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Parent despair is like a breaking dam: A BLOOM perspective

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  • Parent despair is like a breaking dam: A BLOOM perspective

    Hi everyone,

    This week there were a lot of news stories about a mom who dropped her adult son with severe autism off at a government office.
    She couldn't provide 24/7 care for him and the family could no longer keep him safe.
    Her son has severe autism, is non-verbal, and in one news report has Tourette Syndrome.

    Bloom is an e-magazine produced by the Holland Bloorview Kids Rehab in Toronto.
    My friend, Louise Kinross, is the editor.
    Here is Bloom's take on this issue and the state of services that help parents in Ontario.

    Parent despair is like a breaking dam: André Marin
    Bloom, THURSDAY, MAY 2, 2013

    Former Canadian Olympian Silken Laumann spoke movingly last night about stepparenting her daughter Kilee, 17, who has severe autism, at a BLOOM speaker event.

    Silken was candid about the challenges the family has faced managing Kilee's meltdowns, which can cause her to lash out at others. She talked about losing caregivers who were injured by Kilee and said the family is fortunate to be able to afford both a worker for Kilee, and a person who acts as a bodyguard for the worker.

    She questioned how parents who don't have this kind of support survive.

    An investigation by the Ontario Ombudsman into over 700 complaints from parents of adult children with developmental disabilities who've been brought to their knees providing round-the-clock care to their kids suggests they don't.

    This morning on CBC radio Ombudsman André Marin compared the situation of parents caring for adult children without adequate support to a breaking dam "holding back a rush of water. It can't hold the water."

    He referred to a staggering number of parents in despair.

    One of these is Amanda Telford, an Ottawa mother and social worker who dropped her 19-year-old son Phillip with severe autism off at a government office two days ago because she and her husband couldn't keep him safe.

    "My husband and I are absolutely exhausted and medically unwell," she said, noting that her son functioned at an 18-month-old level, wandered away from the house and required 24-hour supervision. "I am not able to do this anymore."

    Ombudsman Marin shared stories of parents who couldn't manage their adult children's complex needs, which sometimes included violent outbursts, on a 24-7 basis. He mentioned a mother who had locked herself in the basement and called 911 because her son was violent. She was told to call the police and he would be taken to jail, or to take him to the hospital. There were no long-term solutions offered.

    Marin said many adults with developmental disabilities are living in nursing homes, psychiatric facililties and jail because there aren't appropriate living options for them in the community.

    This afternoon Ontario's Liberal government tables its first budget under the leadership of Kathleen Wynne.

    Of interest will be whether the Ontario Disability Support Program(ODSP)funding has been cut, based on recommendations from a commission tasked with overhauling social assistance.

    According to this article by Carol Goar in the Toronto Star, "Under the new system, there would be no distinction between disability support recipients and general welfare recipients. Under the current system, an individual receiving disability support gets $1,075 a month; an individual on general welfare gets $606 a month."

    I was astounded that the Toronto Star was our only major newspaper covering this proposed change.

    The ODSP is for people with severe physical or mental disabilities who are unable to work and require daily care. It's for families like the Telfords.

    I messaged Carol Goar this morning to ask whether she thought the government would move on this cut. "I believe the premier has realized there’s too much opposition to any change in ODSP benefits to proceed," Goar said. "But it would be best to wait six hours and see what the Liberals actually do."

    Doesn't your head spin sometimes, seeing the connections between these stories?

    Over 700 families are part of the Ombudsman's investigation and Marin suggests that's just the tip of the iceberg.

    So how does it compute that we need to reduce funding support to families like these?

    ---------- Post Merged at 11:36 PM ---------- Previous Post was at 11:33 PM ----------

    More from Louise:

    "With some important exceptions, the focus of research and government attention is on isolating the factors that might cause autism, rather than on devising models of care for the diverse and changing needs of people who are on the autism spectrum."

    Great article about how little attention is paid to making the lives of adults with autism better.

    Much study, little understanding about autism
    By Michael Orsini, Ottawa Citizen May 2, 2013

    The Ottawa case that made headlines this week is familiar to many parents with autistic children. Frustrated with the lack of government support and exhausted from round-the-clock care of her 19-year-old son, Philippe, Amanda Telford dropped him off at the office of an agency that deals with people with developmental disabilities. The move was, obviously, a desperate effort to communicate the urgency of the issues faced by parents like her on a daily basis.

    What would propel a mother to take the unusual step of dropping off her 19-year-old son? This recent case reveals the widening cracks in our systems of care and support for individuals living with disabilities. When governments cut back funding or services to deal with elderly parents or disabled children, they are presuming that families (namely women in those families) will pick up the slack, as they are often forced to do. And it is important to underline that the burden of care for disabled children or adults falls disproportionately on the shoulders of women. While there have been important efforts to de-institutionalize care to communities and households, this has not been accompanied by the necessary support for those families who are now charged with this care. As political scientist Kristin Bumiller has argued in the U.S. context, the focus on the family as the locus of care conveniently deflects our attention from the role of public institutions in providing support for and promoting the welfare of its citizens.

    Amanda Telford should be thanked for shining a necessary light on a problem that is, unfortunately, not new. Autism is certainly in the public eye, and commands attention from researchers eager to unlock the “mysteries” of this condition. But beyond the numbing statistics about the condition, which communicate the idea of an unstoppable epidemic, we know less about what life is like on the autism spectrum, and of the challenges of individuals who navigate the complex maze of services available for children and adults, and their loved ones.

