Help please!

melliska · 03-04-2002, 03:35 PM

Hi everybody,

I don't know exactly where to find help with this, but I'm sure someone here does (or could even help me)

This all goes back to a previous post of mine ¤ i need everyone's help please ¤ (in Cure, Care, and Life at...
http://carecure.org/forum/showthread.php?t=14274
http://carecure.org/forum/showthread.php?t=3404
http://carecure.org/forum/showthread.php?t=28545
respectively)

The boy from the post, Keith, was hurt Oct. 9th of last year. He had a lot of injuries and complications, so he wasn't able to start rehab for quite a long time.

My mom talked to his mother this morning and she said that their insurance is kicking him out of rehab March 15th. (They will only pay for 8 weeks)

Keith still has a trach and his stomach feeding tube. They just starting him eating pureed foods a week ago. (It takes him over a hour to eat a meal) He is very weak and is slowly improving, but he hasn't had much energy for rehab. (He had pneumonia again for a week in there)

The rehab told his mother he would need 24 hour care (He has a C5 injury) and they haven't taught her his cares yet. They said that he would need a nurse to care for the trach and feeding tube also.

He's covered under his father for insurance (his parents are divorced) but they won't speak to her so she's having a hard time dealing with them. (I wonder why...grrrr) There is also some question about him having Title 19 (Medicaid) (They pay for my aide because my insurance won't and his insurance doesn't cover aides either)

Does anyone have any ideas on where they can go for help? I personally think he needs more rehab, but I could just be projecting my rehab inadequacies on his rehab. I do, however, know that his mother needs to be taught his cares properly.

Then there is the caregiver problem. If he can't get Title 19 to pay for aides, does anyone know where we can contact for help?

Also, does anyone know how his mom should handle getting equipment? I don't think they've ordered his chair yet (I'll double check on that) and he'll need a bed, etc. Is there someway she can get the insurance to communicate with her or is she just stuck with it the way it is?

After he gets home, I'm going to try to help with the school angle too. Vocational Rehab said they can't help him with a PC or voice software (I'd give him mine when I get it, but I'm guessing they'd be way pissed off) but I'm sure there must be some resources to help him finish high school. He has a tutor at rehab and has been using voice software there so hopefully he's gotten some work done in case it takes awhile to get started at home.

I called my favorite DHS girl and she said she'll call his mother tomorrow. Paul also helped (thanks Paul) and I'm going to wrack your brains too B

I got a call from Voc Rehab about my computer (it's all going very well), but it's not very exciting since I'm worried about Keith. They have already put a ramp on the house, so the poor family is going to have to expect me (once they're ready of course. I wouldn't want to scare the poor boy)

Thanks everybody. Your collective knowledge has got to be the biggest pool on Earth. thanks, Melissa

Life is a lesson you learn when you're through.

SCI-Nurse · 03-04-2002, 04:34 PM

1. See if he is eligible for a Shriner's Children's Hospital SCI rehab program (I believe their closest would be in Chicago). This is a ways to travel, but if he is eligible it would be far and away the best solution.

2. The family needs to sit down with the team and insist on getting trained in all his care, including trach care, suctioning and tube feeding NOW. Call the patient advocate at the hospital to help with getting this set up. Only after they have learned how to do this can they decide if going home will work for them. The family has the right to do this care themselves or hire attendants. The team cannot determine that family is not "allowed" to learn this care. It looks to me like this team is being very negligent in their management of this patient's rehab.

3. Demand that the social worker sit down and explain benefit programs in their state such as attendant care services and home nursing. Some states have special programs for disabled children under the age of 21. It is the social worker's job to help them exhaust all resources, and to help them with applications, etc. This cannot wait.

4. Have the social worker (again, their JOB) find out what home care skilled nursing services he will be eligible for through his insurance. This may include at least part time care due to his trach and tube feeding. The social worker (or case manager) should also be talking to the insurance company about the details of his DME coverage so that an appropriate wheelchair and bed can be ordered in sufficient time.

5. File an appeal with the insurance company for the day limitation. Exceptions can be made for everything. Every company has a different process. Fax them a message stating you need the forms for an appeal, fax them back with a statement that a written response is required within 3 days. Request that ONLY a SCI/Rehab specialist physician review the appeal (they must provide this if requested).

6. If not done already, the mother needs to follow through in filing an application for an IEP through their school system. For children this age, this is the process to go through to get appropriate education and supports (such as tutors, aides to go to school with him, computer support, etc.). Generally DVR does not get involved until after age 21 or graduation from high school (whichever comes first). This should also be done soon as the process takes some time and is often ponderous.

I hope this helps some. It is a very sad situation.

(KLD)

melliska · 03-05-2002, 05:12 PM

Thanks so much, KLD. You're a lifesaver yet again

Keith's mom should have all this information in writing in the next day or so, but I had the chance to talk to her last night and I told her most of it.

Thanks, Melissa

Life is a lesson you learn when you're through.

