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SCHAFER AUTISM REPORT "Healing Autism:

No Finer a Cause on the Planet" ________________________________________________________________

December 12 & 15, 2003 PART 2 Vol. 7 Nos. 247 & 248

** Today’s newsletter is in two parts. This is the second.

CARE

* Landmark California Program In Budget Vise

* Tri-state Families Sacrifice To Care For Special Needs Kids

* UK Parents Outraged As Autism Cash Stopped

* Dog Helps Boy Cope With Autism

CARE

Landmark California Program In Budget Vise

l

When Gov. Arnold Schwarzenegger lifted Reese Hodge to light the state "holiday tree," the 2 1/2-year-old boy with cerebral palsy was riding on the shoulders of Frank Lanterman.

The former Republican assemblyman died in 1981. But the architect of the state's pioneering Lanterman Developmental Disabilities Services Act left a legacy that has helped sustain Reese and thousands more.

Unlike other states, which have waiting lists for such services, California does not place limits on the number of people who can receive treatment and support services.

But because of the budget crisis, Schwarzenegger has proposed capping enrollment and establishing a waiting list for new applicants to rein in one of the state's fastest-growing entitlement programs.

Schwarzenegger has long been a global ambassador to the Special Olympics, the sports competition for children and adults with mental retardation founded by his mother-in-law, Eunice Shriver.

But under his proposal to reduce "non-core" services, programs that provide state funding for participants to compete in the Special Olympics would be eliminated.

Also on the chopping block is respite care, which provides caregivers for Reese and other children to give their parents a few hours' break.

The irony was not lost on advocates for the developmentally disabled, including about 50 protesters who chanted "Shame on you" as the governor helped the San Diego County toddler light the tree Tuesday.

It was only the beginning. Hundreds showed up the next day to protest the cuts, some pushing wheelchairs near the Governor's Office. Other rallies are planned in Los Angeles on Monday and at the Capitol in early January -- during Schwarzenegger's State of the State address.

Some think the pressure will weigh heavily on Schwarzenegger. "My sense is that this is a governor who is very much responsive to the pathos of life, and I suspect he will not continue to push these cuts," said Steve Thompson, who lobbies for the California Medical Association.

In an interview with CNN on Tuesday, the governor cautioned that no "final decisions" had been made, "but the fact of the matter is that we have no money."

"It's been very difficult to make any cuts because all of those programs are, you know, important to those people," the Republican governor said.

State Treasurer Phil Angelides, a Democrat who has been one of Schwarzenegger's most vocal critics, believes the proposed cuts have added significance.

"This is a battle about who we are and what we are," Angelides told hundreds of protesters during the Capitol Park rally.

"Frank Lanterman was part of a great generation of Californians -- Republicans and Democrats -- who understood that if you took the wealth of society and reinvested it in people, we would create greater wealth for future generations."

The son of a wealthy Los Angeles County physician, Lanterman was a conservative who persuaded Gov. Ronald Reagan to sign the Lanterman Act in 1969.

Friends say Lanterman was appalled that 30,000 people with developmental disabilities were warehoused under grim conditions in state hospitals.

His legislation, amended in 1977, guarantees the developmentally disabled a right to supportive services to help them live the most independent and productive lives possible.

Lanterman argued that providing these services through community-based organizations would allow the disabled to live with their families or alone. It also would be considerably less expensive and more compassionate than putting them in state hospitals.

"In a sense, it was a conservative approach to how society should treat those least able to fend for themselves," said Thompson, who was a committee aide when the measure was passed. "It was also a liberal approach in the context that it moved beyond institutionalizing them and beyond programs that had failed."

The program is administered through 21 regional centers that serve about 190,000 residents with "substantial" handicaps.

These disabilities, which must be diagnosed before a beneficiary turns 18, range from autism to mental retardation. About 3,300 people remain in state hospitals because of disabilities that cannot be treated in community settings.

The centers develop individual program plans, which identify a person's needs and the services necessary to meet those needs.

Specially trained caregivers help families take care of clients who cannot feed, bathe or otherwise tend for themselves. Medical, transportation and job-training services are also provided.

Unlike most health and social services provided by the state, eligibility is not based on a family's financial need. With few exceptions, services are provided without any requirement that those who can afford it pay a share of the cost.

Advocacy groups have rebuffed previous efforts to require co-payments and scale back services. But with 11,000 people entering the program each year, administration officials say the state can no longer afford the entitlement.

