ABLE Act Support

A release from Rep. Ander Crenshaw:

Congressman Ander Crenshaw (R-FL), Senator Robert Casey, Jr., bill co-sponsors, and disability advocates highlighted growing support for the Achieving a Better Life Experience Act (ABLE Act - HR 647/S 313) at a Capitol Hill press conference on Thursday, March 14. The bipartisan legislation - with over 100 House and Senate co-sponsors - aims to create an improved quality of life for individuals with disabilities through tax-free savings accounts.

House and Senate bill co-sponsors and self-advocates from the National Down Syndrome Society (NDSS) spoke at the press conference on the grounds of the United States Capitol on Thursday (3/14). They were joined by representatives from the disability advocacy community, including NDSS, Autism Speaks, and The Arc. With the Capitol Dome behind them, members of the group highlighted the road ahead for the bill and described an improved quality of life for individuals with disabilities through the legislation.

In addition to Crenshaw, Casey and other bill co-sponsors, John Anton, National Down Syndrome Society Self Advocate, spoke at the event. Anton, of Haverhill, MA, currently serves as an intern in the office of Congresswoman McMorris Rodgers.

A video in support of the legislation:

Tennessee Mandate Legislation

In Nashville, WKRN reports on Tennessee mandate legislation:

A state proposal that would require insurance companies to add more coverage for autism patients has hit a snag.

House Bill 1265 was introduced to Tennessee lawmakers this legislative session. The bill would require insurance companies to cover therapy for autistic kids and adults.

However, a vote on HB 1265 has been pushed back until next Wednesday.

The bill's sponsor, Representative Kevin Brooks (R-Cleveland) says it won't be easy to get HB 1265 passed.

Brooks said lawmakers needed time to meet with disability, business and insurance groups so at least a compromise could be reached for passage of the bill.

WKRN, Nashville News, Nashville Weather and Sports

Making Insurers Pay in California

Previous posts have discussed insurance regulation in California.  Yesterday, the state's insurance department issued a release:

Insurance Commissioner Dave Jones today announced that the Office of Administrative Law (OAL) approved the emergency regulations aimed at eliminating delays and denials of coverage for autism treatment. Commissioner Jones issued these emergency regulations to protect children diagnosed with autism and their families from the emotional, physical and financial harms caused by insurer denials or significant delays in autism treatment, which has reached crisis proportions in California.

"I am extremely pleased that the Office of Administrative Law has approved our emergency regulations," said Commissioner Jones. "These emergency regulations will ensure that insurance companies cover medically necessary treatment required by the Mental Health Parity Act and Senator Darrell Steinberg's autism treatment legislation. Autistic children and their families should now, without delay, receive the transformative treatment that will enable them to succeed in school, their families, and communities."

The California Mental Health Parity Act was intended to provide adequate private health insurance coverage and benefits for mental illnesses. The legislature found that autism is one of several severe mental conditions that are seriously disabling. Failure to provide adequate coverage in private health insurance policies significantly increases expenditures by state and local government for medical treatment, special education and other services.

Later laws, such as SB 946 (Steinberg), signed by Governor Jerry Brown in October, 2011, reconfirmed the mandate for health insurers and HMOs to provide behavioral health treatment for autism. This emergency regulation is expected to benefit thousands of California's children and families and save California taxpayers approximately $138.8 million to $197.8 million over the next year in costs that should properly be borne by insurers. These emergency regulations are the latest in a series of actions taken by Commissioner Jones to make sure autistic children can receive behavioral therapy treatment.

AP Stylebook

Many posts have discussed journalistic practice in light of the Newtown shooting. Kira Goldbenberg writes at The Columbia Journalism Review:

After Adam Lanza killed 20 children on December 14, a host of subsequent coverage of the Newtown, CT, massacre focused on whether or not he was mentally ill and, if so, how his illness may have affected his actions.

Most of the speculation centered on whether or not Lanza had autism—which is not a mental illness but often gets lumped in with them—leading to enraged pushback by advocates that (rightfully) resented the implication the developmental disorder causes violence. (A joint investigation between Frontline and the Hartford Courant reported that Lanza did have a diagnosis of Asperger’s syndrome.)

Turns out all this coverage was crafted with no official standards guiding how journalists should treat mental illness in their reporting—the Associated Press Stylebook, the main arbiter of style and usage in journalism, lacked an entry on mental illness until Thursday.

