able to provide identification when asked and may not be able to speak or use sign language.

These officers have learned alternative practices for dealing appropriately in these situations.

Officers Williams and Poirier discussed the importance of parents and caregiver education and said caregivers can help special needs individuals learn to react calmer to crisis situations by explaining pictures of firemen and police officers, teaching them to dial 9-1-1, inviting local police to community events to interact, and contacting their local police departments to help identify their special needs family members.

Caregivers were also encouraged to use identification programs, such as medical bracelets and state-issued ID cards through their local Department of Motor Vehicles or sew labels containing vital information into the person's clothing.

Another focus of the evening was training caregivers on responding in an active shooter situation.

"A special needs child will be completely overwhelmed, emotionally, physically and psychologically, and it is up to you, as a caregiver to help them so they will not become a victim," Williams said. "You, as a caregiver must act with violent determination to save these kids. When I say violent determination, I mean you must fight like you never have before."

He explained you must get out, hide out or take out the shooter.

If you cannot get out, then try to hide somewhere like an office or classroom, barricade the door with as many heavy items as possible and extinguish all lights and any other devices, like cell phones.

Only when you have reached safety or are hiding, call 9-1-1.

The last line of defense, Williams said, is to take out the shooter.

"Fight like your kids' lives depend on it, because they do," he said.

Williams told the group he did not want to scare anyone make them aware of the need to be prepared in such situations.

"We prepare our kids with fire drills and tornadoes and other things, we must also prepare them for an active shooter situation by using drills as well," he said.

Other tips were to have first aid training and a high quality first aid kit.

Doug Morris, executive director at High Point Village, said the meeting was designed to teach people in the special needs community to avoid being afraid of law enforcement and to show caregivers and parents how to defuse a volatile situation.

James Aldridge, president of the board of directors for High Point Village, said "Parents don't always know how to teach their children how to react to first responders, and we need to give that to them to help prepare them before a crisis situation happens."

To comment on this story:

kim.lehman@lubbockonline.com • 766-2155

shelly.gonzales@lubbockonline.com • 766-8747

Other tips

■ Download an emergency contact form from www.autismriskmanagement.com and fill it out and put it in your child's backpack, or tape it on your booster seat and distribute it to family and friends.

■ Register with Project Lifesaver at www.projectlifesaver.org for immediate GPS assistance with lost individuals.

■ Obtain a state-issued ID from the Texas Department of Motor Vehicles at www.dmv.org.

Comment

Working on the Safety of Developmentally Disabled Citizens

I am glad to hear that someone is talking about the problem of abuse of the disabled and the concealment of it. New York appears to have a long way to go to improve the situation, but are at least making an effort.

To read the article in the New York Times, you can copy and paste this URL, or you can read the article that I have copied below.
http://www.nytimes.com/2011/06/14/nyregion/gains-seen-in-reporting-abuse-at-new-york-group-homes.html?_r=1

ALBANY — Roughly 40 percent of the allegations of physical abuse of the developmentally disabled at group homes and institutions in New York in recent months were not reported to law enforcement authorities, a senior state official said on Monday.
Related

A Disabled Boy’s Death, and a System in Disarray (June 6, 2011)
INTERACTIVE FEATURE: Abused and Used
Enlarge This Image

Nathaniel Brooks for The New York Times
Michael Carey appeared with a picture of his son Jonathan, who was killed in 2007 while in the care of state workers.
The official, Courtney Burke, the new commissioner of the Office for People With Developmental Disabilities, revealed that figure as the Cuomo administration laid out initial steps that it said it was taking to reform the state’s care of the disabled.

Ms. Burke and another administration official testified at a State Assembly hearing that underscored the steep challenges facing efforts to improve the system.

Ms. Burke said she had put in place a number of measures to raise hiring standards and improve the reporting of abuse. Among them, she said she had ordered employees to notify law enforcement officials of episodes of physical and sexual abuse that might be a crime. Her order is a sign of the agency’s problems, because notification is already required by law.

Ms. Burke said that since she took over the agency in March, about 60 percent of the allegations of physical abuse were reported to law enforcement, up from about 17 percent before her tenure began.

Nearly 88 percent of allegations of sexual abuse were reported, up from about 75 percent, she said.

While those figures represent progress, they suggest that there are hundreds of serious allegations that are still not being reported. And Ms. Burke said her agency was still reviewing reporting mechanisms to see if the numbers were accurate.

Ms. Burke also proposed legislation that would bar the agency from hiring people convicted of violent crimes or sex offenses; it would not prohibit employing other convicted felons. The bill would make it clear that an individual with a developmental disability receiving state services could not legally consent to sexual contact with a staff member; the measure is aimed at curbing sexual assaults.

In her testimony, Ms. Burke did not directly address what many critics see as one of the agency’s serious problems, its lack of transparency. The agency often cites state privacy laws for refusing to release even redacted copies of reports of abuse.

“My top priority has been the health and safety of people with developmental disabilities in our care,” Ms. Burke said in her opening statement. “Change does not come easily, but I want to make it clear to you that I am changing things quickly and significantly.”

The hearing was the latest of four led by Assemblyman Félix W. Ortiz, a Brooklyn Democrat, prompted by a recent series of articles in The New York Times detailing lapses in the state’s care of the developmentally disabled. Among the findings: The state has retained workers who committed physical or sexual abuse, rehired many workers it had fired, shunned whistle-blowers and rarely reported allegations of abuse to law enforcement.

