Does anybody know of any state/federal programs that will help ease the financial burden of staying at home to care for a child with CF? My daughter is 3 months old and has been hospitalized twice. I can't imagine returning to work, but I literally make 50% of our family income and we couldn't survive. Any ideas?
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staying at home
- Thread starter anonymous
- Start date
I don't know of any financial relief programs. However, I did quit my job to stay home. After being tired of being broke and struggling, I decided to do daycare. I have control over Cale's environment and I get to be home with him. I did stress to my families the importance of not bringing their kids when they are ill (fever, respritory, etc) and I urged them to have a back up plan for when our family is under the weather. (that hasn't happened yet!!) They know of our Dr appts up front and things have worked out well. I also work an evening job to get me out of the house in the Winter, but will probably be leaving that soon until next winter. I am interviewing 2 families Wed, and if they come to me, I will actually be making more money then when I worked at the bank.
There are options and sometimes you have to get creative, but they are out there!
There are options and sometimes you have to get creative, but they are out there!
I just wanted to respond to this as well- I am working a full time job as well with Kayla my 3 year old not knowing yet of the CF test results as well as her 3 brothers and sisters. I did do daycare for 2 years before returning back to work and it can be an very good option.
Tammey- mom to Kayla
Tammey- mom to Kayla
What state do you live in? As far as federal programs, no, none exist in the United states. If you want to list your state though I'd be happy to look into some stuff for you. If you are able to email me at <a target=new class=ftalternatingbarlinklarge href="mailto:division902@hotmail.com">division902@hotmail.com</a>, It will be easier for me to get the information back to you (sometimes I 'loose' the posts on the site).
What state do you live in? As far as federal programs, no, none exist in the United states. If you want to list your state though I'd be happy to look into some stuff for you. If you are able to email me at <a target=new class=ftalternatingbarlinklarge href="mailto:division902@hotmail.com">division902@hotmail.com</a>, It will be easier for me to get the information back to you (sometimes I 'loose' the posts on the site).
My situation is a bit different. I am the one with CF & was forced to stop working if I wanted to continue living. I didnt have the ability to balance work, motherhood & being a wife in addition to taking care of myself. When I quit working & before I collected my disability we were in total financial turmoil. We had a car repossessed. Filed bankruptcy. Had utilities shut off (not major like electric etc). Filed for assistance like HEAP etc thru Social Services. I was afraid to answer the telephone for the first year after I stopped working. We didnt have ANY extra $$$ & if we did by some chance I tried to stock up on food items for me. I changed my meds to get free stuff from the manufacturers. U name it & I did it. Except go on Welfare Assistance & that is only because we were not eligible. I, of course, dont know how serious your financial status is. I do, however, always ask people to really look at their needs. A friend of mine was & still is living paycheck to paycheck (even tho now she has a 2 income family) & I asked how she could cut back. What could she disconnect until they were stable financially? She told me nothing. I said what about the internet....she said oh no I use that everyday to look up telephone numbers (in addition to other things). I laughed & said "Have U ever heard of a telephone book. U know those things we get that everyone use to use!". I by no means what to undermind your situation, this is just an example of how the term "necessities" has shifted so much. I remember when we didnt have cell phones, answering machines, microwaves, remote controls & cable.......Goodness I am getting old! As far as the actual help that U inquired about. I honestly dont know. I never persued such an avenue!
