IDEA Full Funding

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

A June 15 release from Rep. Jared Huffman:

Today, Representatives Jared Huffman (D-CA), David McKinley (R-WV), Tim Walz (D-MN), Dave Reichert (R-WA), Kurt Schrader (D-OR), and John Katko (R-NY) introduced the bipartisan IDEA Full Funding Act, H.R. 2902, to level the playing field for children with disabilities and provide them with a high quality education.

In 1975, Congress passed the Individuals with Disabilities Education Act (IDEA), with the goal of guaranteeing that every child with disabilities would have the opportunity to reach his or her full potential. At that time, the federal government committed to pay 40 percent of the average per pupil expenditure for special education. Unfortunately, that pledge has never been met: current federal funding makes up just 15.7 percent. The bipartisan IDEA Full Funding Act would require regular increases in IDEA spending to finally meet the federal commitment to America’s children and schools, relieve the burden on states and local school districts, and ensure educational opportunities for all students with disabilities.

“The law guarantees every student the right to a free and appropriate public education, but Congress needs to provide the resources to make that guarantee meaningful.” said Rep. Huffman. “That’s why I’m joining with my colleagues from across the aisle to introduce the IDEA Full Funding Act, because we know that providing our children with a first-class education should not be a partisan issue. The bottom line is this: no child should ever be denied a quality education, or be kept from reaching their full potential, because they have a disability. The IDEA Full Funding Act, which is supported by teachers, parents, school leaders, and disability advocates, would ensure our schools have the resources they need to support students with disabilities, and that Congress finally meets its commitments to all students.”

“The Individuals with Disabilities Education Act created a commitment to children with special needs and their families,” said Rep. McKinley. “This is a promise the federal government has failed to keep until now. The IDEA Full Funding Act puts us on a path towards fulfilling the promise we made to our children and grandchildren”

“As a teacher, I believe every child deserves a shot at the American Dream and the chance to reach their full potential,” said Rep. Walz. “The federal government needs to hold up their end of the bargain to ensure this promise can be reality. This legislation helps us uphold one of our nation’s core values: every child deserves the opportunity to succeed.”

“In four decades, we’ve failed to keep up with our own promise, as Congress mandated by law, to fund education programs for students with disabilities,” said Rep. Schrader. “This is unacceptable for every one of our students. It’s the schools that have to pick up the tab where we’ve fallen short. That not only costs our school districts money, but it takes away from other programs, diminishing the overall quality of education our communities can provide. Our bill will finally fulfill that promise and relieve our schools, giving them the ability to better fund programs like Advanced Placement, CTE, and STEM.”

"After over 40 years of the Federal Government failing to fulfil its promise to students of all abilities throughout our country, I am proud to work with my colleagues to introduce this crucial piece of legislation,” said Rep. Katko. “This bill will require the Federal Government to finally meet its commitment to support special education and the teachers who work tirelessly to ensure all of our children have an opportunity to succeed."
Rep. Huffman also introduced the IDEA Full Funding Act in the 114th Congress.
Senator Van Hollen (D-MD) plans to introduce companion legislation in the United States Senate.

The IDEA Full Funding Act  is supported by teachers, school administrators, parents, and disability advocates, including: AASA, The School Superintendents Association, American Council for School Social Work, American Federation of State, County & Municipal Employees, American Federation of Teachers, American Music Therapy Association, American Occupational Therapy Association, American Physical Therapy Association, American Psychological Association, American Speech-Language-Hearing-Association, Association of School, Business Officials International, Association of Educational Service Agencies, Council of Administrators of Special Education, Council of Great City Schools, Council for Exceptional Children, Council for Exceptional Children (Teacher Education Division), Council of Parent Attorneys and Advocates, Higher Education Consortium for Special Education, Learning Disabilities Association of America, National Association of Elementary School Principals , National Association of Secondary School Principals, National Association of Social Workers, National Association of School Psychologists, National Association of State Directors of Special Education, National Center for Learning Disabilities, National Center for Transgender Equality, National Disability Rights Network, National Down Syndrome Congress, National Education Association, National PTA, National Rural Education Advocacy Consortium, National Rural Education Association, National School Boards Association, School Social Work Association of America, Software & Information Industry Association, TASH, and The ARC of the United States.

