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CARE

* As Parents Age or Die, More People Are Assuming Care of Disabled Siblings

* Community Living Supports For People With Developmental Disabilities

RESEARCH

* New Effort To Track Environmental Links To Disease

* Connecticut Also Gets 'Health Tracking' Grant From Feds

* School for the Autistic Is Part Of New Study

TREATMENT

* Autism 'Breakthrough'

* Readers' Posts

 

CARE

As Parents Age or Die, More People Are Assuming Care of Disabled Siblings

[By Daniel Mont Special to The Washington Post.] http://www.washingtonpost.com/wp-dyn/articles/A56664-2002Oct7.html

Back in 1996, Pat Carver of Falls Church was not her brother's keeper -- not yet.

Jimmy, her older brother who has autism, was living in an institution she abhorred, but she thought there wasn't much she could do about it. Her ailing father -- Jimmy's guardian -- refused to discuss Jimmy's situation and wouldn't move him, even though the institution was being sued for abuse against several residents. But beginning to sink under the weight of Alzheimer's, her father left a letter from a Virginia official in plain view. The letter stated that a signature by a responsible family member would authorize the state to move Jimmy to a different home.

Carver didn't hesitate. She signed her name and rescued her brother.

The transfer from parent to sibling of the caretaker's role for a person with serious mental disorders or developmental illness is not always so dramatic. But the experience is often complicated, emotionally trying and, thanks to several factors, increasingly common.

Part of the reason is demographic: The aging of the baby boom has brought unprecedented numbers of those with mental disorders into middle age. In addition, improved medical technologies are extending the lives of some people with disabilities so dramatically that many now outlive their parents -- something that would have been unlikely a generation ago. For example, in 1968, only a small number of those with Down syndrome made it past their first birthday; by 1997, according to the Centers for Disease Control and Prevention, the median age of death had become 49, thanks to improved ability to treat the congenital heart defects and respiratory infections that often accompany the condition.

At the same time, social policies and tightened state funds have discouraged institutionalization of all but the most disabled patients and promoted living and working in the community for those with developmental disabilities, as well as mental illness. "This increase in community-based care has required families to be more present as a support. Professionals come and go, but the family is always there," says Ellen Lukens, an associate professor of social work at Columbia University.

Some five million people have assumed or expect to assume responsibility for a dependent brother or sister, according to Don Meyer, director of the Sibling Support Project of The Arc of the United States -- a leading advocacy organization for people with mental disabilities. But the number, derived from government statistics on adults with mental illness, can't be verified because no agency tracks this population. A 1996 study by Marty Krauss, a professor of disability studies at Brandeis University, found that about 60 percent of siblings of people with mental retardation and 30 percent of siblings of the mentally ill expect to be their brother's or sister's caretaker. Approximately one-fifth of these siblings expect to care for their brothers and sisters in their own homes rather than just monitor or supervise the services they receive elsewhere.

The logistical, financial and emotional dimensions of a transfer of responsibility can be intense. "[That] people with disabilities are living longer and are no longer in institutions . . . are good things," says Alan Wooten, director of mental retardation services for the Fairfax/Falls Church Community Services Board, "but when an aging caretaker dies, it's left up to the remaining family to navigate the system."

But even before they can tackle such challenges, many siblings prepared to become caretakers have to surmount a more immediate obstacle: winning the consent of elderly parents.

Clash of Wills

Why might a parent be unwilling to even discuss transfer of responsibility to an adult child?

"Parents sometimes shield their adult children without a disability from a lot of the intensive caregiving that goes on in that family. They do this with the best of intentions, but then siblings find a huge weight of responsibility thrust upon them. They are clueless about what the plan was," says Jeannie Cummins, director of advocacy and programs at The Arc of Northern Virginia.

