A Settlement in New Orleans

AP reports:

New Orleans public schools have agreed to ensure that students with disabilities are properly treated and educated while also being given the chance to attend the schools they want to attend, under a settlement announced Friday (12/19).

The Southern Poverty Law Center sued state and city school officials in 2010, alleging students with disabilities did not have equal access to schools in New Orleans and were not protected from discrimination. The law center sued on behalf of children with a variety of disabilities including autism, hyperactivity and bipolar disorder.

Under the settlement, the city's schools would set up a system to identify children with disabilities, place them in schools and help them achieve educational goals. Individual schools would also be required to do more to make sure they are handling students with disabilities properly. An independent monitor would be put into place to track efforts to meet the settlement's requirements.

The deal needs to be approved by U.S. District Judge Jay Zainey. The suit was filed against the Louisiana Department of Education and the Orleans Parish School Board. Since Katrina struck in 2005, most of the public schools in New Orleans were taken over by the state education agency and turned into charter schools.
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In its suit, the law center claimed the state violated the Individuals with Disabilities Education Act and the Americans with Disabilities Act. Roughly 11 percent of the city’s students are considered to have disabilities, according to Leslie Jacobs, the founder of New Orleans-based Educate Now! and a former state school board member.

The original lawsuit outlined cases in which parents of children with disabilities were unable to find schools that could accommodate their children. In one case, the suit said, a parent was told a child “was no longer welcome to return to school because of a manifestation of his disability.” The child, then 15, had been diagnosed with bipolar disorder and attention deficit with hyperactivity disorders.

Chelating Doctor Agrees to Have License on Probation

The Chicago Tribune reports:

A Naperville doctor nationally known for offering alternative autism treatments has agreed to have her Illinois medical license placed on probation for at least a year after state regulators accused her of subjecting two children to unwarranted, dangerous therapies.

Dr. Anjum Usman, whose treatment of a Chicago boy was featured in the Tribune's 2009 "Dubious Medicine" investigation, will continue to practice but will take extra medical education classes and will submit 10 of her patients' medical charts quarterly to Dr. Robert Charles Dumont, an integrative medicine physician who will assess them.

Tribune series: Dubious medicine

The Tribune investigation found that many alternative treatments for autism are unproven and risky, and are based on scientific research that is flawed, preliminary or misconstrued. The treatments, the Tribune found, amount to uncontrolled experimentation on vulnerable children. Some of these therapies were at the heart of the disciplinary case state medical authorities filed against Usman.

The Illinois Department of Financial and Professional Regulation, which will oversee Usman's probation, had alleged that Usman provided "medically unwarranted treatment that may potentially result in permanent disabling injuries" to the boy featured in the Tribune series and another child. In prescribing chelation, a hormone modulator and hyperbaric oxygen therapy, Usman subjected the Chicago boy to unproven treatments and demonstrated "extreme departure from rational medical judgment," state medical regulators originally had charged.

From a 10/13/11 post at Left Brain/Right Brain:

Usman is also associated with the 2005 death-by-chelation of five-year-old Tariq Nadama. According to court records, Usman diagnosed the boy with “high aluminum” and referred him to Roy Kerry, a Pennsylvania physician. Kerry, an ear-nose-and throat surgeon, inexplicably treated the boy for lead poisoning.

According to Kerry’s notes, which were published by the Pennsylvania Medical Board:

“We don’t have the entire record at all. Mother left her entire volume of his records home. But we have been in communication with Dr. Usman regarding EDTA therapy. He apparently has a very high aluminum and has not been responding to other types of therapies and therefore she is recommending EDTA, which we do on a routine basis with adults. We therefore checked him to it … But on testing for the deficiency indicator we find him only indicating the need for EDTA at the present time. Therefore we agree with Dr. Usman’s recommendation to proceed with the treatment. She recommends 50mg per kilo. He is 42 pounds today. So we’ll treat him with a 20-kilo child and give 1 gram of EDTA.

Nadama arrested and died in front of his mother during the third chelation round in August, 2005. A year later, Kerry was certified as a DAN doctor after completing an eight-hour training course. Prosecutors declined to charge Kerry for the death, and the state medical board suspended his license for six months and ordered extra training.

Housing in Minnesota

Abby Simons reports at the Minneapolis Star-Tribune:

Across Minnesota, families with children who have autism or other disabilities struggle to stay in rental homes in the face of disruptions or damage caused by the kids. The situation is particularly acute in the Somali community, where one in 32 children between ages 7 and 9 is on the autism spectrum, according to a University of Minnesota study. That compares to 1 in 48 for children of that age in the overall population.

The Minnesota Legislature tried in 2013 to help alleviate the problem by creating a $500,000 fund aimed at providing housing for families like Ahmed’s. But bureaucratic glitches have kept the money in limbo, with the families unable to access it.

The money initially was allocated to the Minnesota Housing Finance Agency, which finances housing for low- and middle-income families. MHFA then advertised for community-based organizations to apply for the money so it could be distributed to needy families. Although they initially showed interest, Habitat for Humanity and City of Lakes Community Land Trust never applied.

Twin Cities Habitat for Humanity spokesman Matt Haugen said that because the organization works both as a builder and a lender, it would risk violating fair lending laws if it took money tied to a specific goal, like housing for families of autistic children facing eviction. “It’s certainly not a matter of what we want to do; it’s a matter of how we do it,” Haugen said. City of Lakes did not respond to requests for an interview.

Anxiety

Rachel Zamzow reports at The Philadelphia Inquirer:

About 40 percent to 60 percent of people with autism have a diagnosable anxiety disorder or an atypical anxiety driven by irregular fears or unusual social anxiety, said [Dr. Connor] Kerns, assistant professor at the A.J. Drexel Autism Institute. 

Anxiety is a common concern for the parents of autistic children and adults on the spectrum. But major obstacles have prevented the accurate assessment of anxiety in autism, leaving treatments for this symptom lacking. 

For one, most standard anxiety measures are not designed for people with autism, said Kerns. And they can't deal with unusual anxiety symptoms, such as those caused by a minor change in routine. 

"A lot of the atypical fears are much more closely intertwined with symptoms of autism itself," she said.
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But among people with autism and their families, anxiety is hard to overlook. This symptom can become increasingly apparent as a person reaches adolescence and adulthood, when the demands of social situations are more complex, said Kerns. In 2020, the number of autistic adults receiving services in Pennsylvania is expected to top 36,000, according to the Pennsylvania Autism Census. 

