Feds Deport Autism Dad

In The Politics of Autism, I explain how the issue connects with so many other issues.  Immigration is an example.

Anna Conkey and Wendy Fry report at NBC7 San Diego:

Federal authorities deported a Carlsbad man Thursday, despite local protests and support for his continued residence in the U.S 

Gaston Cazares was deported by U.S. Immigration and Customs Enforcement officials under the president’s new administration's policies. 

Cazares moved to San Diego illegally when he was 17 and has been in the area for nearly 30 years. Cazares’ wife of 22 years, their teenage daughter and their son with autism now remain in Carlsbad without him. 

Cazares said the experience has been a nightmare. He is concerned for his family and how he will find a job to support them in Tijuana. 

He said his son has been “inconsolable” and does not even fully understand the situation, only that they cannot be together....
An activist group in San Diego has set up a YouCaring crowdfunding page for the Cazares family.

Unproven Treatments

In The Politics of Autism, I write:

The conventional wisdom is that any kind of treatment is likely to be less effective as the child gets older, so parents of autistic children usually believe that they are working against the clock. They will not be satisfied with the ambiguities surrounding ABA, nor will they want to wait for some future research finding that might slightly increase its effectiveness. They want results now. Because there are no scientifically-validated drugs for the core symptoms of autism, they look outside the boundaries of mainstream medicine and FDA approval. Studies have found that anywhere from 28 to 54 percent of autistic children receive “complementary and alternative medicine” (CAM), and these numbers probably understate CAM usage

Mark Wheeler writes at UCLA:

Dr. Shafali Jeste knows well the desperation of a parent seeking a cure for their child with autism spectrum disorder. As a clinician who both researches the causes of the disorder and treats children with autism, Jeste, UCLA associate professor of psychiatry, neurology and pediatrics and a lead investigator in the UCLA Center for Autism Research and Treatment, understands why many parents will try anything that sounds reasonable. A change to a gluten- and casein-free diet to reduce symptoms. Mega-vitamins for the same. Medical marijuana to calm. Melatonin to sleep. Omega-3 fatty acids for hyperactivity. Delaying or refusing vaccinations. All done, usually, in addition to the standard medications that are prescribed to children on the spectrum, including Ritalin, Adderall or Risperdal.

...

“The short answer is there simply isn’t enough solid scientific evidence to say definitely one way or the other whether most of the alternative treatments help or harm,” Jeste said.

...
The autism theory most upsetting to Jeste and some other researchers is the idea of a link between childhood vaccines and autism. That now-debunked theory started in 1998, when a then-doctor named Andrew Wakefield published a study in the British journal the Lancet purporting to show a link between vaccines and autism. The study was later identified as fraudulent, was retracted by the medical journal, and his medical license was revoked.

“I think one reason this myth persists is that many symptoms of autism begin to emerge right around the same time that vaccines are given to children,” Jeste said

Behavioral interventions currently hold more hope.

One example of a behavioral therapy is one that focuses on the social communication deficits in young children with autism. It’s called “Jasper,” short for Joint Attention, Symbolic Play, Engagement and Regulation, and was developed by Jeste’s colleague, Connie Kasari.

While it’s thought that environmental factors may play some role — Jeste pointed out that the age of the parents, maternal drug use, extreme premature birth, in utero hormonal environment — her research and that of others shows that genetic variations are responsible for the majority of all diagnosed cases.

In her research Jeste searches for biomarkers that would identify autism in the youngest of patients, even babies. She is part of a nationwide, multi-center study examining preschool and school-aged children with autism spectrum disorders to identify biomarkers that could help physicians diagnose and track the disease as well as assess treatments in autism patients.

