Glenn: Well, assistive technology, or AT for short, has been defined in different ways over the years. In some federal reports and legislation, to paraphrase, AT has been defined as equipment that may be used to increase or maintain an individual’s functional capacity. Assistive technology is also viewed as including services, in addition to that equipment, such as the evaluation component, any customization of equipment and training that is necessary for the user of the assistive technology, as well as any other important individuals.

Faye: Now Glenn, why would children who have special health care needs need assistive technology?

Glenn: Well, in some cases, assistive technology addresses medical issues such as mobility and seating systems that would go in mobility bases and also communication aids. But in other instances, assistive technology is used to address a non-medical issue that may exist because of limitations a child may have due to their disability, such as activities that may occur at school, in recreational settings and with respect to independence around the house.

Faye: And is AT only for children who have physical disabilities?

Glenn: No. Certainly there’s probably been more work in the field on issues faced by children with physical disabilities, but there is a portion of AT that deals with cognitive issues, and the ones that come to mind are computer software that may help with educational process, as well as changes to equipment to allow for clearer identification of controls or simplification of controls that may be a little bit different than the control layout of the product initially.

Faye: And who are the medical professionals who are involved both in prescribing AT and in working with children who are using it?

Donna: Well, as a general example, I’ll take my situation is we work with a team of physicians. Our Primary Care Physician is our pediatrician, then we have a Pediatric Rehabilitation Specialist. We have an Orthopedic Pediatric Specialist, and then we work with the dietician, an O.T., a P.T. and a speech person. Whenever possible, it is always a good thing to have a core group of people that have different backgrounds that can be able to evaluate the needs of your child. Parents know that their kids need something. They may not the name. They may not know what it does exactly, but they know what their child needs, and that’s where this team can help. And it’s very important that parents vocalize their gut instincts if they know something’s not going to work, because I’ve always been told by all of my son’s physicians that, "You know your child best. Therefore we’re going to take the lead from you." But it’s very important that, depending on the type of assistive technology a family is looking for. For example, a communication device for a child, you would not want an occupational therapist doing the evaluation because that person is not a speech therapist that may know OCOM. However, that person would be a good person to have on your team for positioning of the device, for positioning for the child to access the device. It’s really a team effort.

Glenn: Well, assistive technology is truly in an interdisciplinary field. The usual professions involved are occupational therapy, physical therapy, speech language pathology and engineering. And within each of those disciplines, AT represents an area of concentration. So the professionals have chosen AT as an area that they want to focus on full-time or for at least a part of their work responsibilities. Social work does get involved in helping to perform case management and advocate for consumers to get assistive technology, and at times, orthodics and prosthetics is included in the area of assistive technology, but since O&P really had much more of a history before assistive technology efforts got formalized in the early ‘70s, usually O&P is spoken about separately, and I’ll sort of leave that out of my discussion as well.

Faye: What is O&P, Glenn?

Glenn: Well, O&P would be orthodics and prosthetics. And those fields--and many times they’re talked about together--really took off in the 1940s after World War II and got their own identification with consumers and with third-party payors. Whereas assistive technology formal work got underway in the early 1970s with federal funding of what were then called rehab engineering centers, or RECs, and they are now called rehab engineering research centers or RERCs. Generally those are currently approximately 17 funded centers around the country. Each one focuses on a different area of assistive technology, such as seating or wheel mobility, computer access, augmentative communication, et cetera. Now that research work began in the ‘70s. A lot of products became available through their efforts and through the private sector efforts that were going on, and in the 1980s, the term "rehab technology" sort of took hold because engineers weren’t necessarily required to issue the technology. In the ‘90s, the term "assistive technology" became the term used because the term "rehab technology" sort of had medical model connotation to it and many consumers of assistive technology are not perhaps dealing with a medical issue at the time, and so assistive technology became the term that became used more often.

Faye: Now, Glenn, what is the role of pediatricians and pediatric specialists in relation to assistive technology for children?

Glenn: Well, within medical facilities, certainly all work ultimately gets authorized by medical prescription. I would say the identification of the need to investigate assistive technology as an option to address a certain issue that a child may be facing is the most important role, and getting that ball rolling with the other professionals on the team. So a pediatrician may write an order to have occupational therapy investigate a certain issue, and within that profession, they may call upon assistive technology when appropriate, or to any other area that they make referral to.

Faye: I see, and something else we hear about is low-tech and high-tech assistive technology. Could you explain what this means and maybe give us some examples?

