Disability Policy in the Contemporary Congress

 In The Politics of Autism, I discuss the congressional role in the issue.

I have an article at The Forum: "Disability Policy in the Contemporary Congress." Abstract:

The politics of disability policy in the contemporary Congress confirms the observation by James Curry and Frances Lee that lawmaking largely remains a process of bipartisan accommodation. Most major disability legislation since the 1970s has passed with bipartisan sponsorship and support. One reason is that the issue affects so many Americans, including members of Congress. There have been some exceptions to this bipartisan pattern, particularly when disability policy intersects with more contentious issues. And bipartisanship does not guarantee outcomes that are satisfactory to people with disabilities.

From the article:

Despite bipartisan support on Capitol Hill, the [Combating Autism Act of 2006] did arouse some controversy within the autism community. Self-advocates said that it focused too little on services and gave practically no attention to the needs of autistic adults.[55] They considered autism part of their identity and took offense at the notion that it was an enemy that “kidnapped” children. The Autism Self-Advocacy Network (ASAN) criticized the law’s title as “hurtful and stigmatizing,” and it launched a hashtag campaign, #StopCombatingMe. The self-advocates’ efforts had an effect: the 2014 reauthorization addressed some of their substantive concerns and gave the law a different name: the Autism Collaboration, Accountability, Research, Education, and Support Act, or the Autism CARES Act. Congressional Republicans did not complain that the title change was “politically correct.” They supported the reauthorization, which passed by voice vote in the House and unanimous consent in the Senate.[56]

The story was similar with the next reauthorization. A press release put it this way: “U.S. Senators Mike Enzi, R-Wyo., and Bob Menendez, D-N.J., senior members of the Senate Finance Committee that sets national health policy, today applauded the unanimous, final passage of the Autism Coordination, Accountability, Research, Education and Support (CARES) Act of 2019 that, for the first time, considers the needs of individuals with autism spectrum disorder (ASD) well into adulthood and throughout their lifetime.”[57] Donald Trump tweeted out a photo showing his Sharpie signature on the bill, saying: “Today, I was proud to sign the Autism CARES Bill! We support research for Americans with Autism and their families. You are not forgotten, we are fighting for you!”[58] Just as he was acknowledging this achievement of the “shadow Congress,” the House was taking the first steps that would lead to his impeachment.

...

Despite notable exceptions, disability politics has mainly remained in the “shadow Congress,” where calm deliberation and bipartisanship are the norm. But “bipartisan” does not always mean “good.” Even when bills go through the normal legislative process without shouting and name-calling, the results may disappoint many stakeholders.

Such disappointment spans the range of programs affecting people with disabilities – especially IDEA. At least through 2023, as noted earlier, Congress has never approved “full funding” of the law: 40 percent of the average per pupil expenditure for special education. In many places, parents complain of inadequate support for their children. For decades, lawmakers have proposed legislation to meet the funding level that the 1975 bill had promised. One obvious problem is cost. In 2021, the National Education Association estimated that the funding gap stood at about $36 billion.[84] And even meeting that mark might not be enough. Recent research suggests that the distribution of federal special education funds has become more inequitable across states.[85] Accordingly, Congress would need to consider funding formulas, not just aggregate spending.

 

ASF Lobbyist Argues for "Profound Autism" Designation

 In The Politics of Autism, I write:

The most basic questions trigger angry arguments. For instance, into what category do we put autism in the first place? In 2013, President Obama said that “we’re still unable to cure diseases like Alzheimer's or autism or fully reverse the effects of a stroke.” The language of “disease” and “cure” offends some in the autism community. “We don’t view autism as a disease to be cured and we don’t think we need fixing,” says Ari Ne’eman of the Autistic Self-Advocacy Network. “We do feel comfortable with the word disability because we understand what it means.” From this perspective, autism is difference that requires accommodation, not an illness that requires eradication. Adherents of this position liken autism to homosexuality, which psychiatrists once deemed to be a  disorder. Conversely, some parents take offense at opposition to a cure. “Anyone with the mental and verbal ability to challenge autism research is not autistic on a scale that I care to recognize,” writes autism parent James Terminello. “Opposition to finding a cure is particularly hurtful to parents who still mourn the loss of the child that could have been. A line has been crossed.”

Craig Snyder, former chief of staff to Sen. Arlen Specter and lobbyist for the Children’s Health Act of 2000 and the Combating Autism Act of 2006, at The Hill: 

By 2014, the Combatting Autism Act couldn’t be reauthorized without changing its name to the Autism CARES Act, a piece of Orwellian language that marked a radical shift in the policy the law was intended to codify.

Kids who can’t speak, many with severe intellectual disability and serious physical health problems, and their families, are aggregated in popular culture with celebrities who sometimes self-diagnose as autistic —even as they suffer undiagnosed physical pain (for example, from GI disease) or seizures, often “treated” with completely inappropriate anti-psychotic medications and leather restraints, confronted by and harmed by police without training in their special needs, or as they wander into harm’s way or accidental deaths.

If someone had told me that in 2023 sufficient resources would not have been mustered to determine the basic biology of profound autism and to turn understanding of causation into medical treatments, and that those awaiting breakthroughs would have such a pathetic infrastructure of services, I simply would not have believed it. That is why I’ve rejoined this cause as lobbyist for the Autism Science Foundation.

...

The Autism Act is again coming up for reauthorization, allowing accountability for taxpayer dollars and learning from experience about policies’ effectiveness.

The millions who love someone afflicted with profound autism will advocate for people who cannot speak for themselves, insisting that the Congress and President Biden make the crucial distinction between profound autism and the neurodiversity represented by ASD self-advocates, and, with respect to profound autism, recommit to combatting it and seeking its ultimate cure.

