Providing care and support for older adults is expensive, drains time and energy of family caregivers, and can make family lives chaotic. The repeal of the CLASS Act leaves the United States with no national long term care services and support plan for the millions of older adults who need it now, and the millions more who will need it in the next 20 to 30 years.
As part of last year’s “fiscal cliff” bill, Congress established a Commission on Long-Term Care to investigate options and make recommendations on how our nation can address this growing challenge. The 15-member panel is working under tight deadlines to propose solutions that offer cost-effective health and social services to seniors, and support their caregivers, who are frequently caught between raising their own families, work and caring for aging relatives.
Lynn Feinberg, senior strategic policy adviser for AARP’s Public Policy Institute, testified before the commission on the urgent need for family caregiver supports. “What I was struck with the most at this most recent hearing, was virtually everyone who testified spoke about the importance of family support in long term services and support,” she said. “Everyone was recognizing this was not just an aging issue, or not just a woman’s issue, but it’s a family issue that really touches everyone and increasingly affects more people and will affect most everyone in the future.”
Medicare only pays for up to 100 days of nursing home care per stay, and only if a person has been hospitalized first for at least three days and needs skilled nursing care after discharge. Home health care is reimbursed for a limited time when skilled nursing care is medically necessary – it does not cover daily living care like bathing, dressing, meal preparation, or similar activities as a stand-alone service. Medicaid, which covers 60 percent of all long term nursing home care, generally requires someone’s finances to be at or near the federal poverty level to qualify. That puts many older adults and families in a real bind.
A new survey from the National Council on Aging shows that 4 in 10 seniors want to maintain ties to their community, family and friends. That frequently means a spouse or adult child – still primarily daughters or daughters-in-law, according to Feinberg – must split their time and energy between their own family, a job, and caring for an older adult. The drain on family finances can leave caregivers wondering what their own future might hold. “More women who are in the workforce are increasingly in many families the primary breadwinner for that family. so it’s critically important that they can put money away for their own retirement and continue working to have QOL for everyone in their own household,” she said.
There are few available support services for family caregivers, leaving them to struggle with issues like time off from work to accompany a loved one to medical appointments, constantly monitoring an older adult with Alzheimer’s, and doing nursing tasks like wound care, with little or no formal training. Additionally, family caregivers administer an average of five to nine medications for an older relative or friend, according to Feinberg. “How do you do that, and do that well, when you’re trying to hold down a job outside the home?”
In her testimony before the commission, Feinberg stressed the need to fund LTSS for caregivers, as well as for those they care for. It might be paying family caregivers to help offset income that may be lost on the job. Or providing other support services like respite care, that give families a break from 24/7 care. She also encouraged incentives for health care and social service professionals to improve communication with the family member and provide them with the information so that they can make the best decisions for their loved ones.
“Depression and anxiety are huge issues for family caregivers who are caring for older adults, especially those that are caring for those with dementing illnesses,” Feinberg testified. “There are some experts that not only now see family caregivers as a vulnerable group themselves but who see family caregiving as a public health concern because of the adverse impacts on mental health, and also the physical health of caregivers.”
Families have always been the most important supports to frail older adults in the United States. As caregivers shoulder more of the caregiving burden for older relatives and friends, more support is needed to help them provide provide better care for a loved one, while still taking care of their own needs, she told the Commission.
The Commission’s term wraps up in September. While the final recommendations are still anyone’s guess, Feinberg is optimistic about getting Congress to approve additional funding for caregiver support programs. “Many of them are going through this with their own families,” she said. “It’s becoming the new normal.”
The NCOA released its own set of recommendations last week for the commission, including:
- Establish a voluntary, national long-term care insurance program
- Establish online exchanges to simplify the market and assist individuals and employers
- Require mid-size and large employers to offer long-term care insurance options that meet key standard
- Remove barriers for individuals to acquire and access personal assets to pay for long-term services and supports needs
- A number of improvements to the Medicaid program
- Establish a refundable caregiver tax credit to assist informal caregivers
- Provide financial incentives to states to establish matching services registries to assist individuals with finding and hiring qualified direct care workers.