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Join us for a conversation with Franke James, an activist, artist, and author, as we delve into her book, Freeing Teresa: A True Story about My Sister and Me. Together, we explore the story of Teresa, Franke’s sister, and the challenges they faced navigating the complex systems surrounding developmental disabilities. From Teresa’s unjust assessment to her fight for autonomy, Franke shares insights into their journey of advocacy and resilience.

Franke James is an activist, artist, and author.

We discuss her book, Freeing Teresa: A True Story about My Sister and Me.

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Transcript

Kevin Pho: Hi, and welcome to the show. Subscribe at KevinMD.com/podcast, and get CME for this episode by clicking on the CME link in the show notes. Today we welcome Franke James. She’s an activist, artist, and the author of the book Freeing Teresa: A True Story about My Sister and Me. Franke, welcome to the show.

Franke James: Thank you very much for having me on.

Kevin Pho: So let’s start by briefly sharing your story and journey.

Franke James: So this story starts in 2013, when my younger sister Teresa, who has Down syndrome, was 49. And she was at a crossroads, because my father was old, like 91, and my other siblings wanted to ensure that she had a safe place to live. Which all sounds good, however their idea was to put Teresa into a nursing home.

And I didn’t agree with that, and tried to come up with all sorts of different options, different ways of having Teresa live in the community, but nothing worked, unfortunately. And I even offered to have Teresa live with me.

But I got an email one day that told me that Teresa had been taken out for a nice breakfast and put into a nursing home. And I was so upset. And my father, who didn’t know anything about what was going on, and was Teresa’s primary caregiver, was totally shocked.

And so I spoke to him, and over about four days we came up with a plan to go down and visit Teresa, with the idea that he might be able to sign her out. But we didn’t know for sure. There was a lot of information that was being withheld from us as to Teresa’s health and how she had been signed in. One of the fascinating things that was withheld from us was the capacity assessment, which will be very interesting to your medical audience.

Kevin Pho: So tell us about the process that brought Teresa to the nursing home. And you just mentioned it was a shock to you and your father, so tell us what exactly happened there.

Franke James: So it was only afterwards, when I got the health records, that I was able to see how they had done the capacity test. And it was done at one of my sister’s houses, and it was done without my father’s knowledge. And the agency involved in testing Teresa figured that this would spare dad the grief and the upset of having Teresa assessed. But unfortunately it took him totally out of the loop, and it gave no agency to Teresa.

And so the social worker who did the capacity assessment started to ask Teresa questions, and one of the first questions was whether or not she agreed to be tested. And Teresa had no idea what she was being tested for. She didn’t know what a nursing home was, she had no experience with it. And so she didn’t agree to the test. However, the social worker proceeded with the capacity test because she didn’t say no. And so that’s an important thing for everyone to know, that you explicitly have to say no to being tested.

Kevin Pho: So how did the agency, how did a social worker get involved in Teresa’s case in the first place?

Franke James: Well, my siblings wanted to find a safe place for Teresa to live, and all of the group homes were full. And so one of my sisters, who has experience with nursing homes, thought that a nursing home would be a good place for Teresa, at least not terrible. And everyone other than me agreed with this decision, and Teresa herself was never asked.

So this is so frustrating, because there’s an adage in the disability world, nothing about us without us. And unfortunately Teresa was excluded from planning her own future. She had no desire to move into a nursing home, and wanted to stay at the condo, or to live with me.

Kevin Pho: So when the decision was made to move her to a nursing home, how did she respond?

Franke James: She wasn’t told in advance. As far as I know she wasn’t told, she had no understanding of what was happening to her.

And the other thing, to go back to the capacity test, the social worker asked Teresa what her activities of daily living were. And when she said that she was able to shower herself and dress herself and go to the bathroom by herself, the social worker took that as a sign of her dramatic cognitive decline. And the reason, even though Teresa was telling the truth about herself, was that she had been told by other people that she couldn’t do these things and needed 24/7 care in a nursing home.

Kevin Pho: So when you obviously heard about this news, what was your response, and what did you do next?

Franke James: Well, there wasn’t too much news that was being shared with me. I was told that Teresa was incompetent, which is not actually the right technical term, it would be incapable of making the decision about whether to move into a nursing home.

But at any rate, when I heard that Teresa was in the nursing home, I wanted to get her out. I went down and visited her with my husband, and we saw that she would be living with people who were sick, who were dying. It was just no growth for her, it was cutting her off entirely.

And so I came back and spoke with my father, and he said that he wanted to get Teresa out. And we spoke with lawyers and we said, what can we do? So we went down to the nursing home, and my father, who was a former lawyer, asked to see the admission papers. And when he saw them and saw the power of attorney, he realized that he was still listed as the senior power of attorney, so that he was able to sign Teresa out.

However, the nursing home was very reluctant to sign Teresa out, and they said that she would be signed out against medical advice. So my father signed the papers saying she was being signed out against medical advice, and that was it. And then we took Teresa home, and Teresa moved in with me, which is great.

However, there was a lot of pushback from my family who didn’t agree with Teresa living with me, because in Canada it would be free for Teresa to have lived in a nursing home. So it was free room and board for her life.

Kevin Pho: And for some context, when did these events happen? How many years ago did these events happen?

Franke James: So this all happened 10 years ago, that Teresa was declared incapable and put into the nursing home. And we got Teresa out within four days, which is great. And you think, well, nothing much came of that, that’s great, she got out after four days. However, it totally tore our family apart, and so unfortunately it had devastating consequences.

And Teresa herself has blossomed. Far from being incapable, she’s totally exceptional, and has proved herself over and over again. She’s published two books, she’s been named a champion for change by the B.C. human rights commissioner, and she’s won awards. She also got an apology from the Ontario government, which was wonderful. Now, it took a lot of campaigning and a lot of advocacy, but Teresa got an apology two years after the event.

