Where can I go to live after I am vented?

[acenoface]

I have been lucky so far. I was diagnosed in February 2005, but I can still operate a computer with a touch pad, and my voice is still strong. But I know my luck can't hold out forever. I have been living with my parents since the diagnosis. I am 38 and they are 67 and 71. There is no way that either of them will be able to take over providing care for me when it comes to working with the ventilation system or the feeding tube (I don't have these yet but I would want them when the time comes). I live in Michigan, and I have Medicare, Blue Cross and Medicaid. Medicaid currently provides for home health care to take care of my ADL. The program I have with them will pay for nursing in the home care, but they will not cover 24 hour coverage.

Should I be looking in to finding a nursing home that takes care of ventilator patients? Is there a way to find out what Medicaid covers as far as Homecare is concerned, and what would it look like to cover the time that they won't pay for so I can get 24-hour home nursing care? Are there any options I am not thinking of?

Any advice would be appreciated.

 

[SMillheiser]

ALSGA can help

I have a consultant that I hire for situations like yours. She has been working with ALS patients for 24 yearsand is an expert navigating these waters. She'll know what your best options are. If you'd like, I can have her help you and it will be covered by one of my foundations grants. Just go to my website (ALSGuardianAngels.com) and click on grants. Scroll down to the bottom to access one of our applications.

Stu ALSGuardianAngels.com 949-488-9894

 

[Tfisher]

If someone is on a vent is there training that a caregiver can take to keep the PALS at home? Not sure if/when my mom will need or want a vent but I plan to keep her in my house if at all possible.

 

[brooksea]

YES! There is another option: Leonard Florence Center for Living - Boston!

Steve Saling has pioneered this, as he has ALS and is young like you ace. He is an architect. You need to get in touch with him.

I'm sure if you google this info you will find lots of info about this great place they are building for pALS!

 

[joelc]

If someone is on a vent is there training that a caregiver can take to keep the PALS at home? Not sure if/when my mom will need or want a vent but I plan to keep her in my house if at all possible.

Yes, you can train people and then come home. If you read some of my blogs you will get some information about what we did. Suffice it to say that it is very easy to do this - contrary to what most medical people tell you! Have people trained prior to the procedure and she will be able to come home quickly.

 

[Big Mike]

I know the state of Oregon will provide 24-hour/day in-home health care when you meet the criteria, as long as you have Medicaid. I will probably be moving there with my mom in order to receive that level of care when the time comes. Plus, my sister lives there and they have a multi-disciplinary ALS clinic in Portland.