STAR Point Transcript - United Cerebral Palsy of Minnesota
Guest: Jo Erbes
Host: Earle Harrison
Intro music and ID:
From the depths of ingenuity to the heart and soul of assistive technology for people with disabilities, STAR is a System of Technology to Achieve Results!
STAR Point does not endorse or recommend any product, individual or agency. The information expressed on STAR Point is informational in nature and does not imply endorsement by STAR's funders: The National Institute of Disability Rehabilitation Research or the State of Minnesota.
Transcript begins here:
EH: Hello, and welcome to another edition of STAR Point. Our guest today is Jo Erbes, Executive Director of United Cerebral Palsy of Minnesota. Jo, thank you so much for joining us today. Why don't we start out by finding out a little bit about what it is you do at UCP.
JE: I've been with UCP since May of 1991. I'm the executive director and so oversee all of our programs and our fundraising activities and also do some lobbying and advocacy work in all aspects of life, whether it's transportation, housing, most importantly, communication, education, social/recreational activities.
EH: Is UCP a state-run organization, or is it private?
JE: We are a nonprofit organization that provides services statewide, with the exception of Stearns, Benton and Sherburne Counties, and there's a local affiliate, United Cerebral Palsy of Central Minnesota, that provides services in those three counties. We are a part of a national organization that has approximately 111 affiliates, as we're known, nationwide.
EH: And what are the types of projects that you're involved with currently?
JE: We have information and referral, we have a parent support group, we have adult support groups for people with disabilities, and we have the Minnesota Assistive Technology Loan Network, or MATLN.
EH: That's actually posted on the STAR site.
JE: Yes, it is. Our database is hosted on -- on STAR's website.
EH: How does that program work?
JE: Well, the program started in 1983. Actually, our lending library of augmentative and alternative communication devices started in 1983. We loan out for trial prior to purchase augmentative and alternative communication devices, both high-tech and low-tech devices for people to try prior to purchase.
EH: Okay.
JE: And we became connected with STAR about two years ago when we received a grant through a legislative process that was administered by STAR to develop a database that contains the assistive technology equipment that's housed in a number of different organizations, and it's put on a database and people can access different types of assistive technology through that database.
EH: So it's not just augmentative communications?
JE: Other organizations. It's not just augmentative communications. Our committee, our MATLN committee, has made the decision that we will work specifically with communication equipment, hoping at some point to expand into computer access. We're right now working with communication equipment only. We are not going to get into walkers and wheelchairs, canes and those types of other forms of assistive technology. Organizations such as the Fergus Falls Regional Treatment Center, for example, who has their equipment listed on the database, may have other ties of assistive technology listed on the database that they loan out.
EH: How long is the trial period?
JE: Our trial period is for 30 days. We do loan equipment out to people whose equipment may be sent in for repair, and sometimes that takes longer than 30 days, and so we can extend the loan period depending on the need of an individual. We have some older devices that are not being used very frequently that we can loan out for longer periods of time if needed.
EH: Okay. So you are there for people who might be having their own equipment serviced, but certainly for people who are realizing a new need for this type of equipment. What type of funding options are there for people who want to purchase the equipment if they decide that it does indeed suit their needs?
JE: Medical Assistance funds augmentative communication devices. Medicare has now started a program that they will pay for communication systems, but they do not have all the bugs worked out, and so it's become a real challenge. Some individuals' private and health insurance policies will pay for communication systems. Schools right now, for students, are required by law to bill Medical Assistance if the child is covered by Medical Assistance, and to work with the family to get equipment for just through their private insurance.
EH: I see. So they're actually required by law?
JE: Schools are required by law to tap into Medical Assistance for the purchase of either equipment and/or services that are medically necessary but provided in the schools.
EH: I see. Are you ever met with a situation where Medical Assistance will not reimburse but it falls on the school's shoulders to be able to provide that equipment?
JE: A number of years ago that is the way it was. Schools were required -- if it was included in the student's IEP, the school itself was required to purchase the equipment. With this change in the law, the school is still responsible, but they can tap into Medical Assistance.
