Re: bottle vs sippy and other issues

[Guest guest]

I'm sorry you're facing this. I don't have personal experience, but I have heard that people with MDS can have more trouble getting government-funded services, including SSI, than people with DS. I don't know if it's true, and sorry I can't be of more help, but I'd be interested in hearing about yours or others' experience.

Beth

bottle vs sippy and other issues

It was great reading everyone's view on this.I'm trying my best to stop the bottle feeding, but their are times I have to let him use his bottle or he wouldn't have enough fluids in his system.I never let him sleep with his bottle and boy am I familiar with those ear infections. So far he hasn't had any lately. Thank goodness!Yesterday I received a letter in the mail from the Commonwealth of VA Dept of Rehabilitative Services. It kind of pissed me off! (excuse me)They're making me take Brannon to another doctor that they have assigned which will cost me nothing. This is what it saids on the paper work."The Social Security Administration has sent your disability claim to us for evaluation. After reviewing your claim, we find that more medical evidence is needed, therefore we have scheduled an examination, at no cost to you, with the examiner listed below:"What exactly is this doctor going to do to my son that his doctor hasn't already done to show that he has MDS. I have paperwork that show his chromosome results, that he has ASD (small hole in his heart) and that he has to take therapy b/c he has not started talking or walking and he is almost 2 yrs old. How much more evidence do they need?Has anyone else had to go through all of this with their child?Why would I want to lie about my child having a disability? If they don't want to grant my child a SSI check then don't. As long as he is eligible for Medicaid that is fine with me. Our insurance will not cover his speech therapy, but everything else. Plus those co pays add up and Medicaid will cover all of those too. The appt is on the 2-27-2002 at 10 am in a city about 45 minutes away.Watch me go into labor that day. lolI just wanted to see if any other parents had to go through the same thing and was eventually denied everything after the evaluation.Thanxa Mom to Brannon 21 mths w/mdsWon't you please consider adding your personal story on the MDS website today? http://www.mosaicdownsyndrome.com*************************************************MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus*************************************************

[Guest guest]

SSI:

Beth: It doesn't go any easier for either way. My daughter has MDS (90%,

which we just found out the percentage) AND some significant heart

defects and eating/swallowing abnormalities, yet we didn't get ssi

either. It is based on parent's income, not the disability alone.

However, Sierra does get Beckett (a state medicare program for

chronically ill children), which helps pay for prescriptions and co-pays,

diapers, special chair etc etc.

Kris

[Guest guest]

a;

Sierra was denied ssi as well. I think it is so stupid. They based it

on our income and didn't count her as a family member. Even though she

has significant cardiac/swallowing/mds; it still wasn't good enough for

them. I think it does go by income more than diagnosis, at least it did

for us.

Kris

[Guest guest]

Dear , I am living in Western PA, and it seems that I am far luckier than I realized! We did not have any such thing to go through, but I think I can assure you that you will not be disqualified for any services because the findings will be the same as the previous ones. This sounds like the "hell" they put a person through in PA when they try to get placed on disability for an injury they have sustained or something like that. Also, having worked for a doctor for 10 years, I can remember thinking how stupid it was that we had to fill out a form for a person with a permanent disability every year to say they still had it! Sometimes it would be for an adult with DS, and I would say to the other girls in the office, "Have the SSI folks ever seen a person cured of DS, blindness, severe retardation, etc.?!" I thought it was ridiculous. So I am saying here that I think you are being put through this so they can perhaps say your child will not get any SSI money as an infant (we never applied due to the income limits being out of line for us), but I think you will be able to keep every service you already have. It is nothing but pain in the neck red tape! They want to make sure you are not some fun loving thrill seeker who simply dreamed of having a child with MDS and a hole in his heart so you made it all up! UUGH!!! Best Wishes & Blessings to you, Barb Martz Mom to Jonas (MDS) & 6 bottle vs sippy and other issues It was great reading everyone's view on this.I'm trying my best to stop the bottle feeding, but their are times Ihave to let him use his bottle or he wouldn't have enough fluids inhis system.I never let him sleep with his bottle and boy am I familiar withthose ear infections. So far he hasn't had any lately. Thank goodness!Yesterday I received a letter in the mail from the Commonwealth of VADept of Rehabilitative Services. It kind of pissed me off! (excuseme)They're making me take Brannon to another doctor that they haveassigned which will cost me nothing. This is what it saids on thepaper work."The Social Security Administration has sent your disability claim tous for evaluation. After reviewing your claim, we find that moremedical evidence is needed, therefore we have scheduled anexamination, at no cost to you, with the examiner listed below:"What exactly is this doctor going to do to my son that his doctorhasn't already done to show that he has MDS. I have paperwork thatshow his chromosome results, that he has ASD (small hole in hisheart) and that he has to take therapy b/c he has not started talkingor walking and he is almost 2 yrs old. How much more evidence do theyneed?Has anyone else had to go through all of this with their child?Why would I want to lie about my child having a disability? If theydon't want to grant my child a SSI check then don't. As long as he iseligible for Medicaid that is fine with me. Our insurance will notcover his speech therapy, but everything else. Plus those co pays addup and Medicaid will cover all of those too.The appt is on the 2-27-2002 at 10 am in a city about 45 minutes away.Watch me go into labor that day. lolI just wanted to see if any other parents had to go through the samething and was eventually denied everything after the evaluation.Thanxa Mom to Brannon 21 mths w/mds

