Joni Eareckson Tada and Gracie Rosenberger discuss Senate Bill 693

If I never had a problem I would not know Jesus could solve them.

I would never know what faith in God could do. And I swam through it all, through it all. I learned to trust in Jesus. This is Johnny Erikson Todd singing with my wife, Gracie. They're both on the phone right now. Good afternoon, ladies. Good afternoon, Peter, and thanks for having me on the show. Well, it's a pleasure to have both of you. I'm going to start here, Johnny, with you. We're going to get right to it because I know you're planning for a big conference right now and I really appreciate you calling in this afternoon. Gracie, you hang on for just a sec. I could talk to you anytime, Gracie. No, I'm just kidding.

I love both of you. Johnny, you're one of my favorite people in the whole wide world and you, this is an issue that you are having some very serious conversations with. Nationally, we want to talk about Senate Bill 693. I'm just going to jump right into it.

Talk about it. What is it and why is this important? Well, virtually every disability advocate in my network, as well as those involved in elder abuse, are deeply concerned about, again, Senate Bill number 693. I want our listeners to write that down. Senate Bill 693. Now, basically, this bill will do two things. It will pour a massive amount of taxpayer dollars into federal hospice programs, including Medicare hospice programs. Plus, secondly, there will be new and much more liberal hospice education for those programs, more relaxed regulations, as it were. Now, the reason I am against and disability advocates are against and senior advocates are against this bill is because existing federal hospice programs, we all know, are plagued by tremendous fraud, poor quality care, rampant abuse and many say murder, and a gross waste of taxpayer dollars.

Under Medicare hospice programs, records show that staff administer high doses of unneeded medication so that their medical records contain documentation that justifies billing Medicare for these expensive drugs at higher billing rates. So, I'm encouraging people to vote no on Senate Bill number 693 and because, again, a massive amount of federal funding is going to be poured into a federal hospice program that is fraught with abuse of patients who are not even terminally ill. When I talk about new regulations and a more liberal education in this bill, the new language in this bill does not require hospice patients to be terminally ill to receive lethal drug dosage. So, things of this sort are of great concern to me and every disability advocate, every senior advocate, and the hospice bill has now moved into a new committee in the Senate, the Committee on Health, Education, Labor and Pensions, and to us, a no vote means no to elder abuse. It means no to unnecessary suffering and death.

It means no to fraud and waste and especially abuse. So, I'm hoping that my friends, all of our friends who are tuned in today, will call their senators, write their senators, email their senators. If you don't know who your senator is in Congress, then just Google your address and ask for your representative before Congress and you'll get all that information. Just tell your senator that you want them to vote no on Senate Bill number 693. Let's not expand funding for federal hospice programs until existing problems are resolved. Congress just can't. They must not throw good money after bad. So, basically, Peter, that's my campaign speech because I know you have many, many, many listeners who care about these issues. I'm listening to your comment saying, let's get Congress not to throw good money after bad and I'm thinking, Johnny, you know, that's Congress by definition. That's what they do.

They throw good money after bad. But I think this is an incredibly important topic. You've written about this a lot.

I've written about some, not on this particular bill, but I've written on some of these things, but you've written quite a bit on this. What's a good place for people to go if they want to see some of the things that you've put down in writing about it, articles you've done, blog posts, so forth? Is it just out at your website?

Well, my website, yes, of course, johnnyandfriends.org. But I wrote a book earlier this year called When Is It Right to Die? And that's a question that we all wonder about when we deal with significant disability, when we deal with life-altering injuries or illnesses, when we're taking care of an elderly parent who is suffering from dementia, we want to know, when is it right to die? How do I find that clear distinction between promoting treatment, which will extend my loved one's life significantly, and that's a good thing to encourage life, or when am I promoting treatment that will do nothing more than prolong the process of dying?

We all want to find that clear line, that clear distinction, we want wisdom, we want guidance as to how to know when a person is actually dying, and when should they receive treatment that will indeed help their life, to which they should be helped. So this book, I think, is Practical Guidelines, Peter. And I thank you so much for giving it a solid thumbs up, as you have in the past. And people can find out about this book by just visiting amazon.com or christianbooks.com, or they can visit johnnyandfriends.org. I know Gracie, your wife, she's such a good friend of mine, has got some strong opinions about this as well. Well, Gracie has strong opinions about everything. Gracie has strong opinions about everything, Johnny. Gracie, one of the things I wanted to ask both of you all, Gracie, I want you to go first, then Johnny, follow up with this, but when I first saw this bill, and it calls for a lot of education about hospice and palliative care and so forth, my first question was, what kind of education?

