DR RADICA MAHASE
Nicole, an autism mom stated, “I don’t have money to pay for all the therapy that my child needs so she is struggling. I have to choose which ones I can take her to and this is after we budget properly so that she can get whatever she needs.
"We are average middle-class parents. My husband teaches and I supplement our family income by baking cakes, after I had to resign from my bank job to take care of our daughter full time. The bulk of our income goes into taking care of our daughter – she has a special diet because she cannot digest certain foods; we buy specific supplements for her; we pay for a private special needs school because no public school would accept her; and well, we take her for therapy.”
According to the USA Centre for Diseases Control and Prevention, “Currently, no treatment has been shown to cure ASD (autism spectrum disorder), but several interventions have been developed and studied for use with young children. These interventions may reduce symptoms, improve cognitive ability and daily living skills, and maximise the ability of the child to function and participate in the community.” Each individual on the autism spectrum displays different levels and areas of development and as such, will need different types of interventions to help them.
In Trinidad and Tobago, when a child is diagnosed the development paediatrician would usually suggest the types of treatments needed – dietary, medical or communication and behavioural. The most common forms of therapies needed by both children and adults on the autism spectrum are speech, occupational and development therapy. This is where the challenge lies.
First, parents and caregivers have to pay for an initial assessment and based on this, the therapist will decide if they can work with the child. One parent complained that she paid $3,000 for an assessment at a development therapist and another $500 to get a written report of the assessment. Then the therapist said that she could not work with the child. She went to another therapist and was told that she would have to do another assessment at the cost of $2,500.
Secondly, it is recommended that a child should get at least 15 hours of therapy a week. In our country, the various therapies are available privately at a cost ranging from $200 to $450 for a session. Sessions ranges from 30 minutes to one hour depending on the therapist. If a child is to get the recommended amount of therapy it would cost the parent/caregiver between $3,000 to $6,750 per week. That is definitely out of reach of an average middle-class family in TT.
As parents/caregivers find it more difficult to afford various forms of therapy for their children, therapists have implemented more restrictive measures. Many are asking parents to sign contracts for a minimum of ten sessions, with payment upfront, and no reimbursement if the child does not attend a session.
According to one parent, “I really wanted my child to do the therapy so I signed the contract and paid $4,000 for ten sessions. However, after the third session my child refused to go to that therapist. He was uncomfortable with the therapist and hated the sessions. In the end we missed five sessions which we had paid for.”
A word of advice to therapists – word of mouth is the best form of advertisement, and parents are very vocal about their negative experiences in their networks and WhatsApp groups. They very quickly strike down therapists who they perceive as "running down money" or those who they believe do not really have their children’s interest at heart.
The situation in TT regarding therapy is only this ridiculous because of the lack of equal access to therapy within the public health care and education systems. The Ministry of Health and the Ministry of Education have failed to sufficiently restructure their failing systems so as to make a significant change to the unequal access to various therapy services for children and adults on the autism spectrum.
Consequently, unless you belong to the upper class, it is very difficult to afford more than two hours of therapy per week for your child. It is no surprise then, that therapy, one of the most important interventions needed for people on the autism spectrum to develop mentally and intellectually, is a luxury item in TT – a luxury that lower/middle class parents like Nicole cannot afford. Instead of an everyday intervention tool, therapy symbolises a sense of elitism and it reflects the survival of the richest.
Radica Mahase is the founder/director of Support Autism T&T