Many children with medical technology and complex medical needs require private duty nursing, and in most cases Medicaid funds these hours. In many states, the number of hours given to children may not be sufficient to meet their needs. Sometimes, states attempt to reduce hours year after year, practices that have been challenged legally in Florida and Georgia.
It is always worth a try to simply have your doctor write a letter of medical necessity explaining why you need more hours. If you have a good reason, such as you need additional hours due to a new piece of medical technology or so your child can attend school, you may have no trouble increasing your hours informally.
Unfortunately, in many cases your child will not be approved. In this article, I will present the steps required in order to try to increase your child’s private duty nursing hours after denial, as well as the legal reasons supporting them.
Step 1: File notice of an appeal within 7-10 days
In most states, your child will be “awarded” a certain number of nursing care hours, usually per week or per month. You should receive a letter stating how many hours have been approved. The letter should also include a statement that says you have the right to appeal, and give general guidelines on how to appeal.
If your hours have been reduced or the number of house approved is less than what your child’s doctor prescribed, you should appeal. It is critical to file a request for an appeal, typically called a request for a fair hearing, within 7-10 days of receipt of the award letter (check your state’s requirements to know if you have more time). Filing during this time period will allow you to continue receiving the same number of hours you are currently receiving until the time of the appeal. Make sure you save the envelope the “award” letter came in as evidence that you met this deadline.
Your request for an appeal or fair hearing does not need to include much more than your child’s name, ID number, and that you are requesting a hearing because your child did not receive the appropriate amount of medically necessary nursing care hours. Also request that the state send you copies of any documents used to make the decision of how many nursing hours your child should get. Send your letter certified mail or an equivalent delivery service to your state’s fair hearing department.
If your child has urgent needs or requires an urgent increase in hours, request an expedited hearing.
You should be notified within a few weeks that your request was received. In most cases, you will receive a date for your hearing soon thereafter, though some states are backlogged and may not hear your case for months or years. Some states will schedule a brief pre-hearing, evidentiary, or settlement conference, though many states do this by telephone or skip this step.
Step 2: Gather supporting evidence
Your next step is to gather all the evidence you can to support your case. You need to make the case that your child requires additional medically necessary nursing hours. In order to prove the hours are medically necessary, you will need to provide medical records and statements of support from your child’s physicians.
Some of the items you may want to obtain include:
- All records from any hospital stays, especially the Discharge Summary for each hospitalization
Documentation from each ER visit and Urgent Care visit
- Physician’s report from every primary care and specialist visit your child has had in at least the past 6-12 months
- Other medical reports from other types of medical practitioners, such as therapists, behavioral interventionists, psychologists, etc.
- Lab reports for the past 6-12 months
- Reports from any medical studies that have been performed in the past year (sleep studies, imaging, testing, etc.)
- Surgical reports from any procedures or surgeries
- Relevant school reports, IEP, or 504 plan (only as they relate to your child’s health or if you are requesting hours to provide nursing for school)
- A letter of support from the child’s prescribing physician
- Letter(s) of support from your child’s palliative care, hospice, or complex care physician or nurse
- Letter(s) of support from your child’s specialist, especially pulmonology, ENT, GI, and/or Neuro
- Letter(s) from YOUR physician/therapist/psychologist outlining physical or psychological problems
- Current Plan of Care
- Current task sheets, medication sheets, flow sheets, and nursing logs
- Current nursing progress notes, at least one week, and up to 6-12 months
- Current nursing summaries, if your nurses write a daily end-of-shift summary/communication, for the past 6-12 months
- Selected nursing notes or summaries to highlight specific medical events that occurred
- Copies of your nursing schedule
- Copies of your work schedules
You also need to obtain the records the state used to make their decision. While these vary, typically there will be some type of level of care assessment, a brief medical review, nursing notes or other agency reports, and medical reports. These should be provided to you free of charge.
