Empowering Patients with Disabilities

“Around people with disabilities, our natural reaction is to say, ‘let me help you… let me do that for you,’” explains Dr. Richard Gibney, who served patients with a variety of disabilities for over 40 years as a nephrologist. “That desire to help is certainly a good thing,” he continues, “but what happens when you don’t give them a chance to do anything for themselves?”

“The patient with the problem should be part of their own solution.”
Dr. Richard Gibney, Nephrologist

Something powerful happens when patients are empowered to take control of their own healthcare, and people with disabilities are no exception. They too deserve the dignity of being able to help themselves. Empowerment is for everybody.

Stories from the clinic

Last month, we shared stories about empowering “noncompliant” patients, and now we are continuing that theme with more inspiring stories from the clinic.

Each of these true stories tell how dedicated staff members took the time and energy to care for underserved patients — with incredible results. Of course, these relationships go both ways, and ultimately the patients, staff, and entire clinic were blessed by a culture of care and collaboration.

Each situation is unique, and that means the same process won’t work for everyone. With a little time and creative thinking, you might just be surprised at just how much patients with disabilities can do!

A woman with mental disabilities gains sense of accomplishment

We had one woman with a mental disability; she looked around and saw the stars pinned on other patients’ machines. These indicated that they were empowered and involved in their own care. This woman wanted an empowered star too. She deeply wanted that sense of control and accomplishment for herself!

So, the staff adjusted to her disability to find out what she could do … and she became simply perfect at pulling her own needles after treatments. Like most empowered patients, she never spilled one drop of blood because she knew her own body. She couldn’t do everything, but she could do something! She had the coaching and training and was proud of herself. It gave her a sense of control.

Just because you have a mental disability, doesn’t mean you can’t have some sense of accomplishment. These people have the same emotions as everybody else, and people like to know that they’re doing something right.

– Dr. Richard Gibney, Nephrologist

An elderly woman refuses to let arthritis hold her back

We had an elderly woman whose hands were so gnarled from arthritic hand issues, I don’t know how she survived without pain pills every day. She saw all these other patients building their machines, and she said, “teach me too.”

Well, we had to adjust our process, but she was able to learn how to remove her needles. When you hold your site, a lot of people use one forefinger, but with her, we put a piece of tape on it and showed her how to hold her arm differently and use her thumb in more of a clamp method.

Simply by being able do that, she had incredible pride in herself! She was able to do something.

– Connie White, RN, Staff Nurse

A recent amputee finds purpose in a new friendship

One time I was meeting with patients in the clinic, and there was a Hispanic lady who started crying. I asked to hear her story, and she shared that she had to have her leg amputated six months ago… She was devastated and wasn’t sure she wanted to keep living a life with her new disability. But after she thought about it for a while, she said “there must be some purpose to this, I guess that’s why God still has me alive.”

Now this was a Hispanic woman who was bilingual, and it just so happened that on the other side of the unit, there was another Hispanic woman who only spoke Spanish, and she was crying too. I asked the nurses about her, and they said that the patient had just started dialysis and didn’t know anybody. She didn’t speak English, and she was just overwhelmed.

And so I said, “why don’t you move them together so they can become friends?” The woman with the amputation had already started learning how to build her dialysis machine, so she knew a lot of things. She could help the whole situation not be so scary… When you first come into a dialysis clinic, you don’t know anything, you don’t know what’s going on, and all the alarms are going off. It’s all scary.

So a few months later I came back and it was like night and day. The lady with the amputation is happy because she’s helping and nurturing somebody, the Spanish-speaking lady feels ecstatic because she has control, and she can even help do some of the things her new friend can’t do. They were just having a great time together, all because we had given them a chance to recognize their abilities — their humanity.

– Dr. Richard Gibney, Nephrologist

A stroke victim with an empowered mind

One lady had a stroke and really wanted to be empowered, but there wasn’t’ much she could do. She was smart though, and we taught her to understand her numbers and monitors. She knew her dry weight and how much needed to come off… she could do that and a few other things, and that was enough. She felt so empowered to do that.

– Taunja Arvelo, RN, BSN, Hope and Caring Clinic Facility Manager

Expanded lessons learned

The lessons learned from these stories go far beyond patients with disabilities. In today’s healthcare culture, we are all taught to do many things for the patients that they could actually be doing for themselves.

“Anyone will be more willing to try new things for people they trust,” he says, explaining that you can’t have progress without a relationship and trust first.

“Yes, you can do it faster, quicker, better, but if you don’t slow down to get to know the person, to hear their stories… the patient becomes like the Toyota truck moving down the assembly line.”
Dr. Richard Gibney, Nephrologist

Patience is also a key part of working with disabled people. “It is better to set small, attainable goals so that they can feel a sense of accomplishment for heading in the right direction,” shares Taunja, “No matter what, even when goals are not met, these patients need to feel loved or the process will not work.”

Permission to innovate

Another crucial part of empowering patients with disabilities (or otherwise), is giving the staff permission to innovate. Each patient is unique, and each situation is different. That means the same assembly line approach won’t work for everyone. Doctors, nurses, and staff need encouragement to think outside the box, especially when accommodating for disabilities.

“When you put rules and regulations on people, and you slap their hand when they reach out to do something different, it shuts their creative thinking process down,” explains Connie. “Something that works for one patient, might not work for the person sitting next to them. You have to be able to try new things.”

In three different units, this problem-solving attitude went so far as to help blind patients learn to self-dialyze. Dedicated staff members began by blindfolding themselves to help understand the sensory shift. They also sent the patients home with various parts to familiarize themselves. Together, they learned some helpful tricks, sometimes relying on auditory cues like counting clicks to make sure everything was set up correctly. Several of these blind patients became fully empowered, able to perform their entire treatment on their own.

Empowering Patients with Disabilities

Stories from the clinic

A woman with mental disabilities gains sense of accomplishment

An elderly woman refuses to let arthritis hold her back

A recent amputee finds purpose in a new friendship

A stroke victim with an empowered mind

Expanded lessons learned

Permission to innovate

We’re here to help

Empowered Kidney Care

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