I have written a book on the politics of autism policy. Building on this research, this blog offers insights, analysis, and facts about recent events. If you have advice, tips, or comments, please get in touch with me at jpitney@cmc.edu
I discuss this decision with families even before a child is born. I tell them it's important to pick a pediatrician who shares their beliefs, as the doctor-patient relationship is a long one in pediatrics (hopefully cradle to college). Even if there may be some other disagreements down the road, you need to begin the relationship on common ground.
I've practiced long enough to remember doing spinal taps in my office and treating children with meningitis or bacterial sepsis. There were long nights spent in the ICU with families, and unfortunately, a few patients died. Some are now deaf or have other residual effects of their diseases. Each case was devastating, and I'm sure the families of every child who perished would have given anything to have a meningitis vaccine or a chickenpox vaccine for their youngster.
I understand that all parents have to make their own decisions for their children. At the same time, I get to choose how I practice pediatrics. That being said, my parents choose to vaccinate their children and we happily start off the parent/doctor partnership together. I also sleep better at night not worrying that their children will contract a vaccine-preventable disease.
Insurance Commissioner Dave Jones announced today that he has reached favorable settlement agreements with two major health insurers, Health Net and Cigna, to guarantee coverage of behavioral therapy for autism, and to provide it to all insureds whenever medically necessary.
The two new settlement agreements follow a similar settlement agreement reached last month with Blue Shield to provide behavioral health treatments, including Applied Behavior Analysis Therapy (ABA), a well-recognized and effective treatment for autism. In addition, Commissioner Jones reconfirmed that since November 2009 yet another major health insurer, Anthem Blue Cross of California, has been providing coverage of behavioral therapy for autism pursuant to Department of Insurance direction. ...As part of the settlements, Health Net and Cigna agreed to maintain an adequate provider network to enable them to provide treatment to all insureds with autism; not to reject any claims for ABA; and create dedicated customer service units or support teams specially trained to handle inquiries about ABA, requests for coverage or authorization, and for payment for ABA services. Prior to these settlements both insurers rejected claims for ABA. Anthem stopped denying coverage for ABA services in response to the Department of Insurance's direction in November, 2009, and since then has been offering ABA services as in network benefits to its insureds.
When Kim Rollins' son asked for a pair of scissors to take to school a few weeks ago, she was heartened that the fourth-grader, diagnosed with an autism-related disorder, was excited by a class project.
No, Sage Rollins explained, he didn't need the scissors for a project. He wanted them so he could cut a window in the cardboard box his teacher sent him to sit in. Sage, 10, told her that his teacher at Ronald Reagan Elementary School, in the southwest Riverside County community of Wildomar, sent him into the box when she became upset with him. Before that, she forced him to sit in a darkened supply closet, according to Rollins.
"I was outraged. I was insulted," Rollins said from her home in Wildomar, near Lake Elsinore. "I cried when I heard.
School principal Nori Chandler told a Riverside County Sheriff's Department investigator last month that Sage went into a closet on his own, when he wanted "quiet time," and was never sent by the teacher. Sage also told the deputy he went on his own when he needed a quiet place. ...
Rollins' attorney filed an administrative legal claim against the district and the teacher, a likely precursor to a lawsuit. The claim alleges that the isolation was involuntary, punitive and caused other fellow students to ridicule her son.
Using isolation as a punishment for a child with autism-related disorders not only is wrong, it is ineffective, said Ron Leaf of Autism Partnership in Seal Beach, which consults with school districts about teaching children with the disorders.
If the child knows that by acting out, he or she will be given a time out, the child may misbehave intentionally to avoid a stressful situation, such as a challenging lesson or participation in an activity, he said.
"What happened there is wrong in every which way," Leaf said.
Meet voucher supporters' new fellow strategists: students with disabilities.
Creating private school vouchers for special education students—programs that are largely unchallenged in court, unlike other publicly financed tuition vouchers—can be the perfect way to clear a path for other students to get school options, according to school choice proponents.
With this approach, "there is more success legislatively," said Malcolm Glenn, a spokesman for the Washington-based American Federation for Children. The group advocates school choice, focusing its efforts on tuition vouchers and scholarship tax-credit programs.
"Our opposition is more worried about appearing that they're standing in the way of special-needs kids' getting a good education," Mr. Glenn said. "We don't really care [about] the reason they don't oppose the legislation. If we can benefit from that reticence, ... we're OK with that."
At least seven states—Arizona, Florida, Georgia, Louisiana, Ohio, Oklahoma, and Utah—have voucher programs for students with disabilities, and some of those have multiple programs. At least another 10 state legislatures are considering new voucher offerings targeted at special education this legislative session.
In addition, Georgia lawmakers have proposed a change to their program this session that would make it simpler for students who want a voucher to qualify for one by waiving a requirement that a student has attended a Georgia public school in the prior year.
