Autism, Wandering and SafetyNet

The following was originally posted on Rob Gorski’s LostandTired.com blog.

With all the things in the news lately about Autistic children wandering away, I though it was very important to get this message out. I have been talking with Jeremy Warnick, Corporate Communications Manger at SafetyNet. I truly believe in addressing this problem this is a great way to do it. As you know, I don’t often open my blog to outside posters but this is something I think we all need to take VERY seriously. I appreciate the opportunity to work with SafetyNet to help spread this very important message.

Please share this post so we can get the word out. SafetyNet is giving away 1,500 devices and 6 months of free service. This is a pretty big deal.

PREPARE FOR THE UNEXPECTED
Kathy Kelleher, SafetyNet

With back to school time upon us, the routine many families have established over the past couple of months is likely going to change.   And for children with autism, sometimes it’s changes like this that may elicit anxiety and stress resulting in the child bolting or wandering.

No parent wakes up thinking, “today is the day my child is going to wander and become lost.”  September is National Preparedness Month.  So why not take the time now to prepare for the unexpected?  We’ve put together some ideas that can get you started.  Please feel free to leave your own ideas in the comments section.

A great place to start is the AWAARE Collaboration at www.awaare.org.  AWAARE stands for Autism Wandering Awareness Alerts Response Education.  It’s there where you can find the Family Wandering Emergency Plan (http://www.awaare.org/docs/FWEP.pdf ).  It’s a two page form you should keep in a location that is handy in the event of a wandering or emergency.  Remember, if you notice your child is missing, call 911 immediately.  It seems obvious, but some may think, “oh, I’ll go find him upstairs or in the basement or at my neighbor’s house.”  Meanwhile you’ve had no luck and more time has passed.  Public safety departments would rather be en route to the last place your child was seen and then called back saying he has been found, rather than be called 30 minutes or later after you noticed he was missing.  Every moment counts in this type of situation.

The Family Wandering Emergency Plan goes through the steps of what to say when you call 911.  This is especially a good idea when the person calling may be panic-stricken or nervous.  The Emergency Plan also lists critical information about your child and his diagnosis.

Something else to consider – creating an emergency contact point person who can contact neighbors and make arrangements for your other children and pets, while you are assisting the public safety officials in their search and rescue efforts.

Our SafetyNet website (www.safetynetbytracking.com) has great resources as well.  Wandering resources such as Neighbor and First Responder Forms are available.  The neighbor forms should be filled out in advance of any emergency and shared with your neighbors to provide them with current information, even a photo, about your loved one so that they can help you if/when the time arises.  And the First Responder Forms provides information about your loved one for the authorities in your town to keep on file.

There is also a tip sheet – 10 Ways to Help Protect Your Child from the Dangers of Wandering.  I’m sure you are already practicing many of these, but perhaps there is something there you haven’t thought of yet?

At SafetyNet, we do recommend that you consider a personal tracking device.  Do your homework.  There are many different products on the market now.  Research them and find which one is best for your situation.  What I can tell you about the SafetyNet Service is that it is ideal for people at risk of wandering because it uses Radio Frequency (RF) technology, which has strong signals that can penetrate many physical obstructions.  With an RF device, your child can be found in places that a GPS or cellular device cannot reach, such as a wooded area or concrete building.  Think of the weather conditions where you live.  If your child wandered during the winter, and ended up taking shelter in a building or garage down the street, that signal would still get picked up the law enforcement officers specifically trained to find it.

Now would be the perfect time to try the SafetyNet Service!  Recently, they announced the launch of the “SafetyNet Race to Keep Safe” program, in which 1,500 caregivers and/or families will receive free SafetyNet personal tracking devices for six months!  “Race to Keep Safe” runs today through September 30th October 15th, 2011 (or while supplies last).  Please visit www.safetynettracking.com or call 1-877-434-6384 about this wonderful opportunity.  You can also find us on Twitter at http://twitter.com/safetynetsource.

Thanks for your time and best of luck with any transitions that you may be involved with this fall.

- Lost and Tired

Please Vote for Lost and Tired (just click the link) and help me spread Awareness. Everyone can Vote once a day :)

Petition Aims to Keep Loved Ones Safe from Wandering-Related Injuries and Death

change.org

The ICD-9-CM Coordination and Maintenance Committee is considering a proposal that would create a medical diagnostic code for wandering. There is a petition available to sign and show support. Here are just a few reasons why a medical diagnostic code will help protect at-risk individuals with a history of wandering:

- Physicians are largely unaware of this issue; therefore, cannot provide prevention materials or advice. A diagnostic code will increase awareness, advice and prevention-material distribution.