Step 3: Know about EPSDT and Medical Necessity
You need to determine what your child’s Medicaid program is to determine what rights she/he has. If your child receives regular financially-based Medicaid and is under 21, she/he is entitled to what are called EPSDT benefits, a topic I will discuss in detail later on. While the financial threshold varies, most states require you to be very low income to qualify. If your child participates in a 1915(c) Home and Community Based Services Waiver or TEFRA Waiver, your child is also entitled to EPSDT benefits.¹ As long as your child has been accepted into the waiver program, he/she is fully entitled to all benefits, including private duty nursing.
If your child receives Medicaid through the Children’s Health Insurance Program, which typically includes low income through middle income families who pay copays and may pay premiums, she/he MAY be entitled to EPSDT benefits, depending on your state. Similarly, if your child is covered through a demonstration waiver or state-based program, he may or may not be entitled to EPSDT benefits.
It is critical to know whether your child is entitled to EPSDT benefits because children protected by EPSDT have much stronger legal cases. EPSDT is a part of Medicaid law that guarantees children certain benefits, including private duty nursing. It also defines “medical necessity” in a broader way than most other programs. While your state may have its own definition of medical necessity, ultimately it must follow the federal guidelines for EPSDT, which relates that Medicaid must pay for,
Such other necessary health care, diagnostic services, treatment, and other measures…to correct or ameliorate defects and physical and mental illnesses and conditions discovered by the screening services, whether or not such services are covered under the State plan.²
Based on this definition, if your child’s physician diagnoses him/her with a medical condition and prescribes private duty nursing as a “treatment” to “correct or ameliorate” that condition, the state must cover the cost of what your doctor prescribes. The federal government also widely views EPSDT as preventative treatment, meaning that nursing care should be covered if is prevents the worsening of a disability or medical condition.³
Step 4: Know your Medicaid law
In order to make your appeal, you need to know what your rights are. In many cases, states try to circumvent the law because they assume you do not know your rights and will not appeal or take them to court. If you demonstrate that you know your rights under Medicaid law, your appeal will be much more successful.
There are several other important parts of Medicaid law that can help your case. One is Medicaid’s so-called Sufficiency Standard, which states, “Each service must be sufficient in amount, duration, and scope to reasonably achieve its purpose.”4
The United States Department of Justice made it clear how this works with the medical necessity definition from EPSDT in a statement of interest in a Florida legal case:
A state has discretion to develop a reasonable definition of “medical necessity,” but the services provided must be sufficient in amount, duration, and scope to reasonably achieve their desired purpose, including providing treatment “to correct or ameliorate defects and chronic conditions”of EPSDT-eligible children.
Imposing restrictions on the number of hours of skilled nursing care available to a child that are not based on the needs of that child is inconsistent with the EPSDT provisions of the Medicaid Act.5
Another standard problem that some families encounter is that Medicaid does not want to increase nursing care for their child because his/her diagnosis or medical technology is atypical. For example, many programs are designed around children with tracheostomies, and may not know how to handle children with central lines. In this case, you may find Medicaid’s Sufficiency and Comparability Standards useful. They state that your child must receive an equivalent amount of services regardless of the type of diagnosis.6
Finally, it is a common practice for states to shift the burden of care onto a parent or other caregiver. Recent cases and statements by the United States Department of Justice have made it abundantly clear that under EPSDT states MUST provide all medically necessary hours. If parents CHOOSE to help in their child’s care, they may do so, but they cannot be required to provide skilled nursing care. This case law has the potential to grant 24 hour nursing care to any child who requires ongoing skilled nursing services throughout the day, especially any child with a ventilator or similar technology. The relevant statement is as follows:
Defendants cite no authority for the proposition that they can shift the burden of providing medically necessary services, mandated under the EPSDT provisions of the Medicaid Act, to parents and caregivers. Indeed there is none. Although a state may take into consideration natural supports provided to a Medicaid recipient, it may not compel such supports or require parents or caregivers to become skilled care providers.7
Step 5: Anticipate your enemy
It is worthwhile to spend a little bit of time trying to anticipate how appeals typically happen in your state. If you can talk to one or more other families who have gone through an appeal, this can be tremendously helpful. They can tell you the general structure of the appeal, the players involved, and other such valuable information.
