"Long-term care."

These are probably the three scariest words in aging. They scare people more than death itself because of the loss of capability and independence they imply. You come to need long-term care because you are unable to fully take care of yourself (e.g., get dressed, prepare meals, or use the toilet). In our culture, these are losses that we choose not to face, despite being common late in life and possible at any age.

They are also scary words because the long-term care services available are often not good quality and not what we would want. Many people will tell you that they would rather die than go to a nursing home. Unfortunately, it isn't an either/or choice. You get to go to a nursing home (about 40% of us will spend time there) AND you get to die. Home-based models of care are expanding, but are often hard to get into and are suddenly uncertain in the prevailing state budget situations. The Foundation’s grantee PHI is working to advance “Quality Care through Quality Jobs” on behalf of older and younger disabled people, as well as the paraprofessional caregivers who are essential to their lives.

Finally, while many people live in the bliss of ignorance, more and more people fear the words “Long-Term Care” because of the expense and financial hardship they represent. State budget woes matter in long-term care because it is NOT covered by Medicare, the federal health insurance program. With prices for home care, assisted living, or a nursing home ranging from $15,000 to $60,000 per year, these are expenses that few have prepared for at all and almost no one can afford for very long.

So, after you have used up any savings on long-term care (in home or in a facility) and your needs are beyond what your family can provide, and you have used up any private long-term care insurance (held by only 7% of seniors), finally you will meet the poverty level asset tests to be eligible for Medicaid, the state-federal health (& Long-Term Care) "insurance" program for the poor, which becomes the payer of last resort. While this role of Medicaid programs is much less well understood by the general public than its role in providing services to women and children in poverty, some 40% of overall Medicaid spending is already on long-term care for older adults.

For all of these reasons, policy makers fear long-term care as well. There is little political upside in providing a service to constituents that they don’t know that they need, don’t like when they get, and is very expensive to the treasury or to participants.

That is why Title VIII of the Patient Protection and Affordable Care Act, the “CLASS Act” (Community Living Assistance Services and Supports) was such an amazing breakthrough. Essentially the title calls for the creation of a government administered but voluntary long-term care insurance program that would pay a cash benefit to people who meet disability criteria and have paid into the program for enough time in advance.

Last week, according to Advance CLASS , an advocacy organization funded by our good friends at the SCAN Foundation, responsibility for implementing and administering the CLASS program was given to Assistant Secretary for Aging, Kathy Greenlee, and housed at the Administration on Aging. This video from last year reflects Secretary Greenlee's pragmatic understanding of aging and long-term care. We are lucky to have her working on this new program. Getting CLASS going will not be easy, given the complex regulations that will need to be developed and the difficult marketing problem of convincing people to participate. But it has the potential to create a long-term care system that will protect the dignity and independence of Americans who need assistance.