Tuesday, September 2, 2014

Screening and Followup

A number of posts have discussed screening. Shaun Heasley reports at Disability Scoop:
Kids with developmental delay are far more likely to receive the early intervention services they need if pediatricians follow up after conducting routine screenings, researchers say.
In a study of clinic patients at a large children’s hospital in Colorado, researchers found that simply performing regular developmental screenings was often not enough to ensure kids got help.
Even after implementing standardized screening procedures for doctors, just 20 percent of the children flagged as having possible delays were referred to community resources including early intervention.
However, when the clinic began aggressively following up with phone calls in cases where children were found to have possible delays, referrals increased to 50 percent, the study found.

The abstract, from Pediatrics:
 Improving Developmental Screening Documentation and Referral Completion
Ayelet Talmi, PhD, Maya Bunik, MD, MSPH, Ryan Asherin, MA, Michael Rannie, RN, MS, Tyler Watlington, MD, Brenda Beaty, MSPH, and Stephen Berman, MD
BACKGROUND AND OBJECTIVES: Screening, early identification, and referral improves outcomes for young children at risk for developmental delays. Effective developmental screening processes should include efforts to ensure referral completion and documentation of evaluation results and service eligibility in the child’s medical record. Our objectives were to improve provider documentation of actions taken after an abnormal developmental screening result and increase Early Intervention (State Part C) referrals.
METHODS: Various strategies including an electronic medical record template, monthly clinical informatics reporting, and a phone follow-up after an abnormal screening result were implemented to enhance provider documentation of screening results and improve referral actions and outcomes.
RESULTS: Of the children eligible for screening (n = 3023), 2610 (86%) were screened, with 382 (15%) scoring in the abnormal range. With phone follow-up, 50% of the abnormal screenings were referred to community resources, including 43% to Early Intervention (EI), in contrast to 20% community referrals and 13% EI referrals with the screening template only (P < .0001). Provider documentation of EI outcomes increased when screening templates and follow-up calls were implemented together (31%) as compared with using the screening template alone (15%).
CONCLUSIONS: Enhanced documentation of developmental screening efforts using screening templates and clinical informatics reporting in combination with phone follow-up after an abnormal screening result improved developmental screening outcomes, including referral rates, completed evaluations, and provider documentation of EI services. Such strategies can be effectively used in pediatric primary care settings to improve screening processes and ensure that young children access appropriate services.

Monday, September 1, 2014

Services in Maryland

Lawyer and autism dad Robert McCarthy writes at The Washington Post:
The Maryland Medicaid waiver program, once you finally get your name on the list, is a generous program, but it is like throwing an on/off switch. My family received no state-funded services until our son got off the waiting list. Then he got very generous services through the waiver program, which basically means the government began paying for what my wife and I previously paid. The catch is that many service providers do not accept Medicaid reimbursements because the rates are low, the procedures are onerous and the reimbursements are delayed.

As a lawyer in Montgomery County, I handle a great many cases involving disabled children and adults, and even I frequently get confused by the process. Imagine an average parent trying to navigate the disjointed system that exists.

Advocates for the disabled did harm to the provision of needed services for highly disabled persons. That advocacy has led to the closure of most residential institutions in Maryland that would care for disabled adults, leaving these people to compete for one of the few programs that remain, live on the street or remain with parents who do what they can in a virtually impossible situation.

I have seen the desperation of parents of special-needs children as they struggle with great demands and few services. This occurs at a great cost to families, and to society. I have seen situations in which parents deliberately had themselves classified as abusive and neglectful to push their children to the head of the line for services.

Sunday, August 31, 2014

Questions about a Study

An earlier post discussed allegations that CDC had covered up evidence linking vaccines and autism among African Americans. CNN reports:
A study published earlier this month concluded African-American boys are more at risk for autism if they're given the measles, mumps and rubella vaccine before the age of 2. The study author says researchers at the Centers for Disease Control and Prevention knew about the link in 2004 -- and covered it up. 
CDC researchers are standing by their original findings: that there is no link between autism and vaccination schedules. 
The new study was funded by the Focus Autism Foundation, which says it is dedicated to exposing the causes of autism, "focusing on the role of vaccinations." 
The study has since been removed from the public domain pending further investigation, according to Translational Neurodegeneration
In an online statement, the scientific journal said the paper had been removed "because of serious concerns about the validity of its conclusions." 
CNN first became aware of the study when an iReport was posted about its publication and the controversy surrounding it. iReport is CNN's user-generated news community.

Saturday, August 30, 2014

Science and Alternative Medicine

A number of posts have dealt with complementary and alternative medical treatments for autism. Scott Pomeroy writes at RealClearScience:
Why waste time and money testing medical treatments that defy the laws of physics and chemistry?
That's the pointed question posed by Drs. David Gorski and Steven Novella in a new op-ed published in the journal Trends in Molecular Medicine. To most, the answer is obvious: we shouldn't. But in the past decade, alternative medicines without any basis in science, like acupuncture, homeopathy, and chiropractic, have received hundreds of millions of dollars from the U.S. government, which, in turn, has been used to fund hundreds of randomized clinical trials.
Alternative medicine supporters insist that these trials are necessary to find out what does and does not work. That seems reasonable. But unlike proper scientists, they don't cast off that which evidence shows to be worthless. When a study's result is negative -- and almost all of them are -- they ignore it. And on the rare occasion when a study's result is positive -- however miniscule the effect may be -- they cling to it like there's no tomorrow. In the eyes of the alternative medicine proponent, more research will always be needed.

