If you or your child has SMA, you’re going to need professional caregivers at some point. There are many ways to go about this process, as some SMA individuals prefer to only work with friends and family members as their PCAs, which is a system that works for many.
For this article however, we’re going to focus on going through an agency and hiring trained professionals. Here are some tips to help guide you through this process:
1. Talk with your insurance providers and social work departments.
Before you go about hiring caregivers, you’ll need to determine how many hours are allotted to you by the government. To do this, consult both your insurance provider and a qualified social worker to help build your case. Some SMA individuals need 24/7 outside assistance, while others are content with someone who can put them to bed at night and get them up and ready in the morning. Determine what kind of help you or your child needs, and communicate this to your social work representative and any other kind of independent living department that you’re working with.
The tricky component is that because the American health care system is set up the way it is, the rules and regulations for Medicaid and other insurance providers are different in each state. The same goes for other countries. The number of caregiving hours allotted to you by the government will vary depending on where you live. Try to get as many as you can, but if it’s still not enough you may have to pay for some hours out of pocket. Even if the program you’re working with only provides you with a few dozen hours a week, try to spread those hours out so that you’re at least receiving outside help for a few hours everyday.
2. Interview multiple people before hiring a caregiver.
Once you have a plan worked out with your insurance provider and social worker, you can start the interview process to hire caregivers. As you do this, feel free to interview as many people as you like. Even a dozen or two dozen interviews will allow you to determine your best options. Keep in mind that who you hire will be in charge of taking extensive care of you or your child, and you want to make sure that the person is qualified.
As you do the interviews, ask detailed questions about the candidate’s experience and skills, and if they’re capable of performing all of the duties you need them to do. Make sure that they are comfortable doing things like bathing, dressing, feeding and anything else you need help with.
3. Don’t limit yourself to one caregiving agency.
Once you hire one or more PCAs, you’ll then become a client of whichever agency they work with. If however you hire a couple people from different agencies, that’s OK. In fact, it kind of helps to work with a couple agencies so that you have multiple options. If one agency turns out to be not that helpful, then you have a backup if you’re looking to hire someone else. The most important thing is that you have PCAs you’re comfortable with and who provide you with quality care. If you need multiple agencies to make that happen, that’s OK.
4. Be prepared to adapt when caregivers leave or don’t work out.
As you start this process, one of the biggest things to keep in mind is that caregiving isn’t a career job. In the medical field it’s more of a gateway toward nursing or some other profession; and other people simply use it as a way to pay the bills before moving on to their careers. That said, even the best PCAs aren’t going to stick around forever. Be prepared for when this happens, or for when a caregiver simply doesn’t work out and you have to let them go. Like every other aspect of life with SMA, hiring outside help is all about adaptation.
For more information about caregiving services, visit your local independent living centers and consult resources like Cure SMA to seek advice from other SMA families.
SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.