In an article published in November in the public-policy journal National Affairs, Marcus A. Winters, a senior fellow at the conservative, pro-school-choice Manhattan Institute, based in New York City, said it would be a poor decision to dismiss the strategy of using special education vouchers as a driver for the movement as a whole.
"But one of the fastest-growing types of school choice program does not fit the typical voucher mold," Mr. Winters wrote in the article. "It is certainly a mistake, however, to overlook one of the most promising avenues for advancing school choice: voucher programs serving students with disabilities."
Little is known about whether early symptom presentation differs in toddlers with ASD from ethnic minority versus non-minority backgrounds. Within a treatment study for toddlers with ASD, we compared 19 minority to 65 Caucasian children and their parents on variables obtained from the Mullen Scales of Early Learning, Autism Diagnostic Observation Schedule, and Communication and Symbolic Behavior Scales Caregiver Questionnaire. The majority of parents were from the upper classes irrespective of ethnic membership. Minority children had lower scores in language, communication, and gross motor than non-minority children. Findings indicate that subtle communication delays may be undetected or presumed unremarkable by parents of minority toddlers, and that more significant delays are needed to prompt the search for intervention services.
Even when controlling for the socioeconomic status of the kids, Landa'steam found a significant difference between the development of the minority children and the non-minority children.
"We found the toddlers in the minority group were significantly further behind than the non-minority group in development of language and motor skills and showed more severe autism symptoms in their communication abilities," Landa said.
"It's really troubling when we look at these data alongside diagnosis statistics because they suggest that children in need of early detection and intervention are not getting it," she added.
Landa's previous research has shown that children can be diagnosed with autism as early as 14 months old, and early detection is essential for early intervention. It appears that minority children may not be receiving a diagnosis of autism early enough to receive the same intervention that white children are receiving after an early diagnosis.
Landa said the disparity between when minority children are diagnosed and when white children are diagnosed could stem from cultural differences.
Different communities may have divergent perceptions of typical versus atypical development in children,
Further, some cultures may have a greater stigma surrounding disabilities and slower development, so Landa suggests that education and awareness could go a long way in these communities.
KABC reports on Van Ingraham, a man with mental retardation and severe autism. who died under mysterious circumstances Fairview Developmental Center in Orange County, California.
California Watch enlisted homicide detectives from the Seattle and Chicago police departments to review hundreds of pages from case files on the Fairview investigation. The two investigators each pinpointed six mistakes made by officers and detectives at Fairview – the most significant of which came in the hours and days after Ingraham was discovered on the linoleum floor of his room.
The Seattle and Chicago detectives, who have a combined 51 years of experience in law enforcement, noted that Fairview police did not secure Ingraham’s room to protect evidence, did not promptly interview witnesses, and did not realize that the patient’s broken neck should have been investigated immediately. "It is my belief that the initial responders did not recognize the scene as a potential crime scene,” Det. Al Cruise of the Seattle Police Department wrote in his review.
The Alaska Senate has passed a bill requiring insurance coverage for autism spectrum disorders.
SB74 passed 14-5 Wednesday. Minority Leader John Coghill served notice of reconsideration, meaning the bill could be voted on again before going to the House.
Coghill was among the dissenting votes. He had tried unsuccessfully to amend the bill to replace the coverage mandate.
Sen. Johnny Ellis, the bill's lead sponsor, said the amendment would render the bill essentially toothless.
At the State Journal (WV) Whitney Burdette reports on the West Virginia bill to clean up the insurance mandate:
Parents of children with Autism Spectrum Disorder can breathe a little easier now that the West Virginia House of Delegates has passed a bill regarding insurance coverage for those children.
House Bill 4260, which passed unanimously, cleans up technical language in a bill passed by the Legislature last year and signed into law by Gov. Earl Ray Tomblin. However, insurance companies argued that the $30,000 yearly coverage for autism therapies also applied to any medical coverage an autistic child may need, from illnesses to broken bones, said Delegate Ralph Rodighiero, D-Logan, the father of an autistic child.
"Its' like if you read the Bible, you'll have two or three different views of it," he said at Feb. 13 event at the Capitol to lobby in support of the bill. "So what we've got to do is make it more black and white, and that's what we're in the process of doing right now." ...
Delegate Denise Campbell, D-Randolph and mother of an autistic child said at the event that she is angry the insurance companies care more about their bottom lines than the well-being of children.
Note that in this state, as in others, key legislators are autism parents.
