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Various Articles : Council faces overspend of £1.1m to fund special needs
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Posted by sylvia on Thursday, March 23, 2006 (17:00:54)
Scotsman
By Frank Urquhart
ONE of Scotland's rural councils is facing a £1.1 million overspend because of the soaring cost of providing residential school placements for children with special needs.
And senior officials in Angus Council are warning that the rising costs of caring for young people with behavioural problems and disabilities are no longer sustainable.
The increasing financial pressures facing Angus Council's residential school budget is highlighted in a joint report to the council's social work and education committees prepared by Dr Robert Peat, the director of social work, and Jim Anderson, the director of education.
The report reveals that, despite council action to stabilise the number of young people requiring residential school placements, the cost of the service has more than doubled in six years - five times the rate of inflation.
The directors state: "Since 2000 Angus Council has funded residential school placements through a joint funding arrangement between the social work and health department and the education department.
"Every year this joint budget has been under increasing pressure. In 1999-2000 the total residential school budget for Angus was £569,000. In 2005-6 it was £1,150,000. This amounts to a 102 per cent increase in the budget.
"Over the past six years, despite a national trend of local authorities increasing their number of placements, in Angus the number has remained relatively steady. The council has established a number of services and developed provision to minimise the requirement for residential placements.
"Despite this, however, in 2004-5 the joint budget was overspent by £610,717, and this trend is likely to continue in the current financial year."
The report states: "Over the past six years the average cost of a residential placement has increased by between 79 per cent to 138 per cent, depending on the type of placement. This contrasts with cumulative inflation over the same period of approximately 22 per cent. The increase in cost of placement is attributed to additional costs arising out of improvements to staffing standards, additional salary increases and additional training pressures."
The directors claim that one of the main factors contributing to the increased spend is the changing profile of residential placements within Angus. There has been an increasing demand for placements for children with complex educational and support needs, requiring long-term care in residential accommodation, and an increasing need to provide placements for some children until they are 18.
The council also has no control over decisions taken by sheriff courts and children's hearings to place young people in secure care or residential schools, but has to meet the cost.
The directors warn: "The 2005-6 joint budget is £1,150,000 and at present a significant overspend of around £1.1 million is projected. The education share of the projected overspend is expected to be contained within the existing cash limited budget.
"Some £400,000 has been set aside in the social work and health revenue budget for this issue and a funding source for the balance of projected overspend , £283,000, is being considered with a view to the cash limited budget being adhered to."
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Various Articles : Diagnosing and coping with autism
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Posted by sylvia on Thursday, March 23, 2006 (15:54:59)
Michigans Thumb
By Matt Treadwell
The clock on the wall reads five minutes to 4 p.m. as 3-year-old Kaitlyn Lempert runs to her family's living room window asking, "Where's Logie?"
She has her answer about 10 minutes later when her 6-year-old big brother steps off the school bus that stops in front of the Lempert's home.
"Sissy. Cuddle. Please," requests Logan Lempert before his mother can help him take his coat off after he enters his home.
"See," his mother, Donna Lempert says. "Every day, it's the same thing."
Logan's three-word demand has become a Lempert family tradition after he returns home from a long day of kindergarten. It's the cue for the family to retire to the upstairs parent's bedroom for a 15-minute cuddle session.
"It's how he unwinds from the stress of his day," Donna Lempert said. "We all lay in bed together and he burrows underneath all the pillows."
"He's like a bear," little Kaitlyn added.
That daily tradition is just one of many signs of Logan's every day struggle with autism.
"It's not uncommon for kids with autism to like to stand on their heads for a long time or burrow under things like pillows," Donna Lempert said. "They like to feel pressure. It makes them comfortable for some reason."
What Is Autism?
Logan is one of an estimated 166 children born in the United States each year to be affected with the neurological disorder known as autism.
"Autism is a complex developmental disability that typically appears during the first three years of life and is the result of a neurological disorder that affects the normal functioning of the brain, impacting development in the areas of social interaction and communication skills," according to the Autism Society of America's website, www.autism-society.com.
