Parents face challenge in finding schools for autistic children

THE dearth of public school spaces for children with special needs and the astronomical price tag to get a seat in private schools has triggered a cry for government intervention from a group of concerned parents whose children fall in that grouping.

One member of a group of concerned parents of specials needs children speaking with the Jamaica Observer recently detailed the struggles that cohort has been experiencing over the years in their fight to access education for their charges.

“Government primary schools don’t take autistic kids and because of that you have to look at preparatory schools and the cost is astronomical. For my son, we started him at a regular preschool but he was non-verbal, so he never spoke and they basically told us this was not the place for him. We moved him to a school that caters only for special needs; the fee is $418,000 per term,” the parent told the Observer.

“There are one or two private institutions that cater to special needs but the fees are in the hundreds. So for one child, you are paying $1.34 million and that doesn’t include books. Books are another US$300 and that doesn’t include the little fund-raisers they do and other little things you have to chip in. So between school fees and books, you are looking at $1.5 million,” the mother stated.

She noted that other private institutions which offer special needs programme alongside regular schooling, and which were more affordable, have since this year increased their fees by a hundred per cent consistent with a wave of fee hikes by preparatory schools for this new school year.

“So you find that yes, your child will learn but it comes at an enormous cost and for those preparatory schools that do take autistic children, they require a shadow and shadows are not cheap,” the parent pointed out.

Shadow teachers provide one-on-one support in classrooms to children and adolescents with special needs to help in the development of their academic, social, and behavioural skills.

Those teachers are provided through the ministry’s Special Education Unit. But according to the concerned parent, with the increase in school fees, shadows might not be interested in being on the sidelines any longer.

“Autistic children will feel the pinch because no longer will you get a teacher fresh out of teacher’s college who is going to come and be a shadow because everybody is going to find a government job because the pay is way more attractive. It’s very very difficult,” she noted.

“Finding schools for an autistic child is an enormous challenge you literally have to be begging schools to take your child and God forbid your child is a little on the hyperactive side, they will tell you no,” she told the Observer.

“So you find that because there is no system in place by the Government to accommodate all the special needs children that there are, you have to find private education and that is expensive and you are not talking about behaviour therapy that most autistic children have to do,” she pointed out.

The affordability of speech therapy and behaviour therapy, which is an additional cost, she says, is another bitter pill for parents.

“Speech therapy can cost you like $8,000 for half an hour. Jamaica has only two behavioural centres that I know of and per term it’s almost $300,000 per term for a child that goes two hours for one day per week. There are some children who go two days, some people can afford for their child to go three days because the research will tell you that the more therapy the child gets, the better their outcome, but how many persons can afford $600,000 per term for sessions?” the concerned parent wanted to know.

As for the prospects of these children for higher education, she says the outlook is bleak.

“The high school is even worse because most of them may not be able to do the Primary Exit Profile [PEP]. Only the high functioning, almost normal children will be able to. Most autistic children will not be able to do PEP. So you will have to find a private high school,” the parent noted.

Asked whether she thought her own child could sit those exams, the concerned parent said ‘no’ then recanted.

“Let me not say no because I am a Christian and I believe in God, because my son was non-verbal, he never said a word didn’t speak until he was five. We didn’t know he would ever speak. We would take him to church, prayed, anointed him and there came a point where I literally stopped praying. We bought software that we could communicate through and then one day he spoke,” she said. “So I am not going to say he won’t be able to do PEP, ideally he should be going in grade five now, but my son performs at the level between a grade two and a grade three. Unless there is divine intervention, he won’t be able to do PEP.”

The parent, who says she has spent years assessing different schools to see what they offer, when asked what it was that the State could do to ease the plight of children like hers said, “they can’t regulate them on the fees but certainly in terms of accepting them and it’s not far-fetched for the Government to set up special needs classes in their regular primary schools. It’s not, you are adding one class so you are hiring three or four teachers per grade so you have a grade one special, grade two, up to grade six”.

“So in terms of what the Government can do, they can incentivise special education. Most teachers do not want to do special education because when they think of it they think of ‘bad pickny’; the Government is focusing on science, technology, engineering, and math [STEM]. So they will incentivise those areas but you have to start from foundation. Incentivise more persons to go in special education so you can build out your infrastructure in primary schools so that average persons can afford it. We celebrate April as Autism Month. Every now and again, we highlight autistic kids but what about the development of the child,” she added.

In December of last year, director of the Early Stimulation Programme (ESP) Antonica Gunter-Gayle disclosed that the entity which caters to children 0-6 years with various types of developmental disabilities had been without a speech therapist for three years.

This even as the entity has been seeing more children with disabilities (CWD) calling on its services since the COVID-19 pandemic years.

“Our numbers have increased. I don’t know if because the children were home [for the prolonged period] and they were inside. I don’t know if this is because there wasn’t the exposure, the socialisation, the interaction. I don’t know if any of this has to do with it, but we find that a number of children especially the two, three-year-olds with speech delays, behavioural challenges, slow learners, cognitive problems, autism,” Gunter-Gayle told the Jamaica Observer then.

The entity is one of two which the United Nations Children’s Fund (UNICEF) says is “unable to effectively carry out” its mandate due to insufficient resources. UNICEF Jamaica in a study at that time said, “the ESP needs physiotherapists, speech therapists and behavioural therapists as well as more resources to increase service provision to CWDs in the parishes outside the Kingston Metropolitan Area [KMA]”.

The ESP is the main organisation providing services to children with disabilities in the 0-6 age bracket, making possible that at some point each child affected in this manner will have accessed the ESP’s service, UNICEF said.

UNICEF, in batting for “increased budgetary allocations” for the ESP and the Jamaica Council for Persons with Disabilities, said, “even though Jamaica’s high debt-servicing burden limits, to an extent, the monies it has to spend on social protection, there is room to significantly increase [from .02 per cent of GDP] the monies allocated to these two organisations.”

It said policies and programmes are needed to address the attitudes and norms surrounding disability, changes to legislation, allocation of financial resources, restructuring of administration processes and databases, management changes and reforms to the sector. According to UNICEF, it will take a concerted effort and commitment of all stakeholders to implement the recommendations to better serve the communities of persons with disabilities.

Friday gone the Mico University College Child Assessment and Research in Education (CARE) Centre announced that it is teaming with an American university to pilot a speech teletherapy service programme beginning with a select number of students.

Speech teletherapy service, which became popular during the COVID-19 pandemic, is when speech therapy treatment is administered virtually, for example, utilising Zoom video calling technology. The delivery model allows therapists to treat people in places that would usually not be easily reached.