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Autism Safety - Tips for Appropriate Preparedness - Resources

Within many communities for individuals with disabilities who may wander or elope, there has been concern about alerts and also first responders getting information related to the individual they may be searching for. A simple fix that we've been suggesting for years is a Personal ID card issued by the same state agency that issues driver's licenses. Most states have no age limits and they are relatively inexpensive at about $10.00 for the ID card. This is an example of what MI requires for a Personal ID Card:

http://www.michigan.gov/documents/sos/SOS-428_275188_7.pdf

Parents can renew these as a child's appearance, weight changes, when you move, etc. The good thing is, the information can be searched via the records of the same agency that officers access information across the country. Though state agencies may differ in their issuance of Personal ID cards, accessing the information should be universal.

This will then pull up a photo, all the same info as your state offers via a license, and in some states medical information can be added. It would be nice to see this used as a way to voluntarily add information about a disability such as Epilepsy or Autism, and have a scroll page that may assist in searching for subjects if they wander. Many jurisdictions do not have in house systems to store this information and data, some software programs for 911 data bases are not compatible and most first responder agencies do not have the funds nor manpower hours to provide the data input and maintenance for such programs. We’ve always thought this would be a quick fix to this problem and something at the same time that can provide a photo identification for an individual if needed.

One way to then share that this type of resource is available on a national level would be via the National Center on Missing and Exploited Children or other agencies that already conduct public awareness campaigns for missing children and adults. Additionally advocacy groups, national campaigns via Ad Council Ads and free public services announcements, and also information provided at state agencies that issue IDs and Driver’s licenses. Most parents and care providers have to obtain this information for themselves anyway, so these options could be easily accessed. We do feel this is a possible solution and since it is voluntary, and there are efforts within federal agencies to have options for emergency preparedness, to create a mapping system for location of individuals in natural emergencies as well. This then could be cross referenced for individuals that may wander, and are located without identification. All on a national system available for perimeter searching when needed. This technology is currently available for a variety of first responder needs.

We still however would urge disability community members to do the following minimally while this is worked on and other national initiates are developed:

■Complete a Child or Adult Safety ID Card which can be downloaded free off our website at www.leanonus.org. The cards should be printed onto card stock, completed with a recent photo and thumb prints, and laminated and stored in a place where everyone can access them when needed. They can also then be copied and provided to care providers, a school, or others and the information can be limited to what you would like to include or you can use the card to create your own. Having one of these on hand, that you can just hand to first responders when they arrive, will save precious time. Also when we are anxious, we may not be able to remember such details as height and weight, and those that are not with our children as often may not know this information off the top of their heads. We suggest also taking these cards when traveling, many wandering incidents happen when a child is away from home, on vacation, so it is best to be prepared.

■Arrange to meet with your first responder agency to see what they are currently doing to meet the needs of individuals with disabilities who may elope or wander and what their technical capabilities are for locating individuals and maintaining in-house data and information.

■Provide your first responder agency with an example 911 Data Base Entry Sheet via the L.E.A.N. On Us example located at the link below. If you have more than one overriding jurisdiction, supply one to each if possible:
http://www.leanonus.org/images/LEAN_On_Us_Emergency_Info_Sheet_and_911_E...

This form has a section for the first responder agency to complete when the data is entered. Request, if they have an in-house 911 data base, that they enter your child’s information as soon as possible and send you a copy of the completed form with the section completed for when the entry was made and by whom. We find that in cases where parents may be accused of neglect if their child does elope or wander, showing such attempts to be prepared often assist to show you are a parent that has created a plan and are doing all you can to keep your child safe from harm.

If your jurisdiction would like to host a registry event, have them contact us and we can assist with providing them a kit of how to do so. Additionally there are many materials you can provide them specific them providing appropriate response to individuals with disabilities on our website. These are a couple of examples:

Resource Training Materials for Appropriate Response to Victims of Crime with Disabilities

http://www.leanonus.org/images/Resources_for_Appropriate_Response_to_Vic...

First Responder Pocket Cards for Response to Individuals with Autism ~ Characteristics of People on the Autism Spectrum (10) and Tips to Assist Individuals with Autism (10)

http://www.leanonus.org/images/LEAN_On_Us_First_Responder_Card_for_ASD.pdf

As part of our “Crime Victims with Autism Assistance, Education, and Training Program”, a project funded by the Department of Justice’s Office for Victims of Crime, a series of fact sheets and brochures to assist crime victim assistance professionals, families, and individuals with autism have been created. These can be downloaded free from our website at www.leanonus.org. The eight hour “Train the Trainer” program is also available in any community by contacting L.E.A.N. On Us via the website.

■Visit the “A Child is Missing website, www.achildismissing.org, print off information, and request that your first responder agency register for this program. The reverse 911 calling system is free and sends out 2,000 calls of a specific tape recorded message with information about the missing individual to those living in the area with the person’s description, what areas they may be attracted to, information such as they may not respond to their name or flee if someone tries to touch them.