The issues connected to continued increasing numbers of people diagnosed with autism spectrum disorders and the growing need for critical services and supports - widely referred to as the “autism epidemic” – is the focus of two important public meetings this week – and also a key part of the subject matter and discussion of two other meetings also this week. February 22nd - Senate Select Committee on Autism and Related Disorders Informational Hearing The first meeting this week with the sole focus on persons with Autism Spectrum Disorders is an informational hearing by the State Senate Select Committee on Autism and Related Disorders, chaired by Senate President Darrell Steinberg (Democrat – Sacramento, 6th State Senate District), scheduled for February 22, Wednesday, from 10:00 AM to 12:30 PM at the State Capitol in Room 3191, on the subject of “Technology and Autism Spectrum Disorders” and how the use of technology – including “telehealth” can expand access and improve services for children and adults with that disorder and their families. For more information about the select committee go to the committee website at: http://autism.senate.ca.gov/ The issue is of particular importance with the State facing an on-going budget shortfall of close to $10 billion, and the Department of Developmental Services, the state agency that funds many of the community-based services through the 21 non-profit regional centers, used by children and adults with autism spectrum disorders, facing a $200 million reduction in State general fund spending to the developmental services budget in the 2012-2013 State Budget year, proposed by Governor Brown. February 23rd - Department of Managed Health Care Autism Task Force To Help Implement Autism Health Insurance Mandate Bill The second meeting with a sole focus on people with autism spectrum disorders is the meeting of the Department of Managed Health Care’s Autism Advisory Task Force, scheduled to meet February 23rd, Thursday from 10:00 AM to 4:00 PM, at the Sacramento Convention Center, 1400 J Street, Sacramento, CA (two blocks from the State Capitol). The public can attend the meeting physically or listen in and make public comments by calling in on the following toll-free number: 1 (800) 309-2350, Conference ID: 288476 (spells AUTISM). That task force is required by the passage and enactment of SB 946 by Sen. Steinberg, to help shape the implementation, effective July 1, 2012, of the new state law that will require private health insurance companies and health plans to cover certain behavioral intervention therapies for children and adults with autism and related disorders. The provisions of SB 946 will remain in effect until June 30, 2014 unless extended by the Legislature and Governor. The requirements or mandates in SB 946 are also linked to a not yet determined list of “essential health benefits” – meaning the minimum benefits a health plan or insurance must provide under the federal health care reform act – that the states and the federal government still must finalize and approve. February 23rd and February 24th - Mental Health Informational Hearing and DDS Budget Workgroup Meeting Also Impacts People with Autism and Their Families Also this week, on February 23rd, Thursday morning, upon adjournment of the Assembly floor session at the State Capitol in Room 4202, though not the focus, is an informational hearing by the Assembly Select Committee on Disabilities, chaired by Assemblymember Wes Chesbro (Democrat – Eureka, 1st Assembly District) dealing with community-based mental health issues – a subject matter that impacts thousands of children and adults with autism spectrum disorders who also have mental health needs. See below for further details about this hearing and separate CDCAN Report. The final meeting this meeting that has some impact on people with Autism Spectrum Disorders is the Department of Developmental Services budget stakeholder workgroup meeting, scheduled for February 24th, Friday from 10:00 AM to 4:00 PM in Oakland, the fifth in a series of six meetings being held in 6 different cities across the State. About 45 to 50 persons including people with developmental disabilities who receive services or supports, family members, representatives from a wide range of provider and advocacy groups were appointed by various regional and statewide associations and advocacy organizations by an invitation from the Department of Developmental Services to receive information from the department on current levels of spending, and to provide any input or questions regarding the Governor’s proposed $200 million reduction in State general fund spending for the 2012-2013 State Budget year. This proposed reduction number – and any actual cuts proposed for programs or services – will need the approval of the Legislature. This proposed reduction is in addition to the $100 million cut in State general fund spending to the current 2011-2012 State Budget that went into effect in January as a result of the State budget “trigger cuts” being pulled due to lower than expected revenues. The Department of Developmental Services indicated that the it can achieve for the 2011-2012 State Budget year the $100 million reduction through various higher than expected budget savings and other measures that do not require actual cuts to programs or services.
Do sheltered workshops enhance employment outcomes for adults with autism spectrum disorder? Robert Evert CimeraKent State University, Ohio, USA Paul WehmanVirginia Commonwealth University, Richmond, Virginia, USA Michael WestVirginia Commonwealth University, Richmond, Virginia, USA Sloane BurgessKent State University, Ohio, USARobert Evert Cimera, 405 White Hall, Kent, Ohio 44242, USA. Email:rcimera@kent.edu
Abstract
This study investigated whether sheltered workshops help prepare individuals with autism spectrum disorder (ASD) for competitive employment within the community. Two groups of individuals were compared: (a) 215 supported employees who were in sheltered workshops prior to entering supported employment and (b) 215 supported employees who were not in sheltered workshops. Individuals from both groups were matched based on their primary diagnosis, secondary diagnosis (if present), and gender. Results showed that there were no differences in rates of employment between these two groups. However, individuals who participated in sheltered workshops earned significantly less (US$129.36 versus US$191.42 per week), and cost significantly more to serve (US$6,065.08 versus US$2,440.60), than their non-sheltered workshop peers. Results presented here suggest that individuals with ASD achieve better vocational outcomes if they do not participate in sheltered workshops prior to enrolling in supported employment.