EH: I see. You offer lifetime services for people with CP?
JE: Actually, the Minnesota Assistive Technology Loan Network is available to anybody any age with any disability that has a communication disorder. It's not just available to people with cerebral palsy. And, yes, it is a statewide program, so it is available to anyone within the state of Minnesota. We encourage families and/or adult consumers, whatever their disability might be, to go through a speech-language pathologist or someone who's very knowledgeable about a variety of equipment, so that there is some support in place for those folks both during the trial period and after they purchase the equipment.
One of the things that we're hearing a great deal about is that people are getting equipment and they don't have the follow-up support necessary to help them learn how to use the equipment, how to use it in natural environments, and so we want people to be very, very successful in their use of communication equipment. We know a lot of people have purchased equipment that's not used and may be sitting on a shelf somewhere, and we really do want people to be very successful when they're using communication equipment.
EH: What does UCP do to help insure that this equipment is being used and implemented?
JE: One of the things that we're doing for a second year in a row in conjunction with Dynavox Systems and Dynamic Duos is, we're sponsoring a day at the zoo for people who use communication equipment, and this year we're going to be at the Como Zoo on June 19th, and it's an opportunity for people to network with others who also use communication equipment. Last year we had 80 people participate from the ages of 10 to 60, communication device users and their families and their support workers, and it really did give them a chance to see people using other different types of equipment and be able to communicate in a natural environment with others who use communication systems.
EH: You know, it sounds like a very serious event, but you have a really fun name for it that you didn't mention.
JE: Oh, I'm sorry.
(Laughing.)
JE: It's called Zippity Zoo Day.
EH: Zippity Zoo Day, that's right.
JE: Zippity Zoo Day, and we are going to have a scavenger hunt through the zoo, clowns, face painting; a number of fun activities for people to participate in.
EH: That sounds like a blast.
JE: Last year was fun. We picked the hottest day of June, however.
EH: Well, I'm planning to be there.
JE: All right!
EH: STAR enjoys a wonderful partnership with UCP. What other types of partnerships do you want? I know a couple weeks ago we had Joan Breslin Larson from the Department of Children, Families & Learning. Do you do much work with them?
JE: We do a lot of work with the Department of Children, Families & Learning. In fact, last year they gave us a grant that we used to purchase equipment that's specifically used in the schools. We have enjoyed our partnership with STAR greatly. I might just also say that through that partnership we have been involved with the Minnesota Assistive Technology Network and through -- I believe they're called Regional --
EH: What we used to know as CAN.
JE: What we used to know as CAN, the Community Action Network.
EH: Right. Now they're Assistive Technology Networks.
JE: Right. And two years, part of the grant that we received from STAR was to do a series of workshops, and we actually did 14 workshops around the state, working with the regional Assistive Technology Networks and PACER Center to provide training to professionals, consumers and parents on the evaluation and assessment process and what all is included in an evaluation and an assessment, including the trial of equipment prior to purchase. Our committee is looking to develop some additional resources and trainings in that area so that we can continue to train people on how to do evaluations, and also, as I spoke earlier, once you get the equipment, how to provide the supports in the community that are necessary. And as the process is continually changing, there will always be need for people to know how to access and how to do an evaluation.
EH: Uh-huh. And do you have any folks on staff who are qualified to do these evaluations?
JE: We don't have staff that's qualified to do evaluations at this point. We may at some time in the future do that, but right now we are working with organizations like Gillette, Courage Center, a number of organizations statewide, the Spot rehab out of Saint Cloud, Bethesda here in Saint Paul, Owatonna hospital in Owatonna. We've worked with a number of other organizations and really feel that those people who are in the communities are going to be able to provide better assessment and follow-up.
Our staff, Rick Peterson at the pilot time, is very familiar with equipment, and when a speech therapist may call up and say, "I have a client," describe the individual's ability, "and these are the devices I'm looking at. What do you think?" Rick is able to at least give them some guidance as to what they might want to try, what specific devices they want to look at as they're looking at the kind of things that they want their client to be able to do.
