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Winnipeg Free Press
Letter to the Editor
The Province of Manitoba recently released the report by KPMG which has made alarming suggestions that could have profound and damaging effects on the thousands of individuals in Manitoba who have an intellectual disability, as well as their families. Although the government says not to worry as the report is only “advice” some of the content is hauntingly similar to messages the community has been hearing from departmental staff for some time.
The most egregious recommendation is the suggestion the department re-visit what is meant by the principle that individuals with disabilities be supported “to live and participate fully in the community”. We would welcome such a discussion on one hand as the funding available does not currently provide adequate support. But in the context of the report it is clearly a call to provide less and is a chilling prospect for affected individuals and families. The American Association of Intellectual and Developmental Disabilities (AAIDD) says this on the topic.
“Community living and participation means being able to live where and with whom you choose; work and earn a living wage, participate in meaningful community activities based on personal interests; have relationships with friends, family and significant others; be physically and emotionally healthy, be able to worship where and with whom you choose; have opportunities to learn and grow and make informed choices, and carry out the responsibilities of citizenship such as paying taxes and voting”.
We assume the department has some respect for the AAIDD as they have imported an expensive and complex funding model developed by the AAIDD called the Support Intensity Scale. However, there is no evidence provided by the government that the AAIDD funding model as they intend to utilize it will support the AAIDD definition of community living and participation. Indeed the message has been the opposite. Coupled with the KPMG suggestion which presumably the department has had for some time, these messages strike at the heart of the community living movement and threaten to reverse decades of progress for some of our most marginalized citizens. Are these the people on whose backs the government wants to balance its budget?
Service providers and advocates in the community have been engaged with the department for months now and yet still do not know the plan for much of the system. Recent events create a need for there to be concrete and meaningful discussion on this and many other outstanding questions.
We remain optimistic that once government re-visits this question and engages fully with the community they will abandon the regressive path they seem to be on.
Chair of the Board -Community Living Manitoba
Unit 6 – 120 Maryland, Winnipeg MB R3G 1L1
- by Maia Idzikowski
People First is a national resource centre for self-advocates. It’s the country’s go-to place for anyone with questions or issues regarding advocacy. People First is unique because its board consists of people labelled with intellectual disabilities, showcasing that people are capable beyond society’s expectations.
I recently had the opportunity to interview Shelley Fletcher, the Executive Director of the organization, who shared some of her experiences and insight.
Shelley is passionate about her work with People First. She is determined to resolve many of the issues that self-advocates face. However, she did not always know that working with individuals with disabilities would be the best career path for her. Shelley started volunteering with Special Olympics when she was 18 years old. A few years later, after receiving a college diploma in Business Administration, she started working for Investors Group. In fact, she was more excited about going to volunteering than going to work. Thus, Shelley decided to begin working with people with intellectual disabilities, and everything fell into place.
A typical day in Shelley’s work life consists of “no less than 100 emails a day”, and involvement in numerous committees and public speaking events. Shelley currently sits on a committee with Elections Canada, whose work focusses on making voting more accessible for individuals with disabilities. Shelley is also authoring a presentation for the upcoming Canadian Centre on Disability Studies conference. Part of Shelley’s job is to organize the logistics and writing of presentations and speeches, and then work with the members of People First and prepare them to deliver and facilitate these presentations and speeches.
Shelley works closely with politicians both provincially and federally. One MP whom she works with even took forward and passed a Private Member’s Bill on employment and disability. Shelley also facilitated the volunteer placement of a self-advocate in the office of this MP, which led to employment at the House of Commons. Working closely with People First, this self-advocate was able to have a direct impact on the hiring criteria at the House, and obtained the position despite not speaking French.
