I'm 52, have 4.5 hours in home care via the state I need more as I'm declining. I'm on SSDI. How can I find and afford more help?

I agree, contact your caseworker and ask to be re-evaluated for care. If they can't provide more hours the alternative would be Medicaid paying for a Longterm care facility. And from the problems you describe, I think that maybe where you need to be. See if ur State pays towards an Assisted Living.

I know the last place you want to be in LTC but you seem to need 24/7 care and there maybe no State agency who will to give you 24/7 aides. My GF, with Parkinsons, just went thru this last year. She was placed in rehab after a Hospital Stay. It was found she needed 24/7 care and was an unsafe discharge. Since her sons were not willing to do the care, rehab could not release her back to her apt.

You can contact your local area's Agency on Aging (even though you are not elderly) they may have resources for those with Parkinsons. If you are a member of a house of worship do put out an appeal for help with the main office.

Talk to your case manager or the state social worker and stress to them you need more help. Tell the home health workers as well. If they see that you are not safe by yourself they should be reporting this to APS. The solution though may not necessarily be what you want though. Instead of more in home help, they may want to place you in a nursing home, which is ultimately what you will need as your Parkinson's progresses.