Assembly members also heard testimony from Roger Bearden, the new chief of the Commission on Quality of Care, a state agency that is supposed to monitor how Ms. Burke’s agency and others do their jobs.

Mr. Bearden, however, struggled to explain the commission’s role.

“The commission has a simple mission, to protect and advocate for persons with disabilities,” he told the lawmakers.

The commission investigates only a limited number of abuse allegations and has no enforcement powers, leaving the Office for People With Developmental Disabilities largely to police its own staff. The commission’s mission statement, Mr. Bearden said, is “under review.”

Assemblyman Thomas J. Abinanti, a Westchester County Democrat, said, “I don’t really understand what your commission is supposed to be doing, and what I’m hearing from you is that your commission doesn’t really seem to know what it’s supposed to be doing.”

In recent years, the commission has produced few reports and taken pains to stay out of public view. The Times reported in March that aides said Mr. Bearden’s predecessor, Jane G. Lynch, never talked to the press in nearly three years on the job.

“The key for us as a commission,” Mr. Bearden said, “is that we have not had, quite honestly, much of a public presence or face, and I am striving to change that.”

Mr. Abinanti expressed a widely held concern over the state’s overlapping oversight structures. State group homes and institutions are monitored to varying degrees by the Health Department, the Office for People With Developmental Disabilities, the Commission on Quality of Care and federal regulators, among others.

“Sounds like everybody is overseeing everyone else, and everyone is overlooking the problems,” Mr. Abinanti said.

A version of this article appeared in print on June 14, 2011, on page A17 of the New York edition with the headline: Progress Claimed in Reporting Abuse at Group Homes.

Disabilities: Do They All Need Fixing?

Professor Paul Steven Miller was a lawyer, professor of law and an advocate for the disabled. He died in October 2011. Professor Miller also had a condition of dwarfism and suffered discrimination in the workplace. His New York Times obituary said,
"Drew Hansen, an adjunct lecturer who taught with Mr. Miller, said his colleague had long been concerned about the carrying out of the 1990 Americans With Disabilities Act. “He believed that judicial interpretations of the A.D.A. were more restrictive than they had been of civil rights laws because there was not a similarly visible mass social movement,” Mr. Hansen said."

Professor Miller felt, as many do, that it is not always in the best interest of disabled people to correct the genetic differences that result in their particular disability. In a presentation at Georgia State University he had this to say:

"Professor Paul Steven Miller Speaker Program on Avoiding Genetic Genocide
February 28, 2008

"Good Intentions and Eugenics: Avoiding Genetic Genocide"
Event details
Audio recording of this event

Professor Paul Steven Miller spoke on "Good Intentions and Eugenics: Avoiding Genetic Genocide" to a packed room of over 150 people in February 2008. Professor Miller has devoted his professional career to fighting discrimination against those with disabilities.

Professor Miller's impressive resume includes roles as the White House liaison to the disability community, President of Little People of America, and one of the longest-serving commissioners of the U.S. Equal Employment Opportunity Commission. Exploring the relationship between the medical and disability communities, he explained that although everyone wants to do what is in the best interest of disabled individuals, what actually is "best" is often understood quite differently by physicians, health care researchers, and people with disabilities.

Professor Miller observed that there are two frameworks used to understand disability: the medical model and the social/civil rights model. The medical model reflects the dominant societal view that illness and disability need medical solutions so that the ill or disabled person can fit into mainstream society. Alternatively, the social model strives to change society to embrace the disabled person as she or he is.

Professor Miller noted that "the advent of genetic technology has a tendency to pull the focus of disability further into the medical-model realm" and that "the disability community is concerned that genetics as currently defined, practiced, and presented to the public reinforces the stigma of disabled individuals as defective individuals." Commenting on the need for the medical and disability communities to understand each other's histories, he also explained:

"The history and social context of the eugenics movement informs how people with disabilities currently view genetic science and medical science as a whole. There is no question that the genetic revolution holds great promise and that today's doctors and researchers have good intentions and want to improve human health for all. But because of the complex historical and cultural context associated with the science of genetics, the medical and disability communities have a difficult time understanding each other."

The lecture was followed by an in-depth question and answer session and a reception where audience members could meet and talk further with Professor Miller."

Many high-functioning autistic people have argued that they do not want or need to be "fixed". They prefer acceptance.

When a person is able to function independently, support themselves financially, and have meaningful and lasting relationships, I see the point. Perhaps they feel that their disability is a part of their identity and that they would not be the same person without it.

However, when a disability results in substantial dependence on family or society for support, physically and financially, when an individual can not express their needs or desires, when their opportunities to enjoy education, work, friendships, family and freedom are substantially limited compared with non-disabled peers, then genetic solutions will be a blessing. Those who want and need a "fix" should have it. Those who feel their lives are fine without a fix, should be accepted as they are.

What do you think?

Violence Prevention Program for Developmentally Disabled Citizens

The Arc of Maryland has developed a violence prevention program for their clients called The Personal Space Program.