About 20 percent of autistic children and adults in the state have co-occurring anxiety disorders, according to a 2011 state survey. And 20 percent to 50 percent report that their needs for mental health care, including anxiety counseling, are not being met.

Wandering: A Tragedy in South Carolina

Many posts have discussed wandering. Many youths with autism are attracted to water, so drowning is a major hazard. The Poughkeepsie Journal reports:

Jayden Morrison’s family is devastated after the 4-year-old autistic boy from White Plains was found dead Friday morning in a pond near the family’s second home in South Carolina, two days after being reported missing. 

“I’m hurt,” Carolyn Sumpter, Jayden’s grandmother told The Journal News on Friday afternoon. “My body hurts. My heart hurts. 

Police, first responders, K9 units, dive teams and about 150 volunteers had been searching for the boy since he disappeared from the family’s vacation home in Little River, South Carolina, about 5:30 p.m. Christmas Eve. His mother, Tabatha Morrison, had gone shopping and left her three children at the home with the grandmother 

Sumpter, who regularly watched the boy at his White Plains home, where she lived with his parents, said minutes after the mother left she noticed the front door was ajar and the boy was missing 

“We’ve always been in a gated situation,” Jayden’s father, Andre Morrison, told reporters Thursday afternoon after he arrived in South Carolina from New York. “We knew he was a wanderer when he was younger, but he was always in an enclosement. We never put him in a position to go out and freely wander.”

Employing ASD People in Silicon Valley

At The Bay Area News Group, Jeremy Thomas writes of ASD adult Joe Cintas:

Cintas' life changed in March when he was hired at SAP's Palo Alto office, along with six other employees, as part of the German software company's groundbreaking Autism at Work program. Developed with Danish company Specialisterne, a pilot project proved successful in India, so SAP brought it to the United States, first to Silicon Valley and later to Pennsylvania, and Germany, Canada and next year, Brazil. So far, 42 employees with autism have been hired at eight SAP locations around the world.

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While company programs for hiring autistic employees are nothing new, they've usually involved low-wage, simple tasks. SAP is among the first to embrace the idea that some of those with autism can excel in skilled positions.

Initially limited to software testing, the program quickly spread to other areas, including software development, customer support and graphic design. Impressed with the early success, SAP is planning to bring the program to its other Bay Area offices in Dublin, South San Francisco and possibly Sunnyvale.

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While SAP is by far the largest company to push for hiring autistic employees, it isn't the first. For more than 25 years, Livermore's Ratermann Manufacturing has had a work site at the Morgan Autism Center in San Jose where about a dozen autistic men and women are paid minimum wage to assemble parts for use with compressed gas tanks. Ratermann provides supplies and faxes orders; the crew fills them and ships them out.

Drugstore chain Walgreens also has an initiative for hiring autistic workers at its distribution centers and is in the process of expanding it to its retail stores. With SAP paving the way, autism advocates hope more opportunities are on the horizon.

Organizing Parents in Simi Valley

In California, The Simi Valley Acorn reports on the No Education at Simi Group, consisting of parents who criticize the quality of education in the Simi Valley Unified School District. The group placed an ad in the paper:

“It is the opinion of this group that some students may not have received a ‘free appropriate public education,’” the Nov. 14 advertisement read. It asked parents interested in joining the group or sharing information to email NoEducationAtSimi@gmail.com. 

SVUSD has approximately 2,300 students in special education, or roughly 13 percent of all the district’s students. According to an informational flier provided to the Acorn via email, No Education At Simi’s goal is to bring “an awareness of some of the pitfalls” the members have experienced in the district.

Why was an ad necessary?  There is no public list of special ed students because IEPs are confidential.  Therefore special ed parents have a hard time identifying and reaching one another.  There are other organizational barriers as well:

First, parents might be leery of drawing public attention to their children's disabilities. In the case of high-functioning autism, the other kids will probably notice a difference without necessarily knowing the label.  Once the label is public, however, the child might be subject  to more bullying.

Second, special ed parents might be reluctant to share information with one another.  Those who get a "good" IEP might worry that others will want the same deal and create a "run on the bank."

Third, organizing takes time, which is one thing that the parents of autistic kids and other special-needs students do not have.

Fourth, special needs are diverse.  The things that paraplegic kids need (e.g., wheelchair ramps) are totally different from autistic kids need (aides, communications devices).  A dollar that goes to one need is a dollar not available to another.  Even within the autism spectrum, there are diverse needs that might make it hard for parents to form a community of interest.

Update on Neli Latson

Things did not go well for Neli Latson after he received a reduced sentence for assaulting a Stafford County deputy in Virginia.  In June, The Free Lance Star reported:

Latson was living in a group home in Winchester last August when he got into a scuffle with a deputy there. He was convicted of assaulting a police officer and attempting to disarm a police officer but was released on time served. 

He was then brought back to Stafford and charged with a probation violation. This time, he was ordered to serve another year and was serving that sentence when he picked up his latest charge on April 24. 

According to the evidence presented by Commonwealth's Attorney Eric Olsen, Latson was placed on suicide watch and was being escorted by three officers from one area of the jail to another. 

As one of the officers was instructing Latson to put his hands on the wall, according to testimony, Latson replied, "don't [expletive] talk to me that way." 

He later added, "I will rock your ass. I will rock your punk ass," and punched the officer three times in the head. 

A Taser was used on Latson to get him under control, according to the evidence.

Ruth Marcus has published inaccurate commentary on this case, as The Daily Howler explains.

A release from the American Civil Liberties Union of Virginia:

Today, the ACLU of Virginia sent a letter to Governor Terry McAuliffe asking him to review the case of Reginald “Neli” Latson, a young man with intellectual and developmental disabilities who has been held in solitary confinement in a state correctional facility for almost a year.  The letter urges the Governor to take executive action to allow and facilitate Latson’s transfer to a secure treatment facility in Florida, a recommendation that was made by the Virginia Department of Behavioral Health and Disability Services (DBHDS).

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“Unfortunately, Mr. Latson is not the only Virginia prisoner in solitary confinement, nor is he the only person with a developmental disability to be jailed rather than treated,” said Gastañaga. “That is why we have asked the Governor to undertake a comprehensive investigation of the use of solitary confinement and the treatment of people with disabilities by law enforcement and in our prisons and jails.” Gastañaga added, “As Governor, he is also in the best position to lead a broader conversation about how our law enforcement and judicial systems can respond more effectively to situations involving people in our criminal justice system and those in mental health crises.” 

The ACLU of Virginia has joined the Arc of Virginia, Autism Speaks, and others to ask the Governor to take whatever steps are necessary to transfer Latson to an appropriate facility, including granting him a conditional clemency. 

