TABLE 4

Policies Shaping Care for Pediatric CCI: Illustrative Stakeholder Quotations

PoliciesStakeholder Quotations
Health insuranceGaps in home care coverage
 Before the Medicaid waiver, we were spending between 5 and 800 dollars a month on copays and equipment rentals and all that stuff. State 4, parent
 It would be nice if the reimbursement was enough from Medicaid or private insurance so that the home health agencies would want to make it work. Because it’s really terrible when you’ve got a family that is ready and they’re able to take this child home. But without support of a home health agency…now they’ll take care of the adult down the street, but they’re not going to take this child? That’s hard. State 2, social worker
Inadequacy of waivers
 The fact that the model waiver is capped at 200 patients sometimes keeps a child in the hospital for months. I think that limit was established many years ago when there were fewer patients who needed the services. Now we have increased survival, more children surviving with some disabilities, and we have the same 200 patient cap. State 1, nurse/NP
Medical necessityCriteria inadequate for CCI
 Home nursing provided by the medical assistance has super strict policies for what qualifies as medically necessary. Things that they don’t deem medically necessary are necessary, especially for a family to be able to function normally as a family unit. With supplies, insurance companies will only provide a bare minimum. For example, they were going to give us 1 trach per month to change her trach only 1 time a month, instead of the suggested once per week. So we had to fight for that. They were going to give us 1 trach tie per week so she would have had to leave these trach strings on her neck for an entire week instead of being changed once or twice daily, which is suggested. We’ve had to fight and get Letter of Medical Necessity after Letter of Medical Necessity to get these items. I think making it easier for those, such as having some sort of standard on the quantity of the supplies, especially for children with trachs and G-tubes, no matter who the insurance company is would be helpful. The supplies provided need to actually meet the needs for the child as suggested by physicians and studies surrounding recommended care. State 1, parent
Available care sitesGaps in regional availability
 I think the biggest policy problem we have is that you can go to parts of the country where you can’t find a single facility for like several states to take care of a trached and ventilated baby. It’s about payment, and it’s about local resources. State 3, physician
 We don’t have facilities available to us in the state for children with mechanical ventilation. State 2, physician
Rethinking standards
 There are several standards that make institutionalization of children least desirable. They’re not building a lot of long-term care facilities based on some of those regulations for children. But for families that can’t care for the children, it offers very few other alternatives if they can’t be cared for in the home, and there are no or limited health care facilities that offer long-term care for the children. Then that leads basically hospitals caring for patients much longer than they should. State 2, nurse/NP
 I think the other big challenge is the level of training that a person needs as a paid person to care for somebody. Parents can be taught to do this fairly well, without medical background. I think that there could probably be a whole cohort of people who could be trained to do this very well, whose medical background was more limited. My impression is that RNs, rather than LPNs, typically do home nursing. If that was the case, I would advocate for allowing people with less formal training to do this, as long as they had specific training. State 5, physician
Family advocatesFamilies must understand policies
 It’s important to try to educate and enable families and caregivers as much as possible. Not just in terms of the basic care decisions, but we could improve education to them in terms of medicolegal rights. Empower them to make decisions for their children and then help them understand how to maneuver through the difficulties of our health insurance systems, Medicaid, Medicare, Social Security. What do they do when insurance companies…when they receive denials? Denials for equipment, denials for medications, which at times have led to hospitalizations. Trying to give them the support and the services that they need to try to maneuver through some of these issues. State 5, physician
 One of the disability categories is “other health impairment.” So kids who have disabilities, kids who have health impairments that affect their ability to benefit from education are entitled to special education services. And if they need nursing services, they’re entitled to them. It’s such a strong law. I would just make sure that people knew that they were entitled. There’s also another law under which kids are entitled to accommodations. Just to make sure people know about it, and make sure that they are able to access the sort of services. State 1, other professional
  • G-tube, gastronomy tube; LPN, licensed practical nurse; RN, registered nurse.