Glenn: Well, I think everyone has a different definition of low-tech and high-tech. What usually comes to mind are high-tech devices such as voice input systems for computers and touch screens, let’s say especially common in school settings, at the high-tech end. Low-tech, usually in the form of adapted utensils or adaptations to controls to enable a child to use a control with more leverage or a larger target area, as they’re trying to activate a switch, for instance. The key is trying to find just the right level of technology. Dudley Childress is a rehab engineer in the field, and he often presents on finding the right tech, the right level of technology no matter where it is in that spectrum. And then the service provider has the task of, in their documentation, of stating why this right level of technology is the most appropriate combination of technology for that child.

Faye: Okay, and which government agencies are involved with assistive technology?

Glenn: Well, funding of assistive technology often is a matter of Medicaid and Medicare, but certainly Education is involved and in certain states, Department of Human Services or Vocational Rehab. And each one of those agencies has different criteria for what they are mandated to provide for citizens of their state or their region, and it’s, again, the job of the service provider to state for that third-party payor how the proposed assistive technology is fitting into that mandate.

Faye: Okay. And where would you recommend that families go to find out more about AT?

Glenn: There’s a couple of web sites that are especially useful; Abledata, spelled as one word, a-b-l-e-d-a-t-a, abledata.com is a web site that has a listing of approximately 20,000 disability-related products. And by going to that web site, a person can do a general search or look for a specific product and get a paragraph description of that item and approximate cost, information on how it may be available to the person, either directly from the manufacturer or through local vendors, and in some instances a picture of the device itself. Now for information on assistive technology, the field, and resources that may be available in a person’s general area, their state or local area, RESNA is a good organization to try and obtain information from. That’s r-e-s-n-a-, and in the ‘70s when RESNA started, it stood for Rehab Engineering Society of North America. As more products got out there, as we spoke about earlier, and engineers were not needed as much in the issuance of equipment. Therapists and consumers directly could tap into assistive technology. Resna kept the acronym, but it’s now known as the Rehab Engineering and Assistive Technology Society of North America. Now at the RESNA web site, www.resna.org, a person can get information on the field itself, on RESNA’s certification program for service providers in the field and also click on the link called "Technical Assistance Project." Now that’s a grant that RESNA has from Washington to help coordinate efforts of state-based, technology-related groups that are also funded by the federal government to increase awareness of and access to assistive technology within their state. So by going to the RESNA web site, clicking on "Technical Assistance Project," you can be linked after that with any of the technology act related entities in the 50 states and U.S. territories.

Faye: Well, Glenn, you’ve given us some really excellent resources, and to let our audience know, all of the web sites and organizations that Glenn has mentioned can be found in the Resource section of this webcast. So they’re written down there and you can go and find more specific information about a particular topic or device, and also your state-specific information. Now when we’re thinking about assistive technology for children, does it apply to children of all ages, and does it apply to babies and toddlers, Glenn?

Glenn: It can. There may be medical issues that babies and toddlers face, but also, especially as babies and toddlers are worked with by occupational therapists and physical therapists and speech language pathologists, any issues regarding the child’s development that may be able to be assisted by technology is certainly open for consideration. They would work with the child and the family to describe, most accurately, the person--child’s--developmental stage and see if there’s the need for technology to perhaps augment the therapy that they’re providing. So it can come into play, yes.

Faye: So, that would apply to things like switch-operated toys and other things that where that child’s learning activities are presented in the form of play?

Glenn: That would be an example, and certainly there’s issues regarding mobility and stability and sitting positions, and things like that.

Faye: Now is AT expensive, and who pays for the evaluations and the devices?

Glenn: Well, it can be expensive. You know, assistive technology can range from a $10 switch to a $15,000 wheelchair, and that would be a wheelchair, you know, powered and having some sort of, perhaps, tilt and space mechanism to help a child do pressure release independently. So, it can be. Again, by working with an AT service provider who’s experienced in working with the third-party payors, the documentation that’s produced after an evaluation makes the case for the proposed assistive technology to be funded by that insurance company or governmental agency. And again, the service provider has to make the case of how does it fit into that entity’s existing mandates.

Faye: Okay, now Glenn, does public health insurance such as Medicaid, Medicaid Managed Care, as well as the State Children’s Health Insurance Program, does it cover assisted technology?

Glenn: Well, in Illinois, we’re more familiar with working with public aid. Illinois’s Department of Public Aid being the Medicaid entity here, and IDPA for short, does pay for wheelchairs and seating systems, and as of about three or four years ago they began to pay for augmentative communication devices. We have not worked with Children’s Health Insurance Program run by the State. Sometimes special initiatives create initiatives regarding addressing of new issues faced by children, but some of that paperwork still goes back to Medicaid. That may or may not be the case here. We--our clinic has not had the experience of working with state-based health insurance programs. But quite often, we do work with Medicaid in those areas. And then we work with other entities when there’s other areas of assistive technology that are being investigated.

