By: Mark Hudak, MD, FAAP & Edwin Simpser, MD, FAAP
Advances in technology have made it possible for many infants and children with chronic and/or complex medical needs to receive comprehensive care in the comfort of their own homes. For example, infants can now be discharged from the NICU and PICU on life-sustaining technologies such as ventilators, tracheotomy and gastric tubes, and apnea monitors. Not only does this beat long-term stays in a hospital or chronic care facility, it also is more cost effective—a win-win situation!
However, all the specifics in receiving and paying for your child's home health care can be confusing and trying to sort through the elements and options can be stressful. Many children eligible do not receive home care due to a shortage of skilled caregivers, lacking coverage, and poor insurance payouts. The American Academy of Pediatrics (AAP) believes this is wrong and is advocating for change. All eligible children should have access to necessary and high-quality home care services.
The AAP policy statement, "Financing of Pediatric Home Health Care," outlines the most pressing issues on this topic and makes recommendations about rules and payment reforms.
Here is a selection of frequently asked questions about the many facets involved in pediatric home health care, how it all gets paid for, and recommended sources for further information.
How do I know if my child is a candidate for home care services?
Any child leaving the hospital or in a doctor's practice with a complex and/or chronic medical problem, or physical trauma, is a candidate for home care services. Some examples of children who would qualify for home care include:
Premature infants: Most premature infants (24 – 32 weeks) have complications that would qualify them for home care.
Respiratory-compromised children: Ventilator dependent, bronchopulmonary dysplasia, traumatic brain injury complications, syndrome- related complications, tracheostomy (either permanent or temporary).
Cardiac-compromised children: Children with complications related to a congenital heart defect, syndrome-related complications, congenital anomaly, etc.
Neurologically-compromised children: Seizure disorders, cerebral palsy, syndrome-related complications, etc.
Gastrostomy: Children who require feeding either via nasojejunal (NJ) tube or gastrostomy button (G button).
Home health care staff can evaluate your child in the hospital or at home to help in making the decision for home nursing needs and hours.
What services can be provided at home, and what types of staff can provide these services?
Registered nurses are the primary providers of pediatric home health care under the direct supervision of your child's doctor(s). Other health professionals involved in your child's in-home care may include physical and occupational therapists, speech pathologists, medical social workers, nutritionists, licensed practical/vocational nurses, home health aides, and personal care aides.
Today, the range of services provided to children in the home has broadened to include not only rehabilitative care (physical, occupational, speech therapy) but also can include:
Implementing plans of care—including coordinating home medical equipment, pharmacy, and supplies
Personal care (bathing, grooming, etc.)
Administration of prescribed medications and/or therapies—including intravenous nutrition, antibiotics, and fluids
Respiratory support—including CPAP, BiPAP, and ventilator support
Tracheotomy care
Complex medical and surgical care—including wound care and chronic pain management
Assistance with mobility and transfers
Educating, training, and supporting the family—including providing psychosocial support and respite
Hospice care
How are these services coordinated within my child's "medical home?" What role does my pediatrician have?
A medical home is—by definition—an approach to providing comprehensive primary care. Beyond providing direct hands-on care, your pediatrician acts as that medical home. He or she helps you and your child access and coordinate specialty care, other health care and educational services, in- and out-of-home care, family support, and other public/private community services that are important to the overall well-being of you and your child.
All home care services delivered require a physician's order, so your pediatrician plays a key role in writing these orders. Pediatricians also function as leaders of the "team" providing home care services to your child—including prescribing and monitoring necessary care with regard to private nursing, therapies, medication, and durable medical equipment.
Your pediatrician updates the plan of care based on feedback from other members of the care team.
If you experience issues related to insurance coverage, your pediatrician can often advocate on your child's behalf—a good thing to keep in mind!
What is my role—as a parent—in providing home care to my child?
Before a child is discharged from a hospital, his or her caregivers (usually the parents but occasionally the grandparents or other family and friends) are required to receive appropriate training to be able to provide care at home. Make sure you understand the "plan of care" set forth by your child's doctors, and never worry about asking too many questions.
Once home, parents are often the ones facilitating the needed communication between service providers, case managers, and payer sources. You may be called upon to perform high-level functions of home health care—especially when and if gaps in services occur. Some of these functions may include:
Use of enteral feeding tubes
Tracheostomy care
Respiratory treatments and supports (e.g., nebulizers, ventilators)
Wound care
Intravenous line care
Medication management
Cardiopulmonary resuscitation (CPR) training is generally advisable as well. In addition to learning how to render care, it is also important for parents to learn assessment skills. For example, it is important to know not only how to suction or change a tracheostomy tube but also to know when a child needs such intervention.
What are some of the current concerns or barriers other parents have or face related to their child receiving high quality home care?
General access problems: One important limitation parents face is the unavailability of appropriately skilled providers through home health agencies—especially if they live in a rural area. For instance, children with a tracheostomy on a ventilator need the continuous availability of someone who can assess the airway, suction secretions, and replace the tracheostomy as needed. This may be a nurse or a respiratory therapist.
