Getting skilled nursing care for your medically fragile child

Has your child recently been diagnosed with a condition that requires a certain level of medical care at home? Does he/she need medical equipment at home or need medical intervention throughout the day? Does he or she need care throughout the night? Is this beyond the scope of most typical babysitters? If so, it is possible that your child could qualify for skilled nursing care either at home or at school.

Skilled nursing care at home

Does your child have a medical need?

First, let’s talk about skilled nursing care at home. Perhaps the best way to start is to talk to your child’s pediatrician about whether he or she feels skilled care is necessary for your child. A specialist may also be a good person to speak with about this. For instance, if your child is diabetic with fluctuating blood sugars, perhaps the endocrinologist is the one with whom to discuss the NEED for skilled nursing. Remember, most often it will still be the pediatrician who will need to write the letter of medical necessity but specialists can help you determine if a need is there. They can also provide supporting documentation. Any extra documentation helps!

You should be aware that doctors and providers are not always informed about skilled nursing benefits in state programs or within insurance policies. You might need to find that information on your own. What you are discussing with the doctor is whether there is a need for skilled nursing. Once you have established there is a need you will need to find out whether this type of care will be covered by your insurance, Medicaid, or a program such as respite care.

Funding for skilled nursing care:

1. Private Insurance

If you have private insurance through your employer check your skilled nursing benefits. Call that number on the back of your card and ask them about skilled nursing benefits. Many insurances will cover a certain number of skilled nursing visits. Typically, these refer to a nurse coming out to do a “check” on your child which takes about 30 minutes or so. BUT this is not what you are looking for. You want to know whether these “visits” have a maximum number of hours. Sometimes they do not, which means the nursing “visit” can actually be an entire eight-hour nursing shift. If you have this benefit, consider yourself luckier than most! This benefit is hard to come by!

The next step is to obtain a list of pediatric nursing agencies in your area and start calling them.

Ask the insurance company to give you a list of pediatric skilled nursing agencies or go on the plan’s website. I often find the websites lump home care into one big group and you often don’t know whether they provide skilled care or other types of home care. You may end up needing to call each one individually. It’s painful but the only way to know exactly what each agency offers. You may also want to ask other parents of medically fragile children in your area about their experience with nursing to help narrow your search. IWhen you find an agency it is best to ask the agency to verify the skilled nursing benefit with your insurance to avoid any misunderstanding about coverage. You do not want to foot that bill!

2. Medicaid

Regardless of whether you have a skilled nursing benefit with your private insurance, the next question is whether you have Medicaid for your child. Of course, this is going to depend on the state because not all states will automatically qualify medically fragile or disabled children for Medicaid (this will be discussed in a future post).

If your child has your state’s Medicaid plan, you will need to find out the skilled nursing benefit for Medicaid (if one exists) and what the approval process is. I strongly recommend looking for a social media group in your area for medically fragile children if you have moved to a new state. I find parents are very helpful and are happy to point you in the right direction since each state’s process is different.

If you are fortunate enough to have skilled nursing benefits available through both your private insurance and Medicaid, working with a nursing agency that participates with both will maximize your benefits. If you can only access Medicaid (i.e. your private insurance doesn’t cover) you will need to choose an agency accordingly. Be aware that some states also have various different Medicaid plans,. You will need to be specific about which plan you have when speaking to the nursing agencies.

3. Respite Program

A third option for obtaining skilled nursing care is a respite program. I don’t have much experience with this avenue so unfortunately, I can’t offer much useful information. Respite programs vary tremendously and the number of hours may be very limited since they are in place to give caregivers a break from time to time (“respite”). They are not in place to provide routine care. You may also need to find your own caregiver with these programs. Even with such limitations, it’s always worth exploring.

The Letter of Medical Necessity

A letter of medical necessity will almost always be required when requesting skilled nursing care. It is the key to having skilled nursing approved. It must be written by the pediatrician or specialist, but it is in your best interest to provide the doctor with as much information as possible. Remember, insurance companies and Medicaid don’t know your child the way you do. The letter of medical necessity must paint a clear picture of your child. It should easily convince the person reading it that a skilled nurse is needed to provide care.

You can help your child’s physician write this crucial letter by providing him/her with the following information:

1. What are all of the medical interventions you do for your child daily? How many times must you do these tasks?
2. What will happen if these interventions are not performed (i.e. your child needs to be catheterized because otherwise he/she ends up with frequent urinary tract infections).
3. Has the introduction of a particular intervention led to improvement of your child’s condition (i.e. strict fluid monitoring has avoided dehydration and resulted in less frequent seizures)?
4. Is your child hospitalized frequently? How often? When was the last hospitalization?
5. How many medications does your child take? Are any of them injections or administered rectally? Is clinical judgement required to administer any “as needed” medications?
6. Is ongoing assessment of your child’s medical status needed throughout the day that cannot be done by a layperson?
7. What medical equipment does your child require? Such equipment includes pulse oximeters, CPAP machine, oxygen, suction machine, breathing treatments, feeding pumps.
8. Does your child have surgical or wound sites on his/her body that need monitoring? These include G-tubes, tacheostomy site, wounds, etc.
9. Is your child 100% dependent on someone for his/her care? Is your child wheelchair-dependent? These are just additional facts that can help convey the care involved with your child even if they do not necessitate skilled care.

Write down as much as you can and let the physician determine what requires skilled care (by a nurse) vs unskilled care. Many pediatricians will also welcome letters written by you if you feel comfortable doing this. Don’t be afraid to ask.

1:1 Skilled nursing care at school

Skilled nursing (1:1) at school is tricky. There are states in which the skilled nurse from home (funded by private insurance and Medicaid) also attends school with the child. There are also many states (i.e. New York) in which insurance, particularly Medicaid, will not fund the skilled nurse during school hours. The school district must then provide the skilled nurse during school hours. This means you must have a discussion with your child’s school district and have it included in your child’s IEP.

All of the reasons in your Letter of Medical Necessity (see above) apply in school as well. The difference is, if a school nurse is present in the building you will need to make a case for why your child needs a 1:1 nurse. These reasons will depend on a variety of factors such as the severity of your child’s condition and possible emergencies that can arise, the size/number of students in the school, and how often your child needs care or interventions throughout the day. Also consider whether your child will need the nurse on the school bus.

Many times school districts will offer a 1:1 aide instead due to cost. Nurses are obviously more costly. If skilled interventions are needed and the school district proposes an aide, you must ask the school district how the person’s skills will be verified. Remember, your child is entitled to attend school safely so trust yourself and ask for what you feel is best for your child. You can always bring a letter of medical necessity from your doctor to help the school understand your child’s needs.

Skilled nurse does not always equal skilled nurse

Skilled nursing has been the key to our son’s health at home and at school for almost eight years now. You can imagine how incredibly grateful we are to have this benefit available. If you are new to nursing I want you to be aware that nursing care can vary drastically from state to state, agency to agency, and nurse to nurse. Overall there is a nursing shortage so they are not easy to find. Even though candidates might be limited you should always ask to interview the nurse. Each nurse’s skills will vary based on his/her past work experience. Ask questions about their previous jobs to get a sense of the kind of patients (and ages) they are comfortable with. You may need to meet a few nurses before you find the right fit. No one is perfect, but always trust your gut. Mommy (or Daddy) knows best!

Good luck to you and please feel free to email www.specialneedsgps.com with questions related to nursing care. We have experience with Pennsylvania and New York but have also researched other states on the East Cost.