03-04-2002, 03:35 PM	#1
melliska Senior Member Join Date: Jul 2001 Location: Iowa Posts: 283	Help please! Hi everybody, I don't know exactly where to find help with this, but I'm sure someone here does (or could even help me) This all goes back to a previous post of mine ¤ i need everyone's help please ¤ (in Cure, Care, and Life at... http://carecure.org/forum/showthread.php?t=14274 http://carecure.org/forum/showthread.php?t=3404 http://carecure.org/forum/showthread.php?t=28545 respectively) The boy from the post, Keith, was hurt Oct. 9th of last year. He had a lot of injuries and complications, so he wasn't able to start rehab for quite a long time. My mom talked to his mother this morning and she said that their insurance is kicking him out of rehab March 15th. (They will only pay for 8 weeks) Keith still has a trach and his stomach feeding tube. They just starting him eating pureed foods a week ago. (It takes him over a hour to eat a meal) He is very weak and is slowly improving, but he hasn't had much energy for rehab. (He had pneumonia again for a week in there) The rehab told his mother he would need 24 hour care (He has a C5 injury) and they haven't taught her his cares yet. They said that he would need a nurse to care for the trach and feeding tube also. He's covered under his father for insurance (his parents are divorced) but they won't speak to her so she's having a hard time dealing with them. (I wonder why...grrrr) There is also some question about him having Title 19 (Medicaid) (They pay for my aide because my insurance won't and his insurance doesn't cover aides either) Does anyone have any ideas on where they can go for help? I personally think he needs more rehab, but I could just be projecting my rehab inadequacies on his rehab. I do, however, know that his mother needs to be taught his cares properly. Then there is the caregiver problem. If he can't get Title 19 to pay for aides, does anyone know where we can contact for help? Also, does anyone know how his mom should handle getting equipment? I don't think they've ordered his chair yet (I'll double check on that) and he'll need a bed, etc. Is there someway she can get the insurance to communicate with her or is she just stuck with it the way it is? After he gets home, I'm going to try to help with the school angle too. Vocational Rehab said they can't help him with a PC or voice software (I'd give him mine when I get it, but I'm guessing they'd be way pissed off) but I'm sure there must be some resources to help him finish high school. He has a tutor at rehab and has been using voice software there so hopefully he's gotten some work done in case it takes awhile to get started at home. I called my favorite DHS girl and she said she'll call his mother tomorrow. Paul also helped (thanks Paul) and I'm going to wrack your brains too B I got a call from Voc Rehab about my computer (it's all going very well), but it's not very exciting since I'm worried about Keith. They have already put a ramp on the house, so the poor family is going to have to expect me (once they're ready of course. I wouldn't want to scare the poor boy) Thanks everybody. Your collective knowledge has got to be the biggest pool on Earth. thanks, Melissa Life is a lesson you learn when you're through.

03-04-2002, 04:34 PM	#2
SCI-Nurse Moderator Join Date: Jul 2001 Location: USA Posts: 41,331	Some suggestions 1. See if he is eligible for a Shriner's Children's Hospital SCI rehab program (I believe their closest would be in Chicago). This is a ways to travel, but if he is eligible it would be far and away the best solution. 2. The family needs to sit down with the team and insist on getting trained in all his care, including trach care, suctioning and tube feeding NOW. Call the patient advocate at the hospital to help with getting this set up. Only after they have learned how to do this can they decide if going home will work for them. The family has the right to do this care themselves or hire attendants. The team cannot determine that family is not "allowed" to learn this care. It looks to me like this team is being very negligent in their management of this patient's rehab. 3. Demand that the social worker sit down and explain benefit programs in their state such as attendant care services and home nursing. Some states have special programs for disabled children under the age of 21. It is the social worker's job to help them exhaust all resources, and to help them with applications, etc. This cannot wait. 4. Have the social worker (again, their JOB) find out what home care skilled nursing services he will be eligible for through his insurance. This may include at least part time care due to his trach and tube feeding. The social worker (or case manager) should also be talking to the insurance company about the details of his DME coverage so that an appropriate wheelchair and bed can be ordered in sufficient time. 5. File an appeal with the insurance company for the day limitation. Exceptions can be made for everything. Every company has a different process. Fax them a message stating you need the forms for an appeal, fax them back with a statement that a written response is required within 3 days. Request that ONLY a SCI/Rehab specialist physician review the appeal (they must provide this if requested). 6. If not done already, the mother needs to follow through in filing an application for an IEP through their school system. For children this age, this is the process to go through to get appropriate education and supports (such as tutors, aides to go to school with him, computer support, etc.). Generally DVR does not get involved until after age 21 or graduation from high school (whichever comes first). This should also be done soon as the process takes some time and is often ponderous. I hope this helps some. It is a very sad situation. (KLD)

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03-05-2002, 05:12 PM	#3
melliska Senior Member Join Date: Jul 2001 Location: Iowa Posts: 283	Thanks so much, KLD. You're a lifesaver yet again Keith's mom should have all this information in writing in the next day or so, but I had the chance to talk to her last night and I told her most of it. Thanks, Melissa Life is a lesson you learn when you're through.