Guest guest Posted January 18, 2008 Report Share Posted January 18, 2008 We have nursing care for ... 56 hours a week... paid for in full by his title 19, medicaid waiver..in Connecticut he is under something called the Beckett Model Waiver..and it covers in home nursing. It did take a long time to find a pediatric nurse that could work the hours we need.... but now that we have him (the nurse)... it is amazing how helpful it is to me. After 10 years of doing it all on my own... including all the sleepless nights... we have help. I had to fight alittle bit to get the help...but in Connecticut... medicaid waiver does pay for nursing. , Mom to age 10... swingline04 wrote: I was wondering if most families on this site have nursing help? We have hired someone to watch at night (5 nights a week) so we can sleep! Since we don't qualify for Medicaid (in Missouri) we pay on our own! Sincerely, In the middle of a difficulty lies opportunity. Einstein, Albert Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2008 Report Share Posted January 19, 2008 Wow!! I am very happy for you that you finally have nursing after 10 long years!!! We are on a waiting list for the waiver! I am assuming it is something similiar to the one in Connecticut! A lady I know in Missouri her son went home on a ventilator w/a trach and g-button. Her son is now off the ventilator and trach, but she is still on the waiting list (after 2years). The kicker is her husband has a VERY good job and SOMEHOW she qualified for medicaid and has had nursing care from the beginning. Don't get me wrong I am happy that she has it. (I won't start on my soap box about that subject). We have qualified for 200 hours of respite nursing for the fiscal year. It helps, but I can use that up in 2 weeks! haha Honestly, it is like a part time job trying to figure out all the different programs that are available out there. My boyfriend and I figured out that it will cost around $50K per year to have night nursing and some intermediate relief during the day! How does anyone afford that??? Anyway, I am glad to know that we're not the only one's that fall into the " middle of the road " category! Re: re: nursing help We have nursing care for ... 56 hours a week... paid for in full by his title 19, medicaid waiver..in Connecticut he is under something called the Beckett Model Waiver..and it covers in home nursing. It did take a long time to find a pediatric nurse that could work the hours we need.... but now that we have him (the nurse)... it is amazing how helpful it is to me. After 10 years of doing it all on my own... including all the sleepless nights... we have help. I had to fight alittle bit to get the help...but in Connecticut. .. medicaid waiver does pay for nursing. , Mom to age 10... swingline04 <swingline04@ yahoo.com> wrote: I was wondering if most families on this site have nursing help? We have hired someone to watch at night (5 nights a week) so we can sleep! Since we don't qualify for Medicaid (in Missouri) we pay on our own! Sincerely, In the middle of a difficulty lies opportunity. Einstein, Albert Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2008 Report Share Posted January 19, 2008 Hang in there.... the one thing about the medicaid waiver...is that it is based on the child's income...and need... NOT the parents... that's how people qualify. But since being on the waiver, we have nursing, equipment, medication...and home therapy... all provided ... oh and it also pays for the diapers and formula...( is on Neocate)... It is no easy road...and as they get bigger..the issues keep coming... but do your homework and networking locally...because someone knows about a grant or something that you may not... I have had thousands of dollars for different things over years through local grants, private foundations, and tenacious homework., I actually had someone at the office of social services tell me that we made too much money to qualify for social security... but if I had one more baby... we would fall into the category. DUH....like that was the stupidest thing I ever heard. I have 3 kids already that are more than enough...and I am 41. I'm sure she meant well... but that just goes to show you how screwed up our system is. My best to you.... Mom to ... age 10, bilateral diffuse PMG wrote: Wow!! I am very happy for you that you finally have nursing after 10 long years!!! We are on a waiting list for the waiver! I am assuming it is something similiar to the one in Connecticut! A lady I know in Missouri her son went home on a ventilator w/a trach and g-button. Her son is now off the ventilator and trach, but she is still on the waiting list (after 2years). The kicker is her husband has a VERY good job and SOMEHOW she qualified for medicaid and has had nursing care from the beginning. Don't get me wrong I am happy that she has it. (I won't start on my soap box about that subject). We have qualified for 200 hours of respite nursing for the fiscal year. It helps, but I can use that up in 2 weeks! haha Honestly, it is like a part time job trying to figure out all the different programs that are available out there. My boyfriend and I figured out that it will cost around $50K per year to have night nursing and some intermediate relief during the day! How does anyone afford that??? Anyway, I am glad to know that we're not the only one's that fall into the " middle of the road " category! Re: re: nursing help We have nursing care for ... 