Thursday, 14 April 2016


I wrote this article for Today's Kids in Motion Magazine and it appeared HERE. It's written for an audience of parents of children with disabilities, but the advocacy principles apply to all caregivers. 

They say it takes a village to raise a child, but in today’s climate of government austerity and private consumerism, where are all the compassionate villagers?  Is it possible for families to successfully galvanize community supports to help them raise a child with disabilities?  The answer is YES, if they borrow strategies from professional lobbyists to influence government agencies, community leaders and neighbourhood resources.

There are four things that parents of children with disabilities have in common 1) They are exhausted, 2) They are on at least one waiting list for help with family needs 3) They probably haven’t had a real break since their child was born and 4) They fear the future because they know they can’t survive the long term with the first three realities.  Most families know they should advocate for help with care at home, but they don’t know where to begin.

Parents of children with disabilities perform thousands of small tasks every day.  Each task in itself seems perfectly doable, but over time, parents can be worn down by the weight of caring and constantly seeking support.  Engaging in a coordinated advocacy effort to access help at home might just seem like one more thing to do, but it’s worth it – and you don’t have to do it alone.  In fact, a team of committed family members, friends and community members can do it with you.

The building blocks of advocacy are: ANALYZING what help you already have that is helpful, IDENTIFYING what kind of help you need, RESEARCHING the community for sources of direct help as well as people to help you advocate, CULTIVATING a champion within your target organization, and EXECUTING your request under winning conditions. Professional lobbyists use these techniques to influence government – families can use them too.
To begin advocating for care, it's important to understand the 'givens', or what you already have in the way of support.  Knowing what kinds of help are actually helpful to your family is the first step in deciding what you need. A friend who takes ALL your children for a sleepover is one kind of informal support that may be truly helpful.  A weekend half-day respite programme for your special needs child (formal support) might be too far away, making it more bother than it’s worth.  Begin by assessing what kind of assistance you have for the whole family currently and decide what kinds of help are helpful for YOU. 

Next, make a list of daily tasks that you carry out for your family’s care and wellbeing, putting a star beside those tasks you would assign to an outside person, in an ideal world.  Some families find a weekend away most rejuvenating, while others may seek after-school or dinnertime help.  If a child with disabilities is often ill, parents may wish to spend time at the hospital bedside.  That means assistance with other children and pets at home.

Parenting a child with disabilities is an isolating experience.  So it’s important to survey the local community in detail - this means Googling your neighbourhood or city.  There might be a community group, church committee, high school club or neighbour who could provide support.  And that support could be in the form of helping to create a strong advocacy ‘team’.  Local community centres have a mandate to support healthy families and most high school students must complete volunteer hours in order to graduate.  Remember, you are searching for both places that might offer programming AND people who could help you advocate. 

At this stage, an advocacy goal for home help should be formed.  It might be, “one weekend per month respite for my child with disabilities”.  Or it could be, “a teenager to help with homework after school so that I can make dinner.”  Families of older children may be seeking to plan future supported housing arrangements.  Whatever the advocacy goal, a group of family and skilled friends will be required to pull together as a team to locate resources and advocate for solutions.

Once an agency or resource organization has been identified as an advocacy target, an information process called a ‘strategic inquiry’ begins.  This process involves seeking advice, developing a deep understanding of ‘who’s who’ in the organization and building a relationship with key players.  The objective of the strategic inquiry is developing a clear understanding their objectives.  For example, if respite means having someone with nursing skills for your child, the advocacy target may be the local medical college.  A cold call to the office of the Director to ask about getting help into your home might not be successful.  But, an information gathering appointment (with you or someone who has agreed to help you advocate) will very likely reveal some strategic next steps.  An appointment to ask advice could be the first step in cultivating a senior official to be ‘your champion’ within the target organization.  He or she will represent your family’s interests when budgets are being decided and programming decisions are made.

Nominate someone on your team to be the record keeper for your advocacy effort.  Their job will be to organize copies of important background documents such as medical reports, meeting notes and contact details for all concerned.  Your team secretary will also produce a document called a ‘briefing note’ – that’s just a fancy name for a handy, bullet-point advocacy tool.  The briefing note should include a few sentences introducing your child with disabilities and the key supporters in his or her life, such as family members, special friends and anyone else who is active in supporting your child.  A list of needs and supports in point form is next, followed by a brief story or anecdote to illustrate your situation and needs.  Finally, there’s a list of questions with lots of space for note taking during meetings with your potential sources of assistance.  Sample questions might be, “What advice do you have for our family?  How have others dealt with similar situations?  Who else can I speak with about our request?  What can we do for follow-up?”  After the meeting, don’t forget to drop an email to say thank you – in advocacy, a polite expression of gratitude is worth its weight in gold.

Good practice in advocacy will not guarantee outcomes, but it will deliver greater opportunities for success.  And that’s vital, because going without help at home over the long term is not a healthy future plan for any family.

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