"Autism is hard to describe because there is such a wide spectrum of what autism is," said Sara Vanmullekom, president for the ASA's Saginaw Bay Area Chapter.
"(People with autism) tend to be in their own little world. That is where they feel comfortable. Anything that is going on around them in the outside world is difficult for them to deal with — it's uncomfortable."
Like Donna Lempert, Vanmullekom has a 6-year-old with autism. And both women said an inability to speak was the tell-tale sign of the toddler's disability. They said instead of speaking, the young boys would make grunting noises and point for things they wanted.
"Noah was our fourth child, and when he wasn't starting to speak, I knew something was going on," Vanmullekom said.
But for Donna Lempert, the problem wasn't so obvious.
"Logan was our first child, we just thought he was developing a little slower than the other babies," she said. "You read in pamphlets that kids are supposed to do such and such at such and such an age, we just thought he was a late bloomer.
"When he was 3 and still not talking, I knew something more had to be going on, but I didn't know anything about autism ... That's why it's so important for people to know the signs."
Some of autism’s most common symptoms can include a child’s tendency to spin objects, insistence on sameness, sensitivity to textures, use of gestures instead of vocal language to express needs or wants, preference to be alone, or extreme emotional and physical displays.
Or, the child could appear to be deaf, Vanmullekom said.
"I used to bang on the table as hard as I could with my fist and scream Noah's name," she said. "He wouldn't even acknowledge me."
Regardless of whatever symptom an autistic child might display, his or her actions — or inactions — are the best clues.
"When people think of a special needs person, they expect to have something that they can point to and say, 'Look, that's what's wrong.' But autism isn't like that," Vanmullekom said.
"To look at my son, for example, he doesn't look like anything is wrong with him ... Children with autism look like any other children except for when they have a sensory overload. That's when they throw a tantrum — they just can't help it."
It's those tantrums that Donna Lempert said often make it difficult to take family outings — not because of her son, but because of the looks from others.
"People look at you like, 'Ugh, can't you control your kid, lady?'" she said. "They just don't know. They don't know that the child can't help it — their senses have just been overloaded by what's going on around them. You can't always predict when that is going to happen."
For example, Donna Lempert said she once took her children to ride ponies at a fair.
"I didn't know if Logan would get up there and freak out when he touched the pony or not," she said. "So, I explained his situation to the man running the ride just in case he might need to stop early ... But Logan loved it. He didn't want to stop. He kept saying, 'Horse. Again. I hoped he'd like it, but I couldn't predict it ... Every experience is like a whole new adventure."
Twenty-Four, Seven
For parents like Donna Lempert, there is nearly no time off helping her son.
"From the time he gets up until he goes to bed at night, it's a constant battle to keep him engaged," she said. "If I let up for even a few minutes, he slips right back into his own little world."
"It's easy to see," added his father, Tony Lempert. "It's just so obvious. You almost can't believe it."
With Logan in full-time kindergarten classes this year, Donna Lempert admits she welcomes the break she now gets during the day.
But while Logan is home, she spends the morning helping him get ready for school, and the evening reading with him, building puzzles, playing with educational toys, or any other therapeutic activity designed to engage his mind. And that's on top of helping to take care of meal preparation and other duties for the other two members of her family.
"Good old fashioned family meals stopped happening around here a long time ago," she said. "There just isn't the time."
And time isn't the only demand of autism, it takes its toll on family finances, too.
Each week, Logan attends two one-hour professional therapy sessions designed to help manage his autism. He goes to the Abilities Center in Commerce Township for occupational therapy aimed at his motor skills and sensory issues, and a speech therapist visits his home once a week.
His therapy bills add up to about $880 a month — none of it covered by health insurance as Michigan law doesn't require companies to pay for autism-related treatments.
Before he began attending school full time, he was enrolled in more than $1,300 worth of therapy each month to help him prepare for that major life step.
"It's like making a second house payment," Donna Lempert said. "This family is drained — we've taken out a second mortgage and our credit cards are maxed ... But like Tony says, 'We will find a way to make it happen.' We will take care of our kids no matter what the costs."
