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AUTISM FIRST STEPS
AUTISM DAILY NEWSLETTER
Thursday January 10, 2002
INDEX:
* My
stand on MMR cost me my job...but I'll fight to tell the truth
* Iowa Human Services Council Meeting, Testimony Of
L.D. Wedewer , Iowa & United States Autism
Ambassador
* Iowa Human Services Council Meeting, Testimony Of
Joyce Minor , Iowa & United States Autism
CO-Ambassador
* Learning Disability Linked
With Increased Risk of Affective Disorder
******************************
My stand on MMR cost me my job...but I'll fight
to tell the truth
From
the Mail on Sunday, January 6, 2002 - by Dr Andrew WakefieldDoctor who warned of
autism fear over controversial baby jab criticises Tony Blair and threatens to
take his research battle to AmericaLAST YEAR, after 13 years, I left my job as a
gastroenterologist at the Royal Free Hospital and University College in London,
largely as a result of the measles, mumps rubella vaccine controversy.Now that
I have left, there is one overriding priority: to ensure that children with
autism and bowel disease get the investigation and treatment they need and
deserve.Prior to my departure, the situation had become very difficult. During
the course of our investigations, my colleagues and I had at all times followed
the rules of scientific hypothesis testing, peer review and publication.Despite
this, not only was our research programme under threat, but also the provision
of clinical care for these children was under increasing pressure, in large
part because of the political baggage that the MMR issue brought with
it.However, I have made it clear that I have no intention of stopping the work.
Parents should be reassured that the current research programme will be
completed. Thereafter, I will go wherever I have to go to continue it.There are
other people in the United States doing this work and one possibility is to
continue there. One problem for such work, however, is that within the
conventional university structure it is vulnerable. Universities are
susceptible to external pressures because they are increasingly financially
dependent upon the pharmaceutical industry.The clinical issue - autism, bowel
disease, and possible links with MMR - is a relatively simply story that has
become obscured by layers of personal, political, financial and other
imperatives that threaten to subvert the issue of how to help these children.
This must be resisted if we are to separate fact from wishful thinking.From the
outset, parents have, in good faith, reported their children's symptoms linking
bowel symptoms to developmental and behavioural regression. Their concerns have
been almost universally dismissed by health care professionals. Some had to
wait many years before getting their child investigated.As doctors we must
first listen and then act upon what we have heard. This is one of the tenets of
conventional clinical medicine. I was fortunate enough to work with
paediatricians who share this belief and are also world leaders in the field of
childhood intestinal diseases.Early in our investigations it became clear that
the parents were right. They have helped us to identify what appears to be a
new bowel disease in a group of children with autism.Since our first report
came out in 1998, we have investigated more than 200 children with autism, the
majority of whom have a strikingly consistent pattern of intestinal
inflammation. There is also growing support from other doctors. People are coming
off the fence and acknowledging that genuine questions need to be answered.
