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New member
Mar 29, 2016
Friend was DX
A dear friend of mind has recently been diagnosed with ALS. She will have surgery next Friday as she needs help with breathing and will be placed on a ventilator. She just received word that she was approved for SSDI and Medicare. Medicaid was denied. Her husband has insurance (BCBS) through his employer. Does anyone know if Medicare will provide home health care? Does BCBS provide home health care? Currently her husband and daughter handle tube feedings 4 times a day by working around their work schedules but they will not be able to keep their jobs and provide necessary care for her while on a ventilator. Her family is overwhelmed by these issues and I am trying to assist but do not know where to start. She lives in Sunrise, Florida. I am appreciative of any assistance or guidance from those who have already begun this journey. Please provide any helpful links.
We have some Floridians who may know more about area resources, but it sounds like Medicare will be primary and if she is a dependent on her husband's policy, that will be secondary. On a vent, she will qualify for some skilled nursing care but not ongoing care at home. In reality, a vent does not require that much more "care" than being on 24/7 BiPAP once she is stable, but someone will need to be within a couple of minutes' reach at all times. Is working at home an option for either one? Where is your friend in terms of mobility?

Thank you for your prompt response. A work at home option is not available with current jobs. She currently is mobile but weak and frail.
Blue Cross Blue Shield will take primary if his work employs more than 150 people. If the company is that big Medicare takes second position. Good luck!

I am so sorry you have had to join our ranks! Has her husband and daughter checked into filing FMLA or The Family Medical Leave Act? I am not sure if all employers have to comply or if they may have already exhausted it. It does not have to be full time leave. I think that it can be set up as temporary, you may take off like three consecutive days in a row but have to return for a short period, maybe just one day before you may take three more. If need be you can also file full time. I do not remember, but I did this when my mother was ill and on hospice and I helped my father and sister take care of her.

Also have they reached out to their local MDA? I accidently tripped over this resource of help just last week. In fact they opened an ALS clinic last week in a city close to me. We visited with them today to turn in my registration paperwork. Not only did they get me registered, they gave us a huge stack of literature to go through but also volunteers that may be able to help with various stuff. Some of which may be retired nurses and such. My super awesome caregiver, my wife, has most of the material. Of course it would be different for your area.

Also some churches may have some volunteers that may be able to help. I am not sure about liabilities and stuff like that. We are going through ourselves, but we are learning quickly. Like I said we overlooked the MDA which is kind of funny because I was a volunteer firefighter for 20 years and spent many Labor Day weekends passing a boot around for MDA donations. I never associated them with ALS. It turns out they are likely going to be one of our greatest assets. Keep us updated, there are some great folks on here with a wealth of knowledge. If they don't know the answer they probably know someone who does.

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FMLA only applies to larger employers -- 50+ FTEs, I think, and after you have worked there a year. You can take days here and there, but the logistics can be difficult; it's probably not a long-term solution given the numbers. And, Hollister, I think the primary over Medicare is 100+ FTEs rather than 150. But I think the contracts can tweak this, so I wouldn't consider it an absolute either way.

The care required is not skilled and a conscientious college student could do it, if they are willing to take on PT help so they can work FT.

Most importantly, I should ask if your friend fully understands the implications of the vent, as does her family. It is a big commitment, as several people here will tell you, and doesn't always work out. It is also sometimes the case that docs recommend a trache before BiPAP has been fully leveraged, so it's something to get a second opinion about from an outside pulmo, no matter what.

Thank you. I am so appreciative for help and guidance. I pass all information along to the family who is overwhelmed.
Thank you Buckhorn, This information was so very helpful and on target. It has been forwarded to the family. Unfortunately my friend aspirated late last week and was put on a vent. The traech surgery was moved up to day. Please keep Val and her family in your prayers.
Thank you again.
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