Respite care cuts will break strained system

When people hear the word “respite,” they often imagine a break — a little time off for parents caring for a child with disabilities.

For single-parent families like mine, respite is not a break.

It is survival.

My son was born with cerebral palsy and severe epilepsy. His seizures began when he was still a baby and escalated to the point where he was having multiple seizures an hour. Over the years he has required intensive care admissions, emergency interventions, and constant monitoring. He is nonverbal, requires a feeding tube for nutrition, and needs assistance with mobility and daily care.

His care is complex and constant.

At the same time, I am also a physician. I work in Manitoba’s health-care system, caring for patients in clinics and emergency rooms. Like many parents of children with disabilities, I have tried to balance two full-time roles: caring for my child and continuing to contribute to the workforce.

Respite care is the only reason that balance has been possible.

That is why the recent news that families across Manitoba may be losing respite hours through Children’s Disability Services (CDS) has sent shockwaves through our community.

Many of us received notice that our respite support may be reduced or eliminated as new contracts take effect on April 1. Including me.

For families already stretched thin, the consequences are immediate.

Without respite support, parents cannot work. The care our children require cannot simply be left with a babysitter. Caregivers must be trained to manage seizures, feeding tubes, medications, and mobility equipment. Even before these cuts, families struggled to find qualified workers willing to take on this level of responsibility.

Now many parents are being forced to pay privately for respite care — often at double the cost — just to keep working. And in fact — that is what the industry standard is. CDS system for compensating respite workers needs complete overhaul.

The rate they give me to compensate my worker is $20.90 an hour, which is the highest amount. Equivalent services through an agency are at least $35 an hour. What’s more, I have to assume all liability and hire a worker. At this rate you can see that even a nanny is paid more. These families including mine need a proper system that protects our kids.

In the current way this program operates, CDS assumes no responsibility and often even if families like mine happen to find a worker, they can’t fill the hours as few people are willing to take a job this complex with very little benefit.

Recently I recently had to hire a private respite service myself simply so I could continue doing my job. The price — $35$ per hour. My son recently started having seizures in his sleep and I am required to work nights in the ER.

Having a certified health-care worker through an agency felt more stable and safe and made me realize what everyone had been missing through the current program.

The stress of this current program is overwhelming. Many families are in panic mode, trying to figure out how they will manage after April 1 if their hours are reduced. Many families have just given up. I often feel this way.

And I am far from alone.

Across Manitoba, there are parents caring for children with complex disabilities who are teachers, nurses, therapists, and physicians. When respite disappears, these parents are pushed out of the workforce. Is that something we want?

At a time when Manitoba is already facing severe health-care staffing shortages, policies that make it harder for healthcare workers to stay employed should raise serious concerns.

But this issue goes beyond economics.

It is about humanity.

Caring for a medically complex child is a full-time responsibility that does not end when the workday is over. Parents manage therapies, medications, hospital visits, equipment, school coordination, and constant monitoring. Many of us operate on little sleep and enormous emotional strain.

I know I have.

Respite is the small but critical support that allows families like mine to keep going.

Ironically, when community supports disappear, the costs do not disappear with them. They simply move elsewhere — to hospitals, emergency services, and long-term institutional care.

In other words, cutting respite care does not save money. It creates a much bigger problem.

Families are not asking for special treatment. We are asking for a system that recognizes the reality of caring for medically complex children and works with families to build sustainable solutions.

Right now, families across Manitoba feel like decisions are being made about our lives without our voices being heard. Often the person deciding the funding has never met the family or even reached out to discuss. Actually I only met “the boss” this year after escalating my case and this is after over 10 years with the CDS program.

This “boss” had never talked to me, but dictates what I get.

We need government leaders to pause, listen, and engage directly with the families who rely on these supports every day.

Because behind every policy decision is a child — and a family — doing everything they can to keep that child safe.

And here, a mother who is trying to work her job on the front line in the ER and urgent care.

Dr. Jennifer Anderson is a Metis physician raised in Manitoba and the mother of a child with complex medical needs.