When asked about her experiences working with individuals with intellectual disabilities, Shelley had numerous stories to share. Twenty-five years ago, Shelley began working with one gentleman named Chris. For the first five years, Shelley worked with Chris at a day program, and then for five more when Shelley became employed at the agency that supported him residentially. During her maternity leave, Shelley resigned from that specific job and went on to another place of employment. When she went to find Chris and see how he was doing, information was hard to come by due to privacy and confidentiality laws. Twelve years later, Shelley discovered that Chris had become ill and was living in a nursing home. Twelve years later, upon visiting him at the nursing home, the first thing Chris said to her was “Shelley Dawn Fletcher, where have you been?” Since then, Shelley visits Chris weekly at the nursing home, and recently she has become Chris’ co-substitute decision maker and he is no longer under the order of the Public Trustee.
Over the past 30 years or so, Canada has seen drastic changes to the rights of people with intellectual disabilities. I asked Shelley what she thinks still needs to be done to ensure that self-advocates have equal rights. In her opinion, the largest challenge facing self-advocates at this time is the ongoing battle of having the basic right to choose where they want to live and with whom. There is legislation in place establishing this Right, however it is not yet widely enforced. People First, consequently, is challenging governments with the question ‘Why not?’. Why is this legislation not enforced? Why are the rights of these individuals not upheld?
People First of Canada is part of a National Task Force along with their colleagues from the Canadian Association for Community Living (CACL) which focuses on the right to live in the community. Together, they are spearheading a research project aiming to understand why individuals with really great needs are granted the opportunity to live in the community, while others do not get the chance.
Following this thought, I inquired about the ultimate goal in regards to inclusion. The bottom line is that when individuals can live on their own and have full control of their lives, we will be heading in the right direction of an inclusive society. Ultimately, the goal is that advocacy organizations will not have a need to exist. The non-profit organization LIFE, which has a program called In the Company of Friends, is an excellent example of how people should be living. It is a person-centred model where the person receiving services and supports is truly in total control of their lives.
I asked Shelley, furthermore, about the types of situations that require individuals with intellectual disabilities to advocate for themselves. People First of Canada focusses on the ‘bigger picture’ in Canada. An example of this would be legal cases that are of national scope. People First of Canada worked on the ‘Eve’ case 27 years ago and due to their contribution to that case, people with intellectual disabilities are no longer allowed to be sterilized in Canada. Another example of this is the Tracy Latimer case. People First intervened at the Supreme Court level and advocated to remind society (and the court) that Tracy was the victim in this case, not her father. (Whom was found guilty of murdering his daughter.)
The true experts on intellectual disabilities, without a doubt, are the people who live with the label. People First of Canada is piloting a five-year national education project targeted to students in Grades 7 and 8 across Canada. The Language Project is delivered by members of People First, and teaches youth about the negative connotations associated with the “R” Word. In this manner, young people across Canada will learn about stigma and societal misunderstandings from the individuals affected by these issues.
Shelley, additionally, revealed some of the challenges that arise out of her professional work. Achieving inclusiveness has been a slow process with gradual progress being made. A lack of political will to spearhead change, as well as societal thinking and stereotypes hold back individuals with disabilities. With the upcoming election, moreover, the current challenge is to engage the candidates into stimulating discussion over disability issues.
On a final note, I asked Shelley if there is anything she thinks everyone should know. It really comes down to the fact that everyone has the right to live in the community, and this right is not being met and fulfilled. In some provinces, there are zoning laws stating that people with disabilities cannot live within 200 meters of each other if they are receiving services. Residential licensing laws are prohibiting self-advocates from owning a key to their own group homes. In another case, a provincial government asked a London Professor to move to their province to teach, but sent the family back when they had a baby with Down Syndrome. A ‘burden on our medical system’ is what they were told. This is simply outrageous!
What this boils down to is our laws and legislation. The UN Convention on the Rights of Persons with Disabilities states that every individual has the right to inclusive employment (Article 27) and education (Article 24), along with the right to live in the community (Article 19), the right to legal capacity (Article 12), and the right to raise awareness and advocate for oneself (Article 8). Working with members, People First of Canada is twofold: it teaches its members about these rights (and the responsibilities that come with them) and how to gain access to inclusion within society. It also works with communities across the country teaching them about people’s rights. Advocacy is a powerful tool that drives change. Without it, rights would not be obtained and secured, and the most vulnerable in our society would be overlooked.
