When 4-year-old Catalena DiBattista learned her autism therapist would not return, her lips began to quiver and her eyes welled with tears.
"She was very sad" before the service was temporarily restored, said her mother, Pamela. "She loves Miss Alana."
She and other parents of autistic children have been on a roller-coaster ride since the state began transitioning to Medi-Cal some 860,000 children who received low-cost health, dental and vision care through its soon-to-be-defunct Healthy Families program. The shift is expected to save California nearly $64 million this year.
While the number of families affected is small, their plight underscores the huge changes on the horizon for health care consumers as they navigate ongoing state and federal health care reforms.
Parents say they were promised the move would not disrupt services for autistic children.
But many now say they feel betrayed after weeks of conflicting or unclear answers about whether their children can continue a popular and effective therapy, applied behavioral analysis, that can cost $20,000 to $50,000 a year.
Catalena's therapy has been discontinued and restarted twice -- and is now scheduled to end again Tuesday.
"It's been a nightmare," said Karen Fessel, executive director of the Lafayette-based Autism Health Insurance Project, which helps families obtain coverage. "Nobody's been able to give them straight answers."
A coalition of children's advocacy groups has asked the state to suspend the transition, planned in phases throughout the year, until this issue is resolved. "The parents that we've talked to are just beside themselves -- this is a matter of their child being able to function in the world," said Kelly Hardy, director of health policy for Children Now, an Oakland-based national advocacy group.¿
The behavioral therapy methods vary but typically involve intensive one-on-one sessions to teach social and behavioral skills using rewards and, often, play therapy. Many children make great progress, particularly when young, but that window can close as they age, experts say. That is why disruption in services so upsets parents.
"You can miss the window of opportunity entirely," said Kristin Jacobson, co-founder and president of Autism Deserves Equal Coverage, based in Burlingame.
It's difficult to estimate how many children could be affected. Advocates say 200 statewide were told they will no longer be eligible for the therapy, and about 400 children receive it through Healthy Families. A state agency spokesman said it was trying to determine the number affected.
All told, about 10,000 children with an autism spectrum disorder are in the Healthy Families program and many may seek behavioral therapy at some point, Jacobson estimated.
On April 22, Health Care Services director Toby Douglas told a legislative committee that although the therapy is not covered in Medi-Cal managed care plans, parents can reapply for it through the 21 regional centers that the state contracts with to coordinate services for people with developmental disabilities.
Because of stricter regional center criteria, however, Jacobson estimates that as many as three-fourths of autistic children will not be eligible for behavioral therapy. That leaves parents with few or no options because most cannot afford the costly therapy.
Tony Cava of the California Department of Health Care Services said the state is working to ensure children get the care they need.
Catalena improved significantly since beginning therapy in July, her mother said. Her speech blossomed and she is learning better ways to deal with what can be three-hour tantrums.
In a moment DiBattista will never forget, about a month ago Catalena called her "Mommy" for the first time without prompting.
"She wanted to show me her art project that she was very proud of," her mother said. "I was in tears. I dropped the broom and hurdled over a chair."
Shortly before she turned 3, Catalena was diagnosed with a milder form of autism known as "pervasive developmental disorder -- not otherwise specified." Regional centers typically don't provide behavioral therapy for children with this diagnosis, Jacobson noted.
With the recent disruptions in her therapy, DiBattista said she is seeing signs that Catalena is regressing. "She's started with the screaming and screeching again, and she's kind of stopped using her words."
Fourteen-year-old Owen Carlson of Livermore also has been diagnosed with pervasive developmental disorder. His mother, Alice Mayall, started pushing for behavioral therapy in July after hearing about a new state law requiring private insurers to cover it.
Owen was authorized to receive the therapy in mid-March, but Medi-Cal will not cover it and neither will the Regional Center of the East Bay.
Mayall said that on Jan. 1, a letter from the state told her: "Your child will continue to have all of the same services during this move. Your child's coverage will not be interrupted."
Added Mayall: "Someone was either knowingly dishonest or negligently dishonest."
Sandy Kleffman covers health. Contact her at 510-293-2478. Follow her at Twitter.com/skleffman.