California’s Voice Options Program

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CARLY PACHECO, HOST: From KVMR and in partnership with FREED, this is Disability Rap. Today, a look at California’s Voice Options Program.

ELIZABETH WOOD: We offer a free speech generating device to Californians who either cannot speak or maybe have difficulty with speaking.

MEGAN SAMPSON: And so the ability to provide a way for others to communicate has been truly a beautiful and touching experience, and everyone who’s been involved with this program has really had an opportunity to see that as well.

TIM BURKHART: I was born with a severe hearing loss. And I think that’s one of the things I really enjoy about this program, is that I’m able to participate in helping people communicate.

PACHECO: That’s all coming up right here on Disability Rap. Stay tuned!

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CARL SIGMOND, HOST: Welcome to Disability Rap. I’m Carl Sigmond with Carly Pacheco. Today on the show, we focus on resources here in California for people who are unable to speak or whose speech may be difficult to understand.

PACHECO: We’re joined by a roundtable of guests with deep knowledge in this area. Tim Burkhart, Elizabeth Wood and Megan Sampson are with us. They are with the Voice Options Program at the California Department of Rehabilitation. Through this program, eligible Californians who are unable to speak or who have difficulty speaking can receive a free speech-generating device. They can also test out various speech-generating apps in order to know which app is best for them. FREED is one of 24 Voice Options providers in the state.

And Annette Seabury is also with us. Annette is one of FREED’s Assistive Technology Specialists and coordinator of the Voice Options program at FREED. She is a Speech-Language Pathologist with a long history of working with assistive technology, particularly in schools.

SIGMOND: We welcome you all to Disability Rap. Great to have this round table here with us. I want to begin by asking Elizabeth: can you explain the Voice Options program for a national audience? How does it work? What is it, and what do people get from it?

WOOD: So, the Voice Options program, like you said, Carl… We offer a free speech generating device to Californians who either cannot speak or maybe have difficulty with speaking. And we do this by partnering with 24 different organizations across the state of California, including FREED.

And we provide these individuals – you know – through providers, a demonstration of a speech generating device with six different applications that we’re currently offering. And they are able to – you know – work with the device, get an idea of how to use the applications. And then they’re able to take that device home for a short term loan. And they are able to keep that for two to 14 days where they can test that application out in real world situations. They can order from restaurants. They can call friends and family, and – you know – go to school, whatever they may need to do with that. And we have been able to provide this program in partnership with the California Public Utilities Commission, also known as CPUC.

PACHECO: Awesome, and Annette, so you’re really working one-on-one with some of these individuals with speech disabilities. Could you talk a little bit about what that’s like, who you interact with, and any specific stories you’ve got?

ANNETTE SEABURY: I think I have the best part of the entire program because I actually get to go out and work with people one-on-one, like you said, and show them these iPads, full of these amazing apps, and let them pick and choose, and poke around, and learn, and tease out what’s going to work best for them. So I do think that I have the best job in the world as far as doing this program with Voice Options and DOR.

So I get the phone call or a referral from somebody who is struggling or a loved one or a family member, somebody who might know an individual. I’ve worked with stroke victims, aphasia folk, lots of kids in different autism programs. And school districts have been referred over to me. And I have a long history of special education and speech pathology, so for me, it’s a perfect fit.

So I think my latest, most favorite story is a little boy in the school that I was referred to. And he wasn’t… He hasn’t spoken… He hasn’t spoken for four years, and he’s four and a half years old. And as soon as I walked in and sat down with him, and his mom and dad, and the speech pathologist from the school district, and the counselor, and we had an IEP team, and then an informal meeting. And as soon as I pulled out the device, and that little dude picked it up and just knew. It was brilliant. It was the most fantastic thing to see a little kid pick up this device. And I was showing him different apps. And he – sort of – pushed my hand off, like: “Leave me alone, lady. I got this.” It was fabulous. So he just picked it up and went with it. And at the end of the meeting, parents were crying, because it was the first time their child had actually gotten his wants and needs out into the universe without pointing and grunting. And mom was just ecstatic, just like I said, in tears. It was fantastic. So yeah… I think… Yeah, it’s a great… It’s a great job.

SIGMOND: That is an incredible story, Annette. And if I may just jump in here to say how important communication is for a child’s development. I did not speak until I was four, but I was able to use sign language to communicate before I was able to speak with my mouth. And that really is so important for development.

But Tim, I want to bring you in here. I actually have two questions for you. One is about eligibility for the Voice Options program. Who is eligible in the state of California? And then the second question is: what are the impacts of the program you’re seeing across the state? But please begin with eligibility.

BURKHART: Thank you, Carl. I have to tag along on your comments that you just mentioned about child development. I, too, was unable to speak for the first few years of my life. So I can understand and relate to how important this program is as far as communication.