- by Maia Idzikowski
After coming across Inclusion Alberta’s engaging and informative Pocket Guide to Advocacy, I decided to summarize a few of the main points. All quotes below are taken directly from the Pocket Guide to Advocacy, which can be found here.
The Pocket Guide to Advocacy is divided into three main sections: Introduction, First Steps and Taking Action, which are indicated below in bold.
In order for a child to be fully included in the community, advocacy is inevitable. Every parent is required to advocate for what is in the best interest of their child, regardless of the child having a disability or not. Advocacy pushes barriers and in working together, parents can collectively address and remedy the challenges that are encountered on a daily basis. Overall, this will immensely benefit the community.
Unfortunately, challenges will arise in a parent’s journey in regards to advocacy. Parents will encounter individuals who do not fully value individuals with intellectual disabilities, and this will make inclusion a challenge. While advocacy may be viewed negatively, and will not be appreciated by all, it is important to keep in mind that advocacy is a “necessary and beneficial social good” (page 3).
In order to help parents along their advocacy journey, it is empowering to be a member of a family advocacy network or organization. For instance, the various Community Living Branches across Canada connect families with conferences, workshops, and family networks in order for parents to become successful and effective advocates in their community. Advocacy is extremely important; it will ensure that your child has the supports and services he/she requires. Moreover, it is extremely natural for you, as a parent to experience self-doubt and uncertainty. While these doubts can help you improve your advocacy skills, it is “important that these natural self-doubts do not overwhelm or paralyze you” (page 6).
When beginning your advocacy journey, it is critical that you establish a vision for your child, and clarifying “your vision for your son or daughter’s inclusive future is critical to any successful advocacy" (page 7). Your vision is something that you will refine as your child gets older, and it is also helpful to share your vision with others. Being able to clearly articulate and understand your vision is critical because there will be times when you will be required to explain and defend your vision in the presence of individuals who do not necessarily agree with it. Ultimately, “your vision is the benchmark you will use to determine which compromises you might make and which you will not” (page 9).
In aiming to achieve an inclusive life for a child, a parent will often pursue a normative pathway. A normative pathway is defined as the “path most people in our society typically follow through life” (page 9). Young people, for instance, go to school, get part time jobs, and go to college or university. As a parent, you can aim to have your son/daughter included in some of these pathways. Ultimately, advocacy is about creating the possibilities and opportunities for your child to have a meaningful and fulfilling life.
When in an advocacy situation, keep in mind that other parties may have allegiances to other interests including agency policies, budgets, and personal beliefs and values. Consequently, you should never compromise in ways you are not prepared for. Others may use the statements “we are all here for the same reason” or “we all have the same interests in doing what is best” (page 11) to try to misrepresent the true interests of various stakeholders and parties involved.
Being confident in your ability to advocate for your child is the key to successful advocacy. It is also important to understand that being emotional is ok. After all, you are advocating on behalf of someone for whom you care deeply. In order to prepare yourself for advocacy, examine your vulnerabilities and weaknesses. “For example, if you know you are likely to lose your cool or breakdown when someone devalues the presence of your son or daughter, then you can think about how to prepare yourself. At that point you may want to take a break, have your advocate or ally respond or having prepared yourself for this moment, take a deep breath and take your time responding” (page 14).
Confidence will help you resist the urge to compromise. Being cooperative is ideal, but “do not mistake cooperation and pleasantness as more valued than taking a stand on what is right and true…You do not have to be angry or aggressive, but being assertive is valid when it is your son or daughter who is relying on you to protect their well-being and future” (Pages 15-16).
