Caring for medically fragile children: Moms take action

ALTONA | As legislative discussion closes in on spring budget deadlines, mothers of medically fragile children here and throughout the state are knocking on doors. They're hoping lawmakers will enact specific new legislation to allow compensation for the at-home care they provide. The Complex Care Assistant Bill was co-sponsored by both Assemblyman Billy Jones and Sen. Dan Stec. It has languished in committee. A common sense measure, it could help stabilize families who take care of medically fragile children at home. Plattsburgh resident Geana Brassard Dyer is a registered nurse, but she paused her career to care for their family's son, Ronin, who has Cockayne Syndrome, a rare, genetic illness that leads to premature aging, growth failure and impaired nervous system development. The condition presents a wide range of physical and developmental health challenges that increase as time goes on. Dyer visited the New York State Assembly early in March, welcomed to Chambers by Jones. The appointment was something of an adventure for Ronin, who is now 4, as she spoke about their plight. State Assembly did approve a measure to designate October 2025 as Cockayne Syndrome Awareness Month. "The resolution passed the Assembly on March 3," Dyer told The Sun. "Every single one of them stood up. They all stood up and looked at us and clapped for I don't know how long. It was such an incredible feeling to see that our voices were heard. Billy really did represent us," she said. COMPLEX CARE ASSISTANT Raising awareness is a promising step, she said. But families who care for medically fragile children need real help. "Now we are pursuing the Complex Care Assistant Bill. The most significant part of this bill allocates funding for the home care we provide. The real challenge comes from the nursing shortage everywhere. It's impacting medically fragile children, specifically the children that require nurses at home." Parents with medically frail adult children, ages 21 and older, are reimbursed for care. And while funding through Medicaid does cover some hours of private-duty pediatric nursing, there are not enough nurses to fill the need. In Saranac, Kelsey Neri and her husband Shawn have had to leave their jobs and business endeavor to care for Cali, who is four years old, the same age as Ronin. Their daughter was diagnosed with severe encephalitis in 2022, the condition caused by Powassan virus transmitted by a tick bite. Several other local families face similar plight in managing other severe conditions with their children. "Right now both me and my husband are not working because of the need Cali has and the area that we live in," Neri told The Sun. "Cali has access to 168 hours of at-home nursing care a week through Medicaid for at-home nursing care," Neri said. "We've interviewed over 30 nurses and we don't have a single one available. We've had a couple people come for a few shifts, but they left. The distance and the amount of time Cali spends in-patient at hospitals or traveling is too much time off. We literally haven't had a single nurse come in and say 'I got this'," Neri said. "And most have asked to have a parent present at all times." Parents can be paid for home care if their child is an adult, age 21 and older. "Before the age of 21, we can't," Dyer said. "The CCA gap would fill that gap." For Neri, the Complex Care Assistant Bill would allow their family to stop relying on community so much. "Money is allocated for at-home nursing at $52 per hour, but the funding is not being used. It's just sitting there," Neri said. "The hourly cost for parental care is significantly lower and includes training." AT HOME ICU Moms have learned to take care of needs specific to their child. Whether tracheostomy tube or gastrostomy tube maintenance, IV medication or chest palpitation, tasks are every day, twenty-four hours a day. "Cali has no head or trunk control, she is G-tube dependent. She has seizures every single day, and because her muscles are really tight, we have AFOs (ankle foot orthosis) and a whole bunch of different orthotics that we switch out," Neri said. "She has medical appointments weekly, I checked the calendar and we were only home for 15 days in the month of February. How do we find a nurse for that?" Moms and dads from here -- and from all over New York -- have been knocking on doors in Albany, sharing photos of the veritable hospital rooms set up at home for their children. "Everyone that I've met has co-signed has signed on immediately," Neri said."We so desperately need it." Existing financial programs do not meet the needs of medically fragile children, Dyer said. "Ideally, this bill needs to hit where it is needed the most: to help kids like Cali who need so much care but families cannot find it. It would help people having to rely on their community and state programs to put food on