Re: Law and Duocal Question

[Guest guest]

Hi ,

We both take our daughters to CHOP- both named Emma too. Does Emma get

Medicaid? We have Americhoice as Emma's secondary insurance and it is paying

for Duocal. Keystone (our primary insurance and yes, the one we pay for)

denied the request but Americhoice approved it immediately thereafter.

Hanna and completed the necessary paperwork for us. I hate to see you

pay for the supplement when every little bit helps. We also get most of

Emma's formula paid for by WIC and you could get pediasure or cereal, etc for

Emma. I figure money we save on this stuff can be used for other necessary

items. Let me know if you need any more info.

Jen, mom to Emma, 9.5 months

[Guest guest]

Hi Jen,

I have been meaning to reply back to you on this but we were on vacation

and I'm still getting caught up. By the way, I am the woman who

introduced herself at the CHOP CF meeting they had in April or May. I

was sitting next to you and your husband and I overheard you say your

name and recoginized it from the list. I have a pretty good memory

sometimes. I actually just remembered your name because you were a

somewhat local family and your daughter has the same first name. Anyway,

Emma is on the PA Access plan which is I believe PA's medicaid program.

Her primary insurance is Amerihealth and her secondary insurance through

PA Access is Keystone Mercy. I was just in there this week and spoke to

both Hanna and (whose last day was Tuesday ... she is moving

to Seattle with her husband who just got his first job as a professor).

Neither one mentioned anything about WIC and I went into great detail

about the problems I am having getting Duocal. We did have Pediasure

provided to us via Keystone Mercy but so far they have been dening the

Duocal as being medically necessary. Emma has actually gained a good

amount of weight recently in large part to Duocal and heavy whipping

cream (the latter we think is what has been causing her latest bouts of

non-stop vomiting and we are stopping the use of it). I am not sure if

they consider weight when they determine medical necessity or not.

's advise was to find out which insurance is giving us the problems

and then try and resolve it with them. I am not to worried at the moment

since she is actually gaining weight real well. We'll see if it

continues once we substitute half and half for the whipping cream we were

using to puree things. Anyway, thanks for the advise. I will definately

ask about the possibility of WIC when I go at the end of the month.

By the way, PA lawmakers are currently milling over changing the PA

access (mediciad) program to make it based in part on income. Basically,

the change would be that even if your child is deemed medically to

qualify your income would have to be lower than a set limit which I

believe they are proposing to be either $95,000 or $100,000 which sounds

like a high number when you first look at it but when you are dishing out

money for supplements, etc already. These CF bills can take a big bite

out of your wallet. I have no idea who is actually covering many of

Emma's expenses related to the feeding tube (her monthly supplies), the

feeding program she attended (I am told by another parent it is $15,000

for three weeks), on going feeding therapy, surgery, her hospital stay,

the $1000 a month Synergis shots during RSV season. Some of these things

are covered by her secondary insurance. We are under the limit now but I

dread if this gets passed because at some point I am sure we will reach

that limit especially if I ever go back to work. I guess we'll just have

to see what happens.

Thanks for the info.

- mom to Emma 2 years w/cf and Isabelle almost 4 years wo/cf

On Wed, 24 Jul 2002 21:49:03 EDT JenCFList@... writes:

> Hi ,

> We both take our daughters to CHOP- both named Emma too. Does Emma

> get

> Medicaid? We have Americhoice as Emma's secondary insurance and it

> is paying

> for Duocal. Keystone (our primary insurance and yes, the one we pay

> for)

> denied the request but Americhoice approved it immediately

> thereafter.

> Hanna and completed the necessary paperwork for us. I hate

> to see you

> pay for the supplement when every little bit helps. We also get

> most of

> Emma's formula paid for by WIC and you could get pediasure or

> cereal, etc for

> Emma. I figure money we save on this stuff can be used for other

> necessary

> items. Let me know if you need any more info.

> Jen, mom to Emma, 9.5 months

>

>

>

[Guest guest]

,

Wow...PA is so much more enlightened than Florida. Here, disability or

not, Medicaid is cut off at $18,000/yr for a family of four, Children's

Medical Services at $36,000/yr. Even SSI for us would be denied if we

made more than $3300/mo. My husband, as a public school teacher, is not

provided health coverage for his family, unless we can somehow figure

out how to pay 1/3 of his take-home salary in premiums. Since I'm mostly

home with the kids, this is impossible. So, we stay under the income

limits as there is no other choice. It's pretty frustrating, though. I

live in fear of his raises, and we turn down extra work and side jobs

while still barely being able to make ends meet.

