Today, the U.S. House of Representatives passed a package of annual spending bills that includes several important priorities that Autism Speaks has been fighting to advance. In the bill, the House specifically calls on the National Institutes of Health (NIH) to increase investment in research focused on addressing health equity and racial/ethnic disparities in the autism community, challenges faced by autistic individuals across the lifespan and co-occurring medical conditions experienced by autistic individuals. It also calls for more investment in research focused on the development of evidenced-based services, new screening tools and interventions.
The overall investment in autism research still lags behind the recommendations of the Interagency Autism Coordinating Committee (IACC). This House-passed language, which accompanies a large increase in the NIH budget, provides a clear message to the NIH that they should invest in research according to the IACC budget recommendations and address the key gaps in research that have been identified.
In addition, for the first time in a decade, the House increased funding for autism-related activities at the Centers for Disease Control and Prevention (CDC), thanks to a bipartisan $10 million amendment that was offered by Autism Caucus Co-Chairs Reps. Mike Doyle and Chris Smith. This funding will allow CDC to expand their work in understanding the prevalence of autism, racial/ethnic disparities, access to services and transition to adulthood. The bill also includes a $4 million increase for Autism and Developmental Disorders activities at the Health Resources and Services Administration (HRSA), which will provide additional resources to the Leadership Education and Neurodevelopmental and Related Disabilities (LEND) program. The LEND program provides vital training to interdisciplinary professionals to screen, diagnose and provide evidence-based interventions for autistic individuals. Additional important provisions included in the bill are detailed in the section below.
The inclusion of these priorities reflects the momentum that has been building in Congress to address these important issues, which was illustrated by a historic number of House members signing on to a letter in support of autism research funding in April.
The Senate has not commenced the annual spending process to this point, so the House passage of this bill represents the first step in the process. Autism Speaks will continue to advocate for these key priorities as Congress moves forward with spending decisions.
Highlights from H.R. 4502 - Labor, Health and Human Services, Education, Agriculture, Rural Development, Energy and Water Development, Financial Services and General Government, Interior, Environment, Military Construction, Veterans Affairs, Transportation, and Housing and Urban Development Appropriations Act, 2022:
- Addressing disparities, lifespan issues and co-occurring conditions: As mentioned above, along with increasing overall funding for the National Institutes of Health (NIH), the bill emphasizes the importance of the NIH investing in autism research in accordance with the recommendations of the Interagency Autism Coordinating Committee and to address key areas such as racial/ethnic disparities, lifespan issues and co-occurring health conditions. This language is located on page 138 of the House Appropriations Committee report on the bill.
- $33.1 million for the autism-related activities at the CDC (a $10 million increase): A $10 million increase to the Centers for Disease Control and Prevention’s autism-related activities was secured through an amendment offered by Autism Caucus Co-Chairs, Reps. Mike Doyle and Chris Smith. This funding will allow the CDC to expand the number of sites in the current ADDM Network to help strengthen work in understanding the prevalence of autism, racial/ethnic disparities, access to services and transition to adulthood, which help inform policy decisions.
- $57.3 mil for Autism and Developmental Disorders activities at HRSA (a $4 million increase): In addition to funding enhancing the efforts of the LEND program, as mentioned above, the Health Resource and Services Administration’s efforts include funding for research and programs to improve the health and well-being of autistic individuals and others with developmental disabilities. They also advance best practices for early identification and treatment of autism and related developmental disabilities.
- New HHS study: The bill requires a new study by the Secretary of the Department of Health and Human Services “to identify the supportive services that are most beneficial to improved outcomes for autism patients, review existing coverage policies for these services, and provide a report on its interim findings.”
- New CDC programming: The bill creates a new drowning prevention program at the CDC, with a direction to create specific initiatives within that program targeted to prevent autistic children from drowning.
- $15.5 billion for IDEA grants: This funding is for the Individuals with Disabilities Education Act (IDEA) Part B grants to states. It represents a $2.6 billion increase over FY2020 funding levels.
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Saturday, July 31, 2021
Friday, July 30, 2021
Dr. Wendy Ross, a pediatrician, was honored as a CNN Hero in 2014 for her work advocating for people with intellectual or developmental disabilities. Now, as director of Jefferson Health's Center for Autism and Neurodiversity in Philadelphia, she's making it easier for them to get vaccinated.
