Learning that a child has special needs or is autistic can throw families into a tailspin. Once the condition is understood and accepted, families must confront the implications it will have for their child’s development and future. The next step is navigating the therapy and schooling options and formulating the best treatment strategy.
In Cayman we are fortunate to have a strong network of professionals specialising in therapies for autism. The cost of treatment, however, often prohibits families from participating in the full extent of recommended therapies. Many families cannot afford the ‘gold standard’ of care that professionals might advise. However, with the assistance of a number of organisations that are giving autistic children and those with special needs a stronger voice in our community, there is reason for optimism for autistic and special needs families.
– Jennifer Marshall
If you suspect your child is exhibiting worrying behaviours or is lagging behind their peers in reaching developmental milestones, your first point of contact should be your paediatrician who can carry out an initial screening. Appropriate referrals can then be made to a clinical or neuro-psychologist for further assessments, a process that can take from a few hours to a number of days. The Wellness Centre and Hope Academy are two organisations that can carry out a thorough assessment. However, depending on the complexity of the issues involved, the cost can range anywhere from CI$3,000 to CI$5,000. If your concerns are limited to a particular issue it may not be necessary to undergo a full assessment or seek an overarching diagnosis right away.
An alternative avenue for assessment and support, particularly for children with mild needs, is through the government-funded Early Intervention Programme (EIP), which targets school-readiness skills. The programme is free and provides services such as speech and language therapists, occupational therapists and special educators to Caymanian and non-Caymanian children on a needs-basis. The frequency of therapies varies though, depending on their resources at any given time.
Health professionals in Cayman agree that early diagnosis and intervention through evidence-based therapies is crucial to maximise development in autistic children, particularly up to age eight. As one specialist explains, “when treated at the earliest opportunity, incompatible behaviours have less time to become ingrained and functional – the young mind has huge potential to adapt and re-learn positive behaviours. Left untreated, deficits in behaviour and development become more complex and difficult to change over time.”
The best-established form of therapy for children with autism and developmental disabilities is Applied Behaviour Analysis (ABA), which uses the principles of learning theory to improve social behaviours and functional skills.
Depending on the severity of the condition, specialists might recommend a child receive 20-40 hours per week of intensive intervention. Given that the average cost of such therapies is approximately CI$175 an hour, this could add up to nearly CI$30,000 a month, a cost that is prohibitive for most households.
Local health insurance companies often do not cover these evidence-based intervention treatments, and if they do, it may only be up to US$1000 per year. CINICO insurances seems to provide the most comprehensive coverage for these therapies, but it is certainly not enough to cover the costs of one-on-one full-time ABA therapy. Indeed, some families have been forced to leave Cayman to access more affordable healthcare and schooling elsewhere.
The Lighthouse School is a government school that provides specialised services for children aged five and older. Children who have been through the Early Intervention Programme and are ‘in the system’ will have an easier time getting into the Lighthouse School. Caymanian children are always given priority if the school is close to capacity.
Hope Academy is a private, co-educational school that provides a full education programme, tutoring, therapies and after school-programmes for children of average to above average intelligence (including those with mild autism, ADHD, anxiety disorders, etc.) whose needs might not be met in a typical school setting. Therapies come at an additional cost, but take place on campus making it a convenient option.
Places for special needs or autistic children in mainstream private schools are hard to find as many do not have the resources to deal with special needs beyond learning support associated with particular subjects and skills. There is currently no government funding to assist low-income families with the costs of private therapies or schools. The availability of therapies in government schools varies from year to year, depending on resources.
Some families have formed small home schooling groups with a special needs professional as a substitute for, or as a way to supplement, individual ABA therapy sessions. Families can thus share the costs and provide a social and structured small-group learning environment.
Cayman ABA offers individual and group therapies for children with autism. Some services are offered at lower rates and some scholarships and pro bono services are provided on a case-by-case basis.
The Autism Society of Cayman Islands aims to provide a support network and funding for families impacted by autism, and to advocate for better access to health insurance.
Although some special needs and autistic children could benefit greatly from being educated and socialised in the mainstream system, Cayman does not currently provide such an inclusive school environment. However, the Special Needs Foundation of Cayman is striving to change this, however, by spearheading an Inclusive Education Programme whereby special needs children would be included in mainstream schools.
Susie Botten, executive leader of the foundation, explains that this would not only have financial advantages, but also educational ones: “It is no more expensive to be fully inclusive: it is expensive to segregate. Evidence shows that typically, developing children do better in exams when schooled with special needs children, the overall quality of teaching across the board improves which benefits everyone. Tools used in teaching special needs children provide a whole variety of learning styles that help all children to learn more effectively.”
Many families affected by autism can lead an isolated existence when it comes to socialising and integrating their children in daily life. Activities that so many of us take for granted – eating in restaurants, visits to the dentist – can pose significant challenges for children with special needs and autism. Including these children in the conventional school system would be the first step to enabling them to become independent contributing members of the community.
Only through enhanced awareness can we encourage each other, and ultimately our society as a whole, to support vulnerable families engaged in the deeply personal and financial struggle to care for their children.
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