The Family Opportunity Act that I posted about would allow families to

buy into Medicaid on a sliding scale basis, so even if you made more

than your state's income limit, you could purchase coverage based on

your income. Let's hope it passes. Here is the contact information and

info on the bill if you would like to contact your representatives and

senators:

http://www.congress.org/congressorg/webreturn/?url=/cek/issues/alert/?al

ertid=251631

Here is a little blurb on the act:

About This Legislation:

2/13/2001--Introduced.

Family Opportunity Act of 2001 or Dylan Lee Act - Amends title XIX

(Medicaid) of the Social Security Act (SSA) to: (1) give States the

option of allowing families of disabled children to purchase Medicaid

coverage for such children; and (2) provide for treatment of inpatient

psychiatric hospital services for individuals under age 21 under waivers

allowing for payment of part or all of the cost of home or

community-based services.

Authorizes a State to apply to the Secretary of Health and Human

Services for approval of a demonstration project to provide Medicaid

coverage of up to a specified maximum number of children with a

potentially severe disability.

Amends SSA title V (Maternal and Child Health Services) to make

appropriations to the Secretary for special projects of regional and

national significance for development and support of family-to-family

health information centers.

Amends SSA title XIX to provide for the restoration of Medicaid

eligibility to certain SSI (Supplemental Security Income) (SSA title

XVI) beneficiaries under age 21.

^-^-^-^-^-^-^-^-^-^-^-^-^-^-^-^-^

mama to , 23 mo, wCF and alpha-1

and to , 3 yr 11 mo w/alpha-1

Re: Re: Law and Duocal Question

Hi Jen,

I have been meaning to reply back to you on this but we were on

vacation

and I'm still getting caught up. By the way, I am the woman who

introduced herself at the CHOP CF meeting they had in April or May. I

was sitting next to you and your husband and I overheard you say your

name and recoginized it from the list. I have a pretty good memory

sometimes. I actually just remembered your name because you were a

somewhat local family and your daughter has the same first name.

Anyway,

Emma is on the PA Access plan which is I believe PA's medicaid program.

Her primary insurance is Amerihealth and her secondary insurance through

PA Access is Keystone Mercy. I was just in there this week and spoke to

both Hanna and (whose last day was Tuesday ... she is

moving

to Seattle with her husband who just got his first job as a professor).

Neither one mentioned anything about WIC and I went into great detail

about the problems I am having getting Duocal. We did have Pediasure

provided to us via Keystone Mercy but so far they have been dening the

Duocal as being medically necessary. Emma has actually gained a good

amount of weight recently in large part to Duocal and heavy whipping

cream (the latter we think is what has been causing her latest bouts of

non-stop vomiting and we are stopping the use of it). I am not sure if

they consider weight when they determine medical necessity or not.

's advise was to find out which insurance is giving us the problems

and then try and resolve it with them. I am not to worried at the

moment

since she is actually gaining weight real well. We'll see if it

continues once we substitute half and half for the whipping cream we

were

using to puree things. Anyway, thanks for the advise. I will

definately

ask about the possibility of WIC when I go at the end of the month.

By the way, PA lawmakers are currently milling over changing the

PA

access (mediciad) program to make it based in part on income.

Basically,

the change would be that even if your child is deemed medically to

qualify your income would have to be lower than a set limit which I

believe they are proposing to be either $95,000 or $100,000 which sounds

like a high number when you first look at it but when you are dishing

out

money for supplements, etc already. These CF bills can take a big bite

out of your wallet. I have no idea who is actually covering many of

Emma's expenses related to the feeding tube (her monthly supplies), the

feeding program she attended (I am told by another parent it is $15,000

for three weeks), on going feeding therapy, surgery, her hospital stay,

the $1000 a month Synergis shots during RSV season. Some of these

things

are covered by her secondary insurance. We are under the limit now but

I

dread if this gets passed because at some point I am sure we will reach

that limit especially if I ever go back to work. I guess we'll just

have

to see what happens.