IT’S nearly two weeks since psychologist Tony Humphreys sparked outraged by saying children on the autism spectrum were shutting down because of an "absence of expressed love" from their parents.
My first reaction was inarticulate rage. Yes, I have a child in the autism spectrum. Yes, I love him to bits. Yes, I show it. However, as the rage dies, I realise that Humphreys’ blunder is a symptom of a much wider malaise: Traditional psychology is defending its territory. For over a century, at least since Freud, the whole of Western society has become accustomed to seeing mental dysfunction as part of a story. Much like a detective novel, the story has at its core a terrible secret. You extract the secret and you have cured the patient.
...
I was told: "Here we believe that every issue comes from inside the family." [emphasis added]
Remember that you were paying for all this: Two years of probing in the wrong place when an autism diagnosis should take a maximum of six months.
CLINICAL PSYCHOLOGIST Dr Tony Humphreys has reiterated controversial comments he made in an article published in the Irish Examiner last week linking parenting with the development of autism.
In the article, Humphreys suggested that a link lay between autism and parents not expressing love and affection to their young children. The article has been criticised by the Psychological Society of Ireland and Irish Autism Action, and it has since been removed from the Examiner site.
Speaking to RTÉ’s Claire Byrne on the Marian Finucane Show today, Humphreys said that children communicate all the time. If we respond to how children communicate and pick up what they’re trying to express, then they feel secure and continue to communicate, he said.
However, if we don’t, then children “wisely” shut down and stop communicating.
Health Minister James Reilly has described recent comments made by clinical psychologist Dr Tony Humphreys about autism as "utterly outrageous". Dr Humphreys has been severely criticised for his article in the Irish Examiner which gave the impression parents were to blame for their child’s condition. Speaking to TV3 yesterday, Dr Reilly, who has a 25-year-old autistic son, said the hurt caused by Dr Humphreys was "astonishing". "Well, it was utterly outrageous. The hurt that he has caused people is absolutely astonishing. I heard him on the radio the other day and I thought he compounded it by saying ‘I thought this was a good news story that parents wouldn’t have to worry or feel guilty about passing on their bad genes to their children’. "What? Another utter insult to parents and, you know, I’ll say this to parents, let no one set a limit on your child’s horizon. Experts will come and experts will go, but you know your child and you know what your child needs and you know the help they need and keep fighting. We’ll support them," Dr Reilly said
ON JANUARY 26th last, a court in the French town of Lille ordered that a documentary film be censored and removed from the internet.
The film, entitled The Wall, by Sophie Robert, critically examined the current dominant understanding and treatment of autism in France, which is founded on outdated and redundant theories of psychoanalysis.
Robert interviewed 27 psychoanalysts, three of whom later sued her, claiming they were misrepresented in the film. I have watched the documentary and so far as I can judge, the views of all of those interviewed are consistent with the psychoanalytic model that sees autism as being caused by a distorted relationship between the affected child and the mother. There is no objective evidence to support this viewpoint.
...
Ideologies can give rise to dire consequences and this is evident in the experiences of many French children with autism. In contrast to most other Western countries, it is claimed that up to 80 per cent of them do not attend school. In 2004 the Council of Europe condemned France for failing to provide appropriate education for children with autism.
The briefing was organized by Reps. Ander Crenshaw (R-FL), Chris Van Hollen (D-MD), and Cathy McMorris Rodgers (R-WA) all cosponsors of HR.3423, the House version of the Achieving a Better Life Experience (ABLE) Act. A panel of disability experts, including Stuart Spielman, senior policy counsel with Autism Speaks, addressed the briefing.
The Achieving a Better Life Experience Act would level the playing field for individuals with autism (and other disabilities) and their families to save for disability-related expenses. Just as families can put away savings in tax-exempt accounts for children to go to college, the ABLE Act would allow such accounts for individuals with disabilities to cover their future education, housing, transportation and related expenses. ABLE Accounts would resemble existing 529 college savings plans and would supplement, not replace, benefits provided through Medicaid, private insurance or employment. ...
John Ariale, Rep. Crenshaw’s chief of staff, said the bill was drafted so that SSI and Medicaid benefits would not be negatively impacted by opening an ABLE account. If the account balance reaches $100,000, SSI benefits would be suspended, he said. SSI benefits would resume if the account balance drops below $100,000. ...