In May, residents of Huron County donated about $10,000 to help with Logan's autism treatments during a benefit fish fry at the Rapson Sportsmen's Club. It was the second such event co-organized by the boy's grandparents, Dolores and Leonard Goniewicha — a former Harbor Beach city councilman.
The Lemperts say they now are considering moving to one of the reported 17 states that require insurance to help with autism related expenses.
"It's sad, but I just don't know how much longer we can manage to get by here," she said.
Such a move would be the family's second relocation because of their children's health needs.
After Kaitlyn was born and diagnosed with cystic fibrosis in 2002 following Logan's autism discovery, the family moved from its newly constructed home in northern Michigan to Commerce Township near Novi to be closer to medical care.
Fortunately, Kaitlyn's treatments are covered by health insurance.
"It's a little funny because we waited several years to have kids after we got married. We thought we had planned pretty well," Donna Lempert said.
"Yeah, we had all the toys," Tony Lempert added. "We thought we were all set."
Still, both parents agree they'd give up everything they've had to part with all over again to see their children receive the treatments they need. And both say they are thankful to have one another's support through all the stresses life throws their way.
"I've read several places that the divorce rate for couples with an autistic child is like somewhere around 80 percent," she said. "That's scary ... It's really hard. Thankfully, Tony is so supportive. I couldn't imagine going through this alone."
Early Intervention
Despite the future hardships that might be in store, the sooner a parent can get a suspected autistic child diagnosed, the better chance pursued therapies will have to help him or her manage the disorder through life, according to the Autism Society of America.
"Discovering that your child has autism can be an overwhelming experience ... While there is no cure for autism, there are treatments and education approaches that may reduce some of the challenges associated with the disability," according to ASA's website.
Just as is the case with the numerous symptoms and severity spectrum, autism's treatments vary, too," said Vanmullekom from the group's Saginaw Bay chapter.
"That's just another one of the many mysteries of autism," she said. "We learn more and more as we go. You just have to hold on to what works best for your individual child."
The AMA reports the learning curve of autism has grown exponentially among professionals in the field as compared to a generation ago, when "many people with autism were placed in institutions."
During the 1990s, the number of documented autism cases in the United States grew 172 percent while the American population only increased 13 percent, according to the organization.
And while options on the right treatment approaches may vary for each individual person with autism, Vanmullekom said professionals agree that the earlier a child is diagnosed, the better.
"Ages 2 to 7 are the most important to begin intervention treatments," she said. "That is when the best chance is to reprogram these children because their brains are still forming. After that, habits start to really sink in."
As for the Lemperts, they say they wish they could have had Logan diagnosed sooner than age 3.
"We just didn't know about it soon enough," Donna Lempert said. "He's been doing very well with the therapies he has received ... I'd hoped he'd be able to enter full-time kindergarten by now, and he has met that goal. But still, you always wish you could do more for your kids."
She and Tony Lempert said despite how much the news your child is autistic can hurt, having him or her diagnosed as soon as you suspect the disorder is best.
"Some parents are afraid to have their children tested because they don't want their kid to be labeled as having a problem," she said. "That's just not fair to the child. They need help."
"It is hard to swallow — no question," Tony Lempert added. "I wanted a little boy who I could play sports with and who could help me with projects around the house, but Logan just can't do that. I wish he could, but he can't ... I still love him just as much. That stuff doesn't matter that much."
Donna Lempert said she hopes every day that she makes the best choices for her son's therapies so that life will become easier with each passing day.
"Sometimes I wish I could just climb inside Logan's head to see the world how he sees it," she said. "I just want to understand."
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Various Articles : Hell of the carers driven to breaking point
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Posted by sylvia on Thursday, March 23, 2006 (15:13:34)
The Observer
By Anushka Asthana
'The lack of sleep was crippling. It felt like torture.' In the first six years of her son's life Gail Hanrahan never slept for more than two hours.
The boy, Guy, who is now 15, has Angelman syndrome, a severe learning disability that means he has the mental abilities of a toddler. Gail, 42, changes her son's nappies as he is doubly incontinent, washes him, dresses him and feeds him. He rarely sleeps.
'You just can't keep it up physically or emotionally. It was affecting my relationship with my husband and impacting on the way I was parenting my other children. I was depressed.'