"A lot of them get easily overwhelmed in crowds. They have a lot of sensory issues, they tend to be very anxious in new experiences," Ross said. "We reduce that stress by having a very low-stimulus environment ... We just sort of slow down the pace and make it more relaxed."
For those who are neurodiverse, Ross' sensory-friendly clinic is a welcome refuge. There's more space between appointments, which means less waiting in line, and the office has special seating, fidgets and even sunglasses available to help people stay calm. Trained vaccinators have strategies to help the process go smoothly.
But these accommodations aren't just about comfort. Ross conducted a study that showed that people with intellectual disabilities face a greater risk of Covid-19.
"What we discovered was that having an intellectual disability was the number one risk factor for getting Covid and the second risk factor -- only below age -- for dying from Covid," she said. "This is an invisible population and our goal is to make them visible and cared for adequately."
Ross has resources available on her office's website to help neurodiverse individuals prepare for vaccinations and other Covid-related issues. She also asked a focus group of young adults with intellectual disabilities what people vaccinating them should know, and she later turned this into a video PSA with the Special Olympics.
Dawn Powell had concerns about getting her 16-year-old son Anthony vaccinated, because in addition to having autism he had a lot of anxiety about getting a shot. Ross and her staff had to try a few times before they were successful, but Powell was grateful for their efforts.
"I didn't think it was going to happen ... but they did it," she said. "As a mom, it means everything ... When we go to regular clinics, they kind of give up on the first try."
Ross says that a number of people have told her they would not have been able to get their children vaccinated anywhere else.
"Getting the vaccine to this population absolutely is saving lives," she said. "I just feel that everyone matters and has value and that everyone should be included."
Thursday, July 29, 2021
For the first time in its history, the Israeli Defence Forces opened its doors Wednesday for recruits on the autistic spectrum.
Fifty-three high-functioning Israelis joined the military following months of preparations that included working with experts, redesigning shoes and setting up tailor-made mentoring systems.
Having only been able to serve in the military's volunteer programs thus far, they no longer have to limit their service applications.
Besides providing these young people with opportunities that were denied to them in the past, the IDF also believes their skills would be an asset to the military in terms of cyber protection, quality assurance, system development, and other disciplines.
Seventy more autistic Israelis are expected to join the IDF in December, another 350 next year, and hopefully, another 500 annually from then on.
Wednesday, July 28, 2021
An internet-savvy entrepreneur who employs dozens, Dr. Mercola has published over 600 articles on Facebook that cast doubt on Covid-19 vaccines since the pandemic began, reaching a far larger audience than other vaccine skeptics, an analysis by The New York Times found. His claims have been widely echoed on Twitter, Instagram and YouTube.
The activity has earned Dr. Mercola, a natural health proponent with an Everyman demeanor, the dubious distinction of the top spot in the “Disinformation Dozen,” a list of 12 people responsible for sharing 65 percent of all anti-vaccine messaging on social media, said the nonprofit Center for Countering Digital Hate. Others on the list include Robert F. Kennedy Jr., a longtime anti-vaccine activist, and Erin Elizabeth, the founder of the website Health Nut News, who is also Dr. Mercola’s girlfriend.
“Mercola is the pioneer of the anti-vaccine movement,” said Kolina Koltai, a researcher at the University of Washington who studies online conspiracy theories. “He’s a master of capitalizing on periods of uncertainty, like the pandemic, to grow his movement.”
Some high-profile media figures have promoted skepticism of the vaccines, notably Tucker Carlson and Laura Ingraham of Fox News, though other Fox personalities have urged viewers to get the shots. Now, Dr. Mercola and others in the “Disinformation Dozen” are in the spotlight as vaccinations in the United States slow, just as the highly infectious Delta variant has fueled a resurgence in coronavirus cases. More than 97 percent of people hospitalized for Covid-19 are unvaccinated, according to the Centers for Disease Control and Prevention.
