Back to school: parents spend more for special-needs students

BAVINA SOOKDEO

As the back-to-school season approaches, families across the nation gear up for the annual ritual of buying uniforms, textbooks, and school supplies.

However, for families with special-needs children, the cost of education takes on an entirely different dimension.

Saira Joseph La Foucade, the mother of two, sheds light on the immense financial burden faced by families of children with special needs, particularly those on the autism spectrum.

La Foucade's insights into the exorbitant expenses associated with specialised education and support offer a poignant perspective on these challenges that often go unnoticed.

Her journey has been one of determination and advocacy, driven by her personal experience as mother to a 15-year-old son, Matheaus, diagnosed with severe autism, and a 13-year-old daughter, Laila, who attends Holy Faith Convent, Couva.

Recognising the dire need for comprehensive care and education for individuals with disabilities, La Foucade founded the NGO Bethesda, for people with disabilities.

The organisation’s mission is to establish a group home offering temporary respite and full-time care for adults with disabilities, addressing a pressing concern expressed by families: "What will happen to my child when I die?"

With a commitment to this cause, Bethesda was granted ten acres of land by the RC church, demonstrating the recognition of this vital work.

In sharing her personal journey and insights, La Foucade highlights the intricate challenges faced by families of children with disabilities.

“The exorbitant costs of education, specialised tools, and transportation place an immense strain on these families, limiting opportunities for growth and development,” she said. “Government intervention is essential to create an inclusive and supportive environment that ensures every child has access to quality education and care, regardless of their abilities.”

La Foucade says the challenges start early in the education journey for children with disabilities. To enroll in a qualified special-education school, a psycho-educational assessment is a prerequisite, outlining the child’s official diagnosis. This assessment, by a clinical psychologist, comes with a price tag ranging from $5,000-$15,000, depending on the extent of evaluation. Given the long waiting lists in the public sector for diagnosis and appointments, many families have to turn to private assessments, adding to their financial burden.

She pointed out that for children with mild to moderate autism, specialised schools can be more easily found across Trinidad, with location and specific needs being key factors.

However, for children with severe to profound disabilities, the options dwindle significantly. Even special-education schools often focus on academic achievement, leaving these children with very limited choices.

La Foucade emphasises the scarcity of schools that prioritise life skills over academics, underscoring that only a handful exist across the country.

She highlights the Aspirare Learning Community, where her son Matheaus is enrolled, as a saving grace. This institution caters to low-functioning children on the autism spectrum, offering an environment that fosters their holistic development. However, the cost of such schools can be daunting, ranging from $1,500-$4,000 a month, depending on the level of support required.

The financial challenges extend beyond tuition fees.

Transport is a major obstacle, as children with disabilities often require an aide for safe commuting. Transport costs are marked up by ten per cent, further exacerbating the burden.

La Foucade illustrates that transport costs can surpass school fees, making education a distant dream for many families. The costs can reach as high as $6,000-$7,500 a month, adding to the overwhelming financial strain.

She noted that in addition to tuition and transportation, specialised tools and materials are essential for the education and well-being of children with disabilities.

For instance, a weighted vest – which aids in sensory processing and calming – can cost anywhere from $650-$1,250.

As La Foucade pointed out, government support for families facing these challenges is limited. While a special-child grant of $1,500 exists, it only applies to children diagnosed as severely disabled with a lifetime condition. The schoolbook and uniform grant is inaccessible to families receiving the disability grant.

Insurance coverage for disabilities is virtually nonexistent, leaving families to bear the brunt of medical expenses. La Foucade's example of her son's dental surgery costing $9,000 underscores the need for comprehensive insurance coverage.

Government help needed:

La Foucade's advocacy highlights several critical areas that require intervention by the government:

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Transport: Government intervention is necessary to provide accessible and affordable transportation directly to special education facilities.

The existing ELDAMO bus system, limited to people over 65 and the disabled, needs to be expanded to include caregivers and guardians who can provide crucial assistance.

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Subsidies: Importing sensory tools and equipment is costly because of shipping and clearing expenses.

The government should consider subsidies to reduce the financial strain on families seeking these essential resources.

•
Therapy: Access to speech, occupational, and behavioural therapy is paramount for children with disabilities.

Government-supported public options for these therapies would significantly alleviate financial burdens on families while aiding in the holistic development of these children.

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Inclusive education: Collaboration between government agencies and paediatric clinics can ensure children registered with the Health Ministry have access to appropriate schools and support.

The special-child grant should be accessible to all children facing additional educational needs.

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Equitable compensation: Teachers in special-education schools deserve equitable compensation, reflecting their dedication to providing specialised care and education.

Resources should be distributed evenly among registered special-education schools and NGOs.

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Awareness and recognition: Designating December 3 as International Day for People with Disabilities could be an opportunity for the government to raise awareness of the work of relevant NGOs and their impact on society.

This could facilitate corporate support and recognition for the vital work these organisations do.

Packing the book bag

La Foucade offered the following as a reasonable list of school supplies for a child with special needs (who is moderately to severely affected and in a special-education school)

• Triangle pencil grips – $12 for three – to help hold a pen/pencil/crayon.

• Play dough shapes and tools – $75 – fine and gross motor skill development.

• Blunt-tipped needles – $10 for one – fine motor skill development, to help develop hand co-ordination.

• Jumbo tweezers – $30 for one – fine motor skill development, to help develop hand co-ordination

• Therapressure brush – $20 for one – helps desensitise skin to regulate when sitting next to others (keep two).

• Weighted vest – $650 for one – helps calm when overwhelmed by senses or emotional disturbances.

• Weighted vest for over 100 lbs – $1,250 for one – for bigger children and children with sensory processing disorder.

• Sensory letters – $200 – all 26 letters.

• Sensory numbers – $185 – numbers one-21.

• Magnetic drawing board – $165.50 – this is much better than a copybook.

• Fidget items – $20 – fidget items are excellent for keeping children occupied and there are many options. Every child should have a few.

• Any Melissa and Doug puzzle – $200 – if nothing else, a wooden puzzle is a must.

• Chewy tools – $100 – must be personalised (cannot be shared).

• Daily visuals checklist kit – $200 – helps visually establish a routine and pattern school/no school (optional only needed when starting school).

Then there are regular items like colouring books, dot-to-dot books, tracing letters, numbers books, drawing books, all at an average of $20 each.

The Royard’s tracing books for special needs children range from $30-$60, depending on skill levels.

The writing materials should all be jumbo versions (jumbo crayons, jumbo pencils and jumbo coloured pencils, with the books being a large single page pattern).

If we use two of each type of book and one pack each in crayons and pencils, this averages $100 in books and $100 in items.

Total cost per book bag would average $2,500 with no textbooks (if textbooks are required).