As we noted in the first chapter, adults with disabilities access professional care in all kinds of ways and combinations. Whether a disabled person hires a professional caregiver for a few hours a day, lives in a group home with support staff, or wrangles a full-time roster of caregivers, using professional care can require real management skills.
In addition, the relationship between a person with disabilities and their professional caregivers is a unique one. It can be professional, but it’s much more intimate than a typical boss-employee relationship. Strong friendships can develop, but most people don’t give instructions — or paychecks! — to their friends. It can take a lot of practice to negotiate these overlapping categories.
It’s important to remember that while it’s good for professinal caregivers to be happy and to enjoy their jobs, ultimately they’re there to help the person with disabilities be happy, stay healthy, and live their life. The disabled person’s needs come first.
Establishing Expectations with Personal Care Assistants
Whether hiring a personal care assistant (PCA) through an agency or independently (also called self-directed care), it’s important to to establish up front what both parties expect the job to be like. Here are some ways to start off on the right page.
1. Draft a written agreement: A good idea when first hiring PCAs is to make up a written agreement for both parties to sign. This agreement can specify or list:
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The hours the PCA will work
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The specific tasks they may be asked to do
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How much notice they must give if they need to cancel a shift
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Their responsibilities if there’s a medical emergency during a shift
The agreement may also include rules for what the PCA can expect from their employer, such as how much notice they can expect if they’re asked to change a shift, etc.
Here’s a sample agreement that the State of Massachusetts uses (pdf), but many people also make their own. These agreements may not be legally binding, but they help to make sure everyone is on the same page from Day One.
2. Make a manual of care: A person with disabilities may have specific tasks that they may want PCAs to perform in a specific way. It can be as common a task as positioning a mug in their hands, or lifting them out of bed and into a wheelchair. It could be as delicate as changing a catheter or suctioning a tracheotomy stoma. Sometimes, even simple tasks can have serious ramifications if not performed precisely — lifting someone the wrong way could break a rib. But it could also be that a disabled person just wants things done their way — and that’s fine too. That’s what PCAs are for.
It may help to create a manual outlining the steps of each task. New PCAs can go over the manual with their employer, take it home to study, and refer to it while they work. If the person accessing care is nonverbal, or unable to communicate in certain situations, a manual can also serve instead of verbal instructions.
It might feel challenging to break down familiar tasks and routines into written instructions. To see whether a set of instructions works, trying asking a friend or family member to follow the steps and see if they get it right. If they don’t, see if there’s a step missing, or if one of the steps should be described more precisely. Keep refining it until they get it right!
Checking In
Periodically, it’s a good idea to evaluate caregivers. Try reviewing the following areas:
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Relationship. Does the PCA treat the person with disabilities and their family with respect? Does the person accessing care enjoy the PCA’s company? Do they feel exhausted when the PCA leaves, or do look forward to the next shift?
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Reliability, punctuality and dependability. Is the PCA prompt? Do they frequently cancel? Does the person accessing care feel confident placing trust in them?
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Professionalism. How is the quality of the care? Does the PCA follow routines as specified? Do they rush through a task that should be done slowly? Do they dawdle on tasks that can be done quickly?
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Communication. Do both the person accessing care and their PCA feel comfortable bringing up issues with each other? Is the PCA open to constructive feedback?
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Job satisfaction. Give the PCA the opportunity to express if they’re feeling burnt-out or unsatisfied in some way with the work situation.
Evaluating Day Programs, Group Homes and Long-Term Care
If a person with a disability attends a day program, lives in a group home, or accesses another kind of long-term care facility, it’s important for them and their family to regularly evaluate whether they’re happy there. No situation is perfect, but here are some questions to ask about a residence or day program center:
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Quality and attitude of staff. Are staff members competent, friendly and dependable? Does the resident or program attendee feel comfortable asking staff for help? Are staff members there when needed? Do they give the person space to be alone sometimes? Do they respect the person’s religious, ethnic, gender and sexual identities? Do they call them the name they prefer to be called?
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Activities. Does the resident or attendee enjoy their daily routine? Do they feel free to choose activities they’re especially interested in? Do they feel bored often? Have they learned anything new lately? Gone anywhere new? Can they plan activities of their own, or do they have to follow the group?
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Communication. Are the staff and the resident/attendee’s family members on a first-name basis? Is it easy for resident/attendee to contact family when they want to? If something was wrong and they needed help, would the staff contact their family for them? If there are family members they don’t want to have contact with, does the staff respect their wishes?
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Issues. If there’s a problem between the resident/attendee and a specific staff member or resident, is there someone they trust to talk to about it? Would that person help resolve the conflict satisfactorily?
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Living Conditions. Is the space clean, bright and cheerful? Is the food good? Does the resident/attendee enjoy spending time there? Do they feel they have control over their own space or possessions? Do their family and friends enjoy visiting?
Remember
No matter what their abilities or required level of care, a person with a disability has the right to self-determination, to choose how they want to live. Even people who are nonverbal, or who have intellectual disabilities, can make their preferences known. People with disabilities should be in control of their own care to the greatest extent possible for them.
Deborah Elbaum, M.D. lives in Massachusetts and has three children.
