Kevin and Avonte's Law Passes the House

The Politics of Autism discusses the problem of wandering, which is the topic of legislation before Congress.

Despite an earlier roadblock in committee, the House of Representatives yesterday passed Kevin and Avonte's Law. The vote took place under "suspension of the rules," a procedure for passing non-controversial bills.  A two-thirds vote is necessary to pass a bill under suspension.

The role call was 346-66.

Voting aye were 167 Republicans and 179 Democrats.

Voting nay were 65 Republicans and one Democrat (Donald Payne of New Jersey)./

Maria Jeffrey writes at Conservative Review:

The bill has incited passion from autism and Alzheimer’s advocacy groups, as well as those who are concerned about civil liberties and government overreach. Last week, the bill was scheduled for a House Judiciary Committee markup, but was postponed.

As Conservative Review reported at the time, “Multiple sources on the Hill with knowledge of the situation said that the hearing was cancelled after several GOP committee members voiced concerns about how the language dealt with privacy and civil liberty issues.”

After the Judiciary Committee markup was cancelled, the language of Kevin and Avonte’s Law was changed, so that the tracking devices overseen by the DOJ were less permanent and invasive than the ones originally proposed.

The language change “is still not good enough,” Robert Romano, senior editor at Americans for Limited Government, stated in a press release Wednesday: “There shouldn’t be any bill, because there shouldn’t be a program no matter how well-intentioned overseen by the Attorney General electronically tracking people in this manner.”

Nevertheless, the bill was brought up for a quick vote on Thursday, the last day of the House’s lame-duck legislative session before the new year.

A House source told Conservative Review that, as of last week, an informal whip count of the Judiciary Committee found that a majority of members on the committee were opposed to the bill. It is extremely uncommon for a bill to bypass a committee markup in this way and be brought to the floor under suspension of the rules, the source stated. The bill may be brought up in the Senate for a vote in the next 24 hours, where it is expected to pass with ease and head to President Obama’s desk for signature.

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

Today, the House of Representatives approved Kevin and Avonte’s Law (H.R. 4919), bipartisan legislation that will help protect children with developmental disabilities, such as autism, and seniors with Alzheimer’s who are prone to wandering. Authored by U.S. Rep. Chris Smith (NJ-04), H.R. 4919 provides targeted support to communities for locally-based, proactive programs to prevent wandering and locate missing children or seniors who have wandered from safe environments.

“This is an issue that hits home for me,” said Smith, founder and co-Chair of the Autism Caucus and the Alzheimer’s Disease Task Force. He referenced the successful use of the Project Lifesaver Program to safely bring home an 8-year-old boy with autism from Bergen County, New Jersey who wandered from his family in a public park on November 4th. “Sadly, just days later, a 4-year-old boy was pronounced dead after wandering from supervision and drowning in Salem County. Like the children for whom this legislation is named, these two New Jersey boys demonstrate how critical this legislation is to prevent such needless tragedy.”

Wandering is a safety concern for both seniors with Alzheimer’s and children with developmental disabilities. It is estimated that 60 percent of the 5.3 million individuals with Alzheimer’s, and 49 percent of the 1 in 68 children with autism have wandered. The results can be devastating: this legislation is named in honor of two boys with autism, Kevin Curtis Wills and Avonte Oquendo, who both wandered from safety and tragically drowned.

“The ‘Missing Americans Alert Program’ will fill a great unmet need, particularly in the autism community—since 2011, over 100 individuals with autism lost their lives after wandering from a safe environment,” said Smith. “Time and training are of the essence when individuals wander and Kevin and Avonte’s Law can help equip local law enforcement with the training and technology to bring these children home safely.”

Specifically, Smith’s legislation will reauthorize and expand a previously authorized program, the Missing Alzheimer’s Disease Patient Alert Program, to include children with a developmental disability and rename it the “Missing Americans Alert Program.”

Grants could be made to law enforcement agencies, public safety agencies, and nonprofit organizations to provide proactive educational programing to prevent wandering to families and caretakers of individuals who wander, as well as training to first responders and school personnel in order to recognize and respond to endangered missing individuals and facilitate their rescue and recovery. Additionally, this funding could also be used for voluntary, non-invasive technologies that facilitate the rescue and recovery of wanderers.