Coordination

In The Politics of Autism, I discuss the policy paradoxes of the issue.  I presented a paper titled "Autism and Accountability" at the 2020 Annual Meeting of the American Political Science Association.  

The abstract:

We expect policymakers to be accountable to the public for their handling of public issues. The case of autism presents fundamental difficulties. First, the boundaries of autism have shifted over the years, and they remain contested. Second, there are multiple publics with radically different views about the character of the issue. Third, there is no single “autism policy.” Instead, the issue spans multiple issue areas where responsibility is diffused and the connections between policy outputs and outcomes are difficult to establish. The paper ends with modest recommendations for improving our knowledge base.

Full text:  here: https://www.scribd.com/document/475658529/Autism-and-Accountability

From the 2023 IACC Draft Strategic Plan: 

Autism- and disability-related programs exist at numerous federal agencies to address a wide variety of issues ranging from health, research, disability services, justice, housing, employment, transportation, military needs, communication, and other diverse issues. Given the large size and distributed nature of federal activities, the U.S. Congress and federal agencies have also put in place several structures to coordinate federal activities around disabilities and, in some cases, autism specifically. These coordination structures foster interdepartmental and interagency communication and collaboration on issues that are essential to autism and disability-related federal activities.

The Interagency Autism Coordinating Committee (IACC) is a foundational part of the federal coordination structure for autism that was created under the Children’s Health Act of 2000 (Public Law106-310), reconstituted under the Combating Autism Act of 2006 (CAA; Public Law 109-416), and most recently reauthorized under the Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act of 2019 (Public Law 116-60). It is the only autism-specific interagency federal advisory committee in the federal government. The Autism CARES Act of 2019 outlines requirements for the membership of the IACC, which includes officials representing an array of federal departments and agencies and public members who represent a variety of perspectives within the autism community. Collectively the committee provides advice to the HHS Secretary concerning issues related to autism and coordinates federal autism efforts. 

In 2014, Congress added a new component to the federal coordination structure by requiring in the Autism CARES Act of 2014 the designation of a National Autism Coordinator (NAC), “an existing official within the Department of Health and Human Services to oversee, in consultation with the Secretaries of Defense and Education, national ASD research, services, and support activities.” The duties of the NAC include coordinating and implementing federal autism research, services, and support activities, taking into account the IACC Strategic Plan, as well as ensuring that federal ASD efforts are not unnecessarily duplicative. The NAC accomplishes cross-agency and cross-departmental coordination in part through the activity of the Federal Interagency Workgroup on Autism (FIWA), an all-federal working group of representatives from multiple federal departments and agencies, most of which are also represented on the IACC. The NAC has led the development of several comprehensive reports to Congress on federal autism activities and other projects requiring cross-agency collaboration.

A third layer of interagency and intra-agency coordination is composed of a series of federal advisory committees and coordinating committees that work on specific issues related to autism and disabilities. At the National Institutes of Health (NIH), the NIH Autism Coordinating Committee coordinates NIH intra-agency efforts on autism research. Other advisory committees and agencies across the federal government that contribute to federal coordination on issues of relevance to autism and disabilities include:

• 2021-2023 IACC Strategic Plan for Autism Research, Services, and Policy Draft January 2023 11

• Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act Council (family caregiver issues)

• President’s Committee for People with Intellectual Disabilities (intellectual disabilities), theInteragency Committee on Disability Research (disability research) 

• Federal Partners in Transition (youth with disabilities)

• National Council on Disability (a federal agency for disability policy)

• Interdepartmental Serious Mental Illness Coordinating Committee (mental illnesses that may cooccur with autism)

• Federal Communications Commission Disability Advisory Committee (communication technology for people with disabilities)

• National Advisory Committee on Individuals with Disabilities and Disasters (disaster preparedness and response)

• Advisory Committee on Accessible Air Transportation - ACCESS Advisory Committee (disabilities and air transportation).

 Each of these advisory committees focuses on specific topics related to disabilities, which are informative to the efforts of the IACC to coordinate autism activities.

Origins of Autism Legislation

In The Politics of Autism, I write:

No government agency has exclusive jurisdiction over all of these areas. The federal government takes the lead with some, while states and localities may be the main arenas for others. At each level, different bureaucracies deal with different aspects of autism. Courts and private organizations also play important roles in autism policymaking. Each place on the autism policy map has its own jargon and rules, hence the “alphabet soup” that bedevils parents.

Jerry Carino at The Asbury Park Press:

One day in 1997, two parents from Brick met with Rep. Chris Smith for three hours to discuss a growing but poorly understood health issue.

Bobbie and Billy Gallagher were raising two toddlers with autism, and their concerns prompted Smith to examine how the federal government was addressing the disorder.

“Nothing was being done for autism — $287,000 was being spent,” recalled Smith, whose Congressional district covers part of Monmouth, Ocean and Mercer counties. “That doesn’t even buy a desk with a person behind it.”

..
On Thursday, as Congress sent the Autism CARES Act to Trump, Smith thought of the Gallaghers, whose two toddlers Alana and Austin are now adults in their 20s. The family's push back in 1997 helped lead to the enactment of Smith's first bill on the issue — the Autism Statistics, Surveillance, Research and Epidemiology Act of 2000, which opened the door for comprehensive federal funding.

“There was very little research going on and the Gallaghers were desperate for help,” Smith said. “The CDC didn’t want my first bill. Now they’re more than happy to talk about it.”

