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ccjjcc

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Joined
Jul 18, 2010
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88
Reason
Loved one DX
Diagnosis
08/2010
Country
US
State
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where it's green
Hi, boy, I sure do need help!
My brother is in another state in a nursing home and has ALS. Cant' walk or sit up or stand
by himself, but not on PEG or vent or any breathing things.

He has just been approved for SS and Medicaid where he's at; and just got approved in the
state I want to move him to (mine)

Also, the nursing home he is in is really crummy, and I don't feel like I can leave him there
even a few more days, but I may have to. They wrenched his shoulder really bad a couple
of times moving him, so now he just stays in the bed and doesn't want them to move him
to his "chair" because the pain is excruciating. That's a whole other story. I've already talked
to nursing director there, etc, already have an xray, I'm trying to get MRI and for him to be
seen by a doctor but they aren't going for it.

MEANWHILE.
Logistically, I am going to go there. I will need to get him to the airport and wait and then
on a plane. Then to the nursing home or hospital here.

I may not be able to take him right from the nursing home to the airport because they
are so bad, I am going to go there and we may need to go to the emergency room first.

I'm just overwhelmed with the logistics!
 
Help Really Need Suggestions

Hi,, I posted this under the caregiver section, but a lot of people read here and so I'm also
posting it here.....

Hi, boy, I sure do need help!
My brother is in another state in a nursing home and has ALS. Cant' walk or sit up or stand
by himself, but not on PEG or vent or any breathing things.

He has just been approved for SS and Medicaid where he's at; and just got approved in the
state I want to move him to (mine)

Also, the nursing home he is in is really crummy, and I don't feel like I can leave him there
even a few more days, but I may have to. They wrenched his shoulder really bad a couple
of times moving him (within the last week), so now he just stays in the bed and doesn't want them to move him
to his "chair" because the pain is excruciating. That's a whole other story. I've already talked
to nursing director there, etc, already have an xray, I'm trying to get MRI and for him to be
seen by a doctor but they aren't going for it.

MEANWHILE.
Logistically, I am going to go there. I will need to get him to the airport and wait and then
on a plane. Then to the nursing home or hospital here.

I may not be able to take him right from the nursing home to the airport because they
are so bad (at the nursing home) , I am going to go there and we may need to go to the emergency room first.

I'm just overwhelmed with the logistics!
 
Re: Help Really Need Suggestions

Hi ccjjcc. I read your post and then reviewed your past couple of posts and what an ordeal you and your brother have been through. I am so sorry that your brother has ALS and the two of you are separated at a time when you need to be with each other the most. You sound like a sibling that will eventually get this worked out!

I had some thoughts but first I wanted to ask about your current post. Are you saying that your brother has been approved for Medicaid in the state that you live without actually being a resident of your state or are you saying he was approved at a facility for admission?
 
Re: Help Really Need Suggestions

I'm sorry to hear about your Dad. I'm so grateful in ways that this happening with my brother has made me realize what a treasure I have in him.
You know how it is, sometimes siblings are off living their own lives and not in contact all the time. That was us. He would call sometimes and I would call sometimes, but we were in different parts of the country except when he came thru with a load, then we'd visit a few hours....All that is different now.

He HAS been approved in the state he is in, and also the state he is moving TO. I can transfer him from that nursing home to one here. If I find a
bed before I go. Sometimes there is a wait. If I cant' secure a spot before I go, I have to go anyway. Then, I would be bringing him to the hospital.

I need to get him out of the NH where he is now, but I don't know if we can go from NH to airport. He needs to have his shoulder seen and they
won't take him. How to go from ER to airplane, esp if you have tickets already (we don't) and how do you time it. And once he's out of the
nursing home, and at the ER, where do I go from there if we don't fly for a couple of days?
 
Hello hon, I'm sorry to here things are so bad for you and your brother. I live in Ill. if you think I could be of some help just let me know.
 
Re: Help Really Need Suggestions

I thought that I read he had been approved for Medicaid in your state even though he is not in your state – which is great as the states I have worked with before have required a person to establish residency first.

What nursing home will be admitting him in the state where you live? If you make plans to go get him and do not have an accepting facility, how will you care for him if the hospital will not admit him? Hospital admissions policies have changed significantly over the past decade; frankly they do not admit sick people anymore.

The hospital could discharge him from the ER to the care of the facility he came from or to you. If you refuse to take him home they may call Adult Protective Services for removing him from a facility without care arrangements made. I am not trying to be harsh just trying to highlight some potential risks.

Have you met with the nursing homes in your area? Are any of them interested that may have a male Medicaid bed opening up? My advice is to get the facility in your area to want YOU. Facilities have a difficult time getting support from family members of residents in long term care. You can be a positive for him. They will be more likely to take him if you demonstrate that you will be supportive and help with consents if he is unable, wash his clothes, meet him at the ER if they send him, accept a 3 am call if something is going on, bring in cookies for the staff, etc.

Have you spoke with your primary care doctor or another doctor regarding assuming your brother's care? If your doctor will, then the doctor may practice at local nursing homes and have some pull or contacts that can help you find placement. It does not hurt to ask. This would be a second positive for a facility to agree to accept your brother as accepting physicians are required.

Have you contacted the local ALS chapter in your area? They may have some nursing home contact information. They could possibly let you know the name of a facility or two known to have worked with pALS before and have experience and understanding.