My situation is a bit different. I am the one with CF & was forced to stop working if I wanted to continue living. I didnt have the ability to balance work, motherhood & being a wife in addition to taking care of myself. When I quit working & before I collected my disability we were in total financial turmoil. We had a car repossessed. Filed bankruptcy. Had utilities shut off (not major like electric etc). Filed for assistance like HEAP etc thru Social Services. I was afraid to answer the telephone for the first year after I stopped working. We didnt have ANY extra $$$ & if we did by some chance I tried to stock up on food items for me. I changed my meds to get free stuff from the manufacturers. U name it & I did it. Except go on Welfare Assistance & that is only because we were not eligible. I, of course, dont know how serious your financial status is. I do, however, always ask people to really look at their needs. A friend of mine was & still is living paycheck to paycheck (even tho now she has a 2 income family) & I asked how she could cut back. What could she disconnect until they were stable financially? She told me nothing. I said what about the internet....she said oh no I use that everyday to look up telephone numbers (in addition to other things). I laughed & said "Have U ever heard of a telephone book. U know those things we get that everyone use to use!". I by no means what to undermind your situation, this is just an example of how the term "necessities" has shifted so much. I remember when we didnt have cell phones, answering machines, microwaves, remote controls & cable.......Goodness I am getting old! As far as the actual help that U inquired about. I honestly dont know. I never persued such an avenue!
My fear that when DS was diagnosed was that one of us would have to stay home. In fact a doctor suggested we get a nanny. Quite frankly I don't have the patience to stay home full time with a child, plus the loss of income would have been a major blow. DS goes to a daycare and interacts with other children. DH and I both work full time. We do have flexible schedules and grandparents nearby to help if ds gets sick.
My fear that when DS was diagnosed was that one of us would have to stay home. In fact a doctor suggested we get a nanny. Quite frankly I don't have the patience to stay home full time with a child, plus the loss of income would have been a major blow. DS goes to a daycare and interacts with other children. DH and I both work full time. We do have flexible schedules and grandparents nearby to help if ds gets sick.
I'm a mother of three kids 15no cf, 11 no cf, and 9months with cf. After working for 17 years I dicided to stay home with my baby. I could not bare to let him with a babysiter. I feel responsible of his life and my husband and I decided that it was for the beast. It has been hard to manish with just on income coming home, but we have learn that our son life is more inportant for us. You will make it just take one day at a time and god will help you to go on with your new life. Enjoy every moment of life that you have with your family. good luck.
I'm a mother of three kids 15no cf, 11 no cf, and 9months with cf. After working for 17 years I dicided to stay home with my baby. I could not bare to let him with a babysiter. I feel responsible of his life and my husband and I decided that it was for the beast. It has been hard to manish with just on income coming home, but we have learn that our son life is more inportant for us. You will make it just take one day at a time and god will help you to go on with your new life. Enjoy every moment of life that you have with your family. good luck.
I don't know if this will help but depending on the amount of income your family will receive without you working you may qualify for your child to receive Supplemental Security Income - SSI from the government. My daughter has received it for 8 years now (one income family). Anyway, good luck. God Bless You and yours.
Judy
Mom of Halee 12/cf
Megan 15/no cf , Kari 19/no cf
Judy
Mom of Halee 12/cf
Megan 15/no cf , Kari 19/no cf
I don't know if this will help but depending on the amount of income your family will receive without you working you may qualify for your child to receive Supplemental Security Income - SSI from the government. My daughter has received it for 8 years now (one income family). Anyway, good luck. God Bless You and yours.