There is certainly a need for such a program. To quote from the ARC document:

"According to research, most people with disabilities will experience some form of sexual
assault or abuse during their lifetime (Sobsey and Varnhagen, 1989). Victims who have
some level of intellectual impairment are at the highest risk of sexual violence (Sobsey and
Doe, 1991). Persons with developmental disabilities have a 4 to 10 times higher risk of
becoming crime victims than persons without developmental disabilities. One study of
alleged crimes against people with disabilities revealed that 90% involved sexual offenses
(Carmody, 1991). Both males and females with developmental disabilities are victims of
sexual violence, however women experience sexual violence at a higher rate than their male
counterparts. Sobsey cites 78.9% females compared to 21.1% of males in research from the
University of Alberta (Sobsey, 1994). Consistent with this, a number of other studies on
rates of sexual assault against women with developmental disabilities reveal that over 80%
had been sexually assaulted (Hard, 1986). Of those who reported being sexually assaulted,
50% had been assaulted 10 or more times (Valenti-Hein and Schwartz, 1995). Sobsey and
Doe indicate that in 56% to 62% of cases involving sexual assault or abuse of children and
adults with developmental disabilities, penetration occurs (Sobsey, 1994)."

The goals of the program are:
Orientation:
· To give participants information about the course
· To help participants get to know each other
· To help participants embrace the idea of difference, and concept of choice
Sexuality:
· To know their body parts
· To know what parts of the body are private and which are public
· To be able to define sexuality
Healthy Relationships:
· Be able to describe a healthy relationship
· Describe the different types of relationships you have
· Describe the appropriate kinds of touches for each relationship
Sexual Harassment:
· Know what sexual harassment is
· Understand that sexual harassment is against their civil rights
· Increase their assertiveness skills
· Know the steps to take when sexually harassed
Sexual Assault:
· Know what sexual assault is
· Understand that sexual assault is against the law
· Know ways to prevent being sexually assaulted
· Know what steps to take if they are sexually assaulted
Domestic Violence:
· Know what domestic violence is
· Understand that domestic violence is against the law
· Know ways to prevent domestic violence
· Know what steps to take if they experience domestic violence
When Someone Who Is Supporting You Hurts You
· Define sexual abuse by direct care staff and others who provide support in daily living
· Distinguish appropriate behavior from abusive behavior
· Understand that violence by direct care staff and others who provide support in daily living is
against the law
· Know what steps to take if they are a victim of violence by direct care staff and others who provide
support in daily living
Safety Planning:
· Know what a safety plan is
· Know preventive safety strategies
· Know ways to react in dangerous situations
· Complete a safety card

Anyone can access the Lesson plan and teaching materials to address the issue of personal safety by accessing this document. Copy and paste this URL:
http://www.thearcmd.org/files/Final.PDF

The National Disability Rights Network

What is NDRN? To quote from the website for NDRN:
"The National Disability Rights Network (NDRN) is the nonprofit membership organization for the federally mandated Protection and Advocacy (P&A) Systems and the Client Assistance Programs (CAP) for individuals with disabilities. Through training and technical assistance, legal support, and legislative advocacy, NDRN works to create a society in which people with disabilities are afforded equality of opportunity and are able to fully participate by exercising choice and self-determination.

WHO WE SERVE

NDRN members serve individuals with a wide range of disabilities – including, but not limited to, those with cognitive, mental, sensory, and physical disabilities.


WHAT WE DO

NDRN members investigate reports of abuse and neglect, and seek systemic change to prevent further incidents; advocate for basic rights; and ensure accountability in health care, education, employment, housing, transportation, and within the juvenile and criminal justice systems for individuals with disabilities."

Issues that are addressed by NDRN include:

Abuse and Neglect
Assistive Technology
Community Integration
Criminal Justice
Disaster Management
Education
Employment
Housing
Juvenile Justice
Medicare / Medicaid
Mental Health
Traumatic Brain Injury (TBI)
Vocational Rehabilitation
Voting


If you or a loved one has a disability, this site is worth a look. They include stories about current disability rights cases in the courts. They also include information about TASC (The Training and Advocacy Support Center).

There are some interesting publications about the lack of workplace opportunities with fair wages for the disabled and the issue of restraint and seclusion in school
To visit the website for The National Disability Rights Network, copy and paste this URL:
http://www.napas.org

Potomac Community Resources Serves Teens and Adults

In Montgomery County, MD, there is an organization that began in 1994, and now serves hundreds of teens and adults with developmental differences. Programs that PCR offers include basketball, chorus, basic communication skills, music therapy, art, photography, Tai Ji (martial arts), and a Friday night social club. They have a Mens's Group and a Women's Group that meets in a local church and they have special events like Earth Day activities. In addition, they offer a Sunday afternoon respite program with many fun and therapeutic activities, once a month.
PCR sends out a periodic newsletter, has a website and is on Facebook. If you are in the Washington D.C. metropolitan area and think you might be interested in looking into PCR activities, the Spring sessions end in July, so there is time to register for the next sessions.

To read more about PCR or to register for these programs, copy and paste this URL

http://www.pcr-inc.org

Genetic Mutations Involved in Many Cases of Autism

In the news today, an interesting article about the causes of autism:

Autism Result Of Scores Of Genetic Mutations, Researchers Say
By SHAUN HEASLEY
June 9, 2011 Text Size A A
Hundreds of spontaneous gene mutations may be responsible for the development of autism in families without a history of the disorder.
In three studies published Thursday in the journal Neuron, researchers from Yale University, Columbia University and Cold Spring Harbor Laboratory in New York looked at gene analyses from over 1,000 families where one child had an autism diagnosis but the parents and the child’s siblings did not.
They found that children with autism had more copy number variants, or sections of DNA that are duplicated or missing, as compared to their siblings without the disorder. The gene variants were wide-ranging, but were involved in the formation of synapses which are responsible for communication in the brain and other parts of the nervous system.
“The diversity implies that a treatment for one form of autism may have no value for the majority,” says Dr. Michael Wigler of the Cold Spring Harbor Laboratory who led one of the studies. “This type of knowledge is a critical first step in developing novel treatment approaches.”
In addition, the researchers found that a greater number of gene variants seemed to be required in order to trigger autism in girls, which could help explain why the developmental disorder occurs more frequently in boys than girls.
One group of genes proved to be of particular interest to researchers because their addition or deletion resulted in two opposite phenomenon. When extra copies of this group were present, the genes triggered autism. But when this group was missing, Williams syndrome occurred, a condition characterized by extreme sociability and friendliness.
“This relatively small genomic interval clearly holds important clues to understanding the social brain,” said Dr. Matthew W. State from Yale University who led one of the studies.

