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My Goals

Become more functional
Depend on friends for more appropriate things
Have a better quality of life
Those are my 3 primary goals right now, and I think they might resonate with other disabled folks. This isn't going to be a blog that tells you easy steps to achieve these goals. I can't tell you how to do something that I haven't done myself. I'm just going to talk about my situation and the steps I plan to take to try to accomplish these 3 things. Hopefully, some of what I write will be applicable to your situation, too.

This quest started with a tough conversation with my roommate. She said that I cannot live independently, and it's been falling to her and my friends to pick up the slack in my ability to care for myself. They've been helping with household tasks, staying with me when I'm not safe to myself, communicating at appointments, picking up financial slack, and more. These duties should fall to professionals who are paid to do them, but, although I have some professional support, it's not enough. Meanwhile, I'm trying my hardest to manage myself at my current level of support, but my mental and physical health have not allowed it of late.

Big steps: I brought these concerns to my support team, and we decided that a group home is the right level of support for my needs. My team is looking for openings in good group homes now. Meanwhile, I'm completing all necessary steps to start receiving SSI and should get it within the next few months. I'm already approved, but we're still in the amount determination phase. My doctor put in an order for nursing and aide care, and my case manager is following up to try to find out why nobody has gotten back to us about it. The hardest thing I need to do is shift around how I'm using the people I have for support so that my case manager is taking me to some of my appointments, freeing my autism coach to help with housework. I'm not at all comfortable going into the community with my case manager.

Small steps: Meanwhile, there are some smaller steps that I've already been able to take towards these goals. I've instituted a structured daily schedule that helps me be more functional. I've set up a meeting with ExactCare pharmacy to receive my pills in pouches for each dosage time, eliminating the need for someone on my support team to fill my pill boxes. This frees up support for other things and helps me be more medication compliant, since my support makes a lot of mistakes with my pills. I'm also following up regularly about SSI, the group home, and the nursing care.

Barriers: The main things that are getting in the way of achieving the goals of being more functional, depending on my friends for more appropriate things, and having a better quality of life are mental instability, autism, physical illness, dislike of change, lack of support, and the need to care for my dog. For instance, some days, my chronic illnesses mean I need to stay in bed and cannot follow the structured schedule I have set up. Also, I haven't yet shifted around how I'm using my aides due to dislike of change and fear of going into the community without one of my "safe people." And caring for my dog takes all of my mental, physical, and financial resources, leaving nothing left for anything else. I'm considering re-homing her, but I love her very much. I don't know how to do much else to minimize these barriers, but I'm not going to give up on working towards my goals.

And if you take nothing else away from this blog, maybe the model of outlining big steps, small steps, and barriers to achieving goals will be helpful next time you have a goal in mind. Peace and long life!

 


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