02/24/2013
Augmentative and Alternative Communication (AAC) and Autism in Florida.
Many of you may not know this, but the process by which AAC devices are acquired for children, adolescents and young adults who are nonverbal or have limited verbal skills (including those on the spectrum) in our state, is antiquated and not primarily set up for the success of an individual. It is a tedious process that is in large part motivated by money and how these pricy devices and systems are paid for. Did you know, that if your child or loved one is on Medicaid, and is still attending school in Florida, that a device cannot be purchased using your Medicaid money without the consent or concurrence of your local school board? Your school board can actually prevent you from acquiring a device using your Medicaid money. I have been told in the past by some that one reason for this is that the school board may be required to pay the difference on whatever Medicaid may not pay for. Also, devices and school concurrence have been denied on the premise that trial devices were not proven to be "educationally relevant." Your school board must deem a device educationally relevant for an individual before it will sign off on a device. Often, this term is overused and misinterpreted as an individual's ability to complete and perform on school tasks using a trial device (a trial is a period of time that an individual is exposed to and gets to use a loaner device in school, home and in the community). An AAC device SHOULD involve an individuals use of the AAC device for communicative purposes within the school setting, not primarily to complete school tasks. AAC devices are considered to be a type of Assistive Technology (AT) device. Many school boards classify AAC under AT. This is not incorrect; however, AAC is in its own right an independent entity under AT, in that AAC pertains to COMMUNICATION, and more specifically optimal and/or independent communication. An AAC device CAN be used to perform on school-related tasks, but is INTENDED for facilitating optimal and/or independent communication. It is important that all parties involved in the acquisition of an AAC device understand the primary function of an AAC device and how to apply it to the guidelines of being "educationally relevant." Unfortunately, not all professionals involved in the device acquisition process consider this distinction, which sometimes results in not acquiring school concurrence on a device, which will in turn result in an individual not being approved for an AAC device by Medicaid.
The process for acquiring an AAC device is a very tedious one. It requires a large amount of data collection, using guidelines set up by your school board. In Alachua County, these guidelines are research-based at least, but it should not be taken for granted that all school boards have equivalent guidelines. You as a parent, loved one or caregiver, are required to keep data and maintain paperwork regarding use of a loaner device in the community and at home. Often you are required to do this with insufficient training on the device and insufficient orientation or training on the necessary paperwork. You can be prevented from purchasing a device using your Medicaid money, if you do not keep sufficient records or data regarding use of a loaner device at home and in the community.
To make sure that your loved ones get a fair shot at an AAC device that they are entitled to and deserve, YOU as parents and/or caregivers must put forth the effort and work necessary for your loved ones' success in using AAC devices for true communication at home and in the community. Many people are denied devices, and/or never go beyond an initial trial (medicaid requires device trials on different devices and regular data collection as part of its approval process), because the devices are not properly promoted at home or in the community by parents, loved ones or caregivers. Don't be one of these families!
There is little we can do to change the system at the state level quickly or even within the school lifetime of our loved ones. We can however, make sure that we as caregivers are proactive in the acquisition of these devices for our loved ones who are entitled to and deserve them. Make the conscious decision to do the following:
1. If you believe that your loved ones, who are nonverbal or limited in their verbal communication skills, would benefit from an AAC device, discuss your concerns with your loved one's school therapists and assistive technologist at the school board level.
2. Educate yourself as to what AAC is.
3. Consider any and all physical and cognitive limitations that your loved ones have, and make sure that these limitations are addressed and accounted for during device trials. If your loved ones have a hard time pointing or using their hands, there are other methods of device access that use other body parts, eye gaze, and temporal or pressure screen adjustments (to name a few) that can be used or implemented to promote more accurate and independent access to vocabulary. All access concerns should be considered as part of the device trials.
4. Familiarize yourself with the people involved in collecting data on your loved ones as they use a device during a trial. Talk to them often!
5. If you are unclear regarding data collection or necessary paperwork, contact the appropriate people within your school board and have yourself educated and trained to effectively fill out said paperwork.
6. If you are unsure of how to promote a loaner device for optimal communication at home and in the community, consult your school professionals, as well as, your private therapists. If your private therapists are unsure or not knowledgeable in AAC (not everyone has the same training regardless of discipline), familiarize yourself with and contact professionals in your community who have experience in working with these devices. Some of these individuals may be willing to consult with you and help with programming or organizing language on the devices.
7. Use loaner devices EVERYWHERE! THIS INCLUDES AT HOME! If you do not or you openly admit that "he/she doesn't need it at home, because we understand him/her," you may kill your chance at acquiring school concurrence and a device.
8. Use the devices yourself. Play around with them, familiarize yourself with them. You cannot break them aside from dropping them, throwing them or spilling things on them! If you really have no idea how to incorporate devices into everyday life, pick small and low stress periods of time where you and your loved ones can experiment with and explore vocabulary and device functions.
9. Keep data and fill out paperwork on EVERYTHING you and your loved ones do with the device(s). Also, make and keep a copy of all paperwork for your records.
This is some advice based on years of clinical observations and experience. Make the choice to work with your school system and not fight it. The limiting issues regarding device acquisition for those still in school mostly go beyond your local school board. However, as with everything in life, there are exceptions. Do everything in your power to make you and your loved ones successful with the team of dedicated professionals you have access to. The individuals rarely call the shots, they are usually people within a much larger and heavily regulated system that they have no control over.
If you have any further questions regarding this issue, please feel free to email [email protected].
Hope you got something from this.
Thanks!
