At first, advocating for care seems like a daunting, almost impossible task. But like any unwieldy job, the trick is to break it down into manageable building blocks. I've tried to simplify the how-to's of advocating for care in a workshop that I give for caregivers called "How to Know What You Want and Get What You Need".
To begin advocating for care, it's important to understand the 'givens', or what you already have in the way of support. A tool for that analysis was part of my last post on this subject.
The next area to look at is household and family caregiving needs. These are highly personal and will vary from family to family. If you feel that in-home respite is an important need, but have never used this service before, then beginning slowly will be important. A short-term, medium-term and long-term plan will all have to be thought out. The key here is creativity and 'thinking outside the box'.
First you will want to list all the care chores that you currently carry out or manage. These could include:
Social Support in the Community
Caring for Other Family Members
Enjoying Time Together With Your Relative with disability
Paid Staff Procurement
Paid Staff Training
Paid Staff Bookkeeping
Keeping Team Up to Date
Specialized Supply/Equipment Ordering
Home Maintenance/Including Insurance taxes etc.
Assign a number beside each category that represents the number of hours per day that you spend on that area. Next, tick that category if you would like to download that chore or responsibility to someone else.
Once needs are identified, a decision is taken to begin the advocacy effort starting with one or two of the most pressing needs (or helpful forms of help).
Now, the planning begins to build an 'advocacy team'. The team might consist of a family member, a best friend and a neighbor who happens to have experience in building a small business, for example. If the need is to locate and find funding for supportive housing, for example, a more elaborate researching of the community and possible additions to the team who have specialised skills will be required. If the need is to identify a volunteer driver for shopping and medical appointments, less research into the community will likely be necessary.
Next, the team will make themselves familiar with the priority needs and they will begin to undertake a process of strategic inquiry. They might need to create a briefing note if the advocacy effort is directed at government or agency funding for housing or respite. A briefing note is simply a one page document beginning with an introduction to members of the caregiving family, followed by a statement of needs and supports as well as a brief story to illustrate why the support being requested would meet the stated need. The briefing note should also include a short list of questions for the initial information meetings, such as, "Who should I speak to? Who has responsibility for decision-making about funding?" Finally, everyone advocating for your family care will need to prepare and polish an 'elevator speech' - a talk that encapsulates quickly and convincingly why the target person or agency should give you what you need.
The strategic enquiry is really an intelligence gathering exercise into the agency you are lobbying for help. Even if it's an informal community group such as a church club that offers some help to parishioners with long-term care needs, those who know a lot about the organisation and the people in it will have a much better chance of success when they ask for help. The best way to start a strategic inquiry is to identify someone on the advocacy team who will meet with a senior staff of your target organisation for the purpose of gathering information and asking advice in how best to approach matching your family needs with the objectives of the organisation as a whole. Anyone going in cold asking for money and help may simply be turned away. But, someone asking for information and advice will likely be welcomed to begin a conversation that might lead to a helpful relationship.
Next up: how that friendly conversation in the strategic inquiry can help you craft your request and get the help you need.
*This group (not individual) workshop is available through the Advocacy School. The workshop may be purchased by a charity or support group for caregivers. The workshop is also available in the form of a three-part webinar. If you would like further information, use the contact link on the Advocacy School website. We are also developing a workshop for best practice in effective patient advocacy.