Unfortunately, the Government's determination to exonerate the MMR vaccine has
led to research data being used inappropriately. Conflicts of interest abound,
scientific arguments have been misconstrued, and what remains amounts to little
more than propaganda.Latterly the spotlight has fallen on Leo Blair. I entirely
respect the Blairs' right to privacy. Nonetheless, Tony Blair's response to
media questions, while full of sound and fury, was neither convincing nor very
helpful. To the more cynical it was reminiscent of the ambiguity of other
Presidential denials, such as when Bill Clinton made the infamous remark: 'I
did not have sexual relations with that woman'.I believe that the Government's
response has been inadequate, at times inappropriate, and will ultimately be
deemed irresponsible.This is, in my opinion, made inevitable by a structure
where politicians, in the face of a controversial medical issue, are dependent
on their mandarins at the Department of Health. The latter represent a
polarised and rarefied view point, making politicians extremely vulnerable. The
Government and its representatives in the Department of Health rely upon
epidemiological studies that, among many flaws, have tested hypotheses that
have little or no bearing upon the children we have investigated.Meanwhile, the
tragedy for these children continues.Denied appropriate health care already,
they continue to be ignored because acknowledgement of their plight could raise
the spectre of an association between their disease and the vaccine.Until we
have sufficient evidence, parents should be in a position to choose how they
protect their children from these diseases.The parents' dilemma is shared by my
wife Carmel and me. Two of my four children, now four and seven, have not
received the MMR vaccine and have yet to receive the single vaccines.When we
were trying to work out what to do for the best, the data were only just coming
to light. Now, they are beyond the age where measles is really an issue. It is
children under two years of age who are at greatest risk if they get measles,
and for this reason I would strongly recommend protection with the single
vaccine at the recommended age of 15 months.At times, the criticism over my
work has been fierce.My wife has been very supportive. It would have been
impossible to continue if she hadn't. We are of a like mind. She reminds me
that we have four healthy children and that one can't walk away from the issue
saying: 'This is uncomfortable for me so I'm off to a career in liposuction and
removing ingrowing toenails.' The debate should not be polarised into pro or
anti-vaccine. The issue is one of how best to protect children. Clearly, if
children were to die because there was a measles epidemic and there was no
available effective alternative to the MMR jab, that would be enormously
regrettable.For this to happen when an effective alternative has been denied
would be completely unacceptable.There should be no reason to raise fears about
complications of measles epidemics and measles deaths because the alternative -
the single measles vaccine - is there. I regret the message has been distorted
and that we have been unable to establish the kind of dialogue that we sought with
the Department of Health.I have no personal regrets; rather it has been a
privilege to be involved. Any gratification is however tempered by a knowledge
that precious time has been lost for these children to territorial and
political imperative.In the end, for doctors, it may stand as a lesson in
humility, reinforcing the roots of clinical medicine. And also humility in
deference to the powerful evolutionary forces of parental instinct and
recidivist micro-organisms like measles that will return to haunt you if you
fail to accord them the greatest respect.It is also a lesson that there is no
substitute for listening.
© Dr
Andrew Wakefield
http://www.jabs.org.uk/
******************************
Iowa Human Services Council Meeting,
Testimony Of
L.D. Wedewer , Iowa & United States Autism Ambassador
January 9, 2002
My name is LD Wedewer; I am the Iowa & United States Autism Ambassador I
reside in the city of Cedar Rapids, Iowa. I would like to take this time to
thank the Human Services Council and distinguished guests and speakers for
allowing me to speak today.
I rise today to be a voice for the voiceless and to pay tribute to parents,
individuals, families, and children with autism and disabilities in Iowa, and
to ask all here tonight for your help. I am here to request a veto to many of
the medical optional service cuts and to show my support for Medical Optional
services
My daughter has early infantile autism this is the rarest form of autism only
10% of all children with autism fit into this rare category. I know first
hand the
Challenges these families face. Many days, as parents my family and I cannot
hold conversations with our daughter, as you might engage in communication
within your family. Some days communicating with her takes extraordinary
patience on everyone's part, Had we not engaged her in an intensive
intervention program in our home immediately after her diagnosis, She would
have made much less progress today.
Autism and many other disabilities require ongoing therapies to improve their
quality of life. My daughter also requires specialized medicines, vitamins, and
minerals that her body mal absorbs, as well as a special diet for her health
and safety for severe food allergies. Without these medical options she would
cease to thrive once again.
The Prevalence of Developmental Disabilities in Iowa is an estimated 52,673
Iowans with developmental disabilities (based on Gollay's incidence figure;
1.8% of the total population. As a result of autism, an estimated
400,000-500,00 Americans have lost the ability to communicate and interact with
others.
Autism Society of Wisconsin reports In 2001 that it was determined that 1 out
of 53 babies born in the United States would later be diagnosed with One of the
Autism Spectrum Disorders by the age of three (2004). In Iowa we have over
3000-4,000 individuals with a diagnosis of autism spectrum disorder.
Dr. Marie Bristol-Powers from the National Institute of Child Health and Human
Development stated that autism spectrum disorder is not rare. In fact, it is a
pressing health problem
The recently released Center for Disease Control and Prevention report found
that autism spectrum disorder occurred in one in every 150 children in 2001.
