A Red Deer mother with two adult sons with developmental disabilities says she went without respite care for most of 2015 despite a government service contract with a community agency.
Lily Breland, 66, said regular respite care ended last January even though 15 hours a week of respite care in her home is included in the service contract between Lacombe Action Group and the provincial government department Persons with Development Disabilities (PDD).
For more than 10 years, a respite worker has regularly cared for her sons so she could have a few hours a week all to herself.
She said the community agency did provide a respite worker in the summer, but only for about five weeks.
Breland said she was told regular staffing was unavailable for a variety of reasons.
“I’m kind of at my wits end trying to figure out what to do. I don’t have the money to sue a government agency and that’s kind of where I feel I’m at now. All I want is my 15 hours a week. I need a break,” Breland said.
Her sons Ryan Breland, 42, and Daniel, 36, both have severe mental disabilities and autism, and respite care gives Breland dedicated time off.
“I’m sure they do not look at this as a really imperative position to cover (but) it means I’m on call 24 hours.”
Action Group staff do take her sons out to community activities and venues seven hours each day, Monday to Friday. Breland said she is always on call regardless of whether her sons have community staff, and when those staff are sick or on vacation, she fills in.
She said the agency told her to file an appeal with PDD, and PDD agreed she was owed many hours of respite care which sounds great, except she still can’t get any respite.
“PDD has told me I can change agencies. I have phoned other agencies. And all the agencies have a problem with getting and retaining respite staff. So me changing agencies isn’t going to make any difference, near as I can see.”
Breland wondered how many other families were without respite care.
Last spring she went ahead and paid for six weeks of respite care. She said neither the agency or PDD would reimburse her the cost of care, that amounted to $1,500, because the agency didn’t provide the service so it wasn’t PDD-funded.
“It’s all caught up in policy. The agency is following all its policies. PDD is following all their policies. This is a service contract signed between PDD and the agency and if it is a contract then why is this not a breach of contract.”
Breland said she has contacted the Alberta Ombudsman who has agreed to investigate.
Lacombe Action Group could not comment on their service to a specific family.
Debbie Martin, executive director of Lacombe Action Group, said for years it’s been a struggle to find caregivers in general. Workers must also be matched with the specific needs of families.
“There’s challenges with all positions. Sometimes it depends on the types of hours you’re looking at, the types of qualifications you’re looking at. Each situation is unique, although there are challenges throughout,” Martin said.
“Even with the economy we’re not seeing larger numbers coming forward. The types of workers out there aren’t necessarily the types of workers coming into our field.”
She said recruiting workers for children is particularly difficult because workers are usually required only for a few hours before and after school.
Martin said families will often go without services if staff aren’t available, or they may recruit workers on their own. Reimbursement depends on a family’s PDD contract.
Breland said families can choose to manage PDD-funded services entirely on their own. But families must screen, hire and arrange pay, and do all the bookkeeping and accounting that an agency would normally do.
“I’m 66 years old. I don’t feel like doing that. I want somebody else to do it,” Breland said.
Aaron Manton, Ministry of Human Services press secretary, said in an e-mail that the province is committed to stable funding to support Albertans with disabilities.
“We are aware of the challenges that agencies face in attracting staff into these important and complex positions, and are examining ways to attract and retain qualified staff to ensure Albertans receive the support they need in a timely manner,” Manton said.
According to information on accessing PDD services, the wait to receive services varies because of differing circumstances. Those include the availability of programs or services in the area, service provider programs are full or need to hire staff, preferring to wait with no services until a preferred service provider is available, time taken by the person or guardian to explore service options, and more.
Individuals with complex health and safety needs that cannot be addressed through other resources are prioritized for access to services.