When Heather McPherson’s daughter passed away 18 months ago, she took on the care of her grandson, Brent.
Brent, 20, has Fetal Alcohol Syndrome. He can’t be left alone for long because he struggles with simple tasks and doesn’t always understand the consequences of his actions.
Up until last year, Brent went to a day program in Abbotsford five days a week.
There, he socialized with others and was learning to do more things on his own. He couldn’t wait to go every day.
Things are different now. Brent turned 19 and was no longer eligible for that program, funded by the Ministry of Education.
Now, his funding comes through Community Living BC (CLBC), a provincial crown agency which is supported by the Ministry of Social Development.
He attends a program just two days a week, leaving Heather, 69, struggling with how to help him fill in the rest of the time.
She doesn’t have the expertise to assist Brent with his specific issues.
“He gets frustrated because he has nothing to do. I have things I want to do, but he wants to be with me all the time,” Heather said. “It’s not something I want to do for the rest of my life.”
It’s a scenario being repeated across the province, in family after family struggling to care for adult children with developmental disabilities, said Faith Bodnar, executive director of the B.C. Association for Community Living (BCACL), an advocacy group.
She said individuals turning 19 are often declined funding unless, for example, they are coming out of foster care or there are health issues with their caregiver.
Many parents have had to quit their jobs in order to stay home with their adult child who cannot be left on his or her own, she said.
Wait lists for respite, day programs and independent supported living are lengthy, often years.
“It’s not right that families should be put in those circumstances,” she said. “From the human costs, it’s huge. It’s not dignified or respectful to treat people this way.”
Arlene Schouten with the MSA Society for Community Living in Abbotsford said there are 1,700 individuals across B.C. currently on wait lists. (Figures for Abbotsford are not available.)
While funding has been frozen, demand for services will be up 59 per cent by 2013, she said.
“They (the government) have been whittling away since 2003 and now there’s nothing left ... People are really at risk. It’s only a matter of time before something bad is going to happen,” she said.
Schouten said one group home in Abbotsford is being forced to close its doors. It was funded for four beds, but when two of the residents passed away, the money was reduced.
The two remaining residents have been recommended for “home share” – like an adult foster home – but they have medical needs that are not suitable for such a living situation.
“This is a lawsuit waiting to happen.”
Another Abbotsford family worried about the community living funding issues are the Doerksens. Parents Joyce and Brian have six children, three of whom have Fragile X syndrome, a mental disability.
Of the three, their oldest is Ben, who turned 19 last September. He needs help in every area, including toileting and meals.
Before his birthday, the family received 28 days of respite per year and $500 a month for therapists through autism funding.
He now receives an assistance cheque of just over $900 a month, $375 of which is designated for housing costs, while the rest covers other living expenses, but no programming.
The couple’s biggest concern is that Ben graduated from school this year, and no services are available to help fill in the time in his day.
“In essence, by reducing funding ... with no plan in place, our government has taken away our sons’ and daughters’ ability to access the community and be integrated in it, and has relegated them to their bedrooms, which I believe is where most special needs kids spend their free time,” Joyce said.
An interview was requested with Minister of Social Development Harry Bloy, but the Abbotsford News was told he was not available.
Kate Chandler, external relations advisor with CLBC, said the agency is doing what it can, last year providing additional support to 1,000 individuals and families.
However, she said the CLBC caseload grew by 766 this year, representing a six per cent increase over 2010 and a 35 per cent increase over the last five years.
“We recognize there are some challenges with the increased demand for service. However, we are increasing the number of people we support each year,” she said.
She said the province has invested more than $3.5 billion into CLBC since 2005.
COMMUNITY LIVING FUNDING
• In 2003, the provincial government cut its budget for community living services by $77.5 million.
• In 2009, the province invested $73 million in supports and services for adults with development disabilities, but this only temporarily eased the burden of wait lists, according to the B.C. Association for Community Living (BCACL), an advocacy group for families and individuals.
• The BCACL says that Community Living BC (CLBC), the provincial crown agency that provides support and services, faced a $22 million budget shortfall last year, forcing it to close 33 group homes. Respite, day programs and other services were also cut.
• Two public meetings were held last fall – one in Vancouver and the other in Victoria – to address the issues, which the BC Community Living Action Group, consisting of the BCACL and other agencies, called a “crisis.”
• A list of recommendations emerged from those meetings, including that funding be increased, group homes be protected, and consultation and collaboration with families and individuals be improved.
• The CLBC says the province has increased operations funding every year since its creation in 2005.