Imagine for a moment you're a person with a developmental disability. You've been living in a group home for 5 years, or maybe even 20. Your caregivers and your roommates are like family to you, maybe they are your only family, as relatives slowly age and pass away. They know you at your group home - what you like, what you don't. You enjoy their company and they enjoy yours. People at your local stores and places know you and if you need help, all you have to do is ask and you will get it. Because you are known, included and valued as a member of your local community.
Now imagine that you are told that your group home is going to close and that you have had a "review" and it's been decided that you are going to leave your family and home and go live with some strangers in what you're told is a "home share."
The new place is on the other side of the city, or even in another town, far from everything and everyone you know. Why do you have to go? Don't they know this is your family and your home? You know where everything is and you like it here. How come you weren't asked what you wanted? And your family wasn't asked either? How come they did a review but you weren't included in that? They didn't even ask you what YOU wanted or where you wanted to live!
Welcome to the world of the developmentally disabled in BC. Under the cover of secrecy, of silence and exclusion, Community Living BC has been embarking on re-assessing the care needs of individuals around the province, without their participation, involvement and inclusion. Individuals with developmental disabilities and their families have been systematically cut out of the re-assessment and decision-making process entirely, completely going against the core values and mission that CLBC was supposed to stand for.
Last night, October 25th, I attended the Skills & (Dis)Abilities Public meeting: a Community Response to Provincial Budget Cuts & Service Redesigns in BC's Community Living Sector. You didn't miss the write up in the paper, there wasn't a single journalist in attendance. Not one. But there was a huge hall filled with people who are gathering momentum in their united voice to fight back against the systematic dismantling of the sector. They are fighting back against their exclusion and the disrespect being demonstrated towards those who must have a say in their own lives.
A panel of six individuals with involvement in the sector, from parent advocates, to executive directors of the BC Association of Community Living and the BC Coalition of People with Disabilities and the Developmental Disabilities Association (DDA) spoke. A union representative also spoke from the BC Government & Service Employees Union (BCGEU) front line Community Social Service workers.
The common theme mentioned in many of their presentations was that the goals and mission of Community Living BC, of inclusion of individuals with developmental disabilities in client-centred planning, the participation of their families and true choice in services and supports have become pipe dreams. These core values and operational principles and policies have become sacrificial lambs to cost-cutting by an unaccountable, uncommunicative, and increasingly secretive and uncaring organization.
Another theme noted was the serious lack of communication, the secrecy and exclusion of individuals in the "service re-design" that CLBC is carrying out around the province. The only word one can use to describe these actions is subterfuge, which is defined as "an evasion," "to evade, escape, flee by stealth," from subter "beneath, secretly" + fugere "flee."
Different speakers told the audience about CLBC stealthily using unproven draft assessment tools that look at an individual's current care needs, but neglect to capture individuals' past and future needs. Individuals, their day-to-day caregivers and family members, who all know them much better than assessors have been completely shut out of the re-assessment process.
The outcomes of these assessments often see individuals no longer being "qualified" to live in group homes and structured care and recommendations are made for moves to far less expensive "home shares" or "live-in roommate" situations. It should come as no surprise that the driving force and agenda behind this stealth is to close as many group homes as possible in BC.
The BCGEU just released a memo, stating it "has learned at least 10 group homes have closed or are closing across the province, with a loss of approximately 34 places (or "beds"). There's the potential for 10 (or more) additional shut downs by 2011. "
What are the objectives? For CLBC, it is pure & simple dollar savings. They have been told by the BC government, they must cut $22 million from your budget. In government speak, it's called "finding efficiencies." It doesn't matter how that happens, but do it. As mentioned in an earlier post on Advocacy BC, Gutting the Community Living and Social Service Sectors Continues, CLBC lost millions in funds (hmm, $22 million?) when Children's Services went back to the Ministry of Children & Family Development. No more cushion fund.
Another theme that stood out from the presentations was the quick pace and speed at which group homes are being closed down and the lack of time and transition-planning that many individuals are being provided to make sometimes monumental life changes.