56 hours a week... paid for in full by his title 19, medicaid waiver..in Connecticut he is under something called the Beckett Model Waiver..and it covers in home nursing. It did take a long time to find a pediatric nurse that could work the hours we need.... but now that we have him (the nurse)... it is amazing how helpful it is to me. After 10 years of doing it all on my own... including all the sleepless nights... we have help. I had to fight alittle bit to get the help...but in Connecticut. .. medicaid waiver does pay for nursing. , Mom to age 10... swingline04 <swingline04@ yahoo.com> wrote: I was wondering if most families on this site have nursing help? We have hired someone to watch at night (5 nights a week) so we can sleep! Since we don't qualify for Medicaid (in Missouri) we pay on our own! Sincerely, In the middle of a difficulty lies opportunity. Einstein, Albert Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2008 Report Share Posted January 22, 2008 Hi , We just got Medicaid for Aiden. Does his pediatrician have to be the one to order everything? Is the Medicaid his primary insurance or secondary insurance? We just got it so we are still new to how it works. Thank you for any info you can give. a JULIE HASSELBERGER wrote: Hang in there.... the one thing about the medicaid waiver...is that it is based on the child's income...and need... NOT the parents... that's how people qualify. But since being on the waiver, we have nursing, equipment, medication...and home therapy... all provided ... oh and it also pays for the diapers and formula...( is on Neocate)... It is no easy road...and as they get bigger..the issues keep coming... but do your homework and networking locally...because someone knows about a grant or something that you may not... I have had thousands of dollars for different things over years through local grants, private foundations, and tenacious homework., I actually had someone at the office of social services tell me that we made too much money to qualify for social security... but if I had one more baby... we would fall into the category. DUH....like that was the stupidest thing I ever heard. I have 3 kids already that are more than enough...and I am 41. I'm sure she meant well... but that just goes to show you how screwed up our system is. My best to you.... Mom to ... age 10, bilateral diffuse PMG wrote: Wow!! I am very happy for you that you finally have nursing after 10 long years!!! We are on a waiting list for the waiver! I am assuming it is something similiar to the one in Connecticut! A lady I know in Missouri her son went home on a ventilator w/a trach and g-button. Her son is now off the ventilator and trach, but she is still on the waiting list (after 2years). The kicker is her husband has a VERY good job and SOMEHOW she qualified for medicaid and has had nursing care from the beginning. Don't get me wrong I am happy that she has it. (I won't start on my soap box about that subject). We have qualified for 200 hours of respite nursing for the fiscal year. It helps, but I can use that up in 2 weeks! haha Honestly, it is like a part time job trying to figure out all the different programs that are available out there. My boyfriend and I figured out that it will cost around $50K per year to have night nursing and some intermediate relief during the day! How does anyone afford that??? Anyway, I am glad to know that we're not the only one's that fall into the " middle of the road " category! Re: re: nursing help We have nursing care for ... 56 hours a week... paid for in full by his title 19, medicaid waiver..in Connecticut he is under something called the Beckett Model Waiver..and it covers in home nursing. It did take a long time to find a pediatric nurse that could work the hours we need.... but now that we have him (the nurse)... it is amazing how helpful it is to me. After 10 years of doing it all on my own... including all the sleepless nights... we have help. I had to fight alittle bit to get the help...but in Connecticut. .. medicaid waiver does pay for nursing. , Mom to age 10... swingline04 <swingline04@ yahoo.com> wrote: I was wondering if most families on this site have nursing help? We have hired someone to watch at night (5 nights a week) so we can sleep! Since we don't qualify for Medicaid (in Missouri) we pay on our own! Sincerely, In the middle of a difficulty lies opportunity. Einstein, Albert Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2008 Report Share Posted January 23, 2008 - I gather you are from Missouri. We are from St. Louis, Missouri. I would love the opportunity to exchange ideas and other ways of help in Missouri. Please let me know if you would like to contact me or I could call you sometime too. Thanks and hope to hear from you soon, (mother to Mikayla, 23 months old, PMG) > Hi , > We just got Medicaid for Aiden. Does his pediatrician have to be the one > to order everything? Is the Medicaid his primary insurance or secondary > insurance? > We just got it so we are still new to how it works. > Thank you for any info you can give. > > a > > JULIE HASSELBERGER <jhasselberger@... <jhasselberger%40snet.net>> > wrote: > Hang in there.... the one thing about the medicaid waiver...is that it is > based on the child's income...and need... NOT the parents... that's how > people qualify. But since being on the waiver, we have nursing, equipment, > medication...and home therapy... all provided ... oh and it also pays for > the diapers and formula...