During the past six years, they say, the annual cost of running the program has nearly doubled -- from $1.4 billion to $2.3 billion.

"Caseload has increased 25 percent, so the costs of this program are increasing four times the caseload," said Vince Sollitto, a spokesman for the governor.

Sollitto said the administration intends to investigate the factors driving up costs.

The governor's "short-term approach" of capping enrollment and scaling back non-core therapies -- such as respite care and horseback riding -- would reduce costs by about $260 million during the next 18 months.

But advocates note the administration has failed to say what would happen to people with newly diagnosed disabilities after the program is capped.

They predict the waiting list will grow by the thousands while families wait for those in the system to die or be reassessed.

"We can't control the fact more people are coming on the rolls who are disabled," said Marty Omoto, legislative director of the California Coalition of United Cerebral Palsy Associations. "What will happen to them?"

Omoto predicts families will turn to more expensive emergency care, causing additional delays in hospital emergency rooms that are already overwhelmed.

He calls the administration's number crunchers misguided for dismissing as non-core treatments such services as respite care, horseback riding and camping.

"With our folks, there are no trivial services," he said. "It's not like having (a healthy) child. This kind of therapy may be the only recreation a child receives."

Cheryl Ferri calls her son Nathan the embodiment of the cost-effectiveness of the Lanterman Act. Now 32, Nathan was born with autism shortly after the act's passage.

Because of therapy and education services, he has worked since he was 15 and is currently a recreation coach for children with cerebral palsy.

Ferri, who lives in Palm Springs, is paid $7,000 each year by the state to care for her son, who is incapable of living by himself.

"It would cost the state a lot more money if he was in a hospital and not working," Ferri said during the Capitol Park rally.

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* * *

Project Lifesaver

[From Sharon Proffitt.]

My son is a client of Project Lifesaver International. This is a wonderful organization that is operated by public safety agencies, such as Sheriff's Offices, Police Departments, Fire and Rescue, etc. Project Lifesaver places a small, electronic transmitter on people who have a disability that causes them to wander or run from their caregivers. These disabilities range from Autism to Down Syndrome to Dementia to Alzheimer's.

>From the youngest in our society to the oldest, this service is

>available.

If a person wearing the transmitter should wander or run, the caregiver calls an emergency contact number and a search is launched immediately. Using the specially designed receivers, clients are found and returned home in an average of less than 30 minutes! Project Lifesaver began in Chesapeake Virginia in 1999 and since that time, they have had over 800 rescues---everyone found and returned home safely without injury in less than 30 minutes!

Project Lifesaver is currently located in 32 states with the goal of being in every state and every country.

* * *

Mall Santas Can Be Frightening For Kids

Mall Santas should like kids [duh]

In my mother's house sits a framed picture I try to avoid. It's just a little photo in a silver frame, a photo of my mother and me, my two sons and Santa Claus.

Who could hate a picture of Santa? In the photo, my oldest son, who was 2 or 3 at the time, is crying and looking like he was in the middle of a torture session. The younger son is squirming in his haste to break away from the mall Santa.

But the worst face belongs to Santa himself. The jolly old man looks, well, anything but jolly. His eyes seem to be crying out for help, to be rescued or just put out of his misery.

Just looking at that photo brings back bad memories. My mother--who can remember when I also considered being forced to sit upon that large, red lap to be exquisite torture--just laughs at the photo.

The picture, for a long time, just reminded me of all the things I would never have. Sometime about the time of the disastrous visit to St. Nick, I had learned both of my sons were autistic.

Standing in line at the mall, I saw all the other children dressed in their holiday best bringing long lists of Christmas wishes and smiling prettily for Santa.

I overheard other parents complain about the long lists and messed-up hairdos. I would have given anything to be those parents.

Returning to my childhood belief in magic, I hoped that somehow Santa might have the magic balm to make it all better. I knew he couldn't cure autism or anything like that, but a whispered kind word, even a jolly wink, could have made me feel better.

But Santa made it clear he could barely tolerate my children, that if he had his way, kids like mine would be banned from his lap.

Another mall Santa also lacked compassion for children with

disabilities. When my son's special education preschool class took a field trip to the mall, Santa could be heard lamenting that no one warned him that kids "like that" would be coming.

I thought I had outgrown my childhood distaste for the man in red. But it came back with a fervor my childhood self could not have dreamed of.

It endured until last year, when my younger son became one of those kids with a long list for Santa. He overcame his fears and sat on the lap and smiled for a photo. I decided to call a truce.

