High costs, long wait prevent early diagnoses of developmental disabilities

At least one mother is pleading for local courses for parents of children with developmental disabilities, as recent efforts to get help for her autistic two-year-old daughter has left her emotionally and financially drained.

*Nicole, said her desperate search for help for her daughter started after she realised she was not reaching her development milestones.

But efforts to have her child diagnosed by the few professionals in the public system has left her even more distressed as she was told that her daughter was either too young to be diagnosed or that they had a long waiting list.

The mother laments the fact that although parents are continuously told that early intervention is key, the current state of affairs does not allow for early diagnosis which is the first stage to treatment.

She said that when she checked with the Early Stimulation Programme, she was told that her daughter could not be fully assessed until April because they had a long waiting list.

However, after assessing her developmental stages, it was found that she tested low for some of them.

Nicole said she then sought out the services of a development paediatrician and took out a loan to pay for having her daughter diagnosed. The consultation cost her $10,000 and then further assessments would cost her $15,000.

Given the diagnosis, the mother said she started searching for a specialist such as a speech therapist and a behavioural therapist to do a behavioural assessment; however she found that they too were very costly and had a long waiting list.

In the case of a speech therapist, she found that she would need to find as much as $18,000 for initial consultation and then $8,000 per hour for each session. 

A behavioural therapist would cost her as much as $10,000 for the initial assessment and between $5,000 to $7,000 per session.

Nicole said she is prepared to do all she can to help her daughter, but she wishes there were cheaper options for parents who are just not financially able to pay for these services and more therapists to offer them. Those she checked were unable to give her a timeline as to when they could start working with her child, because they had other clients working with.

“This brings me to the part where I had started researching for courses, because I have to be sitting down and waiting for their vacations to be over. They have to take vacations, they have family time, you can’t take that away from them and they have sessions throughout the rest of the year,” she said.

When The Sunday Gleaner contacted speech and language pathologist Michelle Skeete, she admitted that treatment can be costly as the five speech pathologists in the island are all working in the private sector.

Skeete said the fact that they are in the private sector means they have to pay rent and other operating costs which contributes to the cost they determine per session.

As far as she is aware, all were trained overseas, as there is no local programme for those wanting to go into this area.

“In the States, a lot of them are government sponsored, we are not government sponsored; none of us work in the government system at this point,” she said.

She said because there are so few of them, they are also in demand.

“There are just so many bodies and so much that you can do in one day,” she said.

“Most of my practice is autistic children on the spectrum. And you will find most everybody is saying the same thing because they (autistic children) are out there,” said Skeete, who has been practising since 1996.

The speech and language pathologist said she usually gives parents activities to do with their children in between sessions and during the holiday period, to cut down on the number of sessions parents would have to pay for, but she finds that not every parent is willing to do all that is necessary to aid in their children’s improvement, as assisting a child with a development disability does take time and patience.  

Child psychologist Gemma Gibbon said she can very well understand Nicole’s effort to get help for her child as soon as possible and advocates this as well for any other children with development problems.

“There have been huge strides and progress made with an autistic child when it is identified as early as possible, because the brain has plasticity which means it’s still in the process of creating its pathways,” she said.

“There is a big chance that you can reduce the severity to a level where you can get on in life with assistance rather than being completely dependent on your parents,” she added.

Gibbon, who was trained in the United Kingdom before relocating to Jamaica 10 years ago, finds that there is a shortage of specialists in the island to assists children with developmental challenges. As the principal for a special needs school in Kingston, she has to interface with many parents like Nicole who wish there was more help in the public sector as she finds that those in the private sector are too expensive.

But until the number of specialists can be boosted, Nicole thinks it would be helpful for local universities to start to offer courses to parents and caregivers of children with autism and other developmental disabilities, so they do not have to feel helpless.

“I’m looking at my daughter now and I am wondering what can I do to help you? I go on the Internet, I Google, I YouTube and I read and I try to apply it. But I wonder, am I doing it correctly?  If there was a three months short course now or there was a six months short course, I would stay up at night and learn, just so I can help her,”  said the mother who said she had also tried making contact with local support groups, but found that they were not very accessible.  

nadine.wilson@gleanerjm.com

*Name changed