Faye: Okay. And again, for our audience, we will have links to resources within your own state, both for assistive technology and for your state Medicaid agencies so you can get more state-specific answers to any questions you may have. So, then, as you say, it is definitely covered by EPSDT and Medicaid. Is assistive technology covered by Early Intervention, Glenn?

Glenn: We have not worked with Early Intervention specifically. I know Early Intervention sites are stated as a source of assistive technology, and certain an Early Intervention location can request services from a clinic, but I think the professionals working at the Early Intervention site, if they identify technology as an area to investigate, more often than not, that would still come back to the state’s public aid system for the actual funding of the equipment itself. And in the case of EPSDT, that again is a system that is set up, but ultimately the paperwork still comes to public aid and they review it under their medical issue criteria.

Faye: Now, yeah EPSDT again is the federal regulation--federal legislation related to Medicaid for children and, we know, we’ll have a link for Early Intervention because assistive technology is one of the 16 early intervention services that is covered by the federal legislation. And what about the State Title V, Children with Special Health Care Need programs, do they cover assistive technology?

Glenn: Well, the Title V entity within Illinois is the Division of Specialized Care for Children, and they do consider assistive technology. I’m most familiar with them funding technology in the area of seating mobility, communication aids and also accessibility changes to a child’s home environment, usually in the form of perhaps bathroom modifications, transfer lifts, and modifications that may be made to one entrance to make it accessible.

Faye: Well, those are really, really important services. So thank you for going over them. Are there any other government programs that we should know about that pay for assistive technology?

Glenn: Well, as far as the government programs, the Department of Education would be involved, but we’ll talk about school systems in a bit. Vocational Rehab, in Illinois, does begin to work with students in their junior and senior year of high school to prepare them for employment or for further education. And quite often we get referrals from vocational rehab counselors trying to make sure that the student gets the most preparation out of the high school years, maybe assistance in employment in an after-school program, or preparation for what they will need for college as they graduate from high school. So for older students there is some contact with the vocational rehab system.

Faye: Okay. And does private health insurance cover AT?

Glenn: They do, most often in the areas of mobility and communication. So they perhaps would not be the entity looked toward for computer access or the other equipment like that. I would also mention that several states have loan programs that families might want to tap into to enable purchase of assistive technology if the family needs to investigate that on their own, can make the assistive technology a bit more affordable by spreading the payments out under a low-interest loan program.

Faye: Now what kind of health insurance does Jonathan have?

Faye: And, well, that’s good to hear. Now, how did you find out whether or not the assistive technology that he needed was covered by his insurance?

Glenn: Well, most of the technology that we’re speaking about does involve an evaluation meeting to be performed, and the professionals that are performing that evaluation should have experience working with the third-party payors and should work with the families on getting what’s called "prior approval." Now most service providers are actually going to look into that prior approval for the evaluation itself. There is a charge for most evaluations at most service providers, and that cost needs to be investigated before a lot of clinics will perform an evaluation. So they’re going to make contact with the third-party payor to cover that stage of it before the appointment’s ever scheduled. And if it’s the same third-party payor afterward that service provider’s documentation would go to that insurance company or that government agency for prior approval for the implementation stage.

Faye: Okay. What should families do is the claim for AT for their child is denied?

Glenn: Well, each system has a process for submitting the documentation again. Unfortunately, we all know that sometimes the feedback that one gets at the first try for coverage of a health issue is not that extensive. But whatever reasoning is cited, sometimes the reports can be rewritten or added to, in order to provide any missing information, and go through that appeal process is usually worth the effort. At times, the government agencies have a panel that would review something that’s been denied perhaps twice before and so it might be a different group of individuals looking at a request, rather than the first entity that had rendered the first decision and denial.

Faye: I see. And we will have also links on our web site for getting more information about insurance appeals and dealing with denials. Those were in some of the earlier webcasts we actually did in this series. Now what about if the family doesn’t have any health insurance, how could they access assistive technology?

Glenn: In those cases, it would be Illinois Department of Public Aid here, as well as perhaps Medicare kicking in, and through the school systems, again fitting in with their mandates to provide equipment that would assist an individual in addressing a medical issue or an issue of functional independence at home or performing of educational activities at school.

Faye: Now Glenn, we’ve touched upon the role of the school system. Could you give us a little bit more detailed information both for children who have IEPs, individualized education plans, for special education needs, as well as for children who would have a 504 plan, meaning that they have special health care needs but not special education needs. How is the school involved with AT?