Thanks for the info.

- mom to Emma 2 years w/cf and Isabelle almost 4 years wo/cf

On Wed, 24 Jul 2002 21:49:03 EDT JenCFList@... writes:

> Hi ,

> We both take our daughters to CHOP- both named Emma too. Does Emma

> get

> Medicaid? We have Americhoice as Emma's secondary insurance and it

> is paying

> for Duocal. Keystone (our primary insurance and yes, the one we pay

> for)

> denied the request but Americhoice approved it immediately

> thereafter.

> Hanna and completed the necessary paperwork for us. I hate

> to see you

> pay for the supplement when every little bit helps. We also get

> most of

> Emma's formula paid for by WIC and you could get pediasure or

> cereal, etc for

> Emma. I figure money we save on this stuff can be used for other

> necessary

> items. Let me know if you need any more info.

> Jen, mom to Emma, 9.5 months

>

[Guest guest]

,

Wow...PA is so much more enlightened than Florida. Here, disability or

not, Medicaid is cut off at $18,000/yr for a family of four, Children's

Medical Services at $36,000/yr. Even SSI for us would be denied if we

made more than $3300/mo. My husband, as a public school teacher, is not

provided health coverage for his family, unless we can somehow figure

out how to pay 1/3 of his take-home salary in premiums. Since I'm mostly

home with the kids, this is impossible. So, we stay under the income

limits as there is no other choice. It's pretty frustrating, though. I

live in fear of his raises, and we turn down extra work and side jobs

while still barely being able to make ends meet.

The Family Opportunity Act that I posted about would allow families to

buy into Medicaid on a sliding scale basis, so even if you made more

than your state's income limit, you could purchase coverage based on

your income. Let's hope it passes. Here is the contact information and

info on the bill if you would like to contact your representatives and

senators:

http://www.congress.org/congressorg/webreturn/?url=/cek/issues/alert/?al

ertid=251631

Here is a little blurb on the act:

About This Legislation:

2/13/2001--Introduced.

Family Opportunity Act of 2001 or Dylan Lee Act - Amends title XIX

(Medicaid) of the Social Security Act (SSA) to: (1) give States the

option of allowing families of disabled children to purchase Medicaid

coverage for such children; and (2) provide for treatment of inpatient

psychiatric hospital services for individuals under age 21 under waivers

allowing for payment of part or all of the cost of home or

community-based services.

Authorizes a State to apply to the Secretary of Health and Human

Services for approval of a demonstration project to provide Medicaid

coverage of up to a specified maximum number of children with a

potentially severe disability.

Amends SSA title V (Maternal and Child Health Services) to make

appropriations to the Secretary for special projects of regional and

national significance for development and support of family-to-family

health information centers.

Amends SSA title XIX to provide for the restoration of Medicaid

eligibility to certain SSI (Supplemental Security Income) (SSA title

XVI) beneficiaries under age 21.

^-^-^-^-^-^-^-^-^-^-^-^-^-^-^-^-^

mama to , 23 mo, wCF and alpha-1

and to , 3 yr 11 mo w/alpha-1

Re: Re: Law and Duocal Question

Hi Jen,

I have been meaning to reply back to you on this but we were on

vacation

and I'm still getting caught up. By the way, I am the woman who

introduced herself at the CHOP CF meeting they had in April or May. I

was sitting next to you and your husband and I overheard you say your

name and recoginized it from the list. I have a pretty good memory

sometimes. I actually just remembered your name because you were a

somewhat local family and your daughter has the same first name.

Anyway,

Emma is on the PA Access plan which is I believe PA's medicaid program.

Her primary insurance is Amerihealth and her secondary insurance through

PA Access is Keystone Mercy. I was just in there this week and spoke to

both Hanna and (whose last day was Tuesday ... she is

moving

to Seattle with her husband who just got his first job as a professor).

Neither one mentioned anything about WIC and I went into great detail

about the problems I am having getting Duocal. We did have Pediasure

provided to us via Keystone Mercy but so far they have been dening the

Duocal as being medically necessary. Emma has actually gained a good

amount of weight recently in large part to Duocal and heavy whipping

cream (the latter we think is what has been causing her latest bouts of

non-stop vomiting and we are stopping the use of it). I am not sure if

they consider weight when they determine medical necessity or not.