– A diagnostic code will allow for data collection on the incidence of wandering, thereby increasing opportunities for prevention, education for doctors, caregivers, school administrators and staff, first responders/search personnel.

- Many nonverbal ASD individuals are unable to respond to their name when called. We feel a diagnosis code will lead to increased awareness and the development of emergency search-and-rescue response protocols.

- We believe a medical code will enhance schools’ understanding of wandering so that children with a history of wandering will be better protected. Currently, wandering is not looked at as a medical condition, but one of choice or bad behavior. This has lead to a lack of school training, prevention and emergency response. In January alone, two children with autism went missing from their schools.

- Children and adults with ASD who suddenly flee, bolt or run because of a trigger are at greater risk of restraint or seclusion. We believe a medical code will help establish safe protocols that work to eliminate triggers, thereby eliminating the need for restraint.

- We’ve seen reports of parents locking/secluding children in their rooms to keep them from wandering outside. While this is anecdotal information, we believe parents, schools and other care providers need better solutions. A medical code has enormous potential to help provide safe alternatives.

- We believe every disabled individual with a history of wandering — who is at serious risk of injury, trauma or death — should have access to safety devices and prevention materials regardless of the caregiver’s income. A medical code for wandering could potentially provide insurance coverage for those unable to afford critical protections for their children/adults.

You can visit change.org to sign the petition or to submit a personal or organizational letter.

via http://www.change.org/petitions/keep-our-loved-ones-safe-from-wandering-related-injuries-and-death-4#signatures?opt_new=t&opt_fb=t

Dementia, Alzheimer’s disease and nutrition

This Senior Savvy column addresses the important issue of dementia and nutrition:

Q: My mother, who has Alzheimer’s disease, lives in a nursing home. She is not eating well. She does not feel hungry and cannot be coaxed into eating. I have gone in to feed her, but she takes one bite and spits it out at me. I worry if she doesn’t eat enough, she will lose weight and become malnourished. Is there anything more I can do?

A: As dementia progresses, decreased food intake is common in later stages. Speak with the staff about your concerns. Also, feel free to speak with her primary care physician about your worries. It is important to eat and take in a certain amount of calories. The nursing home can weigh your mother weekly for weight loss. They can offer your mother high-caloric drinks, high-caloric cereal and other foods. These high-caloric items have vitamins and other important nutrients.If your mother enjoys picking up food and putting it in her mouth, consider having available a sandwich cut into bite-size pieces when you visit. Hand your mother a piece and give her time to eat it at her leisure.

via Senior Savvy: Helping your elder with eating – Little Falls, NY – The Times.

SafetyNet available in Davie, Florida

Finding a missing loved-one that has wandered off can be as simple as tracking a radio signal.

The Davie Police Department has joined the SafetyNet program that provides wrist or ankle bracelets for people suffering from cognitive issues such as Alzheimer’s Disease or Autism who may wander off and become lost.

The SafetyNet program is offered to qualified law enforcement and public safety agencies at no cost, according to the SafetyNet Web site. The free training includes learning how to use the search and rescue equipment and in-depth training and certification of it, technology and procedures for performing a search and rescue operation.

via SafetyNet Technology To Help Find Wandering Elderly « CBS Miami.

SafetyNet now available in Boston to help protect people with autism, Alzheimer’s who wander

SafetyNet announced at a press conference that its SafetyNet service is now available in the city of Boston. SafetyNet helps caregivers provide an added layer of protection for loved ones with cognitive conditions such as autism and Alzheimer’s from the life-threatening behavior of wandering. The service also provides public safety agencies with the tools and training to more effectively find and rescue those individuals if they wander and go missing.

The Boston Police Department has been trained and certified on the SafetyNet service, as well as equipped with search and rescue equipment. The department can now use the SafetyNet service to find and rescue people at risk who go missing. SafetyNet eliminates the countless man-hours that can be required in traditional search and rescue operations.

“In Massachusetts, statistics show that there are approximately 10,000 school aged children with autism and an estimated 120,000 people with Alzheimer’s. We’re very proud to offer this service, which can provide caregivers with additional peace of mind about protecting their loved ones,” said Kathy Kelleher, Vice President, SafetyNet. “Boston joins the growing list of Massachusetts communities that now offer the SafetyNet service. SafetyNet has already rescued residents in other parts of the state—and country, including the dramatic rescue of an 8-year-old boy in Quincy, Mass. who had wandered into the ocean and was rescued by local police in just 14 minutes using SafetyNet’s tracking equipment.”

