Please help if you can?

[Guest guest]

How much do you have to pay for your insurance through your work? If your

insurance premiums are 10% or more of your gross income, your child can still

qualify for your states CHIP program, and once on that program they have

programs for special needs kids. My state has Children's Special Health Care

Services ins., which is through medicaid, and has a much higher income bracket

than does medicaid or our CHIP program. Our hospital told me about it and

helped

me sign up. Maybe the hospital social worker would be able to have more

information for you on programs that you might qualify for. On the SSI website,

it states that most states have a similar program as my CSHCS ins., but may be

called something else. I don't know how to find out about it in W. VA but it

might be a start. CSHCS pays for all of our out of pocket costs that our

private ins. does not. You must have your own private ins. in order to have

CSHCS so it is different than CHIP.

Dee, Mom to Kody, age 9, Di syndrome, CVID, learning disabled, asthma,

general anxiety disorder, sensory integration disorder, animal lover and

protector, Yughio expert and chef extraordinaire. Also Mom to Arika, age 17,

senioritis. Kaila, age 13, allergies/asthma, queen of worry warts and

perfectionists. Sami, age 10, allergies/asthma, dyslexic, official family cheer

team

captain. Wife to , a loving wonderful dad and hyperactive workaholic.

Check out our website at: www.geocities.com/schmidtzoo/SNAK

[Guest guest]

Hi all, Sorry it is so long in between postings, but 's

infection rate is up and he has been constantly sick in this new

year. I am completely out of leave at work, and his ENT is talking

surgery. My dh recently moved out, and I dont know if we will be

getting back together or not! I guess having a child who is sick all

the time and the pressures of medical bills etc.. became

overwhelming, who knows...so now I am a single mom, with a mortgage

to pay, and my job carries our medical benefits so I cant lose it!

UGH!

Anyway, my question is this....Does anyone know of any Federal/State

(Virginia, or local) resources/programs to help MIDDLE INCOME

families with daycare, and medical bills for a chronically ill

child???? The Family Medical Leave Act (FMLA) provides me 12 weeks

UNPAID leave to care for because he is considered chronically

ill,but UNPAID time off is NOT an option. My daycare person can't

take when he has a fever and that is most days, a nanny is too

expensive and the ones I have had in the past would not show up for

work,so I am at a loss for what to do? The medical bills from what

my insurance doesn't cover is overwhelming and stretches me to the

limit! I have a masters degree, and have worked very hard to make a

good career for myself, BUT my son has to come first and it seems

like the only resources out there are for LOW INCOME families - SO

what do these people expect me to do??? Leave my job, and medical

benefits, file banckruptcy, and go on welfare??? I have only ten

hours of leave on the books left and has to go into the

hospital for tests on the 24th & 25th, and then possible surgery

next month UGH! I know everyone here has there own problems but I

really need and appreciate any help. I have gotten the run around

from Social Services - they wont even sit down and talk with me

because " I makie too much money " . I have also contacted several

State and Federal agencies for families and children with no help.

Does anyone know if the IDF has any resources?. There doesn't seem

to be a network of support in Northern VA but I KNOW there are other

middle class working parents out there near me with chronically ill

children - there has to be!

Thanks for your help! God Bless you All!

HUGS

__________________

" Mom2lil "

aka Amy

Mommy to my Sweet Baby

(22 months old, Primary Immune Deficiency Disease (PID), GERD)

[Guest guest]

If your Department of Human Services (or Social Services, whatever your state

calls it) won't help you, contact your state's representatives and senators or

the state governor. Many people don't realize that they can help you with these

types of problems. (They usually will assign a person to work specifically on

your case.) People would be amazed at the number of programs that are not

disclosed unless a real push is made.

Arkansas has a program (may be called TEFRA) that, if we ever get to the point

financially that Sam is not covered by the AR Kids 1st state insurance, he can

sign up for that. It is based on the child's income, not the parent(s) and I

believe it is geared for people with high dollar medical needs. (Assuming they

haven't budget cut the program by then.)

I'm so sorry that your situation has become so stressful. I will be praying

that your employer be given a heart of compassion for you.