Drowning

The Politics of Autism discusses the dangers facing autistic people, including wandering

Leah Samuels at STAT:

Drowning is the most common fatal injury among children with autism, researchers found. Children with autism age 14 and younger are 160 times as likely to die from drowning as the general pediatric population, with drowning risk peaking from age 5 to 7.
...
The good news is that research shows children with autism can learn to be safe around water. A study published in September in the Journal of Autism and Developmental Disorders offers preliminary evidence that even children with severe autism can learn techniques to avoid drowning.
...
Advocacy organizations, community centers, and schools are creating water safety classes for children with autism. Pathfinders for Autism offers a tip sheet for swim instructors who may encounter students with autism. Autism Speaks provides swim classes for children with autism and financial need with swim lesson scholarships, awarding them to 134 organizations in 31 states since 2014.

Study: It's Genetics

In The Politics of Autism, I discuss various ideas about what causes the condition.

A JAMA release:

Reanalysis of data from a previous study on the familial risk of autism spectrum disorder (ASD) estimates the heritability to be 83 percent, suggesting that genetic factors may explain most of the risk for ASD, according to a study published by JAMA.

Studies have found that autism spectrum disorder (ASD) aggregates in families. In a previous study, ASD heritability was estimated to be 50 percent. To define presence or absence of ASD, the study used a data set created to take into account time-to-event effects in the data, which may have reduced the heritability estimates. Using the same underlying data from this study, Sven Sandin, Ph.D., of the Icahn School of Medicine at Mount Sinai, New York, and colleagues used an alternate method (used by previous studies in the field) to calculate the heritability of ASD.

The study included a group of children born in Sweden 1982 through 2006, with follow-up for ASD through December 2009. The analysis included 37,570 twin pairs, 2,642,064 full sibling pairs, and 432,281 maternal and 445,531 paternal half-sibling pairs. Of these, 14,516 children were diagnosed with ASD. Various models were tested and using the best-fitting model, the ASD heritability was estimated as 83 percent and the nonshared environmental influence was estimated as 17 percent.

"This estimate [83 percent] is slightly lower than the approximately 90 percent estimate reported in earlier twin studies and higher than the 38 percent estimate reported in a California twin study, but was estimated with higher precision. Like earlier twin studies, shared environmental factors contributed minimally to the risk of ASD," the authors write.

The researchers note that twin and family methods for calculating heritability require several, often untestable assumptions. Because ASD is rare, estimates of heritability rely on few families with more than one affected child, and, coupled with the time trends in ASD prevalence, the heritability estimates are sensitive to the choice of methods.

"The method initially chosen in the previous study led to a lower estimate of heritability of ASD. The current estimate, using traditional methods for defining ASD discordance and concordance, more accurately captures the role of the genetic factors in ASD. However, in both analyses, the heritability of ASD was high and the risk of ASD increased with increasing genetic relatedness," the researchers write.

Medicaid Cuts: "My Son Will Regress"

In The Politics of Autism, I discuss Medicaid services for people with intellectual and developmental disabilities, as well as other government programs at the federal and state levels.

At Disability Scoop, Michelle Diament reports on protests against Graham-Cassidy:

Even with momentum for the Republican plan waning, disability advocates are continuing to push their members to call senators since there hasn’t yet been a vote.

“The danger right now is if Senate offices think that folks aren’t as outraged about this bill as the last, so every individual voice adds to the overwhelming wall of pressure we’re fighting to maintain,” said Julia Bascom, executive director of the Autistic Self Advocacy Network.

Graham-Cassidy includes a per capita cap to Medicaid - to find out what that does, check out our guide #SaveMedicaid https://t.co/2ZHjBHMULh

— autselfadvocacy (@autselfadvocacy) September 25, 2017

In Minneapolis, Pat Kessler reports at WCCO-TV:

Gov. Mark Dayton was at the State Capitol Monday with a few of the 1.2 million Minnesotans who are on Medicaid.

About 22 percent of all Minnesotans are on Medicaid. It pays 54 percent of all nursing home costs.

Of those on Medicaid, 60 percent of them are seniors and people with disabilities.

One of them is Kate Swenson’s son, who has autism.