But Santa had yet to pass the real test. Sitting there with his Christmas list and holiday sweater, my younger son appeared like any other child. Handing Ben a candy cane and promising to think about bringing him a new train set didn't require too much stamina.

I brought both of my sons to the mall on a quest for sneakers the week before Thanksgiving. Santa sat alone on his chair, with no line of children clamoring for his attention.

There was no way I was going near him. My two sons together can try the patience of a saint. And I'd already learned that St. Nick was not all that saintly.

But Xander, my oldest, had other ideas. This kid (whose past stranger anxiety included even those whose faces weren't hidden by white hair and a red hat) ran up to the old man willingly. In fact, I couldn't stop him.

He sat himself down at Santa's feet and began to play. I waited for him to be shooed away, in case a "normal" kid should come.

But Santa sat there and played with my son, tickling and teasing him, as I looked on in amazement.

To Santa, the episode was probably just a simple five-minute visit. To Xander and his mom, it was a Christmas miracle.

Raymond Edwards, who has played Santa at the Spotsylvania Mall for two years, said most Santas sign up for mall duty because they love children.

Edwards is one of those Santas. He loves "the kids, the things they say, the trust, the twinkle in their eyes when they see Santa."

"I thoroughly enjoy it," he said. "You see their eyes light up, and that makes it all worthwhile."

But Edwards cautions those Santas who don't share his love for the kids.

"If you're not doing it for the right reasons, don't do it," he said about being a mall Santa. "'Cause the kids'll know it."

* * *

Tri-state Families Sacrifice To Care For Special Needs Kids

Thousands of Tri-state families are being forced to make tough choices every day that ultimately affect whether their children live or die.

Often these children are severely disabled and because of the cost of their medical bills, their parents sometimes have to choose between food and medicine.

Two Tri-state families find themselves making the sacrifice daily so their children receive the care they need to survive.

"I'm sure he thanks me everyday in his own way," said Debbie Martin, of her 10-year old son Adam.

Martin owes money to five collection agencies and is considering taking a lower paying job so she would be able to qualify for government aid to help pay for Adam's medical expenses.

"You know, you've gotta make a lot of sacrifices with a special needs kid," said Martin.

Her son Adam has autism, A.D.H.D., a seizure disorder and is mentally retarded.

Adam's medications are fairly expensive, but when he has to be hospitalized the bills quickly add up to tens of thousands of dollars within only a few days.

"I've applied for financial assistance in the past," said Martin. "I've been able to get some of it, but I still have to pay for a majority of it."

As government budgets and programs are being cut, Martin says it looks like it will continue to get worse instead of getting better.

"They want to take the behavior plans away," said Martin, who said kids will be taken out of school without them.

"They used to be protected under the Disabilities [Act] -- they're taking away that," said Martin. "Anything that they're entitled to, they're just taking it away."

The Swanson's are in a different, but no less frustrating, situation.

Their five-year old daughter Jhanie requires nearly round-the-clock nursing care.

Although it's covered by their insurance, the Swansons still have trouble getting someone to take care of their daughter.

"We have 16-hours of nursing care a day," said her father, Jarvis Swanson. "Right now, we maybe fill nine of those hours."

This means that her mother, Aija Swanson, has to stay home from work to take care of her daughter.

"We have four kids and it's just kind of hard to take care of four kids, and keep up with the bills, with just one person working," said Mrs. Swanson.

This also prevents the Swansons from doing many things people take for granted -- such as going out to dinner together.

"When I'm off work, and we actually do something, somebody's gotta stay home," said Swanson.

Special needs physician, Dr. Ron Levin, of Childrens Hospital Medical Center (CHMC) says most people don't realize the sacrifices these families make everyday -- until they're faced with a similar situation.

"Our need as a society to better care for this population is a very important stage," said Dr. Levin. "It's just going to get worse if we don't do something about it."

Although both families agree their lives are more difficult because they have to struggle to provide for their disabled child, neither family would have it any other way.

"She's helped us all," said Swanson. "Just our faith in God, to grow a lot stronger."

"He's my life and I wouldn't change anything," said Martin

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* * *

UK Parents Outraged As Autism Cash Stopped

A Newport couple who have had all funding for the care of their autistic son stopped have told education chiefs: "You are punishing us for fighting for our family."

