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View Point: Laurie Larson, President of CACL, speaks out about the recent CBC TV news coverage

Laurie Larson, President of CACL 2012 

Laurie Larson, President of CACL, speaks out about the recent CBC TV news coverage on the crisis situation that exists for families supporting their adult sons and daughters with intellectual disabilities.

 

Laurie is a mother of two young men with disabilities, both in their 20s, who live and are cared for in their family home. 

The past two evenings CBC’s the National has featured stories by Ioanna Roumeliotis regarding the situation that aging families face in caring for their adult sons and daughters with intellectual disabilities. The first segment can be found here, and the second here.

These stories focused on two families but are representative of the situations that thousands of families find themselves in across the country. These stories are neither new nor are they to be found only in Ontario. There is a growing crisis nation-wide as governments fail to step up and provide adequate, appropriate and individualized options for adults with intellectual disabilities.  With our aging population this situation is going to get worse before it gets better.

As families, we are victims of what seems a collective strategy of denial.  The current situation families find themselves facing and the decisions that they are being forced to make will not come as a surprise to those in government.  For many years parents, and the organizations who advocate on behalf of individuals with intellectual disabilities and their families, have been speaking to governments about this.  Governments have failed to adequately respond to this crisis and have placed the responsibility of caring for adults with intellectual disabilities squarely on the shoulders of the families to an extent far beyond what can reasonably be expected.  We need to strike a new social contract with families; lives hang in the balance.  Effectively, the love that families feel for their sons and daughters is being exploited.  To cut expenditures, governments rely on us to continue to provide support as long as we possibly can. Supports and services are chronically underfunded, and what funding is provided often goes into an outdated model of support   Governments, communities and society as a whole, have failed, for the most part, to embrace innovation and current knowledge of how best to enable individuals to live inclusive lives with real options and choices.

This strategy of denial has not worked for the families and most certainly has not worked for individuals with intellectual disabilities.

There are many, many examples across this country of individuals with intellectual disabilities, including those with significant disabilities, leading good, successful and inclusive lives.   They are supported to live in homes of their own, they have real jobs for real pay, they are active and involved and contribute to their communities.  They have relationships and friendships and many fall in love and get married. A good life is indeed possible!!  The reality is that these examples are all too rare.   To ensure that more people experience this level of success and inclusion and are able to live their own lives outside of their family homes requires a commitment on the part of government to do things differently – to fund differently.  It also requires a commitment on the part of our communities to remove the artificial barriers that have been created, to find ways to support and welcome the full diversity that exists within our society.  And it requires a commitment from service providers to think outside the box and to not only provide, but also advocate for, innovative and individualized supports to persons with intellectual disabilities.  There is certainly enough work to go around to right the current situation.

Right now in Canada more than 80% of adults with disabilities who require supports have it provided by family members.*

Families across the country are in crisis.  Their sons and daughters are being denied the opportunities and supports to live and flourish in their communities.  Our country is aging and with that demographic shift there will also be an increase in needs to be met and not only for those with intellectual disabilities.  We are also in a time of austerity measures.  Individuals with intellectual disabilities and their families have always been vulnerable.  They are even more so now.

The time has come, in fact is long overdue, to deal with the realities that individuals with intellectual disabilities and their families face.  Canada has recently ratified the UN Convention on the Rights of Persons with Disabilities.  It is time our country lived up to its commitment to them.

It is good that this issue is being brought to the attention of the Canadian public.  It is unfortunate though that it takes presenting stories in this light, stories that focus so heavily on the negative, to get people’s attention.  There is a real danger in how these stories are presented if people assume that this is the necessary or only outcome.  Often times the outrage that is generated by such stories lead to very inappropriate responses to the problem.  We must always be extremely careful in our advocacy that we treat those with intellectual disabilities with dignity and respect.

I would invite families to share your story.  What are the challenges you face?  What success have your sons and daughters achieved?  What innovative solutions have you been able to create?  Log in below and leave comments or tell your story.  People are listening.

* 84% of adults with intellectual disabilities receive help with everyday activities such as meal preparation, running errands, personal finances, housework, personal care and so on. Among people with any disability who receive help with such activities, family members are the providers of help in 83% of cases.
 
Sources: Statistics Canada. (2010). Participation and Activity Limitation Survey 2006: Tables (Part VI). Ottawa: Minister of Industry; Unpublished data from the Institute for Research and Development on Inclusion and Society – IRIS.
 