[Guest guest]

L.L. Dumais wrote:

>SSI:

>My daughter has MDS (90%,

>which we just found out the percentage) AND some significant heart

>defects and eating/swallowing abnormalities, yet we didn't get ssi

>either. It is based on parent's income, not the disability alone.

>Kris

Is ssi a state or federal program? I was told would not qualify for

ssi unless she showed major delays, (which at 8 weeks, we do not know) Nothing

was mentioned about income. Sounds like she just didn't want me to apply

for it right now.

Hope

Won't you please consider adding your personal story on the MDS

website today? http://www.mosaicdownsyndrome.com

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

MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus

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

[Guest guest]

anx for everyone's support about this matter.

I'll besure to let everyone know what happens.

I went through Brannon's medical papers and put them together to take

with me. I don't know if that's nescessary or not. I just don't want

him being pricked and poked for no reason when I have evidence

already

there shouldnt be any medical testing done, they should go by the test results..... you already have. It will be more of a physc test .... good luck with the whole thing.... if you dont get ssi then there should be a nother medical coverage you can get thru the state ... it isnt medical assistance but works as medicaid. Kaitee gets it here in maryland .... it pays for everything dealing with her hearing aides and vision problems..... we didnt qualify for ssi , we owned to much .... but the health insurance we had at the time would not cover kaitee's hearing aides or any testing pertaining to her use of hearing aides..... seems how they run almost 5000.00 per year to care for we certainly appreciate the coverage.

another thing concerning ssi...... always be careful how you set up any bank accounts or trust funds or inheirtance for you special child.... it would effect him or her being eligible for ssi when they turn 18 and if by chance they are not capable of being independantly supporting.

good luck . debbi

[Guest guest]

a,

As for the bottle issue, I understand what you mean

about the fluids. The only problem you will have is

getting him off it when the baby comes. You could try

to give him a sippy cup in the middle of the day with

his favorite drink and see how he does.

As for the ssi. I went through this last year. And I

remember when I first tried to get Tim on SSI, I had

to see one of thier dr.'s. We saw a psyciatrist. The

first problem is, they just passed a law that all

people with mds do not automatically quallify. The

second thing is, lots of people say that they are

disabled (mainly adults) when they are not. So, they

have to review every so often, to make sure that you

are. Because of the heart problem and the speech

needed, you should not have a problem. I would not

offer any info unless asked. Think carefully about

what you say and how you present your son. If you feel

as though you can not make the trip due to the fact

that you are close to delivering, tell them you will

have to rescedule. The people I worked with were very

nice. Also, when you get the results, they may seem

depressing. The workers tend to over exaterate your

case for your benifit. So, don't take it to heart.

I hope it turns out ok ! Let us know.

Kristy

--- kristinanbrian wrote:

> It was great reading everyone's view on this.

> I'm trying my best to stop the bottle feeding, but

> their are times I

> have to let him use his bottle or he wouldn't have

> enough fluids in

> his system.

> I never let him sleep with his bottle and boy am I

> familiar with

> those ear infections. So far he hasn't had any

> lately. Thank goodness!

>

> Yesterday I received a letter in the mail from the

> Commonwealth of VA

> Dept of Rehabilitative Services. It kind of pissed

> me off! (excuse

> me)

> They're making me take Brannon to another doctor

> that they have

> assigned which will cost me nothing. This is what it

> saids on the

> paper work.

>

> " The Social Security Administration has sent your

> disability claim to

> us for evaluation. After reviewing your claim, we

> find that more

> medical evidence is needed, therefore we have

> scheduled an

> examination, at no cost to you, with the examiner

> listed below: "

>

> What exactly is this doctor going to do to my son

> that his doctor

> hasn't already done to show that he has MDS. I have

> paperwork that

> show his chromosome results, that he has ASD (small

> hole in his

> heart) and that he has to take therapy b/c he has

> not started talking

> or walking and he is almost 2 yrs old. How much more

> evidence do they

> need?

>

> Has anyone else had to go through all of this with

> their child?

>

> Why would I want to lie about my child having a

> disability? If they

> don't want to grant my child a SSI check then don't.

