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Dealing With the Financial Burden of Autism
By Walecia Konrad, NY Times. is.gd/6PNMH
How will this affect the rest of my family?
When Jeff Sell’s twin sons were found to
have autism 13 years ago, he, like so many other parents in the same
situation, found himself with a million questions: Will my children be
able to function? What are the best treatments and where do I find
Jeff Sell, with his sons, Ben, at
and Joe, in a family photo taken last April at an event called “Bounce
for Autism." - New York Times .
And besides those monumental
worries, Mr. Sell kept asking himself another fundamental question as
he began the long string of doctor and therapist visits with his sons:
“How in the world am I going to pay for all this?"
Autism trends, treatments and therapies
routinely make headlines. Often overlooked, though, is the financial
burden for many families with autistic children.
Treatment is extremely expensive. Direct
medical and nonmedical costs can add up to as much as $72,000 a year
for someone with an extreme case of the disorder, and even $67,000 a
year for those on the lower end of the spectrum, according to a study
from the Harvard School of Public Health.
That figure includes medical costs like
doctor visits, prescriptions and occupational and speech therapy, as
well as expenses for things like special education, camps and child
care, said Michael Ganz, the author of the study, who is now a health
“It can cost $3.2 million to take care
of an autistic person over the course of his or her lifetime,” the
More families are grappling with the
disorder than ever before. One of every 110 8-year-old children in the
United States has been diagnosed with autism — and one of every 70
boys, according to the latest survey from the Centers for Disease
Control and Prevention, released last fall. That is up from one in 150
children in a comparable report released in 2007.
“The numbers are just amazing,” said Pat
Kemp, executive vice president of the advocacy group Autism Speaks,
“Unless we attack this like a national health crisis, we’re going to
have a huge economic crisis on our hands."
Certainly families feel the financial
strain. Many health insurance policies do not cover autism treatments,
while those that do often have severe limits. And there is very little
government or private financial assistance available.
In many cases these children will need
assistance all their lives, Mr. Ganz points out. Making sure there is
money for the future is something else parents worry about.
When his sons received their diagnosis,
Mr. Sell was practicing personal-injury law in Texas, and he began
paying for many of their treatments from his own income and savings. In
2005, as he became more involved in autism issues, he joined the staff
of the Autism Society of America in Bethesda, Md., where he is now a
His sons are now 15. One, Joe, is
talkative and considered “high functioning.” The other, Ben, is
nonverbal with profound autism.
“What works for one child doesn’t
necessarily work for the other,” Mr. Sell said. “So we’re talking about
finding and paying for twice as many treatments."
In the early years, the Sell family had
some autism coverage under Mr. Sell’s health insurance. But claims for
certain therapies, tests and treatments were often denied. “I was very
aggressive about appealing those denials, and I often won,” Mr. Sell
But even with coverage, Mr. Sell found
he needed to pay enormous amounts out of pocket to come close to giving
his sons the 20 to 40 hours of behavioral therapies each week that were
often recommended. (Eventually, as discussed below, Mr. Sell was also
able to obtain financial assistance through a special part of the
Although direct financial support may be
scarce and hard to obtain, there are several autism information and
advocacy groups that routinely help parents navigate financial hurdles.
Here is a road map parents can use to get started.
+ Read more: is.gd/6PNMH
. . Read, then
the Schafer Autism Report.
year - or free!
• • •
Autistic Children Change Families' Lives
WTAE ABC 4 Pittsburgh PA
Everyday life is tough enough. But for
those with family members with
autism, it's even more of a struggle. Video clip here: is.gd/6PSKA
• • •
Communication Problems in the Brain
ScienceDaily — For brain cells to
communicate, the contacts to each other must function. The protein
molecule neuroligin-1 plays an important role in this as it stimulates
the necessary maturation processes at the contact sites (synapses) of
A synaptic maturation disorder is
possibly involved in the development of autism. Dr. Thomas Dresbach and
his team from the Institute for Anatomy and Cell Biology at the
University of Heidelberg, in cooperation with the study group led by
Professor Dr. Thomas Kuner at the same institute and Professor Dr. Nils
Brose, Max Planck Institute for Experimental Medicine in Göttingen,
have published their results in the journal PNAS (Proceedings of the
National Academy of Sciences).
One hundred billion nerve cells make our
brain a thinking machine. Each of these nerve fibers produces a long
extension, the axon, which terminates in numerous small knobs.