Qualified disability expenses under ABLE would include: school tuition and related educational materials; expenses for securing and maintaining a primary residence; transportation; employment supports; health prevention and wellness costs; assistive technology and personal support; and various miscellaneous expenses associated with independent living. Eligibility would extend to any individual who is receiving supplemental security income benefits or disability benefits under Title II of the Social Security Act, or “who has a medically determined physical or mental impairment, which results in marked and severe functional limitations” that can be verified by a physician.
DSM 5 has suddenly become a star press attraction. In just the last three weeks, more than 100 news stories featuring DSM 5 appeared in major media outlets located in more than a dozen countries. (For a representative sample see Suzy Chapman's post on Dx Revision Watch.) The explosion of interest started with a flurry when The New York Times published two long DSM 5 articles and three DSM-5-related op-ed pieces, all within a few days. An unrelated press conference in London then generated a widely distributed Reuters story and also many independent pieces. Several other reporters had also been working on their own DSM 5 stories that just happened to arrive at the same time.
The intense press scrutiny of DSM 5 is really just beginning. I know of at least 10 additional reporters who are preparing their work now for publication in the near future. And many of the journalists whose articles appeared during these last few weeks intend to stay on this story for the duration -- at least until DSM 5 is published, and probably beyond. They understand that DSM 5 is a document of great individual and societal consequence -- and that its impact and risks need a thorough public airing.
According to [Fred] Volkmar's study, to be published in April in the Journal of the American Academy of Child and Adolescent Psychiatry and online later this month, about one-fourth of those diagnosed with autism would not meet the new criteria and nearly three-fourths of those with Asperger's also would not be diagnosed. Also, 84 percent of those diagnosed with Pervasive Developmental Disorder-Not Otherwise Specified also would no longer meet the criteria.
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Dr. Deborah Fein, a neuropsychologist and psychology professor at the University of Connecticut, has mixed feelings about the proposed new criteria.
"The point about collapsing everything into the autism spectrum disorder, I do think that makes sense because I don't think there's adequate evidence that there's a significant difference between them."
Fein said she has her doubts that the effect would be as dramatic as Volkmar's study suggests. "I think he was looking at a particular slice of the pie," she said.
"The population I'm most concerned about is toddlers."
A study that she recently worked on found that 20 percent to 25 percent of the toddlers currently diagnosed as having Autism Spectrum Disorder would not qualify under the new criteria. Many of these children would likely develop additional autism-related symptoms a few years later, as is common, and then meet the criteria.
But by that time, she said, they would have missed out on a few years of services, and early intervention is crucial in treating autism.
Parents and psychologists fear the changes to the diagnostic criteria are driven by an American government wanting to reduce the rate at which autism is diagnosed - now one in 100 - so as to reduce the cost of supporting services which help children with an autism spectrum disorder (ASD) fit into society, and the classroom.
Specialists don’t rely solely on the DSM to diagnose autism, adds Dr. [Vikram] Dua. Instead, they use a variety of assessment tools in multiple sessions with a patient to determine whether an individual has autism or a cluster of disorders with similar traits. In clinical practice, he says, “I don’t know if [the DSM-5] is going to change things too much.”
But Leah Miltchin, president of the board of directors for Autism Ontario, notes that in places where diagnostic services are less available, general practitioners turn to the DSM. “I’ve heard of people who have just taken their child to the family doctor and the family doctor says, ‘Oh yeah, he has PDD-NOS,’ and kind of sends them on their way.”
Ms. Miltchin says the onus will be on the medical community to be vigilant about applying the new diagnostic criteria – and on policy makers to “not just pick and choose who receives services and who doesn’t.”
The City of Tonawanda is now moving forward with a plan to install a special safety warning sign for motorists on a residential street to help protect a child with autism.
A sign similar to those seen on playgrounds will be placed on Frederick Road at the request of Chuck Gilbert, whose child has autism.
Urinary mercury concentrations are used in research exploring mercury exposure. Some theorists have proposed that autism is caused by mercury toxicity. We set out to test whether mercury concentrations in the urine of children with autism were significantly increased or decreased compared to controls or siblings.
Methods
Blinded cohort analyses were carried out on the urine of 56 children with autism spectrum disorders (ASD) compared to their siblings (n = 42) and a control sample of children without ASD in mainstream (n = 121) and special schools (n = 34).
Results
There were no statistically significant differences in creatinine levels, in uncorrected urinary mercury levels or in levels of mercury corrected for creatinine, whether or not the analysis is controlled for age, gender and amalgam fillings.
Conclusions
This study lends no support for the hypothesis of differences in urinary mercury excretion in children with autism compared to other groups. Some of the results, however, do suggest further research in the area may be warranted to replicate this in a larger group and with clear measurement of potential confounding factors.
Pediatricians fed up with parents who refuse to vaccinate their children out of concern it can cause autism or other problems increasingly are "firing" such families from their practices, raising questions about a doctor's responsibility to these patients.
