Complex Care Act pushed for medically fragile New Yorkers

GLENVILLE, N.Y. (NEWS10) – Some New Yorkers who live with complex medical conditions require 24/7 assistance. For parents of medically fragile children, that often means they have to step away from their careers to care for their children full-time. 

Those parents have pushed lawmakers to create a program that would recognize their unique positions and pay them for it.

When NEWS10 went to Janine Lampo’s home, we had to mask up. She administers many forms of medical care to her 4-year-old son Mason, who is medically fragile, when their two nurses are unavailable.

She describes it as a mini hospital operating out of their home, 24/7. That’s why she wants the Complex Care Act passed.

Mason has Down syndrome and was diagnosed with a rare form of epilepsy at four months old. He suffered 100 seizures a day.

Since then, his family discovered he has chronic respiratory failure, autism and sleep apnea. Lampo said he will always have complex needs. He requires a table full of supplies daily.

On top of the emotional toll, Lampo and others were working full-time and providing for their families before stepping away.

“Not being able to contribute financially to my family is very hard on my own emotions. You know, as a woman, as a mother, you want to be able to provide for your family. And unfortunately, I’m unable to do that financially right now,” said Lampo.

“It hurts my heart often,” said Lampo. She struggles with not being able to financially help her family. 

“I had a six-figure salary. I started my sales career in sales training and then moved into sales management,” said Lampo. “We were a family of four, now a family of five, surviving on two incomes. And we’ve had to stop and survive on one. It’s been very challenging and difficult.” 

Lampo met Shannon Lavigne through the struggle. Lavigne is the co-founder of Voices of the Medically Fragile of New York. Her son has mitochondrial disease and also requires complex care.

“Our nation is facing its largest nursing shortage ever and there is no end in sight for it. There is no quick answer for this and our families are filling in the gaps for the state when we can’t find nurses,” said Lavigne. 

Lavigne said they’d prefer having experienced nurses but it’s been hard finding them. Lampo said it can uproot the livelihoods of families. 

“We know women who have become homeless because they’re caring for their child,” said Lampo.

They believe the Complex Care Act is the answer. The bill would amend the social services law to authorize Medicaid Coverage for complex care services and establish the Complex Care Assistant Services Program. 

It’s sponsored by Democratic Senator Shelley Mayer. She said the Complex Care Act is needed to not only get parents paid, but to get them the expert certification needed.  

 “You will find most of these mothers have taught themselves or learned, but we’re going to provide that there’s expert certification and approval in order to get both compensated and also to be authorized to do this under New York law,” said Mayer.

Lavigne echoed Mayer and said they need the extra assistance. 

“Help the mom when she comes home from the hospital, and she doesn’t know what to do. Sometimes we’re taught how to do lifesaving things in five minutes at a discharge, and sometimes we haven’t slept in 48 hours. And, I can tell you, in the middle of the night, when things go wrong, you want someone to call you. You want that,” said Lavigne.

The bill would provide compensation to parents for 50 hours a week.

“Let’s find a way to at least provide them with modest compensation, provided they’re approved and overseen in their work,” said Mayer.

Mayor said there’s a fraction of families that would qualify for the program.

“A small number of children but with extremely complex medical conditions that do require this care. I’m always a person who has cared about children and families and believe that the role of the state is to provide assistance and support for families in the greatest need,” said Mayer.

“I will give you the numbers out of Albany Medical Center, and the ones that they would serve that will qualify for this are 150 children. And Albany Med covers pretty much from here to Canada. So that gives you an idea of how small our community actually is,” said Lavigne.

Both Lavigne and Lampo said they are approved for more than 100 hours of nursing care a week, but because of a nursing shortage, they can barely fill 15-30 hours. 

“We are fighting very, very hard to get it on the health committee’s calendar this year. We’re feeling very hopeful. We’re hearing really good things coming out of the Assembly, and we are now really focusing on the Senate really trying to get the word out there. Senator Mayer has been an amazing, amazing partner with us. Assemblymember Steck is really fighting for the bill. You know, we want to thank them for really going to war for us,” said Lavigne.

Senator Mayer said she’s hopeful the bill will pass this year. 

“I think that we’ve amended the bill to address some of the concerns that we think will be brought up by the Department of Health and others. We have a number of people signed on,” said Mayer. She added there’s bipartisan support for the bill. 

“But empathy and caring for other human beings in distress is not only an essential part of being a person, but it’s an essential part of our job here,” said Mayer.

“The money should be there. Like, you’ve heard what her family is approved for, what my family is approved for. This isn’t a new pool of money. It’s just money that’s actually not being spent cause we just don’t have the nurses,” said Lavigne.