NY Governor Vetoes Autism Insurance Legislation

Legislation had passed unanimously in the NYS Assembly and NYS Senate



I am returning herewith, without my approval, the following bill:

Senate Bill Number 7000-B, entitled:

“AN ACT to amend the insurance law and the public health law, in
relation to coverage for the screening, diagnosis and treatment of
autism spectrum disorder”


My time as the 55th Governor of New York State has been shaped by
extraordinary fiscal and revenue crises. It has been a continual chal-
lenge to work for the betterment of the State’s residents without unnec-
essarily creating a gap between revenues and expenditures. A number of
bills sent to my desk were clearly borne of compassion and good
intentions, and would have been approved were it not for the unbudgeted
costs associated with such legislation. One such example was a bill to
cap the rent of individuals with HIV or AIDS who receive shelter assist-
ance or an emergency shelter allowance, which I recently and reluctantly
vetoed (Veto No. 6818 of 2010). I am required to ask: What is it that I
am saying that the Legislature is not hearing? Worthy matters deserve
funding, but without making specific funding available, the Legislature
gives me only heartache and the most unpleasant alternative.

Autism Spectrum Disorder (ASD) encompasses conditions that range along
a spectrum, including Asperger’s Syndrome, Pervasive Developmental
Disorder and Autistic Disorder. It is characterized by impaired social
interaction, impaired communication and restricted or repetitive
patterns of behavior. Although estimates of prevalence vary, it appears
that ASD occurs in approximately one in every 110 children, is four
times more likely to occur in boys than girls, and occurs in all racial,
ethnic and social groups. The cause of autism is unknown and there is no
cure, but early detection of ASD, when followed by the right inter-
ventions, can lead to better outcomes in functioning. Caring for a child
or adult with ASD can require extraordinary emotional efforts, and
impose significant financial burdens.

New York State offers services and supports to individuals with ASD,
and to those with other developmental disabilities, through a variety of
State programs, including the Early Intervention Program, special educa-
tion services for children of preschool and school age, and other
services and supports through the Office for Persons with Developmental
Disabilities (OPWDD). Significant State resources, along with federal
dollars, support these programs each year. Nevertheless, countless fami-
lies have told me of their struggles to access the services that will
help their loved ones with ASD attain their full potential.

This bill would require State-regulated health insurers to provide
coverage for treatment and therapy options for ASD, in accordance with
regulations promulgated by the Department of Health, in consultation
with the State Insurance Department, OPWDD and the Office of Mental
Health. The treatment and therapy options for which coverage would be
mandated must be “evidence-based, peer-reviewed and clinically proven.”
The regulations would have to be promulgated within 12 months of the

bill’s enactment and would have to be updated on a regular basis, and
the coverage mandate would take effect once the regulations are promul-
gated and apply to policies issued or renewed after that date.

The agencies would require additional resources in order to carry out
this function over the course of the next year, demands which were not
accommodated in the 2010-11 budget. Moreover, health insurance premiums
would rise as a result of this bill, beginning January 2012. While it is
difficult to estimate the amount of the increase for a number of
reasons, including the variance of needs among individuals along the
autism spectrum and the fact that a person’s needs my change over the
course of his or her lifetime, it appears clear that both the State and
local governments, which pay varying proportions of the health insurance
premiums for their employees and retirees, would face significant costs
as a result of the bill. In addition, the State pays the premiums for
Child Health Plus, which also would increase. I believe these increased
costs collectively to the State and localities would be a least $70
million annually. I cannot impose such an unfunded mandate on the next
Governor and local governments throughout the State.

Premiums for commercial insurance also would rise if the bill were
enacted, the effect of which likely could be that some New Yorkers might
lose their insurance coverage, at least until the federal Patient
Protection and Affordable Care Act is fully implemented. Making sure
that all New Yorkers have access to affordable health insurance is one
of the objectives of my administration, and we must carefully consider
the impact of extending coverage to additional persons if it results in
the loss of coverage to others.

It is clear that providing effective treatments, including certain
intensive therapeutic treatments, to individuals with ASD has the poten-
tial to improve their functioning significantly, meaning that they would
require fewer services, or less intensive services, in the future. In
addition, the bill could shift the cost of some services that are now
funded by Medicaid or other State programs to private insurance. Howev-
er, it is almost impossible to quantify such savings, and they would not
occur in the years the initial associated costs would be incurred.

I am extremely sympathetic to the very real struggles faced by the
families of individuals with ASD. ASD is a disabling disorder that is a
priority for society to address. It will be a subject of my continued
advocacy as a private citizen. But now I am Governor, and I cannot sign
a bill that would impose costs that the Legislature does not fund. I
implore the Legislature to make the necessary decisions to cause this
bill to be funded adequately. If it does so and sends it to me in my
remaining days as Governor, I will sign it immediately. But, I cannot
agree to enact a bill that would present significant costs to the State
and local governments that have not been accounted for in the State
Financial Plan and that should not be approved outside of the budget.

The bill is disapproved. (signed) DAVID A. PATERSON

Parents Needed to Participate in Autism Research Online Survey

Led by Dr. Peter Bearman, researchers at Columbia University’s Institute for Social and Economic Research and Policy are currently collecting life stories from parents about their experiences in recognizing their child’s autism, and their journey seeking professional help and navigating the available service systems.

Dr. Bearman is the recipient of the prestigious NIH Director’s Pioneer Award, a $2.5 million award that will support his study of the social determinants of autism. The goal of this project is to gain a better understanding of the road to diagnosis.  Parents have different experiences and observations of their child’s development and they have different personal resources with which they access care and services. Parents also differ in the type and extent of their support networks and social relations.  Parents often make different decisions in their quest for obtaining the right diagnosis and care for their child.  Columbia would like to give parents the chance to tell their stories through an online survey. Participation in the survey may help researchers understand the heterogeneity of autism as well as how children develop over time.

If you are the parent of a child with autism, you can participate in the online semi-structured survey at Columbia University’s website, http://www.understandingautism.columbia.edu

“The autism epidemic is a huge and complex puzzle which impacts hundreds of thousands of children and families,” said Bearman. “It is one of the most pressing population health problems of our time. The Pioneer award makes it possible for us to think new thoughts and take big chances in our understanding of the epidemic and hopefully to make major contributions to public health.”

Numerous studies have investigated hundreds of factors believed to be associated with both the incidence and increased prevalence of autism. However, a significant dilemma facing researchers is that no single factor correlates very highly with the developmental disorder.

Peter Bearman’s research aims to provide new insight into the increased prevalence of autism by comprehensively and simultaneously examining the major factors potentially driving this epidemic. Bearman’s study seeks to identify to what extent each of the three competing theories-expanded criteria for diagnosing autism, environmental degradation, and genetic inheritance-is able to account for the rise in autism cases.

In the first stage of his project, Bearman will build new data sets that enable him to understand potential gene-environment interactions, and assess the impact of changes in diagnostic criteria, family dynamics, and other factors in accounting for the autism epidemic. The second phase of his research will focus on understanding the social networks of doctors, hospitals, schools, and interacting parents in neighborhoods and associations whose activities construct the epidemic as we observe it. The third stage of the project will extend the framework developed for analyzing autism to other non-contagious epidemics, ADD, ADHD and bi-polar disorder which, though biologically unrelated to autism, may share some underlying social dynamics.

NIMH Director Dr. Tom Insel recently interviewed Dr. Bearman about his work. Video and transcript of this interview are available at http://www.nimh.nih.gov/media/video/bearman.shtml

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