Sunday, February 8, 2009

Medicaid Waivers

After posting this the other day, I have received a ton of questions about Medicaid Waivers. So ... I figured this was the best way to try to answer questions.

After Payton was born and we found out that she had Down syndrome, I contacted our local Medicaid office to see if she might qualify for Medicaid. The reason for this is that kids with Down syndrome incur a lot more medical expenses than the typical child does and Medicaid is there to help you with what your insurance won't cover. For some families, the costs that are racked up for things like NICU stays and heart surgery are unbearable.

After I contacted our office and got nowhere, I did find out that the only way she would qualify for Medicaid was to base it on our income ... and for us, that did not qualify us.

Fast forward about two years, I was talking to someone I know that has a child with extensive medical needs. This person is also a special education teacher, so clearly she had a little more insight to the system than I did. She sat me down and told me all about Medicaid Waivers ... they are what you apply for when you would not otherwise qualify for Medicaid.

Now I knew that we could apply for the Medicaid MR Waiver, but I also knew that the waiting list was several years long. Then I learned all about the EDCD Waiver ... that stands for Elderly or Disabled with Consumer Direction. Historically, in my state, this waiver was reserved more for the elderly and not people with disabilities, as the title states. In recent years, it was opened up to include people of all ages with disabilities ... and that is where we come in.

We applied for the waiver for Payton and we were approved based on Payton's needs. So ... not only do we receive the consumer directed care, she also now has Medicaid as a secondary insurance ... which BTW is a God send in light of the costs that our insurance has not covered.

Part of the waiver {actually I'm not sure if it is the waiver or if it is Medicaid in general} is that once the child turns three years old, they are provided with diapers and/or pull ups ... as you saw in my post a few days ago. Now, I want to be clear here that you do not get this assistance until the child is three years old. The reasoning behind this is that most typical children have the ability to be potty trained by age three. However, a child with a disability typically does not ... hence the assistance. Note: I've been told by several others that they do not qualify for diapers and/or pull ups until age four, so I'm assuming that it varies by state?

Each state has different waiver programs available. Click here to see a state by state listing of waivers that are available. My best advice is to be persistent ... because often times the person on the other end of the phone has no idea what a waiver even is. That is a sad reality.

If there is anyone in my state that I can help with this, please let me know. I also have friends in states all across the country, so I can refer you to them for help as well. Actually ... it would be nice to have people post in the comments on this blog entry about specifics for their state. There are tons and tons of parents that are in my shoes that have no idea that such a thing exists ... it boggles my mind.

Now I want to answer some of the questions from the original post ...

Man, are you getting Huggies?
Yes, we get Huggies brand. I wonder if this varies depending on the supplier? Email me and I will give you my supplier ... maybe they will ship to you? I'm not sure if there are boundary limits or not. I just called the company that others in my local group use.

Hey, so does a kid just having Ds qualify? And is there an income limit (not that we make a ton at all I just always thought we wouldn't qualify and so never even applied,) also does this help with co-pays etc and if not is it any help before they are 3?
In my state, I do believe Down syndrome is a qualifier in and of itself. However, I also know that this has not been consistent across the counties. Payton's main qualifiers are DS and sleep apnea. No, with a waiver there is no income limit. I sort of explained how it differs from straight Medicaid above. And yes, Medicaid becomes the secondary insurance for the child (given that the child has primary insurance through a parent) and it covers co-pays, prescriptions and anything else that is not covered by primary insurance. In my state, the catch is that in order to use the Medicaid as a secondary, you have to see doctors who submit to Medicaid. Our ENT, for example, does not ... so we do not use it there. So yes, for all of those reason ... it is still a huge help before the child turns three.

I would love more details about the medicaid waiver. Were you guys on a waiting list, or were you accepted right away?
We were accepted right away in our state ... but I think it is only because there were not telling anyone about the waiver, so nobody knew about it and thus nobody was applying. I know now that more people are aware, they are receiving more calls, but I do not think there is a waiting list. I know some states do have waiting lists, but of course it varies.

