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Friday, February 24, 2017

Keep an Eye on the Affordable Care Act

The Politics of Autism includes an extensive discussion of insurance issues, including the impact of the Affordable Care Act.

At NPR, Michelle Andrews reports:
Since the 10 required benefits are spelled out in the Affordable Care Act, the law would have to be changed to eliminate entire categories or to make them less generous than typical employer coverage. And since Republicans likely cannot garner 60 votes in the Senate to do that, they will be limited in changes that they can make to the ACA. Still, there's room to "skinny up" the requirements in some areas by changing the regulations that federal officials wrote to implement the law.

Habilitative services
The law requires that plans cover "rehabilitative and habilitative services and devices." Many employer plans don't include habilitative services, which help people with developmental disabilities such as cerebral palsy or autism maintain, learn or improve their functional skills, via speech or occupational therapy or other support services. Federal officials issued a regulation that defined habilitative services and directed plans to set separate limits for the number of covered visits for rehabilitative and habilitative services. Those rules could be changed.
"There is real room for weakening the requirements" for habilitative services, says Dania Palanker, an attorney and assistant research professor at Georgetown University's Center on Health Insurance Reforms, who has reviewed the essential health benefits coverage requirements.
Mental health and substance use disorder services
The health law requires all individual and small group plans to cover mental health services and treatments for substance use disorders. In the regulations, the Obama administration said that means those services have to be provided at "parity" with medical and surgical services, meaning plans can't be more restrictive with one type of coverage than the other regarding cost sharing, treatment and care management.
"They could back off of parity," Palanker says.

Thursday, February 23, 2017

The Fry Case

The Politics of Autism,  I discuss court cases under the Individuals with Disabilities Education Act and other statutes.

Amy Howe writes at SCOTUSblog:
When Stacy and Brent Fry obtained a goldendoodle for their five-year-old daughter, E.F., in 2009, they could not possibly have imagined that they would find themselves, seven years later, at the U.S. Supreme Court. But that is exactly where they were at the end of October, listening to the justices debate their case. The case began as a dispute over whether E.F., who has cerebral palsy, could bring the dog, named Wonder, to kindergarten with her, but it eventually became a clash over a fairly technical question about the interaction among a group of laws intended to assist people with disabilities.
Today the court issued a unanimous decision in the Frys’ favor. It ruled that, when families like the Frys file lawsuits under the Americans with Disabilities Act or the Rehabilitation Act, which bar discrimination against both adults and children with disabilities, they do not need to first go through the administrative proceedings required by the Individuals with Disabilities Education Act, which ensures that children with disabilities receive the special education services that they need, unless the focus of the lawsuit is an allegation that the student did not receive the “free appropriate public education” guaranteed by the IDEA. Put another way, this means that a student who alleges that a school has discriminated against her because of her disability is not required to use the IDEA’s administrative proceedings simply because the alleged discrimination happened at school.

Wednesday, February 22, 2017

Legislation to Raise the Georgia Insurance Cap

The Politics of Autism includes an extensive discussion of insurance.

In Savannah, Cristina Tuso reports at WTOC-TV:
Georgia lawmakers are considering a bill that would expand insurance coverage for people by raising the required coverage age to 21.
Here’s the challenge families affected by Autism face, it is recommended that a person with Autism get 30 hours of therapy a week, and that will end up costing at least $30,000 a year to get a child the attention they need. This new piece of legislation would help cover those costs.
Experts at the Matthew Reardon Center in Savannah say the earlier a person can start therapy and the longer they can afford to do it, the better off and more independent they will be as adults.
Applied Behavioral Analysis therapy, ABA, asses a child, coming up with an individual education plan and then helping a child self-manage autistic behaviors.

"We get calls from parents of three-year old's who don't have the financials means to pay for therapy," said Patti Victor, Matthew Reardon Center President.
The current law only requires that insurance providers cover autism treatment services until the age of six. That coverage cap is the lowest in the country, which means that families that send their children to the Matthew Reardon Center in Savannah for specialized therapy, can't afford the help that their child needs.

