It can be nerve-wracking to think of handing off your child’s care to anyone — let alone a relative stranger. But with preparation, you can find a respite caregiver who will help your child thrive and give you a chance to rest. If you’re working with a respite center or agency, you might have less control over which of their staff cares for your child, so it’s more important to vet the organization as a whole. On the other hand, if you’re independently hiring a respite worker or personal care assistant (PCA), you will be able to choose exactly who cares for your child — though you may have to put more effort into recruiting and training the right person.
Either way, it’s important to check out prospective respite caregivers before you need them. Depending on your child’s age and abilities, you should include them in this process as much as possible. Even very young children can express strong likes or dislikes, and the same goes for or older children who are nonverbal or intellectually disabled. See how your child reacts to a prospective caregiver or facility, and if you can, talk it over with them before making a decision. This can be good practice for both of you for when they become older and more independent.
Here are some things to keep in mind when interviewing with a prospective respite caregivers.
Day Programs, Overnight Respite Centers and Day Camps
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Staffing: Are the staff familiar with your child’s care needs? If so, are all staff trained on the types of care your child needs — ventilator care, catheter or tracheotomy care, g-tube or PICC line care, etc — or are only a few staff members certified to do these tasks? Will your child have to wait for a certified staff member if they need to use the restroom? Will staff support your child’s religious, ethnic, gender or sexual identity? Will they call them by the name they prefer?
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Programming: Does the organization serve other children similar to yours in age and ability? Are children grouped by age or ability, or are the groups mixed? How much supervision is there over groups of children? What activities are available? Are all activities mandatory or is there a range to choose from? How do they handle emergencies and meltdowns?
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Facilities: Are they clean, bright and accessible? Does your child feel comfortable there? Is there outdoor space your child can access? Will your child be able to bring their own items from home? If your child has sensory issues, is there private space for them to have quiet if they need it?
Interviewing Individual Caregivers
Personality and attitude. What made them interested in being a PCA? How do they view people with disabilities? Are they funny or serious, talkative or quiet, organized or scattered? Are they good listeners or do they like to take charge? How do they handle emergencies? Would your child enjoy interacting with them?
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Communication. Is the candidate open to your child’s communication style? Do they make an effort to understand what your child is saying, or look to others to interpret? Are they familiar with whatever augmented or assisted communicated device your child might use? If your child uses an text-to-speech device, or just takes a while to say things, do they wait until your child is done speaking or typing before responding?
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Personal beliefs and taboos. Does the candidate seem comfortable in your household? Will they support your or your child’s religious, ethnic, gender or sexual identities? Do they address you or your child by the names you prefer?
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Prior experience. Some parents prefer to hire PCAs with experience working with children with disabilities, while others prefer to start with a blank slate rather than have to “unteach” old habits. Either way, it’s good to ask about the PCA’s past work experiences. Get references if you can!
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Ability to learn and follow direction. Can the candidate quickly learn new routines or specific skills? Is it easy for them to memorize a sequence of actions? Try giving them a small task and see if they can follow the instructions.
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Dependability and other obligations. Can the candidate commit to working regular respite shifts for a period of time — say three months or more? Can they be on call to show up on short notice in case of an emergency? Do they have other obligations in their own lives, like children or an elderly relative, which might take precedence or call them away to attend to emergencies of their own?
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Job expectations. Are there any duties the candidate will not or cannot do? Can they physically lift, transfer or reposition your child if need be? Do they have allergies that would interfere with them helping at mealtimes? Are they comfortable assisting your child in intimate tasks like using the toilet, or inserting a tampon, if necessary?
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Medical experience and skills. In some cases, care that is routine for people with disabilities and their families — such as trach care, ventilator care, g-tube and PICC line care — may be considered “skilled medical care” by Medicaid and/or care providers. This may vary by state and/or agency, so it’s important to check on this if you need this kind of service.
Asking the questions above will help you find the right respite caregiver for your family’s unique situation.
After the Interview
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Contact all references. Ask about reliability, professionalism, specific duties, strengths and weaknesses.
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Have a criminal background check and driving record check conducted.
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If you decide to hire them, it may help to draw up an agreement outlining what duties, shifts and responsibilities you may expect them to handle. There’s more about managing respite caregivers in the next chapter.
Lisa Tabachnick Hotta writes about parenting, health, and social issues.