Other times, parents don't want to cede control to a child who disagrees with them on which support services are appropriate. "Congregate facilities for living and working" -- such as large-scale group homes and sheltered workplaces -- "are offensive to me," says Mark Russell, executive director of The Arc of Northern Virginia. "But [this kind of segregated environment] was manna from heaven in the 1970s. Our parents worked hard for them and needed them. They still love them."

Sometimes, too, parents don't want to admit they've become dependent on either the companionship or physical help that a child, even a mentally disabled one, can provide. "Sometimes," says Cummins, "parents don't want them to leave because they depend on them for some of the legwork around the house. Siblings get frustrated because in their minds the parents are overprotective. The siblings see opportunities [for their brothers and sisters to gain more independence] that parents can't or don't want to see."

A North Dakota woman, referred to The Washington Post by the Sibling Support Project, says she has gingerly approached her mother for years about planning for the future of her mentally retarded brother. Her mother refused, she says, treating any suggestion about his care as criticism. But since the older woman suffered a heart attack last year, she has begun to relent. Still, she is obstinate in her shunning of social services as a care solution. Her daughter, who asked that her name be withheld, understands why.

"[My brother] is not only mentally retarded, but also deaf. When he was in kindergarten, there was a teacher who tried to teach him to read lips," she says. "When he wouldn't look at her face, she hit him. [My brother] would have fits when he boarded the school bus. He was terrified of going to school. My mother said, 'That's enough!' and kept him home. My mother has never trusted the schools or any other social programs since."

"Now he just sits around the house and eats," she says. "He weighs over 350 pounds." Her mother, who is barely 5 feet tall, takes care of all his needs. "She cares for him in ways that, frankly, I never could."

The complexity of sibling relationships in general -- and these sibling relationships, in particular -- says Meyer, can compound the guilt and resentment that can accompany intergenerational transfers of responsibility. He describes many brothers' and sisters' attitudes toward their dependent siblings as "intense ambivalence," often still bearing traces of anger at the additional demands their siblings placed on their parents when they were growing up.

This ambivalence can be heightened for siblings of those with late-onset mental illnesses like schizophrenia who often don't have a whole lifetime to grow into a supportive role. "Later diagnosis makes a huge impact," says Xavier Amador, national director of research and practice at the National Alliance for the Mentally Ill, "because it can lead to unrealistic expectations. Separating the illness from the person is far more difficult than with mental retardation."

That problem, at least, is one the North Dakota woman doesn't face.

She has suggested to her mom that they ask social services for assistance with in-home care. But her mother says she doesn't want strangers snooping in her home or telling her she has not done right by her son. She is not swayed by her daughter's reassurances that services for people like her brother are different now than they were 40 years ago.

The daughter is frustrated. "My mother is hanging on by sheer will," she says. "She has a pacemaker. What if she has a heart attack when she is alone with [my brother]? He can't call for help. How long will it be until someone finds her? I tell my mother, let us plan for [him]. When you die, I want to be able to grieve for you. I don't want to be caught up in a social service emergency, resenting you."

Limited State Help

The availability of services for people with disabling mental and developmental disorders varies by state. But, in all three local jurisdictions, budget limitations have put the squeeze on services at just the wrong time for siblings reaching middle age. "The aging of baby boomers and their caregivers is starting to put much more of a demand on state and local services," says Martha Adams, director of Virginia's Office of Mental Retardation.

State funds can be matched by federal funds if the disabled person qualifies for Medicaid -- the primary source of funding. Eligibility is determined separately by each state, but is based on the income and assets of the recipient.

Medicaid payments in such cases go toward residential services, day support, in-home services, supported employment, pre-vocational services, home modification, assistive technologies and skilled nursing.

But when a state exhausts its annual funds, the federal match is no longer available, and applicants must wait for help with housing and other services. In Virginia, the waiting list is 1,800 names long, according to Adams; sibling advocates say it can take years to be served. In the District, the waiting list holds 68 names, according to Deborah Daniels, of the Mental Retardation and Developmental Disabilities Administration.