For many years, Dr. Mercola and other staff members saw patients at his clinic, which was called the Optimal Wellness Center. In 1999, Mercola announced that about one third of his new patients were autistic and that he had treated about 60 such children with secretin, a hormone he said “appeared to be a major breakthrough.”  After it was well settled that secretin is ineffective against autism , Mercola’s Web site still said it would work if a child complied with his recommended diet strategies .Mercola JM. Milk linked to autism, schizophrenia. Optimal Wellness Center Web site, March 21, 1999.
Tuesday, July 27, 2021
I was enormously proud to be a co-sponsor to the ADA as Pat Leahy was, as well, if I’m not mistaken, as a member of the United States Senate.And I’m proud to be here today, as President, alongside so many fearless champions who represent the ongoing legacy of this law, from the foundations to its future.
Thirty-one years ago, after its passage, many Americans have never lived in a world without the ADA. Generations have grown up not knowing a time before it existed.
But many of us can still recall an America where a person with a disability was denied service in restaurants and grocery stores, and could be; where a person using a wheelchair couldn’t ride on a train or take a bus to work or to school; where an employer could refuse to hire you because of a disability. An America that wasn’t built for all Americans.
Then we passed the ADA and made a commitment to build a nation for all of us. All of us. And we moved America closer to fulfilling that promise of liberty and justice, and maybe most importantly, dignity and equality for all.
You know, and perhaps most importantly, we did it together. This was a Democratic bill signed by a Republican president. A product of passion and compassion, not partisanship. Progress that wasn’t political, but personal, to millions of families.
I’ll never forget the moment the ADA passed. And you may remember it, Pat. Standing on the floor of the United States Senate, and Tom Harkin saw the recognition — he rose. And the first time — first time in the history that I’m aware of — in the United States Senate, he stood up and he signed in a speech to his brother. Tom wasn’t just sending a message to millions of deaf and hard-of-hearing folks; he was speaking to his brother, Frank. It was personal to him.
It was personal to Bob Dole, as well, who lost the use of his right arm in a heroic effort during World War Two; who laid out in a hospital for almost three years — his injury listed, and they also lasted an entire lifetime.
But like so many Americans, he turned his disability, his apparent limitation, into greater purpose and will. He made — he made the rights of disabled Americans a lifelong cause.
And for more than 60 million Americans living with disabilities, the ADA is so much more than a law; it’s a source of opportunity, participation, independent living, and respect and dignity, the bulwark against discrimination, and a path to independence.
And for our nation, the ADA is more than a law as well; it’s testament to our character as a people, our character as Americans. It’s a triumph of American values.
But, of course, this law didn’t bring an end to the work we need to do. Today, too many Americans still face barriers to freedom and equality. But thanks to this movement that spans all races, beliefs, backgrounds, and generations, we’re once again making progress together.
Monday, July 26, 2021
These days, Christy Carpenter finds strength in her family and faith. But on some days, one question keeps ringing in her head: “Why?”
After weeks of battling through oxygen treatments, her 28-year-old son died in the hospital two months after being diagnosed with covid-19.
Now in Carpenter’s Alabama home, the room belonging to Curt, her “beautiful baby boy” and firstborn, remains empty — a painful reminder of a life that could have been saved if the family had decided to get vaccinated, she said.
“It took watching my son die and me suffering the effects of covid for us to realize we need the vaccine,” the mother said. “We did not get vaccinated when we had the opportunity and regret that so much now.”
Curt Carpenter was a young and otherwise healthy man. While at home, his mother said, he would spoil her with the “best hugs” and a daily dosage of kindness. Curt was autistic, but Christy Carpenter said he “lived life to the fullest” and had a passion for all things Pokémon, trains, video games and frogs.
His last uttered phrase is still etched in Christy Carpenter’s mind: “This is not a hoax, this is real,” Curt said, according to his mother.
His mother said Curt Carpenter at first believed that the coronavirus was a hoax. The whole family was hesitant to get vaccinated when the shots became available.
“It took years to create other vaccines, and the coronavirus vaccine was created very quickly,” Christy Carpenter said. “That made us very nervous.”
Sunday, July 25, 2021
At Health Services Research, Lindsay Lawer Shea, Kaitlin H. Koffer Miller, Kate Verstreate, Sha Tao, and David Mandell have an article titled "States' use of Medicaid to Needs of Autistic Individuals."
To assess the use of Medicaid programs, including waivers, to address the needs of aging autistic individuals.
