Articles from an Advocate

Suzanne Mintz, president and co-founder of the National Family Caregivers Association wrote the following articles below because it is critically important that family caregivers understand that what happens on Capitol Hill, and in their state houses, directly impacts what happens in their day-to-day lives, even in their bedrooms and bathrooms.

Medicare does not cover the cost of incontinent products. “Adult diapers” can cost $1,800 or so a year. That has a real impact on your pocket book

The Family and Medical Leave Act provides 12 weeks of unpaid leave for employees in companies with more than 50 employees so they can care for themselves or a loved one. California passed a law that provides for paid leave. Knowing your job and your benefits are secure – that’s major.

A few states have a lifespan respite care program because families advocated for them. At the end of 2006 Congress passed a bill authorizing the creation of a national lifespan respite care program. The problem is Congress didn’t appropriate any money for it and so the fight still goes on. Given that “time for myself” is what caregivers clamor for, this is a big deal. It took over four years to pass the legislation. Let’s hope it won't take four years to get it funded. Does this impact you – you bet it does.

The article series is titled: It Doesn’t Have to Be This Hard. There are things we can do to make our lives easier. Some of them are things we each need to do individually, such as asking for help, and protecting our health, but some we need to do collectively - and moving policy is one of them. As you read the articles below you will learn more about what Medicare doesn’t cover that impacts our lives. You’ll learn that the number and quality of public programs differs by state. You’ll read about two people who have made a difference, be reminded that even when laws exist they aren’t always obeyed and you’ll read one woman’s story about her interaction with doctors and hospitals that almost defies belief.

Sometimes Legislation and Regulation Isn’t Enough (PDF)
The Healthcare Nightmare (PDF)
Family Caregivers Invisible to Medicare (PDF)
The Power of One to Organize Many (PDF)
Do You Live in a Family Caregiver Friendly State? (PDF)
How One Family Caregiver Answered the Call (PDF)
Family Caregiver Friendly Legislation (PDF)

If these articles convince you, or even just peek your interest, that it is important for family caregivers to speak up for their rights click here to sign up for our monthly E-letter. It will keep you up to date and tell you about new resources we’ve located - and when actions need to be taken we’ll send you an alert.

Family caregiving is hard - will always be hard - but it doesn't have to be as hard as it is!