Police officers Andrew and Carolyn Chapman said they had received a kick in the teeth from the authority which sent them a letter withdrawing funding for three-year-old Harvey's education with immediate effect.

Telford & Wrekin education bosses say they have fulfilled their duty of care by offering the child a place at a special school.

Harvey requires special care because his autism means he struggles to relate to people.

The toddler is educated in a programme at home for £1,400 a month. But his parents lost a tribunal calling for the authority to stump up the full cost.

They had been receiving just over £700 a month towards the bill but took the case to tribunal because they could not afford the balance.

Now the authority has insisted the couple take up the offer of a place at the Bridge Special School in Telford or receive nothing.

Mr Chapman, 32, said: "They could justify supporting us before so surely they could now."

Mrs Chapman, 36, added: "They seemed to have based all their decisions on money. We feel like we're being punished for going to tribunal."

They say the programme they use is the most suitable for Harvey and they are aware of five families within the county who have received full funding.

But Mark Wyatt, head of school effectiveness for Telford & Wrekin, said the ruling and order of the tribunal was legal and binding on both parties.

He added: "We understand the parents are very disappointed by the decision and any parent has a right to educate their child at home. Nevertheless, the place will be kept open at The Bridge should they reconsider their decision."

* * *

Dog Helps Boy Cope With Autism

CM9/TPHealth/ <- - address ends here.

Jamil Shah threw long tantrums, and like thousands of other autistic children, could barely communicate with his parents.

These days, the 12-year-old is doing better. He cuddles beside his canine companion, Sherlock, whenever he's upset, he's grown aware of his surroundings, but mostly he's more affectionate.

"He's really attached to the dog. He's writing poetry about Sherlock," his mother Salma Shah said.

He would cry and scream, often becoming impatient, and at times his parents feared he would hurt himself. Now he is more calm, they say. Sherlock goes over to Jamil when he shows signs of acting up.

Jamil and his two-year-old golden retriever are part of a University of Guelph study which shows that pairing autistic children with assistance dogs can help such children become more affectionate and better connected to the world.

Cindy Adams, a professor in the university's department of population medicine, has been assessing the bond between autistic children and their assistance dogs through detailed surveys, video footage analysis and interviews.

The autistic children and dogs are matched by National Service Dogs, a non-profit registered charity that trains golden and Labrador retrievers.

"A powerful connection develops between the kids and the dogs," Prof. Adams said. "The simple presence of these dogs encourages the children to show more affection toward others."

Prof. Adams said one of the families that received an assistance dog is going to Disneyland this Christmas.

"That's something they weren't even able to consider for 12 years before getting the dog. It must be quite liberating," she said.

The study came about after the NSD saw an increased demand for assistance dogs in Canada.

Prof. Adams is continuing her research, looking at how an assistance dog helps with an autistic child's self-esteem and success in school, as well as changes that occur within the family.

She will follow six children who have just received the assistance dogs and about 45 children who have had the dogs for a few months. She will interview parents and closely monitor the amount of contact the children have with their dogs.

"There is a wealth of research on the therapeutic value that dogs have on the lives of children. But there has been minimal work on autistic children specifically," she said.

"This piece is new to our knowledge because there is no research done on the benefits to the family and the benefits to the child and also taking into consideration the role the bond places."

Autism has increased at such a rate that the Autism Society of Canada estimates one of every 286 children is afflicted with some degree of the neurological disorder. Children and adults diagnosed with autism typically have difficulties communicating and socializing with others.

The National Service Dogs organization was created after a mother was looking for an assistance dog for her autistic young boy.

Heather Fowler, executive director and founder of the centre, said the child was able to unlock the doors and leave the house. With the help of the mother, she trained a dog to help monitor the boy. So far, the centre has trained 60 dogs for autistic children. Both parents and children are trained to handle them.

The animals are trained in a fashion similar to guide dogs for the blind, with special emphasis in keeping children off roadways. A special leash and harness keep the child close to the assistance dog when outside, Ms. Fowler said.

The dogs are also trained to stick close to the child when indoors and to alert parents if the child goes out.

"We found that parents can for the first time in their lives let go a little," she said.

But the list to get an assistance dog is long. In Oakville, Ont., Ms. Shah and her husband helped to raise about $12,000 to properly train the dog. It's well worth it, she said.

"Jamil is now more aware of people and animals around him. He worries about the dog. He worries if the dog has eaten. If we're going out, he makes sure the dog is with us," Ms. Shah said. "The main thing is he now has a buddy."

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