For more information on Supports to Families please see CACL’s 2010 National Report Card on Inclusion.


Comments

follow up stories

Here are a couple of links to stories that may be of interest.

This is about the young woman featured in segment 2 of the CBC coverage.

http://www.theobserver.ca/2012/11/29/funding-found-for-emilia

The CBC coverage focussed on the situation in ON, but this story talks about the situation that exists in Nova Scotia.

http://halifax.mediacoop.ca/story/nova-scotias-most-vulnerable-populatio...

Forever Child's Mother Comments

Your November 24th response to Bonnie is right on Pat (Hanbury)! As mother of the “forever child” (my term not CBC’s), I too “find it frustrating that so many people who talk about the great fully included lives possible for people with developmental disabilities share very few details about the semantics that make these arrangements possible.” Like you, after attending a seminar in London, Ontario in 2009 hosted by the Ministry of Community and Social Services called “A Home That Right for Me – Valuing Choice, Evolving Individualized Residential Options”, I too was inspired to devise a residential plan for our son Ryan. The effort involved in attempting to set this up also occupied my life for the better part of a year. I worked hard creating and promoting relationships between Ryan and potential roommates and then attempted to “sell” the plan to their parents. As well, I approached all the developmental sector agencies in our area (including two Community Livings) imploring them to share our plan generously with any interested parties whether they were parents of clients that could become potential roommates, potential caregivers or just anyone who could offer input into our endeavor. The response I received from both parents and agencies was basically zero. You are right Pat – a lot of “lofty ideals” and a “great deal of rhetoric” but “zero time (spent) designing the support systems to make this vision a reality”! Why? As Laurie says “governments fail to step up and provide adequate, appropriate and individualized options for adults with intellectual disabilities”.
So, to those of you who took issue with CBC’s “de-humanizing” of our son (“the man who had no friends, no life he seemed to be ordered about and not wanted”), or who “wept for Ryan whose birthright to respect and dignity was displaced by the need to sensationalize”, perhaps your outrage would be better directed towards a government that has refused to step up to the plate for our most vulnerable. For THIS is where I believe we need to focus our energy and outrage. We need to educate society to the message that “we are only as strong as our weakest link”! It has been said that a measure of society can be taken in how it’s most vulnerable members are treated. If it took our story to encourage the public to reach out and express their outrage at the situations families find themselves facing, it was worth putting our family out there. Let’s hope that they let our governing members know that as a society we need to decide what we value, prioritize it and make it happen. IT’S PAST TIME!

I would also like to thank CBC The National’s Ioanna Roumeliotis and videographer Ousama Farag, who arrived at our house at 6:30 am in order to catch Ryan starting his day, and did not leave until 10pm. What they captured during hours of filming, condensed into eight minutes on the screen, was not an attempt “to portray people with intellectual disabilities in the worst possible light.” What they caught in those few minutes was the truth – and that truth is our life with a forever child.

Lastly, for anyone interested, I have retrieved Ryan’s plan from the shelf and dusted it off to share with you. Email me at denisejhastings@hotmail.com if you would like me to forward it. I also want to share a website I came across while researching for it. http://www.lights.to/ Sadly this wonderful organization is only available to those in the Toronto area but it SHOULD be implemented throughout the province and available to ALL of us seeking better options for our loved ones. So Ministry of Social Services? ARE YOU LISTENING!!