Judy
Mom of Halee 12/cf
Megan 15/no cf , Kari 19/no cf
Judy
Mom of Halee 12/cf
Megan 15/no cf , Kari 19/no cf
HollyCatheryn
New member
Jusy is right, you ought to check into SSI for your daughter. You also ought to make an appointment with your hospital/clinic social worker. They often know the tricks to getting what you need. If that doesn't work, you can contact Beth Sufian. She is a lawyer with CF who specializes in disability law. She has a hotline for people with CF (800-622-0385 or <A href="mailto:bsufian@usacfa.org">bsufian@usacfa.org</A>). If anybody knows how to work the legal system to get what you need it is her. She is up on all the latest with Medicare and Medicaid, SSI and SSDI. This may sound totally crazy at first reading, but think about it and let it sink in. If your husband's income is over the limit for government or drug programs (like the grants and scholarships that provide drugs to low-income families or those in a crunch), it may actually be in your best interest for him to take a pay cut so that you can qualify for aid. Sometimes taking the cut in pay can actually get you enough in aid to more than make up for the lost income. My husband made too much last school year for me to get SSI and Medicaid. Between paying my own premiums and meeting the deductibles on high-risk state insurance and paying drug copays, we ended up with lots of bills. He took a cut in pay this school year and we actually save money because my meds are covered as well as my dr visits, etc. Our daughter qualifies for Medicaid, so there are no bills for her and my husband qualifies for a low-income program for his meds and dr visits, so there are no bills for him either.You can also consider doing some sort of free-lance thing from home. I do not mean like Mary Kay. I mean, tutoring or taking in laundry or doing grocery shopping. You may be able to make enough per month doing that to help with bills, but still stay under the limit. Please don't take this the wrong way, but if you get paid in cash for this then there is no bank balance to declare. Whatever you already do, there is someone who is too busy to do it or who doesn't like to or doesn't know how. You can tutor in anything from typing to cooking to math. If you go grocery shopping, find someone who would appreciate the convenience and take their list along - you can do both at once. Then charge them the amount of groceries, plus either a set fee or a percentage of the purchase. Ditto laundry. This is SO easy. You can charge extra for picking it up and dropping it off yourself and for ironing. That is nice because you just toss it in and go back to what you were doing. Make sure to figure in your cost for water, electricity and supplies as well as your time. Cleaning houses is another easy one. Especially if you do "green" cleaning, you can make a killing and you can feel good about having your daughter around while you're doing it. Put her in the sling, backpack or frontpack and get to it. Around here, people pay $85 for cleaning a 2,500 sq.ft. house. Do that once or twice a week and you're in good shape. Get creative. If you need money, you can find a way to make money with minimal extra work.
HollyCatheryn
New member
Jusy is right, you ought to check into SSI for your daughter. You also ought to make an appointment with your hospital/clinic social worker. They often know the tricks to getting what you need. If that doesn't work, you can contact Beth Sufian. She is a lawyer with CF who specializes in disability law. She has a hotline for people with CF (800-622-0385 or <A href="mailto:bsufian@usacfa.org">bsufian@usacfa.org</A>). If anybody knows how to work the legal system to get what you need it is her. She is up on all the latest with Medicare and Medicaid, SSI and SSDI. This may sound totally crazy at first reading, but think about it and let it sink in. If your husband's income is over the limit for government or drug programs (like the grants and scholarships that provide drugs to low-income families or those in a crunch), it may actually be in your best interest for him to take a pay cut so that you can qualify for aid. Sometimes taking the cut in pay can actually get you enough in aid to more than make up for the lost income. My husband made too much last school year for me to get SSI and Medicaid. Between paying my own premiums and meeting the deductibles on high-risk state insurance and paying drug copays, we ended up with lots of bills. He took a cut in pay this school year and we actually save money because my meds are covered as well as my dr visits, etc. Our daughter qualifies for Medicaid, so there are no bills for her and my husband qualifies for a low-income program for his meds and dr visits, so there are no bills for him either.You can also consider doing some sort of free-lance thing from home. I do not mean like Mary Kay. I mean, tutoring or taking in laundry or doing grocery shopping. You may be able to make enough per month doing that to help with bills, but still stay under the limit. Please don't take this the wrong way, but if you get paid in cash for this then there is no bank balance to declare. Whatever you already do, there is someone who is too busy to do it or who doesn't like to or doesn't know how. You can tutor in anything from typing to cooking to math. If you go grocery shopping, find someone who would appreciate the convenience and take their list along - you can do both at once. Then charge them the amount of groceries, plus either a set fee or a percentage of the purchase. Ditto laundry. This is SO easy. You can charge extra for picking it up and dropping it off yourself and for ironing. That is nice because you just toss it in and go back to what you were doing. Make sure to figure in your cost for water, electricity and supplies as well as your time. Cleaning houses is another easy one. Especially if you do "green" cleaning, you can make a killing and you can feel good about having your daughter around while you're doing it. Put her in the sling, backpack or frontpack and get to it. Around here, people pay $85 for cleaning a 2,500 sq.ft. house. Do that once or twice a week and you're in good shape. Get creative. If you need money, you can find a way to make money with minimal extra work.