Who's writing the curriculum? And I wondered if there were individuals that would speak to somebody that finds themselves, so both of you all, both of you two were hurt when you were 17 years old. And you know, you have had life-altering, massive disability issues. And I don't know many people that want to live like either one of you, quite truthfully. What you guys, what you two ladies live with is extraordinary. Gracie's 80-plus surgeries that I can count, both legs gone, intractable pain. Johnny, quadriplegia, breast cancer, intractable pain, these are very difficult things to live with.

One of the things I saw was people be counseling folks like you all on the productivity of life in spite of these things. Gracie, how does that feel to you, what resonates with you on this? Well, for me, you know, Johnny and I experienced similar feelings. I mean, when we had, when we were in the midst of the throes of the trauma that we experienced when we were 17 in the hospital for so long, and all of the things coming at us and how destructive it affected our lives at the time.

I mean, you know, that's, I mean, destruction comes to mind. You know, I did the same thing that Johnny did, including throw her book across the room when someone brought it to me, and she knows that I've told her that and I love her dearly, and she's forgiven me for that. I trust, but I wanted to die. I mean, I asked several of my friends, look, I can't move everything, neck, back, my legs are in traction. Just give me something, give me a razor blade, I don't care what it is, just, I can't live like this. I can't live what they're telling me, that I'm not going to walk, I'm never going to run again, I'm never going to have kids, you know, I didn't want to live.

So I want to know, is this curriculum they're saying and training, education and training, which is in the title of the bill, is that going to be things like Johnny's organization provides, things that say, hey, there's a community that can come beside you. There are people, there are people in churches, there are people in support groups that can say, life is worth living, my life has purpose, no matter what that looks like, if it's from a wheelchair, which mine is right now, and Johnny's been now for over 50 years, you know, that's where I'm coming from with it. Are you going to provide them hope? Are you just going to provide them drugs to slowly, stealthily, euthanize them? That's my deal. Well, Gracie, I could not say it more eloquently than you just did, because I think your problem and my problem when we were despairing of life was not our injuries, which were life threatening, but our problem was depression and discouragement. And you hit on the word perfectly, the word hope.

And I want our listening friends to know this. You were talking about curriculum and education. The new language in this bill does not require hospice patients to be terminally ill, to receive life-ending drugs, lethal doses of medication. And that is entirely new for our country. All of the rest of the position-assisted side bills across the United States require a person to be terminally ill. But here, in this Senate Bill number 693, you don't have to be terminally ill to receive a lethal dose of medication. You can just be disabled. You can just be too old.

You could be too depressed. And this is what alarms those of us who work against elder abuse and disability advocacy. We want to clear up that language.

We want to make certain this bill does not pass. Let's get rid of the fraud and waste and abuse in the Medicare system and in the federal hospice program before we pour, as Peter put it, good money after bad. Well, I think both of you said this well. John, I want to ask you, I don't know that I've ever asked you this question, but did you get to the point, like Gracie just said, where you were despairing of your own life, that you just said, I just want to check out?

Oh, my goodness, Peter, yes, of course. When I was first injured, and even when I started to begin suffering with chronic pain, you know, because when you deal with stage cancer, when you deal with quadriplegia every day, and then you've got to face chronic pain every day that is never ending and unrelenting, you want to give up. You want to throw in the towel. You want to say, that's it.

I can't do this anymore. But that is where the word… Well, I know your faith is so, it just so anchors you, but when this all happened to you, your faith wasn't, you know, you weren't Joni Eareckson Tada back then. You were just a 17-year-old girl who was incredibly scared and so forth, and people came along and spoke words of life to you in that. Do I have that right?

Absolutely. I would beg my girlfriends to bring in their mother's sleeping pills. Please bring in your father's razors.

We can do this secretly. No one will ever know that you helped me end my life. Because remember, I'm a quadriplegic. I can't handle these things.

I need help to end my life. And yet these wonderful people, God bless them, refused to listen to my despairing requests. But they spoke words of hope into my life, and they said to me, Joni, you may not be able to do quadriplegia. You may not even be able to do chronic pain, but you can do all things through Jesus Christ who can strengthen you. Will you but turn to Him? Will you but trust Him in this and enable Him to allow you to persevere and endure?

And Peter, I'm just so glad I'm living. Oh my goodness, I just turned 69 years old, 51 years in this wheelchair, and I celebrate life. I know the future's not going to be easy. I know as I age the encroachments of pain and disability will worsen. But I've got to trust my God with the future. Besides, we already have good laws on the books here in the United States which allow people like me to die with dignity, without a drug abuse of sorts or anything that is anti-life. We already have good laws which enable people like me to plan our future and how we want to be treated and what we might like to have for treatment and what we might not like to have for treatment.

We can make choices. So let's not despair of the future. As Gracie said a moment ago, let's have hope. Well, those are beautiful words, and I think that's the message that we all would like to hear is available to anybody.

