Disabled Children in a Disjointed System

In Qatar, there are thousand of disabled children, their mental and physical handicaps representing a real gap between them and the rest of the society. Is our comprehensive system of hospitals and schools helping or hindering the handicapped?

Jasim Abdul-Rahman Al Haydous has never missed a single day of class at Abu Baker Aseedeq Preparatory Independent School for Boys. Every morning he enters the Principal's office with a cheerful greeting, then saunters down the hallway in a faintly lopsided gait. He is familiar with the corridors - on the left are photos of HH Sheikha Mozah bint Nasser Al Missend when she visited his school and asked him what he wanted to be when he grew up (pilot), and around the corner is the gymnasium where he plays basketball with his friends. Like his classmates, he enjoys action movies, loves cracking jokes, indulges in PlayStation 3 gaming after school, and hates it when his mother fusses over him too much.

But in many ways, he is unlike the other boys in eighth grade. His thobe is unwrinkled and fingernails clean. He is the only one with a beard. Jasim is 19.

"I remember everything," he says in stilted English. "I get out, the car hit me. Big car." His hands re-enact the accident, the right swerving through the air and clumsily hitting the left palm. Both his right hand and leg are weaker than their counterparts, a condition that gives him a steady limp and a gentle handshake. During the conversation, he sits resolutely still with his left hand protectively clutching the right on his lap, or with both placed palms-down on each thigh. He speaks in fairly fluid sentences, but reads Arabic at a first grade level.

A week before his sixth birthday, Jasim was hit by a van while playing across the street from his house. His mother, Nouriyah Naser Al Hasani, then nine months pregnant with her fourth child, rushed outside. Without shoes or abaya, she flagged down a vehicle and passed her son's body to them through the open car window. After spending 45 days in coma and two weeks of intensive care, Jasim returned home. His mother felt like she had brought back two babies from the hospital. Traumatic brain injury reverted Jasim to a stage of experiencing everything for the first time, from touch to motion to speech. In mere seconds, he had joined the ranks of Doha's disabled children.

The invisible condition
A disability is not categorical. It spans a spectrum of different skills, weaknesses, tendencies, and physicalities. There are the deaf, the blind, the autistic, the emotionally-disturbed, the mentally-challenged, those with behavioural disorders, and those with learning disabilities (LDs). Even then the diagnosis ranges from mild to moderate to severe, and the score of overlaps and in-betweens makes it impossible to definitively cluster disabled individuals into one group.

One constant is that a disability, unlike a disease, cannot be cured. It can be treated, sometimes with medication, but it is a fact of life. Accepting this truth is a difficult step before families can even begin to plot out the future. Perhaps harder is the realisation that the disabled here face a support system - individual special needs schools, ineffective government programmes, and piecemeal medical treatment - that is crippled itself.

In Qatar, there are thousands of children with mental and physical impairments. The former far outstrips the latter. Last year, school clinics diagnosed 895 mental and behavioural disorders and only a handful of severe physical conditions like cerebral palsy and deaf mutism, according to the 2008 Annual Health Report released by Hamad Medical Corporation. And yet there exists a misunderstanding about the most prevalent mental disorders, including Attention Deficit Hyperactivity Disorder (ADHD) and LDs, which fall into three arenas: reading, writing, and mathematics, also classified as dyslexia, dysgraphia, and dyscalculia.

Though some may not appear immediately debilitating, handicaps represent a real, and often insurmountable, gap between the disabled and the rest ofsociety.

"If you're born without a leg, will you ever race as fast with a prosthetic device?" says Zeta Hitchock, Head of Clinical Services at The Learning Centre School. "No. There is a lack of information about what a real learning disability is and what that really means. It's a true difference. You don't catch up per se; you learn how to cope with it so you can be effective. That's what makes an LD difficult to understand because it's invisible. You can't see it."

LDs affect children of average to above-average intelligence, decreasing the speed by which they grasp certain concepts, retain new knowledge, and perform mental calculations. Hitchcock points out that, even with treatment, the learning gap only widens. At the end of a school year, a regular student will have learnt nine months of material, while a child with an LD may only have advanced four months. By the next year, the first student has gained 18 months, and the disabled student only eight.

Technology, such as audio books and mini-recorders for class lectures, are useful tools to facilitate learning for the disabled. Helpful too are steps Qatar has taken: creating the Shafallah Center for Children with Special Needs, establishing the Family Consultation Center, and in 2007, signing the UN Convention on the Rights of Persons with Disabilities. But while the government may have enshrined disability rights, those on the ground are not entirely engaged.

"Not everyone comes to a hospital here," says Dr Abdulbari Bener, Head of the Department of Medical Statistics at Hamad Medical Corporation. "Some people hide information about the family; they feel guilty to allow their children to have a syndrome or disease." He believes the causes of disabilities are also neglected by nationals. The risk of bearing children with deafness, asthma, congenital malformation, and ADHD are statistically higher for those who marry within their own family. This is especially alarming for Qatar, which has an over-all consanguineous marriage rate of 54 percent, the highest in the world behind Egypt and Saudi Arabia, according to Dr Bener's 2006 article in Pediatric and Prenatal Epidemiology.