For the moment, Maryland is better off. There, a 1997 waiting list initiative allotted $118 million over five years to expand residential services -- both housing and in-home assistance -- to those with mental disabilities. The funding increase provided service to more than 9,000 people -- nearly all those who applied for help during that time. Funding runs out in July 2003 and some advocates worry that, with no extension, the waiting list will begin growing again.

When there is a waiting list, preference for residential services generally goes to applicants with older and presumably needier caretakers -- usually parents. Sibling advocates bristle at the impact of this policy. "The potential burden goes to siblings," says Russell, "because of the inadequacy of how the state is regarding its own responsibility."

In Virginia, Adams acknowledges the problem. "There aren't enough funds to serve everyone on the waiting list," she admits. When demand exceeds funding available, she says, "the family" -- often siblings -- "must provide."

Not all the costs of assuming responsibility for a sibling, though, are financial, as Felix Gyi, 46, of Bethesda, found out.

Gyi's experience wasn't as dramatic as Carver's or the North Dakota woman's, but being responsible for his sister, Diane, 36, who has Down syndrome, is still intense. "Diane is another child for me," he says. "It's a very emotional thing to provide for the long haul. Of course I will do it. I love Diane, and she is very much part of our family."

Growing up, Gyi always knew that he would be his sister's caretaker, but the responsibility came sooner than he thought. His mother was diagnosed with breast cancer in 1986 when he was in graduate school in Pittsburgh. They had extended discussions about Diane's needs and Gyi's responsibilities, and because of the acuity of his mother's condition, they were able to move Diane up on the waiting list for residential services. Gyi returned to the Washington area upon completing grad school so that Diane could remain in the house where they grew up.

Today, four years after their mother's death, Diane receives structured support for independent living through Jubilee, a community residential service provider funded in Maryland primarily through Medicaid. But the transfer of responsibility exacted a high price in family relations: the estrangement of a third sibling, a brother. Gyi suggests the outcome was "maybe a function of [the brother's] not being able to cope with a family member who is that dependent."

Acceptance

Not everyone wants his or her dependent sibling living away from the family. Julie Calhoun, 35, fully intends for her brother Jared, 21, to stay with her in her Alexandria home. Jared, who is profoundly mentally retarded, also has autism and slight cerebral palsy and requires a feeding tube in his stomach. Calhoun looks after both him and their father, who is recovering from a heart attack, fighting prostate cancer and awaiting a hip replacement.

"I can't leave Jared with anybody," Calhoun says. "He has so many needs you can't just drop him off." Besides, she adds, being autistic Jared has a good deal more trouble integrating new people into his life. When asked what will happen when she is no longer around, she says she is in denial. She'll deal with that later.

But don't speak to her about her "burden." Like many who have assumed responsibility for a disabled sibling, she doesn't feel the term is appropriate. "When my mom was dying, she asked me what I was going to do with Jared. Was I going to give him up? She told me I didn't have to deal with this. But I don't feel this is a burden," says Calhoun.

Perhaps it takes someone who is in that position to fully understand the sentiment. Someone, for example, like Gyi. He puts it simply: "My sister enriches my life."

Daniel Mont is a Washington area freelance writer specializing in disability issues and the author of "A Different Kind of Boy: A Father's Memoir About Raising a Gifted Child with Autism." © 2002 The Washington Post Company

 

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Community Living Supports For People With Developmental Disabilities

http://www.newswire.ca/releases/October2002/07/c8771.html

Toronto CNW - Since 1974, the Ontario government has worked closely with community agencies, advocacy groups, and people with developmental disabilities and their families to move away from segregated institutional living towards a more integrated approach within the community. This government's philosophy has been to provide people with developmental disabilities with opportunities to live meaningful lives close to their families and in their community.

- The ministry spends over $1 billion to fund and manage a system of supports and services for children and adults with developmental disabilities and their families.