When her son was five his mother reached breaking point and called social services in tears. 'I remember saying "if you don't do something I am going to be a single parent or you will have to take him". I had to ask for help and I felt like a failure.'
What Gail desperately needed was a break but it was support she did not receive until she was ready to crack.
She is not alone. Tens of thousands of carers across Britain are at 'breaking point', begging the authorities for help but to no avail.
Many are depressed, stressed and exhausted from years of sleepless nights. Only one in five ever gets a break.
But instead of finding more money to help families such as these, local authorities are preparing to cut services, The Observer can reveal. A new report by the Association of Directors of Social Services warns that, if things don't change, local authorities could have to close down care centres, raise eligibility barriers, divert money from other areas or raise council taxes.
Struggling to cope with the lack of funds, councils overspent their budgets by £44 million last year, and the study's author predicts it will rise this year closer to £90m. By next year, some will have no choice but to cut back.
It is something that infuriates Hanrahan, who has seen services close down around her. In her county of Oxfordshire she has seen six respite care centres cut back to two.
Just down the road, in Buckinghamshire, a tragic case has spelt out what can happen if people are left without support. For 36 years, Wendolyn Markcrow had devoted every hour she had to her son, Patrick, who had Down's syndrome. But her life as his sole carer worsened seriously when he reached his twenties and developed autism.
Patrick began repeatedly hitting himself in the face. In July 2003, he blinded himself in his right eye. He would hit his mother when she tried to control him and regularly threatened to kill her.
Chronic insomnia kept him awake for most of each night and he would scream and shout, having the 'tantrums of a three-year-old'. His mother repeatedly pleaded with the authorities for help, but little was done.
Last Easter Monday - after Patrick had spent the day shouting 'Elton' and playing the same Elton John song over and over - Mrs Markcrow snapped. She gave her son 14 sleeping pills and suffocated him.
She then swallowed pills herself and tried to take her own life. 'I snapped. I went crazy - I didn't know what I was doing,' she told police.
Despite her crime, the overwhelming response to 67-year-old Mrs Markcrow's case has been sympathy. Her oldest son, Martin, described her devotion to Patrick as 'saintly'. Even the prosecution at her trial called for her to be spared prison.
Last week Mr Justice Gross showed Markcrow mercy and kept her out of jail for the manslaughter of 36-year-old Patrick, calling her case a 'real tragedy'.
Her story is extreme, but her situation was, and is, in no way unique. If her council had found the resources to give Markcrow more support, her son might still be alive, campaigners say.
But instead services are being cut back across the country, as the ADSS report, Pressures on Learning Disability Services, shows. 'We are between a rock and a hard place,' said Anne Williams, chair of the association's resources committee and the author of the report.
'More children [with learning disabilities] are surviving into adulthood and more people are living longer. These demographic pressures are the rock. The hard place is that this is not a priority for the NHS.' Her study predicts that, by 2011, the government should be spending £800m extra each year to meet the needs of 21,000 extra adults with learning disabilities. But it says the Department of Health has frozen spending.
Giving the carer the occasional break by taking their son or daughter into a care centre is crucial in helping to prevent a repeat of a case such as Markcrow's. Parents often have to look after their offspring 24 hours a day, seven days a week.
Seventy-six per cent of parents caring for sons or daughters with learning disabilities suffer depression, 72 per cent lose sleep, 51 per cent have financial difficulties, 32 per cent trouble at work, 22 per cent housing problems and 10 per cent domestic violence. The study of 2,000 parents says nearly a quarter suffer four or more of the problems.
'That is a powerful combination,' said Jill Harrison of the charity Contact a Family, which did the research. 'It is very difficult to have a planned short break from the local authority. It should be a preventative measure. Often it is a crisis response.'
Angela Browning, Tory MP for Tiverton and Honiton in Devon, only received support for her son, now 33, who has Asperger's syndrome, when she was desperate. 'If you don't give them a break, they themselves will break,' she said. 'When that happens it is not only crisis for the carer but for social services.'