But I thought I’d answer your questions for now. The only eligibility requirements that we have for the program that you must be a resident of California and you must have a speech difficulty or speech impairment that’s authorized by a professional, such as a speech language pathologist, or a family doctor, or something of that nature. That’s the only thing that we require for the program. There is no age requirement. And there is no income requirement, which we are very excited to see, because that way, it provides a valuable instrument for people throughout California who otherwise could not afford to get such a valuable device.

For your second question: the impact and program. Elizabeth and I were just talking about this the other day. We feel that we’re barely scratching the need for this program across the state of California. We have a lot of people interested in the program, but there are so many people that we feel that haven’t been reached. And that was another reason why we decided to come on the show: to reach out to more people who otherwise would not have heard about this program.

SIGMOND: Thank you Tim, and Megan, I wonder if you want to add anything here about reach, but also about impact of the program on the people you do serve.

SAMPSON: We stood this program up in June of 2020 in the midst of a pandemic, and it was a bit chaotic, as this was originally supposed to be an in-person only program. Instead, we had to figure out a new service delivery. So now, this program is delivered in person, remotely, by mail. Some of our providers will literally drive hours to provide it to an individual who is in need (Annette).

But this program has been really wonderful. In partnership with CPUC, we have six applications that individuals can try out, and they range from really basic picture based applications to really complex – you know – type out exactly what it is that you want or pre-program your responses. And they are extremely customizable for each individual, which is fantastic, because as we said before, communication is extremely important. And that’s something that Tim, Elizabeth, and I have each personally experienced.

For myself, having a traumatic brain injury, I have had my ability to communicate taken from me and had to go through a lot of speech language pathology – years of it, of appointments and going through my own relearning of how to communicate, including teaching my children baby ASL, so that I could communicate with them as they were children, so that we had a common language shared.

And so, the ability to provide a way for others to communicate has been truly a beautiful and touching experience, and everyone who’s been involved with this program has really had an opportunity to see that as well. We have seen that this program really has been incredible across, ages across disability types. Our youngest consumer has been, what, 18 months old. We’ve had consumers in their 80s. We’ve broken it out to have a specific program just for those who are in palliative care or who are in hospice so that they can have time with their family without having to go through the whole program. We’re building it out so that we can have a program for when disaster strikes so individuals have the ability to communicate in times of chaos.

Because we have seen – each of us personally but also through this program – how important it is that one has the ability to communicate for themselves, whether it be just the ability to say, “I love you mom,” or the ability to have a more complex conversation that allows somebody to really have experiences and start a life they never thought was possible before. And those are stories that we’ve heard from families, time and time again. And we have been so fortunate to be a part of this program. We’ve seen it grow from 11 providers in the first year and about 200 consumers, and now we’re at 24 providers and 770 consumers served. And we are just so thankful and grateful to be able to provide the opportunity, to give any Californian, regardless of age, disability type, income, anything – anyone who has difficulty speaking or who cannot speak who lives in California – this opportunity to communicate in a way that is comfortable to them. And we’re grateful to be able to experience it with them.

SIGMOND: It is such a great program, and we are so grateful to be one of your providers here at FREED. Elizabeth, for people who’ve never heard of the program, never seen one of these iPad apps, can you give us a bit more detail how they work? These are apps, loaded on iPads, correct?

WOOD: Yes, it’s an iPad, and we’re able to upload an application to that iPad. And we have six different ones that we work with and they have kind of a variety of complexity. And we really help find consumers the application that best fits their needs, you know based on physical capabilities and where they’re at. And in addition to that we also provide any additional equipment for that iPad that helps consumers utilize all the functions. For example, if they need a wheelchair mount, or a keyboard, or a stylus for utilizing the application on the iPad, then that’s something that we provide free of cost to the consumer.

That kind of allows it to be more accessible for people, and they are also offered training for the providers in case they need more assistance utilizing that application. Some of them are kind of more picture based, so you’ll have a grid on the iPad and there’ll be an image on there so individuals can kind of press the image that corresponds to a word or a phrase. And there’s more kind of text to speech ones where you would just type in the words that you want to say and then the application will read it out. So they do have a bit of difference in how they work, but all in all they all offer a voice for those individuals.

PACHECO: Thanks everybody and you know, in my former life prior to working for FREED I was as a special education teacher and had lots of students who used speech generating devices, a variety of speech generating devices. And one thing that strikes me about this program is that it really does change the game and access to the technology, and I wonder if you guys might share with us a little bit about the background, and sort of how this changes how people can access a voice that they didn’t have before. And maybe who didn’t really have access to a voice at all before that has been able to get one through this program.