    There is no shortage of talk about autism, but surprisingly little discussion about the needs of autistic adults. The needs of adults seem to have fallen off the radar completely. News flash: autistic children develop into autistic adults.

    And they need a continuum of support that might range from respite care for parents or loved ones to assisted living arrangements or, in some cases, institutional care. With some important exceptions, the focus of research and government attention is on isolating the factors that might cause autism, rather than on devising models of care for the diverse and changing needs of people who are on the autism spectrum.

    Of course, the needs of adults on the spectrum are as varied as the condition itself. For instance, non-verbal autistic people who live with other conditions, as does the person at the centre of this recent case in Ottawa, have needs that differ from others who can function, communicate and interact in social environments. There is, of course, no “one size fits all” when dealing with autism. As many in the autism community often say, “If you’ve met one person with autism, you’ve met one person with autism.” It is dangerous to generalize about a condition on the basis of one encounter with an autistic person.

    Author and animal scientist Temple Grandin, perhaps the world’s most famous autistic person, has written about how she understands the world by “thinking in pictures.” She credits her autism and her love of animals with her ability to devise a humane technique for slaughtering cattle that is used throughout the world.

    What is common, however, is that how we understand autism has important implications for how we hold governments to account for addressing and promoting the welfare of citizens who have varying levels of ability. When we cut social programs and supports for people on the autism spectrum, we invariably privatize those responsibilities onto the back of families and caregivers, many of whom are struggling to deal with the regular stress associated with family life. Autistic self-advocates, who rightly decry the focus on autism as “a fate worse than cancer,” worry that a singular focus on “treating” autism or screening autism out of existence communicates the idea that autistic lives are lives not worth living.

    A more sensible and humane approach, they argue, would be to meet people where they are. Some autistic people require support dealing with the challenges associated with social interaction, and require forms of care and support that other members of minority communities might require. They need to be accommodated, not fixed.

    Michael Orsini is associate professor in the School of Political Studies, and director of the Institute of Women’s Studies at the University of Ottawa. He is the co-editor with Joyce Davidson of Worlds of Autism: Across the Spectrum of Neurological Difference, which is forthcoming from the University of Minnesota Press.

    ---------- Post Merged at 11:52 PM ---------- Previous Post was at 11:36 PM ----------

    One more article, from CBC's website:

    Parents of autistic children battle bureaucracy of health system
    One mother spent $80,000 to build business to help others navigate the system
    By Andre Mayer, CBC News Posted: May 3, 2013 4:38 PM ET Last Updated: May 3, 2013 4:51 PM ET

    An Ottawa mother’s decision to leave her severely autistic son in the hands of a provincial services office has not only highlighted the difficulties of raising a disabled child, but also a growing frustration among parents with the governmental support system.

    Amanda Telford said it was the personal exhaustion that resulted from a lack of government help that compelled her to leave her 19-year-old son, Philipp, at the office on Tuesday.

    “My heart goes out to this woman,” says St. Catharines, Ont., native Karen Maziar, whose son Gerard DeRoche is autistic. “I’ve been there.”

    Maziar found the system of government support so daunting that she sank $80,000 of her own money into building a business intended to help the caregivers of disabled individuals navigate the health-care system.

    At age nine, Gerard developed compartment syndrome, a medical condition in which pressure builds up in certain muscles, leading to swelling that can cause muscle and nerve damage. He ended up losing the muscle in the lower part of his left leg and needed a leg brace just to be able to walk.

    After being previously misdiagnosed with attention deficit disorder, Gerard was eventually diagnosed with autism and an intellectual disability when he was 14.

    For many of these years, Maziar was raising Gerard and his younger brother, Robert, as a single parent while also running her marketing firm. She cashed in $6,000 of her RRSPs to purchase things such as leg braces for Gerard, which at the time cost about $1,400 each.

    “Through all this time, I didn’t know about the Ontario disability program for children, I didn’t know about the assistive devices program for children – anything like that,” says Maziar.

    It was only by overhearing a conversation while standing in a line at the bank one day that Maziar learned about some of the government support available to her.

    She went home and researched the subject and in 2004 developed a website called Disability Advocate Gerard to provide an online resource guide of government services available to people with loved ones who have a mental or physical disability.

    “Where do you go for help? Who do you go to? It shouldn’t be that hard” to find resources, Maziar says.

    To read more ...
    Tina, Forum Moderator, TSFC Staff Liaison

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  • #2
    Re: Parent despair is like a breaking dam: A BLOOM perspective

    There is an update on this story.
    The family has found a temporary home for their son, for a few weeks.

    Ottawa teen with autism finds place to stay
    Philipp Telford to live in group home after parents declare they can no longer care for him
    CBC News Posted: May 3, 2013 1:38 PM ET Last Updated: May 3, 2013 3:02 PM ET

    A teenager with autism whose parents said they couldn’t care for him anymore has found a semi-permanent place to stay.
    Amanda Telford left her 19-year-old son Philipp at a provincial Developmental Services Ontario office on Tuesday, saying his family was exhausted and couldn’t keep him safe.
    Philipp has a severe form of autism that leaves him unable to speak. He functions at the level of a two-year-old and has Tourette’s syndrome and insulin-dependent diabetes.
    His mother said Thursday the agency has found temporary space for him at an Ottawa group home.

    To read more
    Tina, Forum Moderator, TSFC Staff Liaison

    TSFC Homepage
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