It is also extremely important to look at your child’s file, trying to look at it through the state’s eyes, or the eyes of a bureaucrat who has never actually met your child. This may help you to determine what caused them to make the decision they did. You will then be able to focus your appeal appropriately.
You may even want to prepare some lawyer-style questions for the physician or nurse in attendance who made the medical decision. Perhaps he/she is unqualified because he/she has no experience in the medical fields relevant to your child. Asking his/her qualifications and information about how long he/she spent assessing your child’s file may be quite revealing.
In my state, it is common practice for the individuals in charge of the program to discuss how important it is that parents share the burden of care, even though the federal government and case law has made it abundantly clear that this is not true. Be prepared with legal citations you can read aloud to address any arguments such as these.
Step 6: Prepare your case
I highly recommend writing out your entire case on paper, which you can use as notes during your hearing, and/or submit to the hearing officer before or during your case.
The crux of your case is going to be proving that your child requires more medically necessary nursing hours to “correct or ameliorate,” as well as prevent worsening, of his/her medical condition. Develop a case outlining what your child’s needs are, what medical tasks (both skilled and unskilled) are required and how often, and what technologies are used. Support your case with documentation from nurses, doctors, and hospitals. Also note what family needs you may have, such as the need to sleep, work, attend school, care for siblings, and so on.
In most cases, you may need to educate the individuals at the fair hearing on the legal protections of EPSDT and Medicaid law. Preparing some brief statements using legal citations is likely to convince your hearing officer that you are prepared to take the case to court and win, which often helps your case.
Finally, remember that in legal case after legal case, it has been shown that the child’s own physician is the best person to determine your child’s medical necessity. Be prepared to argue that the individuals determining medical necessity for your child were not provided with enough information or did not review enough materials to make the correct decision.
Step 7: Argue your case
Most hearings are a more relaxed version of a court hearing. The state will present their case, and then you will have a chance to present yours, as well as cross-examine any “witnesses” or “experts” the state provides. You are welcome to bring along a friend, relative, advocate or lawyer, as well as any witnesses of your own.
While the state presents their case, I highly recommend taking notes, so make sure to bring lots of paper and pens. It is also extremely valuable to purchase an inexpensive data recorder and record the entire hearing.
Note that a common problem is that a parent becomes overwhelmed by all the inaccuracies presented by the state during their time to present their case. While your first instinct may be to correct all of the state’s errors, this may make your case seem disjointed and unfocused. It is better to simply present your case from start to finish, and after that address any errors or cross-examine state witnesses.
I recommend coming in with several binders and boxes of material. The more material you have, the more likely they are to realize you have a strong case backed up by evidence. I had a full binder of my daughter’s records, a huge expandable file folder of additional materials, and a binder of legal cases and law citations relevant to my daughter’s case.
Also make sure you bring at least two copies of any letters of support, additional medical records, and other documents to help support your case.
One of the most difficult aspects of arguing a case is presenting your materials in such a way that does not alienate the hearing judge or antagonize the state “experts.” Try to make sure your tone is always respectful. Even if you know they have cut your hours simply to save money, it is worthwhile to help them save face by making statements such as, “I don’t believe you received enough information to make this decision.”
Step 8: Await your decision
You should receive a decision within a few weeks or months of your hearing, though some states are backlogged. If the decision goes your way, congratulations! If not, know that the battle can continue. You can bring your case to court if you wish. While I recommend hiring a lawyer, you can argue your own case in court. Also consult with other individuals in your state, because there may already be class action cases pending that you can join. Both Florida and Georgia currently have class action cases pending, and several other states have related class action cases that may help you.