- Services are delivered by more than 400 community-based, board- operated, non-profit transfer payment agencies throughout the province.

- An estimated 48,000 children and adults receive developmental services and supports mostly in their family home or in a supported community environment.

- Since 1996, the Ministry of Community, Family and Children's Services has invested more than $230M in new funding for the developmental services sector.

- In May 2001, Ontario made its largest investment in the developmental services sector with the announcement of $55M in funding in 2001/02, growing to $197M over current levels by 2006/07. Funding for 2001/02 included:

- $31.7 million to support developmental service agencies to attract and retain more quality caregivers;

- $12.8 million to enhance a range of community services to support individuals and their families, including Special Services at Home, day programming, and out-of-home respite; and

- $7.3 million to support new places to live in the community for people with developmental disabilities, including adults who are currently living at home with aging parents.

- The government also committed another $67M over five years to create new places to live in the community.

- In the June Budget, an additional $49M was announced for year-two of the multi-year plan with a renewed commitment to the investment of $67M over five years to build new places to live for people with developmental disabilities in communities. $15M in capital has been allocated for 2002/03.

- Since 1974, approximately 6,000 residents of facilities have moved to and been supported in community settings.

- A four-year Community Living Initiative, started in 1996, provided community living opportunities for 978 people with developmental disabilities who resided in provincially operated facilities.

- The ministry remains committed to supporting community living and the eventual closure of the remaining facilities.

- Only three ministry-operated facilities remain, providing services and supports for approximately 1,100 persons with developmental disabilities.

Special Services at Home

- SSAH is a program to support families caring for a child or other family member in their home. Children and adults with a developmental disability and children with a physical disability are eligible. SSAH funding is used mainly for in-home respite.

- In 2001/02 Ontario allocated almost $64M in SSAH for children and adults. Two-thirds of this is directed to children.

Community Living Supports

- Supports can be provided in different types of living situations: independent community living, associate living or in a group home.

- In 2001/02 Ontario allocated $465M in community accommodation supports for adults and $47M for children.

Community Participation Supports

- A variety of supports are provided to assist an individual to participate in community life as much as possible. These include employment supports, life skills training, volunteering opportunities, and recreational activities.

- Respite is provided both in-home and out-of-home to provide relief to the primary caregiver. For example, a parent may need some time to do the grocery shopping or to spend some time with their other children.

- Specialized community supports to help individuals with significant needs are provided including: behaviour management/intervention programs; infant development; assessment and counselling services; and speech and language therapy.

- In 2001/02 Ontario has allocated $217.9M in community support services for adults and $73.2M for children.

Services for Children with Special Needs

- The Ministry of Community, Family and Children's Services provides over $360M for Children's Mental Health services. This includes $39M for intensive early intervention services for preschool aged children with autism.

- Over $53M is provided for the Assistance for Children with Severe Disabilities program.

- $10M is spent on out-of-home respite for children with multiple special needs being cared for at home.

- $7M is provided for enhanced respite for medically fragile and/or technologically dependent children living at home.

Disponible en français

For more information visit http://www.gov.on.ca/CSS

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RESEARCH

New Effort To Track Environmental Links To Disease

Autism and Asthma not previously monitored

[By Dorsey Griffith in the Sacramento Bee.] http://www.sacbee.com/content/news/story/4710115p-5727838c.html

Federal health officials Monday enlisted the help of California and other states in a landmark effort to track chronic diseases.

The federal government has long tracked infectious diseases such as smallpox, AIDS, and the recently detected West Nile virus, but chronic diseases and disorders such as asthma and autism, and their potential environmental causes, have never been similarly monitored.

In announcing the awards of $14 million Monday, the Centers for Disease Control and Prevention is beginning to address this discrepancy. The money will go to 17 states and three universities, including the University of California, Berkeley, to set up surveillance systems for environmental exposure and disease.

