Tuesday, February 7, 2012

Katie Beckett (Deeming Waiver) Checklist

**The following post is documentation of a personal experience with applying for the Katie Beckett Deeming Waiver in the State of Georgia, Barrow County. This information is given only as an example and is in no way a guarantee of like experience. The author is not a representative of the State of GA, Barrow County, or DFCS. The forms and procedures listed can (and probably will) go out of date without any note on this blog.**

**Updated 3/17/2012**

I wanted to take a minute and reach out to those parents (in Georgia specifically) that are starting to navigate the process of seeking government aid for their child with Autism (or other disability). I am by no means finished with the road I'm on but, knowing the work it took even to get to this point, I want to help others on their way.
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Brief History (taken from CHOA Deeming Waiver Information)
The Deeming Waiver is a type of Medicaid that helps to cover the costs of medical treatment and therapeutic services for children with physical or developmental disabilities. Before the Deeming Waiver, the government would subsidize care for a disabled child ONLY if the child was placed in a state institution. In 1981, the parents of Katie Beckett fought to get financial assistance while caring for their child at home. Now, the Deeming Waiver is helpful to families who make “too much ” to receive financially based Medicaid, but who need expensive services for their special needs children. 
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Back at the beginning of January, I shared this post on my family blog about my son Alexander's diagnosis of Autism and some of the resources we were looking into. I included a link to the CHOA Deeming Waiver Checklist I was using (in addition to some other links). While that checklist has a lot of good information (you'll see it peppered through this whole post), it is also sorely out of date (which I had a suspicion it might be). I ended up turning in one form that wasn't even needed and leaving out 2 forms that were needed in Alexander's application. So, after all of that, our new case worker (who wasn't assigned to us until I made the initial application) sent me a new checklist and the forms I was missing.

The following checklist can be found online at http://dhr.state.ga.us by searching for "Katie Beckett Cover Letter." The cover letter itself is a .doc file that will instantly download when you click on it (at least that's what it did for me). Here's that instant download link: Georgia Department of Human Services: Katie Beckett Cover Letter. All of the forms listed in the checklist can be found by visiting http://dhr.state.ga.us and searching for them by name/number. I've also linked each form name to its appropriate instant download page.

(Don't click the links in the checklists if you don't want the forms to download right away.)

q  Medicaid Application, Form 700, (answer questions as if your child was completing)
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Other required forms/items (from the Verification Checklist):
□ Psychological (this is the report you got/will get from the specialist who gave/will give your child his/her diagnosis of Autism) **updated**
 Health Insurance Information Questionnaire, DMA 285 (I was unable to find a link for DMA 285: see tips below)
□ GA Dept of Human Services - Notice of Privacy Practices (one for each household member over age 18)

Other required/helpful documents:
 Copy of Child's Birth Certificate
 Copy of Insurance Card - Front and Back
 SSI Rejection Letter (see tips below for more info)
 Copy of Child's IEP/IFSP (if applicable)
 Therapy Notes?
Our case worker asked for Alexander's therapy notes to be sent with the new forms. He's in the Special Needs Public Preschool Program and he gets speech therapy there but he doesn't go to private therapy yet. So I just made copies of his school and ST progress reports and put those in as the notes. (I'm actually not quite sure if this is what they're looking for but it's all I have so we'll see.)
 Social History?
I additionally completed and submitted a Social History for Alexander because it was listed on the CHOA Deeming Waiver Info Checklist with instructions on how to write it. I don't actually know if this was necessary because it's not mentioned anywhere on the paperwork I got back from DFCS. (I'll try to find out from my caseworker if I did that work for nothing and update this post when I know.)

A few more tips:
**update** I don't think I made this clear before, although you may already know and if not you'll find out quickly: Your regular pediatrician will not be able to give you a diagnosis of Autism. Find yourself a Neurodevelopmental Pediatrician, Developmental Pediatrician, or Developmental Psychologist. These are the people who CAN make that call. (There may be other specialties that also have that "power" but I don't know what they are.)