“If [Medicaid] goes away, we don’t know what we’ll do, because in the short time he has been there, public education couldn’t take care of him,” she said. “They’ve taught him skills — such as using the toilet, drinking from a cup, sitting in a chair. If we lost that, my son will regress dramatically. And there are no other options.”

"LET HIM LEARN!"

In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act.

Hayley Munguia reports at The San Gabriel Valley Tribune

About 30 people flooded Claremont Unified’s school board meeting Thursday, all wearing green shirts with a photo of a 10-year-old Pasadena boy. Over the photo, the shirts said, “LET HIM LEARN.”

The boy is Christopher Frealy, a disabled student who’s zoned to Pasadena Unified. But PUSD doesn’t have an adequate facility or curriculum to cater to his disabilities, which impair his vision, speech, motor functions and mobility.

According to his mother, Anne Bigley, the only school in Southern California that can accommodate his needs is Claremont’s Danbury School. Frealy was set to attend the school this year, and Claremont Unified representatives personally assured Bigley that he would have a spot. But an apparent breakdown in communication between the two school districts has blocked his transfer.

...
Family friend Stuart Pfeifer read from an email that Claremont Unified Superintendent Jim Elsasser sent to Frealy’s supporters. It said that Elsasser could not comment on the specifics of the situation, but he noted in bold that “the permit process must be formalized by completion of the proper paperwork by the family and/or the requesting district” and that “filing the appropriate paperwork is a pre-requisite for admission to such a program.”

Pfeifer said, “Without saying so specifically, Dr. Elsasser seemed to be blaming a paperwork error for Christopher not being allowed to go to school. That’s unconscionable if that’s true, if that’s the real reason.”

Pfeifer was the last of Frealy’s supporters to speak. When he was finished, the crowd broke out in chants of, “Let him learn.”

Earlier, Munguia reported:

Pasadena Unified offered to have Christopher attend McKinley School. But the campus has no elevator, and third grade classrooms are housed on the second floor. The boy’s parents say that makes it impossible for him to attend.

“Pasadena admits they don’t have a school or a proper curriculum for him,” Frealy said.

Bigley said it’s her son who will suffer if neither school district takes responsibility for his education.

“That’s the tragedy in this,” she said. “Because how does he get an education? He’s really smart. He deserves one.”

CBS2 reports:

National Disability #SaveMedicaid Call-in Day

In The Politics of Autism, I discuss Medicaid services for people with intellectual and developmental disabilities, as well as other government programs at the federal and state levels.

From the Autism Society:

Today is National Disability #SaveMedicaid Call-in Day! The Autism Society of America is joining with disability advocates across the nation for a day of action in opposition to the Graham-Cassidy legislation. The latest Affordable Care Act repeal effort is gaining momentum, so we must keep up our advocacy and defeat the proposal. While a number of senators made overtures about opposing the plan over the weekend, we can’t let up until each NO vote is fully secured.

Graham-Cassidy proponents are working overtime to ensure passage of this harmful legislation that guts $215 billion from federal Medicaid spending, eliminates the Medicaid expansion, and allows states to penalize those with pre-existing conditions. The proposal also waives requirements for essential health benefits – which make it possible for people with autism and their loved ones to obtain critical long-term services and supports to work and live independently in their communities. The Senate could vote on the repeal bill as early as tomorrow or Wednesday, so we must ACT NOW to stop it.
Please join today’s National Call-in Day! We need everyone to flood office phone lines and let senators know cuts and caps to Medicaid are unacceptable. Call (202) 224-3121 and ask your senator to please oppose Graham-Cassidy and reject proposed cuts and restructuring to Medicaid.

Here’s What You Can Say

I am calling to tell Senator _____ to vote NO on Graham-Cassidy, and reject any plan that significantly cuts Medicaid and institutes block grants and per capita caps. Such a proposal will have devastating effects on people with disabilities, especially those with autism. Medicaid provides healthcare services and long-term services and supports that maintain health, function, independence and the well-being of over 10 million with disabilities and their families, including mine. I urge Senator _____ to oppose the Graham-Cassidy bill.

