Michael Ogg’s Narrative Matters essay in the January issue of Health Affairs “powerfully illustrates the realities of the current long-term care environment,” Rep. Frank Pallone (D-NJ) said yesterday at a House Energy and Commerce Health Subcommittee hearing.  Pallone, the panel’s senior Democrat, entered the essay into the hearing record.

Ogg suffers from primary progressive multiple sclerosis, and Pallone said Ogg’s experiences demonstrate the need for the Community Living Assistance Services and Supports (CLASS) Act, which was passed last March as part of the Affordable Care Act. The CLASS Act establishes a voluntary, federally administered and consumer-financed insurance plan that will pay benefits to people who need long-term assistance with activities of daily living such as bathing, dressing, and eating.

Ogg retains only partial use of one limb, his right arm. Yet, as he describes in his Narrative Matters essay, “Running Out of Time, Money, and Independence?”, he is able to continue living independently in his home in New Jersey, near his children, with the help of personal care assistants who dress, bathe, and toilet him. But he also notes that his long-term care insurance from his former employer is running out. When those benefits are gone, Ogg will have to depend on Medicaid, and if that program’s coverage for personal care assistance proves inadequate he may be forced into a nursing home. CLASS could provide a valuable new option for people in situations like Ogg’s, although the program comes too late for Ogg himself: enrollment has not yet begun, and enrollees must pay premiums for five years and work for at least three years before they can receive benefits.

In a recent speech, Health and Human Services Secretary Kathleen Sebelius quoted extensively from Ogg’s essay in defending the need for the CLASS Act.  At yesterday’s hearing, Ogg experiences were also cited from the witness table by William Minnix, President and CEO of LeadingAge (formerly the American Association of Homes and Services for the Aging). Minnix chairs advance CLASS, a coalition of groups that support the CLASS Act.

There is general agreement that the CLASS Act is financially unsustainable in its current form, and most Republicans argue that it should be repealed. However, the Obama administration and most Democrats believe that CLASS fills an important need, and they maintain that Secretary Sebelius has the authority to modify the program to make it sustainable, which she has pledged to do.

“Narrative Matters essays are first-person accounts that put a human face on health policy issues and illustrate what is at stake for individuals as lawmakers make decisions,” said Ellen Ficklen, the editor of the Narrative Matters section of Health Affairs. “Michael Ogg’s essay doesn’t tell us how to answer the financial questions surrounding the CLASS Act.  It does, however, make clear the challenges facing Michael and the growing number of disabled Americans, and it demonstrates the incredible difference that dedicated personal care assistants — available for a sufficient number of hours each day — can make in their lives.”