Transmitters are released here that transfer information to the next
nerve cell. The contact site between nerve ending and adjacent nerve
cell is called a synapse. The number and location of active synapses
determine which areas of the brain are especially active at a given
Neuroligin-1 protein necessary for
maturation The synapses of young nerve cells must mature before they
can release their neurotransmitters to the full extent. Researchers
were able to show using genetically modified nerve cells from mice that
the postsynaptic nerve cell, the receptor, must form a sufficient
amount of a certain protein molecule, neuroligin-1, to allow this
maturation process to take place. In addition, the nerve endings from
where information is sent must release slight amounts of
neurotransmitters to stimulate the neuroligin in the postsynaptic nerve
"A fully functioning contact can develop
only if both sides, transmitter and receptor of information, are
involved in the maturation process," explained Dr. Dresbach. If no
neuroligin-1 is formed, the nerve endings remain at an immature stage
and release fewer neurotransmitters; the flow of information is
interrupted. The nerve endings can only whisper, so to speak.
Autism caused by a malfunction at the
synapses? "The results are significant for actual concepts about how
autism develops," says Professor Dr. Joachim Kirsch, director of the
Institute for Anatomy and Cell Biology. Symptoms of autism are first
noticed in early childhood as an information processing disorder. The
symptoms may be more or less pronounced, but all patients display
weaknesses in social contacts and communication. "There are many
indications that malfunctions of synaptic molecules are involved in the
development of this illness. It has thus far been unclear exactly what
these malfunctions are, but we now know what to look for," says
Professor Kirsch. The study was funded by the FRONTIER program of the
excellence initiative at the University of Heidelberg.
• • •
Linked Neuroligin Gene Mutations
to Oxidative Stress
What can a worm tell us about autism?
From Autism Speaks. is.gd/6PwMm
It is sometimes challenging to relay the
importance of scientific findings about autism to the public,
especially when the animal subject of the research is far removed from
the people affected with autism spectrum disorders (ASDs). In this
case, however, James
Rand, Ph.D. and his colleagues at the Oklahoma Medical Research
Foundation have made our task easy. Their new research paper, funded by
a grant from Autism Speaks, shows how the humble round worm,
Caenorhabditis elegans, can reveal impressive - even surprising -
findings that are important to our understanding of the biological
underpinnings of autism.
Starting in 2003, a series of studies
showed that some individuals with ASD have mutations in genes coding
for proteins called "neuroligins" that are involved in the formation of
synapses (connection between nerve cells). Since then, mutations of
different synapse-related genes have been reported by several
investigators using different families of affected individuals. These
findings set the stage for the now generally accepted hypothesis that
ASD may fundamentally involve alterations in synaptic structure and
Using worms to study the effects of
autism-related mutations is not as far-fetched as it might seem.
Numerous studies have shown that C. elegans synapse proteins are
structurally and functionally equivalent to the corresponding mammalian
proteins, and it is now well established that C. elegans provides a
powerful model for analyzing synapse structure, function and
development. The worms that Dr. Rand and his colleagues study have
neuroligin in their relatively simple nervous systems, and Dr. Rand's
research group has now shown that the neuroligin protein in the worms
is quite similar to human neuroligins, and much easier to study, which
leads to the question: what would happen if worms had a genetic
mutation that completely eliminated the production of neuroligin? In
the publication Disease Model & Mechanisms, released this week, the
authors have now created and characterized neuroligin deficient worms,
finding that animals lacking in this protein not only show discrete
neurological and behavioral deficits, they are surprisingly also more
susceptible to oxidative stress.
+ Read more: is.gd/6PwMm
Schafer Autism Report
. . Read, then
the Schafer Autism Report.
year - or free!
• • •
Compulsive Dogs Yield Clues
to Human OCD, Autism
Repetitive flank-sucking in Dobermans and hand-washing in humans could
share similar DNA, researchers say
By Amanda Gardner HealthDay is.gd/6PCzk
A study of obsessive-compulsive
Dobermans might someday help explain similar repetitive behaviors in
Scientists have identified a region on
chromosome 7 in obsessive-compulsive dogs that may correlate to the
human version of the psychiatric disorder.
The gene is the same in humans, said Dr.
Nicholas Dodman, first author of the study, which appears as a letter
to the editor in the January issue of Nature Molecular Psychiatry. In
humans it resides on chromosome 18, the same chromosome which holds all
of the psychiatric genes identified thus far, he said.
"It's certainly true we have basically
the same gene in us, so it's an intriguing lead, but there's a lot more
work that has to be done to see if this particular finding is relevant
to human health and obsessive compulsive disorder [OCD]," added Dr.
Michael Slifer, an assistant professor of human genetics and genomics
at the University of Miami Miller School of Medicine.
