Interviewed by Erika Goyer, Hand to Hold Family Support Navigator
Taking your baby home from the NICU can be both joyful – and a little intimidating. This is especially true for families who find themselves going home with oxygen equipment, apnea monitors, suctioning equipment or complicated feeding and medication regimens. Even when your baby is stable enough to go home you still might find yourself wanting the assistance of skilled nursing staff to help you with your child’s care. Fortunately, this resource is available to you. Some private insurers offer Private Duty Nursing benefits for qualifying children. More often this service is offered through Medicaid and approved for families through a state run Medicaid Waiver Program. Click her to find out more about programs in your state.
This month, Christina Aguillon, RN from Encompass Pediatric Services in Austin shares information about in-home nursing and what a Pediatric Home Health Provider does.
What is your title and what was your program of professional study?
I am a Registered Nurse (RN) who has worked in pediatrics since the beginning or my nursing career. Beginning in 1999, I was a Licensed Vocational Nurse (LVN) on the pediatric floor at Scott and White Hospital. Later I transitioned to being a pediatric field staff nurse for a home health agency. The flexible schedule of a field nurse allowed me to complete my Registered Nurse (RN) degree in 2005. In 2006, I became Director of Nursing (DON) of a home health agency and in 2010 I joined the Encompass Pediatric Home Health team as the Clinical Administrator. I’m part of a team of nurses who provide home nursing for medically fragile children.
What services do you provide?
Pediatric Home Health companies provide home care for medically fragile children from 0 – 20 years of age. Pediatric Home Health works more like Private Duty Nursing (PDN) instead of intermittent care which is the case in geriatric home health. When we are talking about PDN, we are talking about skilled nursing care provided in the patient’s home on an hourly basis. This could be as little as 4 hours a day or up to 24 hours a day, depending on the needs of the child. Home nursing is a continuation and an extension of the nursing care that was received in the NICU. Skillful observations, medical treatments, charting, medication management, and caregiver education are just some examples of what skilled nursing can do in the home.
When would a family use your services?
A family might come to us for a number of reasons, but in every case it is because their child needs daily nursing care that goes beyond the needs of most children. See this definition of what it means for a child to be “medically fragile.” The physician must determine the medical necessity for a child to have home nursing care upon discharge from the hospital. This determination is made with the help of hospital discharge planners, social workers, and nursing staff. (Read an article from the American Academy of Pediatrics hospital discharge guidelines for high-risk babies.) Home health nurses can evaluate the child in the hospital or at home to help in making the decision for home nursing needs and hours.
The determination of whether or not a child needs in-home care isn’t necessarily made based on the baby’s diagnosis, instead it’s decided based on the medical fragility of the child. The child is considered medically fragile if he or she has an ongoing or chronic illness which has lasted at least one year or which has required a hospital stay of one month or longer. Generally he or she would require daily medical treatments and monitoring, and are dependent on a medical device or assistive technology.
Some examples of children who would qualify for home nursing care are:
- Premature infants – most premature infants (24 – 32 weeks) have complications that would qualify them for home nursing;
- Respiratory-compromised children –bronchopulmonary dysplasia, traumatic brain injury complications, syndrome- related complications, tracheostomy either permanent or temporary;
- Cardiac-compromised children – syndrome-related complications, congenital anomaly, etc.; Read this free Web Booklet: If Your Child Has a Congenital Heart Defect from the American Heart Association.
- Neurologically-compromised children – seizure disorder, syndrome-related, Cerebral Palsy, seizure control devices;
- Ventilator dependent children
- Gastrostomy – children who require feeding either via NJ tube or G Button. Visit Feeding Tube Awareness for great resources and information.
What would you tell families they should expect at their first appointment or visit?
During the initial visit, our nurse would complete a head-to-toe assessment of the child to determine approximately how many weekly skilled nursing hours the child would qualify for and to answer any questions or concerns from the parents/caregivers. The nurse will then go over the medical history of the child with the parents as well as read the medical chart or notes from the hospital. It is important for the nurse to have a clear understanding of the child’s medical history. During this initial visit the parents also have the option to sign the admission paperwork. This is also the time when the parents would decide at what times during the day or night they would like the nurses to be in the home; shifts are determined by the parents and physician. These shifts are not “set in stone” and can be modified at any time.
The nurse would then create a Plan of Care (POC) and submit it to the ordering physician. Once the POC is approved from the physician, the nurse would then submit the authorization along with the POC to the insurance company. The authorization is usually received back from the insurance company within 3-5 days of submitting, depending on the company.
What can families expect while you are in their homes?
