by Jamie Talan
Kathleen Torelli was
59 years old when her
husband and children
began noticing she was
repeating herself in the
space of a few minutes.
She had worked herself up to
management in a bank’s mortgage
division and now this determined
woman was shrinking into herself.
She was growing quieter by the day.
She forgot to pay bills. She couldn’t
keep on task at work. A family
doctor said she was depressed, but
no medicines lifted her up and out
of her sofa. She spoke only when
nudged to interact. The medicines
didn’t work. The diagnosis didn’t fit.
Finally, her husband brought her
to a neurologist who asked her
to complete the battery of tests
used to point in the direction of
Alzheimer’s. That was his suspicion
after listening to her story. He put
her on the standard therapies —
Aricept and Namenda — and every
three months the neurologist would
repeat the cognitive tests. Sadly, he
was right because Kathleen Torelli
soon forgot what season it was
and whether she had just taken an
elevator to get to her appointment.
Then, whatever was ripping through her brain cells
accelerated its course. She became agitated and angry.
She screamed at her reflection, wherever she was. Her
words no longer made sense. Her family took down
the mirrors and the screaming continued. By 65, she
no longer remembered how to use a fork. Walking up
stairs was an exercise in itself. Her family would find
her on the toilet fully clothed. She resisted showers.
She fell. And despite the round-the-clock care of her
husband and grown children, regardless of the fact that
her brain was sick, Kathleen did not qualify for acute
home medical care under her Medicare policy. One after
another, employees of the federal insurance policy said
that it was not a medical necessity.
The neurologist did what he could to quell her angry
outbursts. The day after her husband mashed up an
anti-psychotic into her pureed food, she leaned to one
side like a felled tree and her armed curled like a broken
branch. Her husband thought maybe she had a stroke
and called an ambulance. This turn of events — the
emergency room doctors took her off all medications
and she was left in a bed for 36-hours waiting for a brain
scan that finally, unsurprisingly, showed no evidence of
a stroke — was the beginning of the journey through
a maze of mirrors as her family navigated the insurance
world to get her the help she so desperately needed.
Since this is a story about the minefield of the insurance
world, telling the stories of patients and their families and
opening the back door to this complex system should help
families begin planning early enough to save the stress and
pain of a system that is not intuitive at all. But there are
lots of people out there — professionals at organizations
like the Alzheimer’s Association and social services and
legal agencies who work with families every day. Their
insights into this process will prove invaluable as you begin
to think about what your needs are and perhaps what you
might not be able to see coming down the road as your
disease or your family member progresses.
Kathleen’s family understood they no longer had a
choice to keep her home. She would try to eat anything
in her reach. Napkins. A rose. Towels. Her anger was still hot like burned coal. Memories of her family
seemed lost. A neurologist recommended she be sent to
a psychiatric hospital so doctors could safely figure out
the mix of medicine that might help. Six weeks later,
the medical bill was reaching $100,000 and she was no
better. And now, because she had spent the better part of
the day and night in bed, Kathleen could no longer walk.
Social workers at the psychiatric hospital told the family
she needed a nursing home. But when the family began
visiting facilities one of the first questions was whether
Kathleen had Medicaid. If not, they said, the family was
looking at paying around $12,000 a month. While people
who pay taxes are entitled to Medicare at 65, this federal
insurance plan covers a lot of medical care but does not
reimburse for long-term nursing care. Medicaid, on the
other hand, is a program for people who don’t make
enough money to pay for medical care and this system
also has provisions in place for long-term care. There is
a complicated formula and people have to meet specific
financial requirements or have high enough medical bills
that could not possibly be paid for with their savings.
One of Kathleen’s daughters was handed the name of a
Medicaid consultant at Senior Solutions in Jericho, Long
Island. To qualify for an institutional Medicaid benefit,
the family was required to make copies of every monthly
banking statement for the last five years and provide
detailed financial information on their home mortgage,
pension and life insurance policies. That Kathleen has
a husband adds a significant layer of complexity, as you
will see. While the family was maneuvering through the
obstacle course of Medicaid applications, they still had to
find a nursing home that would take her. Now, Kathleen
was even more agitated. Dementia and aggression
— and the stint on a psych ward — were a tough sell
for nursing homes. A dozen places turned her down.
They were told it was hard placing her directly from a
psychiatric hospital but if they brought her home, even
for a few days, finding a bed in a nursing home would be
downright impossible.