Emily65Roses
New member
<blockquote>Quote
<hr><i>Originally posted by: <b>Anonymous</b></i>
You can always try for SSI -- although I have tried and been denied twice and Ive been trying for 2 1/2 yrs, but it all depends on the caseworker that gets your case and your judge. I have just been unfoturnate because I know there are other patients with CF that get SSI<hr></blockquote>
You are actually not particularly unfortunate. A lot of us have a buttload of trouble getting approved for SSI. I got approved in January of 05, but we originally applied in September of 02. So it took about 2 and a 1/2 years for me too. Try, like HollyCatheryn said, Beth Sufian. She fought my case for over two years, and she's the reason I finally won.
<hr><i>Originally posted by: <b>Anonymous</b></i>
You can always try for SSI -- although I have tried and been denied twice and Ive been trying for 2 1/2 yrs, but it all depends on the caseworker that gets your case and your judge. I have just been unfoturnate because I know there are other patients with CF that get SSI<hr></blockquote>
You are actually not particularly unfortunate. A lot of us have a buttload of trouble getting approved for SSI. I got approved in January of 05, but we originally applied in September of 02. So it took about 2 and a 1/2 years for me too. Try, like HollyCatheryn said, Beth Sufian. She fought my case for over two years, and she's the reason I finally won.
Emily65Roses
New member
<blockquote>Quote
<hr><i>Originally posted by: <b>Anonymous</b></i>
You can always try for SSI -- although I have tried and been denied twice and Ive been trying for 2 1/2 yrs, but it all depends on the caseworker that gets your case and your judge. I have just been unfoturnate because I know there are other patients with CF that get SSI<hr></blockquote>
You are actually not particularly unfortunate. A lot of us have a buttload of trouble getting approved for SSI. I got approved in January of 05, but we originally applied in September of 02. So it took about 2 and a 1/2 years for me too. Try, like HollyCatheryn said, Beth Sufian. She fought my case for over two years, and she's the reason I finally won.
<hr><i>Originally posted by: <b>Anonymous</b></i>
You can always try for SSI -- although I have tried and been denied twice and Ive been trying for 2 1/2 yrs, but it all depends on the caseworker that gets your case and your judge. I have just been unfoturnate because I know there are other patients with CF that get SSI<hr></blockquote>
You are actually not particularly unfortunate. A lot of us have a buttload of trouble getting approved for SSI. I got approved in January of 05, but we originally applied in September of 02. So it took about 2 and a 1/2 years for me too. Try, like HollyCatheryn said, Beth Sufian. She fought my case for over two years, and she's the reason I finally won.
If you want to talk to someone else before a lawyer, I am here to help out as well. Mark, my husband, and I fought for SSI/SSDI for 26/27 months before going to a hearing and getting approved. Some of the information I give out to others (because it worked SO great for us!) is available on this website, if you go back to the main page (upper L corner "click here to visit our main site") and then click on "julie's corner" but the excel spreadsheets and some other items haven't been posted yet and those are what really helped with our case-I can email those to you.
I have "advised/counseled" three others on this matter in the last year and they have all won their cases. Beth Sufian is a GREAT woman, don't get me wrong, I spoke to her a few times when Mark and I were fighting our case. But why pay a lawyer 25% of your backpay when someone will help for nothing? If you want to email, i'd be more than happy to help, <a target=new class=ftalternatingbarlinklarge href="mailto:division902@hotmail.com">division902@hotmail.com</a>
I have "advised/counseled" three others on this matter in the last year and they have all won their cases. Beth Sufian is a GREAT woman, don't get me wrong, I spoke to her a few times when Mark and I were fighting our case. But why pay a lawyer 25% of your backpay when someone will help for nothing? If you want to email, i'd be more than happy to help, <a target=new class=ftalternatingbarlinklarge href="mailto:division902@hotmail.com">division902@hotmail.com</a>