I don't care who you are, or what your level of functioning, when major life changes are to be made, we all deserve and require time and strategic planning for making transitions so that the least disruption possible occurs. Our holistic health requires this kind of consideration, preparation and care. For many people with special needs thoughtful and well planned transitions are crucial to maintaining health, stability and dignity. We heard that this is not happening for many individuals.
The theme of the downgrading of access to services and supports was inescapable, as was the feeling expressed by many that things in the CL sector were going backwards. Family members spoke of receiving the clear message that if they did not like the changes in care for their loved ones, they were welcome to assume full-time care for their relatives. For an aging and sometimes ailing population, who love and have a right to advocate for their family members, this kind of intimidation and coercion is deeply concerning.
Some presenters provided a brief history of the system of care to individuals with developmental disabilities to bring context to what was happening today. Initially, individuals were placed in institutional care, in places such as Woodlands, Tranquille, Riverview and other places where we now know that in some cases, horrific abuses occurred, with no redress for the harm done, nor accountability.
Later, de-institionalization began, with the province moving to fund group homes administered by community agencies. These offered more of a home atmosphere with fewer clients and a greater emphasis on inclusion of individuals with disabilities in their communities. This was to be celebrated and a new day came where people with disabilities were not hidden away and they were valued, respected and treated with much more dignity, with their strengths and personhood treated with value and inclusion that most of us take for granted. The harrowing and dramatic point was made that now, in 2010, people with developmental disabilities in BC are being "auctioned off to the lowest bidder on Craiglist."
As one speaker mentioned, in the CL sector, there is room for respect for all models of care and that standards and policies that are human rights based with respect, dignity and inclusion as the foundations to care are required. We heard over and over that care and funding must be driven by an individual's needs, not the other way around and that client-centred care is the best practice model.
A final theme that was elaborated on throughout the evening was the profound lack of oversight, accountability and monitoring that the CL sector continues to operate under. Many mentioned the strong and highly respected advocacy of BC's Representative for Children & Youth for the province's young people. There was a deep longing expressed by many for a similar role where the developmentally disabled are concerned. In previous posts, I have also advocated for an independent officer of the Legislature, an Advocate for Vulnerable Persons. As we heard last night and what I know experientially as a social worker, there is a great deal of overlap in the issues facing vulnerable people and I think an inclusive office would be best to offer support and advocacy.
As was pointed out, the Community Living Authority Act (2005) is a hollow, toothless bit of ink that sets the bar very low for people with disabilities. All CLBC has to do, under Section 11 of the Act is: "provide for the delivery in British Columbia of community living support using available resources through its own employees, or by entering into agreements with the government or other persons to deliver or provide for the delivery of that support."
CLBC does not have to be accountable for how they provide services, or whether they keep accurate waitlists (or lists at all). There is no robust complaints mechanism, nor recourse for the failure of CLBC to include individuals and family members in planning, or change with respect to residential, or any other services.
A recent letter to Jane Holland, BC's Advocate for Service Quality, demonstrated very clearly the complete lack of will and absence of monitoring, oversight and monitoring of the CL sector, which leaves CLBC with the authority to basically do what it pleases, no matter the damage done to individuals, families, or the public good.
The letter, signed by the B.C. Coalition of People with Disabilities, the Developmental Disabilities Association, B.C. Government and Service Employees' Union, Moms on the Move and B.C. Family Net Society emphasized the following concerns:
- Funding and service reductions
- Restriction of staffed residential options
- Home sharing
- Guide to Support Allocation
British Columbia's community living sector is in crisis. Adults with developmental disabilities are at risk, as is the residential service and community inclusion infrastructure that supports them. Service and support options are being reduced, not expanded. Individuals and families are not being consulted.
They called on Holland to use her office and authority to do a number of things, including:
- End to cost-driven closures, redesigns and service reductions...
- Renewed funding and support for individuals who choose group homes as their preferred residential service option...
- Ensure that "adults living in residential alternatives to group homes (and their families) will be consulted to determine if they are living in their preferred residential option."
- Carry out a "thorough review of home sharing costs, outcomes and best practices in B.C. and other jurisdictions, and the development and implementation of a regulatory framework for home sharing..."
