Sharon Liff discusses the challenges she and her husband face caring for their severely disabled son Adam and how a shortage of qualified home care support is making things worse. Now, 19 years old, Adam was diagnosed with Pelizaeus-Merzbacher Disease when he was a toddler and requires 24-hour care.
Sharon Liff discusses the challenges she and her husband face caring for their severely disabled son Adam and how a shortage of qualified home care support is making things worse. Now, 19 years old, Adam was diagnosed with Pelizaeus-Merzbacher Disease when he was a toddler and requires 24-hour care.
OMA Spotlight on Health – Sharon Liff 2
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Georgia Balogiannis: In this podcast the Ontario Medical Association looks at current issues of interest in health care. Spotlight on Health gives you all the straight talk. We're Ontario's doctors and your health matters to us. I'm Georgia Balogiannis
for the Ontario Medical Association.
In this episode, Ottawa mom Sharon Liff opens up about the challenges of raising a profoundly disabled child and her frustrations with the continued underfunding of homecare in Ontario.
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Sharon Liff: Adam was born, I think he was 10 days late, and something wasn't right. They found in the ultrasound — so he had twisted feet, club feet, and then they suspected there's a sacral dimple, which is developed now. They thought he may have even had spina bifida, not realizing there's a lot more underneath.
Over the first three months, we realized he wasn't hitting any milestones. They started noticing developmental delays. I went to a Well Baby Clinic — all the kids were within three months of age. I watched them all develop, and Adam is just lying there in his birthing pillow so I could prop him up. If I left the room, he was smiling. All — most of the other kids got upset; their mother left the room, they cry — Adam is just smiling, look at the ceiling…. And just over time, he wasn't developing. But he wasn't diagnosed until two years.
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Sharon Liff: Adam has around the clock feeds and nursing, or DSWs depending who I can get. And he's fed overnight, he's given meds, gets a feed, by 7:30 is on the bus to go to school, diapered up in the standing frame or standing sling, tummy time, or in his wheelchair doing academics, does the physical stuff —up and down, up and down —diapers, venting, feeds, home, then he does tummy time at home, another feed, diapering, up in his walker, getting ready for bed, last venting for stomach, etc. So, it’s a —there's a lot, and that round-the-clock — and he can't talk. We have overnight staff or we do it.
Everyone needs help who have any needs. For those parents, we're gonna burn out faster because of the higher needs. He's 19; he's considered an adult by legal age, but he's still in the pediatric side ‘cause he's got one year left of school and then he's fully booted out and he becomes a full-fledged adult with nothing, because the day
services have closed. And that's why we need the help, the physical help let alone the emotional help.
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Sharon Liff: Adam went to school, he had nurses there, but the funding started coming through. And then as I had more funding, I had more staff, and I was lucky because I was able at the time to hire staff out of the programs he attended — camps. In the last two, three years before the pandemic, I had trouble getting more staff.
Adam's transitioning to adulthood, Adam's going to be out his high school soon. Wow, there's really no one out there.
So, it was getting bad before the pandemic started, the pandemic just killed it. They're so desperate for overnights in the developmental sector, we're competing —we're all competing for the same resources, which have diminished. And I can't find the staff. They have to have a primary job, they have to work overtime, so during COVID you had people calling in sick more. There's times when we've lost the few people we had because they couldn't come in because of being overworked there.
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Sharon Liff: Adam is a very happy guy. Mom or Dad come in the room, his demeanour changes. You can see he's — he loves his father very much, they're like buddies. I'm over the top because it makes him laugh. He's got a sense of humour, he's very laid back, very happy most of the time. We've given up a lot and we love our son, but his care is so onerous because we do everything for him.
We love him. He's a great kid. He didn't ask for this.
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Sharon Liff: Developmental support specialists, they learn about disabilities, caring, they have one pharmacology course so they learn about meds. I want a DSW; we’re in this field because they cared. They had the right training; they were up to the lifting, the feeds, the G-tube feeds, the developmental aspects, they got that kids could be in wheelchairs, nonverbal. They're the ones that are going to help. They're better educated. PSWs are important, but DSWs — but they have to start pushing the value of the DSWs, especially for kids and adults like Adam because they get the social developmental aspects.
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Sharon Liff: They really have to put the time in and the funding to understand the actual need that goes from our needs, which are probably among the most critical because of Adam being so profoundly disabled — if a parent's asking for help, where's the help? Everyone thinks the other agency will do it. The finger pointing has to stop. And it's killing us. And at least Adam has Mom and Dad right now.
I feel more burned out because we're not a hospital, but a hospital is not a place for them either. Understand that if you want people to stay in their homes longer and be happier with their families, you have to provide the supports.
Adam is so profoundly disabled; I've had to advocate longer in his life. So, I'm trying to work, I'm trying to balance, and I'm trying to fit some advocacy like this in where I can help, and I want to help.
Georgia Balogiannis: This podcast is brought to you by the Ontario Medical Association and is edited and produced by Jodi Crawford Productions. To learn more about the Ontario Medical Association, please visit OMA.org
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