High cost of treatment stresses parents of autism patients
A recent qualitative study conducted by researcher Daniel Brown suggests that the most stressful situation encountered post diagnosis by the parents of children with autism spectrum disorder (ASD) was the financial costs associated with treatment and care for their children.
According to Brown, the study, Challenges of ASD in children: Exploring coping strategies employed by parents of autistic children in Jamaica, which was conducted using formal interviews had all 10 participants – parents of children with ASD – highlighting the exorbitant expenses for therapy and related interventions.
In an interview with the Jamaica Observer, Brown said some children with ASD – depending on the severity – require 40 hours of therapy each week which is roughly $6,500 per session and approximately $260,000 per week. This would then mean parents could spend up to $1,040,000 per month for therapies and related treatments.
“ABA [applied behavioural analysis] is a form of treatment which requires 40 hours per week. In addition children with ASD need speech therapy, music therapy and some go to swim therapy. So there’s a lot of financial costs that goes into dealing with an autistic child,” he said.
In his research Brown asked: “In what ways has your life been impacted by the diagnosis?” All of the participants indicated that the diagnosis of autism has created significant financial impact for them.
Parent one stated, “It affected us [a] great deal financially,” and Parent two said, “I have gone from a position off being able to afford whatever I wanted to a position of lack, basically.” The great financial burden continued to be echoed by other participants. Parent six stated, “Financially for sure life was, life became different because cost of therapy and so forth are very, very expensive in Jamaica. So even like the cost for the diagnosis and so forth.” Parent 10 said, “The therapy is expensive so most of our finances have gone that direction.” The parents indicated that the financial costs caused them to shift their priorities and focus on their children’s therapeutic needs.
Brown also asked: “What challenges have you and your child faced since he or she was diagnosed with autism?” The parents expressed concern about the availability of special needs therapists in Jamaica.
Parent one stated, “We don’t have enough therapist here in Jamaica, and I think a lot of them, too, exploit parents.” Parent four highlighted the diversity and cost of therapies needed saying, “It is very expensive, you try to do an integrated situation in a traditional, you have those cost then you have the cost of other therapy.” Parent six added to the perspective on costs stating, “The therapies huge price tag, behavioural therapy…therapy four days a week, no twice a week for two hours and then one on one academics with a trained special education occupational therapist five days a week. And since it is all done privately that is a huge financial price tag for sure, and he also does speech therapy that is a huge price tag.”
Like most of the other parents, the costs add up. According to parent nine, therapy is “very expensive, I mean we do speech therapy, well $4,000 per hour of when we started speech therapy and we could only do it for once per week, and that came up to like $70,000 per term, school was $60,000 per term and therapy was a little over $100,000 dollars per term. So I mean everything was expensive”.
Brown added that most therapies are offered in Kingston, with about two therapy centres in Montego Bay, leaving other parishes with little options for children with ASD.
Further, Brown said ASD is not covered under insurance policies and parents end up bearing the brunt of the costs directly out of pocket.
“The child has a general need in order to access therapy or access the required speech therapy, and you have to pay for it because it’s required for the brain to learn. When everything comes out of pocket, no matter what savings you have, you are going to try and give your child the best outlook,” he said.
Brown subsequently made an impassioned plea to insurance agencies to develop policies that adequately cover expenses associated with ASD.
Vice-President, employee benefits sales and health operations at Guardian Life Limited Constance Hoo said in 2019, Guardian Life initiated the coverage of treatment in relation to autism on all group health plans. However, she said there are no plans in place to develop policies unique to ASD.
Regarding remuneration of autism-related medical expenses, Hoo said it is dependent on the details of the policy, the services and the coverage. Hoo further explained that on most plans, coverage is 80 per cent of the charge, but is capped at a maximum for each policy year.
Executive vice-president, Sagicor Life Jamaica, Employee Benefits Division Willard Brown said Sagicor Life Jamaica offers various types of health insurance for groups, employers and individuals, which provides extensive coverage for a wide range of medical-related treatments and includes treatment for people with autism in some of its insurance plans.
He added that the the level of coverage differs between health insurance plans and is based on the agreed upon benefits.
As to whether there are plans for the design of a policy specifically for ASD, Brown said, “Sagicor Life Jamaica remains committed to providing comprehensive health insurance coverage to Jamaicans, and is always looking at new product development guided by expert research based on the needs in the marketplace.”
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