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Important Issues : Training helps first responders assist kids with autism
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Posted by sylvia on Thursday, May 27, 2004 (17:05:34)
The Journal Net 10/05/2004
By Michele Holtkamp
When the firetrucks come screeching into a neighborhood to rescue a family, firefighters may need to turn the sirens off.
When a police officer tries to console a child after his or her parent is injured, offering a hug may be the worst possible action.
During a fire or crime, a typical child may hide but is glad to see a rescuer, said Mary Irvin, an autism consultant for all Johnson County schools with Earlywood Education Center. But an autistic child may be so petrified that he or she may fight the rescuer.
About 150 children in Johnson County have autism, and Irvin and Toni Flowers, assistant director at Earlywood, are urging parents to register their children with the Johnson County Sheriff’s Office. That information will be entered into the law enforcement computer system.
Dispatchers can then tell firefighters and police officers on their way to a scene that an autistic child may be present.
Autism consultants are training first responders throughout the county on methods to connect with children with autism, who may hide, lash out or run off during stressful emergency situations.
Autism is a behaviorally diagnosed developmental disability that affects an individual’s social interaction and communication. Autism affects each individual differently and to varying degrees, according to the Autism Society of America.
For example, an autistic child may run from a stressful situation, flee from loud noises or become aggressive, especially when touched. The child may become even more anxious when a well-meaning emergency worker tries to get a child to leave behind a comfort object he or she always carries, Irvin said.
The dispatch registry system allows dispatchers to know if the autistic child has a tendency to run or has a special attachment to a specific stuffed animal.
Some autistic children also have extremely high pain thresholds and could be severely hurt and not know it. For example, firefighters recalled a situation when an autistic child had a broken collarbone for three days before caregivers recognized the injury.
Irvin and Flowers recalled an incident in which an autistic child was injured during the weekend. The child was taken to an urgent care center, then a hospital emergency room, where the child was strapped to a gurney. The child suffered long-term effects from the trauma of being tied down.
Secretaries, librarians and cafeteria workers in Johnson County schools have already been trained in how to handle autistic children in emergency situations. Bus drivers will be trained in the fall.
The number of children with autism nationwide is increasing. Experts debate the cause of autism, but statistics show that one in 250 babies has autism. That rate is an increase from 1999, when one in 1,000 were afflicted.
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Important Issues : Community Care and your rights as a carer UK
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Posted by Sylvia on Thursday, March 04, 2004 (15:27:54)
The NHS and Community Care Act 1993 placed the main responsibility for the provision of support for disabled people and their carers living in the community with local authority Social Services departments.
This network of support provided by the NHS, Social Services or the Voluntary or private sector is called "Community Care". This support may be provided directly by Social Services or by buying in services from other organisations, or by liaising with other authorities which have a duty, such as housing departrnents.
The Act places a duty on Social Services to assess any person who appears to be in need of services, to identify if they can be cared for at home, rather than going into residential care, and to provide services in response to their needs.
The Carers Recognition and Services Act 1995 obliges local authorities to inform Carers about their rights and to offer them a separate assessment of their needs if they provide 'a substantial amount of care on a regular basis'.
Social Services Assessments
Assessments are the first stage in sorting out what is needed and will be performed by a Case Manager. An assessment can be requested by yourself or the person you care for, or by another professional, such as your G.P. or Community Nurse, if they think it appropriate.
The assessment should take the form of an interview with a Case Manager from Social Services, preferably in your own home. You can have someone with you if you are unsure about what is required.
It may be helpful to write down beforehand all the tasks that require your help and those with which you would like some assistance, as well as anything that you need for yourself such as regular time off help with domestic tasks.
Both you as a Carer, as well as the person you care for, are entitled to separate assessments. Social services will often not volunteer the fact that Carers are entitled to a separate assessment - you have to ask for one.
The Case Manager will ask questions about the health and living conditions of the person you care for, what tasks require help, etc. As a Carer, you should be asked separately about your caring role and your own physical and mental health.
Your needs as a carer must be taken into account, when provision for the disabled person is worked out! It is important to be honest and realistic here and not to gloss over any difficulties.
Part of the assessment may involve asking questions about income and benefits for the person you care for which is needed later on if services are provided.
Care Plans
Following an assessment a Care Plan will be drawn up, which should show details of the support needed, taking into consideration your own needs as well as those of the person you care for. You will be asked to sign it but do not if you are unhappy about any aspect.
