Wikipedia defines advocacy as "the act of arguing on behalf of a
particular issue, idea, or person." For parents of children
with special needs, advocacy is essential in securing necessary
services. When parents first find out their child has special
needs, most are unprepared for the amount of work that lays before
them. This was certainly true in my case. A lot of
mistakes can be made and a great deal of time wasted when you are
trying to find your way through the advocacy maze.
Let me share a bit of what I have learned over the years about
advocacy:
Advocacy happens on two levels: on an individual level,
and on a group level. Parents advocate as individuals
when, for example, they seek specialized health or educational
services for their child.
Eventually, most parents realize the enormity of the task they
face in searching out and securing appropriate services and
resources while simultaneously raising a high needs child and
trying to have some semblance of a normal life. It is then
that many seek out support from groups such as HOPE or Parents for
Children's Mental Health, where they find information and support
and are able to share their parenting challenges and
experiences. In doing so, they become part of a larger group
advocating for all children and forming networks on a provincial,
national, or even international scale.
Whether advocating on an individual or group basis, there are
some steps to follow:
- The first step is to clearly define the issue and the
goal. For example, the issue might be an undiagnosed learning
disability, and the goal would be to get an appropriate diagnosis
and special education services.
- The second step is to educate yourself as thoroughly as
possible on the issue. Read everything you can, ask for
referrals to the appropriate health care/social service/educational
service providers and listen to what they have to say.
Attend all appointments and follow ups as necessary.
Talk to other parents about their experiences and learn as much as
you can about your child's particular challenges.
- In addition to knowledge of the issues, it is necessary to have
knowledge of the process. This is an area where many
parents find themselves at a disadvantage and where it is most
helpful to find parent groups or other advocates to guide
them. Each organization has different rules and
procedures. These can be a minefield for parents and those
who have already "been there, done that" can be a great source of
information and moral support.
- The next step is to gather and organize your resources.
This includes supporting documentation, such as school and health
records, conference notes, consultations, publicly available legal
information (such as regulations on special education, available at
Ministry websites), and so on . These are needed to make and
bolster your argument. Call in additional supports such as
friends and family, for childcare, respite, etc.
- Next, set up and implement a plan -- decide what meetings
need to be set up, who should be there, and make sure you
know what you intend to say. Write everything down. If
appropriate, draw up an agenda and distribute it in advance to all
concerned to make sure things stay focused. When in a
meeting, don't let yourself be sidetracked or drawn into off topic
discussions. Bring someone along to take notes and make sure
everyone gets a copy of them after the meeting. Make sure a
timeframe is agreed upon for follow up or future action before
leaving the meeting.
- Keep detailed records, and be sure to follow up on any
commitments made. If you hit roadblocks, work on solving
these, and continue up the ladder of authority if necessary.
Try to avoid confrontation, avoid emotional outbursts at all costs,
and stick to the issues. This can take enormous self
restraint, especially when it involves your child, but is essential
to retaining your credibility.
- Lastly, don't give up. Change takes time, and progress
can be slow. If it becomes obvious that your plan is not
working, re-evaluate and fine tune, or, if necessary, draft a new
plan. Solutions often include compromises, so decide in
advance what your bottom line is and stick to it.
