When To Hire A Patient Advocate For An Elderly Relative (and How To Do It)

Elder care is incredibly expensive—rooms in nursing homes and assisted-living facilities can cost upwards of $10,000 per month. And that’s before any treatments, prescriptions, or other needs are even taken into account. It’s also incredibly complicated because you often find yourself navigating multiple insurance policies, government agencies, and multiple members of a facility's staff—not to mention doctors, nurse practitioners, and other medical professionals.

On top of the financial, medical, and logistical challenges is the emotional toll that caring for an aging parent or loved one can take on us. It’s no wonder that most people wait for crises to develop before making major decisions about caring for an older loved one, whether it’s the initial decision to place them in a facility, making decisions about adding services to their care plan (with the requisite additional costs), or the need to move them to a different place with more services—and how to pay for all of it. If that’s you and your family, now’s the time to consider hiring a patient advocate or private care manager.

Why you might need a patient advocate

It’s difficult for most people to comprehend just how expensive and complicated elder care can be. Many long-term insurance policies only cover very basic expenses, and only about 75% of older Americans even have long-term care insurance at all. If your parent or loved one does have insurance, there might be multiple policies (I have one from an old job that I haven’t paid into for years but is still in force) combined with Medicare benefits—and you’ll still be forced to pay for a lot of stuff out of pocket.

This complexity is a challenge when it comes to figuring out what your parent is actually covered for—and getting various insurers to pay out. Denial rates can be difficult to assess, but just about everyone has had a seemingly obvious health insurance claim denied—and it’s not uncommon for families to be forced to appeal denials related to elder care multiple times before they finally get a service or procedure covered (you haven’t lived until you’ve had to contact a “review committee” at an insurer). A patient advocate can help sort everything out, help you craft appeal letters, and interact with healthcare professionals to get letters and medical orders written that trigger insurance coverage.

Then, things get even more complicated because these facilities churn staff like there’s no tomorrow—the average nursing home turns over more than half its staff every single year. These are really, really crappy jobs in a lot of ways—they’re emotionally and physically draining, don’t pay very well, and are often quite dangerous, so it’s no wonder nursing homes and other facilities struggle to keep staff. But that churn means that every time you get comfortable with a physical therapist, dietitian, or other caregiver at a loved one’s facility, the chances that they leave and you have to start all over again are pretty high. A patient advocate can be the point person who tracks staff and ensures your loved one doesn’t miss a beat just because someone quit.

What a patient advocate does, in summary

Simply put, a patient advocate or private care manager is a consultant who understands the laws in your area, the maze of insurance terms and mechanisms, the way Medicare and Medicaid work, and who is familiar with the assisted living and nursing home facilities near you. They can perform a lot of incredibly useful services, including:

• Translation. If you only understand half of what doctors and nurse practitioners tell you, a patient advocate can break it all down into simpler language.

• Billing. A patient advocate can help you review bills to make sure you’re overpaying and that your loved one is getting everything they’re paying for.

• Care. A patient advocate can also help you identify the type and level of care your loved one needs. Your parent might need just a little help with their daily activities, or they might need round-the-clock assistance getting to the bathroom or feeding themselves—an advocate can objectively recommend what’s necessary. And an advocate can make sure that the stressed, overworked doctors and nurses at the facility pay attention to your loved one, even when they’re swamped.

• Interaction. A patient advocate can also act as both a buffer between you and the facility’s staff and as chief negotiator, freeing you to live more of your own life while someone else argues with the nursing home’s management about how often your mom gets a shower each week.

Patient advocates can also often identify resources ranging from government programs to insurance benefits that you might otherwise not be aware of.

How to hire a patient advocate

You shouldn’t wait for a crisis to engage a patient advocate when someone you care about goes into assisted living or a nursing home; they can be a crucial benefit from day one. If you’re not sure where to find a patient advocate, you can try a few different paths:

• Insurance. Some health insurance and long-term care policies will pay for a patient advocate, so start by reviewing the coverage. If your loved one’s insurance covers it, they likely have a list of in-network or participating advocates you can contact.

• The facility. Some hospitals, nursing homes, and other facilities have a long-term care ombudsman on their staff. They’re being paid by the facility, but their role is to advocate for the patients under their care. Most states have a LTCO program you can reach out to.

• Private hire. You can hire your own patient advocate. The National Association of Healthcare Advocacy has a directory of professional patient advocates you can search to find suitable candidates in your area. If you do hire your own, it might be worth submitting a claim to your insurance—your worst-case scenario is just a denial, after all.

• Nonprofits. There are nonprofit patient advocacy organizations like the Patient Advocate Foundation that offer free or heavily discounted advocacy services.

Old age brings a lot of challenges—and caring for someone as they age can be just as challenging. If someone you love is headed for an assisted living or nursing home situation, consider hiring a patient advocate to help you make sense of it all.