Glenn: Well, the primary way we work with schools is to investigate assistive technology where the team has identified that with the parents, and the most important way that is done is through the IEP itself. Now a school system may say that they have their own internal mechanism for addressing assistive technology and that may clearly be the case. Probably 10 and 15 years ago, there weren’t many school systems that had professionals that had this as an area of concentration. They may have worked with occupational therapists and physical therapists, and speech language pathologists on their staff or on contract, but as formally having assistive technology as an area, perhaps not. Many school districts now, though, have developed assistive technology teams that are either based at one school or work across schools in a district, and in some cases co-ops that might work across several school districts are utilized to address the assistive technology needs the child might have. Again that being itemized in the IEP, as far as what issues are going to be looked at, getting as specific as possible as to what areas of the assistive technology as well as what mechanism would be used to investigate assistive technology is the best way to go about this because it’s then in writing and everybody can sort of agree on the plan for the future, for the remainder of that school year and into the next school year.

Faye: So what you’re say, Glenn, is that after the evaluation and the IEP meeting, that the school system, if it’s determined appropriate, they will purchase the assistive technology that the student needs?

Glenn: Right. Again, looking into it in an evaluation phase first, either with their own resources or externally calling in clinics like ours, for instance. And then moving on to the implementation phase, where the school district, itself, would fund the purchase of the equipment and of any services that may be needed. If again, they’re tapping into external sources of professionals, then there would be a cost involved for, for instance, programming of a communication aid or piece of computer access equipment, delivering it, training the student and teachers with it and perhaps any ongoing support that a device might need after issuance, regarding programming in of additional vocabulary or adjusting some of the features of computer-based equipment.

Faye: Well, thanks for explaining that. That is a little complicated. We talked before about organizations and consumer groups involved with assistive technology. Do you have any additional ones that you generally recommend?

Glenn: Well, an organization that produced a study of financing of assistive technology in 1993 is the National Council on Disability, and I’ve provided the web site to you for that organization. That was really a landmark study that brought in consumers and families to testify and explain the personal impact that assistive technology had for them or their family member, as well as an overall study of the different areas that are tapped into for acquisition of the equipment and the services that may be necessary as well. So National Council on Disability would be one. RESNA, as we mentioned before, does have a lot to offer, and one thing I touched on earlier was the certification program that RESNA has started to identify, with the title Assistive Technology Practitioner or Assistive Technology Supplier, ATP or ATS for short, individuals that have had the educational background, work experience and sat for a RESNA-generated exam to document a certain level of expertise in assistive technology. And there’s, I believe, more than a thousand individuals across the country that are holders of the ATP or ATS. And visiting the RESNA web site is a way of getting at a list of ATPs or ATSs within a person’s state so they can seek out a certified individual if they would like to.

Faye: Okay, well, those are some really good resources and they will be found, again, on our Resource section. Now, to a more practical matter, should families purchase special insurance for AT devices themselves, or is this usually covered by their homeowners or renters insurance policies?

Glenn: I’m not really aware of anybody purchasing special insurance for an AT device. I think if homeowners or apartment insurance is possessed by the family, and that there’s good documentation of what’s in the house or the apartment, that certainly a device could be covered in that way. In some states, there are lemon laws that have been developed for general assistive technology or specific types of assistive technology to help an individual get some action from the manufacturer or the local vendor of a piece of equipment, if there are repeated problems with the performance of that device. And again the Tech Act entities in a given state would be the best source of information on whether a lemon law exists for assistive technology in their state.

Faye: Because, you know, Glenn, I think I’ve mentioned to your before, as a parent I’ve learned that the best way to have any equipment break is to send it on the school bus.

Glenn: Well, that’s certainly one time when devices get a lot of wear and tear, and service providers have to pay special attention on not only how a device is used but how it’s going to get to school or get back home and, really, what environments the equipment is going to be used in.

Faye: Now, Donna, you brought up the liability issue. Do you advise families to buy separate insurance on assistive technology devices, or is this something that’s usually covered by a homeowners or renters insurance policy?

Faye: Okay Donna, so what you’re saying is a family who has a child who needs or is using assistive technology, needs to think about health insurance as well as other type of insurance, a homeowner or renter and automobile insurance.

Faye: OK. Glenn, now what happens when children transition, say from one school to another or they leave school and they graduate and/or turn 21, and they’ve been using AT devices that are paid for by the school system? Do they get to keep these devices or not, and who decides this?