I know it varies by state, but we applied one year ago, but in our state there is almost an eight year waiting period (if things are moving quickly.)
Is this for the MR waiver, or a different one? Our state's MR waivier waiting list is similar to yours, or maybe even longer.

Who do I contact to see is my son can receive diapers and wipes like this? My son is on Tennessee Medicaid and receives SSI.
You cannot receive them until your child reaches the age deemed appropriate by your state. I'd call your Medicaid office and inquire about it. If you email me, I can give you my supplier for when your child is old enough, but again ... that might be specific to geographical areas. I'm not sure. Oh, and you mentioned wipes ... but wipes are not part of it. ;)

**************

I said it last time ... and I'm going to say it again, because clearly some don't want to listen. This is my blog and if you don't have anything respectful to say, please feel free to click on that little X in the corner of your browser.

Ahem.

Please ... no attacks about us milking the system, because that is just not the case. I'm only saying this because I've heard this before {in general terms ... not aimed at me, per se} and I pretty much think it is ridiculous. Nuff said. ;)

44 comments:

  1. Thank you so very much for the info, I will be making some calls tomorrow!! That comment from the last post came in after my comment so I had no idea what was going on, so of course I felt the need to put my 2 cents in too. Thanks again!

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  2. Since we are a military family (always moving from state to state) and never qualify because of income, I've never officially inquired about waivers because we never live in any state long enough to get through their waiting list. I've heard about this waiver but haven't pursued it. But it sounds like you didn't wait and you qualify for Pull-Ups!! How awesome, Joshua just turned 4 and we use lots of Pull-Ups. Could you email me at wtobiasz @ gmail.com? I'd love to know more and look into it! Thanks for offering and it was great meeting you last night!
    Wendy

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  3. Here in WI, kids with special needs qualify for the "Katie Beckett" program - which gives them Medicaid as a secondary insurance, qualifies them for WIC, and I believe provides generic diapers/pullups at the age of 4. We're not at that age yet, obviously - but I've heard from other parents. AND - that is exactly how the system is set up, for that reason.

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    1. Ditto Michelle. I'm in Wisconsin too (Madison) and have Katie Beckett as well. Our insurance is great but does not cover Birth to 3 so this is why Katie Beckett comes into play. I do not feel guilty using this system! It's there for a reason!

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  4. We can't order out of state, unfortunately, so I guess we're stuck with the Curity brand!

    The other great thing (at least in NY) about getting a Medicaid waiver is continued Service Coordination. Otherwise, we'd just be on our own after Early Intervention. Our service coordinator keeps us up to date on everything, lets us know about any services or grants, keeps on the school to stick to the IEP, and comes to the IEP meetings.

    We also get respite through our Medicaid waiver.

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  5. Hey Bethany, just let the nasty comments run off your back and don't give them the time of day. You are doing what is best for YOUR daughter and YOUR family. These programs wouldn't be in existence if they weren't meant to be used. If no one uses them, they will get taken away and the money will be allocated to something else.

    Hugs to you and those beautiful girls of yours!

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  6. Great discussion. Let's don't think in terms of "penny wise and pound foolish". I have spent many years supporting children in school who were having difficulty. On the difficult days, I thought of it in terms of saving money at some future date. I thought that with the best educational help I could give them they were more likely to stay out of jail and become taxpayers (even in the high tax brackets.) Likewise, if children are provided what they need to be healthy, they will be less a drain on the medical/health insurance system over the course of their lives. An expensive heart repair when a child is young is cheaper in the long run than many, many years of ill health. I would assume clean diapers and happy(er) parents also add to the general health factor. Lastly, I wanted to add that I am an American living in a foreign country working with children. I have been here two years now and I am convinced that the lack of education and high level of poverty here in this country WILL affect the U.S. and indeed it is already. I haven't seen your morning paper, but I am sure we are on the front page! The world is just too small. ALL the children belong to ALL of us.
    Sophie

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  7. I hope anyone who makes comments about "milking the system" understands that you would trade the issues that qualify your child in a second...and be glad to not use the services you pay into. ;-)

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  8. Bethany,
    Thank you for the information. I was looking at the site that you attached and I saw that there is the same program in Florida but is for people with disabilities 18 or older. Do you know if there is another program in Florida like the one that you applied?
    Thank you in advance
    Luciana

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    1. Bethany can you please emIl me the website, I couldn't find it? mommac888@aim.com

      I'm wanting to move to Florida and my son is on a MR Waiver, SSI and Medicaid?