The charity Mencap wants councils to give carers a minimum of 52 nights off a year. David Congdon, its head of campaigns and policy, said: 'Some [of the people cared for] are fed through tubes, or by a spoon, or need to have their nappy changed. They may have epileptic fits. There may not be adult changing facilities. Most of your waking time can be spent caring.'
In Oxfordshire Mrs Hanrahan has been fighting for more than a decade to get support for people in her position. The mother of three from Chalgrove knows how bad it can get. 'People experience sleepless nights with a newborn baby. Imagine that for 12 years,' she said.
Bringing up a disabled child was an 'extraordinary parenting experience' where her two daughters, Tilly and Olivia, grew out of things that her son never did. 'Going to the dentist is a nightmare because he won't open his mouth or stay still, so he needs a general anaesthetic every time. He won't wait in queues. I can't take him to friends because he will go through cupboards.'
After calling social services Mrs Hanrahan managed to get a carer for one night a month, allowing her time to do things 'other people take for granted' such as having a bath or reading to her daughters. After years of more fighting she got Guy into a respite centre for four nights a month. 'That is considered a large package.'
That help kept her off Prozac and saved her marriage, she said. Mrs Hanrahan has since been campaigning for other parents, and said she was shocked by the numbers who were on antidepressants.
She is furious about the cuts: 'You can't cut something that has already been torn back to the bone. Every time there are cuts they take from vulnerable people - we're the ones who don't have time or energy to fight. Our kids don't have a voice. My son is lovely, he has a smile that lights up the room. He is not the problem.
'It feels like if you are aren't fighting to get a service you are fighting to keep one. There are no government targets in this area because we aren't vote catchers.'
Government reports said the right things but failed to deliver. 'Things have got worse,' she said. 'The only time people turn to us is when there is a tragedy. When a mother reaches the point that she kills her son.'
Mrs Hanrahan has been following Mrs Markcrow's case. 'When they say they offered respite care to her, when was it offered?' she said. 'Was it when it was already a crisis? Crisis management is bad management.'
Such parents have to battle for every little thing they get. One mother with a seven-year-old daughter with a learning disability and a two-year-old son kept a diary of how many appointments she had with professionals. There were 774 for her daughter compared to just 29 for her son. She had spent 4,942 hours in appointments and driven for 11,004 hours.
Despite all the calls for more money, campaigners say the government is moving in the opposite direction. Providing breaks for carers is not a statutory right so there is a postcode lottery as to whether a council will do it.
The government has removed ring-fencing from the carers' grant given to authorities. 'We have no way of knowing how much money intended for carers is being spent on mending roads,' said Olivia Belle from the Princess Royal Trust for Carers. 'Carers save the nation £57 billion a year - how much is spent on supporting them?'
The answer appears to be too little, and soon it will be even less. Yet campaigners believe a little money for preventative support could stop carers suffering from stress and depression. Pushing this up the priority list, they say, could prevent a repeat of what happened to Wendolyn Markcrow and Patrick.
The costs of caring
Two million people a year become carers and three in five are carers sometime in their lives.
The Carers Allowance is £45.50, the lowest earnings replacement benefit. More than 80 per cent of mothers caring for children with learning disabilities do so full-time. Loss of income, matched with the costs of raising a disabled child, mean families are much more likely to end up in poverty. Carers are twice as likely to have mental health problems if they provide substantial care.
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Various Articles : Noise annoys autistic children
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Posted by sylvia on Thursday, February 09, 2006 (07:48:55)
Massey University November 2005
A new study of noise in early education has found children with autistic disorders are among the most severely affected of any group of children in early education. Some gifted children are also affected.
“We wish to highlight the serious nature of early childhood centre noise and encourage everyone to think seriously about how we can improve the learning environment for these children,†says Stuart McLaren, Senior Lecturer in Health Science at the Wellington campus.
A wide range of groups of children with special education needs were considered in the study, along with young children in general. These include children with autism, Asperger syndrome, Down syndrome, ADHD, global developmental delay and the hearing impaired. While all these children are seriously affected by noise, the effects on autistic children in general are far more severe.