This much needed, bipartisan legislation is supported by a number of autism, Alzheimer’s and children’s groups, including Autism Speaks, Autism New Jersey, the Autism Society, the National Autism Association, the National Center for Missing & Exploited Children, SafeMinds, the National Down Syndrome Society, the Alzheimer's Association, and the Alzheimer's Foundation of America.

Trump, Clinton, Disability, Public Health

In The Politics of Autism, I discuss the issue's role in presidential campaigns.   In this campaign, a number of posts have discussed Trump's support for the discredited notion that vaccines cause autism.  He also has a bad record on disability issues more generally.

PolitiFact examines the ad showing Trump mocking a disabled journalist.

Trump tweeted about the ad on Sunday: "Clinton made a false ad about me where I was imitating a reporter GROVELING after he changed his story. I would NEVER mock disabled. Shame!" The Trump campaign did not respond to PolitiFact’s request for comment.
...
In an ad from Priorities USA Action, parents of a disabled child said Trump "mocked" a disabled reporter at a campaign rally. Trump did mimic the man’s oddly angled right hand while flailing his arms and shouting in a strange voice. Disabled people and advocates said the candidate clearly was mocking him.

Trump’s excuses for his comments are at odds with the evidence. Trump said he didn’t remember the man so he couldn’t know he was handicapped. But Kovaleski said he and Trump knew each other well because the reporter regularly covered the New York businessman for years. Archived reports support that.

Trump also talked about the reporter with familiarity as a "nice reporter" and a "poor guy" who "you gotta see."

Trump’s denials that he did not mock -- or even know -- the disabled reporter don’t add up. We rate the ad’s claim True.

David Nather reports at Stat:

Clinton “really knows what’s going on and is a policy wonk on medical research as well as health care,” said Mary Woolley, president of Research!America, a coalition of groups that promote medical research. Trump, however, has such an “in the moment” approach to medical research — almost never raising the issue unless someone asks him about it — that it will be impossible to know what he’d do until people ask him more questions, she said.

Paul Offit, the chief of the division of infectious diseases at Children’s Hospital of Philadelphia, puts the choice in more stark terms.

“I think it is fair to say that Donald Trump is a black box. He says one thing one day and the opposite the next,” Offit said. “So he certainly scares me far more than Hillary Clinton, who has generally supported public health.”

...
[Clinton] has laid out plans to boost Alzheimer’s research, increase treatment and support for people with autism, advance the fight against HIV and AIDS, andreduce opioid addiction and substance abuse.

...
Trump has also bought into theories that aren’t grounded in medical science. He has talked and tweeted, many times, about the now-disproven link between vaccines and autism. “If I were President I would push for proper vaccinations but would not allow one time massive shots that a small child cannot take — AUTISM,” he tweeted in March 2014.

...
And, of course, there was Trump’s vitamin network, a network marketing company that sold supplements on the basis of bad science.

Kevin and Avonte's Law Advances

The Politics of Autism discusses the problem of wandering, which is the topic of legislation before Congress.

A Thursday release from Senator Charles Grassley (R-IA):

The Senate Judiciary Committee today advanced legislation to help families locate missing loved ones with Alzheimer's disease, autism or other related conditions. The legislation, titled Kevin and Avonte's Law, reauthorizes the expired Missing Alzheimer's Disease Patient Alert Program, and includes additional provisions to support people with autism. Senator Charles Schumer of New York joined Senate Judiciary Committee Chairman Chuck Grassley in crafting the measure, which cleared the committee by a vote of 15-5.

Kevin and Avonte's Law is named in honor of two boys with autism who died after their conditions caused them to wander. Nine year-old Kevin Curtis Wills, jumped into Iowa's Raccoon River near a park and tragically drowned in 2008. Avonte Oquendo, 14, wandered away from his school and drowned in New York City's East River in 2014.

'Stories of loved ones who wander away from safety because of a medical condition are all too common. Thankfully, with the help of trained first responders and a vigilant community, many of these stories can have a happy ending. Kevin and Avonte's Law uses proven community alert systems and other technology to help locate people with Alzheimer's Disease or other forms of dementia as well as children with autism spectrum disorders who may be prone to wander away safety. It also helps to equip first responders and other community officials with the training necessary to better prevent and respond to these cases. This bill is an important way to honor the lives lost after wandering away, and to prevent future tragedies. I thank Sen. Schumer for working with me on this bill, and my colleagues on the Senate Judiciary Committee for moving it forward,' Grassley said.

