ABLE Act Prospects

At National Journal, Sarah Mimms writes of prospects for the ABLE Act:

Although the bill failed to gain traction in past Congresses, it appears to have real legs heading into the fall. A Senate Democratic aide explained that although the concept has always been popular, it has taken years for advocates to get momentum for an issue that isn't particularly timely.

But heading into the August recess, the Able Act now has an astonishing 366 cosponsors in the House and 76 in the Senate and is very likely to pass this fall. Both House and Senate leadership have already committed to bringing the bill to the floor in their respective chambers and are aiming for September votes, according to the Senate Democratic aide. That timeline would provide Congress with one last kumbaya moment before all hell breaks loose in the November midterm elections.

"No other bill in Congress has this level of bipartisan and bicameral support," Sen. Robert Casey, D-Pa., the lead sponsor in the Senate, said Wednesday, during a hearing of the Senate Finance Committee's Subcommittee on Taxation and IRS Oversight, which he chairs.

"That's more than bipartisan, that's outstanding around here," added Sen. Mike Enzi, R-Wyo., the subcommittee's ranking member. Sen. Richard Burr, R-N.C., a fellow subcommittee member and cosponsor of the bill, said he couldn't think of a reason that any member "would want to get in the way of this bill" at this point.

The Able Act could still be held up, however. Fights over amendments have derailed popular legislation in the Senate several times already this Congress. But with Senate Majority Leader Harry Reid and Minority Leader Mitch McConnell already signed on as cosponsors, advocates are optimistic that they'll avoid a floor fight.

Wandering Adults

Dan Morse writes at The Washington Post (h/t HP):

Every day in Montgomery, Laurie Reyes has a direct view of challenges facing families. She is a county police officer whose job is to help vulnerable residents’ caregivers. On average, Reyes says, two or three people with autism wander away from their homes every week.

The officer works with families to employ a “layered” approach to keep kids and adults safe: Identification bracelets, information letters given to neighbors, in-home therapists, alarm systems, electronic tracking bracelets. But even the best defenses don’t always work.
Reyes sees a difference between children who go missing and the adults who do so.

People are more apt to intervene when they see an 8-year-old walking down the street. But someone older or full-grown, even if acting erratically? People might drive right by, too intimidated to approach. [Unless the ASD adult is acting erratically, he or she looks like any other adult walking down the street.]

“If you have a little child, people are going to jump to help,” Reyes says. “That’s a huge dynamic.”

The officer has worked with families of autistic children for 10 years and has learned to broaden her duties. She trains patrol officers in the best ways to communicate with people who are autistic. She works with social workers to try to get kids and adults into programs.

And she’s even testified to support legislation that would prompt health insurance companies to pay for in-home alarm systems — asserting that in the simplest of terms, that can be a medical need. But to date, she’s gotten insurance payments for only two systems.
“It’s a fight to get that coverage,” Reyes says.

Diagnosis Bottleneck in Michigan

Rosemary Parker reports at MLive:

The state of Michigan delayed enacting autism coverage for children covered by Medicaid until April 2013, a year after the bills were signed into law; then, citing a lack of money, they limited eligibility to children under the age of 5.

Meanwhile, the state's largest private insurer, Blue Cross-Blue Shield of Michigan, required that to be eligible for coverage of autism therapies children must be diagnosed not by their pediatrician or psychologist, but by Board-certified Behavior Analysts at approved Autism Evaluation Centers — of which, in 2012, there were only three in the state, Schrum said.

With approximately 18,000 children believed to be suffering from autism in Michigan, "within weeks, all (of the existing evaluation centers) had a waiting list of 12-18 months," Schrum said.
"Between Medicaid and Blue Cross, the systems have created a bottleneck that prevents children from accessing services," Schrum said.

That kind of roadblock nearly shuttered the $1.7-million Great Lakes Center.

"It almost killed us the first year," Schrum said. Even with cut-backs and staff layoffs, it took until December 2013 for the Center to stop losing money, he said.

The situation has slowly improved. In July 2014, 10 centers were listed on the Blue Cross website as authorized to diagnose children with autism. Eight of those are on the east side of the state, and two in Grand Rapids.

Their waiting list? Although a few centers can schedule an initial appointment within several weeks, for many, the wait is much, much longer. At the University of Michigan Health System, "we're scheduling 12-18 months out," a receptionist said.

