Many newly diagnosed families are unaware of their ability to obtain personal care services under Medicaid (as well as under a Medicaid waiver in some states). This is unfortunate since it can provide almost a life, sanity, marriage, and family saver for so many.
What are personal care services?
Personal care services are services designed to assist those with disabilities with activities of daily living (ADLs). Generally, ADLs include things like eating, bathing, dressing, toileting, ambulation, transferring, and maintaining continence. Of course, even typical younger children cannot perform many of these by themselves. However, it applies when your child is behind the abilities of a typical child and assistance is needed when it otherwise would not be, or in certain cases, the assistance of more than one adult may be needed (such as is sometimes the case with behavioral difficulties associated with some MPS kiddos).
From my experience, there appear to be three main methods of obtaining personal care services through state social services:
Medicaid plan that specifically covers personal care services.
Medicaid waiver that covers personal care services (sometimes under a Home & Community-Based Services waiver, self-directed services, or other type of waiver).
Here is our story of how we were able to get personal care services at a time when it was so desperately needed. In our case, the state Medicaid plan did not specifically cover personal care services (#1), Case was not on a waiver (#2), and so we had to meet the criteria under #3. The evaluation under any of these may be the same, depending on your state, but be sure to consider whether #1 and #2 might apply before you have to reach #3, since they might be easier routes to services. Either way, you will likely still need to follow all or part of the process below (including using the letter of medical necessity or the information contained in it) but the specific process may vary.
Our story: From the time Case was around 2 until around 3 years old, he became increasingly more challenging both skill-wise and behavior-wise. That is a nice way of saying that he:
Could not feed himself in an orderly way and without overstuffing, bathe himself without danger, dress himself, go to the bathroom, groom himself, etc. Transferring was also difficult because of dangerous behaviors. His levels were clearly below that of an average child his age and every ADL was made even more challenging because he:
Had absolutely no sense of danger – he would have run in front of a car, jumped off a building, or stuck a flat hand on a hot stove over and over, laughing all the while he did it. If you chased him, he only ran faster … and laughed while he did so.
Was extremely impulsive.
Had a very short attention span.
Was very hyper and needed to climb and jump off of things.
Could be quite aggressive with others.
Had autistic features where he needed to follow a certain schedule and if there were any variations or he didn’t understand, he would throw raging fits. He was also very repetitive with certain activities and phrases and needed you to behave and respond in the same way each time as well or risk these fits.
Had little sense of his body in space, so he often fell over, knocked himself into things and ran into other children and people.
Case and one of his wonderful CNAs, Erica
I learned that even though many states’ Medicaid programs did not technically cover items such as personal care services and diapers (see prior post on getting diapers through Medicaid), a federal law called EPSDT required that they do so. While this was debatable for some time, there have been a number of cases (example case) on this issue and it seems to be fairly well settled now.
However, I also learned that there is a process, sometimes an arduous process, for making this happen, with back and forth letters and explanations and justifications from doctors to Medicaid to those specific assessment companies, etc.
My goal was to make this as simple a process as possible. As I read the criteria, I could see that, in my opinion, Case qualified. It was simply a matter of making sure that the documentation reflected what I knew to be the case both about Hunter Syndrome and about how it affected Case. Doctors, case managers, and insurers do not know this disease (or any particular special need) as well as the parents do and in addition, do not have the time or the motivation to examine the issues in as much detail.
A plan: So based on what we did, here is a potential plan for trying to obtain personal care services for your child through Medicaid:
1. Find out whether your child might qualify for personal care services either as a direct Medicaid benefit in your state, under the waiver, or otherwise.
a. One option is to Google: “does Medicaid cover personal care services in ______ [state]?”
b. Also, call and speak with your child’s case manager at Medicaid to discuss their need for personal care services and to find out any additional information about the process. If your child does not have case management through your Medicaid insurer, they should. It involves having a point person that is specifically supposed to understand your child, their condition, and their potential needs. Request case management and do not let up until you have it. It can smooth the road for many things like durable medical equipment, diapers, and other services like this.
c. If your child is on the waiver, speak with your waiver case manager about whether it covers personal care services.
d. If all of this points to no coverage for personal care services, don’t despair, if you have Medicaid, a federal program called EPSDT requires coverage if your child qualifies, it just may be more challenging.
2. Research the criteria and process in your state for approving personal care services (although EPSDT is a federal program and ideally, the same standards should apply in each state, each state can have it’s own particular process so this step should not be overlooked). For example, NC has an independent assessment company – that doesn’t change the first referral by the pediatrician below, but it will add an extra step and person to deal with.
3. If the case manager or research reflects a different process than the one below, try to get a handle on what that process is and potentially use the letter of medical necessity or arguments in that process.
4. Draft a letter of medical necessity based on what you know about the criteria, your child, and his or her condition. Here is a form letter based on what we used. You will need to modify it based on your child’s diagnosis and skill levels, not just filling in the blanks with his or her name, but reading it completely and adding/deleting/modifying specifically.
5. Contact your child’s pediatrician and ask for an EPSDT evaluation appointment to review his/her condition and his/her need for personal care services.
6. Provide the pediatrician with a copy of the letter of medical necessity (and offer to send it via e-mail) and ask that she use this as a guide to submitting to Medicaid (if Medicaid is secondary, they will have to submit and be denied by primary insurance first).
7. Call and check in with your child’s pediatrician every week or so thereafter to confirm that she submitted the request and ask whether they’ve received any response (denial, etc.) or request for additional information.
8. Once you know that it has been submitted, call and check in every week or so with your child’s Medicaid insurance case manager as to the status of the claim.
9. Answer any call that comes and be prepared to defend your position.
This was the process we went through and it took about 6-8 weeks to get fully approved for 18 hours/week with no denials. We used it to help Case with after school activities including dinner, bathing, and getting ready for bed.
After it gets approved (hopefully), you will have to work with the local home health provider to interview CNA individuals for the right fit for your child. Don’t be so happy to get personal care services as to accept anyone that you don’t feel comfortable with. Over the course of the 10 months or so that we had personal care services, we had several providers and they all became like part of our family. In order for you as a parent to fully get the benefit from the services, you have to be comfortable with them since you are trusting them with your child’s skills and safety.
Just as examples, here are a few Medicaid personal care services webpages. Remember, even if a state’s Medicaid plan does not specifically cover personal care services, it can still possibly be covered under a waiver or EPSDT requirements.