According to the National Center for Education Statistics, enrollment will be
55.9 million by 2005, at least 800,000 educational personnel are needed to
serve these students and 1,000,000 doctors will be needed to treat these patients.
Today Autism Spectrum disorders is even more common then Downs syndrome,
Diabetes, Muscular Dystrophy, Cystic Fibrosis, and many forms of childhood
cancer.
Caring for people with autism costs more than $13 billion per year, and the
majority of these costs are borne by the families of the individuals with
autism. These parents have sacrificed tremendously to provide the specialized
medical, diagnostic, educational and support services that their children need.
Yet, they still do not receive the support they need or resources they deserve
under their medical condition of autism.
What good are doctor recommend diagnostic, treatments and therapy options, if
there are no resources to for the family to pay for them? Would the individual
become institutionalized or ever gain the ability to live independently because
of the lack of our state and governmental Funding? What would this additional
cost be? I believe we would be saving more money over the long period of time
by helping them gain the ability to sustain life independently. Would it be
more if we were to pay for it with total responsibility for the individual for
the rest of their life in an institution? I believe we would be saving money to
get these individuals into interventions and give them resources then if we
were to pull the plug on their much-needed services.
If we cut the Psychology services, Physical therapy, speech therapy,
occupational therapy, Wavier Services under the MR Waiver or the ill and
handicapped waiver, Prescribed Drugs, Day treatment and case management to the
CMI, MR, and DD eligible individuals, durable Medical equipment, Dental
Services, or Optometric services we will force individuals with autism and
other disabilities into poverty. These are already financially burdened
families.
Even losing the Chiropractic Services I can view as a mistake. I know many
individuals live that with autism that had they not found a sympathetic
chiropractor would not have lead them to a doctor with a great knowledge of
autism. In the end result the child is now gaining in life and social skills
and is beginning to be a thriving productive member of the community. The
constitution of the United States says we all have the right to our potential.
What potential will these individuals make if we do not give them the vital
Early Intervention they need to sustain them. Then you can begin to see on how
it impacts the individuals that are in car accidents, as you see from a medical
point of view this list could be endless.
I can agree with cutting the Podiatrist and even the Hospice Services. My
mother recently died in October 2001. It was her wish to die at home. The
doctor ordered hospice to come in my parent's home and help with my mother's
care. They explained that they would be there no more then 3-4 hours a
day. The final days of my mother's life were in our loving care. Hospice was
only there for around one hour a day. I stayed with my mother day and night for
those final days. I am proud to say that she had her last wish, as comfortable as
she could be. My mom died in my arms, with all of us around her. Hospice was a
big disappointment, I can agree to these two cuts.
Many of the services listed above are vital to individuals with autism as well
as other individuals with disabilities. Many individuals without these services
will be unable to thrive or move forward with their abilities. One of the first
things many parents of newly diagnosis children are informed by professionals
is to downsize the living environment to save money. Some are forced out of
their homes by expenses of medical care not yet covered. This means they have
to sell their homes that they have struggled to buy and keep, these places they
call home.
We as a state should also consider the children awaiting adoption with
disabilities in Iowa. Many newly adoptive parents of disabled children rely on
medical coverage to bare some of the cost of treatment, diagnostic, therapy,
and prescriptions to help their newly joined family. Not all families
that adopt have the resources to fund these medical expenses out of their own
pocket. I must wonder if as many of the Iowa Children with disabilities will be
adopted without proper funding for their health conditions.
The vision for change embodied in President George Bush's New Freedom
Initiative and Executive Order is a broad one. Individuals with disabilities
will have access to health care that recognizes and provides supports and
services that promote independence and productivity. Individuals with
disabilities will have a place to live in their community among family and
friends. Individuals with disabilities will have jobs, accessible
transportation, and enhanced, accessible technology. Individuals with
disabilities will benefit from education along with peers without disabilities.
The priorities and actions outlined in this report will move our Nation in the
direction of this vision. They also will strengthen and sustain families and
expand opportunities for individuals to participate in the full range of
community life. If this was the vision, how can we obtain these goals or vision
with these proposed medical cuts?