■Make time to take your loved one to your local police and fire stations to introduce them to first responders, have them sit in a police car or ambulance, and become desensitized to the equipment in a non-emergency situation so they will not be as threatened perhaps during an emergency or search situation. Make sure afterward to send a thank you, see if your child would like to make a card, and send it to the first responders you have met. If possible, also ask to arrange a tour of the station and have the dispatchers meet your child as well. It is helpful for them to know who may call 911 by accident or they will be dispatching aid for. Meeting your loved one will add a personal connection.

■When you are successful at getting some of these programs implemented, attend a local city council meeting with a letter of thanks for the head of the department and for your local mayor and city council. Take your loved one; tell them the importance of this effort and how it will provide a safety net for the community for individuals who may be more vulnerable. Also mention the “A Child is Missing” program and if your board meetings are broadcast on television, they will be seen by those in the community and be more aware when those calls are received.

■Write a letter of thanks to our local paper, contact them also to ask that they run a story on the efforts made by your local departments and have the programs explained for more awareness and so more individuals will participate.

■Look at your home for safety and call for a consultation to secure it if needed or check the many websites that offer equipment to secure your home. Ensure as well that your home is not a hazard or can be one in which if during a fire or emergency you can become entrapped. There are means to lock and secure doors and windows to prevent eloping and still be safe. However also ensure you document all you do and why and be ready to provide those answers if you are questions on these methods.

■Ensure your child’s entire day has been reviewed for safe environments, preventive measures have been taken within IEPs, Section 504 Plans, care provider homes, etc. Ensure that each time an event occurs, be it school, in the community, at a provider’s office, it is documented and the information placed in a three ring binder at home Don’t forget also to create that three ring information binder specific to your child that will contain letters about what challenging behaviors may exist, what recommendations by professional have been made, and if your child is self-injurious, document and photograph injuries and keep records. If your child injures you as a care provider or others, document all of those injuries as well. Photograph injuries to siblings and yourself if possible and kept a log of incidents. Keep a copy of all behavioral intervention plans, in-home, school, doctors’ visits, etc.

■If your child has a dual diagnosis of a mental health disorder, ensure that is noted and that information, is disclosed if needed. Have a crisis intervention plan in place if one may be needed and ensure you have already identified mental health professionals, that are familiar with autism or a co-occurring disability, so that if a transport to a facility is needed, you can indicate your choice option and have an emergency number for a pre-chosen professional to be available to assist.

■Develop a plan for when an emergency or wandering occurrence happens. Have a plan, with steps that are simple and well thought out. Practice it at least one a month and update it annually.

■Look into bringing locating devices, such as LifePROTECK, Emfinders, Care Track, etc, for individuals into your community via charitable contributions and with cooperative community efforts with civic organizations such as the Lions’ Clubs, Kiwanis, Fraternal Order of Police, local Chamber of Commerce’s, etc. Also many states have foundations or Children’s Trust Funds that may be accessed. Ensure when doing so that the community works together to educate first responders on all disabilities involved and that they have local contacts they can work with if more training or information and resources are needed.

■All states have funds they have obtained for training grants from the Office for Victims of Crime. Connect with those that serve victims of crime who have disabilities and see about them hosting trainings specific to those that will assist professionals in these fields to ensure there are teams that can work together for successful prosecution of perpetrators in these incidents. Our agency is able to coordinate these efforts and assist with materials needed, provide training by certified trainers, and assist with ideas to secure extra funding for materials and programming options. Please also provide these fact sheets to professionals in the field about victims of crime who have a disability:

Supporting Crime Victims Who Have a Disability

http://www.bridges4kids.org/pdf/supporting.crime.victims.pdf

Domestic Violence and Disabilities

http://www.leanonus.org/images/Domestic_Violence_and_Disabilities.pdf

Visit disability specific websites and organization websites that offer safety information. Two examples of initiatives are the Autism Speaks Safety Project:

http://www.autismsafetyproject.org/

The Safe Place Austin organization has a number of programs specific to meet the needs of training in this area:

http://www.safeplace.org/page.aspx?pid=357

In closing we put together this note so that families would have a resource to start from and also to know that you are not alone. Please also consider that even if you can do one thing on this list for Appropriate Response or for Appropriate Preparedness, you will have done something that will keep your loved one that much safer.

There is also a realization that we cannot be expected to be on task 110% of the time and that is why being prepared, showing that you have been diligent, having an expectation of others to also assist in keeping your loved one safe. Please be aware that accidental deaths are the leading cause of all children under the age of ten. That drowning is the leading cause of fatalities within those incidents and that this is neither something that is specific nor proven to be much more of a risk factor for children with disabilities. Though some surveys may indicate this to be true, we still do not have data at this point to indicate that. However we do know that individuals with disabilities may not process risk in situations nor be able to assist themselves when they do wander so these factors due place them at a higher chance for injury. That is something we are also hopefully going to be able to change when requesting of all disability groups to approach the Department of Justice and request when police file incident reports, for purposes of Uniform Crime Report data, that a demographic be created to show if a victim of a crime has a disability. In doing so we will also be able to track accidental deaths, victimization and abuse incidents, property crimes, etc., as well as collect data on the prosecution of crimes that do occur against those more vulnerable.