      Thank you

      Mary

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  9. There will always be people who just dont have a clue when it comes to having a child with Ds. There are sooo many health issues. Without help, families would go under. We get help, just in a different way. We dont get the supply of diapers, pullups...formula nothing like that. What we do get, extra health insurance coverage is great! As I stated, we would have gone under without this.

    I have actaully had people ask me, "how much $ does the state give you for her having Ds"? Believe me, I was shocked each time on hearing that question. I assume they were asking about SSI. Carly gets none..as it is based on income too.

    I wonder if people think we're getting a hand out by having Childrens Special Services? (the health care insurance)..hmmm! However, the University of Michigan would not attmept heart surgery the first go round, until we had CSS hlth coverage for Carly. They are the one's who got the paper work for us and had us sign up via a social worker at the hospital. Guess they new that a $300,000 medical bill would likely exceed my hubby's hlth plan allowance per person for a year.

    Joany - Michigan

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  10. Thanks for the info girl- I have been meaning to ask you about this for a while now. I am going to look over the website and papers from VA to see if we could apply for Evie. Do you think we could apply if she just has a Dx of Down Syndrome and no sleep apnea, etc.?

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  11. Interesting all of this. We don't have this in the UK because health care is all free for everyone. Anyone with a child with a disability can get nappies free after age 3. I don't see why anyone would complain about it?? Ah well, I'm happy for you lol! I wouldn't let 'Miss Anon' bother you. She clearly had your children confused and doesn't get it.

    Blessings...
    Lu

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  12. thanx so much for all the info... you rock! Unfortunately, in IL services are income based (at least the ones I have looked into)... but you gave me new hope and I checked out your links (did I mention that YOU ROCK) . I just contacted DSCC (Division of Specialized Care for Children) and it looks hopeful! *fingers crossed* Thankx again. Big hugs to you
    rae (Sam's mom)

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  13. Hi Bethany,
    I understand both sides of this "argument" I do feel that children who are disabled should be able to get Medicaid, regardless of the parent's income. Reason being that children with disabilities generally have more health issues than children who do not have a disability. I have seen families of children with a disability have to file bankruptcy because of the child's medical needs. In this "free" country I do believe that a diabled child should at least be able to get the medicaid waiver so that the parent's do not have to worry about losing all that they own just trying to keep their child alive and healthy. Where I see the "other side" is this. There are many, many people who do not work (most of the times neither parent) who have children and expect to get everything free for them. (whether the child is disabled or not) Here in Texas we have a lot of people who believe that they should be "paid" to have their children. They get free housing, free food, free medical care, free everything and on top of that get a several thousand dollar refund check at the end of the year because they got off their butt for 2 wks during the entire year to go to work. So, the person who posted what everyone perceives as an attack just does not know you. I do not believe she understood that both you and your husband have always worked (until recently when you decided to stay home- good for you!) and paid taxes and have not "expected" anything from the system. I think that it is great that you were able to get Payton on the waiver and I hope you will be able to get Nika on it as well. (if adopted children are eligible?) I am always happy for people if they are able to afford to care for their child(ren) whether the child has a disabililty or not. However, I am glad that there are programs like the medicaid waiver in place in case a family needs that help. I just wish more parents of disabled children qualified for the programs. It is unfortunate when a family "makes too much" to qualify, yet some people who do not even try to make it on their own qualify right off the bat. Anyway, happy that you are able to get it for Payton and hope you will qualify for Nika as well. I would much rather my tax dollars go to help families of disabled children rather than families that are just too darn lazy to try in the world.
    Christy

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  14. I hope you don;t mind that I sent people your way from my blog. My son, Aidan, just got a waiver in October and it has been amazing for us. You answered so many questions here that I had to pass it along.

