There’s No Place Like Home

Vol. 15 •Issue 3 • Page 27
Home Pathways

There’s No Place Like Home

More and more infants are leaving the hospital technology-dependent, as length of stay becomes shorter and shorter.

Ahigh-tech infant’s discharge journey is a feat at best, but it’s rewarding for all involved when the baby finally gets to go home and thrive.

Categories of infants who may benefit from respiratory assistance include babies born extremely premature with chronic lung disease or those who may have suffered birth injuries. Other infants may have congenital anomalies affecting their anatomy or suffer from severe myopathies. Additionally, they may be affected by co-morbidities that complicate their overall well-being such as cardiac, neurologic and metabolic disorders.

These children may go home with a multitude of medical devices — tracheostomy tubes, oxygen, gastrostomy tubes, nasogastric tubes and/or ventilators. Discharge planning begins on the day of admission once the infant’s high technology needs are known.

At Children’s Specialized Hospital, Mountainside, N.J., the medical team, which includes the physician, respiratory therapist, nursing staff and patient care coordinator, assesses and determines the infant’s readiness for discharge to home. These infants must first be able to use a portable ventilator and subsequently maximize their weaning potential before being able to go home. Successful transition to home depends on three key factors: payer source, home care resources and parent/home readiness.

Payer source

The first big hurdle to overcome in discharge planning is to determine who will pay for the services. This consists of finding coverage for all durable medical equipment (DME), private duty nursing (PDN) and home therapies. Reimbursement for these items varies widely from insurance to insurance.

Private insurance benefits have to be determined early in the hospital stay because they may not be sufficient. Many insurances have no PDN benefits at all or are too limited to support the child year-round. These children need nursing 365 days a year, and “30-60 days of covered nursing benefits” won’t suffice.

Ideally, if the child is eligible to receive Medicaid as a secondary insurance, this will supplement the primary insurance. Those patients with only Medicaid or HMO-managed Medicaid will have their PDN/DME needs met by their insurance and don’t require supplemental insurance assistance.

Medicaid recipients (either as their primary or secondary coverage) will receive PDN coverage through either Early and Periodic Screening, Diagnosis and Treatment/PDN services (EPSDT), or through their HMO-managed Medicaid. A letter of medical necessity precisely identifying the skilled nursing needs will support the hours requested. Infants with Medicaid (but no HMO attached) apply for EPSDT and await the determination of the hours approved. Infants with an HMO-managed Medicaid will be case managed by the HMO to determine the level of nursing coverage approved.

Either the HMO or EPSDT will follow the child at home to identify if continued services are needed. It has become almost impossible to obtain 24 hours of nursing coverage per day, but eight to 16 hours per day usually is approved depending on the child’s needs.

For those children who don’t qualify for Medicaid in the community, the struggle to fund the home care reimbursement begins. An alternative source of payment must be located.

The next avenue to explore is the Community Resources for People with Disabilities Waiver (CRPD waiver). It’s available to children with special needs who meet medical necessity for home care services (PDN/DME) but don’t qualify for Medicaid in the community, and unfortunately their insurance won’t adequately support their high technology needs.

This waiver, once completed, can take at least six to eight weeks to be approved; therefore, it must be applied for almost immediately upon admission in order to be available for discharge needs.

It’s a limited fund that can pay for PDN or DME over the course of the year on a budgeted basis. The waiver can dwindle quite quickly depending on where the reimbursement goes (nursing coverage vs. DME or both). The parent has to be conscious each month of how to budget the funds so all their needs are met over the course of the year. If the money is used up prematurely, it leaves no means by which to pay for the home care services.

This waiver program is coordinated by case managers in Special Child Health Services (SCHS) in each county. The child must be referred to their local SCHS prior to discharge.

Finding resources

Once the payer source has been determined, the next hurdle is finding the resources for home care. The “hunt” for nurses and therapists begins. This requires making referrals to a variety of PDN/home care agencies that will accept all the forms of reimbursement involved.

Historically speaking, EPSDT reimbursement is quite low in relation to nursing salaries, so it can be difficult to find nurses to take the case (despite the approved hours allotted). HMO-managed Medicaids reimburse at higher rates and usually are well-received by the PDN agencies. Private insurance for the most part provides the highest reimbursement, and it’s readily accepted by in-network providers.

If multiple insurances or a waiver exist, you must find an agency that can accept all of them over the course of the year to guarantee continuity of care.

Physical, occupational and speech therapy must be obtained in the community to maximize the child’s potential over time. Every child (birth to 3 years old) must be referred to their local SCHS agency to receive Early Intervention Program (EIP) therapies within the home. Additional therapy through the child’s health insurance usually is needed to supplement EIP. Therapy can be done as an outpatient or within the home through home care agencies. For medically fragile children who are at high risk for infection, home therapy is preferable.

Unfortunately, pediatric therapists can be scarce in the community, or the therapy may not be a covered benefit with insurances. The same aforementioned issues that affect nursing coverage ultimately affect therapy in the community.

Parent/home readiness

The final barrier to discharge planning is the parent and home readiness. DME/supplies need to be ordered and sent to the home in preparation for discharge. A list is compiled and approved through the payer source.

Most DME is easily obtained through in-network providers of the insurance company. Medicaid recipients usually get their DME needs met by their insurance.

A home assessment must be done to identify barriers to discharge (e.g., electrical issues, accessibility and/or adequate space). This is completed early so issues can be resolved in advance of discharge.

The home’s status also affects the feasibility of the discharge: Is it geographically remote or located in an unsafe area? Does it offer parking, or is it close to public transportation? Is the home poorly maintained? All these issues can affect locating nurses/therapists who will agree to staff the case.

It’s best to have the PDN agency (in addition to the DME company) visit the home before discharge to address these issues head-on. Ideally, starting this process four to six weeks ahead of discharge usually permits adequate time to find all the resources needed.

Intense training must be done with the parents/caregivers from the onset. This involves parents learning technical skills while also honing their judgment to be able to assess their child’s high tech needs and know how to troubleshoot in potentially life-threatening situations. Only when this training is complete and the child has reached his or her rehabilitation goal will the child be deemed medically stable to go home.

Despite the above preparation, there are times when little or less than optimal nursing coverage is obtained. It falls upon the inpatient medical team and the parents to decide if discharge is still feasible when this occurs. For some, it isn’t a barrier, but for others, it’s too overwhelming and impossible to safely send the infant home. In a small amount of cases, long-term care must be used as an alternative until optimal discharge conditions can be secured.

It’s a credit to the medical team and parents when the plan comes together, and the child benefits from the process. The challenge is worth the effort for all those involved because there’s no place like home.

Maria Regan, RN, BSN, is a patient care coordinator for high-technology children at Children’s Specialized Hospital, Mountainside, N.J.