Friday, August 29, 2014

Sexual Victimization

Disability Scoop reports:
Adults with autism face a greater risk of sexual victimization than their typically-developing peers, researchers say, and a lack of education could be part of the reason why.
In a survey of adults with and without autism, 78 percent of those on the spectrum reported at least one instance of sexual victimization compared to less than half of their typically-developing peers.
People with autism were more than twice as likely to say that had been raped and over three times as likely to report unwanted sexual contact, according to findings published in the September issue of the Journal of Autism and Developmental Disorders.
For the study, researchers surveyed 95 adults with autism and 117 without, ages 19 to 43. Individuals were asked about unwanted sexual contact and their knowledge of contraception, reproductive health and other issues surrounding sexuality.

Thursday, August 28, 2014

The Pennsylvania Cliff

Jeff Hawkes writes at Lancaster Online:
"We always say at the age of 21 the (school) bus stops coming," said Nina Wall, who oversees the limited services for adults with autism in Pennsylvania.
Pennsylvania has more than 8,400 adults with autism, Wall said. Funding's available for 518.
[Travis] Rohrer waits on a slow-moving list while his parents fret.
Marie Mambuca with Pittsburgh-based ABOARD, an autism network sponsoring more than 60 support groups across the state, said she's inundated by calls from parents of adults and adults themselves wanting help.
"Moms and dads are saying, 'We're tired,' " said Mambuca, adding, "It's hard to raise a child with autism for 20-some years, and there's not a whole lot of options when they become adults."
In response to a reporter's inquiry, Lawrence George, director of the $26.5-million agency, said he could not speak about a specific client, but explained that state regulations limit BHDS's mental health services to those adults with specific severe illnesses, and autism is not included.
On Aug. 1, Philhaven discharged Rohrer from the day hospital, adding to his parents' worries that without ongoing help their son's compulsive and impulsive behaviors could lead to new trouble.

George at BHDS sympathizes. "There remains a significant funding gap (for adults with autism), and there are individuals who obviously need more than they're getting," he said.
Rohrer's story is not unique. The more than 8,400 adults with autism in Pennsylvania are the vanguard of the thousands of children in the pipeline who will need services after they finish school.
By 2020, the state projects, adults with autism will exceed 31,000.
Pennsylvania in 2008 began funding autism services for adults under a Medicaid waiver. The new state budget added funding in 2015 for 100 more adults, bringing the total to 518, or only 6 percent of the current estimate. The state projects spending $20.4 million in 2014-15. The average monthly cost per client last year was $3,878.

Wednesday, August 27, 2014

Conspiracy Theory

Phil Plait writes at Slate:
There's a conspiracy theory going around that the CDC covered up a link between autism and vaccines. From what I can tell, this conspiracy theory is on the same level as the one that NASA faked the Moon landings. And you know how I feel about that.

Perhaps you’ve heard about this CDC theory; it’s burning up on Facebook, Twitter, and other social media. The gist of it is that a “whistleblower” at the Centers for Disease Control and Prevention has revealed some hanky-panky done by researchers there to cover up a link between vaccines and autism found in a certain group of babies, and a new analysis supposedly shows this connection.

It’d be a compelling story, if it were true. However, it appears very strongly to be false. Since I am not an expert in the specifics, I direct you to two posts: "Did a high ranking whistleblower really reveal that the CDC covered up proof that vaccines cause autism in African-American boys?" by Dr. David Gorski at Science Based Medicine, and “Andrew Wakefield Tortures History” at Harpocrates Speaks. These, together with links therein, show to my satisfaction why this conspiracy claim is more heat than light. As the first post by Gorski shows, the "new analysis" fails for multiple reasons, including using small numbers for statistics (a big no-no), applying statistics incorrectly, and not even employing an actual statistician for the analysis. There are other very serious problems as well, all of which are laid bare in those posts.
Arturo Garcia writes at Raw Story:
Actor and anti-vaccine advocate Rob Schneider contacted California Gov. Jerry Brown’s office (D) claiming to possess documents showing that the Centers for Disease Control has hidden data showing Black children are at a particularly high risk of developing autism from vaccines.
According to the anti-vaccine site The Canary Party, Schneider stated in his letter to deputy legislative secretary Lark Park that he was “compelled” to share his proof of a CDC report the agency suppressed and “fraudulently changed.”
“One disturbing disclosure, AFRICAN AMERICAN CHILDREN were and still are THREE HUNDRED AND FIFTY PERCENT more likely to develop Autism under the current Vaccine MMR schedule,” Schneider wrote. “This according to the original CDC study in 2001.”
Schneider may have been referring to a 2004 letter to the CDC regarding a study of African-American children which was recently unearthed. Anti-vaccination activists say the letter proves that evidence of a link between the MMR (Measles-Mumps-Rubella) vaccine and autism was suppressed by the CDC. The agencysaid in a statement that the study’s results were due to issues with the sample and not a vaccine-autism link.