Please visit our website if you would like to contact us. We also have a Facebook page located at:

L.E.A.N On Us

http://www.facebook.com/pages/LEAN-On-Us/314400839740

Respectfully,
Andrew and Carolyn Gammicchia
L.E.A.N. On Us
www.leanonus.org

This issue of the ASA Advocate featured a series on articles on protecting loved ones with autism. The cover features the Gammicchia Family, the founding members of L.E.A.N. On Us.

You can find those articles here:
http://www.leanonus.org/images/Protecting_Loved_Ones_with_Autism.pdf

Serving Victims of Crime with Autism

L.E.A.N. On Us Executive Director Carolyn Gammicchia and Catriona Johnson of the Howard County Chapter of the ASA collaborate to bring much needed resource materials to professionals and the disability community.

As part of its" Crime Victims with Autism Assistance, Education, and Training Program", a project funded by the Department of Justice Office for Victims of Crime, a series of fact sheets and brochures to assist crime victim assistance professionals, families, and individuals with autism have been created via a Networking Grant brought together by L.E.A.N. On Us, the HCC-ASA, and the Autism Society of America.

http://www.leanonus.org/images/IF_YOU_ARE_THE_VICTIM_OF_A_CRIME.pdf

http://www.leanonus.org/images/IF_YOUR_LOVED_ONE_IS_THE_VICTIM_OF_A_CRIM...

http://www.leanonus.org/images/LAW_ENFORCEMENT.pdf

Please feel free to copy this "Onlooker" card. The Gammicchias created this card to provide to others when their son used to have challenging behaviors in public. They decided these cards would educate others that their son was not acting out nor misbehaving, but responding to how the environment was affecting him.

http://www.leanonus.org/images/SOCIAL_WORKERS.pdf

http://www.leanonus.org/images/PARAMEDICS.pdf

http://www.leanonus.org/images/CHILD_ABUSE_COUNSELORS.pdf

http://www.leanonus.org/images/ATTORNEYS_JUDGES.pdf

http://www.leanonus.org/images/Domestic_Violence_and_Sexual_Assault_Coun...

Victims with Disabilities: The Forensic Interview-Techniques for Interviewing Victims with Communication and/or Cognitive Disabilities (April 2007)
This 57-minute DVD (NCJ 212894) provides a specific set of guidelines for law enforcement officers, prosecutors, victim advocates, forensic interviewers, and others for interviewing adults and children with communication and/or cognitive disabilities. An interactive companion discussion guide (PDF 831 kb) including a complete transcript of the DVD and a glossary of terms and concepts used in the film is also available.
http://www.leanonus.org/images/Resources_for_Appropriate_Response_to_Vic...

First Response to Victims of Crime Who Have a Disability
Handbook from the U.S. Department of Justice provides information to law enforcement officers regarding how to assist crime victims who have a disability.

http://www.ojp.gov/ovc/publications/infores/firstrep/2002/welcome.html

Serving Crime Victims With Disabilities (April 2007)
This DVD (NCJ 213366) presents two popular award-winning videos, "Meet Us Where We Are" and "The Time Is Now," originally produced in December 2002 and no longer available in VHS form. "The Time Is Now" helps crime victim service providers reach out and serve people with disabilities. "Meet Us Where We Are," which presents first person accounts of how crime affects people with disabilities, educates disability service providers and people with disabilities about crime victims' rights and resources.
http://www.leanonus.org/images/Resources_for_Appropriate_Response_to_Vic...

Victims with Disabilities: Collaborative, Multidisciplinary First Response (March 2009)
This 72-minute training DVD (NCJ 223940), developed under the guidance of a national advisory board, demonstrates effective techniques for first responders who have been called to the scene of a crime in which the victim has a disability. It not only provides guidelines for interacting with adult and adolescent victims of crime who have communication and/or intellectual disabilities, but also helps law enforcement personnel gain a deeper understanding of the lives, personal attributes, and abilities of individuals with disabilities. A trainer’s guide (870 kb PDF) accompanies this video.
http://www.leanonus.org/images/Resources_for_Appropriate_Response_to_Vic...

First Response to Victims of Crime (April 2008)
This educational multimedia package, produced by the National Sheriffs' Association, looks at the impact of crime on victims and describes steps that law enforcement can take, as first responders, to meet victims' needs. Among the types of victimizations covered are sexual assault, drunk driving, homicide, human trafficking, and mass casualties. The special needs of older victims, child victims, immigrants, and victims with disabilities are addressed as well. This 30-minute video is available in DVD (NCJ 211619) and VHS (NCJ 211618). A companion guidebook (PDF 794 kb) (NCJ 217272) is also available.
http://www.leanonus.org/images/Resources_for_Appropriate_Response_to_Vic...