"Seventy percent of death and disability is due to chronic diseases such as cancer, diabetes and Parkinson's. These are today's new health threats," said Shelley Hearne, whose efforts as director of the Pew Environmental Health Commission pushed Congress to address environmental health threats.

Hearne, now executive director of Trust for America's Health, hopes that the tracking programs will allow states to zero in on disease clusters in individual communities -- such as the spate of lymphoma and leukemia cases among Auberry Drive residents in Sacramento County -- and act quickly to resolve them.

"Both from our knowledge of history and from current science, there are answers waiting out there," she said. "There are extraordinary prevention opportunities, but we are not even looking."

Officials hope the individual state systems will eventually form a nationwide tracking system and guide federal health and environmental policies.

Dr. John Balmes, an environmental health sciences professor at Berkeley and principal investigator for the university's CDC grant, said the awards signal an important new emphasis on public health at the federal level.

"If they have accurate data about environmental exposures and health outcomes from states, interventions can be designed to actually decrease the adverse health outcomes related to environmental exposures," Balmes said.

In California, the $971,000 grant will be used in partnership with the state Office of Environmental Health Hazard Assessment to plan a surveillance system. The money comes one year after the state Legislature passed a bill establishing an environmental health tracking network.

Paul English, an epidemiologist and the principal investigator for the state's CDC grant, said a group of experts already has assembled to determine which diseases should be monitored. Currently, county health departments are only required to report to the state certain infectious diseases such as tuberculosis and meningitis.

Once a list of diseases with likely environmental causes is established, English said, the state will attempt to link them with its environmental hazard data -- air pollution levels or known releases of toxic chemicals in certain geographical areas, for example. Eventually, he said, blood or tissue testing could help health officials make links between known environmental pollutants and human disease.

The effort pleases Anne Kelsey, director of the regional asthma management and prevention initiative of the Public Health Institute in Berkeley.

"There are a lot of gaps in our knowledge about the various, complex causes of asthma -- particularly the environmental factors," she said. "This will help us understand where to best focus our efforts."

At Berkeley, one of three universities designated by the CDC as a "Center of Excellence for Environmental Public Health Tracking," researchers will use the grant money to expand existing asthma tracking efforts.

Using statewide asthma data recently collected by the UCLA School of Public Health, Berkeley researchers will attempt to link the disease to air pollution exposure data collected by the California Environmental Protection Agency.

"If we can link these two databases, that is a first step toward having a California tracking effort for asthma," said Balmes. "If we can do it for asthma, we can do it for other health outcomes such as birth defects."

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Connecticut Also Gets 'Health Tracking' Grant From Feds

[By Don Michak in the Journal Inquirer.] http://www.zwire.com/site/news.cfm?newsid=5638481&BRD=985&PAG=461&dept_id=16

1556&rfi=6 <- - address ends here.

Hartford - Federal officials are giving the state Department of Public Health more than a half-million dollars to monitor where and when diseases like asthma, cancer, and birth defects occur and explore their potential links to environmental factors. The $565,270 grant from the Centers for Disease Control and Prevention comes out of a $14 million program Congress created to establish or enhance pilot "health tracking" programs in Connecticut and 16 other states.

Spokesmen for the DPH were not immediately available for comment today.

But the CDC grant was lauded last week by officials at the Washington, D.C.-based Trust for America's Health, a nonprofit organization where former Gov. Lowell P. Weicker Jr. serves as president of the board of directors.

No nationwide system for tracking chronic diseases and monitoring environmental exposures currently exists, and health advocacy groups like the American Cancer Society, the American Lung Association, and the American Public Health Association want programs like Connecticut's to be the building blocks of a national network.

Experts also say an extensive health tracking system could serve as an "early warning system" in the event of a terrorist attack.

"This type of system will not only warn officials of increases in diseases like asthma,'' said Dr. Shelly Hearne, executive director of the Trust for America's Health. "It could also pinpoint a surge in illnesses that might indicate a biological or chemical attack had occurred."