High Priority Targets
Maine (Senator Collins); Alaska (Senator Murkowski); West Virginia (Senator Capito); Ohio (Senator Portman); Arizona (Senators McCain and Flake); Colorado(Senator Gardner); Kansas (Senator Moran); North Carolina (Senators Tillis and Burr); Iowa (Senators Grassley and Ernst); Indiana (Senator Young); South Dakota(Senator Rounds); North Dakota (Senator Hoeven); and Tennessee (Senators Alexander and Corker)

Additional Items and Other Ways to Help

The Senate Finance Committee will hold a hearing on the Graham-Cassidy proposal today at 2:00 p.m. EST; for the video link to the hearing, click here.

Share your story! Spread the word throughout social media using hashtag #SaveMedicaid.

Consensus Against Graham-Cassidy

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

There is a remarkable consensus against the Graham-Cassidy health bill.  Groups and interests that usually disagree are united in opposition. From America's Health Insurance Plans:

The following statement was jointly released on September 23, 2017 by the American Medical Association, American Academy of Family Physicians, American Hospital Association, Federation of American Hospitals, America’s Health Insurance Plans, and the BlueCross BlueShield Association regarding the Graham-Cassidy-Heller-Johnson legislation.

We represent the nation’s doctors, hospitals, and health plans. Collectively, our organizations include hundreds of thousands individual physicians, thousands of hospitals, and hundreds of health plans that serve tens of millions of American patients, consumers, and employers every day across the United States.

While we sometimes disagree on important issues in health care, we are in total agreement that Americans deserve a stable healthcare market that provides access to high-quality care and affordable coverage for all. The Graham-Cassidy-Heller-Johnson bill does not move us closer to that goal. The Senate should reject it.

We agree that the bill will cause patients and consumers to lose important protections, as
well as undermine safeguards for those with pre-existing conditions. Without these
guaranteed protections, people with significant medical conditions can be charged much
higher premiums and some may not be able to buy coverage at all.

We agree that the bill will result in dramatic cuts to Medicaid and a funding cliff in the
future, fundamentally changing the way that states provide coverage for some of our most vulnerable citizens. This means that millions of patients will lose their coverage and go without much-needed care.

We agree that the individual insurance market will be drastically weakened, making
coverage more expensive and jeopardizing Americans’ choice of health plans. By not
providing all states with sufficient funds to support working families who need help buying coverage, millions will go without it.

We agree that the bill’s current implementation timelines are not workable. State and
industry leaders will need to completely transform their individual insurance markets and
Medicaid programs in little more than a year – an impossible task.

Health care is too important to get wrong. Let’s take the time to get it right. Let’s agree to
find real, bipartisan solutions that make health care work for every American.

At The Washington Post, Christopher Ingraham provides a partial list of groups against the bill:

• Adult Congenital Heart Association
• ALS Association
• Alzheimer's Association
• Alzheimer's Impact Movement
• American Cancer Society
• American College of Emergency Physicians
• American College of Physicians
• American College of Preventive Medicine
• American Diabetes Association
• American Academy of Family Physicians
• American Academy of Pediatrics
• American Cancer Society
• American College of Emergency Physicians
• American College of Physicians
• American College of Preventive Medicine
• American Congress of Obstetricians and Gynecologists
• American Diabetes Association
• America's Essential Hospitals
• American Foundation for the Blind
• American Health Care Association
• America's Health Insurance Plans
• American Heart Association
• American Hospital Association
• American Liver Foundation
• American Lung Association
• American Medical Association
• American Nurses Association
• American Osteopathic Association
• American Occupational Therapy Association
• American Psychiatric Association
• American Psychological Association
• American Public Health Association
• American Society for Addiction Medicine
• American Speech-Language-Hearing Association
• Amputee Coalition
• The Arc
• Arthritis Foundation
• Association for Community Affiliated Plans
• 
  
