Navigating Personal Care: Identifying Needs and Negotiables

By: Kristen Williams

If you’ve ever been a personal care client, you know the frustration that can come with relying on others in order to get your needs met. Depending on the specifics of your care situation, you might face unknowns regularly (such as who will show up, if anyone, and when…) These unknowns make it hard to navigate care, but - thankfully - not everything has to be left solely at the mercy of the unpredictable care gods. Knowing your care needs and negotiables, as well as having a general sense of how your care program works can go a long way when dealing with precarious care.

Know Your Needs

Part of relying on others for care involves understanding that everyone has their own needs and limitations, client and staff alike. That human element is what makes it imperative that, as clients, we know what we can’t go without care-wise, and communicate that clearly.

By way of example, let’s say your care usually involves help with medication. To determine whether taking this med is a must when staff are rushed, ask yourself if this is something you can safely and reliably do independently. If so, that assistance is likely not a need but a negotiable. If taking the medication is time-sensitive (and you can’t take it independently), then that’s a need, and should be noted as such in your care plan.

Know Your Negotiables

On the other hand, you know those helpful tasks that make your life easier, but that you can waste energy on if need-be? Those are your care negotiables. They’re the tasks you benefit from having help with, but can ultimately do yourself. Care negotiables look different for everyone, and knowing yours can allow you to prioritize more important elements of care in the interest of saving time. For example, you might ask an attendant to do your dishes instead of helping you make breakfast, since you can make breakfast on your own (albeit with some effort).

Whether a need or negotiable, it’s crucial that you know what your care entails and how to ask for it. This means memorizing your care routine and feeling comfortable directing others to complete tasks on your behalf.

Know Your Care Program

Though there are many similarities in care providers, notable distinctions may exist in how each is run, and how this, in turn, impacts your care. Understanding your care program and how it operates – e.g., whether it’s through Direct Funding or an agency – can help you navigate when problems arise and get to a solution faster. This means you will be comfortable taking your complaints (or praise!) to the right person, as well as shedding light on issues that are structural as opposed to those that are specific to you as an individual.

All in all, personal care is a complicated, ever-changing service. And knowing as much as you can about the needs and negotiables of your specific care, and the program in which it runs, can make a complex situation (and your life) that much easier.

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Kristen Williams is a counselor who specializes in trauma-informed support for individuals with disabilities. She is enrolling to do her Masters in psychotherapy this fall and enjoys listening to too many comedy podcast episodes in her free time.

You can contact her for support or information at kristen.williams10@gmail.com or reach out on Twitter, @kdub155.