Home care for children and teens

You don't necessarily need to depend on inpatient medical facilities to meet your child’s healthcare needs. If your child’s condition allows, they can get the quality care they need at home and avoid the inconveniences of hospitals and rehabilitation facilities. 

What is home care? 

Home care encompasses a wide range of health, social, and rehabilitative services for recovering, disabled, chronically ill, or terminally ill patients. Patients and their families choose home care during different stages of their illness, such as after an extended hospitalization or intensive treatment.

How do I know if home care is right for my child? 

Choosing home care services can be an emotionally difficult decision for parents and their families, who may question whether they're capable of fulfilling their children’s needs.

Where should I start?

Gather useful information about the services available and how to access them. Work with your healthcare team (social worker, nurse, and doctor) to discuss and assess your child’s needs. You can start the process of using home care services by: 

• Talking with your child’s doctor: Speak with them directly about the types of services that may be needed at home. They must initiate a referral to an agency with a doctor's order for home care services.
• Talk with a social worker: Social workers initiate the referral and arrange for home care services with the doctor. They often use the agency they're most familiar with, so discuss other agency options if you wish. If the home care services are ordered following a child’s hospitalization, typically the hospital social worker initiates contact with the home care agency and coordinates services with you, your family, and your doctor.
• Contact your insurance company: Ask your insurer for a list of participating providers. Remember that some insurance companies require pre-authorization of services. If your insurance company requires pre-authorization, verify that it's been notified about the home care request.

How do I talk with my doctor about home care? 

Discuss with your child’s doctor the types of services you think you'll need at home.

To make an informed decision, you'll need to be able to answer the following questions to help determine how many hours and what type of care is needed: 

• What type of care does your child need during the day and at night?
• How many hours can the family or caregiver assist the patient on average?
• What types of assistance can the family or caregiver provide (cleaning, cooking, laundry, assistance with walking)?
• How many flights of stairs does the patient have to walk to get to the bedroom? The bathroom? 

How can I find a home care agency in my area? 

The National Association for Home Care and Hospice (NAHC) provides helpful information about home care, including an agency locator, which contains a comprehensive database of more than 20,000 home care and hospice agencies. Your state and local health departments should also have a registry of licensed home care agencies in your community. 

In addition, a Blood Cancer United Information Specialist can help with your questions and concerns.

Types of home care 

You have many options when it comes to choosing the type of home care service you prefer for your child: 

• Registered nurses (RNs) provide skilled services that can't be performed safely or effectively by nonprofessionals, such as dispensing drugs, administering wound care, changing dressings, and delivering intravenous fluids
• Licensed practical nurses (LPNs) provide basic bedside care, such as taking vital signs, temperature, blood pressure, pulse, and respiration. They also prepare and give injections, monitor catheters, apply dressings, treat bedsores, and give alcohol rubs and massages. LPNs don't dispense drugs.
• Physical therapists work with patients to restore their strength and mobility through exercise, massage, or other methods
• Social workers assess the psychosocial factors affecting patients and provide counseling, serve as case managers to coordinate services, and assist in identifying available community resources
• Speech language pathologists work with patients to restore speech by retraining them in breathing, swallowing, and muscle control
• Occupational therapists assist patients who have disabilities that prevent them from performing activities of daily living (ADLs)
• Nutritionists provide counseling about the benefits of a dietary assessment and guidance to help in managing your child’s illness
• Home health aides (HHA) and home care aides (HCA) provide hands-on assistance with ADLs, such as bathing, getting out of bed, walking, toileting, and dressing
• Homemaker and chore workers help with light household chores such as laundry, meal preparation, cleaning, and shopping
• Volunteers provide a range of services, depending largely on their training and experience. Services can include transportation, companionship and emotional support, household chores, and personal care.

How can I get home care services?

You can get home care services for your child from the following: 

• Home health agencies provide a range of services, instead of one or two specialized services such as nursing care
• Homemaker and home care aid agencies employ homemakers and home care aides
• Staffing and private-duty agencies generally provide nursing, homemaker, and home care aides, as well as companion services
• Pharmaceutical and infusion therapy companies deliver drugs, equipment, and professional services for patients receiving IV or nutritional therapies through tubes
• Durable medical equipment and supply dealers provide and deliver respirators, wheelchairs, walkers, catheters, and wound care supplies to homes. Typically, these agencies don't provide physical care for patients.
• Registries are employment agencies for home care nurses and aides that match providers with clients and then collect a finder's fee
• Independent providers refer privately employed home care workers, including nurses, therapists, aides, homemakers, and companions

Who will cover my child’s home care costs?  

Look into the following options to cover your child's home care costs. Open each section below to learn more.