Toronto Star Referrer

In a tight spot

How inflation is affecting disabled children and their families

KHADIJA Z AFAR KHADIJA ZAFAR IS A SERVICE NAVIGATOR AT SMILE CANADA SUPPORT SERVICES THAT SUPPORTS RACIALIZE D CHILDREN WITH DISABILITIES AND THEIR FAMILIES. FOR I NQUIRIES AND/ OR QUESTIONS, PLEASE CONTACT: KHADIJA. ZAFAR@ SMILECAN.ORG

Inadequate government support, policy gaps, and a year of surging inflation: It’s the perfect storm that is hitting families with children and youth with disabilities.

Any parent would likely agree that the role is both challenging and rewarding. But parenting a child with special needs can come with several more hurdles. Often, these challenges are not well understood by other parents.

Rose Reif, a mental health and rehabilitation counsellor, perhaps puts it best when she told Very well, a U.S.-based online magazine, that raising a disabled child can feel like “running a marathon where the finish line is constantly being moved farther away from you.

No one is cheering for you and no one seems to get what’s so hard for you. And so, these parents wind up feeling isolated, exhausted, and overwhelmed just by day-to-day life.”

As someone who works in the disability field, I wear many hats/hijabs: I am a service navigator advocating for children with disabilities during work hours, and a parent of a child with special needs — their personal advocate, educator and their therapist — after work hours. I know firsthand the many barriers that arise for individuals with disabilities at a personal and professional level.

But it’s critical to note that our children are by no means the challenge. The challenge for our families is a lack of awareness, inaccessibility, financial burdens and minimal support from government and community agencies.

The financial burden, and the lack of support and awareness of the immense costs to provide our children with the basic care they need is often misinterpreted and misunderstood. Where people might feel there is more than enough help in school, in health care, and from the government, this is the furthest thing from the truth.

With inflation plaguing every household in the country, families with children and youth with disabilities, who already have minimal support, are further disadvantaged. In Canada, government benefits cover less than six per cent of outof-pocket disability-related expenses families face. Essential services are only minimally covered by OHIP, such as a limited number of rehabilitative therapy sessions, adaptive equipment, assistive technology and respite care services.

To obtain these supports, parents must get higher work insurance or pay out of pocket. As private therapy expenses range anywhere between $130 to $150 per session, and respite care can cost anywhere between $300 to $700 per week, essential services for children and youth with disabilities can easily amount to more than $2,000 a month.

As a result, many parents end up choosing between paying the rent and groceries or forsaking therapy sessions, such as speech and language to help their child learn how to communicate, or postponing the purchase or repair of a wheelchair or other necessary equipment. That means that our children continue to get left behind, end up regressing in skills and suffering a lower quality of life. This leads to a cycle of struggles as a caregiver and as a child with disability.

My son is one of the biggest blessings in my life. He brings so much joy and happiness to our family. However, there is an immense amount of pain that comes with raising him, knowing all the things I cannot provide to him because of the systematic barriers that make it hard for him to live his life positively and wholly.

My husband and I have worked hard from the very beginning of my son’s diagnosis to provide him with the support he needs, but we have fallen short because of the multiple financial burdens we face, and the lack of government and community support that is available for him.

There remain many misconceptions and stereotypes about parents of children with disabilities. Many believe that parents complain too much and assume that we are surely well taken care of by the health care system and through government funding.

I can’t tell you how many people I’ve heard express that we parents are just looking for government handouts and should be grateful for whatever support we are receiving. Many people, however, aren’t aware of the reality that parents of children with disabilities are faced with daily.

Support for our children is needed across the country. Whether it’s an increase in government funding for therapy, equipment and respite care for families that accounts for inflation, streamlined services so families can easily access supports, and/or breaking down hurtful stereotypes so families can easily and respectfully get the accommodations their children require, change is needed.

Believing that parents of children with disabilities only care about government handouts negatively impacts public perception, ultimately leading to policy choices that further strain our ability to care for our children and provide them with a normal quality of life just like everyone else.

We need the government to provide more financial support tailored to the needs of our children so that they can receive adequate and appropriate health care and education. We need the community’s understanding of the support that’s needed to help our children excel and succeed in their lives. Don’t feed into these stereotypes. Hear our stories. Be empathetic. Support us in implementing change so that all children, regardless of ability, can actively participate, engage and learn wherever they go.

INSIGHT

en-ca

2023-01-28T08:00:00.0000000Z

2023-01-28T08:00:00.0000000Z

https://thestarepaper.pressreader.com/article/282372633748639

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