Va. families of autistic children still waiting for coverage

Richmond — Jennifer Tidd was more than a little relieved when she learned that Virginia planned to require insurance companies to pick up the cost of thousands of dollars in treatment for autistic children, including her then-4-year-old son, Quentin.

That was a year ago — and the money never materialized.

Virginia General Assembly: 2012 Guide

Explore the session

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).