Latson currently is serving time on an assault conviction and has a trial scheduled on January 5, 2015, on another assault charge. Both assault charges were a direct result of the repeated and cumulative failures of law enforcement, prosecutors, and correctional officers to properly address his disabilities. 

Read the ACLU of Virginia’s letter to the Governor here.

Priorities

At The Huffington Post, Linda Mastroianni says that genetic research is fine but might not be the most urgent priority:

This research will hopefully benefit and improve the lives of the next generation but it will definitely not ameliorate the lives of children that are waiting to be evaluated for a possible Autism diagnosis or the kids that have been on a waiting list for an early intervention program, nor will it help the young adults that are aging out of the school system with no available work programs or resources waiting for them afterwards.

As important as research is, I truly don't believe this should be the number one priority when discussing how to improve the lives of people with autism. 

How is research helping the autistic individuals living in our society today? The ones that are stigmatized for who they are; the children who are on waiting lists for government funded therapy that unfortunately never comes and whose parents are forced to go privately, depleting finances at an astounding rate.

Disparities

African American and Hispanic kids get diagnoses or educational determinations of autism at lower rates than white kids. At Heartland Health Monitor, Alex Smith cites recent work by Jason Travers and quotes David Mandell.

Most of what’s known about autism disparities comes from health data or projections based on sample groups. By looking at individual numbers from individual schools, Travers’ study underscores how Hispanic and African-American students are missing out on services to which they are legally entitled.

Mandell hopes the new findings will serve as a call to arms.

“For a long time, advocacy around autism has really been led by very well-meaning, very effective, relatively wealthy or privileged individuals. And I think that this suggests an urgent need to engage other families in this battle to obtain appropriate care for children with autism,” he says.

After finishing his snack, Wendy Santillan’s son [Raoul, of Kansas City, KS] grabs his mother’s smart phone. Wendy was lucky; she found help for Raoul through Oasis, a University of Kansas training program for parents of autistic children geared toward families living in rural or remote areas.

Raoul is doing well. Defying stereotypical autism behavior, he smiles and seems to enjoy playing with his mother. But Wendy says she gets nervous thinking about his future and what will happen when he starts grade school.

“I don’t know what’s coming next, you know?” she says. “I don’t know if there’s public resources or if I’m going to have to put him in private. I don’t know. I have no idea what’s next. And it’s a worry. Of course it’s a worry, as a parent.”

Wendy still encounters hostility from some Hispanic parents when she suggests their children may have symptoms of autism. So she’s not only doing all she can to educate herself about the disorder; she’s working to educate other families in her community as well.

Due Process and Mediation

Meghan M. Burke, Samantha E. Goldman have an article in The Journal of Autism and Developmental Disorders titled "Identifying the Associated Factors of Mediation and Due Process in Families of Students with Autism Spectrum Disorder."   They cite previous studies showing that families with an ASD child are more likely to push back than those of children with other disabilities. There are also differences among the families with ASD children. An excerpt:

First, families who advocated more and had weak  family-school partnerships were significantly more likely to file for due process or mediation (p’s\.0001). Because one piece of advocacy is understanding special education law (Trainor 2010), including conflict resolution procedures, parents who advocate more frequently may be more  likely to know about mediation and due process and, because of their knowledge, more likely to utilize these procedures. In addition, poor family-school partnerships may increase the likelihood of conflict because the parent and the school do not trust each other (Fish 2008). Conversely, family-school partnerships may deteriorate after a family files for due process (Mueller 2009).

Second, child characteristics also significantly related to the use of procedural safeguards. Compared to students who spent a large majority of their day in the general education classroom, families of students who were included for only 0–20 % of their time were 1.92 times more likely to enact their safeguards. This finding aligns with previous research indicating that placement is a common issue in due process hearings among families of students with ASD (Mueller and Carranza 2011). Our data indicates that families may be arguing for more inclusive settings. Parents of children with ASD who spend most of their time in self-contained classrooms may have greater concerns about their child’s quality of instruction and staff (Ryndak and Downing 1996). Child age also related to the enactment of safeguards with parents of older students being significantly more likely to file mediation or due process. Given that family-centeredness decreases with age (Dunst 2002), parents of older students may be more likely to use safeguards.
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Third, parent characteristics also related to the usage of procedural safeguards. Families with greater incomes were significantly more likely to file due process or mediation. Given the high costs of hearings (Mueller 2009), families with more money may be better positioned to file for due process. However, the issue of income may represent a larger challenge of access and for whom due process and mediation can be viable conflict resolution procedures. Being unable to afford attorney representation or secure legal advocacy services, families from lower income backgrounds may feel that due process is not an equitable process (Shemberg 1997).

• Dunst, C. J. (2002). Family-centered practices: Birth through high school. Journal of Special Education, 36, 139–147.
• Fish, W. W. (2008). The IEP meeting: Perceptions of parents of students who receive special education services. Preventing School Failure, 53, 8–14.
• Mueller, T. G. (2009). Alternative dispute resolution: A new agenda for special education policy. Journal of Disability Policy Studies, 20, 4–13.
• Mueller, T. G., & Carranza, F. (2011). An examination of special education due process hearings. Journal of Disability Policy Studies, 22, 131–139.
• Ryndak, D. L., & Downing, J. E. (1996). Parents’ perceptions of educational settings and services for children with moderate or severe disabilities. Remedial and Special Education, 17, 106–118.
• Shemberg, A. (1997). Mediation as an alternative method of dispute resolution for the Individuals with Disabilities Education Act: A just proposal? Ohio State Journal on Dispute Resolution, 12,739–757.
• Trainor, A. A. (2010). Diverse approaches to parent advocacy during special education home-school interactions: Identification and use of cultural and social capital. Remedial and Special education, 31, 34–47.

Obama Signs ABLE Act

A release from Representative Ander Crenshaw:

Congressman Ander Crenshaw, author of the Achieving a Better Life Experience Act (ABLE Act), announced today (12/19) that President Barack Obama has signed his legislation into law. The action caps more than eight years of teamwork to create tax-free savings accounts for millions living with disabilities. These Americans and their families will now have the same financial planning tool available to others as they reach for every possible piece of the American dream.

Crenshaw, House-side author of the ABLE Act, who first introduced seed legislation to create ABLE accounts in 2006, issued the following statement:

“The ABLE Act is now law of the land, and a brighter future opens to millions of individuals living with disabilities. I am privileged to have been in a position to guide this reform from an idea into a law and never doubted we would reach our goal. Credit goes to fantastic teamwork from House and Senate Members on both sides of the political aisle and determination from hundreds of advocacy groups across the nation. Their focus and drive to educate Capitol Hill on the need for this law made a key difference.