The plan should also name a contact person, usually the Case Manager, who will be responsible for managing your care plan and to whom you should notify any changes in circumstances or problems.
Problems With The Assessment Process
If you are unhappy about any part of the assessment process, from being refused an assessment to not receiving a service which you have been assessed as needing, you have the right to challenge the decision.
You should try to sort out the problem informally first by contacting your Case Manager. If this fails, put your complaint in writing. The Social Services department must respond within 28 days in writing.
If you are still not satisfied with the reply then the Social Services Commissioner will consider your complaint.
Charging For Services
The person you care for may be charged for the services provided to them, such as Home Care or Day Care. You must be given full information about this. If you are unhappy about any charges, you can follow the complaints procedure and contact your Social Services Commissioner.
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Important Issues : Buckling up can be struggle with autism
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Posted by Sylvia on Sunday, February 01, 2004 (11:57:24)
Indy Star 31/01/2004
By Terry Horne
The minivan, its flashers blinking, was moving slowly on I-465 when an 18-wheeler loaded with food products barreled into its rear.
Debra Boboruzian, who had slowed down to deal with a mechanical problem, was belted into her seat and survived. But her son, Eric, died.
Indiana State Police said the 8-year-old autistic boy did not appear to be restrained, although the damage to the van was so severe that investigators could not be sure.
For parents of some autistic children, the Jan. 15 tragedy points out the danger they face daily as they ferry unpredictable passengers who sometimes undo their best efforts to protect them.
Some have used duct tape to try and make a seat belt or harness tamper-proof. Others have installed specially made equipment.
Amy and Steele Gudal, who founded the private Northeastside school for autistic children where Eric was a student, have even hired an attendant to sit with one of their two autistic daughters.
"This is where my heart lies. Keeping your child in a restrained seat is impossible," Amy Gudal said. "Just to drive in a car with your child is a dangerous situation."
Experts say keeping an autistic child safe in a vehicle can be challenging, but it's possible.
Dr. Marilyn Bull, a pediatrician leading a national effort to improve car safety for children with disabilities, acknowledges that much training remains to be done.
More than 30,000 people, mostly emergency workers and other first responders, have been trained nationally, earning certification as child passenger safety technicians through programs like the Automotive Safety Program, which Bull founded in 1981 at Riley Hospital for Children.
But only in the past few years has the National Highway Traffic Safety Administration turned its attention to the special needs of children with disabilities. Four years ago, the agency gave Bull's program $24,000 to develop a training program regarding their safety needs.
So far, 400 people nationally have received specialized training at Riley or one of 10 other sites. These are the people who can advise parents about special equipment for autistic children and transportation issues.
Only 22 people have received the training in Indiana.
And these are the people who can help mothers like Kristye Lewis and Suzanne Glesing.
Lewis said she's even looked at safety harnesses for race car drivers in her effort to keep 10-year-old daughter Kirstyn safe.
"We try everything we can to keep that child buckled, but she's back out," Lewis said.
Like many parents of autistic children, the Seymour mother is regularly driving long distances for her daughter's therapy and doctor's visits -- and the travel is stressful.
"I worry about it," she said.
Car safety isn't always an issue for autistic children. Even Kirstyn will often sit contentedly.
"It's just certain times," Lewis said. "Then she's all over the car."
One reason parents of autistic children have such difficulty is the nature of the disability, which the Autism Society of America describes as a complex disorder of the central nervous system.
Many autistic children have problems communicating verbally. Lights, sounds or people can be overwhelming.
Glesing, of Carmel, said teaching her 5-year-old son, Alec, requires persistence. "Everything overwhelms him, so it takes a lot of effort to draw him out, to work with him."
And even she doesn't always know when she's making contact.
"He's never called me 'Mom.' He is a little boy that I love more than life, and I don't know what any of his basic desires are."
For Glesing, transportation didn't become an issue until Alec began riding a bus to school. Alarmed that he was roaming the bus, school officials gave her a harness that could clip to a bus seat. But after she started using it, Alec apparently realized he could get out of his family car seat.
And as she was driving on I-465 one day, he climbed into the front seat and pulled the gearshift. "I thought, this is ridiculous. I'm going to wreck the car."
So Glesing called the company that made the school harness system, bought a harness and got a friend to install it in her Yukon. "It was really necessary for me to have him secured safely."
Bull is concerned that parents like Glesing, who find solutions on their own, get the help they need to make sure the equipment is installed correctly.
