A young adult with developmental disabilities moved into a supported living home after aging out of the public school system. He is nonverbal/nonspeaking. The new direct support staff and team did not realize the importance of his visual schedule and other visual supports. So they weren’t used. This cut off access to important communication support for this young man. He began having more and more difficulty remaining safe.
A middle-aged adult with developmental disabilities moved into a new supported living home. He is nonverbal/nonspeaking. Somehow, a referral for a communication evaluation is proposed. As far as the parent knows, her son has never had access to augmentative-alternative communication (AAC). He has never had the opportunity to learn to use AAC systems to support his communication needs. The parent states, “I never knew this was something to explore for him.”
Setting Up For Success
Communication skills evolve across the lifespan. For people with developmental disabilities, this might mean
- communication skills develop later and/or slower than their non-disabled peers
- slow and steady communication skill progression well into adulthood
- loss or decline in communication skills due to changes related to their disability or aging
- lack of access and/or opportunity to develop functional communication skills
- a communication system in desperate need of updating to meet their current needs
- a need for continued support to make sure their communication system evolves as the person and their needs change
Each year, I continue to meet nonverbal/nonspeaking adults with developmental disabilities who have no reliable means of communicating. For a variety of reasons, they aged out of the public school system with no communication system. Or they aged out with communication systems that do not meet their adult-life needs. Often, their families and teams don’t realize there are options to explore! Too often, communication is not recognized as a priority – or as something that can improve.
For AAC to be most successful, AAC users need strong, competent communication partners. Communication partners are all of the people around the AAC user. To become strong and competent, communication partners need:
- adequate training AND
- ongoing support and coaching
Systemic Barriers
A big focus of early intervention for children (birth to three years) is on caregiver coaching. Service providers teach caregivers how to boost skill development. They coach caregivers on how to support their child’s needs. The importance of the child’s family/caregivers is recognized and leveraged. The early intervention program centers around this approach.
Then the child enters the school system. Hopefully the school-based therapists focus on coaching the student’s school team. But systemic barriers make it difficult to continue ongoing coaching for the family/caregivers. This loss of direct, ongoing coaching for families/caregivers is troublesome.
Take a moment to think about how much a child changes between age 3 to 18 years old (or age 21/22 if they enter the school district’s transition program). Now think about which people will be the most consistently present across those years. And who will spend the most time with them over those years. There is SO MUCH change during the school years. The most consistently present people in the student’s life will most likely get the least amount of coaching and support. This makes it difficult for them to become (or remain) strong, competent communication partners.
Let’s pause a moment to consider private therapy. Some children receive private speech/AAC therapy in addition to what the school system might be providing. If the family is lucky, they find a speech-language pathologist (SLP) with openings that work for the family’s schedule. In ideal cases, at least one family member/caregiver can be present during the sessions to learn alongside the child. However, most third party payers (i.e. commercial insurance, Medicaid, etc.) only cover therapy that is directly with the child. Again, take a moment and consider who will spend the most time with the child. It is not the SLP.
Children grow up and become adults. When the developmentally disabled student ages out of the public school system, there is a sudden drop-off of available supports and services. This is often called the “Disability Cliff”. For example, in Washington State, Medicaid allows no more than six sessions per calendar year for speech therapy for adults. If the disabled adult is on certain state waivers, they might be able to get some support for a short period of time. But funds are limited. And often the support is provided for not nearly long enough.
Beyond the AAC Evaluation
Yes, the AAC evaluation is important. Having access to a “good-fit” communication system is critical. Having the opportunity to start learning to use AAC as early as possible (e.g., early childhood) is ideal.
It is never too late to explore AAC options. The “best-fit” AAC option may not be a high-tech speech-generating device. The “best-fit” system may have many parts. And the “best-fit” system may evolve over time! It might be identifying optimal interaction strategies. It may be slowly expanding on the ways in which the person is currently attempting to engage. It might be lite-tech tools. It likely will be a combination of tools and strategies.
Getting an AAC system established is not the end. In fact, I’d argue that it is just the beginning!
“Having a communication device doesn’t make you an effective communicator any more than having a piano makes you a musician.”
David Beukelman
1991
The AAC user has a lot to learn. And, so do all the people in their life!
A Key to Success
Communication partners are a key to AAC success. Communication partners can also be a reason that AAC can fail.
Communication partners are not usually intending to be an obstacle to the success of AAC. To be a partner instead of an obstacle, communication partners need
- knowledge
- understanding
- training
- coaching
- confidence
- supported experience
And awareness. They need to know that AAC options exist!
When I am communicating with case managers, administrators, and other team members, I often say (or include in reports):
Communication is a basic human right and develops and changes over the lifespan. One of the top reasons for AAC/communication skill failure and abandonment is insufficient consultation and coaching for an AAC user’s communication partners.
But that can only (maybe) help once the person is already receiving support.
It does not matter how old the AAC user is. During early intervention. Throughout the school years. In adulthood. The AAC user’s communication partners need support. They need MORE support. “More” includes getting support over a longer period of time. “More” includes having access to check-ins over the years as things change. But the system is not set up for communication partners to receive the support and coaching they need. (The system is not even set up for developmentally disabled adult AAC users to get the support they need.)
You Can Help!
We need to shout from the roof tops: Communication partners need a lot more training, coaching, and support!
Even better than shouting from the rooftops: Every time you have the opportunity to engage with policy makers and administrators, tell them about this gap and what is actually needed.
Share your comments or questions.