WTOC-TV: Savannah, Beaufort, SC, News, Weather & Sports

Tuesday, February 21, 2017

Texas, Autism, Vaccines

Lena Sun reports at The Washington Post:
The group of 40 people gathered at a popular burger and fish taco restaurant in San Antonio listened eagerly to the latest news about the anti-vaccine fight taking place in the Texas legislature.
Some mothers in the group had stopped immunizing their young children because of doubts about vaccine safety. Heads nodded as the woman giving the statehouse update warned that vaccine advocates wanted to “chip away” at parents’ right to choose. But she also had encouraging news.
“We have 30 champions in that statehouse,” boasted Jackie Schlegel, executive director of Texans for Vaccine Choice. “Last session, we had two.”
Now they also have one in the White House.
President Trump’s embrace of discredited theories linking vaccines to autism has energized the anti-vaccine movement. Once fringe, the movement is becoming more popular, raising doubts about basic childhood health care among politically and geographically diverse groups.
Public health experts warn that this growing movement is threatening one of the most successful medical innovations of modern times. Globally, vaccines prevent the deaths of about 2.5 million children every year, but deadly diseases such as measles and whooping cough still circulate in populations where enough people are unvaccinated.

Monday, February 20, 2017

Trump's Nonsense debunks Trump's claims that there has been a tremendous increase in autism, pointing out that most of the apparent increase results from awareness and changing criteria.
But is there any room left for an actual increase in the prevalence of ASD?
Potentially. For example, researchers have also found associations between both the mother’s and father’s age and risk for ASD — that is, the older the parents, the greater the chance of having a child with ASD. And women in the U.S. are having children later today compared to 2000, according to the CDC. However, we couldn’t find similar data on U.S. men. We also couldn’t find a study that quantified how much increasing parental ages could be contributing to increased prevalence of ASD in the U.S.
If Trump had said that there has been a “tremendous” increase in the number of reported cases of ASD, that would be true.
But it’s unclear, at best, that there’s been a “tremendous” increase in the actual number of children who exhibit ASD’s symptoms.

Research suggests that broadened diagnostic criteria, greater awareness and diagnostic recategorization of ASD with similar disorders may account for a portion, if not the majority, of this reported increase.

Currently, the CDC says the “increase in ASD diagnosis is likely due to a combination” of the these factors and an actual increase.
What is clear, however, is that there is no evidence to support any contribution by vaccines to the increase in reported prevalence of ASD, as Trump implied back in 2015.
An editorial in the Irish Times describes the benefits of vaccines.
But vaccines are under threat from a political source: US president Donald Trump is raising doubts about the safety and value of vaccines. Last week, immunologist Prof Kingston Mills of Trinity College Dublin spoke of the “Trump effect”, as the newly installed president spreads fear about vaccine safety over social media.
“President Trump has been tweeting about vaccines, making claims about links with autism,” Prof Mills said. “He has been adding further fuel to the fire that vaccines have side-effects that have not been proven.” Among the 20 vaccines that prevent life-threatening diseases are immunisations against deadly strains of meningitis, the congenital damage caused by rubella in expectant mothers, and the cancer-causing human papillomavirus (HPV).
HPV vaccine has the potential to reduce deaths from cervical cancer; however the uptake of the vaccine in the Republic has dropped to 50 per cent due to a campaign claiming it caused chronic fatigue syndrome. And while the putative link has not been proven, the negative publicity persists.
It is no coincidence Trump’s election campaign featured the disgraced doctor Andrew Wakefield, who was struck off the medical register in Britain after fraudulently claiming the MMR vaccine caused autism. The actor Robert de Niro and prominent campaigner Robert J Kennedy have called for a vaccine commission to be established. “Anti -vaxxers” are close to power in the US and could do untold damage to global health.