We gathered data on Medicaid programs in place between 2004 and 2015 for 50 states and the District of Columbia from the Centers for Medicare and Medicaid Services website, by contacting state Medicaid administrators and advocacy groups, and by reviewing the Medicaid Analytic eXtract Waiver Crosswalk.
This retrospective analysis classified each Medicaid program and documented state changes over time in eligibility criteria: those serving autism spectrum disorder only, autism spectrum disorder or intellectual disability, and intellectual disability only.
Data collection/extraction methods
We captured age and diagnosis eligibility criteria for Medicaid programs serving any of the three target groups.
A total of 269 Medicaid programs met our criteria and most programs (51%) were 1915(c) waivers. The number of autism-specific 1915(c) waivers grew more than fivefold during the study period, outpacing increases in waivers serving individuals with intellectual disability.
States varied in their use of Medicaid to address the needs of the aging autism population. Further study of characteristics of states that changed their Medicaid programs, and of the health care use and outcomes associated with these changes, are needed to identify opportunities to replicate effective approaches to meeting the needs of this population.
What is already known on this topic
The number of individuals diagnosed with autism spectrum disorder (ASD) is increasing. Most will need services and supports throughout their lives.
Medicaid 1915(c) waivers are a policy mechanism that states frequently use to provide health care insurance to specific populations for targeted services.
What this study adds
States use a variety of Medicaid programs to enroll and serve individuals with ASD; the most common mechanism being the 1915(c) waiver authority.
Twenty-six states changed their 1915(c) waiver programs to increase options for individuals with ASD.
Identifying state policy changes is the first step in comparing outcomes associated with varying approaches.
Saturday, July 24, 2021
Half of COVID vaccine rejectors think that vaccines in general cause autism. Even when they take the vaccine, there could be a problem.
Brett Kelman at the Nashville Tennessean:
The Tennessee state government will resume all forms of vaccine outreach, with the narrow exception of social media posts aimed specifically at children, after halting many forms of advocacy this month in response to conservative pressure, the state's top health official said Friday.
Tennessee also faces a new “surge” of coronavirus that shows no signs of slowing, and deaths from the virus are expected to spike in coming weeks, the health official warned.
Health Commissioner Dr. Lisa Piercey said the Tennessee Department of Health will restart outreach efforts recommending vaccines for children and once again hold events on school property offering the COVID-19 vaccine, including some next week. Department staff are no longer instructed to strip the agency logo from public-facing vaccine information, she said.
“Nothing has been stopped permanently,” Piercey said during a press briefing. “We put a pause on many things, and then we have resumed all of those."
Piercey said her agency will also, in rare circumstances, provide the COVID-19 vaccine to minors without the permission of their parents. This statement is a contradiction to an announcement made this week by conservative lawmakers, who said Piercey agreed in a private meeting to stop this practice.
The Tennessee Department of Health drew nationwide attention this month after exclusive reporting by The Tennessean revealed the agency had dramatically scaled back efforts to promote the coronavirus vaccine to minors. The changes came after conservative state lawmakers lambasted the agency for gently recommending the vaccine to minors and proposed dissolving the entire agency to make the outreach stop.
A conservative radio host in Tennessee who urged listeners not to get vaccinated against Covid-19 has changed track and called on listeners to get the shot, after contracting the virus and ending up in hospital in “very serious condition”.
In a statement posted to social media, Phil Valentine’s family detailed his condition and said: “Please continue to pray for his recovery and PLEASE GO GET VACCINATED!”
The family also said the WTN host had “never been an ‘anti-vaxer’”, but “regrets not being more vehemently ‘pro-vaccine’ and looks forward to being able to more vigorously advocate that position as soon as he is back on the air, which we all hope will be soon”.
Valentine, 61, did, however, play down the need for vaccines and perform a song called Vaxman, to the tune of Taxman, George Harrison’s Beatles number against government taxation.
“Let me tell you how it will be,” he sang, “and I don’t care if you agree, ‘Cause I’m the Vaxman, yeah I’m the Vaxman. If you don’t like me coming round, be thankful I don’t hold you down.”