- Advocate for a "freeze on GSA assessments and an immediate review of the GSA tool and its application."
"Thank you for your letter outlining your concerns regarding community living services and supports. As stated, of [sic]mandate includes participating in ministry and CLBC initiatives related to policy and planning, however, it does not extend to recommending the actions of other organizations. Recommendations made by my office relate directly to the calls I receive. I do appreciate your concerns and am forwarding your letter on to Community Living BC for a response."
What are the outcomes? Well, like the story I told above, individuals are now seeing their group homes being shut down. They are being told, often with little notice, or transition planning, that they will go live with strangers. What they are not likely told is they will be going to live with people who answered ads on Craigslist. Don't believe me? See for yourself:
From MOMS a list of Craiglist Ads for "Home Shares"
An important consideration also mentioned was the loss of experienced, skilled and caring front line workers. Lindsay Kines, of the Times Colonist, one of the only journalists in BC who is writing on the Community Living sector has a story here that discusses this further.
Over the years, working in group homes for special needs children and youth, I've definitely worked side by side with people who had absolutely no compassion, care or any business working with individuals who require professional care. I cannot stress the importance of ethical, humanistic care that ensures the dignity and respect of individuals who can thrive in those kind of environments.
The most moving and compelling speaker of the evening was a parent advocate and a long-term care aide. She spoke of the great difficulty she had in getting help for her daughter, who required access to support and resources for her complex care needs. In a move known to far too many parents in BC, she described with pain, sorrow and heartbreak how, as parents, they had to give up their parental rights so that their child would be taken into the care of the province so that she would get the help and resources she required. No parent should ever be faced with that decision. Not one.
She described how, after years of battling her inner demons, her daughter had found a degree of stability in a group home, only to be told abruptly that her care needs had been re-assessed (without her involvement, or her family's) and that she was no longer qualified to live in her group home, which was also being closed. She was going to be introduced to the woman, a total stranger, who was to become her "home share" caregiver. The caregiver, a single woman with no training, no specialized skills or experience had not been fully informed of the severe risk of aggression, abuse and violence the young woman posed to herself and to caregivers. She was not informed of, nor able to provide for the complex care needs she had. Upon learning more, the proposed caregiver refused to provide care for her daughter.
This very personal and moving narrative painted the picture of many individuals and families involved with the CL sector. The client had no involvement, or say in her care plan. Her rights to self-determination were completely extinguished. Her family had no say in what CLBC planned to do with their disabled adult child. There was no transition, or consideration to the damage of the lack of involvement and inclusion in planning. There was no consideration of the liability, responsibility and accountability of those making these decisions if her daughter, or the proposed caregivers, or others were hurt, or worse.
Potential outcomes we were warned about, and that history has demonstrated, include the following: increasing costs associated with the use of more expensive acute care, increased hospitalizations, destabilization of mental health, increased psychiatric problems, drug and alcohol use and homelessness. Housing insecurity, public safety and strain on other systems of care will also contribute to further problems in communities around the province.
Solutions, There are Many
After small table brainstorming, participants in the meeting brought together their ideas for solutions. Many were shared and simply commonsense. Here are some of the solutions that were made:
- An Independent Advocate for the Developmentally Disabled - where individuals and family members can make complaints that will be investigated;
- Legislation that has teeth and sets out statutory obligations to persons with developmental disabilities;
- A system that is Client-centred, based on independence and self-determination and fully includes individuals and their families in exercising their rights to choice in their care and in having their needs fulfilled.