SAMPSON: Speech generating devices are provided through a myriad of different ways. You have really expensive speech generating devices that can be provided through the Department of Rehabilitation through your plan. You have them through CPUC, but they’re the very expensive ones that are very hard to get. You can buy them. You can get them through your insurance, maybe if you’re lucky. You can buy them out of pocket, you can get loans for them.

But this is a speech generating application on an iPad, and it’s being given to individuals, whoever needs one. And while it’s not as robust as a full device that might cost a thousand dollars or more, it’s something that’s portable, and it’s something that is usable, and it’s something that is readily available for anybody. And it’s providing the ability to communicate, and it’s also providing access to technology that wasn’t there before.

And it’s filling the digital divide. It’s filling this accessibility need. And it’s filling this long wait in this vast… this vast feeling of – I don’t want to say hopelessness – but almost a feeling of hopelessness when it comes to speech generating devices. That has been there for so long because it’s difficult to get a speech generating device. And if you can’t have one of those then you have to find the ability to obtain a device that has internet, or a device that has some kind of AT. And then you have to buy the application itself, which can be a few hundred dollars just for an application.

And so, it can be such a roadblock for so many people, because these are expenses that when you are living paycheck to paycheck, or when you don’t have these additional thousand dollars just on hand to go and buy an iPad, and another couple hundred dollars to go and buy an application, saving up for that can seem so insurmountable. It can feel so overwhelming. And so, to be able just to provide what seems so basic – an iPad and an application – it can take away what feels impossible. I know for me at least, how impossible that can feel sometimes, something that is a basic human right – the ability to communicate – and how it should just be just provided to people.

SIGMOND: Thank you, Megan. It is such a powerful thing to be able to communicate. Tim, as we begin to wrap up, I’m wondering if you would like to share a bit more about your own story and your own journey with communication.

BURKHART: I was born in the late 60s during the Rubella epidemic, so I was born with a severe hearing loss. And at that time sign language is not really encouraged in the public school, so my mother had to figure out a way to get me to be able to communicate with other people. So, I had very extensive speech therapy, which is fine, but speech therapy and speaking is not for everybody. And it’s not for all deaf people. It’s not a one size fits all solution. So, I didn’t have anything like the speech generating device when I was growing up to communicate with people. I had to be mainstreamed in regular school, which was a challenge. But I survived. I’m here.

And I think that’s one of the things I really enjoy about this program – that I’m able to participate in helping people communicate, people of all ages. And that’s really exciting, because I know what it’s like. I’ve been there. One of the things I would like to see our program venturing more into helping older people communicate. Older people have a tendency to be afraid of technology. And I would like to see that branched out with our program and say: Yeah, this technology can be great we just have to show you how to use it.

PACHECO: I really appreciate that note, Tim. I know at FREED, we’ve served a lot of older adults throughout the years with this program and its multiple iterations. And I can think of several people… And one person comes to mind who did have one of those really expensive, big, fancy, very heavy, like eight-thousand-dollar speech generating devices. He resided in a nursing home, and that device had really just become a very heavy paperweight that followed him around. And he really, you know, the complexity of it, and the lack of ongoing speech therapy that he didn’t qualify for, really made it so that it was just a box. And it didn’t have any other usability on it, so he couldn’t… He came to FREED’s offices to write emails to his family because it didn’t have the capability to do that. And it didn’t have the capability to connect to the internet. And so, through the Voice Options program, we were able to get a device for him that he could use, he could program, he had full sort of understanding of the workings of.

And you know, I remember the day he got the device at the nursing home, we delivered it, he had had the loaner for a while. And the first thing that our staff saw as they left the nursing home was he went straight up to a staff member and let them know he needed support to use the restroom. And how simple, but that’s critical to be able to – for your dignity – to be able to tell people what you need. And really without the Voice Options program he had this very expensive tool that was completely unusable.

So, as a final wrap-up for the show can you tell our listeners who might be listening from anywhere in the state, or even outside of the state. But for those in California, how they might get connected to a local provider if they have need for this program?

WOOD: Sure. We have two options: you can either send us an email at voice.options@dor.ca.gov, or you can visit our website at dor.ca.gov/home/voiceoptions and we have a document on there that you can find which provider lives or resides in your county and you can connect with them.

PACHECO: That was Elizabeth Wood from the Voice Options Program at the California Department of Rehabilitation. We also heard from DOR’s Tim Burkhart and Megan Sampson, as well as FREED’s very own Annette Seabury.

And that does it for this show, which was produced and edited by Carl Sigmond. Special thanks to Courtney Williams for her support. To listen to this show again, go to FREED.org/disabilityrap or wherever you get your podcasts. I’m Carly Pacheco with Carl Sigmond for another edition of Disability Rap.

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