Just a month into a special therapy program, Daniel, a 4-year-old with autism, was playing at his Huntington Beach home when he shocked his mother by asking two older cousins, “What’s your favorite dinosaur?”
“I almost fell out of my chair,” said Rachel Harris, Daniel’s mother. “It was the first time he had ever initiated such a question and waited for answers.”
Harris attributes her son’s dramatic progress to ABA (applied behavior analysis) therapy, which he started in January through the Healthy Families program, a state-subsidized private insurance plan for children.
But on April 1, the Harris family lost access to ABA therapy when California officials began moving approximately 900,000 children statewide from Healthy Families into the state Medi-Cal program.
The move is part of the large-scale realignment of services happening as officials prepare for the implementation of the federal Patient Protection and Affordable Care Act, known as Obamacare, beginning in January.
In Orange County, there are about 35,000 children from Healthy Families being moved from three private insurance carriers to CalOptima, the county-run health plan that handles Medi-Cal patients. CalOptima spokeswoman Kellie Todd estimated there are at least several dozen children with autism receiving ABA therapy among the 22,000 transferred on April 1.
On April 22, Harris testified before the Assembly Budget Subcommittee about an unintended consequence of that transition.
“It has been beyond disappointment to lose insurance coverage to this precious ABA therapy,” testified Harris, who had quit her job to aid her son.
After ABA therapy, she said, her son made major improvements in eye contact, social interaction and awareness. “But since he lost his ABA therapy, he’s already regressing,” she lamented. “He bit his younger brother, climbed on top of the refrigerator and eloped into a public parking lot. His actions fill us with fear.”
Statewide, at least 200 complaints have been made about the loss of ABA services, subcommittee records show. At CalOptima, Todd couldn’t estimate a number but said the agency is aware there are “unfortunate” issues that need addressing.
The Harris family isn’t alone in such service problems, according to interviews and testimony at hearings in Sacramento last week.
Beyond children suffering from autism, those needing dental services, youths in rural regions and other areas where access to practitioners is limited will also be adversely affected by the transition from Healthy Families to Medi-Cal, according to hearing testimony.
Legislative sources said that families like the Harrises with high-need individuals are being dumped into administrative cracks as state agencies fight amongst themselves to avoid paying for such costly patients.
The state Department of Health Services’ recent moves have been devastating for families with children with autism-related disorders, said Kristin Jacobson, a Burlingame patient advocate who is president and co-founder of Austism Deserves Equal Coverage, an advocacy group.
“This was a huge bait-and-switch,” said Jacobson, who specializes in insurance issues and testified in Sacramento. “The state health department promised there wouldn’t be a change in benefits. Now they have done a run out on all these families with children with autism.”
Experts say ABA therapy can cost about $40,000 per year but can and does make youths go on to lead productive lives while avoiding major, life-long costs. Studies show an autistic individual who isn’t assisted early can cost society $3.5 million over his or her lifetime.
Last year when the state health department laid out its plan for moving groups of children from Healthy Families into Medi-Cal on Jan. 1, legislative offices said they were assured that the kids wouldn’t lose services.
But that is not what state legislators were told at this week’s hearing. Health department officials acknowledged that services may change.
During his testimony, Toby Douglas, the state health services director, dodged legislators’ questions and said children with autism may be able to receive ABA services from the state Department of Developmental Services.
Children coming from the Healthy Families program possibly could get ABA therapy from that department’s statewide system of regional centers, which provide assistance to the developmentally disabled, Douglas said. But he noted that the children may not qualify for regional center services.
At one point in the testimony, subcommittee Chairwoman Holly Mitchell, D-Los Angeles, complained she felt like “a hamster on a wheel.”
The loss in services also did not sit well with Allan Mansoor, R-Costa Mesa, who sits on the subcommittee.
“It is unacceptable to me to see autistic children lose services during the transition from Healthy Families to Medi-Cal, after being clearly told by the state that there would be no disruption in the services they rely on,” said Mansoor.
“The state should not allow children to slip through the cracks. I am dedicated to working with my colleagues on the Budget Committee of Health and Human Services towards a fast and immediate solution.”
In a statement April 24, the state health department stated that Governor Jerry Brown is moving to expand Medi-Cal by January in “a measured approach.”
That approach “must be sustainable and affordable to California over the long haul,” the statement declared. The state is “working closely with the counties and our stakeholders to ensure that the most appropriate option is selected.”
But for families like the Harrises, there is fear they could remain caught in a continuing bureaucratic struggle.
When their child was nearly three years old, Rachel Harris attempted unsuccessfully to receive the ABA therapy through the Regional Center of Orange County in Orange. She says she was referred to her school district, which also can provide the therapy when a child is three years old. But families can get caught between the two systems.
Janis B. White, the regional center’s chief operating officer, said they never refuse to assess the child if a family insists on a regional center analysis.
Last week, Harris said, she applied again for regional center services. The assessment for medical eligibility is under way, but it is unclear now whethr the boy will meet the medical criteria.
In Orange County, the 22,000 Healthy Family children moved to Medi-Cal on April 1 were from Health Net and from Kaiser Permanente, which covered Daniel. On Aug. 1, the final 13,000 Healthy Families children from Anthem Blue Cross will be transferred. Then officials will know the full impact of the transition.
For families seeking pediatric dentists, those leaving Healthy Families may experience difficulties securing dental care as the state is cutting the Medi-Cal reimbursement rate for dentists by 10 percent.
Already, Medi-Cal beneficiaries have difficulty finding dentists who will accept Medi-Cal, which pays less than private insurance programs.
“For many dentists, this is pushing them over the line to drop out of the Medi-Cal program,” said Jacobson.
Rex Dalton is a San Diego-based journalist who has worked for the San Diego Union-Tribune and the journal Nature. You can reach him directly at firstname.lastname@example.org.