Autism Services: What You Get Depends on Where You Live

In The Politics of Autism, I write:

A child’s chances of getting an autism label vary by geography as well as social class. On a broad level, state definitions of autism are consistent with the federal definition. At the practical level, there are differences, especially when it comes to assessing social and emotional development, health, vision, hearing, and motor skills. In 2011, seven percent of students receiving IDEA services nationwide had an autism determination. But the figures varied by state. The states with the highest share of IDEA students with identified autism were Minnesota (12.8 percent), Oregon (10.6 percent), and Connecticut (10.1 percent). The lowest were Iowa (1.1 percent), Puerto Rico (2.1 percent), Montana (2.8 percent), Oklahoma and West Virginia (3.7 percent each).  

At The Journal of Disability Policy Studies, Sarah S. Mire, K. R. Hughes, Jamie K. Manis, Robin P. Goin-Kochel, have an article titled Autism Treatment: Families’ Use Varies Across U.S. Regions."  The abstract:

Many treatment types are available for children with autism spectrum disorder (ASD), and various factors affect treatment selection. This study investigated potential variations in treatment types selected by parents in all four U.S. Census Bureau Regions + Montreal, Quebec. Data from 2,647 families from the Simons Simplex Collection were analyzed, and statistically significant differences in using various treatment types were found, depending on where families lived. For example, compared with other Regions, families from the Northeast were more likely to have used most treatment types queried, whereas families from the South and Midwest were more likely to have used psychotropic medications. Statistically significant differences were also found within geographical regions. Understanding variations in the use of treatment types by families affected by ASD is important in identifying needs and opportunities for services in different locations. These findings have implications for addressing families’ treatment access and use when they are considered in terms of both research and practice policies.

From the article:

This may be in part related to where in the country children are more or less likely to receive an ASD diagnosis. In a recent large-scale analysis by Hoffman and colleagues
(2017), children born in New England (i.e., Northeast Region) had higher odds of ASD diagnosis, whereas children who lived in the central and southern (i.e., South Region) parts of the United States had lower odds. Similarly, in our study, almost all treatment types were significantly more likely to have been used by families from the Northeast
Region. On the contrary, families in the South Region were significantly more likely to report having never received treatment, though within this Region, the East South Central Division (includes Kentucky [KY], Tennessee [TN], Mississippi [MS], and Alabama [AL]) was the greatest contributor to this finding, which highlights the  importance of considering variations within (not only between) the large Regions of the United States. The alignment of our findings with those of Hoffman et al. (2017) underscores the relationship between diagnostic and treatment services. 

The interplay between research and practice policies, both of which affect ASD treatment, is complex. In 2016, the National Conference of State Legislatures (NCSL;
http://www.ncsl.org/research/health/autism-policy-issuesoverview.aspx) overviewed federal responses to increased ASD diagnostic prevalence which include federal acts (e.g., Autism CARES Act of 2014, Children’s Health Act of 2000, Combating Autism Act of 2006) that resulted in National Institutes of Health (NIH) and Centers for Disease
Control (Centers for Disease Control and Prevention [CDC]) research initiatives as well as in development of the national Interagency Autism Coordinating Committee (IACC). Ascertaining the direct impact of federal actions on individual families’ treatment selections is complicated, but federal policies ultimately do affect treatment, such as
through allocation of large-scale funding and resources. We consider our findings about ASD treatment patterns with regard to both research- and practice-related policies.

Hoffman, K., Weisskopf, M. G., Roberts, A. L., Raz, R., Hart, J. E., Lyall, K., . . . Vieira, V. M. (2017). Geographic patterns of autism spectrum disorder among children of participants in Nurses’ Health Study II. American Journal of Epidemiology, 186, 834–842. doi:10.1093/aje/kwx158

More Reax to Clinton's Autism Plan

In The Politics of Autism, I discuss the issue's role in presidential campaigns.  As I explain in the book, Hillary Clinton has a long history with the issue, and has issued an autism policy statement for the 2016 campaign.  A previous post noted some reactions to the plan, and here is an update.

Dylan Matthews at Vox:

It's helpful to contrast Clinton's agenda with that of the Combating Autism Act, which George W. Bush signed into law in 2006. The first problem with the act was its name, which implied that the goal of public policy should be to stamp out autism, rather than helping autists.

This is troublesome both because it does nothing for autistic people alive today, and because many on the autism spectrum (myself included) don't view autism as wholly negative and argue that society could benefit from acknowledging and  celebrating neurodiversity. We don't want autism to be "combated"; we want autistic people to be supported. That means government policy that provides services that enable people on every point in the autism spectrum to learn, work, and find acceptance in their communities.

But the law was also troubling because of how some $945 million in federal spending authorized by the act was allocated. A 2013 report from the Government Accountability Office found that of 1,206 autism research projects funded by the federal government from 2008 to 2012 (after the Combating Autism Act was passed), a little under half focused on either the biology behind autism or on the condition's causes. By contrast, only 21 percent researched treatment and interventions.

[See chapter 3 of The Politics of Autism for an extensive discussion of the politics of autism science.]

Autism Speaks:

Autism Speaks urges all the presidential candidates to come forward with a plan to address the needs of people living with autism. We have provided a blueprint that Autism Speaks believes is essential to good public policy. A national plan should be built around enhanced state and federal advocacy, groundbreaking advances in science and research, and a full discussion of the barriers to, and opportunities for, addressing the housing, transition and employment needs of those with autism.

