Right By Your Side

By Catherine Tse

Parents are their children’s greatest advocates. So when the diagnosis comes in, when suspicions are confirmed, when reality sets in that your child has a disability, what do you do next?

While the Canadian Charter of Rights and Freedoms guarantees people with disabilities equal protection and equal benefits of the law, it is often the parents, valiantly fighting to uphold these rights and freedoms for their children, who frequently find themselves ostracized by the same system that is supposed to protect their children. Parents of children with disabilities also have rights and resources. Parents shouldn’t be marginalized, but respected.

One weekend in late October, 2001, Eric and Nina Fraser took their seven-month-old daughter, Sonia (the family’s names have been changed), to Ottawa’s Children’s Hospital. Sonia had started teething the week before, and was struggling with the typical pain, crankiness and a fever. Still, Eric and Nina were beginning to notice that Sonia was displaying signs that weren’t so typical. They weren’t sure what was going on, but they knew that something was wrong.

Both Eric and Nina took the following Monday and Tuesday off work to stay with Sonia at the hospital and to their keep their family updated on her condition. She was undergoing tests and observation, but so far, nothing had been confirmed.

Nina worked on contract for the federal government. Eric was a chef at a trendy restaurant in Ottawa’s market area. It wasn’t difficult for Nina to take emergency leave, considering her child was in the hospital and that her colleagues all knew what a difficult time she and her family had been having while Sonia was teething. Eric also arranged to take the two days off to stay with his daughter. By Tuesday, it was discovered that Sonia had been having petit mal seizures, and she was scheduled for an MRI.

By the time Eric and Nina returned to work on Wednesday, they were feeling "terrified." Nina was met by colleagues who were concerned, sympathetic and supportive. Eric, however, was greeted by an assistant manager who told him he was fired due to "insufficient hours and poor performance." He was asked to finish off his hours for the week and hand in his apron.

Without any notice or previous warnings, Eric was suddenly deemed inadequate. Was it him, though, or his circumstances, that had suddenly become unsavoury?

Eric and Nina feel that it was Sonia’s new status as a child with a disability - epilepsy -that resulted in Eric’s sudden dismissal from a job where there had been no previous sign that anyone was unhappy with his performance. Both Eric and Nina had explained to their colleagues that Sonia’s current condition required regular monitoring, follow-up trips to doctors and, possibly, emergency returns to the hospital. For Eric, this would impact on his ability to work overtime and on short notice. This, the couple feels, was the reason he was fired.

Clearly, the Frasers had enough to worry about. Nina was working only on temporary contract, Eric had just been fired without notice, and their daughter had been diagnosed with a serious condition. But as Eric and Nina struggled to support Sonia, their own needs and rights fell by the wayside.

The rights, resources and responsibilities pertaining to people with disabilities need to be viewed more holistically. Parents have every right to expect that their own needs and concerns are addressed and respected; they should be encouraged to seek resources that will support them in times of struggle; and they must realize that they owe themselves the responsibility of looking after their own needs, which, in turn, will enable them better to help those around them.

Many parents of children with disabilities speak about feeling vulnerable - of lacking self-esteem and losing much of their self-identity as a parent. Emotions can also be raging, leaving family members exhausted. Parents need to empower themselves with information right from the very start. Knowing what you are dealing with is half the battle; the other half is leaning how to make this information work to your benefit. As Nina Fraser affirmed, "The best support is through self-education. Find out everything there is about [your child’s] condition."

Once parents know more about what it is they are facing, they can figure out how it is going to impact on them - and possibly other family members. For Eric, the implications in terms of his job were immediate and disheartening.

The United Nations Declaration of the Rights of Disabled Persons provides in Section 8: "Disabled persons are entitled to have their special needs taken into consideration at all stages of economic and social planning." And as the primary caregivers of their child, parents need to ensure that their own economic and social situations are looked after.