CBC National report Forever Child

Hi Pat (Hanbury): In response to my lack of understanding of supports needed, let me give you a little background of my situation. My daughter was born full term, weighing 7.3 lbs. She was diagnosised with a rare form of down syndrome (translocation 21) and had a massive hole in her heart that affected 3 chambers of her heart and split the mitral value into a mess. It took 11 months of extensive feeding and muscle build up therapies to get her to 10 lbs so that she could have an operation to save her life. We lived at Sick Kids, I had another child at the time and he was dragged to many many appointments. She had open heart surgery where her chest was cut open her ribs pulled apart, her body temperature was cooled to slow everything down and sewed back together. When she came out of surgery she had 150 tubes, electrodes and various monitors to check on every aspect of her body functions. At points of the monitoring prior to the operation we had to fight with doctors to advocate for her right to the operation. It took many months with adaptive equipment and training to get her to a point where she could even sit up. She didn't walk until she was 4 years old because she still had a hard time gaining muscle and weight to hold her poor little body up.
Fotunately, I am not the brightest bulb on the planet, and just signed up Jenny for things in the community they way I did for my other 3 kids. I was her support person, as we didn't have money to pay for that. She went to the neighbourhood Separate school as her bother and sister. She shared an EA and had to learn how to fend for herself in the school yard. It was not easy for any of us and many times had to get the school to intervein on my other childrens behalf and they were being teased for having a "R" sister.
Jenny has had to work 100 times as hard as others to learn how to walk and not trip, she has spacial issues, how to dress herself, toileting issues, she is very hard of hearing and wears hearing aides, (which have their own set of problems as she had to learn how to put them in and take them out, just to wear them was a struggle at times)of course with a hearing issue she has speech issues - we did tons of speech therapy, luckily some of it was covered by private insurance.She is still very hard to understand and it is a cause of much frustration for her.
When the children where quite young my husband and I split up. So I too work full time and volunteer extensively with Community Living on the parent council.
6 years ago, a group of parents had decided we didn't want group home living for our children (which is good because the list for housing is beyond waiting for)so we got together and formed a business called Scarborough Residential Alternatives and started learning about what could be done, what was allowed by the government so that they wouldn't get cut off from one time of funding or another. After 2 years we decided they there never would be any guarantee of funding or government support,so we were going to rent a townhouse, find a third person to help share the cost and put it together and are still learning and advocating and going with staff changes, roommate changes, sometimes only 2 individuals were only sharing the costs. We feel the risk is worth it, it WILL work because the alternative is not what I want or my daughter wants.
If you want to send me your email, I will add you to our group, I email extensiviely about anything that is going on in this area and how to advocate. Its hard to explain what we have learned in 6 years and every situation will be different and every individual and their families will be different. (go to www.sralternatives.weebly.com and go to contact us)
But please don't tell me I don't understand the heart ache and frustion of advocating for the rights my child and the hard work it takes to get where we are. She needs support to have the great life she has, that's a given, and it is a constant worry and fight to try and secure any kind of funding with no guarantee that it will remain there. But to me the alternative is not acceptable.

Hi Bonnie: Thank-you for the

Hi Bonnie:
Thank-you for the invitation to contact your group to see how you put his together with regard to the staffing; I will definitely take you up on your offer.

I do have a business number set up in order to hire staff required for our son's day support which I have been doing for some time now, but the struggle is to figure out how to hire people for a live in support model if he were to live in his own home (outside of the home share contractor model that CLBC funds).

Two people living in and each working certain shifts at an hourly rate with each providing some unpaid support like overnight and daytime on call in exchange for free rent would work but unfortunately the funding doesn't stretch enough to even cover this bare bones model and that is with me doing all of the administration duties; even with two families pooling. More than two young people being supported, in our situation, would be an impossible load on a support person.

I assumed when you said your daughter and her friends just needed a bit of supervision making their own dinner and doing their laundry that they their support requirements were very different then those portrayed in the CBC stories. I do find it frustrating when people who don't quite get what it's like to have a child with significant support needs are the main voice at the table in service redesign discussions. Clearly this is not the case with your own family. Families need to stick together and support one another. I'm sure I will gain valuable insights talking to your group as it has always been other families who I have learned the most from.

Thanks for taking the time to write back to me.

CBC coverage

I find the comments above peculiarly self-centered and insensitive — and unnecessarily critical of the CBC reporting. There is no way a reporter can cover ALL disabled people in a couple of reports, and this one focused on the extreme situation of not just the people whose stories we followed, but countless others in a similar predicament: extremely disabled children growing up to be disabled adults needing total care which our society does not provide in a humane and accessible manner. It is great to hear about others' somewhat disabled adult children who function well, but that was not the story that Romeliotis was focussing on! She chose the tough one to tell and to watch, and for that she, and the parents who were interviewed, deserve our thanks!

Community is for all

It is a common misconception that individuals who are integrated in their community are only "somewhat disabled". The degree of disability is not the determining factor. There are countless examples of individuals with multiple and severe disabilities enjoying fulfilling lives all across our nation. We must all work together to ensure the necessary supports are available to all who need them.

cbc coverage

By accident I saw the first episode of the CBC feature and then watched the second night as well.