AT NPR, Kelly McEvers interviewed Ron Fournier:

MCEVERS: So her plan calls, among other things, for, you know, more access to insurance compliance with Medicaid, more outreach on autism, a national campaign, help for people with autism to transition from school into adult life. I mean, how likely do you think it is that this could actually happen?
FOURNIER: Probably not very likely because one, all of that is very expensive. Two, you would have to get a polarized Washington, D.C., working together to get it done. And three, you know, it's fair to have doubts about her ability to be able to bring a fractured Washington together. So my guess is it's not very likely, but even then, just the fact that she's put it on the national agenda is a big first step. And I hope I'm wrong. I hope she can get it done.
MCEVERS: That's Ron Fournier. He has an upcoming book about raising his son. It's called "Love That Boy." Thanks so much.
FOURNIER: Thank you very much.

House Members Urge Government to Heed Self-Advocates

From ASAN:

The Autistic Self Advocacy Network applauded five leading congressional champions for autism services this morning for authoring a letter sent yesterday to the Department of Health and Human Services (HHS) and the National Institutes of Health (NIH). The letter, signed by Rep. Jan Schakowsky (IL-9), Rep. Tammy Duckworth (IL-8), Rep. Kathy Castor (FL-14), Rep. Jackie Speier (CA-14) and Rep. Paul Tonko (NY-20), expressed concern with lack of representation of autistic people in programs funded by the Autism CARES Act, recently passed legislation governing federal autism programs.

The letter notes the severe underrepresentation of autistic people on the Inter-Agency Autism Coordinating Committee (IACC), which is responsible for overseeing all federal funds used on autism research, and in federally-funded programs on autism and other intellectual and developmental disabilities. The letter also expresses concern over the disproportionately small percentage of research funding that focuses on quality of services (2.4%) and adults on the autism spectrum (1.5%).

Obama Signs Autism CARES Act

Michelle Diament reports at Disability Scoop:

With little fanfare, President Barack Obama signed a reauthorization of the nation’s primary autism legislation that includes more than a billion dollars in federal funding for the developmental disorder.

Signed on Friday, the law calls for $260 million annually through 2019 for autism research, prevalence tracking, screening, professional training and other initiatives.

The measure known as the Autism Collaboration, Accountability, Research, Education and Support Act, or Autism CARES, serves as a renewal of what’s previously been called the Combating Autism Act. That law, which was first enacted in 2006, was set to expire September 30.

Autism CARES Passes Senate

A Thursday release from Senator Robert Menendez (D-NJ):

U.S. Senator Robert Menendez (D-NJ) today hailed the Senate's passage of the Autism Collaboration, Accountability, Research, Education and Support (Autism CARES) Act, which is the identical companion to Menendez’s Senate bill, S. 2449. The unanimous Senate passage was the final Congressional step needed to get the bill to the President’s desk to be signed into law.

“The Senate’s action today ensures these vital autism programs are reauthorized and continue providing research, services and supports individuals with autism and their families have come to rely on,” said Sen. Menendez. “The Autism CARES Act is a model of bipartisan, bicameral cooperation – and I am proud I was able to work on it and look forward to seeing the President sign this critical legislation into law.”

According to a recent report by the CDC, autism rates climbed nearly 30% between 2008 and 2010, to 1 in 68 children with an Autism Spectrum Disorder, from 1 in 88 children. In New Jersey, that prevalence is 1 in 45 children.

Senator Menendez is the leading advocate in Congress for individuals with autism and their families, having secured the passage of the 2011 reauthorization of the Combating Autism Act. Additionally, he authored the Assistance in Gaining Experience, Independence and Navigation (AGE-IN) Act to address the needs of youth and young adults as they transition out of school-based support to independent adulthood. Several key policies from this legislation are incorporated in the Autism CARES Act.

Senate Committee Approves Autism CARES

Elise Viebeck reports at The Hill:

The Senate Health, Education, Labor and Pensions (HELP) Committee quickly approved legislation Wednesday to reauthorize federal autism research and services for five years.

The bipartisan bill, which now advances to the Senate floor, is identical to a measure passed by the House on Tuesday night and has a strong likelihood of becoming law this summer.
...

The new legislation would require the Health and Human Services secretary to designate a deputy to oversee federal autism research and services. The official would help coordinate activities related to autism across federal agencies to ensure they are not duplicative.

The measure also orders the government to study the needs of autistic children as they transition to adulthood.

The HELP Committee advanced the measure on a voice vote Wednesday with no amendments, according to a committee spokeswoman.

House Passes Autism CARES

The Hill reports:

The House on Tuesday gave voice vote approval to legislation to reauthorize federal autism research and assistance programs for five years.

The current three-year authorization of autism research and support programs expires Oct. 1.

...
A provision in the bill as amended during a House Energy and Commerce Committee markup would require the Health and Human Services secretary to assign a deputy to oversee federal autism research and services and ensure programs are not duplicative.

The language came in response to a Government Accountability Office finding last year that 84 percent of current autism research projects have potential to overlap.

Autism advocacy support groups, including Autism Speaks, have endorsed the measure.

The Congressional Budget Office has estimated that the legislation would cost $1.3 billion over fiscal 2015 to 2019.

Autism CARES Provisions

At Left Brain/Right Brain, Matt Carey summarizes provisions of S. 2449, the Autism CARES Act.

1) the title is changed from the previous “Combating Autism Act” Combating is noted in the new bill where the word is being stricken from the previous law.
2) the bill would extend the law until 2019.
3) the Interagency Autism Coordinating Commitee would stay as the advisory/coordinating vehicle for autism research
4) The bill designates that the Secretary of the Department of Health and Human Services will chose someone within HHS to oversee autism research, including implementing the IACC’s Strategic Plan and insuring that research is not unnecessarily duplicative.
5) In a number of instances adults are specifically mentioned in the new bill. For example, “by inserting “for children and adults” after “reporting of State epidemiological data””. I.e. epidemiological data will in the future include adults.
6) The IACC will have between 1/3 and 1/2 members who are public representatives. I.e. a minority but a sizable minority will be public members.
7) If I read this correctly, IACC members will continue to be appointed by the Secretary of HHS. They will serve for 4 years, and can be renewed. If a member resigns, s/he will be replaced by someone chosen by the same method as the other appointees.
8) The IACC will continue to produce the Strategic Plan and a Summary of Advances in autism research.
9) In addition, the Secretary of HHS will be required to produce a report “Report on Young Adults and Transitioning Youth”
10) Funding levels–amounts which the bill authorizes to be appropriated–will increase from $161M/year to $190M/year.

