It has been a year since we had our last evaluation for an assistive technology device for communication. The initial assessment was that Elias was not really ready functionally for one. Well a year later we have seen tremendous improvement in Elias' abilities. So it was decided by the team and ourselves that another evaluation and different opinion would be appropriate for Augmentative and Alternate Communication devices (AAC) as communication assistants. When we wrote about our evaluation a year ago we referenced Stephen Hawkings as an example of a person who used a type of AAC. For Elias, it gives him a voice that can eventually connect needs, thoughts and expressions. Right now he is communicating very basic needs and wants, but little more. They are like one word sentences with the use of the picture exchange or gesturing.
Our evaluation session was very informative and extremely helpful in determining where we are in the process and what we can do to get him ready and able to use one effectively. The main reason it is important to ensure he is ready for an AAC is that the devices are typically priced around $7,000 or more. Insurance funding for some or all of the cost can only be submitted once every 5 years. Therefore it is important to find something useful now, but has room for growth.
We have followed and implemented many of the suggested strategies by the first set of AAC evaluations with success, so we are on the right path. This much we know. This latest session told us we are close, but not quite there. So funding requests for a device is still discouraged. However, there are some alternatives that are highly recommended as transitional tools. The technology and concept of Tablets, like the iPad for example has really opened the door for children. There are now several applications which function similarly to their expensive counterparts-yup, the saying is true, 'there is an app for that.' After watching Elias engage with a tablet with amazing proficiency she felt that he was indeed ready to move into this direction. Elias is more interested in a dynamic display , versus the static nature of just the picture cards. While he responds well to those picture cards he is obviously highly motivated by the dynamic screen. The touch screen of a tablet is more easily achieved for Elias even with his hand and arm malformations. He can even eventually be taught the use of an adapted stylus in addition. She is impressed and pleased with Elias' intent to communicate in addition to his ability to use various methods to obtain the results he is seeking. At the end of the session she gave us a very confident and strong recommendation on device and application software that would most optimally suit Elias' needs for now. Her device suggestion is a iPad2 (32 GB suggested for library expansion) with the use of the GoTalk Now application. This program provides the basic use for now and the growth needed as he develops more skillful use. It is also highly customize-able with unlimited digital photos and additional resources. It will also be necessary to find a very sturdy case (we have been given a very good recommendation here as well - military grade protection too), to protect the investment since kids have a tendency to drop them.
So now that the recommendation has been made it is up to us to figure out how to make this happen. We have done some searching to see about grants or other funding sources, but have had no luck. Many of the programs out there we have found are specifically geared towards Autistic children or Asperger's Syndrome patients. The only funding source the social workers have been able to identify as a potential is a waiver in our state especially designed to cover equipment need expenses and adaptable equipment. However, we do not qualify because you can only be on one waiver program. Elias is already on a medical waiver program to help cover the cost of his nursing care - let's not even go there on how poorly that has been going - so we would have to relinquish that, which unfortunately is non-negotiable and not an option. To be fair that waiver is not designed with chronically sick children in mind that need ongoing medical care. It is for children with delays without the "illness and disease." It has become frustrating how Elias falls outside of everyone's "box" of criteria. None of the Social workers or others in positions to provide information on assistance can ever find anything to help like they can many patients. It is not their fault, they can only go with what they know and learn. It frustrates many of them as well. Elias' complex needs medically and developmentally are in conflict. It is like the system can't handle it if you have both, which for serious medical issues and the amount of time in a hospital like Elias has had, delays are inherent. We will continue to search for a way but it seems that we will need to find a way to purchase these things out of pocket. Discussing this with his school and therapy teams, they have other clients who use this type of transitional material and they are pleased with the positive impacts they have seen with those children. In addition to using the iPad2 as a transitional AAC device there are many other educational uses and tools that his preschool teacher and therapist have said they would likely take advantage of having available.
This is the next step in Elias' total communication approach. The ultimate goal is of course for Elias to become verbal, but realistically that is still years away. He still has a great deal to accomplish on the listening side, but with the progress and verbalizing we are hearing from him, the future is bright. With continued Aural Rehab (listening therapy) and speech therapy along with the addition of these new tools Elias will become more independent from a communicative point of view. Creating that independence is extremely important in his overall development. With the progress we have seen over the past year we have seen equal explosion of positive development in all other areas. This will only continue if we keep moving in this direction. That is why we must make this happen regardless of the sacrifice it takes from us to make it a reality.