's advise was to find out which insurance is giving us the problems

and then try and resolve it with them. I am not to worried at the

moment

since she is actually gaining weight real well. We'll see if it

continues once we substitute half and half for the whipping cream we

were

using to puree things. Anyway, thanks for the advise. I will

definately

ask about the possibility of WIC when I go at the end of the month.

By the way, PA lawmakers are currently milling over changing the

PA

access (mediciad) program to make it based in part on income.

Basically,

the change would be that even if your child is deemed medically to

qualify your income would have to be lower than a set limit which I

believe they are proposing to be either $95,000 or $100,000 which sounds

like a high number when you first look at it but when you are dishing

out

money for supplements, etc already. These CF bills can take a big bite

out of your wallet. I have no idea who is actually covering many of

Emma's expenses related to the feeding tube (her monthly supplies), the

feeding program she attended (I am told by another parent it is $15,000

for three weeks), on going feeding therapy, surgery, her hospital stay,

the $1000 a month Synergis shots during RSV season. Some of these

things

are covered by her secondary insurance. We are under the limit now but

I

dread if this gets passed because at some point I am sure we will reach

that limit especially if I ever go back to work. I guess we'll just

have

to see what happens.

Thanks for the info.

- mom to Emma 2 years w/cf and Isabelle almost 4 years wo/cf

On Wed, 24 Jul 2002 21:49:03 EDT JenCFList@... writes:

> Hi ,

> We both take our daughters to CHOP- both named Emma too. Does Emma

> get

> Medicaid? We have Americhoice as Emma's secondary insurance and it

> is paying

> for Duocal. Keystone (our primary insurance and yes, the one we pay

> for)

> denied the request but Americhoice approved it immediately

> thereafter.

> Hanna and completed the necessary paperwork for us. I hate

> to see you

> pay for the supplement when every little bit helps. We also get

> most of

> Emma's formula paid for by WIC and you could get pediasure or

> cereal, etc for

> Emma. I figure money we save on this stuff can be used for other

> necessary

> items. Let me know if you need any more info.

> Jen, mom to Emma, 9.5 months

>

[Guest guest]

,

Wow...PA is so much more enlightened than Florida. Here, disability or

not, Medicaid is cut off at $18,000/yr for a family of four, Children's

Medical Services at $36,000/yr. Even SSI for us would be denied if we

made more than $3300/mo. My husband, as a public school teacher, is not

provided health coverage for his family, unless we can somehow figure

out how to pay 1/3 of his take-home salary in premiums. Since I'm mostly

home with the kids, this is impossible. So, we stay under the income

limits as there is no other choice. It's pretty frustrating, though. I

live in fear of his raises, and we turn down extra work and side jobs

while still barely being able to make ends meet.

The Family Opportunity Act that I posted about would allow families to

buy into Medicaid on a sliding scale basis, so even if you made more

than your state's income limit, you could purchase coverage based on

your income. Let's hope it passes. Here is the contact information and

info on the bill if you would like to contact your representatives and

senators:

http://www.congress.org/congressorg/webreturn/?url=/cek/issues/alert/?al

ertid=251631

Here is a little blurb on the act:

About This Legislation:

2/13/2001--Introduced.

Family Opportunity Act of 2001 or Dylan Lee Act - Amends title XIX

(Medicaid) of the Social Security Act (SSA) to: (1) give States the

option of allowing families of disabled children to purchase Medicaid

coverage for such children; and (2) provide for treatment of inpatient

psychiatric hospital services for individuals under age 21 under waivers

allowing for payment of part or all of the cost of home or

community-based services.

Authorizes a State to apply to the Secretary of Health and Human

Services for approval of a demonstration project to provide Medicaid

coverage of up to a specified maximum number of children with a

potentially severe disability.

Amends SSA title V (Maternal and Child Health Services) to make

appropriations to the Secretary for special projects of regional and

national significance for development and support of family-to-family

health information centers.

Amends SSA title XIX to provide for the restoration of Medicaid

eligibility to certain SSI (Supplemental Security Income) (SSA title

XVI) beneficiaries under age 21.