Click here for his summary  of the House companion, HR 4631.

Different Views on Autism CARES

From Autism Speaks:

The Consortium of Citizens with Disabilities (CCD), a coalition of 110 national disabilities organizations, has announced its support for Autism CARES, the amended version of legislation before Congress that would preserve federal funding for autism activites over the next five years. The bill has been introduced in the Senate while the House version has already cleared committee and is headed to a floor vote with 79 co-sponsors.

"CCD supports this compromise bill and urges the House and Senate to move the bill forward quickly and not let this law expire," the consortium announced in a statement issued by its Autism Task Force co-chairs from The Arc, Autism Speaks, the National Disability Rights Coalition, the Association of University Centers on Disabilities, and the National Respite Coalition.

From The Age of Autism:

Autism research way to [sic] little, and misdirected

Please contact your member of the House of Representatives in Washington, DC and ask him or her to reject House Resolution HR. 4631 and Senate Bill S. 2449, the reauthorization (refunding) of the former Combating Autism Act. In a truly bizarre move the bill has been renamed the Autism CARES (Collaboration, Accountability , Research, Education and Support) Act. This was done to placate the people who think that there is nothing wrong with autism and that we should not look for the causes, treatments and possible cures for autism.

From the Autistic Self-Advocacy Network:

ASAN is pleased to note that both the Senate and House re-authorization bills have abandoned the title “Combating Autism Act”. For the first time in eight years, the federal government will no longer be in the business of “combating autism”. We applaud the bill sponsors for hearing the concerns of autistic people and our families with respect to the title of the legislation. Unfortunately, the content of the new Autism CARES Act does not include critical provisions necessary to advancing quality of life for autistic people and our families. Despite productive and ongoing dialogue with the legislative sponsors, lobbying from outside groups prevented the inclusion of provisions focused on expanding employment opportunities for autistic adults, increasing the representation of self-advocates in the research process, opening up funding streams to services and adult research and placing greater emphasis on underserved communities, such as racial and ethnic minority groups, women and girls and adults on the autism spectrum.

Autism CARES Advances

From Autism Speaks:

Legislation to renew and rename the Combating Autism Act was introduced in the Senate while a House version cleared committee and was sent to the House floor. Renamed Autism CARES (the Autism Collaboration, Accountability, Research, Education and Support Act), the legislation is now identical in both houses of Congress and would continue federal funding for autism research and other activites at an annual $260 million level for another five years.

...
The House Energy & Commerce Committee added the Senate changes to HR.4631, which had been named the Combating Autism Reauthorization Act (CARA) of 2014, and then sent the bill to the House floor for a vote.

“The bipartisan Autism CARES Act represents our strong commitment to continuing the groundbreaking work being done to address autism and build the foundation for these efforts for years to come,”said Menendez.

“I am particularly pleased this bill includes provisions based on my legislation, the AGE-IN Act, to better address the needs of individuals with autism as they grow into adulthood and no longer have the support of school-based programs," he said. "I’m optimistic the House will quickly adopt this language as they continue work on their bill so we can speak with one voice about the importance of reauthorizing these vital programs.”
...
Both the House and Senate bills would continue federal funding for five years, reconstitute the Interagency Autism Coordinating Council (IACC) and strengthen accountability over federal research funding to avoid any duplication of effort.

A "National Autism Spectrum Disorder Initiative" would be created by elevating an existing official at HHS to serve as the key point person coordinating the federal government's various autism efforts. In addition, a new study would be commissioned to focus on the needs of young adults and transitioning youth with an autism spectrum disorder or other developmental disability, as well as the challenges they face transitioning from school-based services to adult services.

From ASAN:

Regrettably, Autism Speaks and its allies actively lobbied against the inclusion of provisions expanding self-advocate representation in research, re-balancing autism research funding to support additional investments in services and adult issues, and requiring the LEND programs to attempt to recruit trainees on the autism spectrum and with other developmental disabilities. We find it profoundly disturbing that some in the autism community continue to lobby against any measures amplifying the voices of those most directly impacted by federal autism policy: autistic people ourselves.

ASAN calls upon our allies in the Autistic, autism and broader disability communities to work both with us and with the administration after passage of the Autism CARES Act to ensure that the implementation of the law is consistent with the provisions of the Schakowsky Amendment, which sets a benchmark for including self-advocate voices and taking steps to address long standing inequities in autism research and service-provision. Each of these provisions can be implemented through executive action absent new statutory language. To quote Rep. Schakowsky, “Increasing the voice of self-advocates will only improve our efforts.”

CARA is Now Autism CARES

Self-advocates have long objected to the name of the Combating Autism Act.  In this year's reauthorization, they have mounted a hashtag campaign, #StopCombatingMe.  See this video from ASAN:




In response, House and Senate sponsors of reauthorization are renaming the bill.  Instead of the Combating Autism Reauthorization Act (CARA), the bill is now Autism CARES.  A release from Senator Robert Menendez:

U.S. Senators Robert Menendez (D-NJ) and Mike Enzi (R-WY) introduced the Autism Collaboration, Accountability, Research, Education and Support Act (Autism CARES) S. 2449 to ensure federal autism programs created under the Combating Autism Act continue for five years. The legislation also reforms these programs to increase coordination across federal agencies and provide a comprehensive understanding of the issues facing transitioning youth and adults with autism.

