By Fredrick Kunkle and Anita Kumar
Washington Post Staff Writers
Saturday, February 5, 2011; 5:27 PM
RICHMOND - In the beginning, several Northern Virginia families whose children have autism thought that their wrenching stories would be enough to get some help from their representatives in the General Assembly.
At town halls and rallies, through blogs and e-mails, the families conveyed the difficulty of coping with a mysterious ailment and the staggering cost of its treatment, as they pleaded with lawmakers to impose mandates for insurance coverage.
But when that didn't work, the families took a new tack. They focused on the facts. They drilled lawmakers with detailed cost-benefit analyses to the state. They sometimes made explicit their threat of political action at the polls, while all along quietly working on House Speaker William J. Howell (R-Stafford), whose eventual support angered some members of his party.
Above all, the families lowered their expectations.
Now, after following the classic playbook of grass-roots activism for 11 years, these families have come within striking distance of victory, as Virginia appears poised to join at least 23 states that mandate insurance coverage for autism.
On Wednesday, the Republican-led House gave final approval to a bill that would require insurers to provide limited coverage for autistic children. The Senate, whose Democratic majority has backed more expansive versions of the bill in previous years, will probably debate the measure Monday.
"We got smarter at trying to convey our issue," said Teresa Champion, 52, a lawyer from Springfield who has an autistic child. "It wasn't the crying mom, saying, 'I need help' - and, you know, they're like backing away."
The House bill, sponsored by Del. Thomas A. "Tag" Greason (R-Loudoun), passed 74 to 24, with 20 Republicans opposed. Despite benefits that had been sharply limited compared with proposals in years past, autism advocates were thrilled.
"This bill is a huge step in the right direction for the state of Virginia," said Pat DiBari, president of the Virginia Autism Project, a nonprofit that grew out of a Loudoun County summit on autism in August 2008.
"And the fact that it's an election year - it's hard to be against children and autism and their families," the senator said.
The speaker's support - which all but ensures that the bill will pass the General Assembly this year - has riled some conservatives. They question the wisdom of a new mandate while opposing the federal health-care overhaul passed last year.
"I think it's the worst possible time to start adding more mandates,'' Del. Kathy J. Byron (R-Lynchburg) said. "There are too many unknowns when we are trying to be fiscally responsible, when the government is far-reaching and mandating what our health care should be - everything that I've stood against."
For the same reason, some Democrats gloated.
"After we pass this bill, I'm confident that we'll have no more partisan attack speeches about big government, about taxes, about job-creating, about economic environment - no more hypocritical accusations," Del. Mark D. Sickles (D-Fairfax) said during a floor debate. "That's all behind us now. . . . So let's pass a good, stiff mandate, one that was not even included in Obamacare itself."
The National Conference of State Legislatures says that 35 states and the District of Columbia now have laws related to autism and insurance. As of November 2010, at least 23 states specifically require insurance companies to provide coverage for treatment for autism. Others, including Maryland and the District, require at least limited coverage, the NCSL says.
Greason's bill would require insurers to provide as much as $35,000 a year for autism treatment, including applied behavioral analysis and other therapies, for children ages 2 to 6. The bill also would exempt firms with 50 or fewer employees and those that are self-insured. The bill would allow companies to opt out of the coverage if it drove the cost of premiums higher than 1 percent a year.
"It is the most restrictive autism bill in the country, but it will help hundreds of families that need our assistance," Greason said.
An impact statement prepared by the Department of Planning and Budget estimated its annual cost to be $1.2 million - a figure that Greason said was based on assumptions that did not pertain to his bill. Greason said the costs range from $590,000 to $820,000 a year. The impact statement also questioned whether the coverage limit would conflict with federal law.
Del. Jackson H. Miller (R-Manassas) said he opposed the bill because it only applies to some businesses, it would help a limited number of families and he doesn't believe federal law allows the state to cap annual costs at $35,000. He later asked Attorney General Ken Cuccinelli II (R) to determine whether federal law allows the General Assembly to cap costs at $35,000 a year. Cuccinelli has yet to issue an opinion.
And, considering Howell's power over bills and committee assignments, other members of the Republican-controlled House courted danger by trying to amend or kill the proposal, while the conservative group Americans for Prosperity targeted Howell (R-Stafford) in recorded phone calls statewide. The Virginia Tea Party also attacked the bill.
"This creates a slippery slope to a nanny-state type of government, eroding away the freedom of choice and autonomy that businesses and individuals enjoy today," said Mark Kevin Lloyd, chairman of the Virginia Tea Party Patriot Federation.
The Independent Insurance Agents of Virginia, Virginia State Chamber of Commerce, National Federation of Independent Business and the Virginia Association of Health Plans also remain opposed, citing the expense of another mandate.
"They always increase the cost," said Nicole Riley, a spokeswoman for the business federation.
But advocates said that the costs would not be extreme, and that the public is already having to bear some of the burden by shifting care to public schools - and they focused their efforts on driving those points home to the House speaker.
DiBari said he visited Howell multiple times in the speaker's private law offices. Champion said advocates followed Howell to town halls and other public appearances. They laid out for him the data from South Carolina, where a less restrictive autism bill costs the state about 84 cents per insurer per month and less than $1 million a year. And it didn't hurt that Howell was friendly with his counterpart in South Carolina's legislature.
Howell even received a telephone call from a former law school classmate at the University of Virginia: Bob Wright, the former chairman of NBC Universal who launched the foundation Autism Speaks after learning that one of his grandchildren had autism.
DiBari said he tried to understand Howell's position as much as he tried to convey his own. Howell was sympathetic, but told DiBari that he and other advocates had to also have a grasp of the potential impact on the state budget and private businesses when the economy was still in poor shape. "We had a strong current to fight," DiBari said.
In interviews, Howell said this year's bill strikes a balance between the business community and families of autistic children.
"I honestly can say that this was not a political consideration," Howell said. "It looked like something we could do to reach the core people that really need the help the most without having an undue burden on businesses."
Gov. Robert F. McDonnell (R) has not decided whether he would sign such a measure. Conservatives are expected to lobby him for a veto.
Staff writer Rosalind S. Helderman contributed to this report.