Once you've decided that you're going to take on the Katie Beckett application, it's helpful to have some key information as you start. Having very recently been through this process, I know there is a severe lack of accurate and helpful tools out there. I had to gather information from multiple varied sources in order to get this application completed. All of that experience informs the writing of this post, which is what I wish I could have read before getting started. Let's begin with the first steps: prepare yourself, get organized, make appointments, and request medical documents.
First of all, this is more like a marathon than a sprint. This application took me two solid months to complete, and I'm told that was pretty fast. You're going to need a lot of patience, courage, determination, support, and consistency to get this application out the door. Put a note on your bathroom mirror or an inspirational quote on your computer desktop. Find ways to remind yourself of the reasons you're going through this process so that you can see it through.
Secondly, you need to decide on a way to keep your notes & documents organized. For me, electronic is best, so I started a GoogleDoc and shared it with my husband so we could coordinate on moving the ball forward each day. I kept a running list of remaining tasks in order of time priority at the top of the document. Below the task list, I had detailed records of each day's events in reverse date order. Each day had a list of calls I made, emails I sent, questions I needed answered, and what the next step was. With a dozen doctor's offices to coordinate with, this record became invaluable. I have a pretty high capacity for multi-tasking, but I absolutely couldn't keep all of the details in my brain for this application. It's just too much for any person to be able to remember. Choose a way to keep your notes organized, and be absolutely unwavering about using it and keeping it updated. It doesn't have to be fancy; it just needs to be reliably accurate.
You'll also need to have a plan for keeping your documents organized. You will be receiving dozens of forms, reports, and notes. We had a total of 280 pages in our application once it was completed. You'll need a way to keep everything easily accessible and organized. My husband & I utilized a folder in our shared Dropbox account that had subfolders for application forms, supporting documentation, and provider notes. For the provider notes folder, every file that went in it was named with the year, month, date, and descriptive title. If you are a hard copy person, you'll need 10-15 folders and a large accordion to keep them all in. If you use hard copies or save things on your local hard drive, make absolutely sure you perform regular backups. There is nothing worse than having to start over because of lost or damaged documents.
Next, there are likely appointments you need to set up, have, and receive the clinic notes from that will be essential pieces for your application (see list below). Remember that you have to document that your child has a high level of care need, and you'll need documentation that this was recommended from multiple providers during appointments with them. Your highest priority task is to schedule those appointments. It can take weeks to get on their schedule, and additional weeks after the appointment to receive the completed visit notes, so this is by far the part that takes the longest in your timeline. If providers have full schedules, explain to them that you are working on your Katie Beckett application and request to be worked in or notified of the first cancellation.
Request Medical Documents
After these visits happen, check in with the providers' offices weekly to request the visit notes as soon as they are available. Every doctor's office has a different procedure for obtaining these records, so use your notes to keep straight which offices you need to fill out forms for, drive to, or set up electronic requests. If providers ask you to come in to sign a form to complete the order, explain to them that you are doing a large Medicaid application and ask if you can print, sign, and fax/email a scan of your signed form back to them. Once you receive forms, make sure they are properly labeled, filed, and backed up. Keep a quick-reference checklist of documents you're working on and the status of each request.
If you are applying for Katie Beckett because your child needs a lot of therapy, keep in mind that you'll need to show evidence of at least five therapies per week in order to be considered. Therapies can include physical, occupational, speech, feeding, behavioral, and/or music therapy completed by licensed therapists. The pediatrician's prescriptions, therapists' plans of care, and actual dates of therapy visit notes all need to show that 5 or more per week of therapy are being both recommended and administered for your child. My understanding from the P2P archived webinar is that, if the child is prescribed 5 or more therapies per week but that is not actually happening for some reason, the Katie Beckett team will consider those applications on a case-by-case basis. Generally, you don't want to be in the case-by-case bucket. Your goal is to make your application a slam dunk that they can approve swiftly the first time they review it. If at all possible, get your therapies happening at the five or more per week level for at least the 4-6 weeks leading up to when you send out your application.
List of Documents to Request
In order to prepare your application, you'll want to make sure you have documentation from the following:
- Any diagnostic tests applicable (i.e. genetic or blood test results)
- Reports from applicable diagnosing specialists for any of your child's diagnoses
- Developmental Psychological Evaluation (completed by a Child Psychologist or Developmental Pediatrician within the past year)
- Evaluations & plans of care within the past year from Physical, Occupational, Speech, and/or Behavior Therapists
- Notes from physical, occupational, speech, and/or behavior therapy sessions demonstrating a current frequency of 5 or more therapies per week (from up to the past three months)
- Full copy of your child's medical record from their primary care physician (coordinate picking this up with the physician form request, which will be explained in a later post)
- IFSP from Early Intervention (Babies Can't Wait in GA) less than a year old if your little one is under 3
- Individualized Education Plan (less than a year old) from the school system if your child is 3 or over
You can start to see why it ends up being so many pages!
The steps I've described so far are important as you're getting started. Once you've prepared your inner marathoner and set up your organizational systems, the first big task is appointments & documents. This is by far the hardest to coordinate because you're depending on lots of other folks to respond to your requests. While you're waiting on those to come to fruition, you can work on filling out Medicaid application forms, which is where the confusing maze of unclear government paperwork begins.