- Swing by your local DFCS office to pick up the Medicaid application (they were in a rack by the door when I went). I included the link above in order to give you options but getting one from an office is really easier in the end. The application I got from the Barrow County DFCS office also contained the Health Insurance Information Questionaire, DMA 285 and the Notice of Privacy. You will need a Notice of Privacy signed by each household member over the age of 18 (so get extras if you need them). You also might want to try asking the rep at the desk if there is a "Katie Beckett Packet." The girl I asked didn't have a clue but maybe you'll get lucky and find all the paperwork I've listed laid out for you.

- Once you have your copy of the Medicaid application, write Katie Beckett/TEFRA at the top.

- To date or not to date? I've read in a couple of places online that you shouldn't date any of this paperwork before you turn it in. I then proceeded to forget and dated all my signatures. I haven't heard from my case worker if this will be a problem yet. I'll let you know what I find out. **update** Ok, what I found out: Didn't matter in my case. The caseworker never came back and said I needed to start over because I dated everything wrong, and we now officially have our APPROVAL (w00t!).

- The Verification Checklist (item #2 above) isn't really for you! It's part of the contact letter you'll receive from DFCS if you're missing things from your application. Not all the lines apply to all applicants. Here's an actual scan (with personal info cropped out) of the checklist they sent me after my initial application:

As you can see, I wasn't required to submit most of the things on that list.

- The instructions pages (for forms 706 and 6A) aren't for turning in, they're for instruction! Make sure you look them over carefully and use them to double check your work. It's just always good to read the instructions!

(Taken and paraphrased from CHOA Deeming Waiver Information.) The Katie Beckett Waiver is not based on your family's income (it's based on the assets of the child only). So, you first must prove that you do not qualify for the Supplemental Security Income (SSI) Disability - Medicaid program which is based on your family’s income. The first step is to apply for SSI through your nearest Social Security Office. You may call them at 1-800-772-1213 to begin the application. If your child receives SSI, and, thus, Medicaid, you are finished at this point, as Medicaid provides the same benefits as the Deeming Waiver). If your child does not receive SSI and Medicaid through this program, SSI will send you a denial letter. This denial letter becomes a part of your Deeming Waiver Application (see my scanned Verification Checklist above). Make sure you do not lose it!  - - - My case worker also said that if I hadn't applied for SSI yet that he would have to do a budget to find out if I was eligible for SSI. So it's my understanding that you can do the needed work through DFCS without calling SSI first. But, that's not how I did it so I can't recommend that way. The SSI application process was all over the phone; and I got my rejection letter fairly quickly.

- If you have an appointment coming up with your child's Developmental Pediatrician (or whatever specialist gave/will give you the diagnosis) take your Katie Beckett paperwork with you. Maybe your doc won't be quite this helpful but ours took the papers out of my hands and filled out most of the physcian's parts. I still had to take them to be signed by Alexander's pediatrician (PCP) but it doesn't really matter who fills them out. And let me tell you, the pediatrician was about to burst with relief when I presented the DMA-6(A) already filled out, with his signature lines highlighted. He said most regular pediatricians don't really know what to write on those forms (which is exactly what the Dev. Ped. said while she was filling them out).

- Related ^^^ If you didn't already know this (cuz I sure as heck didn't) you can schedule an appointment with your child's doctor just for paperwork. Our pediatrician's office calls it a consultation. I much preferred doing this and leaving my boys with a babysitter rather than trying to finagle signatures out of the doctor during a well-check or something. I assume most doctors prefer this as well.

**updated** Lastly, and yeah, probably leastly, It wouldn't be a bad idea to have a friend look over all the paperwork before you send it in to make sure you signed everywhere it says "Parent or Guardian," "Primary Care Giver," etc. I discovered it wasn't a big deal in the end but I did receive a letter from the Katie Beckett Review Nurse with a copy of a form I'd forgotten to sign. Which I promptly signed and put back in the mail.

**updated** See my Katie Beckett Continued post

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I really hope this post will help someone out there who's trying to work through this process. Please remember that I'm not an expert and your experience may be quite different from mine. I don't even know if we're going to get approved based on what I've sent in and we might have to try again. (**updated** We got our approval!) I'm going to work at keeping a record going on this blog so that people can benefit from our example (both what to do and what not to do) as much as possible.

Good luck!

22 comments:

  1. Thanks for posting this. Ok.... I think I am ready to tackle this. I have been putting it off (no time, intimidated by the paperwork), but after reading your post, I mustered up some confidence. Wish me luck!!!