“Positive achievements can be made by working together to improve the quality of life for those in need. The ABLE Act proves that. ABLE accounts open the door to financial peace of mind for so many. These Americans will no longer stand on the sidelines asking why can’t I use IRS-sanctioned tools to put money away for my future like others. They will be in the game and playing to win.”

BACKGROUND: Officially titled The Stephen Beck, Jr. Achieving a Better Life Experience Act of 2014, in honor of its long-time champion who passed away unexpectedly on December 8, the measure marks the first major legislative reform to impact the disabled since the 1990 passage of the Americans with Disabilities Act. Beck, of Burke, VA, had advocated for the reform early on. His young daughter Natalie was born with Down syndrome,

The law amends Section 529 of the Internal Revenue Service Code of 1986 to create tax-free savings accounts for qualified expenses. Benefits provided through private insurance, the Medicaid program, the beneficiary’s employment, and other sources would be supplemented, but not supplanted by the legislation. The bill passed the House on December 3 by a vote of 404-17 and was included Tax Extenders legislation which passed the Senate by a vote of 76 – 16. President Barack Obama signed the measure into law on Friday, December 19.

Editor’s Note: Go to www.crenshaw.house.gov for more information about the history of the ABLE Act.

A Different Path to a Diploma

Christina Samuels writes at Education Week:

Earlier this year, Louisiana lawmakers overwhelming approved a law that would permit some students with disabilities to opt out of the state's testing regime and instead follow a different path to a diploma.

However, implementing the new policy is turning out to be difficult, according to an article published Thursday in the New Orleans Advocate. The policy allows a student's individualized education program team, which is made up of parents, teachers, and administrators, to develop an alternate pathway to a diploma. But just how the teams are supposed to develop those plans has been a sticking point, the article said.

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The U.S. Department of Education has also indicated it will be taking a careful look at how the law, which was signed June 23, is implemented. In July, Michael K. Yudin, the acting assistant secretary of the Office of Special Education and Rehabilitative Services, and Deborah S. Delisle, the assistant secretary of the Office of Elementary and Secondary Education, sent a letter to White that outlined all the ways the policy could run afoul of the Individuals with Disabilities Education Act and the Elementary and Secondary Education Act (also known as No Child Left Behind Act).

For example, the ESEA requires that all students be given access to challenging academic and achievement standards, and the entity tasked with creating those standards is the state department of education. "To the extent the [new law] permits IEP teams to set different academic standards for some students with disabilities, those actions would violate the ESEA," the letter said. Creating a different, and potentially lower, standard for students in special education may also violate their right to a free, appropriate education under the IDEA.

Research Priorities

At Technology Review, John Elder Robison writes:

We’re sinking millions into the search for a “cure,” even though we now know that autism is not a disease but rather a neurological difference, one that cripples some of us while bringing a few others extraordinary gifts. Most of us live with a mix of exceptionality and disability. I know I do.

Research into the genetic and biological foundations of autism is surely worthwhile, but it’s a long-term game (see “Solving the Autism Puzzle”). The time from discovery to deployment of an approved therapy is measured in decades, while the autism community needs help right away.

If we accept that autistic people are neurologically different rather than sick, the research goal changes from finding a cure to helping us achieve our best quality of life.
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We can make life better for the autistic people who have major cognitive and functional challenges that today’s science can’t fix. We have a duty to make their lives better through applied technology. We owe it to our most disabled brothers and sisters to do all we can to ensure their security, safety, and comfort.

So how might this change in research direction come about? For one thing, we can put autistic people in charge. The fact is, researchers have treated autism as a childhood disability, when in fact it’s a lifelong difference. If childhood is a quarter of the life span, then three-quarters of the autistic population are adults. Doesn’t it make sense that some of us would want to take a role in shaping the course of research that affects us?

Police Training

AP reports:

Scott Schuelke, who has 25 years' worth of law enforcement experience, has trained close to 10,000 people at 300 training seminars across the state [Michigan] and country in the past three years. His seminars are designed to provide details to police, firefighters and other first responders about the group of developmental disabilities that can involve language and social impairments and unusual, repetitious behaviors.

"We're teaching (first-responders) how to communicate, how to interact, how to work with a family member or care provider," said Schuelke, a retired Lansing police sergeant who now works as an autism safety specialist with the Autism Alliance of Michigan.

Mark Boody, a police sergeant in the Detroit suburb of Novi, Michigan, who has attended Schuelke's seminars, wishes he'd known earlier what he now knows about the disorder.

"After the training, thinking back, 'Wow. I bet that person (I encountered) could be someone with autism,'" Boody said. "Now, knowing that ahead of time, we're just not going to automatically assume the negative."

Senate Passes ABLE Act

Jonathan Tamari writes at The Philadelphia Inquirer:

An unusual thing happened in Congress this month: The Senate and the House each passed legislation likely to create a law, with massive bipartisan support.

Sen. Robert P. Casey (D., Pa.), a sponsor of the bill, wound up on the same side as House Speaker John Boehner, the top Republican in Congress.

The beneficiaries of this cooperation: families facing the lifelong costs of disabling illnesses such as epilepsy or Down syndrome.

If President Obama signs the bill, people with disabilities and their families would soon have the option of creating tax-sheltered savings accounts to help pay for long-term care.

The feel-good moment was five years coming for Casey, who sponsored the Senate version of the so-called ABLE Act, for "Achieving a Better Life Experience."

The measure was rolled into a package that would renew other tax policies and approved Tuesday night by the Senate, 76-16. It passed the House on its own earlier in December.

"It allows children to lead a full life, and it gives their parents peace of mind," Casey said in a recent interview. The bill builds on similar savings accounts that already exist for education or retirement. "It's not some new theory. It works and it makes sense, and that's one of the reasons why you had such broad bipartisan support."

Some have hailed the measure as the first major bill aimed at helping the disabled since 1990's Americans With Disabilities Act.

The Senate and the ABLE Act

The Senate will vote shortly on the ABLE Act, which has passed the House.

Senator John Thune (R-SD):



Senator Richard Burr (R-NC):

Doctors Who Agree to Vaccine Exemptions

At The Boston Globe, Chelsea Rice writes of pediatricians who will agree to vaccine exemptions.  There are Internet lists of such doctors.

