If it isnt 1 thing its 20..so frustrated

[Mandyintn123]

so it isnt enough that my mom has a terminal illness just a mere 4 months after my grandmother passed away. We cant seem to get any help at all and I am feeling more and more that we are not in the right place or looking in the right places for answers... Mom spent the past 14 years caring for my grandmother as her sole caregiver- so obviously my mom doesnt qualify for social security disability. My dad is on a heart transplant list and gets disability (finally after fighting that for a year) its 2000 .. so they make too much money for mom to get SSI. therefor she doesnt qualify for medicare. They pay cobra premiums where my dad used to work for a blue cross blue shield plan that turns out SUCKS... moms lunch function is currently 51%. she was turned down for the bi pap machine until she is at 50% ...... I think i am losing my mind literally... anyone else gone up against this?

 

[Nikki J]

That bipap thing is ridiculous. Ask the doctor to appeal and or retest. Was that number lying down? It will be worse lying down maybe by a lot. Does she have any desire for dps. If she does it should be done with feeding tube and now. Unfortunately it could be too late. The ssdi is tough. My sister had been a sahm and was just getting ready to go back to work because her daughter was in school. If you are in Cobra I think you might be able to get an aca plan midyear as cobra termination counts as a reason. So if you quit cobra it could be an option BUT research thoroughly both that it is true and what the plans cover to see if there is a better deal. ALS is expensive. Very. And in the meantime learn everything you can about the plan rules of what she has. Look into their formulary. Look into prior authorization list

 

[Mandyintn123]

what is dps? (sorry)

 

[Nikki J]

Diaphragmatic pacemaker. The thing is you have to have a certain amount of functioning diaphragm muscle for it to work and a lot of people don't have enough by the time they try for it. It is probably already iffy for your mom to be honest and you would have to get insurance aporoval and find someone who can do the procedure

 

[Mandyintn123]

another one of those things they havnt even discussed or mentioned to us but i am guessing at this point no she wont get one

 

[Diane H]

What about the ACA (Obama care)? Sounds like she would qualify for a subsidy -- and couldn't be turned down.

 

[hjlindley]

Get a hold of your ALS social worker immediately. They have a loaner closet, they're used to getting around obstacles And they give be a great deal of help. Sorry you're going through this. I hope this little bit of advice helps you.
Hollister

 

[Barbie]

Makes me sick that the rules for disability hurt people like your mom. got some good suggestions--give it a try

 

[zoohouse]

I am so sorry that you are having to go through this. It seems criminal that there are people collecting assistance that are perfectly able to work, and people that really need it can't. Your mother saved the system money by caring for her mother. When my husband was first diagnosed he was put on short term disability and his income dropped to ¼ of what it was, and after child support was taken out he had under $200/mon. to pay rent, utilities etc. I should note that although we had been married for 1 year, we were in the process of him moving to Canada, so until he got his permanent residence card (like your green card) he stayed in the US so he could work, and I stayed in Canada so I could work. He went to apply for food stamps, but was turned down because he made too much money that year. So I flew down and packed him up and moved him to Canada so I could care for him. Even though he was not a citizen our BC ALS society totally looked after his needs, until everything was settled. There is no rhyme or rhythm.
Paulette

 

[tripete]

Mandy, do get in touch with your ALS nurse. The ALS foundation has money through the MDA to help. They just need to know that you have the need. At 50% lung function my doctor has said that I can qualify for DPS as well. You should inquire about it. Make sure they test her lung function lying down. If she is at 51% sitting, I would almost guarantee she will be much lower when prone. They can then use the prone numbers to get her help. It is crazy that most doctors do not do the lung function tests lying down.