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Tim Kaine on Autism, Medicaid, and School

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

Senator Tim Kaine of Virginia has commented on Medicaid cuts.  In Hampton Roads, Jane Hammond reports at The Daily Press:

"My sense is in the discussion about health care, three things have gotten huge attention: jeopardizing the status of people with pre-existing conditions; the number of Americans that would lose health care, the millions; and premium effects, especially on seniors," Kaine said Thursday. "But I think the Medicaid cuts and the effect on children have not gotten the attention that they deserve. 

"If you're a child is in a school system and you have an IEP (Individualized Education Program, a document developed for students with special needs), because you have a specified disability, the school systems are getting reimbursed by Medicaid for most of what they do for youngsters," he said. "If you are the mom of a kid with autism, and the child is getting some special services at an autism provider, that's likely paid for with Medicaid."

A Wednesday release from Kaine's office:

Today, U.S. Senator Tim Kaine released a district-by-district report on the importance of Medicaid to Virginia’s public schools and how the $1.3 trillion combined cuts to Medicaid in the Trump budget and the Republican health care plan – known as TrumpCare – would harm schools and the children who attend them. In Virginia alone, for the most recent reporting school years, school districts received nearly $33 million in federal Medicaid funding for school-based services for students. Schools use Medicaid dollars to cover health-related services for eligible children and for services provided in a child’s special education plan under the Individuals with Disabilities Education Act (IDEA).

The Trump Administration’s proposed cut to Medicaid would put these funds for Virginia schools in jeopardy. In Virginia, more than one million individuals, including 600,000 kids, rely on Medicaid for health care coverage. In schools, Medicaid dollars are used for both primary and preventive care such as vision and hearing screenings, diabetes and asthma diagnosis and management, occupational and physical therapy, nursing care, mental health evaluation and services, special education aides and instructors in classrooms, and other services and personnel provided to students with disabilities.

Protesting Senate Trumpcare

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

For many Americans, Medicaid means welfare, which means handouts to lazy bums.  Opponents of Medicaid cuts have to show who actually benefits.

From The New York Times:




Disabled people protested outside Mitch McConnell's office:

Trumpcare and Perceptions of Medicaid

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

If critics of Trumpcare want to move public opinion, they need to change the image of Medicaid as a handout to lazy, able-bodied adults. In particular, they need to show that many beneficiaries are people with autism and other disabilities.

Some background:

The Kaiser Family Foundation reports on a survey:

When asked whether Medicaid is more similar to other health insurance programs or to welfare programs, more people see Medicaid as health insurance (60%) than welfare (37%). There is a significant partisan divide in these perceptions, with most Democrats and independents viewing Medicaid as health insurance and a narrow majority of Republicans viewing it as welfare.

 

Portland Student Can Go to the UN After All

In The Politics of Autism, I discuss the civil rights of people with autism and other disabilities. 

Grant Butler reports at The Oregonian:

After months of whirlwind emotions, a Portland teen who won a trip to the United Nations, but then had the trip denied because he has autism, has learned that he will be able to go on the trip after all.

Niko Boskovic, 15, finished first in an essay contest sponsored by North Portland's Peninsula Odd Fellows Lodge. As the winner, he was given the opportunity to join 300 other winners from around the world for next month's 10-day United Nations Pilgrimage for Youth in New York City and Washington, DC.

But shortly after winning, Niko's invitation to attend the event was withdrawn by the national board overseeing the trip. After his family worked

with Disability Rights Oregon to advocate for his inclusion, the trip is back on.
"We finally got all the details ironed out this week, and the issues have been resolved between the parties," said Loreta Boskovic, Niko's mom, noting that details of the agreement are confidential.

Texas Law on Licensing Behavior Analysts

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.

Sebastian Herrera reports at The Houston Chronicle:

Specialists who treat children with autism in Texas will soon be required to obtain licenses after Gov. Greg Abbott recently signed an amended version of Senate Bill 589 into law.

The bill, by Sen. Eddie Lucio Jr., D-Brownsville, will require licenses for applied behavior analysts, therapists most known for their treatment of autism. After easily passing in the Texas Senate on May 1, the bill also swiftly passed in the House on May 23 before heading to Abbott's desk.

"Because of the tireless work behind SB 589, our most vulnerable Texans who benefit from applied behavioral intervention - such as children with autism, along with those with developmental, intellectual, and physical disabilities, and with brain injuries - will now be protected by SB 589, which will reduce the probability and the possibility of them being harmed by unqualified practitioners," Lucio Jr. said in a statement.

The bill's supporters have said a law is needed to regulate the profession. Texas has now joined more than 25 other states requiring licenses for behavior analysts.

Police Involvement

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.

At Pacific Standard, David M. Perry explains why schools escalate behavior problems into law enforcement issues.