• Association of American Medical Colleges
• Association of University Centers on Disabilities
• Asthma and Allergy Foundation of America
• Autism Society
• Autism Speaks
• Autistic Self Advocacy Network
• Big Cities Health Coalition
• Blue Cross Blue Shield Association
• Catholic Health Association
• Children's Hospital Association
• Center for Medicare Advocacy
• Coalition to Stop Opioid Overdose
• Consortium for Citizens with Disabilities
• COPD Foundation
• Cystic Fibrosis Foundation
• Family Voices
• Federation of American Hospitals
• HIV Medicine Association
• Infectious Diseases Society of America
• JDRF
• Lutheran Services in America
• Kaiser Permanente
• March of Dimes
• Medicare Rights Center
• National Association of Medicaid Directors
• National Association of Pediatric Nurse Practitioners
• National Association of School Nurses
• National Coalition for Cancer Survivorship
• National Down Syndrome Congress
• National Health Council
• National Institute for Reproductive Health
• National Kidney Foundation
• National Multiple Sclerosis Society
• National Organization for Rare Diseases
• Planned Parenthood
• Public Health Institute
• Robert Wood Johnson Foundation
• Trust for America's Health
• WomenHeart

Autistic People in Emergency Rooms and Acute-Care Hospitals

In The Politics of Autism, I discuss health care issues and state Medicaid services for people with intellectual and developmental disabilities.

Christina Jewett of Kaiser Health News reports at The Washington Post: (h/t Judith Ursitti)

Teenagers and young adults with severe autism are spending weeks or even months in emergency rooms and acute-care hospitals because of a lack of community treatment programs able to deal with their outbursts, according to interviews with parents, advocates and physicians from Maine to California as well as federal and state data.

These young people — who may shout for hours, bang their heads on walls or lash out violently at home — are taken to the hospital after community social services and programs fall short and families call 911 for help. Once there, they sometimes are sedated or restrained for long periods as they wait for beds in specialized facilities or return home once families recover from the crisis or find additional support.

While the data on extended hospital stays are limited, national numbers on people with an autism diagnosis who were seen in hospital ERs nearly doubled over five years to 159,517 in 2014, according to the latest figures from the federal Agency for Healthcare Research and Quality. The total admitted for a behavioral or medical issues also nearly doubled, to 26,811 in 2014.

...
Private insurance data underscore the concerns. In a study published in February in the Journal of Autism and Developmental Disorders, researchers from Pennsylvania State University found that young people ages 12 to 21 with autism are four times likelier to go to the emergency room than peers without autism. They also are 3½ times more likely to be admitted to a hospital floor — at which point they stay in the hospital nearly 30 percent longer.

The analysis, based on a sample of 87,000 insurance claims, also showed that older adolescents with autism are in the ER more than their younger counterparts. The percentage of their visits for a mental-health crisis almost doubled from 2005 to 2013.

Buckeye Police Scandal

In The Politics of Autism, I discuss interactions between police and autistic people.   Police officers need training to respond appropriately.  When they do not, things get out of hand.  In the case of Buckeye, Arizona, there may also have been a cover-up.

Dave Biscobing and Megan Thompson report at KNXV in Arizona:

The mother of a 14-year-old boy with autism, who was traumatized after a run-in with a Buckeye, Arizona officer, says she never expected that what happened to her son would spark a national discussion.

Diane Leibel also said see police body camera video was also one of the hardest things she’s ever had to do.

“It was excruciating honestly,” she said. “I’ve never heard my son scream like that before. I don’t understand how it even got there.”
...
“We were afraid that our child would be ridiculed or that something would happen somewhere along the line,” Danielle Leibel said. "I didn’t think it would be from a police officer.”
...

“I’m every emotion I can think of. That’s my baby who was manhandled like that,” Leibel said. “I do see that would be reasonable to approach him if he saw him putting something to his face….But after he showed him what he had, that should have diffused the situation. It should end there.”