Medical associations don't recommend such patient bans, but the practice appears to be growing, according to vaccine researchers. In a study of Connecticut pediatricians published last year, some 30% of 133 doctors said they had asked a family to leave their practice for vaccine refusal, and a recent survey of 909 Midwestern pediatricians found that 21% reported discharging families for the same reason.
By comparison, in 2001 and 2006 about 6% of physicians said they "routinely" stopped working with families due to parents' continued vaccine refusal and 16% "sometimes" dismissed them, according to surveys conducted then by the American Academy of Pediatrics.
The bill has been refined to focus on children between the ages of 2 and 6 with up to 500 children on Medicaid, several hundred who are not on Medicaid (and may be privately insured) and several dozen who are on the Public Employees’ Benefit and Insurance Program.
Elected officials are in negotiation with insurance companies about the possibility of contributing to funding. Rep. Ronda Rudd Menlove, R-Garland, the sponsor of HB272, has asked for $6 million in Medicaid dollars.
“Even at 750 we still would be missing some children,” she said, noting that Utah’s population of autistic children is more than 2,000.
The House Judiciary Committee had advanced the bill last month. It heads to the full House of Delegates for a vote on passage.
Lawmakers agreed last year to require insurers to cover applied behavioral analysis. This treatment is considered critical for many children diagnosed within the autism spectrum of neurological disorders.The pending bill makes clear that yearly and monthly caps on insurance benefits apply only to applied behavioral analysis. Insurance companies argue the limits apply to all autism-related treatment. The bill also fixes technical errors that weren't caught when the 2011 law passed.
Insurance lobbyists have come forward to claim that the change in the final legislation was not in error, that it was always the intent of the bill to include ALL autism treatment under a $30,000 cap. However, the fiscal note summary prepared by these same lobbyists last year states differently, reading "The original legislation has been amended to cover applied behavior analysis in an amount not to exceed $30,000 per individual for three consecutive years, then in an amount not to exceed $2,000 a month."
Near tears, a Merrimack woman pleaded with Senate budget writers yesterday not to end state health insurance mandates that have helped her 4-year-old autistic son regain his functions.
"Please. Stand up for me and my children, and do not touch what little hope and security we have left," said Christine Mostrom, who has two autistic children. "Do not turn away from New Hampshirehttp://www.autismpolicyblog.com/2011/02/repealing-mandate-in-new-hampshire.html's mothers. I urge you to stand in the gap, as we do for our children."
Mostrom and many others testified against Senate Bill 150, which would allow out-of-state insurance companies to sell health insurance in New Hampshire. The bill's prime sponsor, Senate Majority Leader Jeb Bradley, R-Wolfeboro, said he shares the concern about maintaining state insurance mandates, but is also concerned about the limited competition in New Hampshire among insurance providers.
"We have among the highest insurance rates in the country," Bradley said. "We need to get more people into the system in order to lower rates."
A new study from the Infant Brain Imaging Network, which includes researchers at the Center for Autism Research at The Children's Hospital of Philadelphia(CHOP), found significant differences in brain development starting at age 6 months in high-risk infants who later develop autism, compared to high-risk infants who did not develop autism.
"It's a tremendously exciting finding," said Sarah Paterson, PhD, director of the Infant Neuroimaging Lab at CHOP's Center for Autism Research. "We found that the brains of the children who developed autism were markedly different even prior to the onset of behavioral symptoms of autism. Thus, our findings, while requiring replication, are a very important first step towards identifying a biomarker for autism risk. This would enable specialists to diagnose autism much earlier than what is currently possible through behavioral observations."
The study also suggests that autism does not appear suddenly in young children but instead develops over time during infancy, note the authors. Intensive early intervention has been shown to improve outcomes in children with developmental delays and autism.
"This research raises the possibility that we might be able to intervene even before a child is 6 months old, to blunt or prevent the development of some autism symptoms," said Paterson.
The rate of diagnosis for autism spectrum disorders (ASD) is the same among all racial groups — one in 110, according to current estimates. However, a study by a Florida State University researcher has found that African-American children tend to be diagnosed later than white children, which results in a longer and more intensive intervention.
The reasons for later diagnoses include a lack of access to quality, affordable, culturally competent health care, according to Martell Teasley, an associate professor in Florida State's College of Social Work who has conducted a comprehensive review of researchliterature on autism and African-American children. In addition, the stigma attached to mental health conditions within the black community contribute to misdiagnoses of autism, and underuse of available treatment services.
"There are no subjective criteria for diagnosing autism. Only brain scans can truly provide appropriate diagnoses, because we are dealing with biological and chemical imbalances in the brain,"* Teasley said. "Not every child is going to have access to this kind of medical evaluation, particularly those who are indigent and don't have health care funding."