“The bipartisan Autism CARES Act represents our strong commitment to continuing the groundbreaking work being done to address autism and build the foundation for these efforts for years to come,” said Sen. Menendez. “I am particularly pleased this bill includes provisions based on my legislation, the AGE-IN Act, to better address the needs of individuals with autism as they grow into adulthood and no longer have the support of school-based programs. I’m optimistic the House will quickly adopt this language as they continue work on their bill so we can speak with one voice about the importance of reauthorizing these vital programs.”

According to a recently released report by the CDC, one in 68 children nationwide are being diagnosed with an autism spectrum disorder (ASD) by the age of eight. This represents an increase from 1 in 88 children just two years ago. New Jersey has the highest rate of ASD diagnosis with 1 in 45 children.

Additionally, a new study published online today by the Journal of American Medical Association's Pediatrics site shows that the lifetime cost for supporting an individual with autism is $1.4 million. The study also finds that adulthood needs for housing and residential services account for these individuals’ highest costs; for children, the highest costs are associated with special educational services and the loss of parental income while caregiving. The Autism CARES Act addresses these pressing concerns by continuing programs that expand research and improve coordination of services to maximize the benefit to individuals and their families.
The Autism CARES Act maintains support for the work established under the Combating Autism Act of 2006 and the Combating Autism Reauthorization Act of 2011. Specifically, the Autism CARES Act:

Addresses the concerns of many in the autism community about the name of the underlying law: the Combating Autism Act. Changing the name of the bill will more accurately reflect the nature of the programs without alienating the very people these programs serve.

Establishes the National Autism Spectrum Disorder Initiative, which elevates an existing official at the Department of Health and Human Services (HHS) to be the key point person coordinating autism efforts. Reforms are also made to the Interagency Autism Coordinating Committee (IACC) to provide an increased focus on reducing unnecessary duplication among autism programs and to provide Congress and the President with more frequent updates on the progress made in achieving the goals of the IACC’s strategic plan.

Calls for a new report to be written focusing exclusively on the needs of young adults and transitioning youth with an ASD or other developmental disabilities and the challenges they face transitioning from school-based services to those needed during adulthood. The findings in this report will form the foundation for future efforts – both within the government and with private services providers – to ensure an evidence-based, comprehensive and outcomes-oriented approach to services and supports for transitioning youth and young adults as they age-out of the school-based support system.

Senator Menendez is the leading advocate in Congress for individuals with autism and their families, having secured the passage of the 2011 reauthorization of the Combating Autism Act. Additionally, he authored the AGE-IN Act to address the needs of youth and young adults as they transition out of school-based support to independent adulthood. Several key policies from this legislation are incorporated in the Autism CARES Act.

A Look at CARA

At The Taxpayer's Tab, the National Taxpayers Union Foundation looks at CARA:

The Bill: H.R. 4631, the Combating Autism Reauthorization Act of 2014
Cost Per Year: $29 million ($145 million over five years)
Number of Cosponsors: 71 House Members

Autism is a neurological disorder that inhibits brain development to varying degrees, especially in the areas of verbal communication and social interaction. It’s estimated that autism affects one in 50 children between the ages of 6-17 years old, and statistics show that diagnoses have become more frequent in recent years. In 2006, President George W. Bush signed into law the Combating Autism Act, which provided nearly $1 billion in funding for the National Institutes of Health (NIH), Centers for Disease Control and Prevention (CDC), and state and local agencies to conduct research on treatment options and to raise awareness about early detection. In 2011, President Obama signed legislation that reauthorized the bill’s provisions through 2014. The bill has provided almost $1.7 billion in total funding since it was originally enacted.

As those authorizations are set to expire, Congressman Christopher Smith (R-NJ) has introduced a bill that would extend those programs for another five years. H.R. 4631 would continue the original legislation’s provisions through 2019 at current funding levels except for the Interagency Autism Coordinating Committee (IACC), which would see an increase of $29 million per year. The Committee is tasked with providing information to the Secretary of the Department of Health and Human Services (HHS) on any federal activity that relates to autism research or outreach. Additionally, the bill would create within HHS a new National Autism Spectrum Disorder Initiative, a five-member board appointed by Congress that would oversee a strategic plan for future research programs and objectives.

Congressman Smith said that the bill would preserve functions critical to improving public health, stating in a press release that “[t]his is a critical investment that is working to determine the cause of Autism Spectrum Disorder, identify autistic children as early as possible to begin treatment, and producing better awareness, new therapies and effective services. The quality of life of many children is at stake, as it is with young adults who age out of the support services in educational systems.”

Recently the IACC released a report to Congress on the progress it made over FY 2010-2012 in accomplishing the Combating Autism Act’s (CAA) goals. It includes detailed breakdowns of how each of the 9 agencies within HHS spent CAA funds. The report claimed that NIH funding “... has improved the ability to screen and diagnose [autism] earlier in life; advanced our understanding of the potential causes of autism; and informed innovative treatments, interventions, and services for individuals with [autism].”

Cosponsors include 30 Democratic and 41 Republican Representatives.

The Bottom Line: The Combating Autism Reauthorization Act would extend funding at current levels for several autism research and outreach efforts, and provide additional strategic management and oversight for those programs, totaling $145 million over five years in new spending.

CARA Controversy

Elise Viebeck reports at The Hill:

House lawmakers took a step toward moving a landmark autism-fighting law following a government investigation found that most federal autism research has the potential to be duplicative.