The majority of the pediatricians we spoke with on these and other “vaccine-friendly” doctor lists said that they do think vaccinations are important for public health, but they just can’t convince fearful parents of this, despite the fact that thousands of children are vaccinated every day without a problem.

...
Today, physicians ask to be listed on [Dr. Bob] Sears’s website of vaccine-friendly physicians. One of those is Dr. Mark Su, who has been practicing family medicine for three years on the North Shore. He refuses to turn families away because they won’t vaccinate their children.

“It’s a difficult conflict because it’s a personal health choice coming up against a public health perspective,” Su said. “In this case personal choices do affect public health of the public at large. It is what it is. My personal practice style is I’m an individual patient advocate more than I am for the public as a whole.”

Su said a much stronger priority for him than convincing vaccine-averse parents to change their minds is to maintain and build strong relationships with patients and their families that might serve both parties later on.

...
But for Seth Mnookin, author of “The Panic Virus: The True Story Behind the Vaccine-Autism Controversy,” a physician who supports a parent’s decision not to vaccinate his child puts the rest of us at risk. Mnookin said he understands the argument against turning a family away, since it’s not the child’s fault that his or her parents are hesitant about vaccines. But it also creates a risk for the other patients in the practice.

“Obviously because pediatricians see kids from birth to their teenage years to beyond, when you have kids that aren’t vaccinated in a practice, that puts everyone else in the practice at risk. Children who are too young to be vaccinated are exposed in the waiting room,” he said.

Transitions: Higher Education and Health Care

Valérie Van Hees, Tinneke Moyson, Herbert Roeyers have an article in The Journal of Autism and Developmental Disorders titled "Higher Education Experiences of Students with Autism Spectrum Disorder: Challenges, Benefits and Support Needs." Thee study took place in Flanders, Belgium, but the reactions are universal.  The abstract:

The transition into higher education constitutes a precarious life stage for students with autism spectrum disorder (ASD). Research on how students with ASD navigate college life is needed for the development of adequate support. This study investigated the challenges and support needs of 23 students with ASD in higher education through semi-structured interviews. Data were analyzed following the principles of Grounded Theory. Students faced difficulties with new situations and unexpected changes, social relationships, problems with information processing and time management and had doubts about disclosure. Facing these challenges simultaneously in the domains of education, student life and daily (independent) living, had a major impact on students’ well being. Besides these challenges, students also reported benefits that contributed to success in the three domains. They pointed out to a set of recommendations for support. These findings are linked with previous research and implications for higher education institutions are extrapolated on the basis of these findings.

This quotation from a student points out the dilemma for parents -- worldwide -- who have been scrupulous in providing structure for their ASD kids.

I think starting working later on could be a problem. I have always lived in a structure that was provided for me by others: infant school, elementary and secondary school, even in higher education. But after graduation, what will happen then? There will be no such structure. At that point everything will be new then, and open. I will have to organize my own life. That really frightens me. I could try to excel now and be a high performer at university. But once I will have finished my education, I fear that I will not know how to organize my life, and will end up with the beggars in the railway station. (David, aged 19, university)

Nancy C Cheak-Zamora and Michelle Teti have an article in Autism titled “`You Think It’s Hard Now … It Gets Much Harder For Our Children': Youth With Autism And Their Caregiver’s Perspectives Of Health Care Transition Services." The abstract:

Adolescents with Autism Spectrum Disorder diagnosis often have complex comorbid physical and mental health conditions. These youth rely heavily on their medical providers and struggle through the often rocky transition out of pediatric care into adulthood and adult-centered care. This study is among the first to qualitatively examine the health care transition experiences of youth with Autism Spectrum Disorder and their caregivers. We conducted four focus groups with youth with Autism Spectrum Disorder (n = 13) and their caregivers (n = 19) and used thematic analysis strategies to identify key themes. Parents’ discussions emphasized (a) loss of relationship with provider and lack of support transitioning from pediatric to adult care, (b) providers’ lack of knowledge about Autism Spectrum Disorder, and (c) concerns about losing guardianship. Youth emphasized their confusion and anxiety around (a) medical providers’ role, especially in the transition to adulthood; and (b) managing their medical lives independently. Our findings are important because they not only improve our understanding of health care transition needs among youth with Autism Spectrum Disorder and their caregivers but demonstrate a sound methodological procedure to facilitate input from youth with Autism Spectrum Disorder.

This quotation from a parent inspired the title:

You think it’s hard now … It gets much, much harder for our children [after they turn 18] … They won’t even give you an idea who this next doctor is because they don’t know until your child is 18 … Our child had no chance to meet this person, no chance in a safe environment with their old doctor to get comfortable with the [new] doctor. Unfortunately [healthcare] kind of really sucks for our children.

Disability Funding

Michelle Diament reports at Disability Scoop that most federal programs will at least break even  under the $1.1 trillion budget deal moving through Congress.

The plan was approved by the U.S. House of Representatives late Thursday, as the federal government’s existing budget was set to expire at midnight. Lawmakers also passed a temporary measure to give the U.S. Senate time to vote on the legislation that would fund most federal activities through Sept. 30, 2015.

Following years of belt-tightening in Washington, advocates say that just maintaining steady funding for disability programs offers some relief.

“Most of the programs that we track that support people with disabilities got level funding which we continue to say in this environment is a victory,” said Jennifer Dexter, assistant vice president of government relations at Easter Seals.

Under the deal, funding available to states under the Individuals with Disabilities Education Act will rise $25 million and vocational rehabilitation will increase $33 million. Other programs expected to see an increase include housing assistance, support for postsecondary programs for those with intellectual disabilities as well as autism and developmental disabilities efforts at the Centers for Disease Control and Prevention.

Vaccine Update

Philip Reese writes at The Sacramento Bee:

More California kindergartners are getting their vaccinations before starting school, curbing a decadelong trend of falling immunization rates, new state figures show.

The shift comes as California experiences one of its worst whooping-cough outbreaks in generations. Health experts said several prior years of lax immunization primed the state for such an outbreak.

This year’s rise in vaccination rates corresponds to the introduction of a new “personal belief” form that must be completed by parents who don’t want to immunize their children. The result of a new state law, the form must be signed by a doctor who acknowledges telling parents about the risks and benefits of vaccinations; alternatively, parents can state that visiting a doctor violates their religious beliefs. The new form replaces a document that did not require a doctor’s signature.

Read more here: http://www.sacbee.com/news/local/education/article4398622.html#storylink=cpy

The Detroit Free Press reports:

Parents who refuse vaccinations for their children because of philosophical or religious reasons will have to take another step now under a new policy by the Michigan Department of Community Health.