First of all, the issue is clear. Things are bad out there. We still have people living in institutions and it is rather clear that because of the lack of support and services the risks of repeating history grow by the day.

I believe the issue of the aging of the population and the rising percentage of budgets allocated to health care represent a tremendous threat; one that should alarm us all- especially young families who perhaps do not know the history as well as those who are older. The older people can easily see the threats and that it is not inevitable that the accomplishments we have achieved together will stay in place.

We all know people who are ending up at a relatively young age in personal care homes, seniors facilities and other long term health care places that are devastating outcomes.

Nobody should under estimate the scale of this issue, but I continue to be amazed at the low level of attention this issue is getting. We created a community based health care system for a reason; we created community based supportive services for a reason and from all appearances there's no corporate memory of that progression in governments.

The scale of the threat of many thousands of people falling into state custody through the inability of families to achieve succession planning on issues of "what happens after I’m gone" and "who will stand in my place" is not on the radar screen of governments. To my knowledge, there are no tables where community and government are burning the midnight oil to address this dire and certain threat. Of course there are competing demands for money which nobody denies, but the economic and personal implications of this crisis are not understood. This rapidly escalating crisis is not as high on the public policy priorities though it should be.

So what did the CBC contribute to this discussion?

They decided to shape this story from the perspective of the burdens people with disabilities place on caregivers. In order to do this, it is the common practice to portray people with intellectual (and other) disabilities in the worse possible light. As a parent in difficult circumstances, I resent this portrayal very much. Certainly the lived experience must consider that a lack of services and supports impacts the entire family unit. As a parent, the portrayal I wish to see would recognize the stresses families are under but not at the expense of de-humanizing persons with disabilities. Our lives center on ensuring a safe and secure future for our son and daughter and we matter very much in the analysis of those challenges. However, never do Kathy and I see our adult son and daughter as burdens and our circumstances as the center of the universe.

The general public could easily infer that we need institutions as a response to this challenge. If 9000.00 is the maximum supports a person and family can receive as was contended, there are serious problems and we are on that path, whether you would wish it or not.

The narrow focus on highly person circumstances and values overshadowed the wider societal issues. CBC fails to put this story in any perspective and to balance the tragic circumstances with a proper framing of the needed solutions. To do the story was an exceptional idea; the sole reliance on the plight of caregivers left out the most important element-the person. The well worn emphasis on the eternal child as a burden not a person, the portrayal of staff people poised to pounce like guards does little to look inside of the sacred fact that we are all people and deserving of respect, dignity, support and consideration.

CBC news coverage on adult children Developmental Disabilities

The two stories definitely evoke emotions and perhaps outrage at the way they were portrayed. I do believe one of the things that we absolutely need to stop doing is judging others if they do not or are not able to provide the type of care that the above two comments are speaking of. In an ideal world all of the people that require supports to live in their community and be a contributing member of that community would be in place. There are people who require 24 hour supports and usually need two people to assist them. I too have been blessed with a child that has some developmental delay. I was fortunate enough to be able to educate myself through opportunities that came my way to realize that integration was best. She is a thriving individual who is married to a wonderful man who understands who she is. They have a beautiful child who I adore. Jobwise there is nothing in my community (very small) for my daughter. She does not drive and I know that she would love to work once her daughter is in school. To judge someone's circumstance is never appropriate to offer support, understanding and care would be better. Perhaps some people will reach out because of these stories even if they create outrage in the way they were presented.

CBC's "Forever Child"

I am the mother of 4 adult children - two of whom have lifelong disabilities. Our son lives in his own home, is employed and is very involved in his community. Our daughter lives at home with her father and me and with necessary supports also enjoys many aspects of her community. Over the past 40 years, I have often cringed at comments made by people who I assumed didn't know any better. I wept as I watched CBC's first segment -- I wept for Ryan whose birthright to respect and dignity was displaced by the need to sensationalize. There is no doubt that the issue of aging parents as caregivers needs our urgent attention and I think we can all agree that it needs to be addressed in a way that respects all parties. I expected a CBC journalist would know better.