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  15. Great info, we are in CA and their are several waiver programs available here. It is wonderful that you can get diapers at 3, we did not qualify until 5 though Regional Center will help with the cost after the child is 3(not something we were aware of).
    Heidi & Junior

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  16. Sorry to hear you had a bummer-of-a-comment left on your blog. All I can say is, Rylee is 5 and it's so darn cute when we get a doorbell ring from UPS. "Diapers, Mom? My diapers?" It may or may not be diapers, but she's quite convinced it's for her!

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  17. Hi Luciana ... it seems to me when looking at the FL list that there are waivers available. I'm told there are long wait lists for them, but your best bet would be to check on the different waivers yourself so you can apply and/or see what the wait list is. If you email me, I can give you names of others I know in FL who you might be able to bounce questions off of. ;)

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  18. Amazing information. I would suggest ignoring those that make ill mannered remarks. They often have no idea of the struggles the child or the family goes through every day. My child has the EDCD waiver(VA) and it is truly a blessing...as for milking the system...we work and pay taxes...I see nothing wrong with wanting to use what is available to better my child's chances of living a healthy, as normal as possible life. Maybe rude comment should live a few days in our shoes before commenting. :)

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  19. Hello - I am in VA as well. I wanted to caveat one point on diapers. My daughter has the EDCD waiver. She was approved for diapers before she was age 3. However, I made the argument that she would always been in diapers so regardless of age she should qualify. They agreed and we got diapers when she turned 2.

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  20. Does anyone know if the medicaid becomes your secondary when your disabled child turns 18? We have had medicaid through the waiver for awhile now. We live in Florida. My husband has insurance which has been covering her for medical, so we haven't used the medicaid much. We get the diapers and wipes through the waiver because she is incontinent. I haven't had anything that says what they cover or what kind of medicaid I have. I went down to the medicaid office and keep getting the run around and different info from each person I talk too. I'm just wanting to be prepared because she will be 18 the end of July and I don't want problems with her medications.

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  21. Why am I just finding your blog now?! I adore it! My Harper also has Ds and had her OHS a month ago on Wednesday. Your family is adorable...hope we can be buddies! Here is my blog: http://smiletomyface.blogspot.com!

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    1. Kaiti! I'm from Waunakee originally!!! ;)

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  22. Is any waver in Florida for kids with Ds. I want to move tho fl but having a kid with downs we have to think before we move.

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    1. Yes, there is. My son is 4 years old and has Down Syndrome plus several health conditions.
      First, visit the following link to establish your county http://apd.myflorida.com/area/index.htm
      and then click in your area. You will be displayed with names, phones and email of your contact list for the Agency for People with Disabilities. My region is 7, http://apd.myflorida.com/area/7/staff.htm
      After I emailed the intake coordinator, he contacted me over the phone five minutes after I sent the email! He is great! He provided me with a list of supplies companies for diapers, information about transportation for therapies, and places close to my house when I can switch my therapies, because I travel to Arnold Palmer Hospital, once a week.
      Also, if you need assistance with IEP, Individualized Educational Plan for your child, look for Central Florida Parent Center www.cflparents.org a non-profit organization with trained parents of children with special needs, to provide education, training and empathetic support for FREE, under the Department of Education Program AWARE. Yes, it is real and I am so grateful to find great people in this blog. Please free to contact me if you need additional information! Lupita Jinks

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  23. My son has been on the waiting list for 9 years and this month I just received he is up to receive the waiver. I'm not sure exactly what all this covers . We live in Indiana , do u have any info ?
    Thank you
    Kimkimine@att.com

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    1. I don't know specifics about IN, sorry!

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    2. I'm sorry to hear that 9 years is so very ridiculous. I've been on the waiting list for 5 years for DSPD my son is 15 years old and has Autism. He can't talk and he is still frustrating. I do not believe that we can't seem to get help faster!!

