Evidence-Based Augmentative and Alternative Communication (AAC) Advocating

This article is taken from Speak for Yourself ACC, with permission.

Written by: Heidi LoStracco

“I know…it’s the middle of summer and I’m writing a post about advocating for AAC in IEP meetings.  It may not be timely for most of you but maybe it’s something you can save in your “notes” and use it when/if you need it.

Meetings are overwhelming. Hours of preparation leads to hours of professionals seated around a table surrounding the parent(s), who are often “trusting the experts” to do what’s in their child’s best interest.

If you’re an expert, that knowledge is a call to action.  It doesn’t matter whether other kids in the classroom need a support or that the district already has xyz device sitting in their closet. It has no bearing on that individual child if the school “only uses sign or PECs” (for the unspoken reason that “it’s cheap”). Truly consider what is in that individual child’s best interest and give your opinion and recommendations based on that.

If you’re a parent, it often seems like meetings focus on your child’s weaknesses, but the people spending 7 hours a day with your child should also identify concrete strengths. If they don’t or if they say something general like, “she’s such a sweetheart” or “he’s so smart,” ask for examples. Success and progress can build from strengths that your child is already demonstrating. Having information that your daughter is a sweetheart is much more valuable if it comes with examples about empathy she showed to a crying classmate or giving a cookie to an aide who said, “Those cookies look delicious!” (That means she understood an indirect request!). Knowing that your son is so smart because he wanted to tell someone about his trip to the beach so he went to a magazine, opened up to a page about the beach, and pointed to it shows his effort to interact and his problem solving abilities (and also a definite need for a consistent communication system or new vocabulary to be added to his device).  Allowing yourself to fall into a trap that “your child is so impaired and that’s why you’re not seeing progress” lowers your expectations of the professionals and also of your child. Low expectations benefit no one. You can be realistic, but also be someone who believes in your child’s ability to learn and advocate for access to his/her education and communication.

If you’re not seeing progress with your child, and you’re waiting patiently to introduce Augmentative and Alternative Communication (AAC), now is the time to be impatient. Communication touches every goal in your children’s Individualized Education Program (IEP) and every aspect of their lives.  Here are 5 suggestions based on experience and with supporting research that can be found on the American Speech-Language-Hearing Association (ASHA) website and within Wright’s Law:

1. Look critically at your child’s IEP goals. If your child has had the same goals for years because he/she “hasn’t reached a mastery level,” change the goals. IEP goals should be set so that they are achieved by the annual review. If your child is in a reevaluation year, request evaluations. We have seen parents sign papers agreeing to forgo evaluations because the child “will continue in the same program anyway.” These evaluations provide documentation and baseline levels of your child’s ability and recommendations for services and additional evaluations. There are many excellent SLPs, but unfortunately, like any field, there are some who are not as excellent. Do not agree to allow your nonverbal child to be discharged from speech services because he/she is not talking. I know it sounds ridiculous, but you would be surprised by the number of nonverbal children who are not serviced by a SLP for exactly this reason.

“IDEA (Individuals with Disabilities in Education Act) 2004 requires IEP teams to consider the assistive technology needs of all children with disabilities. (20 U.S.C. 1414(d)(3)(B)(v))

The IEP team makes decisions about assistive technology devices and services based on your child’s unique needs so that he can be more confident and independent. The law requires schools to use assistive technology devices and services “to maximize accessibility for children with disabilities.” (20 U.S.C. 1400(c)(5)(H))

If the IEP team determines that your child needs assistive technology devices and services, the school district is responsible for providing these and cannot use lack of availability or cost as an excuse.”

Here’s a link with more information, which includes the wording for Assistive Technology training. (AAC is under the umbrella of Assistive Technology).

2. If professionals who are working with your child tell you that he/she is too low functioning to communicate, ask for different therapists who will find a communication system that works for your child. If that’s not an option, take video of your child attempting to communicate with you, whether it’s through gesture, eye gaze, facial expressions, or behaviors and show the video to your child’s team. Show them where your child would have benefited from AAC. If you’re using AAC with your child at home, include that in the video. “All individuals are viewed as potential candidates for AAC, so long as there is a discrepancy between communication needs and abilities (Zangari and Kangas, 1997).”*

3. If your team is “waiting for behaviors to decrease before they introduce a communication system,” they are setting your child up to fail. Many children who are nonverbal are relying on their behaviors to communicate. They will continue to rely on behaviors until they are given a functional alternative. The earlier an AAC system is provided, the better. “Several investigators (Carr & Durand, 1985; Dropic & Reichle, 2001; McEvoy & Neilson, 2001; Mirenda, 1997; Reichle & Wacker, 1993; Robinson & Owens, 1995; Wacker, Berg, & Harding, 2002) have reported a corresponding decrease in individuals’ uses of inappropriate and challenging behaviors with a concurrent increase in more conventional, socially acceptable behaviors after AAC is introduced.”*

4. Do not wait for “prerequisite skills” before introducing high tech AAC. The auditory feedback from a voice output device is necessary for some children to succeed. Suggest (strongly) that the team target the “lacking” prerequisite skills while using a voice output AAC device. We have met many 20 year olds who were never introduced to high tech AAC because they were not able to put symbols together in their communication books to form sentences. Unfortunately, the communication books were filled with nouns and academic targets, so even the therapists couldn’t build a sentence using the communication book.“The extent to which individuals are able to use AAC to meet communication needs and demands is certainly related to the vocabulary that is accessible on their respective AAC systems (Balandin & Iacono, 1999).”*

