Breaking News: The Combatting Autism Act Reauthorization Bill from Senator Dodd's Office (D-CT) will be introduced this afternoon, and it will include some changes from draft we saw on Tuesday. Over 70 autism organizations representing thousands of autism families across the nation have endorsed the guiding principles set forth by CAARC. The draft we have seen falls short. Details below. You can read the guiding principles HERE at CAACoalition.org.
Statement from the Working Group of the Combating Autism Act Reauthorization Coalition on Senator Dodd’s Working Draft of a Combating Autism Act Reauthorization Bill; Dodd’s Draft Falls Short on Guiding Principles that 70 Autism Organizations Have Endorsed
On Tuesday December 14, 2010, Senator Christopher Dodd (D, CT) shared a working draft of the Combating Autism Act of 2011 (CAA 2011) that he plans to introduce later in the week. Submitted in the waning hours of the 2010 session and unsupported so far by a Republican co-sponsor, Dodd’s introduction of an actual bill was largely a symbolic gesture. Discussions over CAA 2011 will resume in the New Year. As with the original Combating Autism Act of 2006 (CAA 2006), bipartisan cooperation will be essential to an effort that truly commits our medical and scientific institutions to combating the autism epidemic, the most significant childhood public health crisis of the 21st century. The latest information available from the Centers for Disease Control and Prevention (CDC) estimates that 1 in 110 American children born in 1998 were stricken with autism.
The Combating Autism Act Reauthorization Coalition (CAARC) wrote letters to Senator Dodd on November 19th and December 3rd. In these letters we urged Dodd to delay introduction of any reauthorization bill in order to leave sufficient time to consider the policy challenges our country faces with the autism epidemic in a more deliberate fashion so that we might craft a consensus bill--one based on bipartisanship, broad participation and wide support from the autism community—in an open and transparent process.
CAARC is concerned that Senator Dodd’s draft bill, while introducing some new and positive elements, does not yet provide necessary improvements to CAA 2006 and, more importantly, was drafted neither in a transparent process nor a bipartisan spirit. CAARC looks forward to continuing the discussion of CAA 2011 with both parties in the next congressional session. We all must take the necessary time and care to authorize and implement a bill that will effectively address the critical challenges presented by the American autism epidemic.
Progress in Some Areas
In the draft bill, the most important improvement over CAA 2006 that Senator Dodd proposes is contained in the findings section. There he acknowledges that “with prevalence estimates increasing at an alarming pace, autism is a national health emergency.” According to CAARC’s first guiding principle, “The reauthorized bill should embody the sense of urgency appropriate to the problem. There must be no sugar-coating of the national health emergency we face with autism, no hedging language conceding merely that real increases “cannot be ruled out.” CAA 2011 needs to include a clear acknowledgment of the rising trends by birth year and age group.”
In large part, Dodd’s draft meets CAARC’s standards in declaring autism a national emergency; this declaration is the first and necessary step on the way to a rational and coherent national autism policy.
There are other positive aspects to Senator Dodd’s draft. The draft requests $2.75 billion over five years in federally funded research into autism, a substantial increase over the five year funding authorization proposed in CAA 2006. The bill also authorizes $3.15 billion over six years in autism services funding. CAA 2006 was primarily concerned with research on cause and treatment. Several "services" bills have been introduced during the past few years but have made no progress. The draft CAA 2011 combines, for the first time, research and services. CAARC welcomes these proposed authorizations; clearly, the autism epidemic deserves a vigorous federal response, one which includes both honest investigation of the factors that have provoked the epidemic and critical assistance to affected families and individuals.
CAARC believes that $6 billion of federal autism spending providing for necessary expenditures in prevention, treatment and services could yield extraordinary returns on an admittedly large taxpayer investment. This return will be realized, however, only if the spending is well targeted and the federal officials who govern and manage that spending are held accountable for results.
The Need for an Open and Transparent Legislative Process
Although CAARC represents by far the single largest coalition of individual autism organizations consulted by Senator Dodd’s staff, there were a number of other organizations consulted. Several of these, including Autism Speaks, the national offices of the Autism Society of America and the Autism Self-Advocacy Network, clearly represent families and individuals affected by autism. Even when we disagree with them on the specifics of policy proposals, we welcome them to the discussion.