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  2. I'm so glad this post helped you get started! Your comment reminded me that I need to post an update on this subject. Best of luck to you as you move forward!

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  3. thank you so so so so so much. this is unbelievably helpful.

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  4. Most of our daughters expenses are covered by our private insurance. However she has just begun weekly speech therapy visits ( feeding therapy) and monthly physical therapy... none of these are covered by our insurance. So we are thinking of looking into the deeming waiver to help. She received one; ss check for her time hospitalized but was then denied based on our income. I wanted to ask you how much the waiver covers. ? I read somewhere 20% and while anything is helpful that doesn't seem like it will put much of a dent in the overall cost for us. Thank you for your help!

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  5. Most of our daughters expenses are covered by our private insurance. However she has just begun weekly speech therapy visits ( feeding therapy) and monthly physical therapy... none of these are covered by our insurance. So we are thinking of looking into the deeming waiver to help. She received one; ss check for her time hospitalized but was then denied based on our income. I wanted to ask you how much the waiver covers. ? I read somewhere 20% and while anything is helpful that doesn't seem like it will put much of a dent in the overall cost for us. Thank you for your help!

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    1. For us, speech/feeding therapy is covered entirely by the Deeming Waiver (we have a high deductible health plan and would have to pay most things out of pocket up front.) The waiver gives us up to 8 hours a month of speech/feeding therapy. It also covers my son's weekly occupational therapy. He doesn't have a PT but I imagine that would be covered as well if needed. Of course, I'm not a government representative, and the waiver may be different where you live but in my experience it was worth the paper work to get the speech therapies covered. We've still had to pay for certain specialist visits out of pocket but therapies haven't been any trouble to get the waiver to cover completely. If you're still not sure you want to go through the hoops, I would recommend asking your child's therapists (or their billing department) directly if they have any experience billing Deeming Waiver Medicaid. My son's therapist was able to tell me what the Waiver covers better than any DFACS rep I talked to. I hope this helps. Good luck!

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    2. You probably have your answer already, but when we had private insurance + the Deeming waiver, the waiver covered EVERYTHING that private insurance didn't. It covered our copay expenses for therapies, copays and deductibles for office visits, etc. Basically, when our son had a doctor's appointment, medical procedure or therapy visit, we paid nothing because Medicaid picked up everything that our insurance didn't cover. Medicaid is always secondary, so the provider will bill the private insurance first and then Medicaid, but it was a lifesaver for us because it significantly decreased our cost burden.

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  6. HI - Thank you for posting all this! I'm kind of confused on the DMA-6 forms because it says that my daughter would have to be recommended for in-house care to be eligible for this but above you said you don't. Am I missing something? I just don't want to go and fill out a million papers only to find out she isn't eligible :) Thanks!

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    1. Oh I hope I'm too late with this reply and you're already ahead and done with the paperwork! (But sorry it took me so long, and if not...) The recommendation for care is done by your pediatrician. I'm not sure if I entirely understand your question but the purpose of the Katie Beckett waiver is to get medical aid for children who 30-40 years ago could only have gotten that medical aid by being institutionalized. Katie Beckett's parents refused to do that and asserted that they could give her just as good and even better care (for less money) in home. The long and short of it is, if your daughter requires services of any kind (specialists, therapies, accommodations, etc.) the waiver is there. If your daughter has diagnosed autism, the odds of eligibility are higher than if she hasn't been diagnosed. Good luck!

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  7. Hello Amy,
    Thank you for posting all of this! I am trying to help my niece get services for her son. I read somewhere that you have to apply for and be declined by SSI first. Is that correct?

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    1. Kelly,
      I didn't have to but your niece's experience may be different. I went through the SSI process and was declined but then when I submitted my Katie Beckett paperwork, I was told that wasn't necessary because the KB Unit runs the numbers again anyway. I asked 2 or 3 times why they would need to do this if the KB waiver is awarded based on my son's assets only and they said it was standard procedure to check if we would qualify for SSI. When I said I already was declined by SSI and they shouldn't need that info again, they just seemed confused. So obviously I would've skipped the SSI phone call if I had known I'd would just have to go through that interview again with KB.
      Good luck to you and your niece and her son!

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    2. Amy! Thank you so much! It's good to know that this is still up to date! You are an angel for keeping it that way!