Even with the help of a consultant, Louis Torelli,
Kathleen’s husband, would come face to face with
a federal formula that basically excavated the family
finances. To qualify for Medicaid meant the couple
needed to get their life savings down below $109,000. If
an Alzheimer’s patient no longer has a living spouse, the
family savings takes an even bigger hit.
Sidney Schmukler is 96-years-old
and has survived three heart attacks,
triple bypass and angioplasty.
Sidney and his wife Rose moved from New York to
Florida. But it was only when his mind started slipping
in 2007 that his children decided their parents should
move back to New York. Two years later, his wife died
and their children decided to apply for Medicaid home
care so they could pay for an aide to assist him with daily
activities. Betty Shaffer, Sidney’s daughter, followed the
instructions of the Community Medicaid application
and the government insurance program sent a nurse to
the home. The visit was to determine the needs of the
patient to see whether he would qualify for Medicaid
assistance.
Sid told the nurse he did not like to shower, that the
water felt too cold. Then, the nurse took an alternative
course and started asking him whether he was afraid
because there were snakes in the shower. “It was bizarre,”
Betty recalled. The siblings listened but stopped trying
to make a case for their father because they did not want
to antagonize her. A few weeks later, they heard their
father did fit the profile for home care assistance but he
was denied because of a $25,000 insurance policy. This
was a Veteran’s insurance policy he received following his
service in World War II.
Sid’s grown children pooled family resources to pay
the $1,000 weekly cost of part-time help at home. He
cashed in his insurance policy and the family waited
out the 30-day window and reapplied for Community
Medicaid coverage. But it was within this waiting
period in April 2010 that Sid was hospitalized with an
infection in the tissue surrounding his pacemaker. His
cognitive problems were getting worse by the day. The
family decided he was too ill to be at home and applied
for a different Medicaid program, specific for long-term
nursing home care. This time, they hired an attorney
who specialized in elder care law. To qualify, they would
have to get Sid’s total assets down to $13,800. But before
they could even apply for the Medicaid program they
had to pay down $30,000 for two months at the nursing
home.
In November, with his life savings now well under the
$13,800, the nursing home accepted him into a new
fold: that of someone who is Medicaid pending. His
Social Security check — $1,700 a month — would be
handed over to the nursing home. Medicare pays part
of the cost — the first 100 days of rehabilitation. When
he is Medicaid approved, which could take six months
or longer, the nursing home will get paid in full for his
care. And Sid Schmukler, a man who owned a successful
company that made and sold leather craft kits, gets to
keep $50 a month from his Social Security check.
“There were potholes all along the way,” said his
daughter, Betty. “If we hadn’t gone to an elder care
attorney it would have delayed things even more.”
So What Is a Family To Do?
“The key to long-term planning for your loved one with
Alzheimer’s disease is to understand what your
needs are
today and five years from now,” said Matt Kudish, LMSW,
vice president and director of education, outreach
and caregiver services at the New York City Chapter
of the Alzheimer’s Association. “There is so much to
know, even for professionals navigating this system.
The Alzheimer’s Association has programs in place to
help families get the care they need. Families are often
dealing with the emotional burden of an Alzheimer’s
diagnosis and the legal/financial end of things adds a lot
more stress to the situation. The New York City Chapter
has social workers on staff to help identify the individual’s
needs and advise people how to proceed with filing the
right applications. Oftentimes, families need support
groups before they can take on the legal and financial
issues,” Kudish explained.
Probably one of the first things families need to do on the
heels of a diagnosis of Alzheimer’s disease is to have an open,honest and yes, difficult talk with their family member
about how he or she wants to live once the disease robs
them of their ability to make their own choices. This talk
can be guided by the three most important documents
that a person of any age should have: Advance Directives
include a Power of Attorney, a Living Will and a Health
Care Proxy. With this specific information in place, a family
will know for certain what they can medically and legally
do to protect a loved one, said Kudish.
It is extremely costly to care for a person with
Alzheimer’s disease and as you can see the system is such
that the family must often take a financial hit to qualify
for federal assistance. Many people believe Medicare
will pick up the tab for nursing assistance at home or in
a long-term care facility but that is not the case. If the
family wants to apply for long-term home care services
they often have to look to the Medicaid programs for
help. Qualifying for long-term care at home is tricky.
Medicaid will pay for aides to help take care of someone
with medical issues, but generally speaking, the program
does not recognize cognitive problems as a reason to
approve paying for home health aides.
Alzheimer’s experts recommend hiring a geriatric care
manager to meet with the patient in their home to get
to know their specific needs, well before the call to
Medicaid. The care managers can also be present during
the Medicaid evaluation. The care manager will know
what to tell the evaluator to increase the chances of the
application going through.