Preparation- the meeting
Consider the following:
- Who will be at the meeting (Who you bring to support you at the meeting will depend on the type of meeting and the other parties in attendance);
- Who has the authority to make the necessary decisions (ideally, this is who you want at the meeting);
- Who you need or want attending the meeting;
- Who will be taking notes;
- Who will chair or facilitate the meeting;
- Who you will bring as a representative (You are always entitled to bring an advocate, just let the other party know you will be accompanied at the meeting). If the other party refuses to allow you to bring an advocate or representative, then postpone the meeting until this is resolved. Do not attend meetings where the terms of the meeting have been planned unilaterally;
- How long will the meeting be scheduled for;
- How much time you will have to present your request and remember to ensure the amount of time works for you;
- If you have access to the same information as everyone else at the meeting, what the agenda is and that it addresses your concerns. (page 17)
It is helpful to keep a binder containing all documents and correspondence in regards to your advocacy journey. Should you ever have to go through a formal appeal process, this binder will come in handy. In some cases, you may also want to keep a log. Here, you can record the date and every contact made in the advocacy matter i.e. phone calls, emails, and meetings.
Before a meeting, establish goals and outcomes that you would like to achieve. This way, you will be able to successfully negotiate and compromise. Many advocates find it helpful to bring a photo of the individual they are advocating for. This way, everyone is reminded that there is a real person whose life will be affected by the decisions made at that meeting.
Gathering information from other families can help you decide what steps to take and how you want to go about a particular advocacy matter. By being connected to a family network or advocacy organization, you will learn from parents who have experienced exactly what you are going through. Principals, for instance, may tell you that they lack the funding or supports necessary to grant your child an inclusive education. This, however, is incorrect. In this situation, you should get the principal to agree to that statement in writing. This way, they are ultimately agreeing that your child deserves an inclusive education, but the only issue is funding. The law states that children cannot be excluded or denied support because of funding. Almost every one of these situations results in the child being included in the classroom. Advocacy groups and family networks will be able to share many more strategies and tips for ensuring that the needs of your child are met.
On another note, you should always try to be as familiar as possible with “any relevant policies, regulations, ministerial orders or legislation that governs the matter under negotiation” (page 23).
Compromise is inevitable. However, when one party is more vulnerable than the other, compromise must be approached with caution. “The interests of both parties in this instance are not equal and the compromise must first serve the interests of the vulnerable party” (page 23). It should also be noted that compromise should be approached with your vision in mind, and never with the mindset that things could be worse.
One particular compromise to avoid is surrounding segregated programs in educations. “As most systems are organized around offering segregated or group programs for children and adults with developmental disabilities, families will be more readily offered this option. To disguise the reality of these options they will often have nice names attached to them and rarely will they be describes as segregated or congregated (i.e. grouping people with disabilities together)” (page 26). These segregated options may be offered in combination with inclusive education, but this usually progresses to full-time segregation. Research has shown, additionally, that inclusive environments offer more instruction and individual attention to children with developmental disabilities, and is therefore, a better option.
Friends and Advocates
Once again, it is best to try to bring a friend or advocate with you to meetings. These people can provide support, take notes, and remind you of the points you wish to cover. Friends and advocates can also act as a witness to what is being said at the meeting.
Speak to the Right Person
Aim to meet with the person who has the authority to make the decision you require. If this cannot be arranged, then try to identify the next person in the chain of command of authority or the steps you need to take in order to meet with the individual with authority.
Listening carefully is another important aspect of meetings. Listening carefully may "give you insight into the other person’s perspective and provide strategic clue as to how you might frame your points so that you too will be heard” (page 28). If you bring a friend or advocate to the meeting, they will be able to listen to what is being said as well as watch body language. As a result, they may be able to provide you with a fresh perspective on the situation. Also, taking breaks is could be a good idea. During breaks, you can strategize or review points with your advocate.
Formal Advocacy and Appeals
Formal advocacy situations arise when experts or lawyers are involved, and families should not enter into these situations without their own lawyers or experts to support them. If you are involved in cases surrounding formal appeal or review of a decision, an advocacy association can provide you with the help you need.
Family advocacy collectively makes a difference. “The possibility of a more promising future rests entirely on the capacity of families to pursue their vision of a meaningful and inclusive life” (page 30).