When you have a special needs child, fighting for them becomes your life.
And it gets tiring, but they are so worth it.
After Payton was born, we had her evaluated by Early Intervention. It was decided at that point that she would get physical therapy. I was not necessarily happy with just physical therapy, but I wasn't sure my voice would matter.
And so we went with it.
When she was about nine months old, our geneticist told us that Payton needed to be getting speech therapy services from the county. So I used my voice and asked for it ... and we got it.
Up until she was two years old, physical therapy and speech therapy were the services that we got from the county. We were told we couldn't have more than two services and that if we wanted occupational therapy or an infant educator, that we would have to drop one of her other therapies.
Why does it work that way in my state? I have no idea. But it sucks.
I can't remember exactly when ... perhaps after her first birthday ... but we began taking Payton to see Pat Winders at the Kennedy Krieger Institute for physical therapy. Pat is an amazingly talented physical therapist for kids with Down syndrome. She also wrote the book Gross Motor Skills in Children with Down syndrome and we were just very blessed to have her for a therapist, even if just for a short time before she moved on us.
In light of the therapy with Pat and the fact that Payton walked at 17 months, we decided to drop her physical therapy when she was 2 years old. The only reason we did that was so we could pick up occupational therapy to help with any sensory issues she might have had since she was a horrible eater.
The fall after she turned 2, she began preschool and all of her therapies went away. The thought process is that she would get her therapy through what they did in class at school.
I wasn't so sure about that, but my voice didn't matter. We are very blessed to have her in a fabulous special needs school with an even more fabulous teacher, but I still wasn't sure it was enough for her.
Now that she has been in school for almost five months, they are finally starting to agree with me when I say she needs one on one speech. They agreed to have the speech therapist observe her and yesterday we met to discuss the outcome of the observation.
So ... her expressive speech is at 12-18 months, but her receptive speech is at 24-36 months. And I pretty much concur with this, as much as these ranges suck.
They have agreed to do a formal evaluation and if everything goes as planned, she will be getting speech one on one sometime during her day at school. Thank the Lord.
The nice thing about all of this is that her teacher is completely on board with me. She said yesterday that she would like to see Payton doing more expressively. Me too! Payton is so smart and her receptive language is awesome. It is boggling my mind as to why her expressive speech is not coming along like everything else. I also am going to check into private speech options and see how much that might cost us. Ugh.
Tuesday, February 10, 2009
Monday, February 9, 2009
Getting Jiggy.
This past weekend, we attended a Valentine's dance hosted by our local Down syndrome group. It was so much fun ... in fact, the most fun my kids have had in a long time. They literally threw a fit when it was time to leave ... they were having too much fun getting jiggy.
Payton and Addison on the dance floor ...
they were so dang cute ...
they were so dang cute ...
Mr. Hot Stuff ...
Daddy dancing with Mason and Nika ...
Daddy dancing with Mason and Nika ...
Chicky grabbing a drink ... stitches and all ...
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. ;)
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. ;)
Nika's Sleep Study
My least favorite thing to do. Sleep studies.
Payton has had two sleep studies done so far and neither was a fun experience. She fought tooth and nail. Surprised? LOL.
Nika had her first sleep study last night and she did very well. She let them put all the wires on and she hardly messed with them at all.
What are all these wires?
By the time they got us settled in our room and got her all hooked up, it was past 10pm. It wasn't long until Nika was fast asleep ...
Nika has notoriously dry skin. We lube her up several times a day and her skin just sucks it up. This morning, as the sleep lab tech removed the tape from Nika's cheeks, it took some of the skin off. Grr.
Here is my sleeping beauty on the way home ...
I am really optimistic that Nika does not have sleep apnea. She is a pretty sound sleeper, however we wanted to have the sleep study done since sleep apnea is common in kids with Down syndrome.
Payton has had two sleep studies done so far and neither was a fun experience. She fought tooth and nail. Surprised? LOL.
Nika had her first sleep study last night and she did very well. She let them put all the wires on and she hardly messed with them at all.
What are all these wires?
By the time they got us settled in our room and got her all hooked up, it was past 10pm. It wasn't long until Nika was fast asleep ...
Nika has notoriously dry skin. We lube her up several times a day and her skin just sucks it up. This morning, as the sleep lab tech removed the tape from Nika's cheeks, it took some of the skin off. Grr.
Here is my sleeping beauty on the way home ...
I am really optimistic that Nika does not have sleep apnea. She is a pretty sound sleeper, however we wanted to have the sleep study done since sleep apnea is common in kids with Down syndrome.
Friday, February 6, 2009
Look what came in the mail today!
I am so excited!Wondering why I'm excited over diapers and pull ups?
Well ... Payton is on a Medicaid waiver and now that she is three years old, diapers and pull ups are covered free of charge. Every month, our monthly supply is shipped to us ... easy as that.
I know I mentioned potty training the other day, but I think I jumped the gun a little bit on the undies part. We'll be sticking to pull ups during the day and diapers at night until I know I can trust her. She is doing great staying dry, but like I said ... I don't want to jump the gun.
Anyway ... yay for free diapers and pull ups!
PS ... I'm sort of hesitant to share my excitement for something like this for fear that someone might think we are milking the system. My daughter has Down syndrome, sleep apnea and reflux. Among other less important things. Thus, she qualifies for a Medicaid waiver for long term care.
So 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. ;)
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