- Creation of a system that has checks and balances, that examines outcome measures and information on service quality of different types of residential resources
- A system that is involved in authentic, transparent, meaningful and effective quality assurance activities and that includes a wide range of stakeholders;
- An inclusive, well thought out and informed plan for service re-design that is open to feedback, identification of issues regarding changes and outcomes;
- Ensure that the capacity and skills of workers in the CL sector are considered, that front line workers are retained and that work in communities is respected and valued;
- The push toward paid employment for individuals with developmental disabilities is lessened;
- Getting stories out to the media, through local and provincial papers and through Public Service advertisements and commercials aimed at educating;
- Direct political action, such as convening in Victoria at the Legislature to let elected officials know that the CL sector deserves attention, respect and effective administration and an adequate budget;
- A formal complaint and request for investigation of the CL sector by the Ombudsman;
- Increase grassroots and community outreach and development;
- Educate and inform MLA's, MP's and involve high profile individuals to bring attention to what is happening in the sector;
- Consider the merits of Human Rights challenges and strategic litigation regarding Canada's statutory obligations under Human Rights codes and as signatories to international Conventions;
- Pressure CLBC and it's leadership to live up to the organization's vision, values, mandate and mission and to be more inclusive,transparent, respectful and walk their talk where individuals with developmental disabilities are concerned and service re-design continues;
- Increase individual and family advocacy and continue to enhance self-advocacy, empowerment and building capacity within the sector for individuals, for workers, for families and other stakeholders.
A resounding feeling of betrayal was heard throughout presentations and in the small group work. A betrayal of the BC government for not caring about people with developmental disabilities, or their families. A betrayal of CLBC to operate in good faith, with due diligence and in the best interests of clients and the public good. A betrayal of CLBC to live up to it's core vision, values, mission and mandate, which state:
We believe that individuals and their families know best when it comes to their needs, goals and planning for the future.
CLBC responds to the needs and goals of individuals and families by recognizing their abilities and contributions, sharing leadership with communities, and funding supports that honour individual choice.
Read here about what CLBC says it's values are and see if they are living up to them.
People Power: Time for Action
Do you want to get more involved in fighting back against the unjust, unfair and secretive changes happening in the CL sector in BC? People power is how change is made.
Here are a few ideas for how you can and I'm sure you will have more too:
E-mail, or call Premier Campbell, new Minister Krueger, Jane Holland and CLBC to let them know how the service re-design is impacting you, or your family member. Or just tell them what you think about all of these changes and the impacts on others. Make sure to also let your elected MLA in your area know your thoughts too.
Find your MLA here.
Here are some e-mails & phone numbers that will help:
Premier Gordon Campbell
Tel: 1-250 387-1715 or 604 660-3202
Kevin Krueger, Minister of Social Development (from Kamloops)
Tel: 1-250 953-4246 or 1-250 314-6031
Jane Holland - Advocate for Service Quality
phone: 604 775-1238
Fax: 604 660-1505
If you live outside Vancouver, call Enquiry BC and ask them to transfer you to Office of the Advocate for Service Quality's office at 604 775-1238
Victoria residents call Enquiry BC at 250 387-6121
Elsewhere in B.C. call Enquiry BC at 1-800-663-7867
E-mail CLBC here: email@example.com
Call CLBC @ 1-877-660-2522 or 604-664-0101 in Vancouver.
Rick Mowles is the CEO of CLBC. He can be reached at the above numbers and e-mail.
Denise Turner is the Chair of the CLBC Board. Call, or e-mail above to make contact with her.
You can also ask for the Director of Quality Assurance to let CLBC know what you think of their service re-design, or individual planning.
Find your local CLBC office here and ask to speak to the manager.
Make sure that your CLBC Community Councils know how you feel about the changes, or tell them your personal stories. They are there to represent the people, not CLBC, or the government. Find your Councils here.
Write a letter to the editor, or an Opinion Editorial to your community newspaper, or to the big papers. Here are the e-mail addresses for the big guys, who are mainly ignoring the Community Living sector:
The Province - firstname.lastname@example.org
Vancouver Sun - email@example.com
Victoria Times Colonist - firstname.lastname@example.org
Globe & Mail - email@example.com
Find your local community paper contacts here.
Join the Facebook page, CLBC Connections! - A place to meet for self-advocates in BC. There are probably other pages and groups too, share those with others when you find out about them.
Make sure all political parties and people who are running for office know that to get your vote, they must have a platform and plan for the Community Living sector.
Hold events in your area and include a wide range of stakeholders - individuals with developmental disabilities, family members, workers in the sector, unions, CLBC council members and local politicians. Come up with your own action plans.