God bless and sustain you,

Wenoka

Please help if you can?

Hi all, Sorry it is so long in between postings, but 's

infection rate is up and he has been constantly sick in this new

year. I am completely out of leave at work, and his ENT is talking

surgery. My dh recently moved out, and I dont know if we will be

getting back together or not! I guess having a child who is sick all

the time and the pressures of medical bills etc.. became

overwhelming, who knows...so now I am a single mom, with a mortgage

to pay, and my job carries our medical benefits so I cant lose it!

UGH!

Anyway, my question is this....Does anyone know of any Federal/State

(Virginia, or local) resources/programs to help MIDDLE INCOME

families with daycare, and medical bills for a chronically ill

child???? The Family Medical Leave Act (FMLA) provides me 12 weeks

UNPAID leave to care for because he is considered chronically

ill,but UNPAID time off is NOT an option. My daycare person can't

take when he has a fever and that is most days, a nanny is too

expensive and the ones I have had in the past would not show up for

work,so I am at a loss for what to do? The medical bills from what

my insurance doesn't cover is overwhelming and stretches me to the

limit! I have a masters degree, and have worked very hard to make a

good career for myself, BUT my son has to come first and it seems

like the only resources out there are for LOW INCOME families - SO

what do these people expect me to do??? Leave my job, and medical

benefits, file banckruptcy, and go on welfare??? I have only ten

hours of leave on the books left and has to go into the

hospital for tests on the 24th & 25th, and then possible surgery

next month UGH! I know everyone here has there own problems but I

really need and appreciate any help. I have gotten the run around

from Social Services - they wont even sit down and talk with me

because " I makie too much money " . I have also contacted several

State and Federal agencies for families and children with no help.

Does anyone know if the IDF has any resources?. There doesn't seem

to be a network of support in Northern VA but I KNOW there are other

middle class working parents out there near me with chronically ill

children - there has to be!

Thanks for your help! God Bless you All!

HUGS

__________________

" Mom2lil "

aka Amy

Mommy to my Sweet Baby

(22 months old, Primary Immune Deficiency Disease (PID), GERD)

[Guest guest]

Amy,

I don't know of Virgina programs, but I did want to tell you that I'll be

praying for you. It's not easy doing this by yourself...I know, I am a single

mom as well. But it can be done and you sound like a very strong woman to me.

If you want to e-mail me privately, please feel free.

Sandi, Mom to , age 12. CVID, Tetrology of Fallot, Pulmonary valve

transplant (2003), Mitral valve stenosis, COPD, asthma, Carnitine deficiency,

GERD,

suspected Velocardiofacial syndrome.

[Guest guest]

Well, when I wrote to the Virginia Governor about my son's situation and copied

my local representative, I got a nice " form " letter in response with no real

solution! Maybe I should try again who knows???? Thanks anyway.

A

Wenoka & <yhwhworship@...> wrote:

If your Department of Human Services (or Social Services, whatever your state

calls it) won't help you, contact your state's representatives and senators or

the state governor. Many people don't realize that they can help you with these

types of problems. (They usually will assign a person to work specifically on

your case.) People would be amazed at the number of programs that are not

disclosed unless a real push is made.

Arkansas has a program (may be called TEFRA) that, if we ever get to the point

financially that Sam is not covered by the AR Kids 1st state insurance, he can

sign up for that. It is based on the child's income, not the parent(s) and I

believe it is geared for people with high dollar medical needs. (Assuming they

haven't budget cut the program by then.)

I'm so sorry that your situation has become so stressful. I will be praying

that your employer be given a heart of compassion for you.

God bless and sustain you,

Wenoka

Please help if you can?

Hi all, Sorry it is so long in between postings, but 's

infection rate is up and he has been constantly sick in this new

year. I am completely out of leave at work, and his ENT is talking

surgery. My dh recently moved out, and I dont know if we will be

getting back together or not! I guess having a child who is sick all

the time and the pressures of medical bills etc.. became

overwhelming, who knows...so now I am a single mom, with a mortgage

to pay, and my job carries our medical benefits so I cant lose it!

