R5 Evaluation of Remote Augmentative and Alternative Communication Service Delivery
Amyotrophic Lateral Sclerosis (ALS) is a progressive motor neuron disease resulting in both mobility and communication impairment (Phukan'09). Individuals with ALS typically receive speech-language therapy from home-care speech-language pathologists (SLPs) who may not have much AAC experience. Challenges in providing AAC services to individuals with ALS include difficulty traveling to the AAC clinic and rapidly changing motor skills requiring frequent device changes.
An individual with ALS who receives AAC services at the UPMC Center for Assistive Technology (CAT) will make several visits to the clinic. At a minimum, the client will visit the CAT for an initial evaluation and a second visit to receive a trial device from Pennsylvania’s AT lending Library (PATLL). There is a follow-up by telephone after the loan period to finalize the recommendation. A manufacturers representative or a home-care SLP will deliver the purchased device to the client’s home, and provide initial training and configuration. Any additional training sessions for the client are conducted at the CAT. Once training is complete, the client receives little or no follow-up support from CAT. We propose a very different model of service delivery in which TR technology allows services to be delivered from the CAT to a client’s home or regional clinic.
Unlike previous research, we propose to use a relatively large homogeneous subject population and several consistent outcomes measures. In addition, prior work in this area has been qualitative, and focused on the utilization of low-bandwidth POTS whereas we will apply a more sophisticated synchronous and asynchronous TR infrastructure.
The objective of this study is to determine if individuals can obtain appropriate prescriptions for AAC technology through the use of a TR system. We will compare an entirely TR-based service delivery program, an entirely in-person program that mirrors current practice in most clinics, and a service delivery program that combines both in-person and TR-based interaction.
Each participant will be assigned to one of three groups:
- The Control group will receive all AAC services at the CAT.
- The Mixed group will receive the initial assessment at the CAT and all remaining services at a remote facility and/or their home through TR technology.
- The TR group will receive all AAC services through TR technology.
The assessment protocol for all groups will mirror that which is currently utilized in the CAT at UPMC and accepted by UPMC Health Plan and other funding sources. For members of the TR and Mixed groups, a local SLP with general knowledge in many areas of rehabilitation, but requiring assistance from a specialist in the area of AAC, will be identified. The TR group will receive services with the following protocol. The Mixed group will have the initial assessment at the CAT and then follow the remaining protocol outlined below.
Additional stakeholders (e.g., family members and caregivers) can participate either in person or remotely.
- The client and local practitioner will be asked to fill out the intake form on the computer with assistance from the specialist practitioner. The information will be verified and discussed during the initial TR session.
- A physical and cognitive examination including the assessment of strength, dexterity, and ability to participate in various ADL will be assessed by the local practitioner with assistance and direction by the specialist observing via TR.
- Client needs and goals related to AAC will be established and documented.
- The client and local practitioner will configure and try AAC devices relevant to the client’s needs and goals while guided by the remote specialist. The specialist will discuss various features and applicability of potential devices.
- The team (including the client, et al.) will identify a device that appears to meet the client’s needs and goals via this interactive session.
- Arrangements will be made to borrow a candidate device from the PATLL. The device will be delivered to the client by the local practitioner and observed by the remote specialist in a subsequent TR session. Ideally this session will occur in the environment(s) where the device will be used.
- During the trial period, the client uses the web-based IDA system to determine whether the device’s configuration should be modified.
- After the trial period, the team will meet for a third TR session to review the client's goals and needs and generate a recommendation.
- The specialist, in collaboration with the local practitioner, will prepare the Letter of Medical Necessity that will be submitted to the funding source.
- The AAC device will be delivered to the client with the local practitioner present and the remote specialist observing and directing as needed via a TR session. Configuration and delivery of the device will also involve training in the use of the device that can be directed as needed by the remote specialist.
- Subsequent TR sessions with the client and local practitioner will be conducted to provide training as authorized by the funding source. Training sessions will be archived for later use by stakeholders who cannot participate when sessions occur.
- The remote specialist can record additional video lessons for review by the client in between training sessions.
- In between training sessions, the client uses the web-based IDA system to determine whether the device’s configuration should be modified.
- After training is complete, the client uses the web-based IDA system every three months to determine whether the device’s configuration should be modified.
- After training is complete, the client can review archived lessons to learn about additional features of the AAC device
Expected Findings and Deliverables:
It is anticipated that this work will serve as a basis from which service delivery models can be developed to better serve a growing population of people with disabilities that reside in underserved regions. We thus seek to determine if individuals with disabilities can obtain appropriate prescriptions for communication technologies through the use of a TR system, thus sparing them potentially expensive, time-consuming and difficult travel to a physical clinical site. The findings could very well lead to the development of new coverage policies for TR services by an insurer. TR technology has a great potential to complement existing AAC service delivery methods. We anticipate that service delivery mediated with TR technology will enable us to provide better AAC services, and that such findings will facilitate the implementation of (and reimbursement for) TR services throughout the country.
Throughout the course of the study, we will collect a significant corpus of data from real-world use of AAC technology, along with several outcomes measures. This information will be useful to clinicians and researchers evaluating their own clinical outcomes.
We have recruited 33 participants: 8 in the "standard care" group, 18 in the "mixed care" group and 7 in the "completely remote care" group. We have purchased two laptops and several web cameras and speakerphones for the project. We have also purchased two Verizon Wi-Fi accounts.
We have recruited six participants: four in the "standard care" group and two in the "mixed care" group. No participants have been recruited for the "completely remote care" group. We have purchased a laptop and several web cameras and speakerphones for the project. We have also purchased a Verizon wi-fi account. We have conducted several trial remote sessions and two actual remote sessions. One lesson we have learned is that it is unreasonable to expect a client to set up the TR equipment without assistance from someone with training. Positioning and connecting the cameras, speakerphone, laptop and wi-fi modem is complicated and time-consuming. For that reason, we have an investigator bring the equipment to the client's home for each TR session. We have had discussions with UPMC about using some of their satellite clinics as remote locations for conducting AAC evaluations.
This project is not scheduled to begin until Year 2 of the award