the table. This bill will help lessen the burden for families. We're already carrying the emotional burden." "The CCA bill is specific and articulates the training parents would need. Each parent would be specifically trained for their own child. And the care would be evaluated annually." VOICES OF THE MEDICALLY FRAGILE Based in Albany, Shannon Reed-LaVigne created an organization called Voices of the Medically Fragile of New York State. She's assembled over 300 families and helped draft the Complex Care Assistant bill. "Our bill is only for medically fragile children who require private-duty nursing care," she said. "The parents would be paid less than the hourly rate for private duty nurses. My son Riley has a condition called mitochondrial disease. He can only have registered nursing care, and staffing my house at 102 hours weekly with an RN is astronomical compared to what you would pay me." This year is the second session that they have been pressing for decisive legislative response. "We are a much smaller sector of the disabled population, and I don't think people know that families are running ICUs in their home," Reed-LaVigne told The Sun. "The bill encompasses any condition that requires nursing. We have hundreds of kids that need specialized nursing care, often provided 24 hours a day by parents. This bill has built-in tracking to gauge hours used and any overpayment," Reed-LaVigne said. "There is a training component in our program with oversight. Authorization has to be re-approved every 180 days." NO BEDS The alternative to in-home care is a non-starter, moms said. "If a parent can't take of their children or can't afford to stay home, the child is placed in a pediatric nursing home or would have to stay in the hospital," Reed-LaVigne said. "And there are no beds." What could approval of this measure mean for families? "It's such a big question as it would truly be life-changing," Neri said. "For my family, this bill would mean financial survival. Without this bill, we are left with no real options—I can't return to work, and we are forced to rely on state assistance just to keep our family afloat. "This bill would allow us to be compensated for the advanced medical care we already provide, rather than being pushed further into financial ruin. "This bill wouldn't replace nursing—we desperately want a nurse—but it would help bridge the gap, so we can continue keeping Cali at home, where she belongs. "It really blows my mind that once a child is 21 the parents can be paid, yet most of the children I'm speaking for, including my own, won't ever be 21. We need this support now." State lawmakers are finalizing state budget items now, and leave for summer break on June 12. To keep in touch with the Voices of the Medically Fragile in New York State, visit their Facebook page. Or reach out via email: vmfnys@gmail.com ...................... SPRING FLING CARNIVAL FOR CS FOUNDATION Geana Dyer established the Cockayne Syndrome Foundation as a nationwide support group for families who care for children with CS. The foundation provides resources, information and supplies to help parents manage conditions related specifically to Cockayne Syndrome, along with travel funds and mobility support. To bring a little light to the end of winter, Dyer and community in Altona are hosting a Spring Fling Carnival at the Rainbow Banquet Hall's Brookside Barn on March 29. Ronin is doing well, overall, Dyer said of her four-year-old. "His walking is starting to decline. But he's very excited to be the king of the carnival next weekend," she said. "Let's bring some sunshine to this springtime." The Spring Fling Carnival fundraiser enlisted some peppy help from Northeastern Clinton County cheerleaders and North Country Model U.N. student volunteers, along with students from Plattsburgh State University to provide a few hours of fun and games with prizes, arts activities, and pizza. There will be cotton candy and ice cream and a special visit with Love on a Leash therapy dogs, along with baskets to raffle and 50/50 drawings. The Spring Fling Carnival is March 29 from 12 p.m. to 3 p.m. at the Rainbow Banquet Hall's Brookside Barn. Adult admission is $20; kids Grade 4 and up $15; Grade 3 and below $12; there is no admission cost for children age 2 and younger. All proceeds benefit the Cockayne Syndrome Foundation. Caregiver resources, medical travel accommodations, family support groups and family support resources are available through CSF, with links for more information online. thecockaynesyndromefoundation.org/caregiverresources To contact Dyer or donate via mail: Cockayne Syndrome Foundation, P.O. Box 1765, Plattsburgh, New York 12901 Or call: (518) 578-8683 Email: info@thecockaynesyndromefoundation.org

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Caring for medically fragile children: Moms take action

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