By Susan Jaffe July
31, 2017
Ten years ago, a
driver ran a stop sign as Jim McIlroy rode into the intersection on his
motorcycle. Serious injuries left McIlroy paralyzed from the chest down. But,
after spending some time in a nursing home, he returned to his home near
Bethel, Maine.
McIlroy does most of
his own cooking since Maine’s Medicaid program paid for a stovetop that he
can roll his wheelchair underneath to reach the food-prep area. His new
kitchen sink has the same feature. Wheelchair-friendly wood flooring has
replaced McIlroy’s wall-to-wall carpeting.
The alterations plus a
personal care aide — all paid for by Medicaid — enable McIlroy to stay in his
house that he and his wife, who has since died, “worked really hard to own,” he
said. The arrangement also saves Medicaid roughly two-thirds of what it would
cost if he lived in a nursing home.
McIlroy depends on the
federal-state program’s growing
support of home-based care services — along with 2 million elderly or disabled
Americans who rely on them to live at home for as long as possible.
However, that crucial
help could face severe cuts if congressional Republicans eventually succeed in
their push to sharply reduce federal Medicaid funds to states.
States can choose
whether to offer Medicaid services at home, but nursing home coverage, which is
more expensive, is a required benefit. Optional benefits like home services
would likely be first to go if states face budget troubles, the Center on
Budget and Policy Priorities (CBPP) warned in an analysis in May.
Children with special
health needs, older adults and people with disabilities greatly value home- and
community-based assistance, said Sen. Susan Collins (R-Maine), who chairs the
Senate Select Committee on Aging.
“That’s why I am
deeply concerned with proposals that would significantly cut Medicaid, forcing
governors and state legislators to confront difficult budget choices, including
how to maintain these critical, but optional, services,” said Collins, one of
three Republicans whose votes early Friday helped defeat the Senate’s “skinny
repeal” measure that would have scuttled the Affordable Care Act.
While home services
are not a required part of Medicaid, they represent a large share of Medicaid
spending. Medicaid expenses for long-term care consumed a third of the Medicaid
budget nationwide in 2015, and more than half of that amount went to optional
home-based care, according to a government report. Nursing homes got the rest.
“Staying at home is so incredibly important,”
said McIlroy, 73, who grows cucumbers, peppers and tomatoes on the deck of his
house. “You can do what you want to do when you want to do it, and you don’t
have to share a room with somebody else and have your meals brought to you.”
Yet demand for home-based
services is outpacing supply. In Maryland, more than 20,000 people were on a
registry awaiting openings for Medicaid home-based services last month. About
160,000 older or disabled people across the country were waiting for home
services in 2015, according to a Kaiser Family Foundation report last year. (Kaiser Health News is
an editorially independent program of the foundation.)
Esther Ellis, who
lives outside Los Angeles, received a new mattress this year from Partners in
Care Foundation, a nonprofit that runs four of the 38 sites in California’s
Multipurpose Senior Service Program and
provides Medicaid-funded home services.
The mattress helps
relieve her back problems after surgery. Partners also provided a couch, a
microwave and an emergency call button to summon help that she wears as a
pendant around her neck.
“If it wasn’t for
them, I don’t know what I would do,” said Ellis, 79.
Home-based Medicaid
benefits and eligibility vary by state and can include:
HEALTH:
Home health and
personal care aides, a visiting nurse, psychotherapy, automatic medication
dispensers, pest control services
SAFETY:
·
Emergency call
buttons, motion detectors that alert emergency responders
·
KITCHEN, DINING:
o
Microwave ovens, air
conditioners, food processors, stabilizing forks and spoons for people with
hand tremors, automatic shut-off devices for electric stoves
·
HOME MODIFICATIONS:
§ Ramps, stair lifts and widened doorways for
wheelchair access, bathroom grab bars, automatic door openers for walk-in
showers
·
OUTDOORS:
·
Snow removal
Advocates argue that
home-based services can make a big difference for health. “It’s all well and
good to discharge people from the hospital with a list of medications to take,”
said Camille Dobson, deputy executive director of the National Association of States
United for Aging and Disabilities, which represents state departments of aging.
“But if they go home to a refrigerator that doesn’t work so that they can’t
store their medications or have no way to get to their appointments, all of
that great medical intervention goes for naught.”
Medicaid home services
usually include a visiting nurse or nurse practitioner, a home health aide or
someone to help with dressing, eating and other daily activities, light
housekeeping and transportation to doctor’s appointments. But that’s just the
beginning.
The programs also pay
for home modifications, which include minor renovations such as grab bars in
the bathroom to prevent falls and wider door frames to accommodate
wheelchairs. To overcome potentially treacherous stairs, states may
provide wheelchair ramps and some — including California and Ohio — will
install a stair glider or chairlift.
Carolyn Gilliland, 81,
has lived in her home in central Ohio’s farm country since she was 4. She
receives home-based services to help with chronic health problems through a
Medicaid managed-care plan called MyCare Ohio. It provides two weekly visits
from a nurse, a personal care aide and a chairlift to reach her second-floor
bedroom. Until it was installed in April, she couldn’t go upstairs.
“It relieves the
stress on my knees,” she said.
Home health services,
plus any appliances, electronics and other items, must be medically necessary
and part of an individual care plan. Recipients must receive Medicaid, and in
most cases must be sick enough to qualify for nursing home care.
Among them is Cynthia
Dutil, 60, who lives near Waterville, Maine. Because she has cerebral palsy,
she depends on a personal care aide for help with dressing and other daily
activities. Maine’s home-based services program also provided a small food
processor to puree her foods, a large-print keyboard for her computer and a
two-sided toothbrush.
Dutil said she’s
living life on her terms. She began to explain why she prefers that to living
in a nursing home, but stopped midsentence. “How much time do you have?”
For more information
about Medicaid home-based services, go to www.eldercare.gov or
call 1-800-677-1116.
KHN’s coverage of
end-of-life and serious illness issues is supported by The
Gordon and Betty Moore Foundation. Its coverage related to aging
& improving care of older adults is supported by The
John A. Hartford Foundation and its coverage of aging and
long-term care issues is supported by The SCAN Foundation.
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