( is on Neocate)... > > It is no easy road...and as they get bigger..the issues keep coming... but > do your homework and networking locally...because someone knows about a > grant or something that you may not... I have had thousands of dollars for > different things over years through local grants, private foundations, and > tenacious homework., > > I actually had someone at the office of social services tell me that we > made too much money to qualify for social security... but if I had > one more baby... we would fall into the category. DUH....like that was the > stupidest thing I ever heard. I have 3 kids already that are more than > enough...and I am 41. I'm sure she meant well... but that just goes to show > you how screwed up our system is. > > My best to you.... Mom to ... age 10, bilateral diffuse PMG > > <swingline04@... <swingline04%40yahoo.com>> wrote: > Wow!! I am very happy for you that you finally have nursing after 10 long > years!!! > We are on a waiting list for the waiver! I am assuming it is > something similiar to the one in Connecticut! > A lady I know in Missouri her son went home on a ventilator w/a trach and > g-button. Her son is now off the ventilator and trach, but she is still on > the waiting list (after 2years). The kicker is her husband has a VERY good > job and SOMEHOW she qualified for medicaid and has had nursing care from the > beginning. Don't get me wrong I am happy that she has it. (I won't start on > my soap box about that subject). We have qualified for 200 hours of respite > nursing for the fiscal year. It helps, but I can use that up in 2 weeks! > haha > Honestly, it is like a part time job trying to figure out all the > different programs that are available out there. > My boyfriend and I figured out that it will cost around $50K per year to > have night nursing and some intermediate relief during the day! How does > anyone afford that??? Anyway, I am glad to know that we're not the only > one's that fall into the " middle of the road " category! > > Re: re: nursing help > > We have nursing care for ... 56 hours a week... paid for in full by > his title 19, medicaid waiver..in Connecticut he is under something called > the Beckett Model Waiver..and it covers in home nursing. > > It did take a long time to find a pediatric nurse that could work the > hours we need.... but now that we have him (the nurse)... it is amazing how > helpful it is to me. > > After 10 years of doing it all on my own... including all the sleepless > nights... we have help. > > I had to fight alittle bit to get the help...but in Connecticut. .. > medicaid waiver does pay for nursing. > > , Mom to age 10... > > swingline04 <swingline04@ yahoo.com> wrote: > I was wondering if most families on this site have nursing help? > We have hired someone to watch at night (5 nights a week) so we > can sleep! Since we don't qualify for Medicaid (in Missouri) we pay on > our own! > > Sincerely, > > > > In the middle of a difficulty lies opportunity. > Einstein, Albert > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2008 Report Share Posted January 23, 2008 Hi, I was reading your e-mails about medicaid. I'm living in St. louis,too! I also would be interested in talking! (mother of 5months-unilateral pmg) Re: re: nursing help > > We have nursing care for ... 56 hours a week... paid for in full by > his title 19, medicaid waiver..in Connecticut he is under something called > the Beckett Model Waiver..and it covers in home nursing. > > It did take a long time to find a pediatric nurse that could work the > hours we need.... but now that we have him (the nurse)... it is amazing how > helpful it is to me. > > After 10 years of doing it all on my own... including all the sleepless > nights... we have help. > > I had to fight alittle bit to get the help...but in Connecticut. .. > medicaid waiver does pay for nursing. > > , Mom to age 10... > > swingline04 <swingline04@ yahoo.com> wrote: > I was wondering if most families on this site have nursing help? > We have hired someone to watch at night (5 nights a week) so we > can sleep! Since we don't qualify for Medicaid (in Missouri) we pay on > our own! > > Sincerely, > > > > In the middle of a difficulty lies opportunity. > Einstein, Albert > > Quote Link to comment Share on other sites More sharing options...
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