Kevin Pho: You wrote about this story in your book Freeing Teresa: A True Story about My Sister and Me. Tell us about some of the main messages that you want readers to come away with after reading your book.

Franke James: So some of the main messages would be, nothing about us without us. That’s very, very important. We should never have been doing any planning for Teresa without her involvement, and she was treated not fairly, I would say.

And the other message is that doctors and social workers have tremendous power. They can decide that someone is incapable through the tick of a box, and they’re not given very much time to make that decision. So it’s so crucial that when they’re faced with that decision, they should remember Teresa’s case, that she was declared incapable in 2013, wrongly declared incapable, and she has excelled living in the community these past 10 years.

Kevin Pho: Now, for those who find themselves in Teresa and your family’s situation back in 2013, and there is an assessment for capacity, what kind of advice do you have for families and patients in that situation?

Franke James: Well, I think that some of it was due to caregiver burnout. And that’s not really fair. It’s like, I’m going to lock someone up because I can no longer take care of them. That’s not fair to the person who’s getting locked up.

And so there are different agencies that can help people with disabilities live in the community, and every avenue should be explored for that. In the US there’s the Olmstead act, which has been really pivotal in the disability world, because it gives people, it’s a Supreme Court decision, I think it was ’99 or 2000, that said that people with disabilities have the right to live in the community and should be helped to live in the community and not be segregated.

Kevin Pho: Now that Teresa is obviously blossoming, as you said, and received the apology from the Ontario government, have you talked to your siblings who initially wanted to put her in a nursing home? And have they seen her thrive, and have they reconsidered their perspective?

Franke James: Well, I would say that reconciliation is always possible, but unfortunately we’ve been shunned for the last 10 years. And they have not acknowledged Teresa’s success or apologized in any way.

Kevin Pho: So when you talk to Teresa, what does she think about all of these events surrounding her?

Franke James: That’s a good question. So Teresa really loves living with us, and she’s enjoying her life here. And when I ask her about the nursing home, she says that was wrong.

And we have a little video that we put on a change.org petition in 2014, to ask for an apology from the government. And Teresa looks so cute, she’s just unbelievable, people just have to watch it. She’s just gorgeous, she’s so alive and healthy and beautiful, and really speaking up for herself.

Kevin Pho: So how often do you think this happens, in terms of this situation of placing people who are relatively young with developmental disabilities in nursing homes? I’m sure that you’ve heard similar stories in your advocacy journey. So tell us about the context, and how often does this happen in Canada?

Franke James: OK, so this is a great question, because when it first happened I thought that Teresa was alone. I thought this was a very rare example, that she’d been put in a nursing home. But over the years I realized, with more research, that it happens all the time.

And there’s an epidemic worldwide of young people with developmental disabilities being put in long-term care. In New Jersey there’s a recent article about 2,000 people. And it’s happening in Florida, there was a judge saying, stop funneling kids into nursing homes. It’s really happening worldwide.

And Teresa and I are going to be presenting on a panel at a disability conference in May about this issue, and we’re going to be talking with experts who can sort of describe the scope of the problem and the causes, why it’s happening.

To me it’s a lot like, in the 1950s and 60s it was more accepted to institutionalize people with developmental disabilities, but then there was the deinstitutionalization movement, and it seemed that we were turning a corner, that people were understanding that it was wrong to put people with developmental disabilities in institutions. But now it is happening more and more, and we really have to watch out for it.

We have to put ourselves in that person’s shoes and ask ourselves, would we want to be in a nursing home at 49? There was no medical need for Teresa to be there, and there was no training by the staff for her to be there.

Kevin Pho: And just to explicitly state, what are some of the long-term implications of placing young people in nursing homes? Is there no chance of success, is there no chance of thriving in that situation?

Franke James: I suppose it would depend on the nursing home, but I think an awful lot of nursing homes, if the person is not compliant, will drug the person right away. And Teresa often needs persuasion, but she doesn’t need drugs. So I would have seen a future of her being drugged and really going downhill.

Kevin Pho: And in Canada, any policy changes or any laws that you are advocating for to prevent situations like this going forward?

Franke James: The thing is that the laws are there, but they’re not respected. There’s the human rights law, the UN CRPD, there’s the Charter of Rights and Freedoms. There are lots of laws, but it seems to me that the authorities are turning a blind eye to the rights of people with disabilities.

Kevin Pho: And can you speculate as to why do you think that is?

Franke James: I think that there is sympathy for the person who is the caregiver, and that if they are burned out and not able to take on the burden, the person with a disability is perceived as being a burden. And therefore it enables the system to put the person into long-term care for their own well-being.

However, I don’t think that that’s very respectful of the rights of the person to live a free and full life, and they should be supported to live in the community. Teresa has really blossomed, and she’s blossomed because she really needs something more than just a roof over her head and food in her belly. She needed love, she needed to be part of a family. And I think that that’s what we’ve given her over the last 10 years.

Kevin Pho: We’re talking to Franke James. She’s an activist, artist, and author of the book Freeing Teresa: A True Story about My Sister and Me. Franke, we’ll end with some of your take-home messages that you want to leave with the KevinMD audience.

Franke James: So a take-home message to all of the doctors and practitioners out there is, remember Teresa’s story. She did not need to be in a nursing home, she was not incapable. Remember that story, and really use your power very carefully to declare someone incapable.

A terrible wrong happened with Teresa, and fortunately we were able to rescue her, but not everyone is so lucky. And it comes down to each of us to step forward and protect the vulnerable person and ensure that they have a full life in the community.

Kevin Pho: Franke, thank you so much for sharing your story, perspective, and insight, and thanks again for coming on the show.

Franke James: Thank you very much.