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    3. Upset to hear 9 years! Wow! So wrong. My son is also severe autistic non-verbal. I understand the frustration for sure. We have melt-downs over communication every day. He has been on the wait list for 6 years now. We are also in Indiana and I guess according to your 9 year wait have another few years to go. Very sad...

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  24. Hello!!! I need your advice: Does anyone have the name of a diaper supplier company in Florida that can give me Huggies or Pampers? My little Adrian is 4 years old and has Down Syndrome, he is still in diapers size 6 and he has an atopic dermatitis, so I have to be careful with diaper rash, it gets so bad! The ointment I use is Calmoseptine (wonderful stuff!) and diapers must be for sensitive skin...Any suggestions? Please let me know about your providers even if they are out-of-state of Florida. I can call them and check them out. Thank you!!!! Lupita (email me at mariejinks@gmail.com_

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    1. We used a medical supplier out of VA (Home Care Delivered), I think it was. They used to send us Huggies, but that ended and then we started getting diapers like Cuties and others. They worked fine, really.

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  25. Hello, I was wondering how your daughter was diagnosed with sleep apnea. Did she have an overnight sleep study performed?

    Jeanie

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    1. Hi Jeanie ... yes, you should have a sleep study to properly diagnose sleep apnea. :)

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    2. Thank you! My almost 3 year old son will be going to the Pediatric Sleep Center in 2 weeks, and I'm pretty nervous about it since he probably will not understand (he has autism).

      Jeanie

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  27. This comment has been removed by the author.

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  28. My son Brandon is 15 years old and was diagnosed with severe Autism at the age of 2. He barely fits in pampers size 7. Is there a way toi get free diapers if he receives SSI and medicaid? If so where do I begin the long journey? I live in Utah, any info would be greatly appreciated.

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    1. I am not sure about Utah, I live in Indiana. But, my son is 8 and he gets diapers and washable chucks (underpads for overnight overflow) free delivered to our home monthly. We get them through Medicaid. I would start by calling your medicaid provider and asking about getting provided medical supplies and specifically the diapers. They provided us with a couple different medical supply companies that accept Medicaid. The company we use provides children's and adult sizes. Don't forget to ask about the chucks if your son goes through his diaper onto his sheets overnight. I just called the medical company and provided my son's medicaid information and got a shipment by the next week. I hope this helps! Good luck.

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  29. HI! I live in TN also and am having no luck finding information about the EDCD waiver for TN. I would LOVE some help! Please email me: Christine.nicholson@hotmail.com

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  30. Hi!! If you have any information about medicaid waiver in Florida contact me, my baby is in the hospital and four days ago he lost his medicaid,

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  31. Hi. Please let me know how I can get huggies. The cuties brand doesn't work for my son. The diapers list I got from the dr says, binsons home health, jb medical supply, edge park medical supply, sterling supply, Georges pharmacy... we live in indiana. You can email me lauradubbs@gmail.com. please email me any and all info. I will try to find your email address and email you. I have more questions. I need advice. Thank you for your time. I truly appreciate it.

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  32. Hello from Virginia! I am an autism and developmental specialist, and clients just received the EDCD waiver. Can anyone tell me how this works--do parents get the funds and then spend them, do providers bill Medicaid without parents receiving funds, etc. THANK YOU! Signed, Confused but Vaguely Happy in Virginia

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  33. Hi, when you have a Medicaid waiver, the child gets Medicaid as a secondary health insurance behind the parents primary as insurance, assuming they have that. Medicaid does not pay the family… The family has to see a provider that will submit to Medicaid and then Medicaid will pick up anything that the primary insurance does not pay. Part of this is that they will also cover diapers after age 3… You have to set that up through a home care supplier. Also, part of the waiver is that families get a certain amount of caregiver in respite hours, and the number is based on the child's needs. Caregivers have to fill out a packet of paperwork that is for a background investigation and the caregiver gets paid directly by The state wants hours are submitted. There is also a program called HIPP, where families will be reimbursed by the state for their health insurance premium if they qualify. Google it.

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