Parents of special needs children appeal to candidates to make policy changes

Parents of children with special needs tell incumbent and prospective MPs of the many challenges they face, at a meeting at the Inclusion Cayman office on 25 March. - Photo: Courtney Platt

Four-year-old Matt can’t get into the same school as his sister. Eight-year-old Mary was bullied so much, her mum had to give up her job and home-school her. Ten-year-old Davey can only get 30 of the 300 therapy sessions a year he needs on his family’s insurance plan. Seven-year-old Peter’s school repeatedly threatened him with suspension and expulsion over his behaviour.

These are just a handful of the challenges faced by children with special needs in Cayman. Some are on the autism spectrum, some have ADHD and anxiety disorders, while others have physical disabilities or brain damage. What they all have in common are the struggles they and their families face on a daily basis.

Their parents, with the help of advocacy group Inclusion Cayman, have been sharing their stories of adversity, discrimination and financial hurdles with candidates running for election on 14 April, in the hope that the next government can introduce legislative and policy changes that will make their kids’ lives better.

One parent, Chelsea Flynn, told how five different schools refused to admit her son because of his disabilities, before she eventually found him a place him in a pre-school that catered specifically for children with special needs. “That’s not what I wanted for my son,” she said. She had wanted him to attend a mainstream school and go through an education system that allowed him to learn alongside ‘typical’ students.

At a meeting at the Inclusion Cayman office on 25 March, she told incumbent and prospective MPs, “We’re asking that the government needs to define the law whereby all students have access to inclusive education. There are years of successive studies that clearly show that inclusion is best for all children, so why do we still segregate children with disabilities from those that are typical in the Cayman Islands?

“In order for children like my son and other students to be successful, there has to be an overall level of accountability, and therefore the government should extend the SEN Code of Practice to all schools, not just to public schools. In order for the Cayman Islands to be a better community, we need to ensure all children feel like they belong.”

Under the 2011 Special Education Needs Code of Practice, public schools carry out early screening at reception or at Year 1 and monitor progress in later years. There is no legal provision to mandate that private schools identify special educational needs of students.

One of Inclusion Cayman’s aims is to find a way for these children to have an inclusive education. The group noted that it costs $6,000 a year to provide a child with a public school education, and $35,000 a year to educate a child at Lighthouse School, which caters to students with disabilities.

Parents at the meeting provided figures for the candidates, stating that in 2020, 10,749 children attended Cayman’s schools, and, based on United Nations statistics that estimate that 15% of a population has a disability of some kind, 1,600 local students have special education needs. Using that calculation, an estimated 6,000 adults and children people in Cayman are living with special needs.

An analysis of 47 studies worldwide over 40 years, involving 4.8 million students, has shown that children with and without special needs can both benefit from attending classes together, from an academic and social development standpoint, the group told the candidates.

Insurance coverage is a major sticking point for many families.

Kesrene Estrella’s son has Down’s syndrome. Shortly after he was born in 2008, he required two heart surgeries, the costs of which were covered by her health insurance, she said. Then she changed jobs. The insurance company her new employer used refused to include her son in her policy, stating that he had a pre-existing heart condition, which is common in children with Down’s syndrome. Three other health insurance companies also refused to cover her son. When she turned to CINICO, she was informed that her private health insurance company was obliged to provide coverage for her son. Following intervention by the Health Insurance Commission, after four months, the insurance company agreed to cover the boy.

While he now technically has health-insurance coverage, many of the therapies he needs are not covered.

“We are told repeatedly no, no, no, by our individual health insurance providers, that our children are not covered for the necessary medical therapies they so desperately need and require, and the parents must find the necessary funds themselves, out of pocket,” she said.

She outlined some of the costs her son’s care entailed to the seven political candidates who attended the meeting – more than $180,000 for open heart surgery, and $28,000 a year to cover 40 hours of applied behavioural analysis therapy a month. Another parent, who pays for the highest premium possible under her insurance plan, said her insurance company will only pay for one-tenth of the 300 treatments and therapies that medical professionals tell her that her child needs a year.

Estrella said that unless steps are taken to remedy the current situation, these children will grow to adulthood without being integrated into mainstream society and without having the chance to lead independent lives.

“We’re not asking government to pay for our children’s individual needs,” she said. “We’re asking you to mandate health insurance companies, to whom we are already paying monthly premiums, to do the following: 1) all individual health insurance coverage should be transferable regardless of the pre-existing condition; 2) assessments should be 100% covered within the current provision; and 3) to include minimum coverage of medically required treatments of 96 sessions per year. … The most basic plan should have the therapy coverage for all individuals with a mental, physical and learning disability, especially those from birth.”

The parents and Inclusion Cayman are continuing to meeting with candidates in the run-up to the election.

(Editor’s note: The names of children in this story have been changed for privacy reasons.)

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