Parents of other children with autism have told they are horrified by what happened and how the incident was handled by the officer.

DeVos Is Not Supporting Full Funding of IDEA

In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act.

Christina Samuels at Education Week excerpts an interview with DeVos:

Would you push for full funding of IDEA? That's 40 percent of the excess cost of educating a child with disabilities.

I think it's a fair question to ask Congress about what the funding levels should be. Right now it's about 15 to 18 percent. And yet, the regulations continue to sort of get piled on here and there. They just continue to sort of make it more and more cumbersome and more and more burdensome for states and for local districts. There has to be, I think, a regular review of that and look at the balance of that, and see what's really right. But most of all what's really right for the students we're trying to serve and for the families and what kind of empowerment do they have in that decision-making.

So you want might want to call for slimming down regulation, but also upping the funding for IDEA. Do I have that about right?

I'm not advocating one way or another right now. I'm just saying it's clear that Congress has not funded it at the level they committed to when the law was passed. And I think that is something that should be reviewed on a regular basis.

Shortened School Hours

In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act.

At The Oregonian, Samantha Swindler writes that Oregon schools have shortened hours for many kids with autism and other disabilities.

Joel Greenberg, attorney with the advocacy group Disability Right Oregon, estimated at least 15 percent of the calls he deals with are about students placed on reduced school hours.

"It often happens that a district will tell a parent, 'His behavior is really aggressive right now, let's reduce his school day for a short time, and then gradually return him to a full day,'" Greenberg said. "We'll then often find that that short time got longer and longer, at times up to two years."

The state doesn't track how frequently this happens, but over a four-month period last year, 68 families called an Oregon disability help hotline because of a child's shortened day due to behavior.

Of those callers, 27 percent had a child age 7 or younger.

"What's the prognosis for a child who needs a lot of support and probably more education and he's getting 1-2 hours (in class) a day at age 6?" Greenberg asked.
....
Senate Bill 263, signed into law this summer, specifies that a district cannot place a student on an abbreviated day without a parent's consent. Districts must consider at least one option that includes supports to allow the student to attend a full school day.

More Groups Agains Graham-Cassidy

In The Politics of Autism, I discuss Medicaid services for people with intellectual and developmental disabilities, as well as other government programs at the federal and state levels.

From Autism Speaks:

Please contact your US Senator TODAY and ask them to VOTE NO on any proposal to reduce Medicaid funding for people with autism. Medicaid is the single most important insurer for people with autism and pays for the majority of all long-term care adults with autism receive. Proposed changes in the Graham-Cassidy-Johnson proposal would result in less Medicaid funds for states and would negatively impact people with autism and their families. Please take action today!

DETAILS HERE.

The American Psychiatric Association:

The American Psychiatric Association (APA) today voiced its strong opposition to the Graham-Cassidy bill under consideration in the U.S. Senate.

“This legislation, the latest attempt to repeal the Affordable Care Act, will lead to millions of Americans losing their health care coverage,” said APA CEO and Medical Director Saul Levin, M.D., M.P.A. “We are particularly concerned that this bill would make drastic cuts to the Medicaid program and rollback expansion, which has allowed 1.3 million Americans with serious mental illness and 2.8 million Americans with substance use disorders to gain coverage for the first time. This bill harms our must vulnerable patients.

"The APA is ready to work with members of both parties to craft a bipartisan solution that stabilizes the health insurance market and ensures Americans have access to quality, affordable health care.”

Against Graham-Cassidy

In The Politics of Autism, I discuss Medicaid services for people with intellectual and developmental disabilities, as well as other government programs at the federal and state levels.

From The Arc:

“While this piece of legislation has a new title and makes new promises, it is more of the same threats to Medicaid and those who rely on it for a life in the community. The Graham-Cassidy-Heller-Johnson proposal cuts and caps the Medicaid program. The loss of federal funding is a serious threat to people with disabilities and their families who rely on Medicaid for community based supports.