And she said equipment is available, even if parents like Lewis and Gudal have trouble finding it.
But equipment alone isn't always enough. Intensive training of the child often is required, too, Bull said.
She said there is help for parents.
"They shouldn't be struggling to find those resources."
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Important Issues : Self-Injurious Behaviour
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Posted by sylvia on Saturday, January 17, 2004 (12:34:49)
Written by Stephen M. Edelson, Ph.D.
Self-injurious behaviour often refers to any behavior that can cause tissue damage, such as bruises, redness, and open wounds. The most common forms of these behaviours include head-banging, hand-biting, and excessive scratching or rubbing.
There are two major sets of theories on why people engage in self-injury - physiological and social. Some of the physiological theories (and suggested treatments) are:
1. These behaviours release beta-endorphins in the person's brain, which in turn, provides the person with a form of internal pleasure (beta-endorphins are endogenous opiate-like substances in the brain).
(Treatment: If a person is given naltrexone
, a beta-endorphin inhibitor, self-injury may decrease.)
2. Sudden episodes of self-injury may be caused by sub-clinical seizures. Sub-clinical seizures are not typically associated with the characteristic behaviours of conventional seizures, but they are characterized by abnormal EEG patterns.
(Treatment: The person should receive an extensive EEG to determine if the self-injury is associated with sub-clinical seizures.)
3. Head-banging or ear hitting may be caused by a middle ear infection.
(Treatment: The person should be given an extensive ear examination.)
4. Some forms of self-injury may be a result of overarousal (such as frustration). Self-injury acts as a release, and thus, lowers arousal.
(Treatment: One should try to reduce the person's general arousal level, such as through relaxation/visual imagery therapy, deep pressure, and exercise.)
5. In some cases, self-injury may be a form of self-stimulatory, stereotypic behaviours. That is, they are repetitive, ritualistic behaviours which provide the individual with some form of sensory stimulation or arousal.
(Treatment: Person could be given sensory integration therapy to normalize the senses.)
Some of the social theories explaining these behaviours are:
1. Some individuals engage in self-injurious behaviours to obtain attention from other people.
(Treatment: People in the environment should ignore the person when he/she engages in self-injury; thus, the person will learn that the behavior will not lead to attention.)
2. Some individuals exhibit self-injury to escape or avoid a task.
(Treatment: The person should be asked to complete the task rather than escape the task.)
Although it has not been discussed in the research literature, there is also the possibility that these behaviours could be related to hypersensitivity to certain sounds in the environment. For example, if a sound bothers an individual, he/she may react by hitting one's head or ears.
(Treatment: One may consider trying auditory integration training.)
Basically, there are many reasons why people engage in self-injurious behaviour. The best way to determine the reason for the behaviour in an individual is to conduct a functional analysis.
This involves analyzing what occurs prior to the behaviour as well as what happens immediately after the behaviour. If one can rule out possible social influences on the behaviour, then physiological causes should be investigated.
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Important Issues : Self Injury - some common issues
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Posted by sylvia on Saturday, January 17, 2004 (11:04:53)
What is self injury?
Self injury is deliberately harming ones own body. It can take many forms, cutting, burning, picking, hitting, pulling, punching, puncturing, drugs, alcohol, suffocating, eating disorders.
Often these can be interchangeable.One stopping and the other beginning.
Just as there can be many kinds of self injury there can be many degrees of self injury. The degree of self injury can be marked anywhere along a continuum from mild to severe.
Survival Function
Self Injury can include both emotional and physical injury to ones self. It can be a sign that a person is not coping with their surroundings or with a situation.
Self Injury usually has meaning for the person, who usually has insight into why they are self injuring.
It can be an important survival function, a means of surviving unbearable feelings and experiences for the person. The best way they know of coping.
What self injury is to you
There can be many reasons why a person self injures, some of the more common are:
*cutting/burning the bad out because you deserve it.
*making feelings go away (overriding feelings)
*to ground the body or conversely to dissociate from the body
*for the pain/blood
Perception
Just as self injury can perform many functions for individuals so it can be perceived by others to be many different things, often as being manipulative, suicidal or just attention seeking behaviour.
Which it is usually not.
It is sometimes the result of sexual, physical or emotional abuse, or it may be the result of surviving in an invalidating environment. Low self worth and body value play a varying role in self injury.
source: Australian Self-Harm/Injury Education
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