Connecticut is one of 24 states that track asthma. It also has a birth defects registry and a statewide system to identify children with lead poisoning.

Hearne's organization cited data collected by the Pew Environmental Health Com-mission when recently rating the Connecticut birth-defects monitoring program with a "C," saying it has "much room for improvement.''

The group also says Connecticut doesn't track developmental disorders such as cerebral palsy, autism, and mental retardation. "even though the National Academy of Sciences estimates that 25 percent of these disorders in children are caused by environmental factors."

The organization says one area where there is a local need for health tracking is Enfield, where aerial pesticide spraying of tobacco fields has

raised concerns this year. ©Journal Inquirer 2002

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School for the Autistic Is Part Of New Study

[By Brie Zeltner in the Plain Dealer.] http://www.cleveland.com/medical/plaindealer/index.ssf?/xml/story.ssf/html_s

tandard.xsl?/base/news/1034069416316330.xml

Beachwood - Monarch School, the first in Ohio devoted solely to autistic children, has joined with two Boston hospitals and Harvard Medical Center to develop a model curriculum that could be replicated in schools across the country.

The goal is to develop and test a technologically advanced method for teaching the growing number of children with this disorder.

Monarch is teaming up with a group of specialists from Children's Hospital Boston, Harvard Medical School and Massachusetts General Hospital to test the effectiveness of a technology that uses visual cues to enhance the communication and life skills of autistic children. Monarch was opened by the Bellefaire Jewish Children's Bureau two years ago, a few months before the Cleveland Clinic launched its Center for Autism School.

Autism, a type of developmental disorder caused by a brain abnormality, has no known cause or cure. Children with autism tend to have difficulty with social and communication skills and are affected by the disorder in varying degrees and at different stages of development.

The complexity of the disorder makes it difficult to treat by any single method, with early intensive education being the best way to reduce the symptoms. Public school systems generally lack the expertise and funding needed to provide these services, and are dealing with rising numbers of autistic students each year.

While the exact number of autism cases in the United States is not known, the increase noted by school administrators appears to be part of a national trend. The rise has been likened to an epidemic, with an estimated 1 in 500 children affected as compared with 4 in 10,000 40 years ago, according to the National Institute of Child Health and Human Development.

In Ohio last year, nearly 3,000 school-age children were identified as autistic, up from 1,600 in 1999 and 1,000 in 1998, according to state officials at the Office for Exceptional Children.

 

 

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TREATMENT

Autism 'Breakthrough'

[By Dr. Michael Breen, CBS2 Chicago. For our readers' information only, not intended as medical advice.] http://www.cbs2chicago.com/works/feature_detail.asp?id=000045058214&type=337

003

There has been a major breakthrough in the treatment of autism. A supplement that you can get at health food stores has been shown to make a major difference. Dr. Michael Breen reports the details.

Parents with autistic children are saying that a natural compound in a person’s body called carnosine have helped their kids. Carnosine combines with transmitters deep in the brain.

Rose Stodola a mother of autistic child said, “Almost immediately within the first week I noticed a change."

“The gym teacher came up to me and said my gosh he's like a different child,” added Maureen Sieger.

Four-year-old Nicholas Stodola would not talk to anybody. But then he took carnosine and there was a noticeable change. (Nick shakes Dr. Breen’s

hand.) Dr. Charles Chez found that kind of change was typical for 80 percent of these and other autistic children. Some jumped eight months in their reading scores and their behavior also changed. He said, “Response time, and eye contact and social awareness improved, play skills improved as a general rule."

What's really exciting is because carnosine works by stabilizing and protecting brain cells and helping patients like Nicholas may be just the beginning.

Carnosine may help patients with Alzheimer's, an illness similar to autism and it has already helped some Alzheimer patients. Carnosine's also helped some other children. Dr. Chez said, “We've had parents report improved reading skills with dyslexic tendencies...just improved test scores with kids who've had borderline attention disorder."

