Consumer Chaos: My Experience with Consumer- Directed Care So Far:

Dear Readers~

Happy New Year to my readers both new and old. As I’m writing this, I can hardly believe it’s 2019. Where did the last year go? Although I have been really busy with my YouTube channel and getting consumer-directed care all squared away, my blog has kind of taken a backseat. In all honesty, I had no idea what I was getting into when I decided to embark on this new adventure of directing my own care.

True, I’ve had my share of ups and downs with agency-directed care- including those who could not understand English enough to take my direction and almost burnt the house down or those who just had their problems getting paid by the agency on a timely basis and therefore quit on me several times a month. You name it I’ve probably dealt with it. Still, agencies had their pick of personal assistance already vetted and could send them to me within a couple of weeks.

Now, I’m stuck doing the entire process on my own. Granted, I do have a consumer facilitator offering me suggestions on where to put my job openings out there, and he is great. One of the places to locate caregivers is This site basically allows consumers to search for personal care assistants based on their needs and hours. But if I’m being honest it sometimes feels like I’m putting myself out there on a dating site; if it doesn’t have enough bells and whistles on it, it doesn’t get noticed. In the meantime, my dad and mom are the main caregivers and my dad has even gone so far as to be hired by me through a website so that I don’t lose my hours through Medicaid. 

The problem is that the hiring process is so long and drawn out; it’s difficult to have to mail papers back and forth to make sure my dad is vetted. I mean, he’s my dad. I know him and trust him with my life!

I have even gone as far as putting my job openings on out-of-the-box websites such as The difficulty with these websites is that most people want more money for their time and it is not covered. I mean I don’t blame them, taking care of a person with special needs is hard work and takes dedication. But paying out of pocket is difficult and not a good long-term solution.

Still, that’s what I’m doing at the moment paying out-of-pocket for someone to come twice a week during the day. My parents need a break.

I pray as I continue along this journey that the right person comes along- someone who cares about people and who loves their job. I know God will put the right person in my life at the right time. In the meantime I remain patient, knowing that everyone who comes in contact with me does so for a reason- even if they don’t know it.

I would appreciate all the prayers possible and positive vibes as I don’t know what the new year will bring. But God does… And that’s enough!


PS. Feel free to share your personal care journey in the comments below. I would appreciate knowing I’m not alone in the process!

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