Not Very Thankful

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I received a call today from the facility that was supposed to do a power wheelchair evaluation for my sister, who is no longer able to walk. I made the appointment 2 months ago and was so looking forward to taking her on Monday. I felt that this would be a positive step in providing independence for her. Today, just 5 days before her appointment, they called to cancel and said they don't take her insurance. They had 2 months to look at her insurance. Now...we are back to step one. I am devastated and can not even tell her this news the day before Thanksgiving. I wonder if the people that do this realize that 2 months is a LONG time for a patient with ALS... Now I need to start over....who knows how long it will take to get an appointment and power chair. Sorry to whine...I was just so looking forward to being able to do SOMETHING to help her. I feel like I am really letting her down....
 

lgelb

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I am sorry for the screwup. It is inexcusable and I would be venting too. Were you talking with an equipment firm or a clinic? Does she go to a clinic? Does she live in West Chester?

Does she have traditional Medicare? Or something else? I can help you find somewhere to get her eval done, if you can provide more details.

Best,
Laurie
 
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HI Laurie - Thank you for your kind response. My sister FINALLY agreed that she needed a power wheelchair and her neurologist said it would be a game changer for her. She was so looking forward to this as a way to provide just a little independence in this awful disease. I really don't know how to tell her. She has AARP Medicare (she is over 65 and I filled out all the documents to get her disability 2 years ago. When Bryn Mawr called, they said she needed to call her insurance and find a place that would accept insurance. I will pay for her to get this chair....I will pay for the evaluation....I just want her to have some happiness....Thank you for your response. I am feeling more thankful! I hope you have a nice Thanksgiving!
 

lgelb

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Likewise, be healthy and safe.

These two are listed as being in the United Healthcare HMO network (UHC carries the Medicare Advantage plans for AARP). I assumed the most restrictive network -- the HMO network -- not knowing whether she is in an HMO or PPO. Either should be able to work with her clinic to get her a power wheelchair, but let me know if you need other options.

National Seating & Mobility
1957 Pioneer Rd Bldg C
Huntingdon Valley, PA 19006
(215) 682-9760

Numotion
152 Keystone Dr
Montgomeryville, PA 18936
(215) 855-1777
 

affected

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I would be just as devastated, and agree that was inexcusable treatment.
Thank you so much for caring so much, and as a past CALS I can totally identify with the distress of having to give news like that to her. I hope the options Laurie has suggested will get you on the right path now.
 

nona

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This happened to me too, with Numotion. They had four months with my insurance information and canceled on the day of delivery and
said they don't use my insurance, which is one of the biggest HMOs in New England.

Could she get a loaner chair from the ALS Association? .
 

swalker

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I am really sorry you are having to deal with this.

As Nona suggested, be sure to check into getting a loaner wheelchair.

If you are going to self fund a wheelchair, be sure to consider buying a used one. For example, I purchased a new Permobil F5 out of pocket for $25,000. A good used one goes for about $5,000. I have paid as little as $800 and as much as $4,000 for used wheelchairs. I have had to put an additional $1,000 to $1,500 into each of those wheelchairs to make them fit me correctly.

I have found that working with Durable Medical Equipment (DME) companies, such as NuMotion, can be quite the headache. Find a DME that accepts your insurance. Once you have done that, I encourage you to work within that DME to find someone good to work with.

Steve
 

Jrzygrl

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I just saw your post and am guessing from some of it that you are relatively close to the Philly area?

When my husband needed a chair, we got a loaner from the Philly ALS Association. He was referred to Penn for his evaluation. They work with National Seating and Mobility. I know that Magee Renabilitation, also in Philly also gas a seating clinic, but he was able to get an appointment at Penn first. The Philly ALS assoc also has a transportation program that will take you and your PALS to and from medical appointments if you're in their region. We used it two or three times before we got a handicapped van. We had Aetna insurance at the time.

Hope this helps.
 

Jrzygrl

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Whoops - just noticed your location is West Chester PA. Definitely call the Philly ALSA. See if you can get a loaner until she gets her chair. We donated my DH's chair to them along with a lot of other equipment when he passed.
 
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Thank you to everyone. This advice is so very helpful. :)
 

Krosoff

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What you went through is just heart breaking. My sister went to the Jefferson ALS clinic. They were amazing and helped with everything. They were with us every step of the way. The neurologist was a leader in ALS research and very very kind.
They referred us to Magee and they, and ALS team dealt with the arranging for the wheelchair. Until then, the ALS Philly association provided a loaner. They also got us a lift chair which was a game changer. I would do anything to prevent even one ounce of suffering for anyone who is in this just horrible and demoralizing situation.
 
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