Seventeen-year-old girls who had a spinal cord accident or a car wreck like yours, Gracie, or people 89 years old facing Parkinson's or Alzheimer's or whatever, it doesn't matter. Those are the words of life, beautiful words, wonderful words, wonderful words of life, and I appreciate both of you. Johnny, I'm going to let Gracie have the last word, but I got to tell you, Johnny, I got to get you back to Nashville because we had to cancel, you got sick, and then the Billy Graham funeral and so forth, and we had a dinner for you, and you got to come back because they're all waiting at the table and the food's getting cold.

And so I'm ready for you to come to Nashville and have this dinner with us, and we'll look forward to that time. Gracie, last word on that, we only got about a minute, actually less than a minute, Gracie, 30 seconds. Just what Johnny said, just echo your heart. Oh, my goodness. I mean, we can do all things through Christ who strengthens us, and if it's taking one minute at a time, five minutes at a time, you know, one of the best things, and it's not real spiritual, but that I was told, you know, by my beloved... Ten seconds, Gracie. Okay, I know, is that, look, this is a blip on the radar screen of life, okay? So let's not get caught up in this right now, because there will be a respite. Now, whether that's just a little bit less pain so that you can make it through the next 30 minutes, or an hour, or the day, whatever that is, but there is hope.

Hey, this is Peter Rosenberger. Have you ever helped somebody walk for the first time? I've had that privilege many times through our organization, Standing With Hope, when my wife Gracie gave up both of her legs following this horrible wreck that she had as a teenager, and she tried to save them for years, and it just wouldn't work out, and finally she relinquished them, and thought, wow, this is it. I mean, I don't have any legs anymore.

What can God do with that? And then she had this vision for using prosthetic limbs as a means of sharing the gospel, to put legs on her fellow amputees, and that's what we've been doing now since 2005 with Standing With Hope. We work in the West African country of Ghana, and you can be a part of that through supplies, through supporting team members, through supporting the work that we're doing over there.

You can designate a limb. There's all kinds of ways that you can be a part of giving the gift that keeps on walking at standingwithhope.com. Would you take a moment and go out to standingwithhope.com and see how you can give?

They go walking and leaping and praising God. You can be a part of that at standingwithhope.com. Welcome back to the show for Caregivers About Caregivers hosted by a caregiver.

I am Peter Rosenberger bringing you three decades of experience to help you stay strong and healthy as you take care of somebody who is not, and we can do that because he does live. I wish I could play the whole song for you. I may have to do that one day. That is my wife, Gracie, and Johnny Erickson-Tada. You can get that on iTunes. You can go out to our website, standingwithhope.com, and listen to that.

It is spectacular. I'm going to put that interview with Johnny and with Gracie out on our podcast a little bit later on. Gracie, I'm going to let you have the last word here. You and Johnny just gave a great interview, and I'm going to put it out there. And we should remind about that Senate bill, too. Oh, yes. 693.

Bill 693. Now, I'll put all of this out there on the podcast. You'll be able to find it. You know, Gracie, I love what you said there, that you had those moments. And, you know, I didn't know you when you first got hurt. Right.

A lot of people think that, but no, we did not. Thank you for that clarification, darling. You know, I didn't know you when you got hurt. I didn't know those despair. I've seen you at other despairing moments.

I've caused other despairing moments. But during that initial time of that wreck when you're thinking you're 17 years old and you wake up and your whole body is broken. At one time, a resident once told us that you had 200 breaks from this car wreck.

I mean, it's just devastating car wreck. And there's no way you thought you could ever live like this. And so I heard when I hear those things of you being 17, 18 years old and you're begging friends for a razor blade or sleeping pills to be able to just check out. And look at the life that you've lived. You've lived to see your grandchildren. And people are walking in Africa because of you.

People are walking in Nigeria because of you. People are getting hope in this show because you lived. And you've understood that life is so important.

Last words. One of the songs, Friends Surrounded Johnny. And you know, friends surrounded me from Belmont University here in Nashville. They came every day faithfully. Those friends are the ones that started saying, hey, uh-uh.

No, we're not uh-uh. You don't get to think like that. And it didn't matter how mad I got. Oh, I was angry at God. I was angry at everybody.

But you know what? They were relentless. They were relentless in coming to see me.

They were relentless in not letting me check out. And one of Johnny's favorite songs is the Elton John song. This song's for you, I think is the title.

But no, it's not much. But my gift is my song. And this one's for you. And you can tell everybody this song's for you.

And he would get up underneath her striker frame so that she could see him with this guitar and play that to her. And you know, it's people. It's when the community and your friends.

They do. And Gracie, we're out of time, darling. And so this one's for you, darling. You know, let's speak life to each other. That's the whole point of this show today. Speak life to each other. We're going to put this out on the website, the podcast, caregiverpodcast.com. All of this is going to be out there. Standingwithhope.com. This is what we're about here. Thank you for being a part of this and we'll see you next week.