Inclusion Alberta's Pocket Guide to Advocacy: A Summary
- 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).