Many families caring for Alzheimer’s patients at home
bear the burden of the costs for nursing help. There are
also many community programs that offer high-level
care for
Alzheimer’s patients and also provide a respite for
round-the-clock care, which can be exhausting. “Many
people benefit from community-based programs,” said
Rebecca Carel, a licensed social worker and executive
director of Riverstone Senior Life Services. The
organization offers a range of programs for Alzheimer’s
patients, from a Memory Club for people in the early
stages of the disease to community care giving programs
that provide exercise and activities to keep people active
and focused. The Memory Club is a flat daily fee of
$40.00 while the community care giving programs can
range from $30 to $80 for a five-hour day, depending on
the financial resources of the individual. “We think it’s
important to keep people engaged,” said Carel.
As the disease progresses and the needs of the patient
increase, many families are faced with the issue of a longterm
placement. Amy Torres, the residential care specialist
at the New York City Chapter of the Alzheimer’s
Association, works with individuals and families to figure
out what their needs are. She sees everyday how life for
the Alzheimer’s patient can dramatically change and leave
caregivers unprepared to take the next and often final step of placing their family member in a long-term care
facility. “You don’t stop being a caregiver after a relative
goes in to a nursing facility,” she said. Torres advises
people to choose a nursing home close enough to make
the commute easier. Also, find a nursing home that
specializes in dementia care.
Each step along the way, organizations like the Alzheimer’s
Association can help overcome the legal and financial
hurdles. “It’s hard work to figure out what a person
can qualify for,” said Laura Federico, a licensed social
worker and care consultant who works with Torres and
Kudish at the New York City Chapter. “There are ways
to transfer assets and help people become eligible but
it takes long-term planning and should be done early
in the disease process.” The Chapter provides courses
facilitated by several elder law attorneys. The lawyers go
over the income and asset liabilities and talk about how to
transfer money out of the individual’s name to qualify for
Medicaid programs. Sometimes, long-term care insurance
policies will cover such home care but each policy is
different so families need to know precisely what the
insurance will cover. “A lot of people are shocked when
they hear how much it costs to get care for their loved
one,” Laura explained. “The costs are prohibitive.”
Navigating Nursing Home Placement
If a family has not done their financial and legal
homework and the patient has assets and needs longterm
nursing home placement there could be a hefty
penalty. There is no penalty for transferring assets when
applying for community Medicaid programs. But for
nursing home placement, Medicaid requires a lookback
at the last five years of banking statements. There
is a transfer penalty for an individual who turned over
their assets to relatives during this five-year window. For
example, a nursing home will require that the family
add up the individual’s assets that were transferred in the
last five years and divide by roughly $10,000 (about the
average monthly cost of the nursing home) and that will
provide a number for how many months the individual
has to pay privately for their care before Medicaid will
cover the cost of the care. If it is 10 months that would
mean that the person had transferred $100,000 in assets.
Once they have passed this point, and their $100,000
is spent on care at the facility, the person is eligible to
fill out the Medicaid institutional forms. The patient
will no longer have to pay, no matter how long it takes
for the application to be approved. The nursing home
will reclaim their costs retroactive to the month that the
personal checks stop.
In New York, Medicaid policy includes a provision for
couples called Spousal Refusal. This allows a patient
to apply for Medicaid and protects the spouse up to
a certain amount, around $109,000. This might not
be enough for healthy people to continue supporting
themselves for the rest of their lives, and this is another critical reason why people have to
get assets out of their names early
enough to protect their loved ones.
Spousal Refusal is exactly what
it sounds like: A spouse is saying
they can’t afford to pay for their
loved one’s care. By legal mandate,
Medicaid must adhere to this but
the agency can revisit this decision
and say that the spouse must
contribute something to the care of
their loved one.
A patient without a
spouse can keep
around $13,000 of his/
her life savings.
Lisa Giordano, Katherine’s daughter,
is relieved the family has made it
through the financial minefield
and can focus on the main goal of
making her mother comfortable.
The families shared their stories with
hopes that their struggles with the
complex and fragmented system can
lend insight into what to do to ease
your journey. The Alzheimer’s
Association New York City Chapter
24-hour Helpline, where families
can get help with emotional, legal
and financial issues around the clock
365 days a year, can be reached at
800-272-3900. Families can also
make an appointment with a care
consultant who can walk with
you through the process. “It is so
important to plan for the expected
and the unexpected,” Giordano said.
“Now, we can just be with mom and
not worry about these other issues.”
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