Redefining AAC as a Standard of Care
Only a small percentage of people with complex communication needs get the AAC support they need. Though AAC is becoming more widely accepted, the huge gap between the people who need AAC and those who get adequate AAC support is longstanding and pervasive across service delivery standards. There are many fine people who work tirelessly to make changes to this unfortunate reality, and we are deeply grateful for their work. They are exhausted, hard-working, frustrated, and represent various stakeholder groups.
Still, there are far too many professionals who fail to provide AAC support to those they work with who need to use other means of communication. How can we change their perspective in ways that will steer them in the direction of providing AAC support?
How we talk and write about AAC matters. It’s only a small piece of this challenging conundrum, but one that, nonetheless, can contribute to systems change over time.
We propose talking about AAC as a standard of care.
Standard of care is a legal term with a very specific meaning. It refers to “the watchfulness, attention, caution, and prudence that a reasonable person in those circumstances would exercise. If a person’s actions do not meet this standard of care, then their acts fail to meet the duty of care which all people (supposedly) have toward others.”
While the medical model of disability is not the best fit for most situations in which AAC could or should be provided, it is ubiquitous here in the US, and, as such, plays a role in this discussion. The National Institutes of Health defines standard of care as “treatment that is accepted by medical experts as a proper treatment for a certain type of disease and that is widely used by healthcare professionals.” They note that this is also called best practice, standard medical care, and standard therapy.
In education, it refers to “the level and type of care that a reasonably competent and skilled professional, with a similar background and in the same setting, would have provided under the circumstances The standard of care is measured by the judgment, knowledge, experience, training, perception of risk, and skill that a person in the capacity of a professional would have.”
There are some situations, such as an individual who has completely lost their speech abilities due to disease, when the role of AAC is so blatant and critical that few would argue against it being a standard of care. Most situations, though, are less clear-cut.
- What about people with some residual speech?
- How about those who failed to develop spoken language in early childhood?
- Would it include those who speak easily and well under some circumstances but find that their speech is inaccessible in some situations?
- Should it include people who can speak but do not, due to selective mutism or severe anxiety?
Let’s open up a discussion on when and for whom AAC is a standard of care. As a field, AAC has always been driven from the bottom up. The AAC community is a creative, determined, and powerful one. Let’s do this.
Do you have thoughts on this matter? We’d love to hear from you.
Quotes were retrieved from the following websites.
Filed under: Featured Posts, PrAACtical Thinking
This post was written by Carole Zangari
Great thought provoking thought. Can I suggest that something that needs to be done, is to ensure that a definition of AAC is always used to gain shared meaning. The term is ambiguous: many people claim to include all means of communication (including an individual’s existing non-symoblic communication), but perhaps then only talk about symbolic systems given to people, and some people think AAC is only the symbolic systems given to people. The heavy focus of expressive means of communication overshadows the need for communication to be modified sometimes to fit with an individuals comprehension. Would we be better off to ditch the ambiguous term and just to about Communication as a Standard of Care, that allows the valuing of existing means, or do we need to work towards a better shared meaning of what the term AAC refers to? You point to individuals who are in the less clear-cut situation… does “AAC community” unintentional create a barrier when people are in the less clear-cut, when if we talked about say Total Communication or multimodal communication, or just communication, we could operate in a space of communication support for whoever needs it, not defined by the use of a device…
Comprehensive AAC services and ongoing support should be as standard of care for those who are unable to effectively communicate verbally but have communicative intent. In order for this to happen, we need to educate the wider community.
I have worked for many years in the field of AAC and would like to share the following thoughts:
1) AAC users need to be flagged as such by school nurses, primary care providers and other medical professionals. They should routinely be scheduled for extended appointment time (say, 30 minutes rather than 15 minutes) in order for them to be heard as they discuss symptoms and treatments.
2) Medical professionals should receive basic orientation to AAC issues and etiquette. Most, with good intentions, use family members and caregivers as interpreters. There are classes in communication for medical students. It would be easy to have as guest speakers individuals who use AAC devices, parents and SLPs.
3) SLPs working with adults experiencing disabilities, including those in extended care facilities, should be provided with information re: AAC options which they can share with employers and contract agencies.
4) Outreach should be provided to other public agencies (libraries, police departments, court staff) on the importance of AAC and on ways to support AAC users in their settings. (This may start with finding out if a device is available or if low tech strategies are used by an individual.)
5) Families need to be empowered to manage AAC support at home and should be key decision makers. Issues such as cultural considerations and bilingualism are crucial.Too often, families do not feel respected and included in shaping AAC intervention.They are the people who will need to provide ongoing support as individuals using AAC enter adulthood.