But the roots, and thus treatment, of most mental disorders are multi-factorial, a combination of genetic tendencies and environmental conditions, says Dr Ehsane Gad, Specialist at Hamad Medical Corporation's Department of Psychiatry. "Treating the child is not enough medication," she says. "We treat him as a person, see if the family has some effect, if the school has effect. We treat the child as a whole."

Stuck in the system
Qatar lacks a comprehensive children's hospital for its nationals and residents, one offering surgery, rehabilitation, emergency services, psychiatry, and physio-therapy. Children with suspected disabilities are typically referred by their school health offices to the paediatric or psychiatric departments of a public hospital, whereupon parents can further consult private specialists. A 217-bed comprehensive facility, modelled after Toronto's SickKids hospital, is slated for completion in 2011. The year after, Qatar Foundation projects its 412-bed Sidra Hospital for children and women will be fully operational. Until then, families must navigate the advice and aid of a multi-tiered system whose own workforce calls it flawed.

"Not only for ADHD, but asthma, obesity, anaemia, and any other disorder should really be supported by school health," says Dr Bener. "Unfortunately the school system is always changing; I don't think they have great acute health programmes. My kids go to private school, and even they don't have such a counselling system."

Many private schools in Doha, such as the Qatar Canadian School, indeed maintain admissions policies discouraging moderately disabled applicants. A school with a thin budget and hundreds of students lacks the wherewithal to house a complex special needs programme. A teacher with a full room of children and an hour of class-time lacks the capacity to concentrate individual attention on one or two disabled students. Some parents turn to smaller institutions with lower student-teacher ratios and accredited therapists on staff, such as the Shafallah Center, which specialises in working with autistic children.

The Supreme Education Council (SEC) mandated its own individual needs programme for the 110 semi-independent schools in Qatar, which receive government funding but operate autonomously. The bedrock of its programme, implemented in 2005 and still in pilot stages, is that physically or mentally disabled students should remain inside the regular classroom, with specialist provision on a case-by-case basis. Jasim's school was one of the first to undertake the plan, and it did so successfully, winning the regional Sheikh Hamdan Bin Rashid Al Maktoum Award for Distinguished School in 2008. But there are cracks across the board.

Only 42 percent of all schools in Qatar provide access for physically-hand-icapped students, such as ramps and elevators, according to the School and Schooling in Qatar 2007-2008 report released by the SEC. The same report reveals 80 percent of schools offer remedial services, and faculties feel generally un-satisfied by a lack of support for under-performing students.
 
"Everybody knows that Abu Baker has a good programme, but it's not good for the teachers," says Ahmad Jawdat, the School's appointed Learning Difficulties Coordinator. "They always complain, 'I need help. I have 25 students, and this case needs a specialist.'"
 
Every day, eight boys out of 650 are extracted from their regular class schedule and brought into a special needs classroom for two hours. The room is a mishmash of primary colours, with two computers and an assortment of children's books. Here the LD students seat themselves around low U-shaped tables, surrounding a teacher tucked into the bend and armed with SEC plans and worksheets.

"The SEC always tells us to try to work with them inside the class," says Jawdat.
"They say you have big buildings, good personnel who can work from what you already have. But it's not easy, especially with a ninth grade student who you can see is really in grade one."
 
His solution is increased funding for one-on-one tutoring time and staff specialists; he says the school currently receives QR3,000 a year per student and pays QR10,000 a month for a math teacher.

Both Jawdat and Hitchcock agree with the SEC - the ideal is to integrate disabled children within the regular classroom. But they believe the current system lacks the resources to do so while developing them to their maximum potential. "The child is not made up of just a learning programme," says Hitchcock. "They're made up of all things that go into a person. And when you so isolate them into a full-time programme, you deny the rest of that person the opportunities of normal exposure. Still, you can want to do this in a regular classroom, but you are setting teachers up to fail if you do not give them the resources to be successful."

Although wholehearted, the current framework of hospitals and schools is not wholly effective. In order to prevent disabled children from getting lost in a Darwinian landscape, Qatar requires proper training for teachers, widespread community acceptance, and across-the-board specialists hired for individual evaluations and developmental therapy. For now, unable to rely entirely on a comprehensive system, those who need help most must empower themselves.

Training for life
Principal Yousef Al Bassam initially doubted Jasim's opportunities at his school. Now, after years of watching Jasim's steady progression, he has a plan: Put Jasim through twelfth grade while teaching him simple skills, like photocopying or delivering packages, then connect him to a company with an equal-opportunity employment programme.

"Jasim's story is a unique story," says Al Bassam. "He is a happy person, willing to participate and communicate in this community. His mother understands and accepts her child's situation, and it makes things easy for Jasim, the family, and for us as well."

While other 19-year-olds are sweating under academic deadlines and questions of life, Jasim is unusually at peace with himself. He struggles to come up with complaints about his life, a short list that includes bad dreams and eating hammour. The things he does like bubble out of him at random, painting a rough connect-the-dots portrait of a teenage boy - swimming, bodybuilding, going to school, playing on the computer, studying English, and having "too many friends'. When he draws, contentedly and without reserve, from his pen emerge the possessions of a dreamer: a cockeyed bird, a smiling chef, and a giant plane touching the edges of the paper.

"I feel better now," he says, recalling the accident over a decade ago with tentative smile. "I'm improving."
 
Then he waves his teachers away, insisting that he alone poses for a picture in front of the crooked message he wrote to nobody in particular - "I am Jassim. Champion."