A Self Directed Life Facebook Page

There is now another way to link to this blog and read the latest posts. A Facebook Page has been set up and comments on the wall are encouraged. Tell me what posts have been useful or interesting, and what topics you would like more information about! Share the Blog with anyone who might benefit from the information. That is what this is all about.

The Miracle League

I came across this story accidentally and it brought tears to my eyes. The crazy thing is that the project is happening less than a mile from my home, and I had no idea that it existed until now.

The Kiwanis Club of Bethesda is trying to build a baseball field for disabled children and young adults. They believe that every child deserves a chance to play baseball. The project is called the MIRACLE LEAGUE.

They are are "building a specially equipped baseball field that will give mentally or physically challenged children the recreational opportunity they deserve. Construction of the field requires special design, specifications, and details to be accessible to disabled children." They "are in the process of raising the funds to build this field; hopefully by the spring of 2010." (As of this date, the project is progressing but is not completed yet)

The Miracle League will give these children the opportunity to get out in the sunshine, and enjoy playing the game of baseball in its purest form. It is the first of its kind in Maryland and will serve children in Montgomery County, the surrounding counties, DC, and Virginia.

The Miracle League Field will be located in the South Germantown Recreational Park off
Schaeffer Road, directly across from the soccer complex."

"During each Miracle League game, each child will have a chance at bat and to score a run. Miracle League team members will be assigned buddies who will assist them in hitting the ball and “running” the bases. Fellow schoolmates, members of Kiwanis Key Clubs, college students, business leaders or anyone who wishes to volunteer their time, will be enlisted as buddies to give each child the gift of baseball."

To read more about the project, copy and paste this URL:
http://miracleleaguemontcomd.com

Do You Need Legal Assistance?

Have you heard of the Maryland Disability Law Center?

The home page of their website has this to say about what they do:

"
MDLC envisions a world where people with disabilities are fully included in the workplace, neighborhoods and all aspects of community life. To move us toward this vision, we focus our advocacy toward:

Access to education, housing, health care, and more
Freedom from abuse and neglect and unnecessary institutionalization
Public awareness about people with disabilities and the issues that matter to them "

Under Services and Programs they list the following as their goals for this calendar year:

"Our 2011 advocacy service areas include:

Children’s Mental Health
Adult Mental Health
Developmental Disabilities
Education
Access to Community-based Services for People in Nursing Facilities
Access to Community-based Services for People with Traumatic Brain Injury
Civil Rights in Public Programs
Advocacy for Beneficiaries of Social Security
Voting Rights
Medicaid
Public Policy"

If you need legal support in these areas and are unable to afford legal fees, or if you would like to volunteer your services to the cause, you can read more about Maryland Disability Law Center by visiting this URL, just copy and paste it:
http://www.mdlclaw.org/

I have not personally utilized these services, but if you have, please comment and share your experience with other readers.

Kids Enjoy Exercise Now- KEEN

What is Keen?


KEEN is a national, nonprofit volunteer-led organization that provides one-to-one recreational opportunities for children and young adults with developmental and physical disabilities at no cost to their families and caregivers. KEEN's mission is to foster the self-esteem, confidence, skills and talents of its athletes through non-competitive activities, allowing young people facing even the most significant challenges to meet their individual goals.

Copy and paste this URL to visit the home page for KEEN's website.

http://www.keenusa.org/

Under Programs, KEEN has this to say:

Programs

At the beginning of each KEEN session, all athletes and their coaches warm up as a large group and then pursue individual activities that are tailored solely to the needs of the athlete. Our core program, “KEEN Sports” takes place in a gym with a variety of sports equipment available. Athletes and coaches may throw a basketball or kick a soccer ball, or they may take a walk around an outdoor track. Many athletes love to bounce on our large therapy balls, and others enjoy speeding across the floor on our 4-wheeled scooter boards.

In addition to KEEN Sports, affiliates may offer other programs including KEEN Swim, which brings the KEEN formula to the pool, KEEN Tennis, KEEN Bowling, KEEN Fit, and even KEEN Music. Such diverse activities as Tai-Kwan-Do and Yoga have been adapted to fit KEEN’s approach. Check with your local affiliate to see what programs are offered in your area.

Each session ends with “Prouds.” Everyone comes together in a circle and shares with the group what they did that day that made them very Proud. Participants literally go out dancing to such great tunes as the Hokey-Pokey or the Macarena. Athletes burn energy, meet and interact with new volunteers, see old friends, and then rejoin their parents, who have had some precious respite time. At the end of the session, it’s hard to tell who has had more fun – the athletes or their coaches.

