Funding Autism Research
A hearing was held on progress made since the subcommittee’s April 17, 2007, hearing on autism in the United States.
Dr. Insel talked about autism research initiatives the the National Institutes of Health and various statistical analyses associated with research.
He was followed by a panel of parents who testified about their experiences with autistic children and treatments for the disease
Prepared Statement of Mark van Voorst, CEO/President of Lifespire
Good morning/good afternoon. My name is Mark van Voorst. I am not a
physician, scientist, geneticist, statistician, nor even a practicing
clinician so my comments will not address the issue of the rise in the
numbers of individuals diagnosed with autism, nor will I attempt to
offer any insights regarding the cause of this phenomenon.
However, for the past 29 years I have worked as an administrator in
organizations that provide an array of services to individuals
diagnosed with Mental Retardation or other forms of Developmental
Disability. I am presently the CEO of a large not-for-profit
organization in New York City which provides services to roughly 5,000
individuals per day and my comments are intended to enlighten the
Committees on the enormous challenges that every New York State
voluntary agency will face in the coming years as we struggle to ensure
that all children and adults who are diagnosed with an Autism Spectrum
Disorder receive the supports and services they will need.
In February 2007, the Center for Disease Control and Prevention
released a new finding that concluded that the rate of autism in the
United States is now 1 per 150 births. The National Census for 2004
shows that there were 4,115,590 births in 2004. Using CDCs figures,
this means that of all of the children born in 2004, roughly 27,437
will be diagnosed with some level of autism. Current national estimates
suggest that there are already between 560,000 and 800,000 individuals
who are diagnosed with some level of autism.
In 2003 the New York State Office of Mental Retardation and
Developmental Disabilities estimated that there were 52,991 individuals
In 2004 the National Census figures for New York indicated that
there were 250,894 births. Using the newly released CDC figures, this
means that roughly 1,673 of all new births in 2004 will at some point
be diagnosed with autism. Current literature suggests that roughly 50
percent (45 percent–60 percent) of these 1,673 individuals will also
be diagnosed with an IQ of 70 or less, which means that in addition to
being autistic, they will carry a diagnosis of Mental Retardation. It
is safe to say that of the 1,673 children born in 2004 who will be
diagnosed with autism, approximately 837 will require some level of
support and assistance throughout their entire lives.
As I am not an educator, I do not know the cost of providing
supports and services to these individuals from birth to 21. However, I
can give you some idea of what it will cost to provide support and
services to these individuals once they become adults. The figures I am
presenting are based on real, current annual costs for providing day
and residential services at Lifespire Inc.
Individual with a high level of need
Combined Annual Costs–$198,983
Individual with a lower level of need
Combined Annual Costs–$136,175
If we now project these figures over the lifetime of an individual
who needs ongoing supports and services (between the ages of 23 and 66
= 43 years) and build in an annual increase of costs of 3 percent the
total costs rise dramatically.
Individual with a high level of need between 23-66
Cost over 43 Years–$17,724,368
Individual with a lower level of need between 23-66
Cost over 43 Years–$12,132,730
Looking only at the 837 children born in 2004 who may well need
lifelong supports and services, it will cost between $10,155,095,010
(low side) and $14,835,296,016 (high side) to provide services once
they leave the school system.
In 2003 the Office of Mental Retardation and Developmental
Disabilities estimates that there are 52,911 individuals with autism
currently in New York. Until we have an actual breakdown of the ages of
these individuals we have no way of knowing how many are currently
being served and how many are about to enter the adult service world.
However, I think it is fair to say that the need for increased funding
will be staggering.
CRISIS NUMBER TWO: WHO WILL PROVIDE THE SUPPORTS AND SERVICES?
In January 2006 the U.S. Department of Health and Human Services
released a report entitled “The Supply of Direct Support
Professionals” (DSP). HSS estimated that, in 2003, approximately
874,000 individuals worked full time providing care for roughly 4.3
million Americans of all ages. Most importantly the report noted “DSPs
are essential to the quality of life, health and safety of more than
one million Americans who are in need of long term services and
By 2020 the demand for DSPs will grow to 1.2 million. This
represents an increase of 37 percent. However, during this same time
period the available pool of labor will increase by only 7 percent.