Iowa has the fifth highest Alzheimer's death rate in America, according to the Alzheimer's Association, with 1,252 deaths in 2013. About 63,000 Iowans are living with the disease. More than 8,000 Iowa children have been diagnosed with autism spectrum disorders, according to a state coalition, and its prevalence is on the rise.

The bill reauthorizes existing programs designed to assist in locating Alzheimer 's disease and dementia patients, and it adds new support for people with autism. It allows Justice Department grants to be used by state and local law enforcement agencies and nonprofits for education and training programs with the goal of proactively preventing individuals with these conditions from wandering off. The bill also provides access to resources for state and local agencies and organizations to assist in locating these individuals who become separated from their caregivers. The grants will facilitate the development of training and emergency protocols for school personnel, supply first responders with additional information and resources, and make local tracking technology programs available for individuals who may wander from safety because of their condition. Grant funding may also be used to establish or enhance notification and communications systems for the recovery of missing children with autism.

Kevin and Avonte's Law is also cosponsored by senators Thom Tillis of North Carolina, Dick Durbin of Illinois, Christopher Coons of Delaware and Amy Klobuchar of Minnesota.

For more information on Kevin and Avonte's Law, view the bill text and summary.

- See more at: http://www.publicnow.com/view/F7295130629E4C638AAFDC6000E4D2C2E4D69EA4?2016-04-15-05:00:41+01:00-xxx237#sthash.LRjZ3D02.dpuf

More on Kevin and Avonte's Law

The Politics of Autism discusses the problem of wandering, which is the topic of legislation before Congress.

At Disability Scoop, Michelle Diament writes:

Under the bill, the Justice Department would distribute grants to state and local law enforcement agencies to pay for training, tracking devices and other efforts to help keep individuals with disabilities or Alzheimer’s disease safe.

The senators are seeking $2 million for the combined program. That’s an increase over the $750,000 in federal funds allocated to address wandering among those with Alzheimer’s in 2015, but far less than the $10 million that Schumer initially wanted.

Securing Grassley’s support, however, is seen as key because the Republican chairs the Senate judiciary committee, which would hear the bill.

“We must move rapidly to implement the potentially life-saving precautions like voluntary tracking devices that will protect our precious children,” Schumer said in a statement to Disability Scoop. “This technology will allow parents of all children with autism, no matter their means, to use the benefits of a high-tech solution to an age-old problem.”

Kevin and Avonte's Law

The Politics of Autism discusses the problem of wandering, which is the topic of legislation before Congress.

A Wednesday release from Senator Charles Grassley (R-IA):

Senate Judiciary Committee Chairman Chuck Grassley yesterday evening introduced legislation with Senator Chuck Schumer of New York to help families locate missing loved ones who have Alzheimer’s disease, autism or other related conditions that may cause them to wander away from their caregivers. The legislation, titled Kevin and Avonte’s Law, will reauthorize the expired Missing Alzheimer’s Disease Patient Alert Program, and include new provisions to support people with autism.

“We’ve all seen the heartbreaking stories of families frantically trying to locate a missing loved one whose condition caused him or her to wander off. We’ve also seen benefits of the Amber Alert program and other notification systems to locate missing children and bring relief to families through community assistance. Kevin and Avonte’s Law will use similar concepts and other technology to help locate people with Alzheimer’s Disease or other forms of dementia as well as children with autism spectrum disorders who may be prone to wander away from their families or caregivers. It also will make resources available to equip first responders and other community officials with the training necessary to better prevent and respond to these cases. With better information sharing, communities can play a central role in reuniting these children with their families,” Grassley said.

Kevin and Avonte’s Law is named in honor of two boys with autism who died after their conditions caused them to wander. Nine year-old Kevin Curtis Wills, jumped into Iowa’s Raccoon River near a park and tragically drowned in 2008. Avonte Oquendo, 14, wandered away from his school and drowned in New York City’s East River in 2014.

Iowa has the fifth highest Alzheimer’s death rate in America, according to the Alzheimer’s Association, with 1,252 deaths in 2013. About 63,000 Iowans are living with the disease. More than 8,000 Iowa children have been diagnosed with autism spectrum disorders, according to a state coalition, and its prevalence is on the rise.