Soon other parents may have the same reaction Nicholas' have. “Carnoware and Dr. Chez have given us our son back,” said Stodola.

Dr. Michael Breen says some non-autistic adults claim carnosine makes them more alert and improves their memory.

Dr. Michael Chez, Autism and Epilepsy Center, Lake Bluff, IL 847-735-0300

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Readers' Posts

Single-vaccine side effects? Given our terrible experience in developmental regression after our first child's vaccines (we blame the DTaP, by the way), we are going for single-vaccine shots for the second child. Has anyone out there had experience with single vaccines, specifically any occurences of behavioral or developmental changes after, say, a rubella, measles or mumps single vaccine? larrieferreiro@netscape.net

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I would greatly appreciate any feedback or suggestions for life skills /independent living skills curriculums for a high-functioning autistic child. Andy is 13 years old. Thanks very much. Please reply to dan_strauss@hp.com

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Recently my sons pediatrician wanted to prescribe zyprexa for his major aggression and physical outbursts. This is suppose to help according to a talk that she attended and sat in on at Duke University. Have any of your children been prescribed this drug and what have been the results? Tks-Rhonda Cooper, Monteagle, TN coopertown@blomand.net

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Partners in Learning, a not-for-profit inclusive preschool in Southern New Jersey has an opening for a preschooler with autism spectrum disorder. This program includes a 35 hour one-to-one ABA program in a half day Typical preschool with non-disabled peers. In addition, each student receives one-to-one discrete trial instruction at home and practices preschool routines after school at the preschool. Parents receive home programing, training and support as well. This inclusive model is indeed rare in New Jersey. Call 856-881-0400

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Have a child with food allergies? Then we have the perfect shirt for you! These great shirts are 50/50 poly-cotton for longer durability and less shrinkage and come in youth sizes 2/4, 6/8, 10/12 and 14/16. Shirts are white with short sleeves. Price is $12.00 each. (includes shipping in the USA). To view and order, go to http://www.geocities.com/ARNFL/pinsnsticker.html

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The October 10th Morton's of Chicago fundraiser for Cure Autism Now has received a corporate benefactor donation which would entitle parents of children with autism (or people who volunteer/work with these children) to attend the reception. If interested, call Karen Beveridge at home 301-942-1429. The first 25 people will be included in the guest list. The specifics for the evening are: Reception for the grand opening of Morton's of Chicago, The Steakhouse in Crystal City, Virginia to benefit CAN Foundation. Dinner buffet and drinks. 6:30 to 9:30pm.

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My 7 yr HFA son, (left handed) no longer writes legibly. From mid Oct to Jan 03 he will be out of school. Looking for assistance in getting the writing back on track. HWT did not work with school OT. Would like this done on a weekly basis in my Los Angeles home. bonniesa@pacbell.net

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My 6 yr non verbal son started picking plaster off the wall and eating it the same time Ensure plus was added to his soy milk. Need advice on how to get it out of his nails and if there is a comparable drink that has no casein. Also need alternatives to scratching the walls - sensory related. bonniesa@pacbell.net

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I would never be able to stay on top of the wider world of autism without your invaluable newsletter. I appreciate all the stories you post, and I apologize for the critism you are receiving from other readers. Living with a child with autism and all the vaccine related complications we have dealt with over the years has put things in perspective for me. I find people who spout off about "politically correct" issues such as your person first language to be absolutely pathetic. Lets get back to the issue at hand, educating ourselves and the public and getting our children back! Thank you for all you do to contribute to that goal. God bless you & your family. Michele Simpson

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I am looking for an advocate to come with me to a state hearing with Alta Regional Center on Oct. 16th 2002, at 10 am. the issue is over revoking my severely autistic son's 15 hour home program for helping him with functional skills. I am willing to pay anyone who is qualified a minimum of $50.00-75.00 to help support our case. susan @ 916 -721-1548 in Sacramento, Calif.

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