Hearings

Yesterday, the Subcommittee on Africa, Global Health, Global Human Rights, and International Organizations of the House Foreign Affairs Committee held a hearing on "The Global Challenge of Autism." Here are links to prepared statements:

• Mr. Jose H. Velasco, Vice President of Product Management and Head of Autism at Work Initiative SAP [full text of statement]
• Mr. Thorkil Sonne, Founder and Chairman, Specialisterne [full text of statement]
• Ms. Theresa Hussman, Board Member, Autism Society [full text of statement]
• Mr. Michael Rosanoff, Associate Director, Public Health Research, Autism Speaks [full text of statement]
• Mr. Ron Suskind, Author [full text of statement]

The day before, the Subcommittee on Taxation and IRS Oversight of the Senate Committee on Finance held a hearing on the ABLE Act. Robert D'Amelio, the father of two sons on the spectrum, testified for Autism Speaks:

An ABLE account would enable families like mine to save for housing, job supports, education, and other services without the fear of losing Social Security or Medicaid benefits. The current section 529 plans fall short for the many individuals with autism and other disabilities who cannot or choose not to go on to college. As much as anything else, the ABLE Act is about fairness. If Christi and I can use a college savings account to provide for our daughter Lindsey’s future, why can’t we use something similar to take care of Nicholas and Christopher?

ABLE Act Hearing

Autism Speaks reports:

The ABLE Act, which would allow tax-free savings accounts for people with disabilities, was warmly received today by a U.S. Senate committee which heard testimony from supportive witnesses, including Bob D'Amelio, a North Carolina advocate who spoke on behalf of Autism Speaks.

The hearing by the Senate Finance Committee's subcommittee on taxation and IRS oversight, was the first by Congress on the bill, S.313, which was introduced in February 2013. Sponsored by Sen. Robert Casey (D-PA), left the bill has 74 co-sponsors; the House version, HR.647, sponsored by Rep. Ander Crenshaw (R-FL), has 367 co-sponsors.

"No other bill in Congress has this level of bipartisan, bicameral support," said Casey, who chairs the subcommittee. "This level of support is a testament to the hard work of families and other disability advocates, many of whom are present here today. It is also reflects the importance of what the ABLE Act does."

The ABLE Act (Achieving A Better Life Experience) would mirror Section 529 college savings accounts by allowing families and individuals with disabilities to set aside tax-free savings to pay for housing, education, transportation, job support and other costs. Participants would not lose their Medicaid or Social Security benefits.

RFK Jr. and Autism One

At Left Brain/Right Brain, Matt Carey says that RFK Jr's biggest problem is not his commentary on thimerosal but his appearance at an Autism One event.

AutismOne is a staunch supporter of failed ideas like thimerosal and MMR cause autism. AutismOne is also a place that promotes the ideas that one can cure autism by chemically castrating disabled children, or making disabled children drink bleach or take bleach enemas until they pass their intestinal mucosa (which are relabeled as worms) and more.
...

While multiple outlets are taking turns pointing out that you have taken a very irresponsible stance on vaccines, I’ll just ask: Mr. Kennedy, did you spend anytime looking around AutismOne? If so–why the hell have you not come forward to distance yourself from the junk science that goes on there? Why the hell did you lend your family’s name to that operation? Your family basically built the special education system in our country. The National Institute of Child Health and Human Development is named for a relative of yours. And you are loaning that name to a convention where the keynote speaker abuses autism parents? Have you sunk so low that you are lending your family’s credibility to Andrew Wakefield? 

If you were unaware of what AutismOne is, shame on you for lending your name. If you are aware of these goings on, and don’t distance yourself, your stance on thimerosal is the least of your problems.

ABA Program in Iowa

The Des Moines Register reports on Iowa's $5 million program to support ABA, which passed last year and is now going into effect.

Most private insurance plans are reluctant to cover the therapy, which can cost more then $30,000 per year. Iowa's Medicaid program has long covered it for disadvantaged children or those with severe intellectual disabilities. But until recently, the state offered no help for middle-class autistic children with average intelligence. 

Legislators almost never earmark millions of dollars for a specific treatment for any illness or disorder. Rep. Dave Heaton, who spearheaded the proposal to make an exception, said the selling point was the prospect of helping autistic children get on track. 

"If these kids don't move toward living somewhat normal lives, when they become adults, they'll be under state care for the rest of their lives, and that's very, very expensive," he said. 

Heaton, a Mount Pleasant Republican who oversees spending on human-service programs, said legislators considered requiring private health-insurers to pay for the therapy, but determined it would be a tough sell. The prospect of adding a special Medicaid program to pay for a range of autism therapies seemed too expensive, Heaton said. 

Legislators instead decided to pay directly for Applied Behavior Analysis. "Of all the things that are out there, this has been the most successful approach," he said.