CBC National report Forever Child

When I heard that the CBC was going to report on two families that had children with developmental delays - my reaction was "oh no, here we go again. Put our children in the worst possible light - too violent to be at home, can't do anything, the title itself -forever child" My heart went out to the man who had no friends, no life he seemed to be ordered about and not wanted. I know part of this is for effect, but I couldn't help thinking how different his life could be. The young woman who was left at the respite centre. How devistating that must have been. Again with the right supports in the community, I bet that young woman would have been happier, less "behaviours" and needed fewer support staff had she had some control over her life.
Why can't we show how great our kids are. Yes they need support, but its a lot cheaper for families to take charge of finding great lives, homes of their own, and friendships, then what has been happening.
My daughter is now 27 years old. She lives with 2 other young women in their own home. They have a live-in support person. But they are responsible for their own laundry, cleaning, and helping with the dinner. They do need some support there. They have an active social life with their friends. This is facilitated by a support person, but they get together weekly to do various activities that they want to do. This summer they started camping. They loved it!
They are active members in their community, they vote at elections for all three governments. They are well known in their community - not because they are the 3 disabled people, but because they are neighbours.
Its time we took pride in our children, who do grown up, they are not forever children. My daughter is one of the most amazing people I know!

I am writing in response to

I am writing in response to Bonnie Heath’s synopsis of the great life her daughter is living. It would be helpful to other families if you provided more detail about the model where your daughter and her two friends live in their own home and a live in support person lives with them as “they do need some support there’. How is this home support structured? Do you employ home support workers through an agency or does someone live in with them full time. If it is the latter then either this person is a saint or your daughter and her friends have minimal support needs. If you have an agency managed support worker employee model then this is a high cost model that most families do not have access to. I find it frustrating that so many people who talk about the great fully included lives possible for people with developmental disabilities share very few details about the semantics that make these arrangements possible.

Our family lives in BC and we have spent a great deal of time and money trying to work out an optimal living arrangement for our son who is 23. We renovated a family home loaned to us through the generosity of Grandma, and found a peer roommate with fewer support needs than the “direct support with everything” care needs of our son. In BC there is a great deal of rhetoric about community living but the funding formula does not measure up to these lofty ideals. The funding formula provides for home share models whereby the adult lives in the home of a community member who gets paid as a contractor, similar to the child foster care system. The problem with this is the adult lives as a temporary resident in someone else’s home and it is not truly their home, to say nothing of the risks associated with these arrangements. I know there have been successful instances of long term relationships in these home share models but we wanted our son to have his own home.

The option we have is to find someone who wants to live fulltime with them and pay them as a “contractor” in a “family managed individualized funding arrangement”.

First, if we were lucky enough to find someone who had the necessary qualities to do this (and we have not been so lucky), we are at risk that the CRA will, a few years down the road, determine that we were actually in an employer/employee relationship and we are on the hook for back taxes.

Second, if we wanted to hire people as employees supporting our kids in shifts (even if also living in with them), the funding formula doesn’t allow for this.

Family managed individualized funding options are the only options available as the funding does not allow for agency managed supports. We also work fulltime, as do most families today. All of the work involved in attempting to set this up has occupied every spare second of my life for the past year while the paid employees at CLBC contribute nothing.

To see these people organizing and attending the endless rounds of conferences and workshops addressing the topic of “strengthening personal networks”, “it starts with community”, “Start with Hi” etc. etc. while earning salaries on the backs of the individuals and families in crisis is nothing but sickening. I can only say that they have indeed “lost their way” and should have a great deal of difficulty sleeping at night, as should the politicians who condone this.

The people employed in our crown agency, Community Living BC, spend all of their time spewing rhetoric about community inclusion and strengthening personal support networks and zero time designing the formal support systems needed to make this vision a reality. In fact, they are spending most of their time working to dismantle the formal support system all in the misguided notion that the community and “personal support networks” will step in to fill this gap.

My son is present in his community and our “network” of family and friends support him. This however does not provide for the day to day support needs that our son would need if he were to live in his own home outside of the family home. The neighbourhood can not provide for his 24 hour personal care and supervision needs. Yes, he should be fully included and present in his community but he still has formal support needs that cannot be met through this informal network.

The comments left by Bonnie reflect a lack of understanding about the day to day support requirements of the many people who could not possibly “be responsible for their own laundry, cleaning and helping with dinner” and therefore do not advance this discussion.

It is staggering to see the number of people earning a living on the backs of our sons and daughters all in this business of “community living” many effectively acting as the gatekeepers that prevent it.

CBC THE NATIONAL - STORIES -FAMILIES IN CRISIS

Excellent comments Laurie... thank you....frank