Daytime vs. nighttime home care issues: Parents who must work outside the home often elect to have home nursing during the day, whereas other families elect to have nighttime home care so that they can sleep. However, some home care agencies will not allow the staff to be the only adult in the home and require that a family caregiver be present as well. In some limited areas, providers specially trained in the care of children with medical complexity may offer an additional care option for parents who are employed outside the home or who are full-time students themselves.
Lack of uniformity: Another barrier is the non-uniformity of the type and duration of covered home health services among different insurance plans.
Inadequate payments: When insurance companies, for example, give inadequate payments for the full gamut of services (i.e., hands-on care, care coordination, supervision of care) it makes it difficult for home health agencies to recruit staff and for physician offices to accept children who need home health care into their practices. See the following question/answer for specific details on insurance limitations.
As a result of these barriers, children requiring home health services are at risk of receiving inadequate care at home and experiencing life-threatening disease and other medical complications, serious injury, more frequent readmission to hospitals, higher health care costs, and excessive family burden. Many children must stay in the NICU, PICU, or other pediatric wards and intermediate care areas at a much higher cost because of inadequate pediatric home health care services.
What are some limitations to insurance coverage for care at home?
Medicaid limitations: More than ¾ of all pediatric home health care is paid for by Medicaid. Unlike private health insurance, Medicaid provides a comprehensive home health benefit for children that includes part-time or intermittent nursing services, home health aide services, medical supplies and equipment, and, at states' option, physical, occupational, and speech therapy. The main financing problem that pertains to Medicaid is low payment. Specifically, Medicaid agencies have been criticized for paying home health agencies at rates that are insufficient to provide children with access to home health services. In many states, families are unable to find nurses to fill all of the hours determined to be medically necessary. Plus, many home health agencies simply do not accept Medicaid.
State CHIP limitations: Among states operating non-Medicaid State Children's Health Insurance Program (SCHIP) plans, home health coverage is much more generous than private health insurance. Of the 36 states with non-Medicaid SCHIP plans, only 1 state does not cover home health services. Approximately ¼ of these states impose visit limits, and copayments or coinsurance are rarely charged.
Private health insurance limitations: Many private health insurance carriers and managed care plans, especially those with strong case management programs, will authorize home health care when it is perceived to be a cost-effective alternative to hospital or outpatient treatment. However, authorizations are often for less than the services deemed medically necessary by the child's doctor and the home health care agency. As with Medicaid, authorization delays and retroactive denials are common in the private health insurance industry.
Non-group plan limitations: Children covered in non-group plans seldom have home health coverage. Many of these children's parents seek support from their state's Title V program for children with special health care needs and, depending on the child's condition and family income, may be eligible for gap-filling home health services. It is not unusual for families with inadequate private insurance coverage to terminate employment to gain Medicaid eligibility for their child.
What are some of the key recommendations by the AAP related to financing home care services?
The AAP policy statement, "Financing of Pediatric Home Health Care," recommends the following to improve home health care services to children in need:
Regulatory agencies such as the Centers for Medicare and Medicaid Services (CMS) must exercise their authority and clearly list and define all of the elements of pediatric home health services included in the 10th essential health care benefit (pediatric services) in the Patient Protection and Affordable Care Act.
With input from families and providers, CMS should publish recommendations for the utilization of home health care resources that are appropriate for the medical condition and needs of the child and family. For example, recommendations for services such as physical, occupational, and speech therapy could take into account the distinction between habilitative and rehabilitative nature of the services, the trajectory of improvement, and the age and attention span of the child.
Pediatric home health care providers should be certified by agencies that understand and assess the unique skills necessary to provide competent care to children.
Payments for direct home health care services and for the coordination and supervision of care must be adequate to sustain a skilled workforce of home care providers and to ensure a continuing pipeline of pediatricians who will accept children requiring home care into their medical homes.
CMS should track payments for and utilization of pediatric home health care services to ensure commitment of adequate resources and to identify other opportunities for improving the delivery of home health care, including adequate support of telehealth capabilities.
Additional Information & Resources:
About Dr. Hudak:
Mark Hudak, MD, FAAP is a professor and chairman of the Department of Pediatrics at the University of Florida College of Medicine – Jacksonville and chief of the Division of Neonatology. Within the American Academy of Pediatrics, he is Chair of the Committee on Child Health Financing, Chair-elect of the Section of Neonatal-Perinatal Medicine, and a member of the Task Force on Pediatric Practice Change.
About Dr. Simpser:
Edwin Simpser MD, FAAP is President, CEO and Chief Medical Officer of St. Mary's Healthcare System in New York City, providing a broad range of post-acute inpatient and home care to children with special health care needs. His teaching activities include the Hofstra Northwell School of Medicine where he is a Clinical Assistant Professor of Pediatrics as well as NYIT College of Osteopathic Medicine and the Albert Einstein College of Medicine. He sits on multiple statewide committees to develop policies and programs for children with medical complexity. Within the American Academy of Pediatrics, Dr. Simpser was the former Chair of the Executive Committee of the Section on Home Care and is a liaison to the Council on Children with Disabilities.