Since autism spectrum disorders is a medical condition, medical companies
should be required to have a standard to pay for all testing, treatments, and
therapy options including private companies. The Federal Mental Parity Laws
have been argued (disputed) by many due to the many loopholes large enough to
drive a truck through. Only 30 states have passed their own versions of this
law, only some of them are even crafted more tightly then the federal law. Iowa
unfortunately is not one of the 30 listed.
All states should be required to provide coverage for an individual with an
autism spectrum disorder no less extensive than coverage for a physical
illness. This should apply to all groups, HMO's, and any other governmental
insurance regardless of size. This coverage should cover all treatment,
medicines, vitamins, therapies, diagnostics, tests, and evaluations. Many
families seek out state and governmental funding because the insurance they had
or already have will not cover the individual with autism. Many other
insurances either refuse to cover the individual or set the price of insurance
to the degree that it is untouchable to a great amount of families. Most of these
costs are currently borne by the families who already have stressed incomes.
Another situation is many states including Iowa do not offer many types of
specialized testing or laboratories such as the Great Plains Laboratory.
Insurance coverage does not cover diet, vitamins or minerals. Even though these
can be used as a medical deduction on your taxes, the family must wait the
whole year to receive their money back, and some are not even covered then. To
find out how your state rates on the Mental Health Parity Law it is located
online at: www.drkoop.com/her/insurance/library/health/basics/mentalstate.asp
I as well as anyone here today understand the need for spending budget cuts.
This is why we have brought many free programs to Iowa for families with
individuals with autism spectrum disorders. This is our effort to help save
educational, medical and family budget dollars and will continue to do so in
the years to come. However I must ask, "At what cost will we be seeking
budget cuts in 2002? Our Disabled individuals medical services are already in
tremendous need and poorly funded. Will it be their education, the People of
the United States were promised funding to contribute up to 40 percent of the
average per pupil expenditure for special needs funding. As promised in the
original resolution of the H.R. 1330, the Helping Children Succeed by Fully
Funding the Individuals with Disabilities Education Act. To date, the maximum
the government has ever contributed is 15- 18 percent.
Over the years there have been a number of 'declarations', 'charters' and
'bills of rights' drawn up on behalf of people with disabilities. Although
their intentions are clear and the spirit and sentiments are to be applauded,
none of them have addressed all of the particular range of problems presented
by autism, nor given the proper medical coverage necessary to cover expenses
borne by the families. Only 30 states have Mental Health Parity Laws, and Iowa
is unfortunately not one of them.
Iowa Governor's DD Council website states, the responsibility for providing and
funding services to children who are diagnosed with mental illness or
behavioral disorders though is much less clearly defined. Individual counties
may fund some services to children if identified in the county management plan,
while other services may be available from community mental health centers or
the state. The system is fragmented, resources are limited and ultimately many
of the costs of serving these children are born by the family.
Other Unserved and Underserved Groups
o People with developmental disabilities without mental retardation
o Persons with brain injury
Iowa counties provide funding and administration of services to resident with
disabilities. Services and eligible populations are base on categories of
disability and identified in the county management plan. Counties must serve
adults with mental retardation and those with mental illness who receive
services in a state mental health institute but have no mandate to provide
services to individuals with a developmental disability other than mental
retardation or to persons with brain injury
Most state and national standards of insurance for individuals with autism
spectrum disorders are already inadequate. Since autism spectrum disorders is a
medical condition, medical companies should be required to have a standard to
pay for all testing, treatments, and therapy options including private
companies, yet most do not. I believe once again that all states should be
required to provide coverage for an individual with an autism spectrum disorder
or any disability no less extensive than coverage for a physical illness. This
should apply to all groups, HMO's, private insurance companies, and any other
governmental insurance regardless of size. This coverage should cover all
treatment, medicines, vitamins, therapy, diagnostic, testing, evaluations, and
parent training to learn how to care for the individual with a lifelong
disability, in or out of state.