The bill reauthorizes existing programs designed to assist in locating Alzheimer’s Disease and dementia patients, and it adds new support for people with autism. It allows Justice Department grants to be used by state and local law enforcement agencies and nonprofits for education and training programs with the goal of proactively preventing individuals with these conditions from wandering off. The bill also provides access to resources for state and local agencies and organizations to assist in locating these individuals who become separated from their caregivers. The grants will facilitate the development of training and emergency protocols for school personnel, supply first responders with additional information and resources, and make local tracking technology programs available for individuals who may wander from safety because of their condition. Grant funding may also be used to establish or enhance notification and communications systems for the recovery of missing children with autism.

Kevin and Avonte’s Law is also cosponsored by Thom Tillis of North Carolina.

... Text of the bill is available here.

Autism, Alzheimer's, and Clinton

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.

At The Huffington Post, Craig Snyder writes of the Clinton autism plan:

This language signifies a necessary and significant policy direction change on autism research, away from the genetic and psychiatric approaches that have consumed nearly all federal dollars on autism causation research so far.

It seems to us, however, that Secretary Clinton's previously-announced platform to address Alzheimer's would be equally appropriate for addressing autism, if not more so, given the chronic, virtually lifelong nature of autism, autism's higher annual cost ($268 billion vs $200 billion for Alzheimer's), and autism's increased mortality rate. The Clinton Alzheimer's Plan, found here: https://www.hillaryclinton.com/briefing/factsheets/2015/12/22/an-end-to-alzheimers-disease commits $2 billion dollars each year for research "preventing and effectively treating Alzheimer's by 2025" and "invests the needed resources, organizes a broad national effort, and inspires leaders in the public, nonprofit, and private sectors to develop effective interventions to prevent and effectively treat Alzheimer's and related dementias".

 In The Politics of Autism, I write:

Two demographic trends will influence autism politics in the coming decades. First, the identified autistic population will get bigger, particularly in the adult range. Service providers refer to this coming change as a “tsunami,” after a large ocean wave that is barely visible when it moves over deep water but packs great power when it hits land. Second, the general population will be getting older just as the autism tsunami arrives, complicating the policy response.

New Head of Autism Speaks

The Politics of Autism includes a discussion of major interest groups such as Autism Speaks.

From Autism Speaks:

Autism Speaks, the world’s leading autism science and advocacy organization, today announced that Angela Timashenka Geiger has been named president and CEO of the organization. The appointment came after a unanimous vote by the Autism Speaks Board of Directors and is effective February 2016.

...

Geiger has significant experience in strategic marketing, program development, revenue development, and field support for nonprofits. She will join the organization from the Alzheimer’s Association where she most recently served as chief strategy officer. As a member of the Alzheimer’s Association senior management team, Geiger worked day-to-day across all divisions and with the chapters to coordinate and execute strategy and accelerate organizational growth. She has had accountability for more than $280 million in annual fundraising, programs and services reaching over three million people per year, as well as branding and marketing, corporate initiatives and diversity and inclusion. She has successfully led Association efforts to develop and expand programmatic offerings, marketing and fundraising to increase concern and awareness, and improve the lives of those affected.
...

Prior to joining the Alzheimer’s Association, Geiger spent eight years at the American Cancer Society in a variety of leadership roles. During her tenure, she developed and implemented a business-to-business sales and market strategy to increase mission reach and revenue. She also worked for the American Lung Association of Western Pennsylvania and for higher education institutions.

She has her B.A. and MBA from the University of Pittsburgh and has contributed to a variety of conferences and publications.

There are many differences between autism and Alzheimer's, but both are brain disorders in need of serious research.  Both lead to wandering. And as I write in the book, there is at least some potential for resource conflict:

 In the future, therefore, a lot of autistic adults may still need a lot of help.  And that help could be more expensive, especially for more severely impaired people who require assistance with daily activities.  The huge baby boom generation is now entering old age, so the number of Alzheimer’s patients will soar.  Competition for suitable workers could drive up the costs of care.   And those costs will rise just as overall government budgets are getting tighter.  The aging of baby boom generation will mean fewer workers paying taxes and more seniors drawing benefits, simultaneously squeezing revenues and expenditures at all levels of government.   “People assume the state will be there to help with their child,” financial planner John Nadworny says, “but that’s a really risky bet.”