There’s a lot to see and do at the Saratoga County Fair, but that usually comes with big crowds, flashing lights, and lots of noise. For people with epilepsy, migraines, or on the autism spectrum, sensory overload can take away from the fun.For the fourth time, the fair held Think Differently Day, making small changes to the fair for a few hours so all can enjoy. Patrons who stopped by between 9 a.m. and noon could explore art exhibits, animal exhibits, a horse show, and enjoy snacks. At 11 a.m., the carnival and rides opened early for a sensory-sensitive morning.“We wanted to create a calmer environment, so that everybody can come enjoy the fair, regardless of your abilities,” said Assemblywoman Mary Beth Walsh.Walsh, who has a son on the autism spectrum, pitched the idea for Think Differently Day at the fair.“People will come into the fair, and they’ll be greeted by the 4-H ambassadors, who will talk to a young person with autism, for example,” Walsh explained. “[They will] find out what they’re interested in: Do they love cows? Do they love horses? Sometimes they have really intense interests, so they’ll take the child over to that area so that they can enjoy the animals.”
Friday, July 23, 2021
Half of COVID vaccine rejectors think that vaccines in general cause autism. Even when they take the vaccine, there could be a problem.
Controversy has swirled around the measles, mumps, rubella (MMR) vaccine since an unfounded and discredited report first linked it with autism. Given these associations, the reception of the COVID-19 vaccine is important to consider.
Instead of the decades between their own MMR or polio shot and their children receiving the same vaccine, parents and children may get a COVID-19 vaccine within weeks or months of each other. With parents now receiving their first or second dose of the vaccine, will their hesitancy in regards to their children diminish?
One might expect that parents who sign up for their own two doses will make the same choices for their children. However, a report that has not yet been peer reviewed from the COVID States Project — a 50-state survey of COVID-19 in the U.S. — observed that 26 per cent of parents polled indicated they may choose vaccination for themselves but not for their children.
There are plausible reasons for this. Respondents may believe that children “don’t get COVID” because cases have been less common and less severe in young children than adults. They may have read misinformation about vaccines causing infertility, or they may consider adult immune systems more robust than children’s.
Parents may be willing to subject themselves but not their children to possible adverse effects. They may hesitate if the vaccine designated for their child differs from the kind they received.
Thursday, July 22, 2021
Some anti-vaccination groups on Facebook are changing their names to euphemisms like “Dance Party” or “Dinner Party,” and using code words to fit those themes in order to skirt bans from Facebook, as the company attempts to crack down on misinformation about Covid-19 vaccines.
The groups, which are largely private and unsearchable but retain large user bases accrued during the years Facebook permitted anti-vaccination content, also swap out language to fit the new themes and provide code legends, according to screenshots provided to NBC News by multiple members of the groups.
One major “dance party” group has more than 40,000 followers and has stopped allowing new users amid public scrutiny. The backup group for “Dance Party,” known as “Dinner Party” and created by the same moderators, has more than 20,000 followers.
Other anti-vaccine influencers on Instagram use similar language swaps, such as referring to vaccinated people as “swimmers” and the act of vaccination as joining a “swim club.”
A Facebook spokesperson declined to comment but pointed NBC News to the company's efforts to drive users to authoritative sources on Covid-19 vaccines.
The ban-evasion maneuvers by anti-vaccination groups on Facebook and Instagram are ratcheting up as the White House has increased pressure on the social media platforms to do more to contain vaccine misinformation and disinformation.