Focus Groups Look at Programs for Autistic Adults

When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. ... People in the disability community refer to this point in life as “the cliff.” Once autistic people go over the cliff, they have a hard time getting services such as job placement, vocational training, and assistive technology. IDEA entitles students to transition planning services during high school, but afterwards, they have to apply as adults and establish eligibility for state and federal help. One study found that 39 percent of young autistic adults received no service at all, and most of the rest got severely limited services.
Kaitlin H Koffer Miller, Mary Mathew, Stacy L Nonnemacher and Lindsay L Shea have an article at Autism titled Program Experiences of Adults with Autism, their Families, and Providers: Findings from a Focus Group Study."  The abstract:
A growing number of individuals with autism spectrum disorder are aging into adulthood. In the United States, Medicaid is the primary payer for services for adults with autism spectrum disorder, yet there are few funded programs that provide dedicated supports to this population. This study examined the experiences of adults with autism spectrum disorder in two Medicaid-funded programs in Pennsylvania through focus groups. Researchers conducted 20 focus groups with a total of 36 adults with autism spectrum disorder, 32 family members, 32 direct care staff, and 20 program administrators. Using thematic analysis, we identified three themes: training needs, community engagement and socialization, and employment. There was a need for additional training to meet the varying needs of program participants including co-occurring diagnoses, sexuality, and long-term planning. Adults with autism spectrum disorder prioritized more individualized community activities based on their interests. Finally, barriers to and strategies for successful employment were discussed. It will be crucial for policy makers to utilize the findings to inform program improvement and development based on the experiences of individuals impacted by these services and systems directly. Additionally, researchers should use the findings from this study to design interventions for adults with autism spectrum disorder as it includes their voices.
From the article:
This study has important implications for delivery of services to adults with ASD broadly. Staff, families, and adults with ASD identified training as a top priority. Areas of training needs identified are largely reflective of evolving research on adults with ASD. Supporting individuals across the spectrum of needs was a recurrent theme in the focus groups and reflects the existing literature base on the vastly different service needs between individuals with ASD, especially among those with and without ID (McCarthy et al., 2010; O’Brien and Pearson, 2004).
A powerful question that came up in focus groups with families and with participants was: what will happen to an adult with ASD after their parent, caregiver, guardian, or other essential family member passes away? According to the 2011 PA Autism Needs Assessment, 56% of parents and caregivers had no long-term plans for their child (of all ages) after they are no longer able to care for them. This statistic is startling given that of the adults with ASD sampled, about 77% live at home with their family or caregiver (Bureau of Autism Services, Pennsylvania Department of Human Services, 2011b). Another report replicated these results, finding that about 80% of adults with ASD have been reported to be living with their parent/caregiver and have no long-term plans or options for independent living or community integration (Reagor, 2010). Engaging in the long-term planning process is invaluable to avoid crises when adverse life events occur, such as the death of a caregiver.

Sunday, February 19, 2017

Autism as an Asset in the Workplace

In The Politics of Autism, I discuss the employment of adults with autism and other developmental disabilities. Many posts have discussed programs to provide them with training and experience.

At Fast Company, Lisa Rabasca Roepe writes:
In addition to Ernst & Young, other large companies are developing programs to recruit and retain employees with autism. For instance, SAP has a goal of hiring 650 employees with autism by 2020. So far, the company has hired 116 individuals with autism who range in age from 22 to 59, are located in 17 locations in nine different countries, and spread across 100 teams, says Jose Velasco, head of SAP’s Autism at Work program in the U.S. To help them succeed, SAP provides six weeks of pre-employment training, and once they are hired, they are supported by their manager, who has been given autism awareness training; an office mentor, who has volunteered to help and is from another work team; and a job and life skills coach, Velasco says. SAP and Ernst & Young are informally working with Microsoft and Hewlett-Packard to share best practices for hiring and retaining more employees with autism.
SAP and Ernst & Young have found that hiring employees with autism bring benefits. They provide a different perspective to problem solving and the creative process, Velasco says. Working with an employee diagnosed with autism can help you become a more effective communicator and manager, says Jamell Mitchell, an associate director at Ernst & Young who manages Briefer and several other employees with autism. "I have found myself pausing and saying, ‘I’m not as clear as I can be,'" he says, "and then taking the time to recraft a communication so it’s clear and I am hitting the key points."