Many autistic children in the Cayman Islands are going without crucial developmental therapies because the expense is not covered by their health insurance, campaigners have warned.
Now parents are putting together a series of letters to government outlining the costs of treatment for their children. They want to see new changes to the law compelling insurance companies to provide essential coverage for children with special needs, in line with what many states in the US now cover.
Roz Griffiths, of the Special Needs Foundation of the Cayman Islands, said it should be mandatory for essential therapies to be covered. At the moment, some policies do include some level of coverage, but many do not.
“We have devised a petition which will go to the health minister and we are asking parents to detail what therapies their child needs and what it costs,” Ms Griffiths said.
The range of treatment required for children with autism varies depending on the severity of the condition, with costs running to $100,000-a-year in some cases. Speech and language therapy and occupational therapy typically costs $100-an-hour, with a minimum of two hours a week required for most children. An intensive course of applied behavioural analysis therapy is also recommended in many cases.
Most parents accept that not all the costs can be covered by insurance, but argue that some coverage would help.
In the US, 34 states have specific autism mandates, which require insurers to provide coverage for autism spectrum disorder, including speech and language therapy, up to a certain amount.
Florida, for example, requires the first $36,000 of annual treatment costs to be covered. Of the remaining states, most mandate some level of coverage. Only three states have no specific guidelines on autism coverage.
Ms Griffiths said she hoped the Cayman Islands would look at the coverage mandated in the US and provide similar help to parents here.
Health officials say they are sympathetic to the concerns of parents but have to tread a fine line between ensuring adequate coverage and keeping premium prices under control for the average person.
Health Minister Mark Scotland said there are no plans to add treatment for special needs to the Standard Health Insurance Contract. He said the ministry was working with the department of education to get a better grasp of how many children suffered from autism in Cayman but no legislation was planned. He said adding coverage to SHIC would raise the cost of the plan too much.
“Some children require this therapy all day or some have it two or three times a day and we certainly could not cover that under a Standard Health Insurance Contract,” Minister Scotland said.
Emma Donaldson, co-administrative director of the Special Needs Foundation, said government could mandate that insurers offer policies that included coverage for autism spectrum disorder without having to include coverage in the standard plan.
“The major hurdle for families accessing the interventions needed is primarily the lack of coverage provided by Cayman Islands health insurance,” she said. “It is this issue which adds financial burden and further stress to families with a child with special needs.”
Ms Griffiths, a senior speech and language therapist, said early diagnosis and intervention could, in many cases, reduce costs in the long run.
“If children don’t get therapy early they are not going to change, they are going to be behind in school, they are going to have social problems and they are going to need more expensive intervention later on in life,” she said. “Children with special needs, need help and parents shouldn’t be required to carry the full burden.”
The Special Needs Foundation is asking for changes to the Health Reform Law to ensure the essential therapies are covered. Right now, coverage depends on what individual parents can afford.
Morne Botes, whose 3-year-old son was diagnosed with autism last year, pays for a full-time ABA therapist. He said he was willing to spend the money now as intervention in the early years has the most impact.
“We are feeling that we will spend what we need to now to give him the best possible chance,” he said. “We’ve been fortunate because we have the money to do it.”
He said many families without the same resources would be unable to afford to go through the three-month process required to get an autism diagnosis, let alone get treatment.
Another parent, who pays for a full-time therapist for her 3 year old, said the costs of getting her child the intensive therapies required ran to $80,000 a year. She said she did not expect the full amount to be covered, but felt some of the treatments, including speech therapy and occupational therapy, should be at least partially covered.
“I appreciate that given the level of expense for these things there is a limit,” she said. “What I have a problem with is that as soon as you mention autism nothing is covered.
“If a child has a car accident and they need 18 months of therapy to recover their speech that is covered,” she added. “If a child has never had speech because of autism and needs that same therapy, he can’t get it.”
She said many parents who could not afford the required level of therapy were effectively being told, “tough luck.” She said the ABA therapy had already had a huge impact on her child and was potentially life-changing for children with autism spectrum diseases.
Mervyn Conolly of the Health Insurance Commission, said: “We realise that autism is something that going forward we have to see how we can provide better benefits on an outpatient basis, but as soon as you start adding benefits that automatically raises the premium rates. “There is a razor’s edge between making it affordable and getting the right range of benefits. That is the challenge we have.”
He added that there was some coverage available for mental health treatment on an in-patient basis and through the wellness benefit for out-patient therapies.