EH: Could you just talk a little bit about what it is augmentative communication devices help people do?
JE: Earle, there's a variety of communications devices and/or systems. They, in some manner, help an individual communicate. We all communicate using body language -- our eyes, our hands, as well as our voices. And for those individuals who have lost their ability to communicate with their voice, there are a number of alternatives. One of the most simplistic communication devices is a word board or a picture board that, as you're someone who is starting out or has just recently lost their ability to communicate, they may have a word board where they actually point to words so that they can say a sentence or a yes/no answer, or whatever their selection may be.
In the case of some children, in order to determine what their cognitive abilities are, they may have a picture board that shows what they want. Then we can progress to something that has voice output, and there are a number of voice output types of things. One of them may be a synthesized speech, which is maybe a four- or up to a nine-location type of device that, behind each different location, someone has spoken a message. For example, you may have a picture or an icon behind one keyboard stroke that says, "I want a drink of water," so that when that individual pushes the button, that says, "I want a drink of water."
The other method would be a digitized speech, which digitized speech is when you type in a word, the computer type device will actually speak back the letters and/or say the word. And they get very, very sophisticated, to the point where you can type in a letter, and it has word prediction on it. So that if you want to type in the word "who," you type in the W, and a variety of W words will appear, making it somewhat easier for the individual to choose what they wish to say.
Devices range anywhere from the very simplistic word board, can be done on a piece of cardboard if that's what works for an individual, up to about $8,000, depending on what you want the device to say. Some of them have a combination of letters, numbers and pictures or icons that help an individual to be able to make their selection for what they're saying.
People access these pieces of equipment in a variety of ways, depending on a person's disability. They may not have range of motion that they can reach a keyboard or that they can push a button, and so a number of people may use switches to access equipment. Some of the equipment scans so that it will go down a particular row, and the individual may push a switch to stop the scanning device on the row that it wants, and then it will switch and scan columns; and they will push a column as to what they want, and then it will say whatever it is that is behind that particular picture or icon.
There's a variety of switches and a variety of ways to access equipment. Some people may use their elbows. I'm sure that you, as well as many of your listeners, are familiar with the movie "My Left Foot" in which Christy Brown accessed whatever he did with his foot. And so wherever there is controllable motion is how you may access a switch.
A lot of people use their head, even, with the new infrared possibilities. They're using infrared on glasses or heads so that they can do a head pointing to a scanning piece of equipment. So when you talk about augmentative communication systems, you need to talk about the whole system. If you're mounting it on a wheelchair, what's the best access method, as well as the actual piece of equipment.
EH: If you're just joining us, you're tuned to STAR Point, a project of the Minnesota STAR Program, a System of Technology to Achieve Results. Our guest today is Jo Erbes, Executive Director for United Cerebral Palsy of Minnesota. We're going to take a short break, and when we return, we will continue our discussion with Jo.
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EH: Welcome back. You're tuned to STAR Point, a project of the Minnesota STAR Program. STAR stands for a System of Technology to Achieve Results. Our guest today is Jo Erbes, Executive Director of United Cerebral Palsy of Minnesota.
JE: Communication is important to everybody, and in 1992 the American Speech Hearing Association developed a Communication Bill of Rights. The Communication Bill of Rights basically says that all persons, regardless of the extent or severity of their disability, have a basic right to affect, through communication, the conditions of their own existence. Beyond this right, a number of specific communication rights should be insured in all daily interactions, and that includes that anybody can control their environment, can communicate with the people in their environment, whether it's people in school, whether it's people in the workplace, whether it's medical visits and trying to work with employers and social workers and personal care attendants and family members in getting all of them involved when we're dealing with an assessment or just plain communication. We all need to communicate. It is a basic right.
EH: Uh-huh. And does UCP act as an advocate for people who might be coming up against some brick walls in that regard?