In the Frasers’ case, the manner in which Eric was let go from work was not only ethically devoid, but legally remiss. As Ottawa-based lawyer Les Vandor says, "There is a series of laws that, cobbled together, gives [parents] legal rights. These laws are the Human Rights Act, the Charter [of Rights and Freedoms] and the Employment Standards Acts in various provinces." Remember: rules and regulations vary province by province, so you need to ensure your research is specific for the region in which you reside and work. "Every province has a different set of regulations that govern their labour boards," says Vandor.

This type of information is available in every law library, and in some public ones. Universities often have law clinics as well, and can usually make a referral to a local lawyer specializing in the area in which you need assistance. There are even community groups, such as ARCH: A Legal Resource Centre for Persons with Disabilities, which strives for complete social integration for people with disabilities. ARCH works on precedent-setting cases, provides legal education and consultation, provides legal representation and offers a speakers bureau and workshops.

Harry Beatty, Director of Policy and Research at ARCH, is adamant about championing the rights of people with disabilities, and reminds us all that what we are ultimately trying to uphold is not special privileges for a select segment of the population, but fundamental, human rights. For example, under a specific set of regulations and conditions, all employees are entitled to take emergency leave from work. What the Frasers requested when they took two days off to be with Sonia in the hospital has been recognized by all labour boards as being one of these fundamental, human rights. Furthermore, the Supreme Court of Canada itself has recognized the need to adapt society so that its structures and attitudes include persons with disabilities.

Variations in provincial codes and rules prevent the listing of specific rights, but the principles underlying these rights are universal: inclusion, respect, accommodation and support. Whether these principles involve legal, education, social, employment, financial or other systems, they are here to protect and advance everybody’s well-being.

Legal Rights
This is the endemic force that underlies most of our society’s grievances. Get to know the Canadian Charter of Rights and Freedoms (or at least the sections pertaining to people with disabilities), even if just to appreciate the scope and magnitude to which we are all afforded basic human rights. For more specific concerns, go directly to law libraries for reference and assistance. And if parents need to speak with a lawyer, check out law clinics, law schools and legal aid organizations.

Education Rights
From daycare to preschool to high school, parents have the right to ensure their children’s needs are being met by qualified professionals in an environment that helps their child feel like they belong. Pursuing inclusion will remove barriers and provide support to the child, helping them become more independent and self-aware in a positive light. Parents have the right to ask for doctors’ certificates, special assessments, teaching assistants or anything else their child requires to receive the level of education that is necessary.

Social Rights
Your own social well-being needs to be addressed. Look for support groups in your area; parent-to-parent groups are often a source not only of information and support, but also of camaraderie and understanding.

Employment Rights
Refer to your province’s Employment Standards Act, or contact your local Labour Relations Board. Within a parameter of rules and conditions, all employees are protected to a certain degree; this includes taking emergency leave to take care of family members.

Financial Rights
Get to know disability tax laws, such as claiming the disability credit on your income tax return. If in doubt, consult a professional or call the Canadian Customs and Revenue Agency (CCRA) directly. Also, look for grants and programs for which you or your child might be eligible. For example, Special Education Technology in BC (SET-BC) offers loans of adaptive technology to people with disabilities attending school.

The last word goes to the Frasers, who have since moved beyond those tumultuous early days when Sonia was first diagnosed with epilepsy. They have also since filed a claim with the Ontario Labour Board, and are waiting for their claim to be heard. Their foray into the realm of disability issues has just begun, but they do have some words of advice to pass on:

* Be proactive. Do your research about your child’s specific disability. The Internet is a wealth of information, but also refer to books, support groups and your local hospital.

* Be open-minded. There are no magic bullets, and you will never find a perfect, blanket solution. Remain flexible and receptive to new ideas.

* Be firm. If you don’t like or agree with the advice you’re getting, go get a second opinion. Part of being proactive involves seeking advice from the experts, but you remain the parent and must retain the authority to say what is or is not appropriate for your child.

* Be diligent. When dealing with professionals (doctors, educators, lawyers, etc.), take detailed notes on everything: whom you spoke to and when, what was recommended and why, what the next steps are, and so on.

(Catherine Tse is a freelance writer living in Ottawa, Ontario.)