Autism figures prominently in the entry: 

Autism spectrum disorders. These include Asperger’s syndrome, a mild form of autism. Many experts consider autism a developmental disorder, not a mental illness

Insurance, Autism, and Georgia

In Atlanta, WXIA covers a hearing on Georgia mandate legislation:

 

The report includes comments by Senator Renee Unterman, a foe of the legislation.  Unterman is an insurance company employee.  See this page from her financial disclosure:

Amerigroup, in turn, belongs to WellPoint.

Two Cases of Restraint

Many posts have discussed the issue of restraint in schools and other settings.

WFLD in Chicago reports on a case of restraint in a hospital: Chicago News and Weather | FOX 32 News

KRIV in Houston reports on a case in a school: Houston weather, traffic, news | FOX 26 | MyFoxHouston

Trying to Revive the Georgia Mandate

Even though the Georgia mandate legislation appears to have stalled for the time being, autism advocates are pressing on.  The Gainesville Times reports:

The Georgia Senate Insurance and Labor Committee is scheduled to hold a hearing Monday on “Ava’s Law” that would require insurance companies and other health insurance plans to cover treatments for autism, including applied behavioral analysis.

The bill is named for Ava Bullard, an 8-year-old girl from Lyons with autism, whose mother, Anna, has advocated for expanded autism coverage.

Georgia is one of 18 states that doesn’t require insurance plans to cover autism treatments. Carpenter, other mothers and supporters are planning to show up at the state Capitol to show their support for legislation. But with just 10 days remaining in the legislative session, its chances of passing are dim.
...


Judith Ursitti, director State Government Affairs of Autism Speaks, an advocacy organization, said autism is a treatable condition and children with intensive therapy and early intervention can “lose” their autism diagnosis.

Ursitti plans on testifying before the Senate insurance committee Monday. The Special Advisory Commission on Mandated Health Insurance Benefits, created by Sen. Tim Golden, R-Valdosta, in 2011, will discuss autism legislation Tuesday. Golden, chairman of the Insurance Committee, created the commission to study the social and financial impact of legislation that mandates insurance benefits or providers. However, Ursitti said the organization has worked to pass autism legislation since 2009 and the commission has never studied the issue.

“It’s important to note that there’s nothing that says they (lawmakers) have to wait for the mandate commission to act,” she said.

There are bills in both the Senate and House, but their language is the same. “Crossover Day” in the Georgia General Assembly on Thursday is the deadline when bills stuck in committees and not voted on out of one chamber are dead for that year. Both bills remain in each chamber’s insurance committees.

Letter on Federal Employee Health Benefits

A Tuesday release from Representative Jim Moran (D-VA):

Today, lawmakers from the DC Metro area sent a letter to Director of the Office of Personnel Management John Berry asking the agency to ensure Federal Employee Health Benefits Program (FEHBP) insurance providers cover applied behavior analysis (ABA), a therapy frequently used for children with Autism Spectrum Disorders.

Signing onto the bipartisan letter are Congressmen Jim Moran (D-VA), Frank Wolf (R-VA), Steny Hoyer (D-MD), Del. Eleanor Holmes Norton (D-DC), Elijah Cummings(D-MD), Bobby Scott (D-VA), Chris Van Hollen (D-MD), John Sarbanes (D-MD), Donna Edwards (D-MD), Rob Wittman (R-VA), and Gerry Connolly (D-VA).

“We applaud the decision to reclassify ABA as a medical therapy covered under FEHBP. At the same time, we are disappointed that families in many areas around the country, including our own, are not benefiting from this decision,” the lawmakers wrote. “All federal workers, not just a fortunate few, should have plans that cover ABA.”

Beginning in 2012, FEHBP allows, but does not require, health plans to cover ABA. According to the organization Autism Speaks, only 67 state-specific plans offered ABA coverage for 2013 and the Washington Post has highlighted that no FEHBP plans in the National Capital Region cover ABA.

UN Report Mentions the Judge Rotenberg Center

Previous posts have discussed torture at the Judge Rotenberg Center.  Emily Willingham writes at Forbes:

Some practices used as “therapy” for autism in the United States amount to torture, a U.N. representative says. The U.N.’s Juan Mendez is the organization’s special rapporteur on torture, and in his report examining torture worldwide, he’s called out the only facility in the United States that uses “skin shocks” to ‘treat’ people with severe mental illness or developmental disabilities, including autism. That facility is the Judge Rotenberg Center (JRC), formerly the Behavioral Research Institute. While it once was located in California and then moved to Rhode Island, the facility is now sited in Massachusetts. Mendez expresses concern in his report (p. 84) that if Massachusetts becomes too hot to hold the JRC, the center might simply relocate again, and he urges action at the federal level to end the use of such aversives nationwide.