JE: We certainly try. We -- as people call into our office or contact us through e-mail and express what their frustrations may be, that's also why we're working with training professionals is that we need the professionals to understand the importance of communication at all levels and get them to assist in understanding what people's rights are and that no matter what the disability is, that an individual does have the right to control their environment.
The Communication Bill of Rights is not necessarily a piece of legislation as much as it is a premise that an organization has adopted that talks about the ability for people to communicate. It is the right thing to do. Everybody does have the need to communicate. We all communicate every day, depending -- you know, we all may do it differently. I think one of our other big parts is developing acceptance and training people so that they will be patient with someone who's using a communication device, because it does take longer for them to communicate, and it is important for them to say whatever it is they have to say, and it is important for us, as the listener, to be patient and wait for them to say what they have to say.
A number of people that we work with don't mind if we finish a word for them. However, if you are the listener, I would ask the individual communicating with you if they mind, because sometimes they want to be able to say the whole word themselves even if it takes a little longer, and it does take a little more patience to listen.
EH: I recently -- you mentioned Rick Peterson earlier. He just gave me a CD where a gentleman's actually using his desktop to sing. Have you heard that?
JE: I have, and the individual you're referring to is a wonderful individual. He got communication devices to do things that the manufacturers did not know they could do. This was about eight years ago.
EH: Yeah. I bet that he wouldn't mind you giving him a plug on STAR Point.
(Laughing.)
JE: Well, Snoopi Botten has produced two CDs, actually. Some of it is his own music. He has done duets with different communication devices that he uses, which is a remarkable feat in itself to get two devices to sing at the same time. When I met Snoopi, probably eight years ago or so, he was working with a device called the Light Talker or Touch Talker, and he got that device to sing, which was a surprise to the manufacturer, because they did not know that you get the device to do that. Since then Snoopi has developed some technology that he has worked with Frankie Romek and Dynavox Systems to create music that is on the devices so that individuals can enjoy the opportunity to sing, whether it's with their church choir or in a church. He has recorded a variety of music, from gospel to the Star Spangled Banner.
EH: It's really remarkable. Other than music, what other types of implementation is there for this technology?
JE: Well, we use a lot of volunteers to do speaking engagements, whether it's in a business or in a school. We have an individual who we're trying to get her some opportunities at library story time. She reads stories in day-care centers and actually programs the story into her communication device and then reads them by playing back the story at various day-care centers, and we're trying to get her into a library situation.
We have a gentleman that we work with that's a CPA that uses a communication device to communicate with his clients in his place of employment. We have a number of people who are going to be speaking at our annual conference in the next couple of weeks, that are going to be talking about how they control their environment and how they can work with their personal care attendant in their home, and we have a number of people who, as I said, speak to businesses and educate employers, educate the employees on what it means to need a communication device, how they work, and what they have to say as far as living with a disability.
EH: And I understand you have a recycling program for this technology as well.
JE: We do. We encourage people to donate their equipment that they're not using to United Cerebral Palsy's lending library, and we then share it with other individuals. We like to have the equipment be relatively current, because as technology has changed, so definitely has the technology in communication systems. And we will give the individual a tax receipt. They then have a tax write-off that they can use for the donation, and then have also shared that equipment with others who can still use it.
EH: Okay. So you've got all these great ways for people to get their hands on the technology. How can they come out and actually kind of demo the equipment?
JE: People are certainly welcome to come into the office, and we encourage that they set up an appointment so that we know what equipment that they're looking for and to make sure that we have it available. They're welcome to come into the office. At some point we hope to actually create a center where we have equipment available at all times. Otherwise, people can call the office, but what we would really prefer is that they either send us a fax that identifies the individual, the disability, the age, the county of residency, or send us an e-mail with the same information, asking for a specific device. And we really encourage you to start by asking for a specific device, because, as I said earlier, we're not going to tell you which device to try, but we can at least direct your inquiries to a device, but it helps to know specifically which ones you're looking for when you make a request.
EH: Uh-huh. Do you recognize any trends towards implementing this technology in more mainstream applications, like Palm Pilots and things like that? Are you aware of anything like that?
