High Hopes for the Long-Term Care Commission

By Michelle Seitzer / Posted on 08 March 2013

In this guest post, author and caregiver Martha Stettinius shares her thoughts about the newly formed bipartisan Long-Term Care Commission.Today’s guest post is from Martha Stettinius, the author of the book “Inside the Dementia Epidemic: A Daughter’s Memoir.” Learn more about Martha below the post.

Congress has formed a new bipartisan Long-Term Care Commission to figure out how our nation can provide more affordable and accessible long-term care. Once Obama makes his appointments, the Commission will have six months to make their recommendations.

As a former caregiver for my mother, I’m hoping against hope that the Commission will step up and be brave — even idealistic. For eight years I cared for mom at home, in assisted living, a rehab center, a “memory care” facility, and a nursing home. Mom had vascular dementia and probable Alzheimer’s disease, and passed away in December from congestive heart failure utterly impoverished, on Medicaid for the last two years of her life. As a divorced woman and a retired teacher, she had pinched every penny for years, but quickly burned through her savings paying for long-term care.

As it stands, if families do not have private long-term care insurance (and only 3% of Americans do), they must pay out of their pockets for help with daily care such as cooking, bathing, and dressing. Medicare does not pay for long-term care, and Medicaid will pay for long-term care only if you spend down all of your assets. Most people will need long-term care at some point, but few of us can afford the astronomical cost.

I’m hoping that the Long-Term Care Commission will be true leaders and re-visit the idea of public long-term care insurance.

Our one attempt at a public long-term care insurance program — the CLASS Act of 2010 — failed to be implemented because it could not be proven to be sustainable. Why was it unsustainable? Because it was voluntary. Not enough young, healthy people were expected to enroll and keep the program afloat.

So while we’re back where we started, the need has not gone away. At least seventy percent of people over age 65 need chronic long-term care services that are not covered by Medicare. More than fifty percent will need help for at least a year. One out of five elders will need assistance for five years or more. Women are twice as likely as men to need care for more than five years. Forty percent of people receiving chronic long-term care are between the ages of 18 and 64, often because of sudden injury or illness (such as a head injury or stroke).

With all of this need, I hope the Commission will look for inspiration to European public long-term care insurance programs (and not worry about the label of socialism). In Germany, for example, adults have a small deduction taken out of their paychecks for their entire working lives (like Medicare and Social Security), then enjoy a variety of long-term care options. German long-term care insurance covers both home and institutional care and benefits can be received in cash. According to Howard Gleckman in his book Caring for Our Parents, the funds from these premiums are held and invested not by the German government, which might be tempted to spend them, as our government would, but by a quasi-private company. The premium deductions may need to double by 2040 to cover costs, but overall the system works well, and ninety percent of Germans receiving benefits report that they are satisfied.

If all Americans participated in a public, long-term care insurance program, the federal government and the states would be released from the catastrophic burden of Medicaid spending for elder care. Medicaid could focus again on its original, and much less costly, intention from the 1960s—to aid poor women and children.

As we all live longer, and as boomers enter late old age, public long-term care insurance could mean the difference between government solvency and implosion.

Be brave, dear Long-Term Care Commission. The time is now.

Martha Stettinius is a volunteer representative for New York State for the Caregiver Action Network (formerly the National Family Caregivers Association) and an expert in dementia care for the website eCareDiary. She works as an editor, and earned a master’s in English Education from Teachers College, Columbia University. “Inside the Dementia Epidemic: A Daughter’s Memoir” is available through all major online book retailers as a hardcover, paperback and e-book. Martha can be contacted through her website and blog, by email at martha@insidedementia.com, on the book’s Facebook page, or on Twitter and LinkedIn.




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