But schools do punish people when they are panicking, and Sam Crane, an attorney and the director of public policy at the Autistic Self Advocacy Network, is afraid she knows why. Behavior intervention plans, she explains, are part of disability-rights education legislation. Once you have a plan, you have all kinds of added rights as a member of a protected class of American citizen. If you charge someone with a crime, though, schools can skip right past disability law. "Under the IDEA," Crane writes me, "[a] student would be entitled to a manifestation determination, to decide whether his behavior was a manifestation of a disability. There's no such requirement when referring a kid to law enforcement." Crane believes that, around the country, schools are pushing teachers and other staff to press charges.

Ami Tint and colleagues have an article titled "Correlates of Police Involvement Among Adolescents and Adults with Autism Spectrum Disorder" at the Journal of Autism and Developmental Disorders.  The study involved Ontario, Canada. The abstract:

This study aimed to describe police interactions, satisfaction with police engagement, as well as examine correlates of police involvement among 284 adolescents and adults with autism spectrum disorder (ASD) followed over a 12- to 18-month period. Approximately 16% of individuals were reported to have some form of police involvement during the study period. Aggressive behaviors were the primary concern necessitating police involvement. Individuals with police involvement were more likely to be older, have a history of aggression, live outside the family home, and have parents with higher rates of caregiver strain and financial difficulty at baseline. Most parents reported being satisfied to very satisfied with their children’s police encounters. Areas for future research are discussed in relation to prevention planning.

From the article

A history of aggression differentiated individuals who did and who did not interact with police in the observation period. Aggressive behaviors commonly occur in ASD (Kanne and Mazurek 2011; Matson and Rivet 2008; Mazurek et al. 2013), with rates reported to occur in up to 68% of affected individuals at some point in their lives (Lecavalier 2006). These behaviors can result in negative physical, emotional, and financial consequences for family members (Hartley et al. 2012; Hodgetts et al. 2013). Despite a high need and the recognized existence of effective empirically based interventions, there is often a lack of professional knowledge and community-based resources to assist individuals with ASD and their families deal with aggressive behaviors (Hodgetts et al. 2013; White et al. 2012). In the current study, an individual’s history of aggressive behavior, caregiver strain and police contact were associated with each other, further highlighting the need for appropriate community-based family supports

Pleas on Medicaid and Autism

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

Tennessee dads recently gathered in Nashville to send a message to Senators Bob Corker and Lamar Alexander. Andy Spears writes at Common Dreams:

The assembled dads each had letters about the importance of Medicaid for their own children.

One of the dads, John Shouse, had this to say:

Senator Alexander, Senator Corker, we gather here today as fathers, with Father’s Day mere hours away, to share with you our concerns with the course of action currently being set in Washington. We are fathers of children with disabilities. We are imploring you to vote to save Medicaid, and the other 'lifeline programs' that are currently facing unprecedented funding cuts. This is a course that, left unchecked, WILL have dire negative consequences for our sons and daughters.

Whether they are young children, or adults trying to find their way in the world now that their school years are over, our sons and daughters face tremendous challenges because of disability. Challenges that most people … even fathers such as yourselves … can hardly imagine.

Shouse spoke of his own experience, having a son with autism who benefits from Medicaid-funded programs.

An autistic person writes The Daily Gazette in Schenectady, New York:

I am 33 years old and I have Aspergers Autism, executive function disorder and I suffer from depression and anxiety.

I’m disabled on Social Security and Medicaid at the moment, I live alone but I get help with transportation and daily chores through an non-for profit called Wildwood.

For most of my adult life, I’ve been unemployed and very depressed. However, in recent years because of therapy, support from wildwood, and my medication I’ve begun to turn my life around. I’m going back to school to earn a culinary degree, I have part-time employment at a local business and am I much happier, healthier person.

Someday I want to get off disability, pay taxes, own a home and run a small business.
However, without my medication and support at moment I can’t do this. These past few years have been the best of my adult life. I can see my goals getting closer and closer to fruition. But if the Trump health care bill goes through, none of this will happen. I will sink back into depression and in action. I need Medicaid and I need the support right now or I will stay in the system forever.

Medicaid Cuts in Texas, Missouri, and Pennsylvania

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

Ashley Lopez reports at KUT-FM:

In a matter of weeks, the U.S. Senate could be voting on a Republican plan to repeal the Affordable Care Act. On Wednesday, 25 health care advocacy groups in Texas sent a letter to Republican Sens. John Cornyn and Ted Cruz raising concerns about the plan.