Starting Jan. 1, they must have their waivers certified by the local health department.

The new rule "will help ensure that those who may choose to sign a waiver have accurate information and education" about the risks and benefits of vaccines, Jennifer Smith, spokeswoman for the Michigan Department of Community Health, said in an e-mail.

The change in the department's administrative rules comes as two northern Michigan counties — Grand Traverse and Leelanau — have reported five cases of measles, a disease that in 2000 was deemed eliminated from the U.S.

Susan J. Demas writes at MLive that Michigan has the fourth-highest rate nationally of parents declining vaccinations.

But it gets even worse. Thanks to exhaustive reporting from MLive, we now know almost half of people in Michigan (44 percent) live in counties with kindergarten vaccination rates below the level needed for "herd immunity" -- encompassing 800 schools.

,..

Vaccinations are safe and studies claiming otherwise have been roundly discreditedby the medical community.

And yet, anti-vax sites dominate top search-engine hits, competing with the Centers for Disease Control as information sources.

Terrified parents, already subjected to endless articles that they're not feeding their kids or disciplining them right, now see they could kill their babies with shots.

That nice lady from "The View" said her son got autism afterward, so it could happen, right?

The internet age means we're all experts, so as Tom Nichols argues in The Federalist, no one is really an expert anymore. Certainly not needle-wielding doctors who haven't seen fraudulent late-night informercials on deadly vaccines.

More information, quite frustratingly, only makes anti-vaxxers more resolute.

We can't give up trying to change things -- it's imperative for public health that we don't. But it means this problem is more insidious that we may think.

At The Atlantic, Carl Romm writes of a study of attitudes toward flu vaccines:

The study built on previous research from [Brendan] Nyhan and Exeter University’s Jason Reifler, published earlier this year in the journal Pediatrics, that found a nearly identical effect when parents were exposed to information about the measles-mumps-rubella (MMR) vaccine. After reading that the MMR vaccine wasn’t dangerous to their children, the Pediatrics study found, the most concerned parents were less likely that before to say they would vaccinate their children.

Both political scientists, Nyhan and Reifler have spent the past several years studying what they call the “backfire effect,” or the idea that when presented with information that contradicts their closely-held beliefs, people will becomemore convinced, not less, that they’re in the right. In one study, when staunch conservatives read information refuting the idea that the U.S. found weapons of mass destruction in Iraq, they tended to believe more firmly than before that it was true; the researchers saw similar effects in studies correcting the notion thatPresident Obama is Muslim and the claim that “death panels” were a part of healthcare reform.

From there, vaccination seemed like a logical next step in their research, Nyhan said:

“Vaccines aren’t a partisan or ideological issue, but they’re controversial. They bring up issues of identity and tribalism that feel a lot like politics,” he explained. “I have kids, and talking about vaccines on the playground is like bringing up religion. It’s very weird and delicate and controversial.”"I have kids, and talking about vaccines on the playground is like bringing up religion. It’s very weird and delicate and controversial."

Though the vaccine studies have yielded results subtly different from the “backfire effect”—people were willing to accept new information as true, even when it had no effect on what they did in the end—Nyhan believes that the same sort of mental gymnastics is likely at work across both areas: reactance, the psychological phenomenon in which persuading people to accept certain idea can push them in the opposite direction.

New Jersey Legislation

The Record reports:

Taxpayers would be allowed to donate to autism research by checking a box on their state tax returns and families would be have access to more information about programs and treatment options, under bills approved by an Assembly committee today.

Both bills cleared the Assembly Women and Children committee and head to the full Assembly for a vote.

The tax donation measure would create an autism research fund with the money ultimately being distributed by the state Department of Health.

“New Jersey has one of the best systems in the country for identifying, diagnosing and caring for children with Autism Spectrum Disorders. It also has the highest autism rate in the nation – it’s hard to find someone in New Jersey who doesn’t have a family member, friend, or neighbor who faces the challenges of autism,” bill sponsor Assemblyman Jay Webber, R-Morris, said in a statement. “Allowing taxpayers to make voluntary contributions through their income tax returns to help combat this terrible problem is an easy and convenient way to help fund the state’s many exemplary autism programs.”

The other measure would create a “New Jersey Autism Website” to be featured on the state Department of Health web site.

The quality of the state's diagnostic systems, of course, may account for the high reported prevalence of autism.

Autism Speaks, Google, and a Genetic Database

Julie Bort writes at Business Insider

Autism Speaks has teamed up with Google for a project called MSSNG to create the world’s largest database of genetic information on people with autism. The director of MSSNG is a famous geneticist, Stephen Scherer.

Google has actually been working with Autism Speaks on this project since the summer. The news on Tuesday is that the database will now be freely shared to other scientists.

Many news organizations have reported this development.  What sets this report apart is the characterization of Autism Speaks:

Not everyone "on the spectrum" suffers from some of the developmental problems associated with autism, nor views autism as something that needs to be "cured."

And because of that, Autism Speaks and this project in particular is controversial in the autistic community. A blogger on the Autism Women's Network went so far as to call Autism Speaks a "hate group."

Autism Speaks said this project is for people who do want more information and more treatment options.

ASD Youths and Crime in Pennsylvania

Mainline Media News reports:

Newly published data indicates that the number of Pennsylvania minors with autism who are getting caught up in the juvenile criminal justice system increased dramatically from 2005 to 2011, prompting researchers to call for a deeper dive into the numbers and the implementation of more strategies to guide law enforcement and other agencies in their encounters with individuals with autism.

According to the 2014 Pennsylvania Autism Census Update — a report funded by the Bureau of Autism Services in the Pennsylvania Department of Public Welfare, and a follow-up to the inaugural Pennsylvania Autism Census Project, which was released in 2009 — the rate of juvenile justice system contact among individuals with autism grew from 659 per 10,000 people in 2005 to 1,423.4 per 10,000 people in 2011.

The most common criminal charges in these cases involved property offenses and incidents of physical contact, the report states.

“Individuals with autism who have contact or multiple contacts with the justice system are (an) at-risk group both because contact with the justice system can be traumatic and misunderstood, and because the short- and long-term costs to the system for crisis events are generally disproportionate when compared to the cost of the services that might prevent such events,” the report concludes.

FAPE Behind Bars

Michelle Diament reports at Disability Scoop:

Kids with disabilities have the right to a free appropriate public education complete with academics, therapies and other supports even if they’re locked up, federal officials say.

In new guidance, the Obama administration is reminding states and local agencies that students do not relinquish their rights under the Individuals with Disabilities Education Act if they are incarcerated.