KEEN now has programs in the following 8 cities:
KEEN Greater DC
KEEN Chicago
KEEN Kansas City
KEEN St. Louis
KEEN Los Angeles
KEEN San Francisco
KEEN New York
KEEN Phoenix

Access Ministry- What is it?

I love this page for people of any and all faiths, because it not only describes the programs available to support disabled individuals and their families, but it also explains how to start an access ministry within whatever religious community you may belong to. Again, this is not my church, but so far it is the only Church I know of that makes such a effort to include and support people affected by disabilities. If you know of another such program, please comment on this post and share the information.

To see all of the programs and the guidelines for starting an access ministry within your own religious community, copy and paste this URL
http://www.mbctysons.org/pages/page.asp?page_id=84062

Here is the introduction from the Welcome page to Access Ministry:

"HomeAccessWelcome to Access MinistryWelcome to Access Ministry

Welcome to Access Ministry
Welcome to Access Ministry
Get Connected!
Access Ministry Programs
Volunteer at Access
Upcoming at Access
Community Lecture Series
Access Wish List
Access Program Contacts
Welcome to Access Ministry
Welcome! We are so thrilled you are visiting Access Ministry’s website. Whether you are a new family, potential volunteer, or church leader, it is our hope you will connect, learn, and be encouraged by what you see and read on our website.

Access Ministry is the "disability ministry" of McLean Bible Church. While the word "disability" is used, we prefer to think of Access as a ministry of "possibilities" not defined by what can’t be done but rather by what all individuals regardless of ability level can achieve in God’s house. We believe in Access to God for all His people and celebrate our uniqueness and differences. It is our hope to develop all people into fully-devoted followers of Christ, integrated into the church.

Access Ministry has a holistic approach to care for individuals with disabilities and their families by providing spiritual, physical, and emotional care. We accomplish this through an incredibly passionate staff and core group of volunteers with servant hearts. If you have any questions or need additional information, please contact me.

Here to Serve,


Jackie Mills-Fernald
Director, Access Ministry
703-770-2942

Access Home
Respite
Friendship Club
Beautiful Blessings
Support for Parents
Accessibility Summit
Soaring Over Seven Summer Camp
How to Start a Disability Ministry"

Special Needs Support at a Local Church

I posted earlier about Jill's House, a respite program that was created by the McLean Bible Church in Fairfax County, Virginia (USA). I mentioned that I am not a member of this church, but they offer some great support systems for disabled people and their families. I have copied this page from their website to make you aware of other programs that they offer, beyond Jill's House. I hope other churches copy this model or are inspired by it. The URL to visit the website directly is http://www.mbctysons.org/pages/page.asp?page_id=84062


Choose a Location


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HomeAccessFriendship ClubThe Friendship Club
Friendship Club
The Friendship Club
Upcoming Club Events
How to Serve
Missions Development
The Friendship Club
The Friendship Club is a vibrant, growing community for teens 16+ and adults with developmental disabilities, meeting at the Tysons campus. Participants and volunteers have an opportunity to connect on Saturday evenings at 6:30 pm, or Sunday mornings at 9:00 am and 10:45 am in Room 3000 and at 12:30 pm in Room 3400. The weekend Friendship Class includes lessons supported by the Special Education Curriculum, snack or lunch, games, and fellowship. Participants desiring to worship together may join other Club members in the Edge Worship Service on Sundays at 10:45 am.

In addition to weekend services, members of the Club plan and engage in monthly socials and service projects. Visit the Club's Upcoming Events page to check out where the Club members will be sighted next in the DC area!

Men’s Mentoring
This program fosters a time for the young men of the Club and screened mature men of MBC to have "guy time" in social settings. When possible, Club candidates are matched with mentors for the purpose of building character and fun.

Soul Sisters
This program is for ladies ages 16+ with developmental delays and is designed for a group setting, not one-on-one support. The ladies connect with screened, godly women of MBC for "girl time", which includes laughter, relaxation, and social activities. The program meets approximately every six weeks. Click here for details on our next event.

** A brief "personal profile" of information and permission slips are necessary to participate in programming. To find out how to receive this information and to join this community, contact Fran Smith, Adult Services Coordinator, at 703-770-4393.


If you are interested in serving as a volunteer with The Friendship Club on a weekly, bi-weekly, monthly, or one-time-event basis, contact Mary Hasson, 703-770-8654.

Research on Environmental Links to ASD's

The latest research has pointed to a combination of genetic predisposition and an environmental trigger as the suspected cause of ASD's.

This article by The Examiner addresses some specific suspected environmental triggers. I would like to see this study go one step further. In practical terms, what is needed is a list of specific products containing these harmful chemicals that parents can avoid, and a list of safe alternatives that parents can purchase.

The article has been copied from Disability Scoop and The Examiner:

Toxic chemicals found in baby products; some may be linked to autism

May 19th, 2011 3:13 pm ET
Mike Frandsen
DC Examiner
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A new study shows that 80 percent of products tested made for infants and toddlers contained toxic chemical flame retardants that can have harmful effects on health. The products include items made with polyurethane foam such as car seats, mattresses, and changing pads. Of the 80 samples in the study that contained flame retardants, 79 were either brominated or chlorinated.

Brominated flame retardants, or those based in the chemical element bromine, have been implicated as potential risk factors in autism spectrum disorders, cancer, and other health problems. Studies on brominated flame retardants have shown adverse developmental effects on animals.

Brominated flame retardants have increased in household products over the last 30 years because they make them less flammable. However, the toxins from these chemicals can leach from the products into the environment and accumulate in the body. Fetuses and babies are especially susceptible to toxic chemicals.