To bring this valuable service to Boston, SafetyNet worked closely with the Boston Police Department. SafetyNet provided 14 sets of electronic tracking systems to Boston police. In addition, SafetyNet officials and industry experts provided certified training for police officers in each of the 11 districts located in Boston on the use of its specialized equipment to find and rescue individual clients enrolled in the service. The Search and Rescue Receivers, certified training and ongoing support are provided at no cost to the Boston Police Department or taxpayers.

How SafetyNet Works

Once caregivers enroll their loved ones in the service, they receive a SafetyNet Bracelet, which is worn by the person at risk typically on their wrist or ankle. The caregiver provides information about the client to assist in search and rescue, which is then entered into a secure database. SafetyNet provides 24×7 emergency caregiver support.

The SafetyNet Bracelet constantly emits a Radio Frequency signal. Radio Frequency is the technology of choice because, unlike cellular and GPS technology, its signal doesn’t rely on cellular networks or satellite signals and can often be tracked when a client wanders into a shallow body of water, a densely wooded area, a concrete structure such as a garage, or a building constructed with steel.

The Search and Rescue Receivers used by public safety agencies can detect the Radio Frequency signal emitted from a SafetyNet Bracelet typically within a range of approximately one mile in on-the-ground searches and 5-7 miles in searches by helicopter.

The SafetyNet certified training for public safety agencies focuses on its specialized electronic equipment, technology, procedures and on how to effectively communicate with and approach individuals who have cognitive conditions. SafetyNet’s secure database contains information on each individual client enrolled in the service so that the search and rescue team can have information on the individual’s personal habits and how he or she should be approached, spoken to and comforted.

Resources for Caregivers

SafetyNet offers SafetyNetSource, an online information and resource center designed to assist caregivers seeking tips on how to protect their loved ones who wander. SafetyNetSource offers compelling content from across the web, access to the SafetyNetSource Twitter feed and YouTube channel, a Facebook page to help caregivers communicate with one another and engage in a community of support, plus a variety of valuable resources for caregivers such as a form to distribute to the local first responders and neighbors that may be helpful in the event their loved one wanders.

Availability & More Information

For more information about SafetyNet, please call (877) 4-FINDTHEM (877-434-6384) or visit safetynettracking.com

via New Service That Helps Police Find and Rescue People Who Wander Now Available… — BOSTON,  Jan. 26, 2011 /PRNewswire/ –.

Sargent Shriver Peace Corps Founding Director, Special Olympics Leader, Dies at 95

The world today remembers Sargent Shriver, founder of the Peace Corps, former ambassador, and Special Olympics Chairman of the Board Emeritus, who died Tuesday at 95.

Sargent Shriver was diagnosed with Alzheimer’s disease in 20003, and his daughter, Maria Shriver, became a visible Alzheimer’s activist. His late wife, Eunice Shriver, founded the Special Olympics, and Sargent Shriver was a leader the Special Olympics, as well, helping it to grow into an international organization. Special Olympics athletes who are trained as public speakers are given the special title Sargent Shriver International Global Messengers.

R. Sargent Shriver, the Kennedy in-law who became the founding director of the Peace Corps, the architect of President Lyndon B. Johnson’s war on poverty, a United States ambassador to France and the Democratic candidate for vice president in 1972, died on Tuesday in Bethesda, Md. He was 95.

His family announced his death in a statement.

Mr. Shriver was found to have Alzheimer’s disease in 2003 and on Sunday was admitted to Suburban Hospital in Bethesda, where he died.

via R. Sargent Shriver, Kennedy In-Law and Peace Corps Founding Director, Dies at 95 – NYTimes.com.

Improv for Alzheimer’s, dementia patients

Five of the six members of the Memory Ensemble were gathered in a nondescript conference room at Northwestern Memorial Hospital, ready to begin their weekly improvisational acting workshop.

“Where’s Irv? We need Irv,” one said.“Oh, he’s always late,” said another. “He’s very dependable that way.”

At first glance, they could have been any group of energetic older Americans dipping their toes into amateur theater. But it was soon evident that this was not a social event: Ensemble members exhibited pronounced physical and verbal tics, abrupt lapses in conversation and other telltale signs of the cognitive disorders that characterize dementia and Alzheimer’s disease.