"But even if this particular finding is
not directly relevant, it still gives us clues as to the pathways and
processes that may be going on in humans as well as some possible
targets for intervention and treatment," he added.
And, Slifer cautioned, "This gene
probably does not have as robust an effect in humans as it does in dogs
because we haven't found it yet in humans [in relation to OCD]. This
one would have come out already. But that doesn't mean it might not
still be relevant in a small subset [of people with OCD]."
Some 2 to 3 percent of humans suffer
from OCD, marked by repetitive thoughts and behaviors, such as repeated
Canine compulsive disorder seems to
affect certain breeds, notably bull terriers, which can have a tendency
to maniacally chase their tails, and Dobermans, which will compulsively
suck on blankets or on themselves.
"These are not just funny things," said
Dodman, professor of clinical sciences at Tuft University's Cummings
School of Veterinary Medicine in North Grafton, Mass. "It's a
physically injurious and life-threatening disease and can seriously
impair the relationship between owner and dog, which can lead to
"There [has been] no explanation for it
and it's clearly genetically driven," added Dodman, who is also the
author of several well-known animal behavior books.
Up to 70 percent of puppies in certain
Doberman litters can be afflicted, he said. One German shepherd bit his
tail so badly that he bled to death, he added.
"While we have known the flank-sucking
in Dobermans had to have a genetic component because it occurred in
certain bloodlines, this study confirms it and identifies where the
trait is carried," said Bonnie Beaver, professor in the department of
small animal clinical sciences at the College of Veterinary Medicine
and Biomedical Sciences of Texas A&M University in College Station.
"It provides a starting place to look at genetic relationships of other
compulsive disorders and . . . might help the understanding of
compulsive human disorders and be able to differentiate the genetic
ones from the environmental ones."
Chromosome 7 appears within the
cadherin-2 gene (CDH2), which is involved in communication among
neurons in the brain.
And cadherins, proteins that enable
cells to adhere or stick to each other, are also involved in human
obsessive-compulsive disorders. Recently, cadherins were linked to
autism spectrum disorder, also characterized by compulsive behaviors,
such as repetitive head-banging.
The Tufts researchers teamed up with the
Program in Medical Genetics at the University of Massachusetts and the
Broad Institute at the Massachusetts Institute of Technology to test
Doberman blood samples that the Tufts staff had collected and stored
for more than a decade.
Dobermans who (in this case)
compulsively sucked on their flanks or on blankets, were more likely to
have this gene sequence than healthy dobermans.
Beaver said the findings were "exciting"
and that "the number of dogs used in the study places good confidence
levels on the findings."
• • •
Autism Advocates Demand Action
From Allegheny County Officials
Pittsburgh - PRNewswire - Autism
advocates and parents of children with autism are demanding action from
Allegheny County following the release of a Census Report from the
Pennsylvania Department of Public Welfare indicating that Allegheny
County has the highest number of autism cases in the Commonwealth.
After several meetings with County
officials where parents told stories of being on waiting lists for
federally mandated behavioral health services, parents demanded that
Allegheny County and it's managed care organization, Community Care
Behavioral Health Organization (CCBHO) open their networks to new
"It's ludicrous that Allegheny County
and CCBHO refuse to open the provider networks when we have families
waiting anywhere from six months to a year for services," said Cindy
Waeltermann, Founder and Director of the Autism Centers of
Pittsburgh. "We received a letter from a physician from
Children's Hospital of Pittsburgh asking for our help for a family that
had been waiting for nearly two years for services," she says.
According to Pennsylvania State Medicaid
bulletin 01-01-05 services are legally "expected to begin no later than
60 days after the initial request."
+ Read more: is.gd/6PBvT
• • •
New York 'ACTS' Web Site Is Launched
Site is `one stop shop' for information on Autism and Autism Spectrum
ALBANY, N.Y.; Individuals with Autism Spectrum Disorders (ASDs) and
their families now have a single comprehensive resource to go to for
important information on ASDs and the State services available to
address the needs of these individuals and their families. New York
State's Office of Mental Retardation and Developmental Disabilities
(OMRDD) and the State Education Department (SED) announced today the
launch of the New York ACTS www.nyacts.org
New York ACTS (An Initiative for Adults
and Children on the Spectrum) was developed by the New York State
Interagency Task Force on Autism, a partnership of 11 State agencies,
as a way to bring reliable, current information to the public about
autism and to assist New York's families to easily find State services
for their loved ones with ASD. Because individuals with ASD may need
services from different State systems - education, health, mental
health and developmental disabilities services - NYACTS offers a
dedicated site from which people can get the information they need
without any prior knowledge of New York's service agencies.