> As long as he is

> eligible for Medicaid that is fine with me. Our

> insurance will not

> cover his speech therapy, but everything else. Plus

> those co pays add

> up and Medicaid will cover all of those too.

>

> The appt is on the 2-27-2002 at 10 am in a city

> about 45 minutes away.

> Watch me go into labor that day. lol

>

> I just wanted to see if any other parents had to go

> through the same

> thing and was eventually denied everything after the

> evaluation.

>

> Thanx

>

> a Mom to Brannon 21 mths w/mds

>

>

>

>

[Guest guest]

Hope:

I believe it is a federal program. After spending 2 hrs filling out

paperwork, being a total wreck that I was put in that situation, just for

them to tell me without looking at the papers, that we were over the

income levels, I was veruy upset and never pursued it again.

Kris

[Guest guest]

a:

I had a great social worker assigned to me through the

parish school board in the city that we live in. She

helped me fill out the paper work and send it to ssi.

Also, told me about other benefits we were eligable

for because of brianna being mds and have a congenital

heart defect. She is considered disabled and ssi

granted her back pay from the day we applied. IT took

like 6 months before i could even get the appt. It is

worth looking into because the extra money does help

and especially if we have to pay people to help our

little ones which insurance dont always cover. I

would ask about a social worker. Anytime SSI starts

giving me some CRAP(sorry), i call her and she takes

care of it. It sounds like there trying to doubt

brannons diagnosis and i would question why your child

has to go through that agian when you have paperwork

from a M.D. Provide paperwork from the genestict,

cardiologist, heart surgeon, pediatrician, that is

what we did. Good luck

--- kristy colvin wrote:

> a,

> As for the bottle issue, I understand what you mean

> about the fluids. The only problem you will have is

> getting him off it when the baby comes. You could

> try

> to give him a sippy cup in the middle of the day

> with

> his favorite drink and see how he does.

> As for the ssi. I went through this last year. And I

> remember when I first tried to get Tim on SSI, I had

> to see one of thier dr.'s. We saw a psyciatrist. The

> first problem is, they just passed a law that all

> people with mds do not automatically quallify. The

> second thing is, lots of people say that they are

> disabled (mainly adults) when they are not. So, they

> have to review every so often, to make sure that you

> are. Because of the heart problem and the speech

> needed, you should not have a problem. I would not

> offer any info unless asked. Think carefully about

> what you say and how you present your son. If you

> feel

> as though you can not make the trip due to the fact

> that you are close to delivering, tell them you will

> have to rescedule. The people I worked with were

> very

> nice. Also, when you get the results, they may seem

> depressing. The workers tend to over exaterate your

> case for your benifit. So, don't take it to heart.

> I hope it turns out ok ! Let us know.

> Kristy

> --- kristinanbrian wrote:

> > It was great reading everyone's view on this.

> > I'm trying my best to stop the bottle feeding, but

> > their are times I

> > have to let him use his bottle or he wouldn't have

> > enough fluids in

> > his system.

> > I never let him sleep with his bottle and boy am I

> > familiar with

> > those ear infections. So far he hasn't had any

> > lately. Thank goodness!

> >

> > Yesterday I received a letter in the mail from the

> > Commonwealth of VA

> > Dept of Rehabilitative Services. It kind of

> pissed

> > me off! (excuse

> > me)

> > They're making me take Brannon to another doctor

> > that they have

> > assigned which will cost me nothing. This is what

> it

> > saids on the

> > paper work.

> >

> > " The Social Security Administration has sent your

> > disability claim to

> > us for evaluation. After reviewing your claim, we

> > find that more

> > medical evidence is needed, therefore we have

> > scheduled an

> > examination, at no cost to you, with the examiner

> > listed below: "

> >

> > What exactly is this doctor going to do to my son

> > that his doctor

> > hasn't already done to show that he has MDS. I

> have

> > paperwork that

> > show his chromosome results, that he has ASD

> (small

> > hole in his

> > heart) and that he has to take therapy b/c he has

> > not started talking

> > or walking and he is almost 2 yrs old. How much

> more

> > evidence do they

> > need?

> >

> > Has anyone else had to go through all of this with

> > their child?

> >

> > Why would I want to lie about my child having a

> > disability? If they

> > don't want to grant my child a SSI check then

> don't.

> > As long as he is

> > eligible for Medicaid that is fine with me. Our

> > insurance will not

> > cover his speech therapy, but everything else.

> Plus

> > those co pays add

> > up and Medicaid will cover all of those too.

> >

> > The appt is on the 2-27-2002 at 10 am in a city

> > about 45 minutes away.

> > Watch me go into labor that day. lol

> >

> > I just wanted to see if any other parents had to

> go

> > through the same

> > thing and was eventually denied everything after

> the

> > evaluation.

> >

> > Thanx

> >

> > a Mom to Brannon 21 mths w/mds

> >

> >

> >

> >