When autism becomes a business

A genuine therapist can be a friend for life.
A genuine therapist can be a friend for life.

DR RADICA MAHASE

LAURA is seven-years-old. Four years ago her parents were told by her preschool that she has signs of autism and she should be diagnosed by a professional. Her parents took her to a therapist (they weren’t sure what kind of therapist) and they paid $6,000 to have their child diagnosed. The therapist’s report noted that Laura had “medium-functioning autism” and that she required speech and occupational therapy.

Laura’s parents were very worried and desperately wanted to help their child so they dug into their savings to be able to access both speech and occupational therapy. They paid $4,500 for an evaluation at the occupational therapist and were told that they had to bring her twice a week for one hour sessions; at a cost of $300 an hour. The speech therapist charged them $3,000 for an evaluation and also told them they needed to do two hours of speech therapy per week, at $250 per session.

In the first six months of “discovering” Laura’s autism, her parents spent about $38,000 on just diagnosis and speech and occupational therapy. Laura’s mother is a clerk in a government ministry while her father is a teacher in a secondary school. With middle-class earnings, they simply could not afford to continue with four hours of therapy a week and so they had to cutback. With the increasing cost of food and Laura’s special diet, medical bills, etc they eventually had to stop therapy completely.

The Centre for Disease Control and Prevention in the USA has estimated that it costs US$40,000 to $60,000 to raise a child with autism per year. This figure does not include medical costs. Also, this figure excludes various therapies as these are available to special needs students as part of education services in the USA. The reality is that the cost of raising a child with autism will be much higher in TT, as parents have to pay for private special schools and all forms of therapies. Even if a child is attending one of the government’s special needs schools, the various therapies are only accessible privately.

Therapy can be invaluable to a child’s development.

It is important to point out that TT signed and ratified the UN Convention on The Rights of Persons with Disabilities. This country is therefore obligated to provide for all citizens regardless of type of disability. This means that education, medical care and therapy should be accessible and affordable to all. This can only happen when they are provided by the government within the public service – public schools as well as access to all forms of therapy in the hospitals/health centres. As long as therapies and services can only be accessible privately then parents/ caregivers have no choice but to pay what is asked. Parents are held hostages to therapists who decide costs of evaluation and therapy sessions as there are no agencies regulating or standardising the cost of these services. Presently, any individual can open a private practice and charge whatever fees they choose. While it is up to parents to decide if to take their child, most parents are just so desperate to help their children that they will do whatever it takes to make sure that their children can get the therapies they need. Unfortunately, we live in a society where autism has become a business and within the last few years there has been a proliferation of autism-centred services. From the furniture stores advertising sensory-friendly furniture to the clothing stores advertising sale on blue clothing in April (never mind that the autism ribbon is multi-coloured and not blue!), schools that do not have teachers qualified or trained to teach special needs children are suddenly marketed as special needs schools. Horse therapy, kitten therapy, play therapy, movement therapy are suddenly available and widely advertised.

Imagine then, the plight of the parents and caregivers of those with autism, who are pressured to find the extra money to pay for all these therapies and services. When they cannot afford it, they are made to feel like they are not doing enough for their children and they are failing their children.

The sad reality in this country is that when parents cannot afford the few genuine therapists and special schools, the children remain at home. The years go by and they get no real meaningful intellectual stimulation, they do not get the opportunity to develop and they become marginalised, hidden and forgotten.

Dr Radica Mahase is founder/director of Support Autism T&T

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"When autism becomes a business"

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