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  8. I'm curious how long it took you from application to approval (congrats on approval, by the way!)? My son had the Katie Beckett waiver several years ago and then we moved out of state. We are moving back to Georgia in the next few weeks and I'm hoping the process will be more of a renewal instead of needing to start all over but I'm not sure. I know you probably have no idea either, which is fine, but can I ask how long the process took before you got approved? We are in NY now and have been waiting for almost 7 months since we applied and still have no answer. I am just praying GA isn't taking that long! Thanks for your help and for putting together this great list! The whole application is daunting, to say the least.

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    1. It's my understanding that there is a 90 time limit on the GA KB unit getting you an answer. Like, once you've applied, they're on the clock and as long as you keep up with the deadlines for any additional paperwork, they have 90 days to come to a decision. Of course, my renewal didn't go quite as smoothly because they were transitioning computer systems at the time, but I didn't have a break in my coverage, they just kept coming to me with stuff they missed. I hope everything with your move and your renewal goes smoothly! Good luck!

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    2. Thank you so much! That is very helpful and great to know! I have been SO frustrated with the attitude here in NY that "you have 10 days to complete this and get it back to us" but we can take however long we want to get our part done. It's very reassuring to know they do have deadlines for themselves in GA. :-)

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  9. Thank you for sharing your experience and for keeping updated your blog. My pediatrician suggested contacting an agency that does consults for the KB Deeming Application Process, which cost $900. You have the option to draft your paperwork and pay for an initial consult that cost $100.

    I have a question; did you submit the social history letter? Was it needed? It can be a very time consuming and emotionally overwhelming to go over my daughter’s medical history (she has 2 surgeries and lots of MRIs tests) By any chance, do you have any samples of the Pediatric DMA-6(A), Physician’s Recommendation for Pediatric Care and TEFRA/Katie Beckett Medical Necessity/Level of Care Statement, DMA Form 706 that we can use as reference when talking with our pediatrician?

    Thank you again for your tips and insight!

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    1. I did submit the social history letter, but then I was told it was not needed. I wouldn't worry about it. If the KB unit needs more information from you, they will send you a formal letter asking for it.

      As far as samples go, I don't have anything to offer but the links I've listed above for the forms. I've been meaning to make another update to my story with renewal information, etc. and I'll consider including more specific paperwork examples with that.

      I hadn't heard of consulting agencies for the KB application process, although I guess if they get results it could be worth it. The only other advice I might give you is; if your current pediatrician doesn't have the time, means, or know how to help you fill out these forms - you *might* want to find another pediatrician who does. Between our neurodevelopmental pediatrician and my son's PCP, I had guidance along the way of how best to represent our case in the paperwork. Essentially it's a matter of experience. Both of these doctors deal with autism/other special needs patients on a weekly/daily basis and are totally familiar with the KB forms. I'm not sure what your daughter's diagnosis is, but I use www.myautismteam.com from time to time to vet out potential PCP's and specialists. I guess my point is, I'd hate to see you spend hundreds of dollars when a good PCP will do a paperwork consult free of charge as a matter of course.

      Good luck!

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  11. Thank you for the follow up and additional advice. I also think that—at some point—we need to find another pediatrician, but honestly I am not sure if it would be good to change it since we are in the middle of the application process. I felt very frustrated and helpless, and I took it as an indication of a lack of sympathy. I hope we can get the KB approval and change later to a new practice. Would you mind sharing the name of your PCP and neuro-developmental pediatrician? Would you recommend them?

    Best!

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    1. Not sure where you're located but we see Dr. Thomson at Hamilton Mill Ped. and Dr. Talboy at Marcus Autism Center. I would definitely recommend both of them.

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  12. Thanks so much for this post! We are just beginning the process after DROWNING in speech bills not covered by insurance. I did find a link for the Health Questionnaire:
    http://www.deemingwaiverhelp.com/uploads/1/3/2/9/13291379/georgia_dpt._community_health_thrid_party_liability_form_285.pdf

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  13. Thank you so much! Just beginning this process after DROWNING in debt over speech bills not covered by insurance. I did find a link for the Health Questionnaire:
    http://www.deemingwaiverhelp.com/uploads/1/3/2/9/13291379/georgia_dpt._community_health_thrid_party_liability_form_285.pdf

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