Brick Township

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

Jerry Carino at The Asbury Park Press:

In the mid-1990s, Brick Township residents Bobbie and Billy Gallagher were desperate to find help for their two young children with autism.

“I had started attending a parents’ support group, and it seemed like there were a lot of parents sitting around the table whose children had been newly diagnosed,” Bobbie Gallagher recalled. “So I sent out a survey to parents in the town asking if anybody had a child with autism, because it seemed like there were so many of them.”

Sending out a survey was a lot harder back then, at the dawn of the electronic age.

“We got zero help from the school district with that survey,” Billy Gallagher said. “Although the school district sent home who to vote for in the school-board elections – that made it into kids’ backpacks – our survey would not. But we found the bus drivers and the aides on the buses helpful in distributing it.”

Between that, the bulletin board in the Brick branch of the Ocean County Library, and a small ad in a weekly newspaper, the Gallaghers got enough surveys out to produce eye-opening feedback – 45 Brick residents answered in the affirmative.

New Jersey’s department of health declined to act on the survey, but it got the attention of the Gallaghers’ congressman, Republican Chris Smith, who met with them in September of 1997.

“He said the information we gathered was important and he would take this to the next level,” Bobbie Gallagher said.

In 2000, aided by a public push from NFL quarterbacks Dan Marino and Doug Flutie – both of whom have children with autism – Smith’s bill for autism research became codified in federal law. Those provisions have expanded over a quarter-century, and last month what has become known as the Autism CARES Act was reauthorized by Congress and signed by President Joe Biden. The law funds $1.95 billion over five years for autism research and intervention programs at the National Institutes of Health, Centers for Disease Control, and the Health Resources and Services Administration.

 

House Passes Autism CARES Act

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.

From Representative Mike Doyle (D-PA):

U.S. Representative Mike Doyle (D-PA) announced today that bipartisan legislation to reauthorize federal programs and activities that help individuals with autism spectrum disorder (ASD) and their families has been approved by the U.S. House of Representatives.

This bill, the Autism CARES Act of 2019 (H.R. 1058), is supported by a broad coalition of autism and disability advocate organizations, including Autism Speaks, the Autism Society of America, the Association of University Centers on Disabilities, and the American Academy of Pediatrics. A companion bill (S. 427) was introduced in the Senate by Sens. Bob Menendez (D-NJ) and Mike Enzi (R-WY).
...
The Autism CARES Act of 2019 would reauthorize the Autism CARES Act of 2014 (P.L. 113-157). It would authorize over $1 billion in funding for programs at the National Institutes of Health (NIH), Centers for Disease Control (CDC), and the Health Resources and Services Administration (HRSA) over five years. At CDC, the funding would go to developmental disability surveillance and research; at HRSA, the funding would cover education, early detection and intervention; at NIH, the funding would cover the expansion and coordination of autism-related activities.

Among other actions, the legislation: 

• Requires HHS to report to Congress on the progress of activities related to autism and other developmental disabilities, and the health and well-being of individuals on the autism spectrum.

• Directs NIH to conduct research targeted at improving outcomes and detection for persons with autism of all ages.

• Directs HRSA to prioritize grants for developmental-behavioral pediatricians in medically-underserved areas.

• Amends sections of the Public Health Service Act (PHSA) to reflect the need for research, surveillance, education, detection, and intervention for individuals with autism spectrum disorder of all ages, not just children.

Click here to see Congressman Doyle’s statement today in support of the Autism CARES Act.

Christie and the Anti-Vaccine Movement

Philip Rucker reports at The Washington Post:

The morning after President Obama urged all parents to get their kids vaccinated against measles, New Jersey Gov. Chris Christie broke with the president and said the government must “balance” public health interests with parental choice.

Mary Pat and I have had our children vaccinated and we think that it’s an important part of being sure we protect their health and the public health,” Christie told reporters here Monday. But the likely Republican presidential candidate added: “I also understand that parents need to have some measure of choice in things as well, so that’s the balance that the government has to decide.”

Christie’s comments came after a laboratory tour at MedImmune, a biologics company that makes vaccines in Cambridge. Christie is on a three-day tour of Britain designed to promote trade with New Jersey businesses and round out his foreign policy resume ahead of a likely 2016 run for the White House.

Christie has been courting the anti-vaccine movement for a long time.  The issue is hot in New Jersey, which  has an unusually high rate of reported autism prevalence.  Representative Chris Smith (R-NJ) and Senator Bob Menendez (D-NJ) have been leaders on the issue in Congress.

\On November 3, 2009, Christian Newswire reported:

In an unprecedented and historic move, Chris Christie put pen to paper last week and made an official campaign promise to citizens of New Jersey in support of vaccination choice. He further cemented his position on live radio with Don Imus, by becoming the first gubernatorial candidate to utter the words vaccines, autism and parental choice in the same sentence. Vaccine choice supporters showed up in record numbers tonight to cast their vote for Christie.

"Tonight, vaccine choice advocates in New Jersey are proud to announce that vaccination choice is officially a voting block," says Life Health Choices Founder, Louise Kuo Habakus, who met with campaign leaders last December and kept the lines of communication open. "This election is a wake-up call to politicians nationwide. Vaccine choice belongs in the parents' house, not the Statehouse or the White House."

After receipt of the official Christie campaign promise on Friday, vaccination choice and autism advocates mobilized in force on the internet. They alerted tens of thousands of supporters, who in turn took to Facebook, Twitter, and their own support group networks to reach hundreds of thousands more. News of Christie's now famous statement spread like wildfire through the state and across the country:

"I stand by them now, and will stand with them as their governor in their fight for greater parental involvement in vaccination decisions that affect their children... Ending waste in government in order to improve care and services for these unique children and adults, as well as giving parents the choice they deserve in their children's health care decisions, will be top priorities."

HR 5756, the Training and Research for Autism Improvements Nationwide [TRAIN] Act

On Wednesday, the US House votes on the HR 5756, the Training and Research for Autism Improvements Nationwide [TRAIN] Act, by Representatives Mike Doyle (D-PA) and Chris Smith (R-NJ). Doyle and Smith are c0-chairs of the first-ever Congressional Membership Organization dedicated to autism advocacy on Capitol Hill—The Coalition for Autism Research and Education (CARE). When the House Energy & Commerce Committee approved the measure in July, Representative Doyle issued a release with background information:

Congressman Doyle and Congressman Chris Smith (NJ-4) introduced the TRAIN Act on July 15. This national autism training initiative would establish grants to provide individuals with interdisciplinary training, continuing education, technical assistance, and information in order to improve services to children and adults with autism and their families, as well as to address the existing unmet needs related to autism.

The TRAIN Act is supported by groups like Autism Speaks, the Autism Society of America, self advocates from the Autism Self-Advocacy Network, and the Association of University Centers on Disabilities (AUCD) and many other organizations.

The manager’s amendment made several agreed-upon technical changes to the text of H.R. 5756 as introduced, reflecting technical assistance from the Administration for Children and Families at the Department of Health and Human Services. These changes would make certain that University Centers of Excellence on Developmental Disabilities, also known as UCEDs, seeking grant funds under this section demonstrate that families, in addition to individuals on the autism spectrum, will participate in the planning and design of authorized activities – and that UCEDs seeking capacity-building grants to collaborate with minority-serving institutions provide services and conduct research and education. The amendment and the amended bill were both approved by voice vote.

The bill is on the suspension calendar, generally reserved for non-controversial items likely to pass by more than two-thirds.