Facing mounting pressure, New Hampshire’s three Medicaid Managed Care Organizations backed away from cuts they made to the care hours for medically complex children.
A coalition of affected parents banded together to form NH Families for Home Nursing after they received word from their Managed Care Organizations that their paid nursing hours had been reduced — or, in some cases, altogether eliminated.
They have been advocating for a restoration of the hours they argued are “life-sustaining” for their children.
“It is completely unacceptable that managed care organizations reduced critical nursing services for some of New Hampshire’s most vulnerable children,” Governor Kelly Ayotte said in a statement on last week. “As soon as we learned this was happening, I directed the Department of Health and Human Services to work with the MCOs to restore those services, and they have committed to doing so.”
The Home Care for Children With Severe Disabilities Program, also known as the Katie Beckett Program, allows children to receive medical care while living with their families rather than at an institution. It’s funded by the state’s three Managed Care Organizations: AmeriHealth Caritas New Hampshire, NH Healthy Families and WellSense Health Plan.
On Thursday, DHHS said it was reviewing the organizations’ decisions in 13 cases where children had their services restored, in addition to “reviewing all other cases to determine if there were other inappropriate reductions in services,” according to spokesperson Jake Leon.
“The MCOs have agreed not to implement any reduction of home health hours for children covered under the Katie Beckett in Medicaid without DHHS’ independent review and clearance,” Leon said in a statement.
Families are beginning to see a temporary reinstatement of their hours. However, for some, it’s not quite that simple.
Families are supposed to receive an advance notice of 30 business days before any reductions go into effect, according to regulations set by the Department of Health and Human Services.
But for Nashua resident Jennifer Gentry, whose 20-year-old son receives the adult equivalent of Katie Beckett services through Aid to the Permanently and Totally Disabled, the denial notice arrived the same day it went into effect. His 50 hours of private duty nursing care plummeted to zero.
Her son Ethan “did not meet the medically necessary criteria,” according to WellSense, although his condition hadn’t changed since the 50 hours were approved in 2018 when he started on Katie Beckett services. When Gentry appealed the decision, the company upheld its denial. Earlier this week, she learned that WellSense would adjust the timing of its decision from July 8 to August 18 “to allow sufficient time to adjust the member’s plan of care.”
Half of that time period has already passed. Ethan has had the same nurse for six years, and had spent the past several weeks without her, which is disruptive and confusing for him, his mom said.
She said the uncertainty has been tough on her family, and since coverage is needed for Ethan, she’s been forced to call out from work to care for him.
“It’s scary not knowing every week what’s going to happen now,” Gentry said. “That’s what it seems to be like lately. Like, ‘okay, am I going to be able to work this week? Are we going to have nursing? Is something going to get cut?’ So it’s extremely stressful.”
She wants to see a full restoration “as authorization, not for 30 days,” she added.
Executive Councilor Janet Stevens, who represents the majority of Rockingham County, said she was “absolutely disgusted” at the reductions made by the managed care organizations. She has been working with families to push for change.
Stevens worries about the long-term impacts that these cuts could have on families.
“While there may be a restoration of hours, many of them lost the nurses that were lovingly caring for their family,” she said. “We have a nursing shortage in our state and nationally. That is something Medicaid will be working on, to assist these families — not only the restoration of hours, but getting the staff back.”
Ayotte plans to keep advocating for those affected by the cuts.
“We will continue investigating to ensure this never happens again, determine whether any other families were affected, and hold the MCOs accountable for following the rules and protecting essential services for these children,” she said in a statement.
