As if living with a spinal cord injury wasn't enough of a challenge, a new organization is calling out the provincial government for making people wait months, even a year, for specialized wheelchairs and other equipment.
Just listen to what Bean Gill has to say. Paralyzed by a virus nearly a decade ago, the Edmonton advocate for people with disabilities is now one of several people speaking out as part of Wheels of Change.
“A lot of this stuff needs to be changed and these are things that can be changed, so why don't we get together and just actually make this happen? Because these have been problems for decades. This isn't something new,” she reasoned.
Wheels of Change is now calling on the Alberta government to do more to improve the quality of life for those with spinal cord injuries by reforming how Alberta Aids to Daily Living (AADL) operates. AADL is the government program that supports those with long-term disabilities by helping them access basic medical equipment and supplies.
Wheels’ mission is not just to push for progress, but to collaborate with the decision-makers and educate the rest of the public.
"Spinal cord injury doesn't have a big limelight on it. We still struggle, and there's still lots of us around. It's not just spinal cord injury, but this affects many people who have any kind of mobility problems," Gill said.
"When you need specialized equipment, the wait times with that, and the ordering process ... that affects everybody. If what we do can help people with spinal cord injuries and other people, then we're going to do it."
The way they do things is archaic, she claimed, offering a personal story about an important piece of necessary equipment. The cushion for her wheelchair kept popping, which she fixed until it was no longer fixable.
She didn't have a backup cushion, which would cost approximately $1,000. When you have a spinal cord injury, your medical bills are quite high, she continued.
She came to AADL in an emergency for the equipment. Without it, she would start to develop pressure sores, which would not only degrade her health and quality of life but would add further expense to the health care system.
In making the arrangements to order the exact same cushion, Gill counted out 23 pages of forms that the AADL representative had to fill out.
"This was a little ridiculous. She said, 'Yeah, I know, but they keep changing the policies and so we keep having to add more paperwork.' This is why it's taking so long. It took me five months to get my emergency cushion."
Catheters need to be covered as well, Gill suggested. Right now, clients only get 70 catheters every two months, which can run out quickly. Alberta is the only province that suggests washing and reusing your catheters, she said, despite the fact that cleaning a catheter increases the risk of a urinary tract infection
St. Albert's Tyler Phinney is the assistant director with Wheels. Six years ago, he went to the hospital with a strange back pain that was so unbearable he couldn't even sleep. He was prescribed pain medication and antibiotics for an infection. In the middle of the night, he tried to get up but fell flat on his face because his legs were asleep, or so he thought. By morning, he was paralyzed "from the nipples down."
The infection had pooled behind his spinal cord and started to fill up, compressing his spinal cord and detaching the nerves, he recalled.
He was sent to the University of Alberta Hospital where he was advised that without an immediate operation, the infection would continue and he would become a quadriplegic.
"We decided to do the surgery, and I ended up dying for four and a half minutes. Came back, and yeah, ever since then, it's been a fight."
Now a T4-T7 incomplete paraplegic, he relies on a power chair for his mobility. He confirms that much needs to be done to improve the bureaucracy at AADL. It's a great program and it has its benefits, he praises, but it's far from perfect.
"It has the funding but the problem is is there are areas that need to be improved. Wait times are mind blowing. Most people that get injured do not have the money saved up. It's a traumatic thing that happens," Phinney said.
"You're at the hospital for eight months and all of a sudden, you're going to be released from the hospital, and they go, 'Well, your chair's not in yet. You're going to have to wait six, seven months for your chair to come in.' You're leaving the hospital with a wheelchair, but it's a rented wheelchair so now you're on the hook for $75 a month, if not more. It's just an extra cost involved and it's not going to be the right chair for you. It's just a chair because you can't get a custom chair until you order those custom chairs that fit your body."
Dr. Adalberto Loyola-Sanchez from the spinal cord injury program at the Glenrose Rehabilitation Hospital said this equipment is "essential" for the people who need it.
"Equipment is essential to decrease the demands of the environment," he said. "We are overwhelming the system because we are putting people in situations to get complications: for example, skin breakdowns, problems with urinary tract infections, problems with social isolation."
Steve Crochetiere, director of Wheels, called the wait times "cruel and inhumane."
“This isn’t about the government spending more money, it’s about updating this inefficient system and administering the program in a more timely and efficient manner.”
In an email response to the Gazette, a spokesperson for Alberta Health confirmed that wait times for some benefits are too long.
"We’re committed to improving access to publicly-funded health services and that includes the equipment and supplies provided by AADL. Minister Shandro has asked Alberta Health for a plan to improve access; it will cost money but these services matter to people just like surgery and other health care, and the Minister is committed to making this program serve people better," stated Zoë Cooper, communications director for the Ministry of Health.
While there have been no recent changes to eligibility or benefits provided by Alberta Aids to Daily Living, the program has made ostomy and catheter products more accessible to clients who have been determined to clinically require more than the standard, Cooper added.
