Group homes for adults with autism unaffordable and inaccessible, parents say
Published Wednesday, June 8, 2016 10:04PM EDT Last Updated Wednesday, June 8, 2016 10:21PM EDT
Raising a child with autism comes with a unique set of challenges, from navigating the school system to accessing specialized therapy, but some low-income Ontario families say the real difficulty begins on their child’s 18th birthday.
Some parents say they are struggling to pay for support workers and housing once their child becomes an adult and several provincial supports they relied on disappear.
Ontario offers about 18,000 spaces in publically funded group homes for adults with developmental disabilities, but more than 6,000 people are currently on waiting lists.
The government also provides financial support for adults with autism, but advocates say it’s hardly enough to cover housing and therapy needs.
When parents are unable to pay the difference, they often face tough decisions. Advocates say some families have dropped their children off at hospitals or declared them homeless to access other funding.
“They are no longer attending school and many of these children are sitting at home with their parents, who now have to give up work to look after them,” said Sharon Gabison, executive member of the Ontario Autism Coalition. “Families don’t really have many places to go to.”
Karen Lundy is one of those parents. Her son Joshua, 19, has been denied services by community agencies that serve people with autism, and Karen has been unable to find support workers for her son.
To make matters worse, Karen and her husband both struggle with their own health issues and say they can no longer meet the needs of their son, who is prone to throw fits and sometimes physically lashes out.
“My husband is a cardiac patient -- he is going to get hurt or I am going to burn out and crash,” she said.
Joshua is eligible for about $35,000 in provincial funding per year through a program called Passport, which also offers day programming and community activities. But those funds hardly reach the amount he would need to afford a private group home in Ontario, which can cost around $90,000 per year.
Lundy says she’s often been given the run-around when she tries to access help through provincial resources.
“I feel angry and frustrated because I can’t get people to help me, and it is not like I lack the education and the verbal skills to tell them what the problem is, but they are not listening. They are not helping,” Lundy said.
Krista Schaefer, a mother from Ottawa, faces similar roadblocks with her 23-year-old son Alex, who has lived an Ottawa-area hospital for the past year after a run-in with police.
Alex has been on a waiting list for a publicly-funded group home since then. But the only private group home that would accept him is unaffordable, his mother says.
"My son says to me often when I leave him, 'Mom, if you can't take me with you, can you just kill me?' How do you think that makes me feel every time I leave?" she said.
"It's painful to know that your child is not in a good environment, and may be there for a very, very long time."
Management at the facility agrees that the small hospital room is hardly the right place for Alex, and staff are unable to meet his unique set of needs.
“We don't want him to be in hospital because he does not belong here. It is not question of medication or diagnosis and acute care. It's mostly about finding the right place for him to be,” said Dr. Martin Campbell, assistant director of in-patients at Hôpital Montfort.
In some cases, parents facing few options have looked to funding loopholes to support their children.
“Some families have had to declare their kids homeless in order to access services,” Gabison said. “Some parents, because they can’t deal with their aggression or their aggressive behaviours, they end up taking them to the hospital, which is one of the worst places.”
In 2014, Queen’s Park pledged to spend $810 million over three years to help children and adults with autism.
In a statement to CTV News, the province said it is “working toward a seamless transition from youth supports to adult support.”
“Approximately 42,000 adults in Ontario are currently receiving ministry-funded developmental services and supports through developmental services agencies, including 18,000 in residential settings,” said Ministry of Community and Social Services spokesperson Kristen Tedesco in an email.
The government also offers monthly income support through the Ontario Disability Support Program, day programming, respite and residential supports and clinical supports, Tedesco said. New residential support for an additional 1,400 adults is in the works for next year, she added.
But advocates say that parents face a litany of problems when they try accessing these funds.
“There is a huge waiting list to be assessed for funding, so you are waiting to be assessed for funding, and once you are deemed eligible to receive funding then you are waiting for the funding,” Gabison said.
Asked about these difficulties, the government spokesperson said that “those with the highest needs receive funding in as little as seven days, with about 75 per cent receiving funding within 6 months.”
“If an individual applies because of urgent circumstances such as the death or ill-health of a caregiver, there are mechanisms in place across the province to help these individuals who may be in immediate need of temporary services or supports. They will be given priority over others who are not at high risk and whose circumstances are less urgent,” Tedesco said.
While her son waits at home, Karen Lundy says she’s been advised to move Joshua into a psychiatric ward or even leave him on the street. It’s an option she refuses.
“I can’t do that. I can’t just dump Joshua some place. I could not live with myself if he got restrained and died or ended up in a psych or beat up in a homeless shelter. So he’s home with us and we are begging for help,” Lundy said.
The problem is hardly new. In 2013, an Ottawa couple unable to care for their adult son dropped him off on the doorstep of the offices of Developmental Services Ontario, the provincial agency that links adults with disabilities to services in the community.
Amanda Telford said her son Phillippe required 24-hour care, which she and her husband couldn’t provide. The case shed light on the plight of thousands of others in Ontario who struggle to provide adequate services for their children.
“It was absolutely gut-wrenching and it was very, very full of tears,” Telford told CTV’s Canada AM at the time. “But we decided unanimously that we can no longer keep Philippe safe.”
Statement from Ontario’s Ministry of Community and Social Services:
"The Ministry of Community and Social Services has great respect for families who care for their adult children, and we recognize the strain that can come with providing support. We are committed to helping these families.
Our government is investing $810M over three years to strengthen community and developmental services. Through this new investment, we have taken 14,000 people off the developmental service waiting list in the last two years. More than 25,000 adults are currently receiving respite support directly or funding, including passport funding, that would allow families to purchase respite care.
We are working toward a seamless transition from youth supports to adult support through multi-ministry planning with the Ministries of Children and Youth Services and Education. The government is launching a coordinated service planning initiative that brings together service providers to address the different complex needs of youth with developmental disabilities. In order to ensure this coordinated approach follows them to adulthood, the Ministry of Children and Youth Services, the Ministry of Community and Social Services, and the Ministry of Education are working collaboratively towards integrated transition planning for young people with developmental disabilities as they prepare for adulthood. For example, a memorandum of understanding with all school Boards in Ontario requires the creation of a transition plan for all youth with developmental disabilities, which will assist them and their families in understanding and accessing adult supports and services."
With a report from CTV medical specialist Avis Favaro and producer Elizabeth St. Philip