Families decry lack of help for adults with intellectual disabilities in Sask.

Tara Jo Kadlec said her brother deserved to be treated better by the provincial system in the last years of his life.

Her brother Cory had Down syndrome. He passed away last month at the age of 41.

“He was very kind, loving, and really, really funny. He made an impact on anyone who ever saw him enter a room, whether it was for 10 seconds or 10 minutes,” Kadlec said.

As Cory got older, Kadlec said he gained more medical problems, including diabetes, celiac disease and a thyroid issue. He suffered a stroke three years ago, and later had a seizure.

Kadlec said there wasn’t enough help available for him.

Cory had been in a group home, but after the seizure she said no home would take him, and her family knew the restrictions that would be placed on him in a long-term care ward meant that option wasn’t right for him. So Kadlec and her sister, who both live outside of Saskatchewan, took turns coming back to the province to take care of him.

“My sister and I haven’t worked in over two years because it took that much time to plan self-directed funding without any help from CLSD (Community Living Service Delivery),” said Kadlec.

She said everything was harder than it should have been.

“We were already in crisis just in terms of Corey’s health care, let alone what we had to (deal with) to get the three types of funding that we were eligible for,” said Kadlec.

She described problems with getting the individualized funding for his care on time, and with the medical system not knowing how to care for her brother. At the end of his life, she said he wasn’t even given the proper pain medication.

“And my brother – who was the best person in the world, and anybody that met him would have said that to you – did not deserve that, nor does any other family member ever deserve that at their end of life,” Kadlec said.

She said she wished she hadn’t had to fight so hard and do all that work, and instead had been able to enjoy the last year of Cory’s life as his sister.

Kadlec and her sister were just one of several families brought to the Legislative Building by the Saskatchewan NDP on Monday to speak about this issue.

Tracie Bellisle was also present along with her son Brandon, who has a number of complex needs including cerebral palsy and a seizure disorder.

Bellisle explained that after 12 years on a waiting list to get into a group home, she had to pull Brandon out of the home he did get into after 16 days because he wasn’t safe. She described seeing a worker screaming at a patient and a series of issues with his medication.

“After 14 days they realized that they had a medication with somebody else’s name on it that they were dispensing, and they’d had that med for 14 days,” said Bellisle.

She said there was no organization in the home and no accountability for the errors.

Shannon Gardiner brought a stack of papers and assessments about Matthew Brandon, whose care she and her husband are charged with.

She described having an in-depth psychological assessment completed which showed he needs the highest level of care, but said provincial funding falls short because he’s assessed differently on the provincial government’s checklist.

“We’re tried so many different ways, we’ve left no stone unturned and we will continue, 27 years later, to keep fighting,” said Gardiner.

Meara Conway, the NDP’s social services critic, said there is a system-wide failure in Saskatchewan when it comes to helping adults living with developmental disabilities.

Conway said there’s a lack of group homes available and many have long waiting lists partly because of a crisis among workers in the sector stemming from low wages, lack of benefits and high turnover.

“It’s the people living with disabilities that end up getting the raw end of that deal,” said Conway.

She said there’s a lack of co-ordination between the ministries of health and social services, creating confusion and care gaps, and said the outdated assessment tools are creating a gap of support for those who care for family members.

Conway said there are many issues across the board, and the families who joined her on Monday represent just a drop in the bucket.

“A lot of individuals in this situation don’t have loud family members advocating for them,” said Conway.

“A lot of the families that have come to me don’t want to come to the legislature, and certainly these families feel like it’s a last resort. They don’t want to be here. They don’t want to fight so hard every single day just to get basic supports.”

The families together, were calling for more housing and care options, more funding for individualized care, and for better understanding on the part of those making the decisions.

“They just failed him – physically failed him a lot, again and again and again,” said Kadlec.

Kadlec added that she’d like to sit down with Gene Makowsky, Saskatchewan’s minister of social services, to give him a reality check about what it’s really like.

When Makowsky was asked about the families’ concerns, he said he understands the challenges and frustrations they are dealing with.

“I think the ministry (of social services) as well as the Ministry of Health is working towards some of these more complicated medical needs cases, providing support, and that work continues,” said Makowsky.

He said more money had been added in to the ministry’s budget to help with these issues in the spring, and that it’s working on building more group homes. Additionally, he said an operational oversight unit will be created in the coming months to oversee group homes.

“That’s something that we have on the child and family side (which) has been expanded to the CLSD side to help group homes and inspect and oversee the governance side of things, but also the operational side of things,” said the minister.

Makowsky said there’s more to do, adding that he’d like to move quicker in building new homes and other improvements, but it’s a complex system and changes take time.