If you don't have a facility in mind or not sure where to start, you can call the Social Services department of your local hospital and ask them what facilities accept Medicaid and are they aware of any openings. (Nursing homes will send lists of open beds they are trying to fill to local hospitals.) A social worker may also tell you which facilities are more likely to take Medicaid and which facilities to avoid.

Transporting him will be difficult. You can call the airlines and ask for a curb to curb assistance when making reservations. I have not done this in a while but essentially they would have a wheelchair available (standard wheelchair that does not offer the type of positioning and support a pALS will need) and help you progress him through ticketing and to the gate. He would then need to be transferred onto an aisle wheelchair which is extremely narrow and wheeled to a seat on the plane. You will be the one to do all of his transfers as the staff will not be allowed by the airlines to help you. You will need to work with the Nursing Home on how to do a transfer before you leave so that you can safely transfer him without hurting him or yourself. Once you land you would need to have it set up for assistance in reverse. You will also need to consider how long the flight is and if he will need to use the restroom and plan accordingly. Do you have someone to travel with you? Delta

Another option is to call a local ground ambulance company and ask them to check his Medicaid eligibility (both states) if ground transportation is covered from one nursing home to another out of state. If not, then speak with an administrator regarding a special rate. Keep in mind that a long trip would take the ambulance out of service both ways so it will be expensive but cheaper if you can work out a flat rate. Air ambulance transport is very expensive but there are companies that will provide free medical transport if you can establish a hardship. Air Charity Network

Wow this is really long and I am sure you have gone to sleep by now. There is however a lot to consider. Hope this helps you organize your thoughts more.

Dana
 
Re: Help Really Need Suggestions

I don't believe you should move your brother by plane if he is in so much pain. Moving him by ambulance would be a much more efficient and safer way to move your brother.

"Medicare covers medically necessary nonemergency services that are either
unscheduled or that are scheduled on a nonrepetitive basis under one of the following
circumstances
":

(i)For a resident of a facility who is under
the care of a physician if the amb ulance
provider or supplier obtains a written order
from the beneficiary’s attending physician,
within 48 hours after the transport, certify
ing that the medical necessity requirements
of paragraph (d)(1) of this section are met.

(iii) If the ambulance provider or supplier
is unable to obtain a signed physician
certification statement from the beneficiary’s
attending physician, a signed certification
statement must be obtained from
either the physician assistant (PA), nurse
practitioner (NP), clinical nurse specialist
(CNS), registered nurse (RN), or di scharge
planner, who has personal knowledge
of the beneficiary’s condition
at the
time the ambulance transport is ordered or
the service is furnished. This individual
must be employed by the beneficiary’s attending
physician or by the hospital or facility
where the beneficiary is being
treated and from which the beneficiary is
transported. Medicare regulations for
PAs, NPs, and CNSs apply and all applicable
State licensure laws apply; or,
(iv) If the ambulance provider or supplier
is unable to obtain the required certification
within 21 calendar days following the
date of the service, the ambulance supplier
must document its attempts to obtain the
requested certification and may then submit
the claim.
Acceptable documentation includes a
signed return receipt from the U.S. Postal
Service or other similar service that evidences
that the ambulance supplier attempted
to obtain the required signature
from the beneficiary's attending physician
or other individual named in paragraph (d)

(3)(iii) of this section. ]
(v) In all cases, the provider or supplier
must keep appropriate documentation on
file and, upon request, present it to the
contractor.


FEDERAL REGISTER, February 27, 2002
Pages 9099 – 9135.


I will pray for you and your brother.
 
Re: Help Really Need Suggestions

Thank you, I just saw the latest responses, been "at it" all day and just got home and have
to go to bed, but will read in more detail tomorrow....looks like a lot of good info to dig into.
 
Thank you, for being so kind.
 
Re: Help Really Need Suggestions

We flew my mom on Continental to Florida from Texas for experimental treatment. They did have people to help get her on and off the plane (I guess something to do with ADA requirements?). BUT my mom is rather large and in a great deal of pain due to other medical conditions so it was quite difficult. They had to get first class seats and even then it was a big mess. It can be done though. You'd have to be there with him to board the flight and help. Would he be able to handle the flight, maybe in an uncomfortable position for a while?
 
Re: Help Really Need Suggestions

Thank you for all the suggestions...

I was able to get my brother approved in my state before his arrival on a nursing home to
nursing home type transfer. His benefits in his current state wont end until after he leaves
and wont actually begin here until arrival. But there is a way to do it. I was grateful to them.

Checked out the mercy flight link. What a wonderful service. It looks like you have to be able to walk, though.

I DID call the social worker at the hosptial here for room nursing home vacancy and I'm sure
will be able to speak to her later today. It's actually the discharge planning nurse I was
referred to. Great Suggestion, thank you.

Right now I am waiting to find out from the neuro's nurse about my brother's travel. I spoke
with the hospital where he is (that's another story - he is out of the bad nursing home and we were able to get him admitted to the hospital and they are helping place him in a different nursing home for a few days or however long until I can fly him here)

Next step is to see about transportation. I talked to the nurse at the hospital to get an
up to date assessment, and she said he is a 3 person transfer. (? Never heard of that one) He isn't big - maybe 175 and 5'11", but he is not weight bearing. No use of right arm or leg. Left leg weak, can do a few things with left hand.
 
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