“The fact that a student has been charged with or convicted of a crime does not diminish his or her substantive rights or the procedural safeguards and remedies provided under the IDEA to students with disabilities and their parents,” wrote the U.S. Department of Education’s Melody Musgrove and Michael Yudin in a letter being sent this week to state and local officials responsible for educating youth in correctional facilities.

The “Dear Colleague” correspondence specifying obligations under IDEA comes as part of a broad package issued jointly by the Education and Justice Departments designed to clarify responsibilities to all students who are incarcerated.

The issue is meaningful, according to Attorney General Eric Holder, since about 20 percent of youth in juvenile justice facilities have disabilities and many are not getting the services they need.

Autism and Medicaid

From Autism Speaks:

1) What has changed recently regarding Medicaid coverage for autism that has caused so many questions and concerns from the autism community?

The federal Centers for Medicaid & Medicare Services (CMS) in July advised the states that they must cover all medically necessary care for children with autism through age 21. The obligation is part of the Early and Periodic Screening, Diagnostic and Treatment (EPSDT) benefit.

2) So what is specifically covered for autism now under Medicaid?

Congress specifies which benefits are mandatory under Medicaid, but the federal government does not mandate specific treatments. [emphasis added] For instance, Medicaid covers childhood cancer, but there is no “mandate” to provide chemotherapy to treat it. Instead, the states are directed to provide all medically necessary care for specific conditions.

Because it is up to each state to define “medical necessity,” Autism Speaks will closely monitor whether any state ignores the scientific evidence and determines applied behavior analysis (ABA) is never medically necessary for autism. In addition, a child’s treating physician must determine that ABA is medically necessary.

In those cases when ABA is determined to be medically necessary, it must now be a covered EPSDT benefit under Medicaid.

3) This directive from the federal government was issued in July. But many families say they still can’t get benefits through Medicaid. Why the delay?

The states are being provided time to incorporate the new federal guidance into their Medicaid plans. CMS said that states may need time to review their current programs to determine if any regulatory or policy changes are needed, and also to seek out public input, but stressed this must be done “expeditiously.”

While CMS did not establish a specific compliance date, it did make clear that the states are now obligated to deliver medically necessary care and should not “delay or deny” the provision of services.

4) Officials in my state say covering autism benefits will add tens of millions of dollars to their Medicaid budgets. Is this true? 

State estimates regarding the cost of providing autism benefits through insurance have historically been wildly inflated. For example, when South Carolina was considering legislation to require private insurers to cover autism, state officials estimated it would cost $10.6 million a year. Once the law was passed, the actual cost came in at $2 million per year, less than one-fifth of what the state had predicted. Similarly, a projection developed by Arizona overestimated the actual cost by 1,200 percent.

5) If Medicaid is a federal program, why aren’t the states just ordered to comply?

Medicaid is a joint federal/state health care program for lower-income children, individuals with disabilities regardless of age, and other groups. The federal government and the states share the cost and responsibilities of running Medicaid. The states typically have broad leeway in how they manage their Medicaid programs, but must provide certain mandatory benefits in ordered to receive federal matching funds. EPSDT is a mandatory benefit.

6) Why is Medicaid coverage considered such an important issue if only certain groups are covered?

Medicaid is the primary source of health insurance coverage for one-third of all American children with autism; including secondary insurance coverage, one-half receive Medicaid benefits.

7) If my child has Medicaid and has been denied ABA, even after being recommended by a doctor, what can I do?

Your child has the right to any and all medically necessary treatment regardless of whether or not your state has added ABA to its Medicaid program. Under federal law, Medicaid beneficiaries have the right to appeal any benefit denials. If you feel like your child has been denied medically necessary benefits under Medicaid, you have the right to file an appeal with your Medicaid health plan and your state Medicaid agency. To find out how to file an appeal of Medicaid benefits denial, contact your Medicaid health plan or state Medicaid agency.

8) My state says that ABA is covered, but my Medicaid health plan keeps denying my providers’ claims saying they’re not covered, or because they don’t have any contracted providers, or for some other excuse.

Almost half of all Medicaid-covered children are enrolled in managed care, which means their state has contracted with a private insurance company or HMO to manage their program. When this happens, the insurance company acts on behalf of the state to make benefit determinations. However, the same rights to appeal still apply.

Deadly Wandering

Vincent Jackson writes at The Press of Atlantic City: 

Christine Czaja’s autistic son, Bode Taylor, was 3 when he wandered away from home for the first time.

“We were outside on the deck. There are gates everywhere that we installed for Bode. There is a gate on the outside deck. My daughter had come in the house real fast, and she left the gate open, and he wandered right to the front of the house,” said Czaja, 41, of Upper Township.

There was a line of traffic backed up in front of her house. Czaja thought the worst.

“We were like ‘Oh my God,’” said Czaja. But the family was lucky. Someone had seen the child in the road, stopped and picked him up and carried the boy home.

Czaja remained vigiliant in the years that followed, but it wasn’t enough. Bode’s wandering turned deadly when the boy left his gated backyard play area, maneuvered past the pool gate and accidently drowned. He was one month shy of his fifth birthday.

One in 68 children is identified with autism spectrum disorder. It’s estimated to affect more than 2 million people in the U.S. While autism is gaining more attention, the tendency for children with the condition to wander away from home or bolt is little known to the general public. Children with autism often have an extreme attraction to water and busy streets, which is made even more dangerous by them having little to no concept of danger. Drowning is the leading cause of death for children with autism.

Autistic and African American: A Father's Fears

A number of posts have discussed encounters between police and ASD people. The Ferguson shooting and the Garner incident in New York have many African American parents on edge. At Medium, David Dennis, Jr. writes:

Just this week, one of our therapists sent a behavioral plan for Langston, saying that if he didn’t follow spoken instructions then we should physically guide him to do what we want from him. But his therapists are White. And as incredible and helpful as they’ve been, they don’t live with the reality that we do. Our son needs to know how to follow verbal instructions because if he doesn’t, a cop will find that as justification for ending my boy’s life. While we have to modify our language and communication to better convey our needs to our son and build his social skills, him knowing how follow explicit police instructions is non-negotiable. It’s life and death. I need him to know these things.

I keep thinking about what would happen if a cop is wearing gloves and puts his hands on my son. And my son pulls away because the texture of the gloves bother him. Or if my son just doesn’t like being touched by strangers. Or doesn’t react well when people point or raise their voices at him. Right now, the best way to get Langston to follow instructions is to get at eye level with him and explain very calmly what we need from him. What if that’ll always be the best way to communicate with him and a cop sees my son’s inability to process orders as an act of disobedience. What if my son pulling back from a cop is seen as an act of aggression? What if a simple repetitive motion is mistaken for an attempt at physical confrontation? If a cop is yelling at my son and he doesn’t respond because he doesn’t understand, what’s stopping the cop from murdering my boy in cold blood?

