How to Advocate for Care: Part 1

Advocating for care is a complicated task.  The job of caregiving does not discriminate on the basis of family income, race, education or employment status.  Anyone, anytime can find themselves suddenly thrust into the position of giving care to a loved one.  And if the care needs are high, the caregiver will quickly become exhausted and discouraged.  That's when help is needed.  When I needed help, I didn't always know how to get it.  Over the years, I have reflected on which strategies work and those that don't.  I've also looked carefully at best practice political lobbying techniques to see how those might help families get support quickly and efficiently.

Through a social enterprise called, "The Advocacy School", I give a care advocacy workshop for families titled "How to Know What you Want and Get What You Need".  The workshop starts off by asking families to look at what sorts of help and support they already have in place and whether that help is actually helpful.  It's important to start with an analysis of 'the givens' and sometimes, families realize that supports they have been fighting for are not actually what they need or want.  An Alzheimer's day program that only runs in the mornings may not suit an elderly person who sleeps till ten everyday, meaning that mornings are the only respite for the caregiver spouse.  Sometimes the meagre offers of support from local or state governments are either unsuitable, or just not worth the paperwork that's required for eligibility.   A casserole delivered by a neighbor every Friday afternoon might be the most helpful assistance that a family receives.

In the workshop, the first step is analysing families' current help and support.  That's followed by an analysis of neighorhood supports (including possible supports).  Next, there's a needs analysis and a matching up of needs to supports in order to identify one or two 'asks' or requests for support.  Finally, families learn the ABC's of strategic enquiry and how to write a briefing note in order to 'get what they need'.  In the live workshop, participants can try out their strategies through role play.

Here is the handout that I use in my workshop.  This handout was used for families of adult children with disabilities, so if there are categories that don't apply, try to think of a relevant replacement support or service that can be slotted in.  'Direct Funding' refers to any cash payment that families receive through agencies or governments.  'ODSP' refers to the disability pension benefits in my home province of Ontario in Canada.  'RDSP' refers to the Registered Canadian Disability Savings Plan.  If you do not live in Canada, perhaps you have another form of savings plan or insurance.

Appendix A – Inventory of HELP CURRENTLY RECEIVED

CHECK EACH TYPE OF ASSISTANCE RECEIVED.  INDICATE 1-3 THE DEGREE OF ACTUAL HELPFULNESS OF EACH FORM OF ASSISTANCE

	1. NOT AT ALL HELPFUL	2. SOMEWHAT HELPFUL	3. ESSENTIAL AND VERY HELPFUL
FUNDING:
DIRECT FUNDING
EMPLOYMENT SUPPORT FUNDING
RESPITE FUNDING
ODSP
RDSP AND/OR TRUST
OTHER
COMMUNITY SUPPORT:
SUPPORTED EMPLOYMENT
DAY PROGRAMME
COMMUNITY GROUPS (LEISURE)
CHURCH
HOUSING:
GROUP HOME
FAMILY HOME HELP (DESCRIBE)
SHARED CARE
RESPITE
FAMILY/FRIENDS:
FINANCIAL ASSISTANCE FROM FAMILY MEMBER(S)
CARE ASSISTANCE FROM FAMILY
OTHER ASSISTANCE FROM FAMILY (DESCRIBE)
NEIGHBOUR/OTHERS’ ASSISTANCE

The next post will offer tips on discerning family needs for caregiving assistance and possible sources of help in the wider neighborhood.

*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.