^-^-^-^-^-^-^-^-^-^-^-^-^-^-^-^-^

mama to , 23 mo, wCF and alpha-1

and to , 3 yr 11 mo w/alpha-1

Re: Re: Law and Duocal Question

Hi Jen,

I have been meaning to reply back to you on this but we were on

vacation

and I'm still getting caught up. By the way, I am the woman who

introduced herself at the CHOP CF meeting they had in April or May. I

was sitting next to you and your husband and I overheard you say your

name and recoginized it from the list. I have a pretty good memory

sometimes. I actually just remembered your name because you were a

somewhat local family and your daughter has the same first name.

Anyway,

Emma is on the PA Access plan which is I believe PA's medicaid program.

Her primary insurance is Amerihealth and her secondary insurance through

PA Access is Keystone Mercy. I was just in there this week and spoke to

both Hanna and (whose last day was Tuesday ... she is

moving

to Seattle with her husband who just got his first job as a professor).

Neither one mentioned anything about WIC and I went into great detail

about the problems I am having getting Duocal. We did have Pediasure

provided to us via Keystone Mercy but so far they have been dening the

Duocal as being medically necessary. Emma has actually gained a good

amount of weight recently in large part to Duocal and heavy whipping

cream (the latter we think is what has been causing her latest bouts of

non-stop vomiting and we are stopping the use of it). I am not sure if

they consider weight when they determine medical necessity or not.

's advise was to find out which insurance is giving us the problems

and then try and resolve it with them. I am not to worried at the

moment

since she is actually gaining weight real well. We'll see if it

continues once we substitute half and half for the whipping cream we

were

using to puree things. Anyway, thanks for the advise. I will

definately

ask about the possibility of WIC when I go at the end of the month.

By the way, PA lawmakers are currently milling over changing the

PA

access (mediciad) program to make it based in part on income.

Basically,

the change would be that even if your child is deemed medically to

qualify your income would have to be lower than a set limit which I

believe they are proposing to be either $95,000 or $100,000 which sounds

like a high number when you first look at it but when you are dishing

out

money for supplements, etc already. These CF bills can take a big bite

out of your wallet. I have no idea who is actually covering many of

Emma's expenses related to the feeding tube (her monthly supplies), the

feeding program she attended (I am told by another parent it is $15,000

for three weeks), on going feeding therapy, surgery, her hospital stay,

the $1000 a month Synergis shots during RSV season. Some of these

things

are covered by her secondary insurance. We are under the limit now but

I

dread if this gets passed because at some point I am sure we will reach

that limit especially if I ever go back to work. I guess we'll just

have

to see what happens.

Thanks for the info.

- mom to Emma 2 years w/cf and Isabelle almost 4 years wo/cf

On Wed, 24 Jul 2002 21:49:03 EDT JenCFList@... writes:

> Hi ,

> We both take our daughters to CHOP- both named Emma too. Does Emma

> get

> Medicaid? We have Americhoice as Emma's secondary insurance and it

> is paying

> for Duocal. Keystone (our primary insurance and yes, the one we pay

> for)

> denied the request but Americhoice approved it immediately

> thereafter.

> Hanna and completed the necessary paperwork for us. I hate

> to see you

> pay for the supplement when every little bit helps. We also get

> most of

> Emma's formula paid for by WIC and you could get pediasure or

> cereal, etc for

> Emma. I figure money we save on this stuff can be used for other

> necessary

> items. Let me know if you need any more info.

> Jen, mom to Emma, 9.5 months

>

[Guest guest]

Hi ,

I am glad that Emma is gaining weight better these days. I am surprised

though that Keystone Mercy denied your request for Duocal. My impression was

that the Medicaid insurances are actually more apt to approve requests than

others. My cousin has Keystone Mercy for her daughter who has a serious

disability and it has approved everything. I am not saying that she hasn't

had to supply a lot of documentation but I know she has not had to go through

appeal processes, etc. Anyway, your Emma should have a case worker assigned

to her and I would talk to that person. Good luck. I know it's just a

supplement but it is expensive. Also, I think these insurance companies are

crazy for saying it is not medically necessary when good nutrition is so

important to a CF person's overall wellness. Oh well, I am preaching to the

choir by telling you this.

Jen