Letter to the Editor – Wellington Advertiser – Nov 5, 2017.
Re: Community Living officials, families at odds over status of day programs (Oct 27, 2017)
First, I would like to thank reporter Mike Robinson for delving into this story, taking a balanced approach, and looking at all sides. I do, however, want to respond to the Executive Director’s many false claims made in the article and provide evidence that Guelph Wellington Community Living is in breach of some of the recommendations set forth in the Ombudsman and the Ministry of Community and Social Services directives.
In 2015, in the Wellington Advertiser (Jaime Myslik, Dec 25, 2015), Ms. Hanley stated,
“Those who attend day programs at the Harriston, Mount Forest and Erin offices shouldn’t see any changes in their programming…And the majority of those who attend the Fergus office also won’t see any changes.” This was a relief to the many families whose adult disable children attend these day programs. Hanley’s statement two years ago, aligns with the CLGW Annual report (2016) a year later, which similarly noted, “On December 1, 2015, the Minister of Community and Social Services announced the eventual closing of the sheltered workshop portions of agencies such as ours. Our commitment is to take an individualized approach towards integration and social inclusion within the community through finding employment/volunteer opportunities for those who are interested while still offering in-house, opportunities and activities that promote people having a meaningful day” (p. 7). Ms. Hanley may have forgotten her own statements, and those presented in the CLGW reports, however, the critique that follows provides evidence of her duplicity.
On Oct 27, 2017, Advertiser, Ms. Hanley states, “the first goal is for clients to be in the community unless they are not comfortable.” I think this is the most telling aspect of Ms. Hanley’s comments because she is stating that her goal is to have clients out in the community, but what do the clients and their families want and need? What are their goals? Ms. Hanley and the Ministry never asked us. I’m wondering why Ms. Hanley did not meet with families and clients in Fergus or Guelph a year and a half ago let families and clients know that 90% of the programs would be stopped in the Fergus building – so that her “first goal” could be met. The first goal of families is very different from that of Ms. Hanley’s and, had she asked us, we would have told her that families “first goal” is to have our children happy and healthy in a safe day program environment with lots of friends, consistency, structure, and routine, which formerly existed because of the balance of “in-house” and community-based activities. It is these important factors that have allowed those with developmental disabilities to thrive throughout their lives here in Fergus and Guelph. Moreover, workers who used to bring clients from the group homes into town for the day program were reassigned to work strictly in the group homes, rather than bringing their clients to the day center to work collaboratively with other staff to implement programming. Workers and clients were not warned about the exit of these clients and workers, just told they would no longer be coming to the Fergus building. My sister and our family, for example, had no warning or knowledge that workers that she had bonded with for 20 years would be in her life one day – and out of her life the next. Accordingly, because the group home clients are no longer transported to the Fergus site, the remaining 6 or 7 clients at the base have lost important life-long relationships – which is one of the highest priorities in their lives. From an attachment perspective, according to Dan Siegel developmental psychiatrist, removing 20 or more friends and support workers from their lives overnight without warning, consultation, or a chance for families to help their adult children work through this transition has been traumatic and likely psychologically damaging for them; although they have no way to communicate this except through the externalization of adverse behaviors. The Select Committee on Developmental Services appointed in 2013 by Legislative Assembly of Ontario to report on the recommendation concerning day programming states that: “The IMCDS [Inter-Ministerial Committee on Developmental Services] collaborate with families and community agencies to develop and support locally-based day programs. These programs must be affordable and regionally available and tailored for a range of age groups, interests, activity levels, and needs” (2014, p. 20). There has been absolutely no collaboration with families regarding the changes in the Fergus or Guelph day programs. Thus, Ms. Hanley and CL have ignored this recommendation in favor of taking control of our disabled children’s lives without family collaboration, consent and in many cases even our knowledge. Furthermore, the Ombudsman report (Dupé, 2016) and directives from the Ministry of Community and Social Services and Community Living itself stated that there was no intention to move activities and structured programming out of the community living buildings. But this has now happened.
Regarding moving clients out of the day program buildings, Ms. Hanley’s second statement, “unless they are not comfortable” sounds empathic, however, the problem is, Ms. Hanley has stopped 90% of the programs that were run in the building in Fergus and many have stopped in Guelph as well – so those who are “uncomfortable in the community,” after the fact, now have a lot of spare time – with very few structured groups now running. So, where do the “uncomfortable” clients go now Ms. Hanley? And what do they do in the day centers now that you’ve stopped all the programs that used to run in them? Many Guelph families state, their children “now wander around the Guelph building.” My sister now has more “leisure, recreation” hours where she is put under stress to make decisions about what she wants to do with her increased hours of unstructured free time. She is isolated to interacting with the same few people day in and day out and she is sent to a group home now to do some of the activities, she used to do at the day center. Incidentally, my sister lived in this same group home for 2 years and was removed because she was physically abused by another resident (the resident did not understand the consequences of their behavior so we have no animosity towards them at all). My sister went into a deep depression due to this and we brought her back home to live. However, because the kitchen space has been rented out to another group at the Fergus building, my sister now goes to that same group home where she was abused to do baking, cooking and other activities; thus, she is forced to interact in the home and with the person who abused her. This decision to move her activities from the Fergus building to that group home was never discussed with our family. It just happened.