In addition to these autism groups, Dodd’s staff has consulted with several disability services organizations. To the best of our knowledge, these include Easter Seals, the National Disability Rights Network, and the Association of University Centers on Disabilities. Although CAARC values autism service providers and welcomes the increased funding of autism services, we are concerned when a short list of disability organizations with a diffuse agenda and little background in autism are given such a strong voice in the formulation of autism policy. The most notable shared feature of these groups appears to be that they are large enough to have Washington based lobbyists on staff.
CAARC has made requests to Dodd’s staff on numerous occasions to share a draft copy of the bill so that our legislative working group can review it in detail and share it with the members of the coalition. These requests have so far gone largely unheeded. The first occasion in which members of CAARC were permitted to see the draft language was a two and one-half hour meeting on November 30th in Washington D.C. In that meeting, two CAARC members participated in person and several others participated by phone. Most of the time was devoted to group discussion, leaving little time for document review and analysis. Only those who were present in person were able to review the draft and they were unable to leave with a copy. On December 14th 2010, Dodd’s office distributed a draft copy of the bill for the first time and gave the autism community just a day to respond before moving to introduce the bill in the final days of the lame duck session.
During the November 30th meeting, CAARC became aware that the participation of some of the disability services organizations seemed to be tied to funding earmarks in the draft bill. The language of these earmarks provided detailed specifications for organizations that were to receive funding authorizations ranging from $63 million to $150 million over six years. Although these organizations present on November 30th were not specified in the bill, one of the representatives in attendance referred to a $63 million earmark as “my part of the bill.”
CAARC is in no position to evaluate whether this organization, or for that matter any of the others with active lobbyists that were consulted by Dodd’s staff, deserves to receive funding appropriations of this magnitude. But there is no place in the formulation of critical legislation for insider deals; in a fiscal environment where any spending request is subject to great scrutiny, they put the entire process at risk.
Funding is Only the First Step in Combating Autism
CAARC believes that appropriating more money for autism is a critical first step but not sufficient by itself as a response to the public health emergency represented by the autism epidemic. Increased federal funding for autism must be governed, allocated and managed effectively before we can ever hope to stop the autism epidemic in its tracks and relieve the suffering of hundreds of thousands of affected individuals and their families. Specifically, research spending into causes and treatments for autism must be held accountable and not be held back by the ideological burden of decades of failed investments; similarly, new autism services funding should be channeled to existing services infrastructure at the state level and not be used to prop up new disabilities bureaucracies simply because they have Washington lobbyists.
Ensuring autism research accountability at the National Institutes of Health (NIH). Currently, autism research is directed from the National Institutes for Mental Health (NIMH) and governed by the Interagency Autism Coordinating Committee (IACC). Most autism organizations would agree that autism science is not well placed in NIMH and that the IACC has not performed well. The draft Dodd bill proposes one positive step by proposing a new National Institute for Autism Research (NIAR), taking autism research authority away from NIMH and creating a new research oversight committee. Unfortunately, the draft bill doesn’t go nearly far enough in critical respects: the IACC continues to have authority over autism research; the research funding process remains passive and slow; the oversight responsibility for autism surveillance remains within the CDC; and NIAR officials remain free to withhold funding from politically difficult investigations of environmental factors in autism, including vaccines.
The purpose of CAA should be to stop the autism epidemic in its tracks, not to defend and continue the failed research investments of the last several decades. CAA 2011 needs to fix what’s broken at NIH, not throw more good money after bad.
Resisting autism services bureaucracy. The current state of autism services is familiar to many autism families. Dedicated local service providers and determined families struggle to obtain funding for and deliver services to needy affected individuals (largely children to date) in the face of mounting constraints on local and state resources. The resource gaps are acute and immediate and the urgency of the services demand is increasing as a tsunami of young adults with autism is beginning to age out of the special education services system.
The purpose of CAA 2011 should be to provide direct support quickly to an existing and overburdened services infrastructure and not to replace it slowly with new providers overseen by distant bureaucracies.