Glenn: Well, technically, it is a school district purchasing the piece of equipment. It really comes down to that. Where a child may graduate from elementary grades to high school, for instance, and there might be two school districts involved, in some cases the high school’s school district can purchase the device from the other school district. It is a matter to be discussed with the parents through the IEP, and afterwards to determine what the future of that device is going to be. Whether a device is really going to be useful to a school district down the line is questionable, because the devices are continually being improved in the industry and a school district really may not have any use for a communication aid that’s three years old and has gotten three years worth of use by another student. Technically, they did pay for it, but whether it would of use to them or not is questionable. And certainly they would have to know that that device might be out of warranty by that point, and they may do better by just purchasing a new device for the next child down the line. As far as what happens after a student may graduate high school, for instance, again, that would be a conversation that the family needs to have with that school district on what their individual policy on that is, if they have the ability to let the student leave with the equipment or not.

Faye: Okay. Now, can children bring AT devices home from school in order to do their homework?

Glenn: They should be able to, if it’s been specified as enabling the child to perform their required school work in school and to possibly do any homework that the student might have to do after school. So again, it really comes down to how well and detailed that IEP is written, because technically if it says that the device is needed in this room to do this activity and nothing else, then the school district is really not required to let the student take the device home.

Faye: And to mention again to the audience, in our resource center, in our Resource section, we will have a link to the Parent Training and Information Centers which are found all over the country, whose mission is to help with the families learn about special education rights and working collaboratively school systems. And this is one type of issue that they do assist families with. Now do you have any advice, in closing, for families who are interested in accessing AT for their child with special needs?

Glenn: I would say it’s important to work with professionals that are experienced in the area of assistive technology that they’re investigating. Certainly technology is available from a variety of sources now. Wheelchairs and the specialized seating systems that go in those chairs are obtained through clinics, but also directly from local vendors, and certainly many of them have a good deal of expertise. You’re also going to want to tap into individuals that are experienced in dealing with the funding agencies, so that this heightened interest and awareness of the potential benefits of assistive technology are not sort of dashed by, you know, unsuccessful appeals for funding for the implementation of that equipment. I think visiting the state Tech Act sites is a great way to find out about the service providers that may be in the area. Again, the RESNA certification area has a listing of ATPs and ATSs. By working with your state’s program though, you can get at a database that they have access to that can produce a list of purely service providers, who may or may not be certified under the RESNA program, based on your zip code and the radius, maybe a 100 mile radius from that zip code in the area of communication aids, for instance, and those state programs can give you a list of local service providers. I would say the families need to have a good deal of persistence about the issues. Again it’s not uncommon to get a denial when you go for the prior approval for the implementation phase. And when dealing with school systems, hopefully this is more the exception rather than being common in any way, but to try and advocate for the technology and not be talked out of it in any way by a school district that might say, "Well, our resources are very limited, and we really can’t afford this piece of equipment," or they may say that the equipment--purchasing that equipment may reduce the chances of them being able to provide other types of services for that student or other students with disabilities. That’s really not a valid argument on the part of the school districts, and parents should be able to work with the service providers to advocate fully for the acquisition of technology, if it’s appropriate.

Faye: Okay. Well I appreciate your pointing that out, Glenn. And in closing, what advice do you have for professionals who are working with families who may have children that need AT?

Glenn: Well, to just encourage those professionals to seek out individuals from any of these professions that have identified assistive technology as an area of concentration that they want to devote full-time status to, or even part-time status, because it’s very difficult to keep up with the technology that’s coming out on the market unless you really have this as an area of concentration that you’ve identified. The people are out there. It’s not a huge number of professionals, but there are some very easily reachable web-based resources that people can use to get at the service providers that are in their state and in their local area. And that would apply to professionals trying to investigate technology for the clients that they’re serving.

Faye: Now, as we’re getting ready to wrap-up, I’d like to ask you what advice do you have for professionals working with families whose children may need assistive technology?

Faye: Well Donna, Glenn, thank you very much. You’re both very well informed and knowledgeable about the field of assistive technology for children with special health care needs, and I’m really grateful that you made the time to share your expertise with us. Thank you for logging onto our webcast production. We’re really interested in your comments and questions about the webcast and we invite you to contact us. Our e-mail address is cade@uic.edu. Our Internet address is www.uic.edu/sph/cade/kidsmco. Our telephone number is area code 312.996.2233. We’re located in Chicago, Illinois, and we’re on Central time. We hope that you’ve enjoyed this broadcast and that you’ll join us for the upcoming broadcasts. They’re all scheduled for the fourth Wednesday of each month at 1:30 p.m. Central time. Please take note that once we’ve aired our webcast for the first time, it’s then archived on our web site, and you can access it at any time, day or night. Thank you for joining us.