UGH!

Anyway, my question is this....Does anyone know of any Federal/State

(Virginia, or local) resources/programs to help MIDDLE INCOME

families with daycare, and medical bills for a chronically ill

child???? The Family Medical Leave Act (FMLA) provides me 12 weeks

UNPAID leave to care for because he is considered chronically

ill,but UNPAID time off is NOT an option. My daycare person can't

take when he has a fever and that is most days, a nanny is too

expensive and the ones I have had in the past would not show up for

work,so I am at a loss for what to do? The medical bills from what

my insurance doesn't cover is overwhelming and stretches me to the

limit! I have a masters degree, and have worked very hard to make a

good career for myself, BUT my son has to come first and it seems

like the only resources out there are for LOW INCOME families - SO

what do these people expect me to do??? Leave my job, and medical

benefits, file banckruptcy, and go on welfare??? I have only ten

hours of leave on the books left and has to go into the

hospital for tests on the 24th & 25th, and then possible surgery

next month UGH! I know everyone here has there own problems but I

really need and appreciate any help. I have gotten the run around

from Social Services - they wont even sit down and talk with me

because " I makie too much money " . I have also contacted several

State and Federal agencies for families and children with no help.

Does anyone know if the IDF has any resources?. There doesn't seem

to be a network of support in Northern VA but I KNOW there are other

middle class working parents out there near me with chronically ill

children - there has to be!

Thanks for your help! God Bless you All!

HUGS

__________________

" Mom2lil "

aka Amy

Mommy to my Sweet Baby

(22 months old, Primary Immune Deficiency Disease (PID), GERD)

[Guest guest]

{{{Amy}}}

By local representative, do you mean at the state government level? Or the ones

in Congress? Try your congressional Senator. Maybe we've just got some

particularly responsive ones, but everyone I know who has written to our

senators has gotten a good follow-up response. One lady was even able to meet

with both of them while she was on a trip to Washington D.C. (suddenly after

that, the hospital - which had said it would not provide the only brand of IVIG

that her son did not react badly to due to price considerations - provided the

brand).

Also, your circumstances have changed. Now that you are a single mom, there may

be more options for you that you haven't discovered yet. You can send them a

copy of the form letter that they have already sent and explain the changes in

your life and let them know that you need more help than a form letter provides.

Keep looking for solutions. There is one out there. I know that it is

discouraging, that's one reason for this group, though, is to encourage one

another when life gets to us.

God bless,

Wenoka

Re: Please help if you can?

Well, when I wrote to the Virginia Governor about my son's situation and

copied my local representative, I got a nice " form " letter in response with no

real solution! Maybe I should try again who knows???? Thanks anyway.

A

Wenoka & <yhwhworship@...> wrote:

If your Department of Human Services (or Social Services, whatever your state

calls it) won't help you, contact your state's representatives and senators or

the state governor. Many people don't realize that they can help you with these

types of problems. (They usually will assign a person to work specifically on

your case.) People would be amazed at the number of programs that are not

disclosed unless a real push is made.

Arkansas has a program (may be called TEFRA) that, if we ever get to the point

financially that Sam is not covered by the AR Kids 1st state insurance, he can

sign up for that. It is based on the child's income, not the parent(s) and I

believe it is geared for people with high dollar medical needs. (Assuming they

haven't budget cut the program by then.)

I'm so sorry that your situation has become so stressful. I will be praying

that your employer be given a heart of compassion for you.

God bless and sustain you,

Wenoka

[Guest guest]

Amy, contact your school district….with the infections he is at “risk

for developmental delay”, which may plug you into some services…..That

is where I would start….You are right though, it’s very tough for us

middle income people to make it work…..I’m so sorry about you and your

dh….that has to be overwhelming also…..Hang in there. Give that a try.

Good luck.

HYPERLINK

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[Guest guest]

from dale, Mom to Katy, CVID, age 20

Amy, I've had really good success with a group called A.C.C.E.S.S.