The Energy and Commerce Subcommittee on Health approved an amendment Wednesday that would require the Health and Human Services secretary to designate a deputy to oversee federal autism research and services.

The official would help coordinate anti-autism activities across federal agencies and ensure the projects "are not unnecessarily duplicative," according to the amendment.

The language comes after the Government Accountability Office found last year that 84 percent of autism research projects under current law have the potential to cover each other's ground.

Lawmakers from both parties praised the amendment and predicted it would improve existing programs.

Last week, she reported on  opposition from the Autism Policy Reform Coalition (APRC) is against the bill, arguing a drastic overhaul is needed in order for the money to be used effectively.

"[The rise in autism] is nothing short of astronomical, and I would say, cataclysmic," said Craig Snyder, a longtime autism lobbyist and chief spokesman for the APRC.

...
Snyder’s group is taking a hard line, arguing it would be better for lawmakers to let the autism act expire on Sept. 30 rather than continuing it in its current form.

"We believe it is better for the country to face the end of these programs and to have a serious dialogue about what went wrong than to put another seal of approval on bad policy," Snyder said.

Legislation from Menendez and Enzi is expected to include several of the reform coalition’s top priorities, Snyder said.

First, Snyder’s group wants to centralize federal autism research within a new office at the NIH modeled on the Office of AIDS Research.

The office would have its own budget and direct scientific work about autism in line with a strategic plan, shifting away from the current model of organic studies funded out of general NIH accounts.

Snyder argued that federal research on autism is overly concerned with genetics at the expense of exploring possible environmental risk factors and ways of treating patients.

Other agencies would also see big changes under the APRC plan.

The CDC, for example, would be required to revamp its autism prevalence survey and conduct it every year instead of every two years.

The Health Resources and Services Administration would be tasked with creating clinical guidelines to ensure that the appropriate clinician treats someone with severe autism during a medical emergency.

And finally, the APRC would create a new body to coordinate autism policy across federal agencies, similar to the White House Office of National Drug Control Policy.

ASAN opposes the bill:

1) H.R. 4631 continues to use language offensive to Autistic people and our allies. We don’t want to be “combated” – we want to be supported and respected. Despite numerous complaints by the Autistic community, the legislation continues to use disrespectful and offensive language. This has to change.
2) H.R. 4631 adds four congressionally appointed members to the Inter-Agency Autism Coordinating Committee, politicizing the IACC instead of letting it focus on analyzing autism research and policy from an objective perspective.
3) H.R. 4631 fails to require additional self-advocate representation on the IACC. Shouldn’t a government advisory committee about autism require more than one autistic representative on the committee? Tell Congress that they shouldn’t be acting about us, without us.

Combating Autism Act: 2014 Reauthorization

A May 12 release from Rep. Chris Smith (R-NJ):

Rep. Chris Smith (R-04) and Rep. Mike Doyle (D-PA) today unveiled bipartisan legislation to reauthorize the Combating Autism Reauthorization Act.

“We need to work overtime to build on the successes CARA is producing for individuals with autism and their families,” said Smith, author of the bill who with Doyle founded and co-chairs the bipartisan Coalition on Autism Research and Education (C.A.R.E.). “This is a critical investment that is working to determine the cause of ASD, identify autistic children as early as possible to begin treatment, and producing better awareness, new therapies and effective services. The quality of life of many children is at stake, as it is with young adults who age out of the support services in educational systems.”

The bill, H.R. 4631, has 35 bipartisan co-sponsors.

...
Smith’s bill adds key reforms to the Interagency Autism Coordinating Committee (IACC) and safeguards to the funding allotted in the bill to ensure coordination is maximized and the taxpayers’ dollars are spent efficiently. It further increase accountability but requiring HHS to designate an individual charged with implementing IACC’s annual strategic plan and report to Congress how they are doing so.

It was almost 17 years ago, on September 13, 1997, Bobbie and Billy Gallagher, of Brick, N.J. residents with two small children with autism, walked into Smith’s office looking for help. The Gallaghers brought a focus to the issue of autism and the needs of autistic children that was missing at the federal level. Armed with data and their own research, they helped win approval of a landmark federal study and the enactment of legislation in 2000—the Autism Statistics, Surveillance, Research and Epidemiology Act (Title I, P.L. 106-310)—which created the first comprehensive federal program to combat autism.

...
Smith is the author of the 2011 law,The Combating Autism Reauthorization Act (CARA)— (now Public Law 112-32) enacted on September 30, 2011. CARA authorized autism-related programs for fiscal years 2012, 2013 and 2014 and included: $22 million for the Developmental Disabilities Surveillance and Research Program; $48 million for Autism Education, Early Detection, and Intervention, and; $161 million for hundreds of Research Grants at the National Institutes of Health (NIH), and for the Interagency Autism Coordinating Committee. Smith’s new bill reauthorizes these programs for five years.

Letter on the Combating Autism Act Reauthorization

A number of disability groups has written to Senator Robert Menendez (D-NJ), Representative Chris Smith (R-NJ) and Representative Michael Doyle (D-PA):

We, the undersigned organizations committed to advancing equality of opportunity for people with disabilities, write with regard to the upcoming re-authorization of the Combating Autism Act (CAA). As you consider re-authorizing CAA, we urge you to incorporate the need for substantive changes to reflect the priorities of autistic people and their families. Congress should make common-sense changes that will ensure that federal funds are better used to benefit the community that this legislation is designed to serve.

