Staff from our organization, Family Caregiver Alliance, speak with family caregivers every day through our national information and referral hotline. These caregivers are often facing enormous financial difficulties. For example, adult children who are caring for parents with Alzheimer’s, especially in its advanced stages, find that keeping a job and being a caregiver is nearly impossible. The same goes for caregivers of loved ones with multiple conditions, those who are undergoing treatment like chemotherapy or those who simply needs assistance with multiple daily activities like eating, dressing and showering.
In addition to reduced income, many caregivers also take on more expenses, including co-pays, buying medical equipment or paying for supportive services like respite or direct care workers. Professor Richard Kaplan captured it best in his analysis of CLASS when he said that while family caregivers provide care “without charge,” this is not the same as “without cost.”
At a Congressional hearing held in March on the topic of CLASS, a witness shared the story of his co-worker to demonstrate how the current system of long-term supports (provided through Medicaid) can sometimes fall flat because of increased demand and tightened state budgets. One of his co-workers received a letter from the state of New Jersey addressed to her mom. The letter informed her that she had moved to #176 on the waiting list for a Medicaid Home and Community-Based Service. Unfortunately, she received the letter a week after her mom passed away. This woman’s situation is not an isolated incident – the Kaiser Commission on Medicaid and the Uninsured noted in a February report that there were 107,653 people on waiting lists for Medicaid Aged and Aged/Disabled Waivers in 2009, with an average wait time of six months.
Another witness, Anthony J. “Tony” Young, discussed why the CLASS program would be helpful for him and his family, as well as other families who find themselves unexpectedly in need of long-term care. At the age of 18 while body surfing, his C-4 vertebra was crunched, and in his own words, he went from total independence to near total dependence. After rehabilitation, his family served as his caregivers, and he was eventually able to receive some supportive services as well. He is now employed, and he and his wife currently spend $17,000 annually to pay for 18 hours of direct care assistance each week. These 18 hours of assistance don’t provide for all of his needs, so his wife covers the rest.
While the Administration on Aging (AOA) is still in the program design phase for CLASS, there are some general parameters from the Affordable Care Act legislation to guide them. If a person has paid into the program for five years and then becomes unable to perform “Activities of Daily Living” (ADLs), he or she would be eligible to receive a daily cash benefit of at least $50. Perhaps most importantly, the beneficiary would have the ability to decide how this money would be spent, including compensating a family member or friend for providing care. One of the most frequently asked questions by caregivers who call our organization is whether they can be compensated for caring for a loved one. Outside of Medicaid Waivers in some states, the answer right now is “no,” but could become “yes” with CLASS.
The “consumer direction” component of CLASS has been well received in Medicaid Waiver programs and could also allow more people to remain in their homes. This option is not only strongly preferred by Americans, but is also far more cost-efficient than institutional care. As an example, services provided through South Carolina’s Medicaid Waiver program, Community Choices, cost $32 a day, as compared to $127 per day for a nursing home.
For CLASS to succeed, it will need to be marketed broadly (Geico’s strategy of “saturation advertising” would be a good model) to attract a broad range of participants. AOA will face a difficult task, because Americans consistently report in surveys that they don’t think they’ll need long-term care (actually, studies show that more than two-thirds will at some point) and many also mistakenly believe that Medicare will pay for long-term care. Through this marketing campaign, Americans will need to face the fact that we will likely need long-term care at some point in our lives, it isn’t cheap and even with programs like Medicaid or CLASS, we need to start talking about this issue with our loved ones now.
CLASS has the potential to fundamentally improve our country’s long-term care infrastructure while also helping to facilitate planning and conversations that we should be having about long-term care, especially with 10,000 baby boomers turning 65 every day for the next 19 years. While not a silver bullet, CLASS is a giant leap forward for our country’s long-term care system, supporting family caregivers and addressing some of the financial challenges brought on by caregiving.
If you are interested in learning more about the CLASS program, FCA has gathered research, reports, and media coverage on our website.
This blog posting was guest-written by Sean Coffey & Tyler Stanley, J.D., Policy Specialists at the National Center on Caregiving at Family Caregiver Alliance for the Disability.blog, part of Disablity.gov that is managed by the U.S. Department of Labor’s Office of Disability Employment Policy (ODEP), in partnership with 21 other federal agencies.)