“It’s illegal to deny my father care because he uses a wheelchair,” I told the nurse firmly.

“We’re NOT denying him care. It’s just that we don't have a safe way to get him onto our treatment table,” the nurse protested.

“It’s your responsibility to have the equipment to make it safe. Clinics are required to provide equal care to patients with disabilities.” I pressed.

“Well, if you’d arrange medical transport for him, the EMTs could safely transfer him,” She suggested.

“Your solution would cost my father $15,000 out of pocket. Forcing high cost on patients with disabilities is also illegal.” I responded.

Patient Rights in Theory

My father is an inconvenient patient for medical offices.

He uses a wheelchair. As a result, his medical appointments sometimes require extra time and special equipment that many practices don’t bother to purchase.

If it was up to health care systems, they’d simply pass on treating patients with special needs.

That’s why the passage of the Americans with Disabilities Act (ADA) in 1990 was so essential. The act makes it illegal for medical practices to discriminate against patients with disabilities.

As an American, I’m proud that my country codified protection for this vulnerable group of people.

As a caregiver, I’ve found this law is marginally effective in protecting my aging loved ones’ rights.

We Are It

Laws only work if they are enforced. And there’s little accountability when it comes to health care organizations and ADA compliance.

That’s why a wise family caregiver always checks for clinic accessibility before signing up a loved one for medical treatment.

I know this. I did check.

Yes, the clinic staff person assured me. Absolutely. We can safely manage patients with any disability. Rest assured!

Two treatments in, the story changed. The staff did not have proper equipment or personnel to accommodate my father. Their solution: ambulance transport for six weeks of daily treatments. Very expensive and all private pay.

We considered finding a different clinic that was accessible. But that assumed such clinics even existed. And it would delay my father's much-needed palliative care.

So, I dug in my heels, determined to force the clinic to live up to its legal obligations.

My first step was to seek help from professional advocates who knew the right buttons to push regarding ADA violations.

But my efforts were futile.

Elder law firms wouldn’t even take a call about my patient rights case. Government agencies weren't reachable beyond online complaint forms that seem to disappear into a black hole. Local advocacy organizations didn't return calls.

I had to come to terms with a fact that many caregivers and people with disability already know.

There is no back-up. We ARE our loved ones’ one and only line of defense.

So, my family deployed the one power at our disposal: skunk power.

Operation Skunk Power

Skunks are not dangerous creatures. They’re small. They don’t fight or kill other animals.

They rely on one form of self-defense. They make themselves smell so bad, people will do anything to get away from them.

As caregivers, sometimes our skunk power is our only method of influence with members of the medical-industrial complex. We literally have to annoy them into cooperation.

We raise a stink by being relentless.

Phone calls. Emails. Personal visits to pester for assistance we need from the people running the show.

If the first people we contact won’t help, we work our way up the ladder. We just keep pushing until we convince the right person that helping us is their lesser pain-in-the-ass.

For example.

When my husband was in charge of his father’s care, he received a last-minute call from the assisted living nurse that his father needed a drug refill ASAP. For several days, my husband put a daily call in to the doctor for the refill.

Crickets.

So, my husband started calling the receptionist every half hour. He even apologized for bugging her. But he didn’t stop. Finally, at a quarter-past the close of business, the doctor prescribed the refill.

Helpful Tips

There is a craft to using your skunk power effectively.

You need to stand firm. But you also need to maintain your self-control. Remember, your first contact will likely be gatekeepers, who have a thankless job and minimal power. You don’t want to treat them unfairly or give them a reason to hang up on you. They may get you a step closer to a person who can solve your problem.

You should avoid threats unless you’re prepared to back them up. Most of all, you have to work within laws and contractual agreements, so organizations don’t have an excuse to end their service to your loved one.

For me, this is a tall order. Unfairness triggers my anger big time. But I’m getting better. Here are some things I learned about managing my emotional discomfort and not losing my temper.

Get comfortable with others’ discomfort. Caregivers tend to be nice people They detest confrontation. So, making other people irritated is hard for us to tolerate. When you feel self-conscious or second-guess yourself, always remember why you’re there. Your loved one needs your advocacy.

Honor your anger. Caregivers are also susceptible to being shamed for our assertiveness. Your opponents may accuse you of being “out of control” or “irrational.” Don’t fall for it. There’s no shame in fighting for a loved one’s right to health care. Anger is designed to activate our protective instincts.

Keep your powder dry. We can both honor our anger and keep it in check. Take a break when you're at a breaking point. Let another family member take the next skirmish. I also highly recommend the book The Language of Emotions by Karla McLaren for effective ways to channel emotions so you can stay calm while still feeling intense emotions. It’s a fundamental skunk power skill.

Hold your nose. Remember, your opponents also have skunk power. They’ll tell you that your loved one’s care isn’t part of their job. They’ll claim something’s “in the works.” They’ll cite organizational policy as though it’s a fact. They’ll send you to other people, offices, or organizations for help. They’ll blame their higher ups. They’ll blame you. They’ll try to run out the clock on your patience or your loved one’s life. Again, keep reminding yourself of your noble end goal.

Don’t believe your thoughts. Be on alert for discouraging thoughts and nip them in the bud. As soon as you catch yourself thinking “I’ve tried everything,” remind yourself “this thought is never true and never serves me.” Then, ask yourself, “I wonder what I can try next?” I guarantee, you'll come up with unlimited next steps to try if you just take a breath and give ideas time to surface.

Lean on your allies. We are surrounded by caregivers who are veterans of working with the health care system. We’re collectively a wealth of information. Ask advice in eldercare groups on Reddit or Facebook. Talk to your friends and neighbors. Many of their ideas won’t be applicable. Other ideas will be ones you’ve already tried. But you'll be surprised what others can teach you.

You Win Even When You Lose

My family eventually got my father the care he deserved. This time.

But things don't always turn out this well. Over my years of caregiving, I’ve had to walk away. Find a completely new solution that cost extra time or money. Or settle for outcomes that felt less than fair.

But I never regretted my advocacy efforts. I always learned new information that helped me fight smarter the next time.

I always expanded my social network of fellow caregivers who offer moral support and good advice.

Relentlessly advocating for our loved ones shows health care providers that we aren’pushovers. We teach them that we do not back down when our loved ones need us.

Most of all, our efforts remind our loved ones that they deserve equitable and compassionate treatment. While dealing with the health system is frustrating for us caregivers, it’s downright demoralizing for patients.

When we fight for their rights, we show them their lives matter.

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