We are urging a re-alignment of CAA to reflect a greater emphasis on the needs of autistic adults and services as well as a more inclusive process that better represents the priorities of autistic people and their allies. As we outline below, a larger proportion of federal autism research funding should be used for the purposes of research on services and the needs of adults; autistic people should have greater representation on the Interagency Autism Coordinating Committee (IACC); the IACC should be reorganized so that it can better fulfill its mandate to create a unified strategic plan for autism research and programs; and the name of the legislation should be changed to emphasize support for, rather than antagonism toward, autistic people and their families.

... 

The signers:

American Association of People with Disabilities
Association for Autistic Community
Association of People Supporting Employment First
Association of Programs for Rural Independent Living (APRIL)
Autism Society of America
Autistic Self Advocacy Network
Autism Women’s Network
Bazelon Center for Mental Health Law
The Jewish Federations of North America
Little People of America
National Council on Independent Living
National Coalition for Mental Health Recovery
National Disability Rights Network
National Down Syndrome Congress
National Federation of the Blind
Not Dead Yet
Quality Trust for Individuals with Disabilities
TASH

Disability Scoop reports:

Stuart Spielman of Autism Speaks, which has long-championed the bill in its current form, acknowledged that there is more work to be done, citing areas like transition and employment that merit greater attention, but insisted that all components of the current law are “vital.”
“We want to build on the successes of the Combating Autism Act,” said Spielman, the group’s senior policy advisor and counsel. “There’s a lot more that needs to be done but if you look at where things were at years ago, we have made progress.”

Menendez, who has traditionally been the measure’s chief Senate sponsor, is open to some reforms of the legislation which originated in 2006 but given that this is a reauthorization of an existing law, there are limits to how much change is realistic, an aide to the senator told Disability Scoop.

Lawmakers are looking to introduce a proposal for reauthorization in the coming weeks and are aiming for approval by August, the aide said.

More on the CDC Report

CDC's new estimate of autism prevalence is generating a good deal of commentary.

From CNN:

The earlier a child is diagnosed with autism, the better their chances of overcoming the difficulties that come with the disorder.

"It's not a cure, but it changes the trajectory," says Dr. Gary Goldstein, president and CEO of the Kennedy Krieger Institute and professor of neurology at Johns Hopkins University.

"We need to continue our efforts to educate the health care community and general public to recognize the developmental problems associated with ASD and other developmental disorders at earliest age possible, so that intervention can be initiated, bad habits can be avoided and families will know what's wrong with their child," says Dr. Max Wiznitzer, a pediatric neurologist at Rainbow Babies and Children's Hospital in Cleveland who diagnoses and treats children with autism.

...[E]xperts such as Wiznitzer and Goldstein are concerned that the new CDC report is not describing the same autism that was present and diagnosed 20 years ago, when the numbers first shot up.

"Twenty years ago we thought of autism with intellectual disability. We never looked at children who had normal intelligence" -- doctors never considered that high-functioning children had autism too, says Goldstein.

Wiznitzer believes written reports can't definitively determine whether a child has autism. You need to see the child to complete a diagnosis, which the CDC experts did not have the opportunity to do.

"This report tells us that there's a significant number of children in the states where they were assessed that have social differences and a pattern of behaviors that can be represented by ASD, but may also be due to other conditions that superficially can have similar features, such as social anxiety, ADHD with social immaturity and intelligence problems," he says.

The Philadelphia Inquirer reports:

A new federal report shows yet another increase in the percentage of children with autism, with New Jersey having the highest rate of 11 states studied.

...
Walter Zahorodny, an epidemiologist and psychologist at Rutgers New Jersey Medical School who directed data collection in New Jersey, said the new report should put to rest the argument over whether the increase in autism diagnoses stems from growing awareness or reflects growing numbers of children with the disabling condition.

"It's a true increase," he said. "It's a change of great magnitude. It's silly to go on debating that." He expects the numbers to climb higher before they plateau.

Jennifer Pinto-Martin, an epidemiologist in the University of Pennsylvania School of Nursing who worked on previous versions of the report, is not so sure. While the CDC has been using the same definition for many years, she said, changing attitudes have made it easier to get the diagnosis.

Both agreed that one reason New Jersey's numbers are high is that the state has particularly good record-keeping and services.

Autism Speaks reports:

During a press conference hosted by Autism Speaks following the CDC announcement, Senate and House leaders called for the reauthorization of the Combating Autism Act (CAA) and enactment of the ABLE Act to help address the "aging-out" issue as an estimated 500,000 children mature into adulthood over the next 10 years.

Enacted in 2006 and reauthorized in 2011, the CAA has dedicated $1.7 billion in federal funding for research through the National Institutes of Health, the prevalence monitoring conducted by the CDC, and detection training through the US Department of Health and Human Services. The law will expire September 30 unless Congress acts.

The ABLE Act, (Achieving a Better Life Experience Act), would allow the creation of tax-free savings accounts for individuals with disabilities to provide for their housing, transportation, job support, education and other needs. The legislation has extraordinary support with 70 cosponsors in the Senate and 350 of the 435 House members.

"To my mind, it’s a clarion call to continue -- in fact increase -- our efforts on the federal level into research and services and support for individuals with autism and their families," said Sen. Robert Menendez (D-NJ), the Senate sponsor of the 2011 CAA reauthorization, during the Autism Speaks press conference.

"I hope we can think about at least creating some new opportunities" in the new CAA reauthorization legislation, Menendez said. "This aging out question is a critical question for families across (New Jersey) and across the country. The challenge on the autism disorder spectrum doesn’t stop at age 18 or 21. It continues."

The House sponsor of the 2011 reauthorization bill, Rep. Chris Smith (R-NJ), also demanded action

"The information is not just disturbing, it is numbing," Smith said. "Statistics are sometimes bandied around Washington and people pay scant notice to it. But this ought to mobilize not just the federal government, but state governments and local governments to work in partnership."