The groups worry Medicaid per capita caps could be carried over from the House bill, known as the American Health Care Act. For simplicity’s sake, this means spending per person in the Texas Medicaid program could be capped according to how much the state spent in 2016.

Anne Dunkelberg, an associate director with the Center for Public Policy Priorities, said using 2016 Medicare spending as a starting point for what states get could create a lot of problems.

For example, she said, "in 2016 we had axed those [pediatric] rate cuts, and we had many children with developmental delays and disabilities not able to access the services they need.”

In addition, Texas hadn’t effectively made lifesaving hepatitis C treatments available last year in the Medicaid program. Behavioral therapies, which are often used by children with autism, also weren’t rolled into the program by 2016.

Kate Kasper writes at The St. Louis Post-Dispatch:

According to the Center on Budget and Policy Priorities, 602,000 children in Missouri get their health care through Medicaid. This means that two out of five kids in our state are able to see a doctor when they are sick, get vaccinations and important screenings they need to stay healthy. The AHCA’s Medicaid provisions would make it especially hard for children with special health care needs, including those with disabilities, to get the care they need to stay healthy, remain in their communities, and succeed in life. Medicaid is a lifeline for children with disabilities and their families, serving 40 percent of all children in America with special health care needs such as autism.

Alecia Deal, a community health worker in St. Louis and mother of three, relies on this lifeline for her 14-year-old autistic son. Without Medicaid, her son would not be able to receive therapy of any kind, psychiatric treatment or medications. In fact, he would be unable to attend his school for children with special needs because Medicaid pays for that as well.

Steve Tawa reports at KYW-AM:

Pennsylvania U.S. Senator Bob Casey says the bill could trigger major cuts to Medicaid. The School District of Philadelphia, for example, could lose more than $11 million, and all told, Casey says Medicaid funding for the Commonwealth could be cut $135 million.

“None of those dollars should ever be at risk because a group of extreme ideologues in Washington think they have a better way to do this,” said Casey

He waved a letter he received from Pamela Simpson of Coatesville, whose 5-year-old son, Rowan, is diagnosed with Autism Spectrum Disorder, and ADHT. She shared her family’s story, with Rowan in tow.

“We measure success with tiny things that most parents take for granted,” said Simpson. “Will my child be able to use the bathroom by himself? Will be he able to tell us what he did at school today? Will he be able to use a spoon? Those therapies are crucial to help us answer questions like this, with the answer, yes!”

Simpson points out without Medicaid benefits, occupational, physical, and speech therapy, and medication would be inaccessible for her young son.

In Casey’s words, this is “about our basic values, and we’re better than that.”

Fever

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

Here is just a partial list of correlates, risk factors, and possible causes that have been the subject of serious studies:

• Pesticides;
• Air pollution and proximity to freeways;
• Maternal thyroid issues;
• Autoimmune disorders;
• Induced labor;
• Preterm birth;
• Birth by cesarean section;
• Maternal and paternal obesity;
• Maternal and paternal age;
• Maternal post-traumatic stress disorder;
• Smoking during pregnancy;
• Antidepressant use during pregnancy. 

Add one more.

A release from Columbia's Mailman School of Public Health:

Feber during pregnancy may raise the risk for autism spectrum disorder (ASD) in the child, according to a study led by scientists at the Center for Infection and Immunity (CII) at Columbia University's Mailman School of Public Health. The effect was most pronounced in the second trimester, raising odds for ASD by 40 percent. Risk of an ASD was increased by over 300 percent for the children of women reporting three or more fevers after the twelfth week of pregnancy.

The study is the most robust to date to explore the risk of ASD associated with fevers across the entire span of pregnancy, and of the capacity of two different types of commonly used anti-fever medications—acetaminophen and ibuprofen—to address that risk. Risks were minimally mitigated among the children of women taking acetaminophen for fever in the second trimester. Although there were no cases of ASD among children of mothers who took ibuprofen, a nonsteroidal anti-inflammatory drug, researchers could not ascertain whether risk was mitigated due to the extremely small number of women using this particular drug for fever. Results of the study appear in the journal Molecular Psychiatry.

The researchers followed 95,754 children born between 1999 and 2009, including 583 cases of ASD identified in Norway through the Autism Birth Cohort (ABC) Study. Mothers of 15,701 children (16 percent) reported fever in one or more four-week intervals throughout pregnancy, similar to rates reported in the U.S. ASD risk was increased by 34 percent when mothers reported fever at any time during pregnancy, and by 40 percent in the second trimester. The risk increased in a dose-dependent fashion from 1.3-fold with one or two fever episodes after the twelfth prenatal week to 3.12-fold with three or more episodes.