JE: The devices have definitely become smaller so that they are more portable. They're easy for people to carry around with them. I don't know that they'll -- well, there are some devices, actually, that are as small or even smaller than your, quote, unquote, "Palm Pilots." There's one that a person can wear on their wrist, has four different messages on it. The trend, I think, is to become -- for the devices to become smaller but also easier to use for a wider variety of people.
EH: So there's not just software that a person can download or install on their computer and turn their computer into a communication device?
JE: One of the problems with that is that Medical Assistance will not pay for something on a computer.
EH: Really?
JE: Because the technology is not necessarily medically necessary. There is a device on the market that is a laptop computer that has the computer chips taken out of it, if you will, so that it can be used as a communication system and not as a computer. In order to do that, Medical Assistance would not pay for that particular software. You can buy the software yourself and install it on the computer, but that's not necessarily encouraged.
EH: What's a typical battery life on one of these devices?
JE: Depends strictly on the device, because some of the devices use a double A or a triple A battery, and some of them use a larger battery, but most of them can run for about eight hours at a time before they need to be charged on the bigger devices. The smaller ones may use a double A battery, and so those I don't think have quite the shelf life that the other ones do.
EH: Well, if you're just tuning in, you're tuned to STAR Point, a project of the Minnesota STAR Program. STAR stands for a System of Technology to Achieve Results. Our guest is Jo Erbes with United Cerebral Palsy of Minnesota, Executive Director. Why don't we go ahead and talk a little bit about some of the upcoming events in the year 2002.
JE: We are planning an evening with the Minnesota Twins on Monday, June 10th, Twins against the Atlanta Braves, and we will be selling tickets for that. I'm pleased to say that last year when we did this event we sold out at the stadium for all the wheelchair seating.
EH: Really?
JE: So we had a wonderful turnout and are looking forward to that.
EH: And who won?
JE: I don't remember.
(Laughing.)
EH: Who's your money on this year? It gets --
JE: The Twins!
EH: Okay. You heard it here, folks. Of course it's the Twins!
JE: Of course. We have a golf tournament coming up in July that helps raise money for some of our other programs, which one of those includes advocacy. And if I can digress for a moment, Earle, one of the pieces of legislation that we are watching on a federal level is the Tech Act. That's up for reauthorization, and Minnesota has a keen eye, I think, on what's happening with that federal legislation, as it helps to fund the programs and services that the Minnesota STAR Program has been involved with over the last couple of years.
EH: So you've got baseball, golf --
JE: The zoo.
EH: -- and Zippity Zoo Day. Let's go ahead and talk about that again.
JE: Okay. Zippity Zoo Day, June 19th, at the Como Park Zoo from 9:30 -- planned activities will end at 2:00. People are encouraged to stay at the zoo longer if they like. Scavenger hunt, the carousel ride, visiting the Conservatory, face painting, clowns and activities, some games; just a real fun day at the zoo.
EH: And if you're listening to this in our on-demand section, you'll note that there's a direct link to UCP of Minnesota, but why don't we go ahead and give folks contact information.
JE: People can reach us by calling 651-646-7588. If you're outside of the metro area, our number is 1-800-328-4827, Extension 1437; and to visit the website, we encourage you to contact MATLN. That's M-A-T-L-N.org, O-R-G. And the website includes not only the database but a calendar of activities, how to contact other disability organizations, how to contact vendors of equipment. I really do encourage people to check the website out.
EH: You've been listening to STAR Point, a project of the Minnesota STAR Program, a System of Technology to Achieve Results. Our guest has been Jo Erbes, Executive Director of the United Cerebral Palsy of Minnesota. Jo, thank you so much for joining us today.
JE: Thank you, Earle, for having me.
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You've been listening to a broadcast of STAR Point, a production of the MN STAR Program, a System of Technology to Achieve Results. If you would like to provide feedback, be a guest on our show, or if you'd like to find out more about the STAR Program, please visit our Web site at www.admin.state.mn.us/assistivetechnology. My name is Earle Harrison. Thank you for listening.