“Many of the provisions in this legislation are the same or worse than what we encountered earlier this year, which shows that the architects of this bill are still ignoring the pleas of their constituents with disabilities. The talking points sugar coat it, but the reality is simple – under this proposal less money would be available despite the fact the needs of people who rely on Medicaid have not decreased. The Arc remains staunchly opposed to legislation that includes per capita caps or block granting of Medicaid. We need Members of Congress to find a solution that actually takes into consideration the needs of people with intellectual and developmental disabilities,” said Peter Berns, CEO of the The Arc.

Ill-Trained Cop Screws Up Encounter with Innocent Autistic Kid

In The Politics of Autism, I discuss interactions between police and autistic people.   Police officers need training to respond appropriately.  When they do not, things get out of hand.

Alexis Egeland reports at The Arizona Republic:

Police body-camera footage shows a Buckeye police officer detaining a 14-year-old boy with autism after he became suspicious of the boy, who was practicing one of his calming techniques at the time.

The Buckeye Police Department has said they think the officer reacted to a reasonable suspicion, but the family's attorney says there is insufficient training for officers to deal with people on the autism spectrum, something the boy's family would like addressed.

The footage, which the family attorney posted on YouTube on Sunday, shows an officer exiting his vehicle to approach the boy near Verrado Town Square and ask him what he's doing. The boy says he's "stimming" and holds up a piece of string.

We're demanding 3 things: 1) apology from officer; 2) community service from officer to autistic community; 3) training for all Buckeye PD.

— Timothy Allen Scott (@ScottTrialLaw) September 18, 2017

If Buckeye PD does those 3 things, we will be flexible in resolving the boy's financial damages, but those 3 issues are mandatory.

— Timothy Allen Scott (@ScottTrialLaw) September 18, 2017

Autism Society v. Graham-Cassidy

In The Politics of Autism, I discuss Medicaid services for people with intellectual and developmental disabilities, as well as other government programs at the federal and state levels.

From the Autism Society:

Last week, Senators Bill Cassidy and Lindsey Graham unveiled the latest plan to repeal the Affordable Care Act, and decimate the Medicaid program. Similar to previous plans, the Cassidy-Graham proposal is another heartless attempt to strip away a critical lifeline from the nation’s most vulnerable communities. Although the official Congressional Budget Office (CBO) score is forthcoming, we know the Cassidy-Graham plan proposes the same damaging cuts and caps to Medicaid as its two unsuccessful predecessors, the American Health Care Act (AHCA) and Better Care Reconciliation Act (BCRA).

The Cassidy-Graham plan puts per capita caps on Medicaid, leading to devastating cuts in funding, penalizes states that have invested in their Medicaid systems, and phases out the Medicaid expansion and marketplace subsidies. The bill also includes block grants which will sunset after 2026, leaving uncertainty as to how funding gaps will be addressed down the line. A few senators have come out against the proposal, but we need to take action TODAY to ensure the Cassidy Graham plan fails to make it to the floor for a vote.

Contact your senators (202-224-3121) today and urge them to oppose the Cassidy-Graham plan or any other bill that cuts, caps or block grants Medicaid. We demonstrated the power of our collective voices with previous attempts to gut Medicaid, and together we can ensure the Cassidy-Graham proposal meets a similar fate.

Not Much Federal Money for Transition Research

The Department of Health and Human Services (HHS) has issued its Report to Congress on Young Adults and Transitioning Youth with Autism Spectrum Disorder.

According to IACC’s analysis of the ASD research portfolio (including both federal and private funders), funding allocated to projects on lifespan issues, including the transition to adulthood, represented the smallest segment of ASD research funding. In 2015, projects on lifespan issues received 2 percent ($6.1 million) of overall combined federal and private ASD funding, similar to the investments made in previous years; this percentage does not change when including only federal sources.  When considering only the topic of transition, the proportion is less than 2 percent of total funding. In terms of number of projects rather than percentage of funding, lifespan issues again were 2 percent of the entire ASD research portfolio, with 34 projects across both federal and private sources; of these, 21 were devoted to transition issues.