“Our results suggest a role for gestational maternal infection and innate immune responses to infection in the onset of at least some cases of autism spectrum disorder,” says first author Mady Hornig, associate professor of Epidemiology and director of Translational Research at CII. Questionnaire analysis did not indicate an association between risk and maternally-reported symptoms of infection in individual organ systems that might implicate specific infectious agents. An ongoing study is testing blood samples collected at mid-pregnancy and at birth to explore the possible role of specific infectious agents and the contribution of distinctive patterns of immune response among mothers and children to understand the mechanisms creating vulnerability.

“Future work should focus on identifying and preventing prenatal infections and inflammatory responses that may contribute to autism spectrum disorder,” says senior author W. Ian Lipkin, John Snow Professor of Epidemiology and director of CII

Medicaid Cuts and Disability Services

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

At NPR, Alison Kodjak reports on Our Place Day Services, a day center for adults with disabilities, in Slinger, Wisconsin.

"We help men and women become the men and women they were meant to be," says Donna Ellenbecker, director of Our Place.

But she's worried about the Republican plan to overhaul Medicaid.
\
All but one of her 33 clients pay for their classes and care at Our Place with Medicaid dollars. Wisconsin's Medicaid system includes a program called IRIS that grants people with disabilities a budget, based on their level of need, to use for services that help them live in the community.

The state's approach is part of a national trend in recent decades to move people with severe developmental disabilities out of institutional settings by providing the support they and their families need to live more independently – either with their families, in community-based group homes or even on their own.
...

Ellenbecker worries that if the current Republican plan is passed, or the kinds of budget cuts Trump is proposing go through, the money for those support services just won't be there.

"It's a 25 percent cut you know, and a 25 percent cut it is going to affect these programs," she says. "There's no way that a 25 percent cut can come out of any other program — except long-term care."

That's because many support services are considered optional under the law that governs Medicaid. So, if state lawmakers are forced to choose between say, job coaches, and traditional medical care, the job coaching is likely to lose out.

Study Finds that Inclusion Works

In The Politics of Autism, I write about special education and inclusion.

The National Center for Analysis of Longitudinal Data in Education Research (CALDER) finds in a new report that inclusion works. The abstract:

We use longitudinal data on all high school students in Washington State, including postsecondary education and workforce outcomes, to investigate predictors of intermediate and postsecondary outcomes for students with disabilities. We pay particular attention to career and technical education (CTE) enrollment and the extent of inclusion in general education classrooms, as prior research suggests these factors may be particularly important in influencing the outcomes of students with disabilities. We
estimate models that compare students with other students within the same school district, who are receiving special education services for the same disability, and have similar baseline measures of academic performance and other demographic information. We find generally weak relationships between CTE enrollment in any particular grade and intermediate and postsecondary outcomes for students with disabilities, though we replicate earlier findings that students with disabilities who are enrolled in a “concentration” of CTE courses have higher rates of employment after graduation than
students with disabilities who are similar in other observable ways but are enrolled in fewer CTE courses. We also find consistently strong evidence that students with disabilities who spend more time in general education classrooms experience better outcomes—fewer absences, higher academic performance, higher rates of grade progression and on-time graduation, and higher rates of college attendance and employment—than students with disabilities who are similar in other observable ways but spend less time in general education classrooms. [emphasis added]

Medicaid Cuts and the Senate

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

From Mike Wasmer, director of state government affairs at Autism Speaks:

The Senate is currently considering the American Health Care Act. Autism Speaks has serious concerns with the changes the bill makes to Medicaid, the single most important insurance program for people on the spectrum. Please contact your Senators and encourage them to make Medicaid work for people with autism.

Contact link here:  
https://act.autismspeaks.org/site/Advocacy?cmd=display&page=UserAction&id=237

Alan Fram reports at AP:

President Donald Trump told Republican senators Tuesday that the House-passed health care bill is "mean" and urged them to craft a version that is "more generous," congressional sources said.

The president's comments, at a White House lunch with 15 GOP senators, came as Senate Republican leaders' attempts to write their own health care package have been slowed by disagreements between their party's conservative and moderates.

Trump's remarks were a surprising critique of a Republican-written House measure whose passage he lobbied for and praised. At a Rose Garden ceremony minutes after the bill's narrow House passage, Trump called it "a great plan."