I believe one solution would be for Iowa to pass a Medical and Mental Health
Parity law to ensure these families receive what they need. I realize that this
will not cure your budget situation but I believe this is one way we can still
make a difference without compromising individual lives. This will help to
eliminate many families currently receiving state and governmental funding. I
believe this will save many budget dollars for Iowa. The insurance would be
required to pay the cost not the state of Iowa or the government.
I implore you to search and seek other solutions to resolve these proposed
Medicaid Optional Services budget cuts; there must be a way to cut expenditures
without compromising the health or education of individuals in Iowa. I urge you
to veto the current proposed cuts in light of this testimony and the testimony
of others here today.
LD Wedewer, Iowa and United States Autism Ambassador
1900 K Street SW, Cedar Rapids, IA 52404
(319) 364-2687
E-mail: AutismAwakening@aol.com
President/ Founder,
Autism Awakening,
Iowa & World wide Autism Registry,
Iowa & Worldwide Autism Council,
Autism Fly Free Program (For medical)
Autism First Steps Autism Action Plan, Autism First Steps Support Meetings,
Autism First Steps Free Online Daily Newsletter/ Newspaper, Autism First steps
Autism CD's for PC's Autism Guide Geared for each profession, and more
References:
Texas State Senate and Legislators: By Lucio S.B. No. 427
77R3810 AJA-D
In 2001 legislative session I requesting State Resolution to INDIVIDUAL OR
GROUP HEALTH BENEFIT PLAN COVERAGE FOR AUTISM AND PERVASIVE DEVELOPMENTAL
DISORDERS as set by the example of the Texas State Senate and Legislators: By
Lucio S.B. No. 427 77R3810 AJA-D
Relating to health benefit plan coverage for the treatment of
Autism and pervasive developmental disorders.
BE IT ENACTED BY THE LEGISLATURE OF THE STATE OF TEXAS:
SECTION 1. Subchapter E, Chapter 21, Insurance Code, is Amended by adding
Article 21.53X to read as follows:
Art. 21.53X. INDIVIDUAL OR GROUP HEALTH BENEFIT PLAN COVERAGE FOR AUTISM
AND PERVASIVE DEVELOPMENTAL DISORDERS
Sec. 1. DEFINITION. In this article, "enrollee" means a
person entitled to coverage under a health benefit plan.
Sec. 2. APPLICABILITY OF ARTICLE. (a) This article
applies only to a health benefit plan that provides benefits for medical or
surgical expenses incurred as a result of a health condition, accident, or
sickness, including an individual, group, blanket, or franchise insurance
policy or insurance agreement, a group hospital service contract, or an
individual or group evidence of coverage or similar coverage document
Iowa Governor DD Council Website:
A. Prevalence of Developmental Disabilities
There are an estimated 52,673 Iowans with developmental disabilities (based on
Gollay's incidence figure; 1.8% of the total population
G. Other Unserved and Underserved Groups
o People with developmental disabilities without mental retardation
o Persons with brain injury
Iowa counties provide funding and administration of services to resident with
disabilities. Services and eligible populations are base on categories of
disability and identified in the county management plan. Counties must serve
adults with mental retardation and those with mental illness who receive
services in a state mental health institute but have no mandate to provide
services to individuals with a developmental disability other than mental
retardation or to persons with brain injury. reference Link:
http://www.state.ia.us/ddcouncil/state_plan.html
******************************
Human Services Council Meeting
Testimony Of
Joyce Minor, IA & U.S. Autism Co-Ambassador
January 9, 2002
My name is Joyce Minor of Urbana, Iowa in Benton county. I have 2 sons,
each have autism. Wesley, whom is 8 years old, has profound autism.
Ryan, whom is 10 years old, has autism to a lesser degree than Wesley.
I am here today to tell you all how the services that are being
considered for termination are crucial to my son Wesley's developmental needs.
My son Wesley is on Medicaid and has a MR waiver. Medicaid supplements
the very high medical and budget that my husband and I spend on Wesley.