A collaboration between the Feinberg School of Medicine at Northwestern University and the Lookingglass Theater Company, the Memory Ensemble is what organizers believe is a first-of-its-kind program that seeks to improve the quality of life for people dealing with the early stages of memory loss.

The seven-week pilot session is designed to give newly diagnosed participants a “safe and supportive environment where they can challenge themselves but still feel secure,” said Christine Mary Dunford, an ensemble member at Lookingglass Theater.

via Chicago News Cooperative – Trying Improv as Therapy for Those With Memory Loss – NYTimes.com.

Alzheimer’s patients will ride Alzheimer’s Express float in Rose Bowl parade

A new float will cruise down the avenue during the 122nd Rose Bowl parade in Pasadena, Calif., on New Year’s Day.

In an effort to raise awareness of a disease headed for epidemic proportions, the once low-profile Alzheimer’s Association has upped its image in recent years, and its latest effort is “The Boomer Express” float, a locomotive created from purple strawflowers, iris and other blooms. The float, a joint collaboration with drugmaker Pfizer, is the group’s first-ever entry in the parade.

Onboard will be people in the early stages of Alzheimer’s, as well as family and friends touched by the disease. A whistle will blow every 70 seconds, as often as someone develops the brain-wasting illness.

Alzheimer’s is a national crisis, says Angela Geiger, chief strategy officer for the Alzheimer’s Association. “As the first wave of Baby Boomers turns 65 this January, the devastating impact of this disease is only going to skyrocket unless we can change the path.”

via All aboard the Alzheimer’s Express at the Rose Bowl – USATODAY.com.

Alzheimer’s Disease: iPhone apps for caregivers

Alzheimer’s caregivers with iPhones or iPads should check out the iTunes App Store, where there are several Alzheimer’s-related applications. Among them, an app that identifies everyday objects to spark memories in dementia patients and an app that uses animation to explain brain function and anatomy to caregivers.

There are several iPhone apps that help individuals with Alzheimer’s disease and their carers. Alzheimer’s Cards is an Alzheimer’s iPhone app that displays images of foods and objects. iAlz Pro is an Alzheimer’s disease assessment app.

via Useful Alzheimer’s iPhone Apps for Seniors and Carers.

Neurology: Alzheimer’s Disease: An Overview Medical Animation from Focus Medica for iPhone, iPod touch, and iPad on the iTunes App Store.

Alzheimer’s and dementia: Supporting caregivers

This post from Notes for Dementia Caregivers is written by a businessman in India, but he has a lot to share with the families of caregivers everywhere. It’s entitled “Supporting the primary caregiver: Mistakes made, lessons learnt, tips shared.” Here, he looks back on some of his early “mistakes.” Follow the link to read his lessons and tips to help the dementia caregivers in your life.

My mother-in-law suffers from dementia, and my wife is the primary caregiver. Nowadays, I introduce myself as a secondary caregiver, but I did not always see myself in this role. After my mother-in-law was diagnosed, and my wife took over the role of the primary caregiver, I failed to support her for many years because of ignorance and some incorrect attitudes.

Briefly, I did not try to learn about dementia or its caregiving after the diagnosis and had no idea of what to expect. I think I expected no impact I underestimated the caregiving load and did not appreciate that my wife could be overwhelmed physically and emotionally.

I perceived her as “negative” when she looked worried or asked me to reduce travel overseas because she would not be able to handle emergencies.

Most people in India treat dementia patients as they would treat any other elder. Close relatives egged my mother-in-law to show more “willpower” and criticized and mocked her for her “dependence” on my wife. They also blamed my wife of negligence and ill-treatment of the dementia patient based on the patient’s confused statements and their own faulty perceptions. I knew this was unfair. But I told my wife and mother-in-law to “adjust” or “ignore” critical comments instead of explaining facts to relatives. My wife was completely isolated by my relatives.

I think, subconsciously, I viewed caregiving as just doing a set of home-based tasks, and easier than “professional work”. This unexamined assumption of mine affected my attitude and decisions for many years.

As my wife’s time and energy were diverted into caregiving, she had to give up the professional work she loved, and also her social life, her friends, and her hobbies. It was a loss of identity for her. I did not realise that she needed emotional and functional support, and that she needed time off from caregiving I think, subconsciously, I viewed caregiving as just doing a set of home-based tasks, and easier than “professional work.” This unexamined assumption of mine affected my attitude and decisions for many years.

via Supporting the primary caregiver: Mistakes made, lessons learnt, tips shared « Notes for Dementia Caregivers.