Virginia autism bill stalls

From Leesburg Today in Virginia:

Loudoun parents who have spent months working to get legislation passed in Richmond that would provide health insurance coverage for families with children
suffering from autism were dealt a blow this week, when the House of Delegates subcommittee on Commerce and Labor was silent on the issue.

After what Lansdowne resident Pat DiBari called 45 minutes of "testimony and great questions and dialogue back and forth" there was "absolute silence" from the eight present subcommittee members, he said.

"Nothing. No action. Zero," DiBari said Tuesday evening. "They chose not to vote. Families are stunned, outraged, disappointed, you name the emotion."

Going into Tuesday night's subcommittee meeting DiBari and other parents who have been advocating for passage of HB1588 were optimistic. Since last year, parents from Northern Virginia have begun to reach out to parents of autistic children around the state to support legislation introduced by Del. Bob Marshall (R-13) that would mandate medical coverage of habilitative services for children.

The bill describes habilitative services as "health and social services directed toward increasing and maintaining the physical, intellectual, emotional, and social functioning of developmentally delayed individuals, including occupational, physical, and speech therapy; assistance, training, supervision, and monitoring in the areas of self-care, sensory and motor development, interpersonal skills, communication, and socialization; and reduction or elimination of maladaptive behavior."

In a statement released Feb. 4, Marshall said the lack of action on the part of the subcommittee was a "display of complete indifference" and said he had told the members of the subcommittee who were present that "silence is not a morally acceptable response to this situation."

"Three members who favored HB 1588 were not present. I pointed out to the subcommittee that they had the ability to recommend reporting the bill to the full Labor and Commerce Committee without any recommendation. That was also met
with silence," Marshall wrote. "I noted to Del. Terry Kilgore, who chairs the full Labor and Commerce Committee, that he has the authority to bring up HB 1588 regardless of the actions of the subcommittee. He said he would not do that. Again, silence is not an acceptable response. Legislators are sent to Richmond to confront issues not duck them."

Last spring the bill also was left in committee, but was regenerated this year and there were hopes that it would gain support in both chambers of the General Assembly.

"I think it's been an uphill battle, but we've got a lot of people on both sides supporting it," Jodi Folta, who founded the Loudoun County Autism Network with DiBari, said before the subcommittee meeting.

Members of the Loudoun County Autism Network have said Marshall's legislation would take a large burden off of parents of autistic children, many of whom are facing medical bills ranging from $10,000 to $50,000 per year and are having to take out home equity loans and second mortgages to cover the cost.

According to the national organization Autism Speaks, one in 150 people will be diagnosed with autism, making it more common than pediatric cancer, diabetes, and AIDS combined.

The Loudoun Board of Supervisors, the Leesburg Town Council and the Loudoun School Board have all expressed support for the bill, but one of the big events
that led parents to be hopeful was the debate that occurred in the Mandated Benefits Commission in November, a day DiBari called "a roller coaster ride."

"We thought it was just a vote, but it ended up being a debate," he said. "We were scrambling on our Blackberrys to get them the answers they needed."

Ultimately, the commission voted to support the bill and by January supporters of the bill believed they had at least half of the House of Delegates in support of the bill, which places a $36,000 cap on the annual maximum benefit coverage for families. In January, almost 300 people, including several delegates and senators, gathered at the state capitol building for a rally in support of the bill and since then there have been parents and supporters at the capitol building every day talking to legislators.

"They've been meeting with delegates and telling their stories," DiBari said.

Indeed, Del. David Poisson (D-32), who has become a co-patron of the bill, said it is the families who have made a difference."The parents have been very transparent," he said. "They have revealed more about their lives that we would certainly expect from anyone else who comes before the General Assembly."

Most of the opposition to the bill has come from the business sector, including the Virginia Chamber of Commerce. Concerns have been raised that requiring businesses to cover autism treatment in their insurance would put too much of a burden on business owners. But that's a claim that DiBari, Folta and others reject.

"We have to look what this is going to do to families in Virginia. Not just one or two, but a large number of them," Poisson said. "Over the longer term, what toll is that likely to take, not only on the families, but on Virginia as a whole? The less these parents are able to take care of these burdens on their own, the more they are going to be reliant on services."

Feb. 2, a study prepared by a consulting firm on the costs associated with HB1588 was released and the data showed that premiums would rise only $1.90 per month per covered person. Autism Speaks at one time estimated the monthly cost to be $3 or $4.

"We're really excited about this because it's based on this actual bill," Folta said. "It's based on the cap in this bill. It's based on the number of kids in this state."

Folta and DiBari had hoped the new numbers would silence some of the critics that said the bill would be too expensive for businesses, but Tuesday's lack of a vote left them questioning.

"There's a health care crisis, but we can't hold these young children hostage because there's a larger problem with the system in this country," DiBari said. "We think this is a reasonable bill that could immediately impact 10,000 families."

The bill does not cover all families with children suffering from autism. It leaves out state government employees and those companies that self-insure, but those omissions were not done easily, Folta said.

"It doesn't cover state employees, but that is because of the budget," she said. "In this climate it wouldn't even work."

Other bills that are designed to try an address the issue of autism treatment, specifically those that make it a school system issue, have also failed at the General Assembly and parents are hoping legislators are beginning to realize that HB1588 is really the only way to help autistic children.

"A lot of addressing their needs is addressing their everyday needs," DiBari said. "Those are things that need to be addressed before school age. They're missing the prime target of ages."

Since the failure to get a motion from the subcommittee, parents are regrouping, hoping that there is still a chance for the house bill. Parents are hoping to reach out to Del. Terry Kilgore (R-1), chairman of the Commerce and Labor Committee, who was not present at the subcommittee meeting, and Del. William J. Howell (R-28), who is Speaker of the House, to demand a vote on the bill.Parents are also planning to shift a majority of their focus to members of the Senate Commerce and Labor Committee, which is reviewing an identical bill filed by Sen. Jill Holtzman Vogel (R-27).

Vogel's SB1260 is scheduled to come before the committee for consideration next week.All members of the Loudoun delegation, DiBari says, have expressed their support for both bills, but only Del. Tom Rust (R-86) sits on the House of Delegates Commerce and Labor Committee. Sen. Mark Herring (D-33) sits on the Senate committee.

While parents are still hoping for a result that will bring them the relief they desperately need, DiBari and Folta both say they are happy that Loudoun's elected officials have taken up the reins of the autism coverage issue.