Mr McLaren says the wide range of noises affecting children include general classroom noise, school bells, machine noise from fans, vacuum cleaners and lawn mowing, and unexpected noises such as dogs barking and road works.
“While their hearing may be normal, autistic children process auditory information differently. What others perceive as normal and tolerable can be extremely intense and painful to them. Noise can have two serious effects on these children. First, it causes them pain, distress and confusion, and second, it erodes their ability to communicate and learn,†says Mr McLaren.
“We intend to investigate a wide range of strategies to help these children. We have already seen some excellent individual strategies, which could be developed further. These include providing quiet spaces, and using a ‘traffic light’ system.
“Much of the present work is focused on these children being integrated into regular early childhood eduction environments. However we must look more closely at the learning environment too,†he says.
“Why it is acceptable to expect autistic children to negotiate their way around any such environment when we never expect children with physical disabilities to negotiate their way up a flight of steps?â€
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Various Articles : 10 Things an Autistic Adult Wishes You Knew
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Posted by sylvia on Saturday, December 17, 2005 (13:27:40)
XTVworld October 2005
By Amy Nelson
The group of autistic adults felt that the parents list was not accurately reflecting autism, particularly for adults on the autism spectrum.
Autism is a lifelong condition, though media articles usually focus on how it affects young children.
Autistic children grow up and become autistic adults, each with their own particular needs, support requirements, and opinions.
This is the list -
1. I am autistic, not just an adult with autism. It is part of who I am.
Autism is a part of who I am. I was born this way. I would not choose to change that.
Acknowledging my autism as a part of me is entirely compatible with respecting me as a person with thoughts, feelings, and talents. I am a human being like everyone else and deserve the same dignity and respect that any one else deserves.
Please consider whatever term I prefer and do not use language that suggests I suffer from an unfortune disease.
2. Autism is a neurological variation, not a disease, or mental illness. Autism often includes differences in social behavior and practical skills.
My behaviors and learning styles might vary. My perceptions may differ. I may learn and understand things in way thats different and process the world in a different way. Please do not judge me or other autistics for our differences.
3. Who I am and what I am capable of is not defined by medical diagnosing criteria. I am born with my own set of abilities and difficulties, autism included.
Those who use it to tell me who I am and what I can do are using it as a sterotype.
Please do not make generalisations and assumptions about me or other autistics.
4. I am not going to be cured.
Nothing will change me, and if it could, it would destroy who I am completely and would leave me worse off.
I have the right to refuse questionable or risky treatments. My life is my own, I do not want to be cured and I think the idea of curing me and other autistics is wrong. Please respect my individuality and do not try to fix me, because I am not broken.
5. I may be your adult child, but my life is own.
Parents do not have the right to choose questionable or risky treatments without my consent. I have my own mind. I can think for myself. I know what I want and don't want.
6. Focus on the positives of my, and others autism, I am living my life as best as I can, I want to make the most of it every day.
Talking negatively about autistics and focusing on our weaknesses all the time causes me and other autistics emotional distress. Please do not use language that suggests that being autistic is bad.
7. I am a logical thinker, that is one of my strengths.
It can make me take words literally, or misunderstand jokes. Also I may be misunderstood equally by others, if you do not understand my own logical style. I do have my own sense of humour that is unique to me, it's a stereotype that autistics have no humour.
8. Socialising is not always easy, if I don't want to join in, thats my choice, and I will avoid a situation if I am uncomfortable with it. I am not trying to be'rude' or impolite. It is simply better for me to participate socially when I choose, rather than feeling forced.
9. I do have emotions, autistics are not emotionless like some stereotypes suggest. However, I may express them in a different way.
What may make someone else cry, can be different for me, it doesn't mean that I don't care, or am an uncaring person. My facial expressions might not always reflect my emotions.
10. If you have an autistic adult in your family, try to find out information about autism.
Many articles in the media only concern children, try and find out the differences in an autistic adult. Some autistics do get married, have jobs, leave home, some don't, we are all unique.
Please do not use language that suggests that being autistic makes a person violent.
It is hoped that the list can bring greater awareness of how it feels to be autistic, and educate people that neurological differences can have positives aswell as negatives.
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