Dr. Philip Landrigan of the Mount Sinai Medical Center has said environmental causes, including brominated flame retardants, are strongly associated with autism.

“Over the last decade, we’ve developed very good scientific information that links three or four classes of chemicals to brain injury in babies if the exposure occurs during pregnancy,” Landrigan told Examiner.com in 2010. “We’ve found that phthalates, brominated flame retardants, and certain pesticides are linked to loss of intelligence, attention deficit disorder, and Pervasive Developmental Disorder in children.” PDD is one of the autism spectrum disorders.

Landrigan is one of the leaders of the National Children’s Study, which is expected to identify causes of autism and many other childhood disorders and diseases.

Donna Ferullo, the Director of Program Research of the Autism Society, said in a press release, “We know that little people tend to bite, lick, mouth, wet and fully experience these products, and absorb more toxins than adults by both habits and percentage of small body weight,” she said. “For example, a wet mattress sends an entirely new combination of untested vapors into a small, vulnerable system. Frequent and multiple exposures to chemicals combined with an inadequate detoxification pathway do not ensure healthy development of the brain and immune system. We strive to limit toxic chemical exposures in both the inception and modulation of autism to protect best quality of life.”



Advertisement

According to the study, published in the Environmental Science & Technology Journal, of 101 products tested,:

Four products contained penta-BDE, a substance banned in 172 countries and 12 U.S. states.
29 products contained TDCPP or chlorinated Tris, a possible human carcinogen that was removed from children's pajamas in the 1970s.
14 products contained TCEP, a carcinogenic flame retardant.
Andy Igrejas of Safer Chemicals, Healthy Families said in a press release, "These are the worst kind of chemicals, and they are a potent symbol of the complete breakdown in chemical management in this country. You bring them into your home hidden in consumer products that seem benign. But they get out of products and into your bloodstream where they begin to damage your health. The government doesn’t do anything about it and that needs to change."

Proposed chemical safety legislation would empower the Environmental Protection Agency to minimize risks from chemicals proven to be dangerous, require safety testing of all industrial chemicals, and require businesses to prove chemicals are safe before using them. Currently, only 200 of the more than 80,000 chemicals in existence have been tested for safety.

Feel free to post comments at the bottom of this article.

To subscribe to Mike's articles free of charge, click on the "subscribe" button at the top of this page.

Suggested by the author:
Toxic Chemicals Safety Act to be on 2011 Congressional legislative agenda
Health advocates rally at Capitol for chemical safety bill; some chemicals linked to autism, cancer
Landrigan calls for more research into pesticides, toxic chemicals, environmental causes of autism
Congress: CDC misled public about Washington, D.C. lead in water crisis, lead was toxic for some
Autism advocate Lyn Redwood discusses mercury vaccine controversy, chelation, treatment and recovery


Continue reading on Examiner.com: Toxic chemicals found in baby products; some may be linked to autism - National DC | Examiner.com http://www.examiner.com/dc-in-national/toxic-chemicals-found-baby-products-some-may-be-linked-to-autism#ixzz1Mtrp9KZk

Smartphone and Tablet Applications

Have you heard of Ablelink Technologies, Inc? Before yesterday, I had not. They have several applications designed to be used directly by people with autism, learning or other developmental disabilities.

The 3 smartphone/ipad apps that are available now are "Living Safely", "Every Day Skills", and "Community Sidekick".

Detailed information about each app, with screen shots, is available in the Apple App Store, but I know that these apps are also available Nokia and, I believe, Android systems. I personally use Apple products, so have access to better information about Apple apps and products.

I am checking with my daughter's specialists to see if they are familiar with these apps, as they are so new that there are not any user reviews to go by yet, that I have found.

While Community Sidekick is aimed at someone who can go out into community on their own, it is the most reasonably priced of the three apps today, at $9.99.

Every Day Skills ($24.99 today)and Living Safely ($19.99 today)are self-paced lessons. If a person can use and benefit from these lessons, they are not prohibitively priced. I would certainly love the opportunity to try out one of these lessons with my daughter and see if it appeals to her before purchasing the app. Without reviews from other users, it is a shot in the dark.

I think that the Ablelink Technologies, Inc website and the app store descriptions are worth looking at. http://www.ablelinktech.com/

Are You Artistic?

I do oil paintings on canvas, and my daughter loves to paint with tempera on construction paper. She loves to glue things, and loves to use markers and crayons. I have thought about bringing some of my acrylics and canvas to her space to do some art together.

Well, there is a social network that offers opportunities and supports for artists who have disabilities! It is called the The Disabled Artists Social Network.

When you visit the website there is a tab for "blog" and here is one post from that blog:

From

Laurie Homan:

SHIFT

An international juried exhibition for artists with disabilities

Deadline for submissions: March 11, 2011

VSA, the international organization on arts and disability, announces a call for art for artists ages 18 and older who have a physical, cognitive, or mental disability. Artists are invited to submit up to four artworks of any media that address the theme of Shift – an investigation of a moment of change in one’s life that alters the direction of a person’s path.

For more info: www.vsarts.org/shift

To submit artwork: www.callforentry.org

Selected artists will be notified by April 29, 2011.