Wesley requires several drugs daily. Medicaid pays for the copays
on these drugs and normal specialized doctor visits a few testing.
Wesley is also being treated for food allergies and metabolic disorders
associated with autism, which are not covered by Medicaid. The doctors'
visits, lab fees, special procedures, special foods, supplements, and vitamins
associated with treating these disorders, are not covered by Medicaid.
Without the Medicaid paying for Wesley's normal medical fees, my husband
and I would not be financially able to pay for these treatments that my son so
desperately needs. These treatments are making very positive improvements
in my son's condition. Most of the costs for my child's specialized
treatment, therapy and diagnostic testing is already borne by our family.
It should be covered by the insurance coverage, because it is a medical
condition , yet we still wait for this type of coverage. If you
take away anymore services we will be unable to pay for his much needed
services.
The MR waiver provides aid for Wesley (and our family) in the form of SCL and
respite. These services provided mainly by Lutheran Home Services of
Vinton, supplement Wesley's special education at Center Point-Urbana Elementary
school to give him support he needs to realize his potential. Without
these services, he is certain to not reach his full potential.
As a Co Autism Ambassador for the state of Iowa and the United States I must
stress concern over the loss other individuals with Autism Spectrum
Disorders as well as the general disabled, community what will their loss be?
I know first hand what these parents and individuals endure. With
the loss of these services, how many of them will also be forced into poverty.
I realize the need for budget cuts, but I think we are making a mistake
if we cut disabled or educational vital programs and services. These are
things many individuals depend on to thrive and succeed.
Our main goal and objective is that Wesley will realize a great amount of his
potential and never have to go to a special dependent care home. He has
made great strides so far with the treatment and special services he his
receiving, but if the special services and Medicaid are terminated, his
progress will be greatly impacted, and regression is likely. We need the
Medicaid and MR Waiver support to keep the progress going. If we don't,
Wesley will be more of a burden in the future, when he gets older. Our
family does not want to see that, and I know that the taxpayers don't want to
see that either. Please don't take this support away from Wesley, it
would be a great mistake. Thank you for allowing me to testify today.
Sincerely,
Joyce E. Minor, Iowa and US Autism CO-Ambassador
105 Richland Avenue
Urbana, IA 52345
(319) 443-2934
E-mail: AutismAwakeMinor@aol.com
Vice-PresidentOf:
Autism Awakening,
Iowa & U.S. Autism Co-Ambassador,
Iowa & World wide Autism Registry,
Worldwide Autism Council,
Autism First Steps Autism Action Plan,
Autism First Steps Daily Newsletter,
Autism First Steps Support Group Meetings
& more.
******************************
Learning Disability Linked With Increased Risk
of Affective Disorder
NEW YORK (Reuters Health) Jan 08 - Individuals with mild learning disabilities
have a long-term risk of affective disorder, according to a report in the
December issue of the British Journal of Psychiatry. In a large, population-based,
prospective study, Dr. Marcus Richards, of University College London, UK, and
colleagues examined the risk of affective disorder in subjects with mild
learning disability and also evaluated the potential role of adverse social or
material circumstances in childhood and adulthood. Participants were drawn from
members of the British 1946 birth cohort. The final sample consisted of 41
individuals with mild learning disability (defined as the equivalent of an IQ
of 69 or less at age 15 years) and 2119 controls. "The Present State
Examination at age 36 years and the Psychiatric Symptom Frequency Scale at age
13 years provided psychiatric outcome measures," the team explains. They
found that people with learning disabilities were significantly more likely to
be rated by a teacher as having a behavioral problem than those in the
comparison group (p < 0.001). These individuals also had a fourfold
increased risk of affective disorder in mid-life. The risk of affective
disorder was "not accounted for by social and material disadvantage or by
medical disorder," Dr. Richards and colleagues report. Based on these
findings, they conclude that the "continued assessment of affective state
in individuals with learning disability as they progress through mid-life into
old age is therefore of considerable importance." Br J Psychiatry
2001;179:523-527
http://www.medscape.com/reuters/prof/2002/01/01.09/20020108epid004.html
******************************
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