Red Tape and the New Jersey Mandate

In Newark, New Jersey, the Star-Ledger reports:

Parents of children with autism told an Assembly committee today that state regulations governing insurance coverage for their children's treatment are so confusing they had to hire an attorney and medical billing expert to help untangle them.

"I'm a medical doctor and the issues with coding were so involved I had to hire someone to help me," Meredith Blitz-Goldstein, an oral surgeon, told the Assembly Financial Institutions and Insurance Committee.

After listening to complaints for nearly two hours, Assemblyman Gary Schaer (D-Passaic), the committee chairman, ordered insurance companies and disability advocates to revise the regulations and make them easier for families to navigate or else lawmakers would do it for them.

“There will be a hearing convened six months from now, and for everyone’s sake I pray we have meaningful movement,” Schaer said.

The People Who Killed the Georgia Mandate

WXIA reports on the officials who killed mandate legislation in Georgia:

Representative Richard Smith said no. He's the Chairman of the House Insurance Committee, where the bill was sent. He wouldn't give it a hearing. And he announced he was sending it to the Mandate Commission where it wouldn't get out.

Senator Tim Golden is the Chairman of the Senate Insurance Committee. He wouldn't give the bill a hearing, initially. He said yes this week, but the hearing is next week -- too late.

Above them -- Speaker David Ralston runs the house. He could have moved the bill. Supporters begged him to help. He would not intervene.

Lieutenant Governor Casey Cagle runs the senate. He could have moved the bill. Supporters begged for his help. He would not intervene.

Google, Autism, and Hateful Terms

The Internet has been central in the rise of autism as a national issue.  But it has also provided a forum for those who hate and resent people on the spectrum.  In Newark, The Star-Ledger reports:

How would you feel if an internet search about your neurological condition produced a suggestion you be exterminated?

Autism activists have succeeded in getting Google to change the results of its automated search process so that offensive "hate speech" doesn't routinely show up as a suggested match.

Until today, typing "Autistic people should...." into Google's search engine would produce four so-called "auto-complete" suggestions: that they "be killed," "die," or "be exterminated."

In response, an autism activist group staged an online protest called a Flash Blog, which encouraged people with autism to counteract those violent suggestions with poetry and positive awareness of the developmental condition.

 The Star-Ledger updates the story:

With each passing day, Google’s effort to eliminate offensive terms about autism from its search engine suggestions is gradually taking effect.

Typing in the phrase “Autistic people should ...” last week produced so-called “auto-complete” suggestions that they “be killed,” “die” or “be exterminated.”

Four days later, there has been some improvement: Only one of the three auto-complete suggestions expresses violent hostility to people who have the neurological developmental disorder.

The latest top search result suggestion is “killed,” followed by “should autistic people have children” and “should autistic people drive.”

New York License Update

Previous posts have discussed a bureaucratic maneuver in New York to limit ABA services.  Autism Speaks reports:

Autism Speaks today reported it is making progress with high-level Cuomo administration officials and legislative leaders in resolving a bureaucratic dispute which has limited access to ABA services provided under New York's autism insurance reform law which took effect last November.

Under emergency regulations issued by the Department of Financial Services (DFS), practitioners of Applied Behavior Analysis (ABA) have to be state-licensed in order to qualify for insurance reimbursement. New York has no ABA license. In addition, the insurance reform law made clear that certification by the national Behavior Analyst Certification Board (BACB) would be sufficient for practitioners to be covered under the law.

"Autism Speaks has been in conversation on this issue with high-level state officials, who now understand the problems and the urgent need for a remedy," said Lorri Unumb, Esq., Autism Speaks vice president for state government affairs. "We have devoted substantial resources, both political and legal, toward resolving this issue as quickly as possible. For now, we believe that it is in everyone’s best interest to allow the legislature to work on a fast-track legislative solution that would create state licensure for BCBAs already certified by the Behavior Analyst Certification Board."

Unumb said Autism Speaks continues to regard BACB certification as an appropriate standard for behavior therapists and that it would continue to keep all options open in order to bring a quick resolution to the dispute.