Once a schedule has been set and the POC has been approved, the nurses begin rotation in the home. The nurse(s) working in the home could be a Registered Nurse (RN) or a Licensed Vocational Nurse (LVN) or a combination of both disciplines could be working in the home. An RN case manager, who works in the office, oversees the nurses in the field and builds a close relationship with the families as well (during admission, while building the POC, speaking to them over the phone, during supervisory visits, and recertifications). It is the duty of the RN case manager to ensure the nurses working in the child’s home are oriented with the patient and the patient’s needs. A nurse is also on call 24 hours a day, 7 days a week.
The nurse working in the home attends to all medical needs of the child; however, the specific needs differ from each child. Some examples of skilled nursing would be monitoring vital signs, providing intervention accordingly based on assessment, operate necessary medical equipment that is in place, wound care, removal of secretions by performing chest PT when needed, and charting the progress of the child. Teaching and educating the parents/caregivers is also an important role the nurses play in the home. All skilled medical needs are based on the diagnosis of the child. The nurses and case managers stay in close contact with the primary care physician as well.
What roles do the parents need to play in their child’s care?
The parents are the decision makers for the patient and must ensure the home meets the safety needs of the patient. It is important that the parents understand the POC set forth by the physician. If there is any question of the medical needs or POC for their child, they should ask the nurse or case manager to clarify. Questions are encouraged and the parents should never worry about asking too many questions.
Read A Parent’s Guide to Home Health Services by Marty Barnes
What resources would you recommend for parents who want to find out more about your field?
- Supplemental Security Income (SSI) This federal program provides monthly assistance for children with disabilities. If your child qualifies for SSI, the child would automatically qualify for Medicaid. Vist www.ssa.gov Find out more about SSI for Premature and Low Birth Weight Children.
- Comprehensive Care Program (CCP) The services not normally covered by Medicaid can be covered with prior authorization; this is the program where the majority of nursing hours are covered.
- Medically Dependent Children Program (MDCP) This is a Medicaid waiver program which provides qualified children with services to allow them to live at home. These services could include providing respite for the caregiver, adaptive aids, and supports to enable eligible children to participate in child care. In order to qualify for MDCP, only the child’s income is considered and if the child is accepted into the program, they are automatically qualified for Medicaid benefits. There is a long wait list and is on a first-come, first-served basis. A physician must also agree that your child meets the criteria for admission into a nursing home. The phone number for information and to be placed on a waiting list is (877) 438-5658.
These are just some of the resources available to families in Texas. To find out more about the Medicaid Waiver Programs available in Texas read “Which Waiver Does What?” by Kaye Beneke and Imagine Enterprises.
If you live in another state you will find programs that cover similar services for Children and Youth with Special Health Care Needs.
What sort of licensing and certification do practitioners in your field go through?
In order to work as a nurse for a pediatric home health company, one must be a Licensed Vocational Nurse (LVN) or Registered Nurse (RN). In order to work at Encompass Pediatric Home Health, one must have been a nurse for at least a year. Encompass also certifies their nurses who will be working with ventilators.
Are you looking for a Home Nursing Care Provider?
Questions When Choosing Home Nursing Care
- Will the nurses assigned to my child’s care all have pediatric nursing experience? What is the skill level I can expect from assigned nurses?
- Are the nursing hours scheduled according to the needs of my child and my family? How much input do I have regarding the scheduling of hours? Note: Most nursing shifts are based on the timing of the child’s skilled care needs.
- Does the company guarantee shift coverage? Will I be able to have the nurses that I want? Note: Nursing is usually not a guarantee and there may be unfilled shifts. Therefore, it is important for families to train as many people as possible in your child’s care. Hospital nursing staff or the nursing agency can provide training for family members and friends.
- How long will my insurance company / Medicaid pay for skilled nurses?
- Who is available during and after business hours should I have questions or concerns?
- What happens if I do not want a nurse to return to my home because of personality conflict or problems with the nursing care?
- Will I be expected to train nurses in the care of my child or do the nurses familiar with the care do that?
- Will the nurse be able to accompany my child to physician appointments?
- Will my child be assigned a primary nurse, or do nurses rotate and if so how often?
- How do nurses communicate with each other about my child’s health status and the nursing care goals?
- How will my family’s privacy be maintained?
Need More Information?
Read A Parent’s Guide to Home Health Services by Marty Barnes
Children and Youth with Special Healthcare Needs Toolkits from the National Initiative for Children’s Healthcare Quality (NICHQ) These toolkits help providers and families better support their care and help to develop community-based systems that address their needs.