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HEALTH Family urges higher nursing wages Walpole teen requires continuous care

The Walpole Times - 7/14/2017

Fifteen-year-old Caitlin McCarthy loves to bake. Cookies, cupcakes, Funfetti, she bakes it all.

"If you're ever hungry, she bakes at least once a week," her mother Sue said with a laugh. "She gets so completely excited when we grab one of her baked goods and we tell her how delicious it is."

For Caitlin, watching others enjoy her sugary snacks is a day-maker, an interesting trait, said Sue, because Caitlin has never been able to eat solid food in her life.

"It doesn't bother her," Sue said. "It makes her happy to make something and have us be excited about it."

Caitlin is a very special and fragile medical case, one that requires 24-hour continuous skilled nursing care. The kind of at-home nursing that Caitlin requires comes with a hefty price tag for both the family and the state, and the state isn't completely holding up its end of the deal.

The problem is getting a qualified nurse on shift 24-hours a day seven days a week at the reimbursement wages being offered by MassHealth. There are not enough nurses willing to work for families like the McCarthys when the pay is much better elsewhere. The McCarthy family and 900 others in Massachusetts are trying to wrestle with the same issue.

In 2016 alone, home care providers lost 37 percent of nurses licensed to work with cases like Caitlin's, leaving about 47 percent of these patients without the care they require to live stably.

The nurses who left set out for higher paying jobs at hospitals and other care facilities. The wage provided by MassHealth for the nurses is about $30 an hour, $15 to $25 less than they would make by taking their skills elsewhere.

Caitlin was diagnosed at the age of 1 with mitochondrial disease, a disease that affects the energy stores in most of the body's cells. Symptoms take a hard toll on the body. They include seizures, strokes, severe developmental delays, inability to walk, talk and digest food combined with a laundry list of other complications.

At the age of five, Caitlin was diagnosed with Rett syndrome, a neurological disorder that affects a variety of cognitive and autonomic functions.

Just recently, Caitlin was also diagnosed with progressive kidney disease, a devastating development for the family, and an added layer of complication for her nurses.

The combination of diseases makes Caitlin a case that even the most regarded long-term care facilities shy away from.

Though the family has absolutely no intention of sending their daughter to a long-term care facility, Sue said that the possibility of being forced to is a very real one. If she loses enough nurses to higher paying jobs and cannot fill the hours, then it will be the only viable option for Caitlin's safety.

On average, it would cost about $500 a day to keep Caitlin in a care facility, while it costs twice that amount to keep her at home.

Sen. Barbara L'italien and other legislators from Massachusetts including Rep. John Rogers, who represents Walpole, filed an amendment in May to raise the nurse's wages through MassHealth. The rates have been increased only once in the last two decades.

The rates increased by $2 per hour in January and a similar increase was proposed in March. The goal is to reach about $46 an hour, about a $16 million increase.

This issue truly hits home for Sue, who lost a nurse after a decade because she could not afford to work for MassHealth reimbursement wages anymore. The nurse had been with Caitlin since she was 22 months old and had to call it quits after 8 years without a raise.

Currently, Caitlin has about 158 out of 168 hours a week covered, but that's on a perfect week. Nurses call out sick, go on vacation and live their own lives outside of Caitlin's bedroom.

Finding a replacement is near impossible, Sue said. Oftentimes she'll have to do the work that is usually done by the skilled hands of a trained nurse, and hope nothing goes wrong on her watch.

"It becomes quite scary to be alone with her and that is a hard thing to admit as her mother," Sue said.

Though having someone in the house during most hours of the day means sacrificing privacy completely, it also means peace of mind.

"We're at the place with Caitlin that we're more scared to be alone than it bothers us to have someone in our home," she said. "Thankfully we haven't had too many issues (with privacy), but it stinks."

Sue said that her primary insurance covers co-pays for medications and appointments as well as Caitlin's weekly supplies, which can add up to about $60,000 a month for such items as catheters, IVs and many other pieces of equipment.

There are things several things that the McCarthys have to pay for out of pocket such as a hospital bed for home - $15,000, a handicap accessible van - $60,000, a number of supplies to increase comfort for Caitlin, and about $700 in electric bills a month.

"She's an expensive kid," Sue said. "Running a medical ICU out of your home is expensive."

Sue hopes the situation will improve with the proper advocacy and attention, but for now, Caitlin will just keep on doing the things she loves - watching movies with her dad on the couch, listening to her older brothers read her stories, and of course, baking everyone cupcakes.