Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Hi! I posted this a while ago and definitely have smoothed my program out since then, but would still love to compare notes if you don't mind.I use self-directed care through Medicaid for home caregivers.
Hi! I posted this a while ago and definitely have smoothed my program out since then, but would still love to compare notes if you don't mind.
I think we may be rarities. I've met very few people with cfs/me with home care at all, and fewer with self directed care.
I'm currently struggling to get my insurance company to fit my needs into their assessment for hours (which doesn't take into account things like PEM). How have you dealt with this?
How many hours do you receive? How do you schedule it out? What do you do about coverage when someone is ill?
If I were in your situation, I try would getting in touch with my casewoker or whoever did the original intake on me and say "I am curious how this program works. Can I ask you a few questions? How are the hours decided? Where can I see a copy of the manual or policy used for assessment and determining hours? What are the criteria for increasing hours?" It has been my experience that often a social worker or casewoker will be willing to point you in the right direction for finding a policy on something if you ask.
thanks kitkat for those questions as they are ones i need to ask as i keep being hit with being told its against my states disability service policy to give support for me/cfs but im yet to see how they are coming up with this in writing so i only get 5hrs suppport a week for aspergers.. and no extra time given when my state is such that i use a wheelchair when i leave house