Penny Shaw, Resident and Advocate

Penny Shaw has lived in a nursing home in Massachusetts for nearly two decades and is a renowned advocate for residents in long-term care. Penny is a policy advisor to CMS and was part of the White House’s Coronavirus Commission for Safety and Quality in Nursing Homes. Click the black squares below to hear and read about Penny’s experience during the COVID-19 pandemic. The expanded interview (edited for clarity) is available at the bottom of the page.

Ah no nobody gave me any trouble; they don’t touch me. I mean, I’m too powerful. I had no problems. They even told me they had six administrators, six directors of nursing in a year and people even said people are afraid to work with me because I supervise everyone. I had problems today – I had to go to the board of registered nurses, director of nursing today. But I’m just telling you now, if they don’t do their job I make sure the state knows about it. Even the administrators – they don’t touch me. I’m too powerful. I didn’t know I was that powerful, but they’ve made it clear to me I am.

I have a rare disease called Guillain-Barré. Guillain-Barré Syndrome. I’m living in a nursing home in Massachusetts. Currently named, it’s had different owners, but at the moment its name is Braintree, like the town, Manor, M-a-n-o-r, Healthcare and I’m in my 19th year here. Braintree Manor, M-a-n-o-r, Healthcare, one word.

So most of my activities are around writing at night. I do a lot of writing. I’m giving a lecture in June… I do so much writing and speaking and publishing that that’s all I can even fit into my schedule. But it’s a lot of fun, I like it, don’t get me wrong.

Columbia School of Journalism interviewed me last week. You just never know till you open your email box what’s going on. I’m a policy advisor to CMS you know, it’s very varied so it’s not like I get bored. 

And for residents themselves, you know we want… should something like a similar pandemic where it extends… I mean you want to make sure they have access to information, their rights, technology so they can zoom their family members and talk if they can’t get out of the building or people can’t come in. But the system needs to be changed. We need more people, more funding, change in the priority, more funding for long-term care services in the community. Paying family members, paying ya know, getting people out of poverty who are disabled… Getting Medicaid to pay for more home living in the community, independent living. I mean we need a whole shift in the system. That’s a complicated question.

Click below for the expanded interview (14:55).