Teasley examined ASD diagnosis and treatment strategies, and their effect on African-American families, in "Autism and the African-American Community," a paper published in a special issue of the journal Social Work in Public Health (Vol. 26, Issue 4, 2011) that dealt with health-care policy issues in the black community related to the human genome. Teasley co-wrote the paper with Ruby Gourdine, a professor of social work at Howard University in Washington, D.C., and Tiffany Baffour, an associate professor of social work at Winston-Salem State University in North Carolina.
It has been over twenty years after the passage of the Americans with Disabilities Act, but we all know that there is still much work to be done to improve the employment picture for people with disabilities. Over the next week, you have an opportunity to take action towards making that difference. The Department of Labor's Office of Federal Contract Compliance Programs (OFCCP) has proposed new regulations strengthening Section 503 of the Rehabilitation Act, which requires federal contractors to engage in affirmative action to hire people with disabilities. The proposed regulations would set a target utilization goal of people with disabilities working for the company which contractors would need to work towards meeting. The regulations also consider creating a more specific sub-goal, requiring contractors to focus affirmative action on those with the greatest history of exclusion from the workforce. Section 503 has been law for decades, but was never meaningfully enforced - but now the proposed regulation promises to change that, applying the same common sense rules of the road as already exist for affirmative action on the basis of race and gender. Unfortunately, many in the contractor community are writing in to oppose the regulations. We need you to speak up!Here's what you can do:
Once you're at the regulation and have taken the time to review it if you are so inclined, click on the Submit a Comment button on the right side of the screen.
Fill out your contact information and provide your comments. We've prepared three major points we hope that you'll emphasize:
I support the Office of Federal Contract Compliance Program's proposed regulation strengthening Section 503 of the Rehabilitation Act and adding a utilization goal to hold contractors accountable for hiring people with disabilities.
I urge OFCCP to move forward with their proposal, mentioned as under consideration in the Notice of Proposed Rulemaking, to establish a sub-goal for individuals with targeted disabilities with the greatest history of exclusion from the workforce. I urge OFCCP to implement such a sub-goal and to include the autism spectrum and other developmental disabilities as within the sub-goal's "targeted disability" category.
I urge OFCCP to clarify in the Final Rule that contractors should only be able to count individuals in integrated employment settings towards meeting their affirmative action obligations, not individuals employed through subcontracts to sheltered workshops.
Together, we can make a difference for the employment picture of people with disabilities. Remember, we have only until February 21st, 2012 to submit comments - just one more week! Make sure that our voices are heard.
House Republicans are proposing a pilot program they're calling "a Utah solution" to the issue of whether insurance coverage for autism should be mandated.
The program, outlined during Tuesday's House GOP caucus meeting, would serve some 350 autistic children ages 2 to 6 whose parents don't have insurance or are covered by either the Public Employees Health Program or Medicaid.
Autism "has become an important priority for us," said House Majority Assistant Whip Ronda Menlove, R-Garland, calling the new language being drafted for HB272 "a great alternative to a mandate."
Menlove is sponsoring both HB272 and another bill, HB69, that mandates insurance companies cover autism. She said her preference is for the pilot program, acknowledging that lawmakers are feeling pressured to find a way to help families with autistic children.
There's interest from private insurers in helping to pay for the pilot as "a great alternative to a mandate," she said. "It's very encouraging."
Just how much the pilot program will cost remains to be seen. Menlove said she wants a total of $6 million from the state for the two-year program. "I'm a person who's going to think big," she said. "But I'm also realistic."
The Charleston Gazette reports on parents seeking a change in West Virginia's new mandate. Autism dad Wally Aman tells the paper that the insurance industry pulled a last-minute switch in the bill:
"The unanimous passage of the autism bill last year gave parents who have children with autism hope," Aman said. "But because of a last-minute change in the wording of the bill, we have insurance for autism therapy that won't pay for autism therapy. We just want what our children were promised."
The new law allows health insurance companies to cap the amount they reimburse families for all autism services at $30,000 a year.
A previous version of the legislation put a $30,000 cap on only on behavior services -- the treatment considered most effective for autism.
Parents with autistic children typically spend more than $30,000 a year on "applied behavior analysis," or ABA, Aman said. So the cap forces families to pay out of pocket heir children's speech, occupational and physical therapies, and prescription medications -- or drop those services altogether. This year, Aman and fellow autism advocates are supporting a "clean-up" bill (HB4260) that would fix last year's law and allow autistic children to receive expanded benefits.
"This year's fight is to get back what they promised us last year," said Cindy LeGrand, a speech therapist with Bright Futures Learning Services in Charleston. "The language was modified at the 11th hour last year."
Health insurance companies in West Virginia oppose modifying the $30,000 cap on all autism services, saying last year's legislation was carefully negotiated and passed.
