Updated: April 30, 2021 05:46 AM
Created: April 29, 2021 04:38 PM
PERINTON, N.Y. (WHEC) — Walk up the stairs of the Shanley home in Perinton, down a narrow hallway and you find yourself in the bedroom of 22-year-old Madeline Shanley.
She was once an honors student at Nazareth College.
But a disease that puzzled her parents and doctors for years has left her bedridden. Her parents say there is no medication that eases her pain.
Jennifer Shanley: "They tell people in her situation to try to learn to not recognize the pain. Not to think about it."
Brean: "Just ignore it."
Chris Barker Shanley: "Right. A lot of people don't die from these illnesses. They actually take their own lives."
Desperate for help and sleep, Chris and Jennifer Shanley went looking for a nurse. They say New York State directed them to find a Medicaid private duty nurse on their own. And they found one on a Facebook site for private duty nurses.
"When we interviewed Courtney we thought—here is somebody who can help us," Jennifer said.
The references checked out.
But three weeks later, the Shanley's noticed things missing, especially Jennifer's medication, so they checked their home security video, and they found something.
In a video captured from a security camera in the kitchen on Nov. 10, the Shanleys say the video shows the nurse they hired opening the kitchen drawer. The shows the person sifting through the contents in the drawer. After 90 seconds, the video shows she closes the door and throws up her hands.
"You know, like shrugs her shoulders, like 'This is all you got?'" Chris said.
The Shanley's kept looking and found more home surveillance video of the nurse on Nov. 12, Nov. 15 and Nov. 16.
"We saw her taking boxes and bags of items from Madeline's room upstairs, down the stairs, through our hallway, out the door and into the trunk of her car," Jennifer said.
The Shanleys say they were missing medication, money, iPads, gift cards, a vacuum cleaner, clothes, Madeline's homemade jewelry and a gold ring her grandmother took when she escaped the Holocaust.
Brean: "And you think that ring was in one of those boxes that she's hauling out the door?"
The Monroe County Sheriff's Office arrested and charged Courtney Ake with grand larceny in the thirrd degree and endangering the welfare of a disabled person in the first degree.
The court papers say she denied "medical care to Madeline while actively stealing property."
In the court documents, investigators say Ms. Ake stole $19,888.48 worth of goods.
"Courtney, I'm Berkeley Brean from News10NBC," I said as I walked up to Ms. Ake outside Perinton Town Court. Her court hearing on April 13 had just been postponed.
Ms. Ake did not want to talk.
The court says Ake is represented by the Monroe County Public Defender's office. I emailed Public Defender Tim Donaher and extended an offer to talk about the story and the case.
"Thank you for the opportunity, but we do not have a comment at this time," Donaher wrote back.
"I can't blame people for going out to try to find private duty people because that is their only option right now and I think that's worth talking about in your story. That's a newsworthy thing to bring up," Leanne Rorick said.
Rorick—at Lifespan—helps connect families to long-term care services including home care.
This is an extreme case, but she describes the situation the Shanleys face as the perfect storm.
Rorick: "The perfect storm we have in our community is we have people who are desperate to find care for loved ones, they're afraid to put them in a nursing home where they may not be able to visit or haven't been able to visit for months. There is an aide and worker shortage—so finding that licensed, protected oversight care is not possible for a lot of situations."
Rorick provided a link to a list of tools for families seeking in-home care.
To find those tools, click here.
New York State incentives make it harder to find in-home care for adults.
Medicaid pays private duty nurses as much as $17 more an hour to care for children.
In a 2020 report by the New York State Department of Health, the word shortage for nurses comes up 21 times including "severe LPN shortages."
The state registry for private duty nurses lists more than 100 nurses in Monroe County. But the website says it's for "medically fragile children."
I emailed approximately 50 nurses on the list asking if they were available to work. Half of them replied and more than half of the respondents said they were not available.
Just by being on the list, these nurses can earn 30% on top of their Medicaid pay caring for children not adults.
It's a system that leaves families who need immediate help for adult children or parents searching and fending for themselves with little oversight.
"And because of that, there are some nurses who thrive in an unregulated environment," Jennifer said.
"There are wonderful nurses out there. And we owe so much to some truly compassionate, talented, amazing people," Chris said. "But there are people who are preying upon our most vulnerable citizens."
The case involving Ms. Ake is in the Monroe County District Attorney's Economic Crime Bureau. These are only charges against Ms. Ake. She pleaded not guilty.
Just this week, the county announced an incentive program to hire and retain nurses in nursing homes.
The plan eventually includes in-home care.
What happened to all the missing items, especially her grandmother's ring?
That ring is missing. The Shanley's estimate the value at $5,000.
The Shanleys found another ring at a pawn shop in Webster.
The Shanleys say Ms. Ake returned about $700 worth of jewelry in a ziplock bag and stuffed it in their mailbox hours after they confronted the nurse with stealing. The Shanley's say the contents included used gift cards.
The sheriff's office told me they're still looking for items.
And what about the family. Who is taking care of Madeline now?
The Shanleys say they have an aide in the home getting $15 an hour. That's approximately half of what a private duty nurse can get paid, and they say the aide can't administer medication.
So the Shanleys have to get up in the middle of the night and do that themselves.
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