As can be seen in Table 2, programs currently supporting research related specifically to the transition to adulthood among youth and young adults with ASD were found in only four agencies: NIH, HRSA, ED, and DOD. In 2013-2016, only 18 federally-funded research projects focused on transitioning youth and young adults with ASD were newly awarded across these four agencies; seven of these were in response to NIH’s Services Research for Autism Spectrum Disorder across the Lifespan (ServASD) Initiative, and four were in response to autism-specific research programs within HRSA. Across all federal agencies surveyed, only six investigator-initiated research projects focusing on transitioning youth and young adults with ASD were funded through broadly targeted programs: four projects through investigator-initiated extramural research programs in NIMH and NICHD, one study in response to ED’s (NCSER) cross-disability call for research on transition, and one investigator-initiated research project funded through DOD.

Special Education Teacher Shortage in Oklahoma

In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act.

Last month, Caitlin Ostroff reported at CNN:

Public schools in 48 states and the District of Columbia report teacher shortages in math for the 2017-18 school year, according to the US Department of Education. Forty-six states report shortages in special education, 43 in science and 41 in foreign languages.

Jennifer Palmer reports at Oklahoma Watch:

Oklahoma schools started the school year with more than 500 teaching vacancies, but special education is the most difficult to fill, according to a recent survey of 300 districts by the Oklahoma State School Boards Association. Some districts report special education teacher vacancies year after year.

The shortage of special education teachers is a nationwide problem. It is likely compounded in Oklahoma by the state’s comparatively low teacher salaries, although state law requires that special education teachers receive a salary of 5 percent more than general education teachers. Forty-six states, including Oklahoma, reported shortages in special education for the 2017-2018 school year; math and science are also hard-to-staff areas.
...
High turnover is driving the special-education teacher shortage. Special education teachers tend to leave the classroom at higher rates than general education teachers, and they burn out quicker, research has shown. Coupled with the normal teaching demands is a grueling amount of paperwork and meetings required by federal law.

But the shortage is a pipeline issue, too. Federal data show students graduating with teaching credentials in areas like early childhood and elementary education far outnumber those credentialed to teach students with disabilities. The University of Oklahoma, for instance, graduated six special education teachers in 2015-2016, compared to 69 in elementary education. Keeping those graduates in Oklahoma is an even bigger issue: More than half of OU’s spring teaching graduates accepted jobs out of state this year.

Yet Another Run at ACA

In The Politics of Autism, I discuss Medicaid services for people with intellectual and developmental disabilities, as well as other government programs at the federal and state levels.

From ASAN:

The Senate is at it again, trying to rush through disastrous legislation to take our health care away. The Graham-Cassidy bill introduced this week will have the same devastating effects as the repeal bills we’ve been beating back all year. It will slash Medicaid funding, leave millions without health insurance, and allow insurance companies to deny you coverage if you have a disability.

We stopped them from taking away our health care before, and we can stop them now. You know the drill: call both of your Senators, then email them. You can find phone numbers for your Senators’ offices at contactingcongress.org, and use Access Living’s email tool to send them emails.

CBPP offers details on one effect of the bill:

Cap and cut federal Medicaid per-beneficiary funding for tens of millions of seniors, people with disabilities, and families with children starting in 2020. Instead of the existing federal-state financial partnership, under which the federal government pays a fixed percentage of a state’s Medicaid costs, Cassidy-Graham would cap federal Medicaid funding at a set amount per beneficiary, irrespective of states’ actual costs. The cap would grow more slowly each year than the projected growth in state per-beneficiary costs. Prior CBO estimates suggest that Cassidy-Graham would thus cut the rest of Medicaid (outside the expansion) by $175 billion between 2020 and 2026, with the cuts reaching $39 billion (8 percent) by 2026, relative to current law.