Parents' Corner
April 2009
Defining Our Terms:
Perspectives on AAC Fundingby Robin Hurd
“Tell me the first thing that comes to your mind when I mention funding issues in AAC.”
“Duh”, you might say, “getting insurance to pay for the SGD (speech generating device)!”
That answer would be typical for a family member or a person who needs an AAC device. But, amazingly enough, it may not be the first thing that pops into the heads of everyone who is involved in the world of AAC.
So this month, we’ll take a moment to discuss consumer perspectives on AAC funding in our terms.
From time to time, it’s important to use the Parent’s Corner as a place where the perspective of the family and consumer stakeholders in AAC can be clearly explained, so that our passions are not misunderstood. All of us are aware of the differences between views among the various groups of people who are involved in AAC so we can find common ground.
The field of AAC as we know it today involves speech language pathologists (SLPs), occupational therapists, assistive technology specialists, rehabilitation engineers and programmers who design the equipment; but it could not exist without the efforts and advocacy of family members and consumers—the people who use AAC.
Recent events within professional organizations have brought to my attention the need for us to clearly define what families and consumers mean when we talk of funding concerns. Discussions within professional organizations are very different than those that take place when families and consumers get together. In order to be better advocates for change within AAC, we need to clearly understand where the professionals’ priorities are, and they need to clearly understand ours.
When professional organizations have meetings to discuss funding, it is quite possible for them to never even mention the fact that many of us are having significant struggles to get insurance funding for the devices that are being recommended during an AAC evaluation. The first thing that seems to pop into the professionals’ heads when funding issues in AAC are brought up is that the billable hours for an AAC eval (the amount an insurance company will pay them for doing the eval) is not enough to cover the amount of work they need to do. Discussions that surround funding at professional organizations rarely include discussion of what is first in the minds of families and consumers: getting the device into the hands of the person who needs it. It is understandable that people who make their living from AAC would want to get paid for what they do. However, it is disheartening that keeping the “needs of the client who uses AAC paramount” (1. ASHA code of ethics) doesn’t enter into the discussion of funding.
In contrast, whenever I ask families or consumers about AAC funding issues, I get stories of their own personal struggles to get an AAC system funded, horror stories about unethical practices (sometimes outright lies) on the part of the insurance companies, and fear that even if this device was eventually funded, the next time around, they won’t be so lucky. It’s not that families and consumers are heartless and want the SLPs who do AAC to do the work for free. It’s that actually getting the device is the most important thing to us! A professional may consider that her job is done when she/he mails the AAC evaluation to the insurance company. From the consumer perspective, however, the AAC eval. isn’t successful until the person who needs it actually has what was recommended in the eval.
Knowing that there is such a big chasm between how the professionals think about funding issues and how consumers and families think about AAC is important. It’s important that professionals and the organizations that serve them understand that families are frustrated and continue to get more frustrated as the work of getting an AAC system funded through insurance becomes more and more difficult. Professional organizations that focus their efforts on increasing what their members are paid for doing an AAC eval. alone, without considering the need for devices themselves to be regularly funded through insurance, are shooting themselves in the foot. The way the current systems works, families and consumers need SLPs to conduct an eval. in order for us to get devices funded. However, if devices are no longer funded via insurance and/or professionals are unwilling to help out with that phase of the process, eventually families begin to ask themselves, “Why bother with an SLP at all?”
Several families have gotten their children AAC systems outside of the “normal” process, and are seeing good outcomes for their children who use AAC in spite of the lack of involvement of an SLP. The growing availability of information via the internet makes getting the needed information more and more possible for families. The dirty little secret of AAC is that families are often driving the process. Without the efforts of families, many children who need AAC would not have access to the devices or be taught to use them effectively. While some SLPs are knowledgeable in AAC and are a credit to their profession, too many know nothing about AAC, yet continue to attempt to provide guidance to children and the schools that teach them, to the detriment of the children they are supposed to serve.
An educated and empowered consumer base should not be a threat to professional organizations. Rather professionals should be challenged to rise to the occasion, to stand by the flowery words they have penned to describe their intended relationship to their clients. They should be challenged to become that group of knowledgeable professionals who understand and respect the needs and values of the clients and families they serve. They should be challenged to renew their commitment to their professional values.
I feel that I speak for all consumers and families when I say that we don’t want to be “junior members’” of the AAC community. We wish to be full partners, knowledgeable and passionate directors of the path down which the field of AAC will travel in the upcoming years. Not only do we wish to do this, we fully intend to—with or without the partnership of professionals in the field. To quote the late Colin Portnuff, “ SLPs visit (the world of AAC). We live here”.
I am pained by the difficulties family and consumer advocates have had recently in convincing organizations of the importance of considering the consumer perspective in AAC funding: that people are simply not being able to get AAC systems funded by insurance without a long and difficult struggle. Working together to affect change is always the best pathway. However, if it is impossible to partner with organizations who ought to be on the forefront of advocacy, consumers and families will continue to push for needed reforms without them: we have too much at stake not to.
The AAC Institute will continue to advocate from the perspective of the consumers and families who rely on AAC. We are gathering stories of families’ funding problems and will soon be posting some information on the web site about insurance companies and their strategies to avoid funding devices. Please, share your story by sending a message to Robin Hurd at parents@aacinstitute.org.
1. http://www.asha.org/docs/html/ET2003-00166.html#sec1.1
As always, feel free to e-mail me at parents@aacinstitute.org with any questions or comments.
NEW!
AAC ConsumerNet ----- Check it out!http://www.aacinstitute.org/AACConsumerNet
Your feedback is always valued. parents@aacinstitute.org.