5. Providing your child with an AAC system does NOT mean that you have given up on verbal speech. If your child is not talking, and your team is suggesting AAC, agree to try it. Some parents are afraid to try AAC because they think it will make their child “lazy” and prevent them from gaining verbal speech. For many children, AAC provides the support and feedback they need to begin talking. If your child is able to develop verbal speech, AAC will only help!
“Zangari and Kangas (1997) reviewed literature regarding the effects of AAC on subsequent uses of speech. Based on their review they concluded that the provision of AAC does not have a deleterious effect on speech development. To the contrary, AAC has been shown to facilitate speech in individuals representing a broad array of etiologies to their disabilities.”*

Keep in mind that you do not have to sign the IEP unless it adequately meets your child’s individual needs. Be nice, be friendly, say “No, thank you,” but be firm about your children’s needs. Your child’s ability to access and participate in an education is not a luxury or a favor, it is a right under the law in the United States. Advocate for their voice, until they can do it themselves.
* Quoted from ASHA’s Roles and Responsibilities of Speech-Language Pathologists With Respect to Augmentative and Alternative Communication: Technical Report

For original post please visit Speak for Yourself.

Onward!

By Guest Blogger Senator Tom Harkin (Ret.)

It is hard to believe it has been 25 years since the passage of the Americans with Disabilities Act (ADA). This nation has come a long way since the passing of this historic civil rights act. Before the ADA, I heard stories of individuals who had to crawl on their hands and knees to go up a flight of stairs at a school or a court house, who couldn’t ride a bus because there wasn’t a lift and individuals couldn’t attend a baseball game with their own family due to inaccessibility at the ball park. Millions of Americans were denied access to their own communities – and because of that they were denied access to the American dream.

I saw this denial firsthand in the life of my older brother Frank, who was deaf. He was the inspiration for my sponsoring the ADA, and for my lifelong work on disability rights. We’ve come so far as a county since passage of the ADA. However, the work is far from over. We must continue the fight for policies that will make the goals of the ADA a reality: equal opportunity, full participation, independent living and economic self-sufficiency for people with disabilities and their families.

While books, buildings, and baseball stadiums may be far more accessible to people with disabilities than they were before the passage of the ADA, one area stands as a disappointment to me: employment. We have barely seen any increase in employment of people with disabilities since 1990 despite what every survey and study says – that people with disabilities want the benefits, dignity and power of work.

But I have hope we can build a better future for those who want and can work. Over the past year we’ve seen some improvements in disability employment with almost 400,000 workers with disabilities entering the workforce in the past year. We are also seeing dedicated businesses commit to making their workplaces accessible and to hiring people with disabilities. Walgreens, Microsoft, Wells Fargo and many other companies are making great strides in hiring, retaining and promoting people with disabilities.

We have seen some good news from government, too. Five years ago, on the 20th anniversary of the passage of the ADA, the President issued an executive order with the goal to hire 100,000 new employees in the federal government over five years. That goal is very close to being met. In another executive order issued in 2014, the President raised the pay of employees on federal contracts, including those with disabilities, to $10.10 an hour. In 2013, the office responsible for all federal contracts established a goal that seven percent of the workforce of federal contractors be people with disabilities. And at the state level, in 2013, Governor Markell of Delaware made increasing disability employment the goal of the National Governors Association.

These efforts make me hopeful that we are beginning to address the challenge of un- and underemployment of people with disabilities.

Twenty-five years ago the passage of the ADA affirmed the foundation of civil rights for people with disabilities. We have been building an accessible society on that foundation for the past two and a half decades. Like any other foundation, it is what is built on top of it that is important in our daily lives. The civil rights ensured by the ADA can only be guaranteed if we are vigilant about protecting them. As we move forward into the next quarter century of the ADA, let’s all pledge to protect those rights in all parts of our lives. Onward!

About the Guest Blogger

In 1974, Tom was elected to Congress from Iowa’s Fifth Congressional District. As a young senator, Tom was tapped by Senator Ted Kennedy to craft legislation to protect the civil rights of millions of Americans with physical and mental disabilities.Tom knew firsthand about the challenges facing people with disabilities from his late brother, Frank, who was deaf from an early age. What emerged from that process would later become Tom’s signature legislative achievement – the Americans with Disabilities Act (ADA). To preserve the intent of the ADA after several court rulings weakened its standards, Tom and Senator Orrin Hatch (R-UT) introduced the ADA Amendments bill to ensure continuing protections from discrimination for all Americans with disabilities. It was signed into law in September 2008. In November 2008, Tom made history by becoming the first Iowa Democrat to win a fifth term in the U.S. Senate. Tom retired from the United States Senate in January, 2015.

Tom Harkin was born in Cumming, Iowa (pop. 150) on November 19, 1939, the son of an Iowa coal miner father and a Slovenian immigrant mother. To this day, he still lives in the house in Cumming where he was born. In 1968, Tom married Ruth Raduenz, the daughter of a farmer and a school teacher from Minnesota. Tom and Ruth have two daughters, Amy and Jenny, and three grandchildren.