CAARC’s Guiding Principles
CAARC has not had a sufficient amount of time in which to examine the draft bill provisions. But based on our brief opportunity to review an earlier version of the draft on November 30th and our initial observations of the recently released document, we have prepared the following summary of how well the draft bill language addresses CAARC’s ten listed Guiding Principles.
Addressed in part
#1- Recognize that our country faces a national public health emergency. The draft bill contains language that is responsive to this principle. The key question is whether the rest of the bill actually implements a solution to the declared emergency.
#2- Direct increased resources for a lifespan of autism services through established services infrastructure at the state and local level. As discussed above, the increase in services funding is substantial. Unfortunately, the services funding has not been endorsed by any Republican co-sponsor (a critical gap in the current fiscal environment) and risks wasting millions of taxpayer dollars on expensive, slow and centralized bureaucracies.
#3- Dedicate federal research funding to strategic research that can halt the autism epidemic in its tracks. The draft bill directs continuing and increased research funding for autism to a focused NIAR. Unfortunately, the draft fails to fix what’s broken at NIH and will likely extend the autism epidemic for many years to come.
#6-Keep individuals with autism safe from accidental death and injury. The draft bill includes a provision to study the issue of safety and wandering for a year. Unfortunately, many autistic children will walk away from home and die while this research is underway.
#4- Conduct autism surveillance with the scope, timeliness and rigor appropriate to the need. The draft bill continues to place autism surveillance under the CDC, which has for nearly two decades failed to meet the most basic standards of care and diligence in autism surveillance.
#5- Focus strategic new research in areas that can yield meaningful near term results. The draft bill is silent on the direction of research spending and fails to provide meaningful mechanisms for research accountability.
#7- Prevent harmful restraint and seclusion of autistic individuals. The draft bill contains no provisions to prevent harmful restrain and seclusion practices in schools. We are grateful that Sen. Dodd has led the effort to pass the House bill in the Senate. Unfortunately this has apparently been stalled by opposition from some "education" and "disability" groups who favor the use of restraints and seclusion.
#8- Address critical gaps in vaccine safety research and policy governance. The draft bill makes no provisions for vaccine safety research, despite rising evidence for a role of vaccine injury in many cases of regressive autism.
#9- End health insurance discrimination against individuals with autism. The draft bill contains no provisions on a critical issue for many autism families who too often cannot obtain critical health services simply because their children carry the autism label with them into the doctor’s office.
#10-Develop autism policy with an open, transparent approach. The draft bill was written in a process, as described above, that has much room for improvement.
Where To Go From Here
As Senator Dodd leaves office, the process of improving CAA 2011 will begin. CAARC wishes to express its thanks and appreciation to Senator Dodd and his staff for their hard work and good intentions on autism policy, and for focusing much needed attention on the needs of those with autism over the last several years. However, we recognize that we have a long way to go before a single dollar from the Combating Autism Act legislation provides benefits to a single autism family rather than being lost in an autism bureaucracy. CAARC urges the next Congress to begin their review of autism with the greater openness and transparency necessary to achieve bipartisan support and community consensus. The best place to start is with a wide ranging series of hearings into all aspects of the autism epidemic. These hearing should include numerous panels addressed to the issues and concerns outlines in our Guiding Principles to assure that the taxpayers money is well spent on truly improving the quality of life for those with autism and stopping the autism epidemic in its tracks.
CAARC looks forward to broadening the discussion and drafting process of effective solutions with all in the autism community, and to developing a Combating Autism Act that changes the course of autism and the treatment of those with this challenging diagnosis."
The Combating Autism Act Reauthorization Coalition (CAARC) is made up of approximately 70 autism organizations in 40 states. CAARC members represent tens of thousands of families and uses the collective voice and power of those organizations to pass legislation that serves the interests of those with autism. You can learn more about CAARC and its Guiding Principles here: http://caacoalition.org/index.php . CAARC invites autism groups large and small across the nation to join us in advocating for those with autism by signing on to our Guiding Principles. Together, we are stronger.