"New York ACTS demonstrates New York
State's commitment to letting the people we serve drive what we do,"
said OMRDD Commissioner Diana Jones Ritter. "It effectively connects
people to the services they seek regardless of which system provides
it. It has resulted from and will continue to demonstrate how our
government is working together in an effective and integrated way."
"We are very pleased to have had the
opportunity to partner with the other State agencies in the development
of this website", said SED's Commissioner Dr. David Steiner. "NYACTS
represents a truly coordinated effort among State agencies. This Web
site provides a wealth of information on ASD and organized access to
services in New York State. It represents the State's genuine
commitment to individuals with ASD and their families and is especially
important given the increasing incidence of ASD."
In addition to information on autism and
New York State services and supports for individuals and families, New
York ACTS provides news stories related to ASD, the answers to
frequently asked questions, and information on important laws, events
and trainings, the network of Centers for Autism and Related
Disabilities across New York State, New York State's autism
initiatives, and profiles of New York citizens of all ages living with
ASD. A cross‐agency committee will regularly update and
maintain the Web site. As scientists and others improve their
understanding of ASD and identify effective practices in diagnosis,
assessment, treatment and education for individuals with ASD, the
committee will continue to promote and expand New York ACTS as a means
to bring the latest information to a wide range of parties.
• • •
Celebrities Lend Star Power to 'Chase the Hope for Autism' and $1
Million in Autism Funding
Chase Community Giving provides opportunity for expanded autism
the only autism organization competing for $1 million dollars to be
awarded to the charity receiving the most votes by this Friday, January
PRNewswire- Jim Carrey, Jenny
McCarthy and Deirdre Imus are among the celebrities tweeting and
posting to Facebook, urging people to cast their votes for the National
Autism Association (NAA) in Chase Community Giving on Facebook.
Autism rates have risen sharply in
recent years, with one in 110 children now diagnosed with the disorder.
Non-profit organizations including the Doug Flutie, Jr. Foundation for
Autism and the HollyRod Foundation have gotten involved in the effort
to shed light on what has become a national health emergency. "Autism
is the fastest growing childhood disorder in the country, yet is
woefully underfunded," said NAA board chair and parent Lori McIlwain.
"Facebook users have a unique opportunity to direct this funding where
it is desperately needed."
The $1 million award would allow NAA to
significantly broaden its existing assistance programs which address
the most critical needs among families impacted by autism. These
programs include Helping Hand which assists families in funding
desperately needed treatments and therapies for their children, and
FOUND which was established to combat the rise in wandering-related
deaths in the autism community. "One million dollars would have a huge
impact on our ability to reach those who need our help the most,"
commented Ms. McIlwain.
In addition to its family care programs,
NAA advocates for the most relevant scientific research, legislation
for access to medical care, coverage for medical and safety devices,
services and support over the life span and protection from abuse
towards individuals with autism. The award money would allow for
enhanced legislative and educational efforts for these crucial issues
facing thousands of families nationwide.
Other autism groups supporting NAA in
the Chase challenge include the Age of Autism, AutismOne, Autism
Research Institute, Autism Speaks, Generation Rescue, SafeMinds, the
Schafer Autism Report, Talk About Curing Autism, and Unlocking Autism.
"I urge everyone on Facebook to vote for
the National Autism Association so that more families struggling to
find real help for their children can get that assistance," said Ms.
McIlwain. "We have no greater challenge before us than finding relief
for these kids."
To vote for NAA in Chase Community
Giving on Facebook, go to voteautismnow.com
• • •
It's Time To Change Law
On Charging Juveniles As Adults
By Neil Heinen, Wisconsin. is.gd/6PLbv
The tragic case of 13-year-old
Michael Crisafulli, accused of killing his father in Sauk County this
week, raises some difficult but terribly important questions. It
certainly calls into question our knowledge as a society of
disabilities like autism if indeed that is what the youngster is found
to have, how these disabilities affect children and how we help these
But while assessment of the youngster's
abilities might ultimately result in his transfer to the juvenile court
system, the fact that he had to start in the adult system suggests
serious flaws in current law. Up until 1995 kids under the age of 18
were sent to juvenile court and their identities were routinely kept
private by the media. But the legislature changed all that, the
misguided results of a "crackdown" on juvenile crime that turned out to
be based on faulty data but never rescinded. And so we have a
13-year-old with a possible developmental disability handcuffed and
sobbing in adult court.
It's safe to say no one wants kids like
this in that situation. But it's an unintended consequence of a bad
law. It's time to change the law.
Note: The opinions expressed in COMMENTARY are those of
the author and do not necessarily represent the views of the Schafer
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