Gov. Robert F. McDonnell (R) signed a bill into law last spring mandating coverage, but Attorney General Ken Cuccinelli II (R) determined that the legislation contained imprecise language that legislators needed to correct.
Since then, families who expected insurance coverage have continued to pay out of pocket — if they can afford it — or forgo treatments they say could help their children learn basic skills such as talking or walking.
“I just say: ‘Why? Why would you do this to families?’ ’’ said Tidd, 46, of Reston. “Every step of this process, every single thing that has occurred, has been designed to not pay.”
Despite a snag at the start of this year’s legislative session, a pair of bills are moving through the Republican-controlled General Assembly. But even if they pass, coverage is not likely until the end of the year.
Dozens of parents and treatment providers, clad in red, roamed Capitol Square last week, testifying in front of committees and lobbying lawmakers.
The activists blame Cuccinelli and McDonnell, who recommended the language, for the problems with the original bill; they say the officials were late to disclose a glitch over state licensing.
“They are not going to get access to this benefit because of this delay — all because of the interpretation of a sentence,’’ said Judith Ursitti, director of state government affairs of Autism Speaks, a national group that has spent four years lobbying in Virginia.
The legislation became part of the nation’s debate over whether to require autism coverage last year and had significant resonance in Northern Virginia, which has one of the highest autism rates in the country.
Last year’s bill required health insurers to pay for specialized treatment — called applied behavioral analysis — as well as occupational, speech and other therapies for children ages 2 to 6. The maximum benefit was capped at $35,000 each year.
The initiative failed for 11 straight years
until House Speaker William J. Howell (R-Stafford) backed it — even though conservatives considered the measure an unacceptable mandate that would drive up insurance costs.
Vania O’Keefe said analysis costs $2,000 a month for her 6-year-old son, Sean. His weekly hour of speech, physical and occupational therapies costs $125. Not to mention doctor’s visits and lab tests. Until recently, when the O’Keefes got off a waiting list for a Medicaid waiver, they mostly paid out of pocket.
“There’s a lot of talk these days about handouts,’’ said O’Keefe, 35, of Chesapeake. “That’s not what this is. We pay insurance every month. We shouldn’t have to choose between treatment and the mortgage.’’
Autism is a neurological disorder that affects one in 110 children and one in 70 boys, according to national statistics. Virginia does not keep statistics on autism, but the state Department of Education estimates that 11,700 autistic children attend school (many others are too young or not able to attend).
Thirty-four states and the District have laws related to autism and insurance, according to the National Conference of State Legislatures. At least 29 states require insurance coverage for autism treatment. Others require at least limited coverage.
There’s no estimate on the number of Virginia families who would benefit from the law, but it affects businesses that employ more than 50 workers and are not self-insured. Virginia set aside $1 million to cover state employees.
Teresa Champion, president of the Virginia Autism Project and the mother of an autistic child, said Cuccinelli and McDonnell worked quickly last year to implement far-reaching regulations for abortion clinics and could have done the same for the autism bill.
“It’s horrible to stand up and see the devastation on the faces of the families,” said Champion, who lives in Springfield.
Those who teach applied behavior analysis, which involves intense one-on-one training, are certified through a nationally recognized group, the Behavior Analyst Certification Board.
McDonnell amended last year’s bill to require the state to license the analysts. But Cuccinelli spokeswoman Caroline Gibson said McDonnell’s amendment
, which was not reviewed until after the legislation was approved, failed to give the Board of Medicine express authority to license them.
McDonnell spokesman Jeff Caldwell said the governor and the board worked to settle the issue with Cuccinelli’s office, but they decided that only a new bill would do.
Kerry Dillman, a board-certified behavior analyst from Woodbridge who works with seven autistic children, said a state license is an unnecessary step. She has written and called lawmakers to get this year’s legislation passed.
‘This is not the perfect scenario’
The House last week approved a measure, sponsored by Del. Thomas A. “Tag” Greason (R-Loudoun), that directs the board to write regulations within 280 days and create a work group of industry experts. It must be voted on by the Senate, which will consider a similar measure sponsored by Sen. Janet D. Howell (D-Fairfax).
Greason, who also sponsored the bill last year, has been teaching parents and analysts how to become citizen lobbyists. As he addressed a few dozen of them last week, he choked up when he urged them to fight a little longer.
“This is not the perfect scenario — perfect would have been we were doing this last year and you guys already had coverage,’’ he said.
Last year, a coalition of conservative groups, including the Virginia Federation of Tea Party Patriots and Americans for Prosperity, lobbied against the bill and targeted Howell via recorded phone calls statewide.
The Independent Insurance Agents of Virginia, Virginia Chamber of Commerce, National Federation of Independent Business and Virginia Association of Health Plans also were opposed, citing the expense of another mandate.
None of the groups are fighting the legislation this year.
Tidd, who has three other children, including an adult son with Asperger syndrome, said she heard about the law’s problems in November. Quentin, now 5, will soon be too old to qualify for the coverage.
Quentin, who is unable to speak and gets frustrated easily, goes to school with other autistic children and visits an analyst for two hours every other week.
“We passed the law,’’ Tidd said. “They had to know.’’