Wednesday, July 21, 2021
IDEA identifies specific technical assistance or enforcement actions that the Department must take under specific circumstances for States that are not determined to “meet requirements.” If a State “needs assistance” for two consecutive years, the Department must take one or more enforcement actions, including, among others, requiring the State to access technical assistance, designating the State as a high-risk grantee, or directing the use of State set-aside funds to the area(s) where the State needs assistance. If a State “needs intervention” for three consecutive years, the Department must take one or more enforcement actions, including among others, requiring a corrective action plan or compliance agreement, or withholding further payments to the State. Any time a State “needs substantial intervention” the Department must take immediate enforcement action, such as withholding funds or referring the matter to the Department’s inspector general or to the Department of Justice
Following is a list of each State’s performance in meeting the requirements of IDEA Part B, which serves students with disabilities, ages 3 through 21:
MEETS REQUIREMENTS Connecticut Florida Illinois Indiana Kansas Kentucky Maine Massachusetts Minnesota Missouri Nebraska New Hampshire New Jersey North Dakota Oklahoma Pennsylvania Republic of the Marshall Islands South Dakota Tennessee Utah Virginia Wisconsin Wyoming
NEEDS ASSISTANCE (one year) Arkansas Bureau of Indian Education Georgia North Carolina New York Palau Virgin Islands Vermont West Virginia
NEEDS ASSISTANCE (two or more consecutive years) Alabama Alaska American Samoa Arizona California Colorado Commonwealth of Northern Mariana Islands Delaware District of Columbia Federated States of Micronesia Guam Hawaii Iowa Idaho Louisiana Maryland Michigan Mississippi Montana New Mexico Nevada Ohio Oregon Puerto Rico Rhode Island South Carolina Texas Washington
Tuesday, July 20, 2021
BRIAN WILLIAMS: And doctor, just take for our audience who may not be familiar with you. Take a brief moment here at the top and tell the good people watching how and why it is in your life you have become so familiar, let`s say with the anti-vaxx crowd.
DR. PETER HOTEZ, VACCINE SCIENTIST: Yes, I wish it were for good reasons, Brian, thanks for asking. You know, I`m a vaccine scientist and pediatrician and devoted my life to developing vaccines mostly for poverty related diseases to gotten Coronavirus vaccines about 10 years ago, but I`m also the parent of four adult -- four adult kids including Rachel who has autism and intellectual disability.
And a few years ago I wrote a book called "Vaccines Did Not Cause Rachel`s Autism" to debunk the fake assertions from the anti-vaccine lobby claiming that there`s a link that vaccines cause autism explaining the massive evidence showing there`s no link and the lack of plausibility what we know about the genetics of autism. And unfortunately, that may be public enemy number one with the anti-vaccine groups. And one prominent anti vaccine activist caused me the OG villain, which I had to look up, it means the original gangster villain. So you have the original gangster villain on tonight, Brian.
WILLIAMS: Well, we`re proud of it. And for you, this must be an incredible experience. Because I`m guessing there is a set anti-vaxx playbook, which you`ve lived long enough to see employed in the autism sphere. And now you`ve lived long enough to see it in your other life`s work, and that is suppressing active disease like this.
HOTEZ: Yes, that`s right. So what happened with the anti-vaccine movement is, you know, I like to think maybe in part because I was helped to fuse a little bit the links and between vaccines and autism, and I think to reenergize about six, seven years ago, they -- to reenergize they politicize. They linked themselves on to political extremism on the far right. Initially, the Republican Tea Party organizations, political action committee started forming in Texas and Oklahoma, where I am and now you see it play out nightly, I`m the conservative news outlets.
And you if you listen to the CPAC conference a couple of weeks ago, the horror show that that unfolded there from very conservative members of Congress, discrediting vaccines and claiming it`s nothing more than a political instrument of control. And this is why we`re in this terrible, terrible situation right now, where we have whole regions of the country, not just outbreak areas, but entire regions of the South Central U.S., in the southeastern United States, where people are not getting vaccinated out of defiance.
And we`re seeing this massive surge, all predicted and predictable when you have that combination of delta and low vaccination rates. So it`s totally heartbreaking because all of this could have been prevented.
Monday, July 19, 2021
The skepticism about the threats posed by the coronavirus is clear among vaccine rejectors. While more than one in four of those fully vaccinated believe the dangers of COVID-19 were exaggerated for political reasons, three times as many vaccine rejectors say that is the case. Since most in this group (83%) have little or no worry about their risks of contracting COVID-19 (with a majority not worried at all), the belief that its dangers have been exaggerated is not surprising. Less than one in ten of the vaccine rejectors trust medical advice from Dr. Anthony Fauci, and only one in five trusts the Centers for Disease Control.
Those who reject vaccinations believe two negative theories about the effects of COVID-19 vaccines: half think it is likely that vaccines in general cause autism and that this vaccine in particular is being used by the government to microchip the population. Most Americans reject these theories, but only minorities of those who oppose their vaccinations do. Nearly one in three say they aren’t sure what to believe.