HHS also estimates that on a national level there is a 10-11
percent vacancy rate in all Direct Support Professional positions. The
situation is so severe that many existing service providers are
refusing to expand services to meet the growing demand because they
cannot recruit and retain the work force necessary to do so.
Additionally, the turnover rate of DSPs is estimated to be 50 percent
While perhaps not as severe as the “national problem”, Lifespire
Inc. is experiencing both crises identified in the 2006 HHS report. At
any given time we have between 80-100 positions that are not filled and
our turnover rate for those individuals providing direct support to our
consumers in 2006 was 39 percent. While I have not seen any figures for
all of New York State, I suspect that my experience at Lifespire is
shared by most, if not all not-for-profit organizations in the State.
The legislature and OMRDD have done a wonderful job providing
resources that enable organizations like Lifespire to serve New Yorkers
with developmental disabilities. Unfortunately, the funds allocated by
the legislature are still not enough to allow us to attract and retain
a skilled work force. Unless we are in a position to both attract new
staff while at the same time are given the dollars to retain our
existing staff, the wave of individuals diagnosed with autism which
will begin to spill over into the supports and services within the
“adult world” will simply overwhelm the provider system and will have
disastrous consequences for an entire generation of children and their
During one of his campaign speeches, Governor Spitzer stated that
it was important that we “take care of those who cannot take care of
themselves”, and that “everyone who has special needs will get the
care they need for as long as they need it”.
Mr. Chairman, I believe that we have a moral obligation to ensure
that all New Yorkers who have been or will be diagnosed with autism
have access to a service system that is both sufficient in size and
sufficiently well trained to provide the services and supports that
they will need. While I certainly hope that there is funding for
ongoing research to determine a cause for autism, I also implore the
Committees to take this message back to the full Senate and Assembly so
that increased dollars flow to the voluntary provider community or to
parents so that they can directly purchase the services they feel their
children need. If we do not do something soon the provider community
will simply not be equipped to deal with the numbers of individuals
diagnosed with autism who will need adult services.
Autistic people have fought the inclusion of ABA in therapy for us since before Autism Speaks, and other non-Autistic-led autism organizations, started lobbying legislation to get it covered by insurances and Medicaid.
ABA is a myth originally sold to parents that it would keep their Autistic child out of an institution. Today, parents are told that with early intervention therapy their child will either be less Autistic or no longer Autistic by elementary school, and can be mainstreamed in typical education classes. ABA is very expensive to pay out of pocket. Essentially, Autism Speaks has justified the big price tag up front will offset the overall burden on resources for an Autistic’s lifetime. The recommendation for this therapy is 40 hours a week for children and toddlers.
The original study that showed the success rate of ABA to be at 50% has never been replicated. In fact, the study of ABA by United States Department of Defense was denounced as a failure. Not just once, but multiple times. Simply stated: ABA doesn’t work. In study after repeated study: ABA (conversion therapy) doesn’t work.
What more recent studies do show: Autistics who experienced ABA therapy are at high risk to develop PTSD and other lifelong trauma-related conditions. Historically, the autism organizations promoting ABA as a cure or solution have silenced Autistic advocates’ opposition. ABA is also known as gay conversion therapy.
The ‘cure’ for Autistics not born yet is the prevention of birth.
The ‘cure’ is a choice to terminate a pregnancy based on ‘autism risk.’ The cure is abortion. This is the same ‘cure’ society has for Down Syndrome.
This is eugenics 2021. Instead of killing Autistics and disabled children in gas chambers or ‘mercy killings’ like in Aktion T4, it’ll happen at the doctor’s office, quietly, one Autistic baby at a time. Different approaches yes, but still eugenics and the extinction of an entire minority group of people.
Fact: You can’t cure Autistics from being Autistic.
Fact: You can’t recover an Autistic from being Autistic.
Fact: You can groom an Autistic to mask and hide their traits. Somewhat. … however, this comes at the expense of the Autistic child, promotes Autistic Burnout (this should not be confused with typical burnout, Autistic Burnout can kill Autistics), and places the Autistic child at high risk for PTSD and other lifelong trauma-related conditions.
[Note: Autism is NOT a disease, but a neurodevelopmental difference and disability.]
Fact: Vaccines Do Not Cause Autism.