Eight of nine families comprising the New Hampshire Families for Home Nursing report needing to ration or reuse supplies for their medically complex children due to reduced or incomplete shipments.
The nine families across the state united this summer to advocate against cuts to nursing hours. Their children receive services through the Home Care for Children with Severe Disabilities Program, often referred to as Katie Beckett. The state ultimately stepped in to mandate that Managed Care Organizations restore nursing hours and provide adequate written notice ahead of changes to care plans.
Now, the families are flagging another problem: the Medicaid-covered supplies their children need, in some cases, are being shipped in reduced quantities or aren’t arriving on time. For children with g-tubes delivering nutrition or ventilators helping them breathe, their safety hinges on these supplies.
“This needs further investigation,” said Ward 3 Executive Councilor Janet Stevens, who has been helping families advocate at the state level.
Stevens sent a letter to the state Department of Health and Human Services on Monday asking for an intervention. She and the coalition of families want to see a standardization of practice among the three Granite State MCOs: Wellsense, AmeriHealth and NH Healthy Families.
She has previously discussed these concerns with the state’s Medicaid director and the chief medical officer before speaking with Lori Weaver, the commissioner of DHHS, at last week’s Executive Council meeting.
Durable Medical Equipment, or DME, is ordered as a prescription and shipped to their homes. These are not the type of materials families can simply purchase from an ordinary store. Each MCO, which administers Medicaid benefits to NH recipients, puts the order through to the DME.
This is where the discrepancies are happening, said Belmont mother Sarah Husband, whose four-year-old son receives Katie Beckett services.
When Husband encountered suctioning supply refill roadblocks for her son, she called her DME company. Husband said the representative told her that the MCO “had told them not to make refill calls anymore.”
“That’s been happening to a lot of people,” she said. “It’s some very shady stuff, and they’re both for-profit companies, so it’s hard to figure out who is this coming from. Like, is it the DMEs that are being stingy with supplies, or is it the MCOs being like, ‘We don’t want to give you the money for the supplies?'”
The nine families who filled out a survey that helped inform Stevens’ letter listed the following supply categories as being used on a recurring basis: Enteral/feeding, incontinence, suction, oxygen, tracheostomy, ventilator, nebulizer, cough assist, pulse oximeter/monitoring, diabetic, wound care, catheter/urological, ostomy and other disposable medical supplies.
Only three of the nine families reported receiving their full monthly DME order of supplies. Another three families said they frequently receive incomplete shipments. The majority of families listed enteral/feeding supplies as the area that seems to be the most impacted.
Under Medicaid rules, MCOs “must ensure that the services are sufficient in amount, duration, or scope to reasonably achieve the purpose for which the services are furnished” and “may not arbitrarily deny or reduce the amount, duration, or scope of a required service solely because of diagnosis, type of illness, or condition of the beneficiary.”
Still, another struggle is that not every type of medical supply qualifies for coverage, and the supplies covered differ by MCO, per Husband, who helped form New Hampshire Families for Home Nursing earlier this summer.
“If you need wipes to change diapers, those are not covered,” said Husband. “For a while, we couldn’t get Pedialyte covered, and a lot of people have issues getting Pedialyte covered. And the thing with Pedialyte is it’s only good for 48 hours once you open it. And so, if you only need a little bit every day, then you still need a new bottle every two days.”
A case of wipes costs about $50, she estimates. Her son receives an allotment of 12 syringes per month. He requires several dozen each day to administer medications.
“We end up buying cases of them out of pocket because we just can’t get what we need,” she said.
As of late Tuesday morning, Stevens had not yet received a response from DHHS. She reiterated her commitment to helping Katie Beckett families.
“These are our most vulnerable residents,” she said.