Increase Funding for the Education of Children with Disabilities. The Budget provides $11.6 billion for the Individuals with Disabilities Education Act (IDEA) Grants to States to provide a high quality education and help offset State and local education costs for children with disabilities. The Budget also provides a $20 million, or 5 percent, increase for the IDEA Infants and Families Program to provide the youngest children a good start. In addition, the Budget provides $30 million, a $28 million increase over 2012, for PROMISE (Promoting Readiness of Minors in SSI), a four agency joint pilot program, to fund and evaluate innovative approaches to improving outcomes of children receiving Supplemental Security Income and their families. Encourage Workforce Innovation to Improve Outcomes for People with Disabilities. The Budget provides $125 million to the Departments of Education and Labor for a Workforce Innovation Fund to support reforms of the workforce system, including projects that improve education and employment outcomes for individuals with disabilities. The Vocational Rehabilitation program will contribute $10 million, and use its expertise to help ensure that the Fund invests in innovative programs and evidence-based practices to provide high-quality employment services to individuals with disabilities, including those with significant disabilities. The Budget also provides authority for the Department of Education to use unspent Vocational Rehabilitation State Grants funds to support innovative projects that would focus on improving outcomes for individuals with disabilities. Support Workers with Disabilities. The Budget provides $24 million to the Department of Labor for the Disability Employment Initiative, which awards grants to build the capacity of One-Stop Career Centers to serve individuals with disabilities. The Budget also proposes a new Disability Insurance Work Incentives Simplification Pilot to make the Social Security work rules more straightforward and allow beneficiaries more flexibility to try to work without fear of losing their benefits. Reduce Social Security Appeals Hearing Backlog. Disability programs are at the forefront of the Social Security Administration’s (SSA’s) operations. The Budget maintains services to the public, which SSA provides through multiple avenues, including the Internet, over the phone, and in person at hundreds of local offices. In addition, the agency will continue to increase efficiency by holding hearings via video conference for areas of the country with the most cases and increasing the use of online services. By completing approximately 960,000 hearings in 2013, the average processing time will be reduced to SSA’s target level of 270 days in September 2013. Support Disability Research. The Budget provides $107 million for the National Institute on Disability and Rehabilitation Research (NIDRR). NIDRR conducts comprehensive and coordinated programs of research and related activities to maximize the full inclusion, social integration, employment, and independent living of individuals with disabilities of all ages. NIDRR will continue to support a cloud computing initiative that uses the internet infrastructure to improve technology access through the development, implementation, and delivery of mechanisms that will provide on-demand accessibility for everyone who faces technology accessibility barriers. Strengthen Anti-Discrimination Enforcement. Even in tough budget times, the substantial investments that have been made by the Administration to strengthen civil rights enforcement against racial, ethnic, sexual orientation, disability, religious, gender, and gender identity discrimination continue in the 2013 Budget. The Budget proposes an increase for the Community Relations Service in the Department of Justice to fight hate crimes and provides a $14 million, or 4 percent, increase over the 2012 enacted level for the Equal Employment Opportunity Commission (EEOC), which is responsible for enforcing Federal laws that make it illegal to discriminate against a job applicant or an employee. This investment will allow EEOC to add staff to reduce the agency’s backlog of private-sector discrimination charges. Provide Housing for Persons with Disabilities. The Budget provides a total of $150 million for the Housing for Persons with Disabilities Program. Even in tough fiscal times, the Budget continues to invest in the expansion of this program and includes $54 million to fund approximately 1,900 additional units awarded through states for partnerships integrating health care and affordable, supportive housing for extremely low-income persons with disabilities in community-based settings. ... Improve Effectiveness of Disability Programs. The Administration will conduct a Government-wide review of ways to improve the effectiveness of disability programs through better coordination and alignment of priorities and strategies. This will build on previous efforts that have sought to better coordinate policies and programs across Federal, State, and local governments, the service provider community and employers to improve the effectiveness and efficiency of programs serving individuals with disabilities. While some significant coordination efforts have proven successful, the Administration expects collaboration and innovation to improve efficiency and effectiveness as well as reduce costs even further. The focus of the upcoming review will be to work with agencies authorized to run disability-specific programs and those programs that impact and affect people with disabilities to explore how they can achieve better results for this population by sharing data; defining shared objectives; coordinating goal-setting, integration, implementation and measurement to track progress; and improving management response time when adjustments are needed. Support the Rights of People with Disabilities Internationally. The Budget provides funding to support the newly-created Disability Office at the Department of State. The office, which is part of the Bureau of Democracy, Human Rights, and Labor, is critical to the Administration’s efforts to: develop a comprehensive strategy to promote the rights of persons with disabilities internationally; ensure that foreign assistance incorporates persons with disabilities; ensure that the needs of persons with disabilities are addressed in international situations; and conduct public diplomacy, including with civil society, on disability issues.