Selected artwork will be exhibited at the John F. Kennedy Center in Washington DC in June 2011.
DanSocialNetwork · Jan 27 · Tags: vsarts.org"

To visit this website, copy and paste this URL:
http://disabledartistssocialnetworkbuyandsell.wall.fm/index

One of the links on this website took me to another interesting site that supports the arts for people who have disabilities. This site includes dance, theatre, music, art galleries, exhibits, film and television.
Copy and paste this URL to view this site:
http://www.disabledonline.com/link-directory/arts-entertainment/

Also, visit VSA, the International Organization on Arts and Disability
They have links to sources of adaptive tools for artists and opportunities for artists to show their work. The offer resources to art teachers who want to address special needs in the classroom. To visit VSA, go to http://www.vsarts.org

Travel, Part 2, More Tour Operators Who Specialize in Accessibility

Tour Operators

At http://www.disabledtravelers.com/tour_operators.htm they say:

"There are many different tour operators that offer accessible travel & tours. Some specialize in cruises, safaris, scuba diving, travel with service dogs, and group travel, while others can arrange a wide variety of tours for individuals or groups. Many U.S. based tour operators offer trips around the country as well as Europe, Australia, U.K., and other parts of the world. If you know where you want to go, then your search for a tour should be easy. However, if you're unsure about where you want to go, then you may have a hard time picking just one! We have done our best to find every tour operator offering accessible tours. Check Adventure Travel for more options and don't forget to do some research using our access guides and message boards."

Copy and Paste the URL and visit this site for LOTS of tour operators who can provide specialized assistance to disabled individuals who would like to travel. This website is great! It highlights products that can be purchased to make travel easier on disabled people. It lists tour operators who can take people on real adventure vacations who might not have had access to that kind of experience in the past.

Thinking About Vacation? Want to Travel?

I have copied this article for you. I had no idea such a service existed and I think it is very interesting!


Trips Inc. in the media




Barrier Buster: Company Shows The World To Developmentally Disabled Adults

by Joe Harwood
The Register-Guard
January 4, 2004

Several years ago, leading a tour group of four in London, Jim Peterson spied a sign in a store window advertising five tickets to the evening's Eric Clapton concert at Prince Albert Hall.

Peterson immediately bought the tickets. "I took it as a sign from God that there were five tickets and five of us," he said.

Among Peterson's four developmentally disabled charges was a paraplegic man in a wheelchair.


A Trips Inc. group tests the Elk Lake waters last September. Damon Quade (right) and Justin Hale (rear) served as chaperones on the venture.
Photos: Trips Inc."We had seats close to the stage, but (the ushers) said we couldn't sit there with the wheelchair because of fire regulations," Peterson said. Theater officials worried that in a fire, the wheelchair-bound man wouldn't be able to evacuate quickly.

"So I told them he could get up and walk if there was a fire," Peterson said. "That was a lie, but it was a great show."

Such are the steps Peterson will take to ensure his travel company's special clients receive equal access to adventure and recreation. In the case of Prince Albert Hall, which is not wheelchair accessible, Peterson said he was determined "to use it just like everybody else."

Peterson's Eugene-based firm, Trips Inc. Special Adventures, takes developmentally disabled adults from across the country to destinations worldwide.

Launched in 1991, when Peterson ran four expeditions and served about 70 people, Trips now takes a total of 700 to 750 disabled vacationers on a total of about 40 adventures each year.

Destinations include Mexico, the Bahamas, Greece, Scotland, France and dozens of domestic stops that include Hawaii, Alaska, Disneyland, Nashville, Florida, Las Vegas, San Francisco and a dude ranch near Tucson.

Customers of Trips come with a variety of disabilities, ranging from autism, Down syndrome and cerebral palsy to blindness, assorted physical handicaps and mental retardation.

Peterson is one of a handful of for-profit entrepreneurs nationwide who specialize in this work. Demand has increased as a growing number of families and other advocates have pushed to bring fun into the lives of special-needs people.

Peterson's company has grown to the point where it now has six full-time paid staff, and uses 200 trip chaperons from around the country.

The chaperoning can be demanding. Some clients live in group homes and need 24-hour care.

And the vacation packages are spendy. An annual four-day Christmas gathering in Portland runs $945; a nine-day Oahu vacation costs $2,645; five days in Disneyland can be had for $1,590; and 10 days in Greece has a $3,395 price tag.

The price includes airfare, lodging, meals and entertainment. The ratio of travelers to chaperons runs 3-to-1 or 4-to-1. That small group supervision - which includes dispensing medications and other personal care - plus the multitude of safety provisions Peterson insists upon, drive the price.


Trips Inc. travelers and staff members visited Paris last June to see the Eiffel Tower, Euro Disney and the Louvre.
Photos: Trips Inc.
Still, Peterson said demand outstrips the trips he can supply.

It's not uncommon for the 20 to 30 slots available for a summer camping expedition in Central Oregon to be full six months in advance, said Rhonda Reed, travel coordinator for Trips. On those outdoor expeditions, the chaperone to traveler ratio is 1-to-1 or 1-to-2 for safety reasons, Peterson said.

Limited Opportunities

Peterson started the business a decade after failing to find adequate vacation opportunities for a disabled foster child in his care.

"I found a lot of camps, but what about going to San Francisco for a baseball game?" he said. "I thought about starting my own travel service, and 10 years later I did."

Peterson's personality drives the Trips paid staff. His philosophy is straightforward: Special needs folks need vacations like the rest of us, and the best way to educate the world about the disabled is to take them out into the world to recreate.

"I want the perception out there that we aren't all that different," he said. "People with developmental disabilities aren't made of glass."