Rodgers, Sessions, and Crenshaw on the ABLE Act

Representatives Cathy McMorris Rodgers (R-WA), Pete Sessions (R-TX) and Ander Crenshaw (R-FL) talk about the ABLE Act:

Charter Schools in DC and NY

Arianna Prothero reports at Education Week:

Fielding phone calls from parents asking about enrollment is part of everyday business for schools, but for some charter schools, the person on the other end of the line may only be posing as a parent.

Modeled after “mystery” or “secret shopper” services used in retail, authorizers in the District of Columbia and Massachusetts are using a similar tactic to make sure the charter schools they oversee are not turning away students with more specialized needs, such as children with disabilities or who are still learning English.

This issue has long dogged the charter sector which nationally, some studies show, enrolls a lower percentage of students with disabilities compared to regular public schools. The discrepancy, some charter critics say, comes from the publicly funded but independently run schools turning away such students in order to improve test scores.

“We started this because there was huge a perception among the public that charters counseled out students with disabilities,” said Naomi R. DeVeaux, the deputy director for the District of Columbia’s public charter school board. “We wanted to know if this was true.”

...
Multiple studies show that charter schools serve a smaller share of students with disabilities than regular public schools. Several reasons are floated to explain why: charter schools counsel students out; public schools over-identify students with disabilities; or for whatever reason, parents choose not to enroll their students in charters.

One of the early major reports documenting the discrepancy in special education enrollment numbers between charters and district schools nationwide was a 2012 U.S. Government Accountability Office report. Pulling data from the 2009-10 school year, the report found that, nationally, eight percent of students enrolled in charter schools had a disability compared to 11 percent in regular public schools.

Eliza Shapiro writes at Capital New York about the head of New York City Chancellor Carmen Fariña, who is visiting charter schools.

The New York Center for Autism Charter School provides specialized instruction for children with autism. And the Voice Charter School, which Fariña visited this fall, offers daily instruction in choral singing.

“I visit all schools with the same thoughts in mind: how is the school community serving the students of that particular community,” Fariña said. “Are they serving English language learners and students with special needs?”

Fariña is facing a wave of criticism from charter school advocates after she claimed some charters under-enroll English language learners and special education students, and that some charters cherry-pick high-performing students to boost test scores.

Groups like Families for Excellent Schools and the New York City Charter School Center have called upon Fariña to provide evidence backing up her claims or to retract them. F.E.S., which declined to comment for this article, will hold a rally at City Hall today demanding an apology from Fariña.

The de Blasio administration has had a troubled relationship with the city’s powerful charter school sector. De Blasio criticized charters during his mayoral campaign, singling out Success Academy C.E.O. Eva Moskowitz, whose schools Fariña has notably not visited. Spokespeople for Success did not respond to a request for comment.

De Blasio suffered a significant political blow in a losing battle against large charter networks during the spring, as the schools battled the mayor over space. During the feud, de Blasio allied himself with a coalition of independent charters, which defended the mayor’s stance on charters.

The Limits of ABLE

At Forbes, Howard Gleckman praises the House for passing the ABLE Act but frankly acknowledges its limitations:

The House passed the measure yesterday and the Senate is likely to approve it before adjourning for the year later this month. The law is a serious attempt to address a real problem—the financial challenges faced by many people with disabilities. But it is too limited and too poorly targeted to really address those issues. Mostly, it is more evidence that Congress cannot respond to the enormous financial challenges of caring for those who need long-term supports and services with small, patch-work solutions like the ABLE Act.
...
Crucially, only people who became disabled before reaching age 26 would be eligible. They could continue to participate after 26, but the onset of their disability must have occurred prior to that age. For the most part, ABLE would be limited to people with developmental disabilities, mental illness, and severe childhood conditions such as cerebral palsy.

Few older adults would be eligible since their disability usually results from late-in-life diseases such as dementia, heart failure, and severe arthritis.

In addition, while the program benefits those with friends or relatives who can contribute to the accounts, it does much less to help those from truly low-income families who may not have money to give. Some of those who would benefit already have access to another mechanism, Special Needs Trusts.

The first problem does not really apply to autism, since diagnoses usually come during childhood.
The second is more relevant.  I am grateful that ABLE will help middle-class families like mine, but it does not do much for those with greater economic challenges.

ABLE Act Passes the House

By a vote of 404-17, the House of Representatives just passed the ABLE Act, which now goes to the Senate.

Earlier, several members expressed their support.

Representative Ander Crenshaw (R-FL), the prime sponsor:



Representative Sander Levin (D-MI), ranking Democrat on the House Ways and Means Committee:


Representative Pete Sessions (R-TX), father of a Down Syndrome child and chair of the House Rules Committee:



Heritage expressed disapproval of the bill.  In his comments, House Majority Whip Steve Scalise calls it a conservative bill.

Ohio, Autism, and Mental Health Parity

At The Columbus Dispatch, Jim Siegel reports on Ohio legislation that would amend the Mental Health Parity Act to include insurance coverage for Autism Spectrum Disorders.

The Ohio Chamber of Commerce and the National Federation of Independent Business/Ohio will make Senate Bill 276 a key vote that they use to score lawmakers if amendments are added dealing with health insurance mandates for brain injuries and autism. Making it a key vote means that lawmakers who vote for the bill will get a negative score from the groups.
...
The autism bill would be more costly than the brain injury mandate, [CoC spokesman Keith] Lake said, but the brain injury bill “essentially is being done to the benefit of one company.”

That company is Mentis Neuro Rehabilitation of Houston, Texas, which has testified in support of the bill and runs a facility in Stow, Ohio. The company is represented by Robert Klaffky and Doug Preisse, a pair of influential lobbyists, particularly among House Republican leadership.

Klaffky and Preisse also represent Autism Speaks, a national autism advocacy organization.

The amendments have been drafted and could be offered in the House Health Committee on Wednesday. Committee Chairman Rep. Lynn Wachtmann, R-Napoleon, said he opposes the amendments and was not sure what was going to happen with them.

The request to amend the bill appears to be coming from House leadership. Smith, the prime sponsor of the brain injury bill, said he did not advocate for the amendment. In fact, when asked if the bill is ready for passage, he said, “not at this point, in my opinion.”