IVUN: Tell me a little bit about James and his situation.

 

McLelland: My son James is 12 years old. He has had a tracheostomy since birth due to craniofacial syndrome and also uses a ventilator at night. He is in the process of transitioning from a Trilogy to an Evo. We just got custody of a new one when the most recent recall was announced. Now we're in a holding pattern while the DME decides which recall is worse.

 

IVUN: The recall has certainly been unfortunate. I think there are many people who feel that communication from Philips about the recall wasn’t great and guidance over how to deal with the recall was incomplete.

 

McLelland: The guidance was to talk to your doctor, but it's not like doctors have a secret closet full of ventilators. We're now three years into the recall. I believe I’m really good at managing the system. We have good insurance, and it was still three years before we got a replacement - which is still not functional because of the filter recall.

 

I spoke to a product liability attorney, and they don't even know how to settle this because how do you prove damage? Who is liable when the DME is the one that simply couldn't manage to replace it? Philips recalled this ventilator, and we continued using it for three years.

 

IVUN: You've spoken before about some of the dysfunction in the home nursing care system. In your opinion, what factors contribute to this dysfunction, particularly for children who use ventilators?

 

McLelland: So the number one factor is a systematic refusal to pay market wages. Nurses in institutional care are making between $32 and $38 per hour here in California. The reimbursement rate for licensed vocational nurses (LVNs) who work home care cases, number one, is not bracketed, so complex cases pay more money; and number two, it's simply not competitive. The nursing agencies here make $44.12 per hour and they pay down between $24 and $26 per hour to the actual nurse who works the case. So nurses are looking at a $10 pay cut off the top to take a home care case. And as bad as it is in California, it's worse everywhere else. There are nurses making under $15 per hour in other states.

 

IVUN: So in your opinion, is increasing pay the solution, or are there other initiatives that would need to be put in place to improve the situation?

 

McLelland: So, across the board, we need pay increases for Medicaid - both Early and Periodic Screening, Diagnostic and Treatment (EPSDT) nursing, which addresses children, and also for adults, whose rates generally mirror those rates, even though adults are heavier, more difficult to manage and more complex. So as bad as the staffing issues are for the pediatric cases, it's a hundred times worse for adults. We also need to resolve pipeline issues with new nurses entering the field and with nurses staying in the field. Some states, California for one, have been working to remove tracheostomy and ventilator care from the scope of practice for LVNs, making it a registered nurse-only task, and that would absolutely destroy home care and long-term care as we know it. As bad as the staffing problems are for LVNs, if we had to replace LVNs with RNs, no case would ever be staffed.

 

IVUN: Is this a state-level issue or is there a federal solution?

 

McLelland: With Medicaid rates, it's a 50-state grind because Medicaid funding goes to the states who then contract and pick away at those rates. At the federal level, Money Follows the Person is the correct way to fix home care funding. And with Money Follows the Person, states would simply have an incentive to fix their home nursing rates. For example, the rate for my son to be in sub-acute is more than half a million dollars per year. That is a substantial budget that is simply not spent in home care. Number one, because there's no staffing. But even if he were staffed at 24 hours a day, it would be nowhere close to the cost of institutional care.

 

IVUN: In looking at the transition process from institution to home, and considering James’s experience with that, as well, what changes might be made to improve that experience?

 

McLelland: I would say that hospitals need to take an active role in: 1) helping families actually find nursing, and 2) when they can't find workarounds, arriving at a safe discharge plan. What I see a lot of is hospitals holding kids until parents can arrange 16 hours/day of nursing. That's simply not possible. It's a hoop that cannot be jumped through. So, these kids wind up in institutional care for months or years on end, but as soon as discharge is processed, no one ever asks again if you have home nursing. It's a one-time thing where they throw up this massive barrier and then if your nurse quits, no one cares ever again. It's a bizarre liability-based requirement.

 

IVUN: We’ve heard from a lot of parents who don’t feel properly educated before their children transition to home. Is better patient education needed?

 

McLelland: I think no matter how well you train mom and dad on management of a ventilator, sooner or later they have to go to sleep. So, no amount of training and no amount of competence can solve the problem of 24-hour care.

 

IVUN: A big issue for those on home mechanical ventilation in the early part of the pandemic was a shortage of ventilator supplies, particularly circuits. How has that situation evolved?

 

McLelland: On the supply side, the situation has improved. The shortages are less real, however durable medical equipment (DME) companies and insurance companies got used to supplying less. And so what we've seen is that, even though the emergency of the supply chain has faded, the rationing just became normal.

 

In California, the standard order here was four circuits per month. Through Covid that went down to two, then down to one, and then we simply didn't get circuits for about six months. Now they just brought the order back to two per month, which is a 50% reduction, but it's just the way things are now. And no one is tracking whether there are infections, whether there is wear and tear to stoma, or whether there are deaths resulting from this. So I would say that it's been an experiment, but if no one pays attention to the results, then it's just rationing.

 

The Bivona tracheostomy tubes are still in hard shortage. At our ENT appointment two weeks ago, the doctor said that they've been leaving kids intubated for lack of tracheostomy tubes, which is catastrophically bad. When the shortages hit the home care population, it was like, "Okay, fine, I'm washing and reusing trachs in the kitchen sink. I'm sterilizing in an Instant Pot. It's not great. But we have a trach tube." For children to remain sedated and on an endotracheal tube? That's insanity.

 

IVUN: In your opinion, what can be done to improve the situation?

 

McLelland: Increased Medicaid reimbursement rates for the tubes, which I hate doing because it's rewarding bad behavior from the manufacturer. The manufacturing plants have prioritized profitable products over pediatric trach tubes. They've made a business decision to keep this shortage in place.

 

I think overall every solution comes down to money. Increase Medicaid funding across the board and create clear pathways to long-term Medicaid eligibility in order to access home care and equipment.

 

IVUN: Besides equipment shortages, what are some other areas of concern?