Hillsboro, Ore. — As states face severe budget shortfalls, many have cut home-care services for the elderly or the disabled, programs that have been shown to save states money in the long run because they keep people out of nursing homes.
Since the start of the recession, at least 25 states and the District of Columbia have curtailed programs that include meal deliveries, housekeeping aid and assistance for family caregivers, according to the Center on Budget and Policy Priorities, a research organization. That threatens to reverse a long-term trend of enabling people to stay in their homes longer.
For Afton England, who lives in a trailer home here, the news came in a letter last week: Oregon, facing a $577 million deficit, was cutting home aides to more than 4,500 low-income residents, including her. England, 65, has diabetes, spinal stenosis, degenerative disc disease, arthritis and other health problems that prevent her from walking or standing for more than a few minutes at a time.
Through a state program, she has received 45 hours of assistance a month to help her bathe, prepare meals, clean her house and shop. The program had helped make Oregon a model for helping older and disabled people remain in their homes.
But state legislators say home care is a service the state can no longer afford. Cuts affecting an additional 10,500 people are scheduled for Oct. 1.
"They yanked the rug out from underneath us," said England, who lives on $802 a month from Social Security. "I’m scared. I’m petrified. I can’t function on my own. I took care of my husband for eight years. Already I’ve given up many of my freedoms. Now they’ve taken our dignity. I’d like them to try living in my body for a week."
Her case manager, Brandi Lemke, shook her head.
"This is not saving any money," she said.
Lemke said she feared that England would "end up in the hospital because of the diabetes" and be in assisted living by the end of the year.
"If she takes a fall," Lemke said, "she may require more than assisted living can handle."
Nursing homes here cost the state an average of $5,900 a month; home and community-based services cost $1,500 a month.
Other states have made similar cuts:
— Florida placed 69,000 people on waiting lists for home or community services last year, and more than 5,700 of them ended up in Medicaid nursing homes.
— Alabama cut housekeeping services — useful for people who can no longer do some cleaning tasks — for more than 1,000 elderly residents.
— Arizona sliced independent living supports and respite programs for family caregivers.
— Kansas, with a $131 million shortfall, will cut independent-living services for 2,800 people with disabilities in the next year.
— In Illinois, providers of Meals on Wheels have stopped adding clients because the state was not reimbursing them.
"I’m not getting a cost-of-living adjustment, and now I’m not getting food," said Joyce Plennert, 83, who is on a waiting list for Meals on Wheels in Palatine, Ill. "Now I’m worried my home services will be cut. Without that, I’d be in a nursing home, if I could find one with room."
Colorado, Mississippi, Missouri, Nevada, New Jersey, New York and Texas have all made cuts or frozen spending at a time when the elderly population — and the need for services — is growing.
In California, which faces a budget shortfall of $19.1 billion for fiscal 2011, Gov. Arnold Schwarzenegger’s office proposed eliminating adult day health care centers that serve 45,000 people and in-home supportive services that help more than 400,000 elderly, disabled or blind residents. The Legislature rejected these cuts but has not yet produced an alternative budget.
The state already cut Alzheimer’s day care centers and assistance for caregivers.
Because Medicaid regulations require states to provide nursing home care to receive federal Medicaid money, legislators often have more leeway to cut from home services. Advocates for the elderly and the disabled worry that these cuts are just the beginning, because state ledgers tend to recover more slowly than the national economy.
"The situation is grim, and it’s safe to say that present trends are expected to continue," said JoAnn Lamphere, director of state government relations for health and long-term care for AARP. "Nearly every state has proposed cuts of some sort to Medicaid. Some might seem small, but it’s death by a thousand slashes."
The cuts in Oregon have been particularly painful to people who work with the elderly, because for more than three decades the state has been a leader in rebalancing long-term care away from nursing facilities and toward the home. The cuts here indicate how fragile these services can be against states’ need to reduce spending.
"I’m seeing in a matter of months 30 years of work go down the drain," said Donald Bruland, the director of senior and disability services for the Rogue Valley Council of Governments.
The state spends more than half its Medicaid long-term-care dollars on home care and has a separate $13 million program for people who do not qualify for Medicaid; on average, states spend just 25 percent of their long-term-care budgets on home and community-based care.
Bruce Goldberg, director of Oregon’s Department of Human Services, said the agency did not have an estimate for how many of the people losing home care would end up in assisted-living facilities or in nursing homes — or, if they did, how the state would pay for them.
"We’re in new territory," Goldberg said. "Long-term care is a cobbled-together system with many holes, and they just got deeper."
Last week, the Oregon Legislature’s emergency board scheduled a session for Thursday to reconsider some of the cuts.
In Portland, Ken Poe, 66, requires assistance because of polio, which he got when he was 9. He has little muscle strength and requires oxygen constantly. The state provides 20 hours of care a month in his home.
Poe, a former pilot and flight instructor, lives as independently as he can, he said — he still drives, although he needs help getting to and from his car — but said he could not afford to pay his aides on the $1,300 a month he gets from Social Security. He often borrows money from a home credit line at the end of the month. Because of severe osteoporosis, he worries about falling in the shower without an aide.
"There are times when I’m struggling to get to the kitchen when I wonder how much longer I can do this," he said. "But this is my comfort zone. It may look like a mess" — he gestured to cardboard boxes filling the living room — "but the boxes are my system for getting around. Moving to an assisted-living facility would bring on a depression."
For states, having to cut the Medicaid programs is a double loss, because they come with matching dollars from the federal government. This creates state jobs and much-needed revenue.
Without these, said James A. Davis, a gerontologist at Marylhurst University and executive director of United Seniors of Oregon, "it really is a death spiral."
"So often the programs to go are the early interventions that save money and keep people healthy," Davis said. "That comes back to bite you."