In the article (Advertiser, 2017), Mr. Arnott states, “There needs to be open and honest communication with families. If programs are changing, before the transition takes place, new programs must be in place and ready to go.” This has not happened. Nothing was put in place to deal with those who don’t want to be forced into the community 100% of the time from Monday-Friday 9-5. The activities that used to be available to my sister in the building gave her opportunities not possible in the community due to her disability. And she was under much less decision-making stress.
Hanley also states that after renting out the lower part of the building, “We still have the whole upper level…noting there are numerous day programs operating at the center. Some include horticultural programs, music-based therapy, safety, recreation activities, literacy, financial, and iPad training.” I personally met with the head of the Fergus base and a support worker on October 30th at 10 am who confirmed for me that the safety, financial, horticulture, and literacy programs are NOT running in the building. As for the iPad program, I was told: “if someone brings in an iPad we will show them how to use it”. Thus, it is not an actual “structured program” anymore. So, Ms. Hanley is either being deceitful or is completely unaware of what is going on at the Fergus and Guelph Community Living Centres. Furthermore, I’m wondering why Community Living spent tens of thousands of dollars to completely renovate both floors, including a full kitchen reno, of the Fergus building, only to shut down the activities in them and rent the space out, a year later. Great use of our tax money. I’m also wondering why CL did not work with clients, families, and the community to create new programs of interest in the newly renovated building in Fergus and in Guelph so that clients would not be wandering around, or isolated in group homes. This would have provided a balanced collaborative approach that would have been fully embraced by families and clients, while also meeting the IMCDS (2014) recommendation to “collaborate with families and community agencies to develop and support locally-based day programs.”
Ms. Hanley also stated, “We’re trying to base them [activities] on what their interests are,” she said, adding “if there was a program offered in the community, We would go… people who do not fit into regular community programs can attend Community Living day programs – and they will continue.” But how can the clients who “do not fit into regular community programs” continue in the day program, if programs no longer exist in the building? Furthermore, what if the clients don’t want to be in the community? My sister and many clients are incapable of going against an authority figure to speak up for themselves regarding what they may or may not want to do. Moreover, with all but three structured programs eliminated from the building in Fergus, what day program activities does Ms. Hanley think clients can “continue in” if they have now been canceled?
Now that the 20 or so clients who live in the group homes are no longer transported to the Fergus building, there are only maybe 6 or 7 clients using the building a few hours per week. Baking, cooking, running the funky monkey café, woodworking, Yoga, Smart Exercise, Literacy, and sewing, were structured “in-house” groups, but now clients have been told to find and do those activities in the community. Hanley touts this as “client-centered programming” but how can it be client-centered if “special needs” groups and classes are now canceled. Many of our children cannot do the activities in community settings, they need special assistance by trained support workers, something that cannot be found in classes held for neuro-typical people out in the community. In my mind, this “forced inclusion,” is abusive, detrimental, and harmful to clients. Moreover, the fact that these practices have been imposed on a vulnerable population, without caregiver consent or knowledge is an abuse of power.
Accordingly, Families argue that Community Living (CL) and the Ministry of Social and Community Services are “doing to clients and families” rather than “working with families and clients,” as they dismantle the day programs (move them out of the safety of the CL buildings). This sense that Community Living thinks they get to do what they want, whenever they want, and to whomever they want, was confirmed again this past week when I attended an ODSP meeting at the Fergus base. Ms. Hanley had set up a camera at this family meeting to film and later webcast the speaker – which she told us about and that I actually thought was a good idea. However, when the cameraman surprised us by turning a second camera around to tape the audience, I interrupted the meeting and reminded them that due to FIPPA (The Freedom of Information and Protection of Privacy Act – which Community Living is supposed to be following), they needed to have consent before filming parents discussing personal issues regarding their children’s finances. They stopped filming the audience, but it was clear that Community Living is not in the habit of asking for consent – they are so used to “doing to people,” they don’t even seem to know they are supposed to ask for consent – either for filming or when they decide to completely disrupt our adult children’s’ day program.
I urge Community Living and Ms. Hanley get schooled in the practice of human rights and freedoms, FIPPA, and the calls for a collaborative family decision-making approach made by the Ombudsman and the Ministry more than two years ago. It is unethical and immoral to be making traumatic psychologically life-altering decisions “TO” the lives of others without family consent, consultation, or assistance.
Your choice to make your own goals (moving everyone into the community and out of the CL buildings) a priority over that of a vulnerable and innocent population, and their aging and elderly parents, demonstrates that you and the Ministry of Social Services think you know what is best for our adult children, and that you alone can make these decisions. For the past 2 years, you have had the power to do this, and parents, particularly those who have children in your CL operated group homes, have been too afraid to speak up because they need the support you provide for their children as they themselves grow old and incapacitated. They have been at your mercy, but not anymore, we are speaking up now and will continue to shine a light on these actions so they become transparent enough to evoke change in your association.
Sincerely,
Dr. Katherine Harper, PhD.
and the concerned families of Guelph-Wellington Community Living
katherine Harper