They are not only knowledgeable about chronic illness including PIDs but

also kind. They helped us sort through options while was

unemployed last year. Their number is 1-888-700-7010. Their titled

is: " Advocating for Chronic Conditions, Entitlements and Social

Services. A program developed by Gentiva Health Services to assist

families with social and economic problems that can develop when

treating a chronic medical condition, such as primary immune

deficiency. " All of their services are free.

Hope that helps and I'm sorry about your marriage. It's hard to deal

with two problems at the same time -- and it sounds like you've got more

than a couple!! If I can be of any help to you, please contact me

privately.

Which should be a reminder to all of us to keep a close eye on our

communication, etc. with our mate. Sometimes with a sick child -- our

focus becomes so one-sided that everyone else feels alienated. It is a

tremendous struggle for both parents to deal with. I know that while

Katy was so bad, I didn't feel good about leaving her so I could go out

on a " date " with my husband. We finally remedied it by going out only

after she was asleep at night. We'd tuck her in bed, leave her with her

older brother (he was 15 by that time and very responsible). And we

knew of an all-night Denny that made great desserts. We'd slip away and

she'd never know we were gone. We also often bought groceries together

after she was asleep -- so that she would be okay with the idea of Mom

and Dad leaving while she was asleep (as long as was awake and

watchful). When you've got your hands full of sick kids and

uncooperative doctors and insurance hassles -- it's hard to keep up the

work required for a good marriage -- but it's absolutely necessary.

So, take a few minutes this evening (between wiping noses, mopping up

the vomit and testing that poop for parasites and give hubby an extra

big hug -- tell him that's for hanging in there.)

In His service,

Dale

[Guest guest]

Amy, I just wanted to let you know that I am going to pray for you and . I

can't imagine what you are going through but I pray that some answers will come.

I am so sorry that you are going through this. Do you have any family that

could help out? Could your husband pay for daycare/nanny? Just some ideas....I

live in Montana so I know nothing. However, where I live the hospital has a

" daycare " that takes sick kids and the people watching the kids are nurses.

Just a thought. God bless I hope all works out for you and .

Amy (mom to Bradley, almost 3, IGA Def)

Please help if you can?

Hi all, Sorry it is so long in between postings, but 's

infection rate is up and he has been constantly sick in this new

year. I am completely out of leave at work, and his ENT is talking

surgery. My dh recently moved out, and I dont know if we will be

getting back together or not! I guess having a child who is sick all

the time and the pressures of medical bills etc.. became

overwhelming, who knows...so now I am a single mom, with a mortgage

to pay, and my job carries our medical benefits so I cant lose it!

UGH!

Anyway, my question is this....Does anyone know of any Federal/State

(Virginia, or local) resources/programs to help MIDDLE INCOME

families with daycare, and medical bills for a chronically ill

child???? The Family Medical Leave Act (FMLA) provides me 12 weeks

UNPAID leave to care for because he is considered chronically

ill,but UNPAID time off is NOT an option. My daycare person can't

take when he has a fever and that is most days, a nanny is too

expensive and the ones I have had in the past would not show up for

work,so I am at a loss for what to do? The medical bills from what

my insurance doesn't cover is overwhelming and stretches me to the

limit! I have a masters degree, and have worked very hard to make a

good career for myself, BUT my son has to come first and it seems

like the only resources out there are for LOW INCOME families - SO

what do these people expect me to do??? Leave my job, and medical

benefits, file banckruptcy, and go on welfare??? I have only ten

hours of leave on the books left and has to go into the

hospital for tests on the 24th & 25th, and then possible surgery

next month UGH! I know everyone here has there own problems but I

really need and appreciate any help. I have gotten the run around

from Social Services - they wont even sit down and talk with me

because " I makie too much money " . I have also contacted several

State and Federal agencies for families and children with no help.

Does anyone know if the IDF has any resources?. There doesn't seem

to be a network of support in Northern VA but I KNOW there are other

middle class working parents out there near me with chronically ill

children - there has to be!

Thanks for your help! God Bless you All!

HUGS

__________________

" Mom2lil "

aka Amy

Mommy to my Sweet Baby

(22 months old, Primary Immune Deficiency Disease (PID), GERD)

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

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