Monica Venice is proof of that. Next week, the 38-year-old Cottage Grove woman with Down syndrome will embark on her fifth Trips vacation - this time on a cruise to the Bahamas.

"She usually does one every year," said Monica's mother, Becky Venice, noting that the journeys give her "very independent" daughter the incentive to work at McDonald's and save for traveling.

"It is so thrilling for her to have the opportunity to do a trip like this without Mom and Dad along," Becky Venice said. "Trips gives her as much freedom to be as independent as she can be."

Monica, who has been to Branson, Mo., Disneyworld, Hawaii and Mexico with Trips, said her most memorable venture thus far is the jaunt to Hawaii when she and her group swam with friendly marine mammals at the Dolphin Quest facility. "I kissed a dolphin," she said, giggling.

Letting Go of Kids

Some parents and guardians of special needs people tend to be overprotective and dismiss the supervised vacations offered by Trips and other similar firms, Becky Venice said.

"I've tried to talk it up to other parents to let their kids do this, but it's hard for them to put their kids in the hands of strangers," she said.

Janine Nilsen found Trips when she started looking for an organization for her son, Eric, to travel with after he graduated from Cottage Grove High School. Eric Nilsen, 29, has Down syndrome, and now works in the high school cafeteria.

"It's important for parents of kids with special needs to let them travel," Janine Nelson said. "These kids need real experiences to grow."

Nilsen said the tour groups are a chance for her son to be an ambassador for the special needs community. "To show the world they are not monsters," she said.

Nilsen recounts a vacation Eric took to Hawaii, and he and his group stopped at an Oahu bar. "A group of Japanese businessmen walked in, looked at them and were taken aback," she said. "Eric walked up to them and said 'Hi' and that melted the ice instantly."

Venice maintains she wasn't nervous when Monica took her first vacation without parents. She's known Peterson for almost 30 years, dating back to when both were volunteers for Special Olympics.

"He is such a natural with the population," Venice said. "He just connects with these guys and they love him."

Peterson, who has a master's degree in special education, said the vacations his company offers are the only chance for many disabled people to break their sometimes regimented routines.

"Traveling improves their confidence," he said. "They are adults, so let's get them out there to see the world."


Details, Details, Details

Operating out of a two-story house on West Sixth Avenue in Eugene, the Trips staff plans the minute details of each adventure.

Aside from plane tickets, there are hotel room assignments, special diets and accommodations, instructions for medications, traveler profiles and the lining up of chaperons.

Reed, the travel coordinator and a licensed travel agent, puts it all together, Peterson said.

"We had a trip to Orlando (Fla.) once where we had people coming from 16 different airports," Reed said. "That was stressful."

Peterson insists that all staff members, even the office manager, take at least one trip "so they understand how important their jobs are."

Reed for example, has made several trips to Scotland and France. Tour leaders are also given flexibility to veer off the planned schedule to accommodate different interests.

"We set the itinerary, but they aren't canned trips," Peterson said. "We want people to experience everything."

Reed last June traveled with a group to Paris, and had to make some minor schedule changes. "They liked the Louvre so much they wanted to go back, so we did," she said. "If they don't like museums, I have to find something different for them to enjoy."

Peterson relies on paid group leaders and a network of 200 chaperons to keep his travelers safe. Chaperons, from a variety of backgrounds, are a mix of paid staff and volunteers. For the unpaid, Trips covers the costs, such as airfare, lodging and meals.

A special education teacher in Maryland makes a point of volunteering for one trip a year, Peterson said, while a Wyoming woman travels with Trips as many as 10 times a year.

"The only way it works is if I've got good chaperons," Peterson said, adding that all are thoroughly vetted, including background checks and interviews to screen their disposition and attitude.

Adam Gratch, a program supervisor for the Arc of Multnomah County, has chaperoned seven trips and is slated to head to Nashville in March.

"It's an incredible opportunity," he said. "You get to meet new friends and have new experiences."

Gratch said he appreciates Trips because the firm takes disabled folks to places they would never see on their own.

"They make connections that last well after the trip has ended," Gratch said. "There's a lot of learning that goes on."

Peterson said four couples who met on the trips have married.

Screening clients

Not all folks with developmental disabilities are fit for travel. Peterson requires each to submit a profile, and makes sure a person's social skills will fit with any given group. Formerly a director for a group home for the developmentally disabled, Peterson scrutinizes each profile for any disqualifying issues.

"Our biggest concern is safety. We're not coming at this from a travel agency perspective," he said. "If there are medical concerns that we can't handle, we'll have to say no, maybe another trip at another time."

The business has flattened out since the Sept. 11 terrorist attacks - mirroring the national travel atmosphere - but remains profitable, Peterson said. "This is something that will not make you rich," he added.

Those who know Peterson said he operates Trips out of a deep affection for the disabled. "He loves the population," Venice said. "And his enthusiasm and demeanor rubs off on those people he hires."

Peterson said he loves the clients and their sheer joy in a recreational setting.

"If I had the chance to do it for another group, I wouldn't," he said. "These guys don't complain about the weather. They are simply grateful."
Trips Inc. Special Adventures

Business: Travel agency that caters exclusively to developmentally disabled adults. Conducts roughly 40 trips a year and serves as many as 750 clients a year.

Owner: Jim Peterson
Employees: Six paid staff plus a volunteer chaperon force of 200
Founded: 1991
Headquarters: Eugene

Copyright © 2004, The Register Guard
Reprinted with permission