As Adults With Intellectual Disabilities Live Longer, They Need More AAC Support

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Communication for adults with intellectual disabilities and complex communication disorders is a team effort. People with these disorders are living longer, higher quality, independent, and more productive lives thanks, in part, to alternative and augmentative communication technology.

Speech-language pathologists need to understand the settings in which these adults live. No longer do they live in large institutions but in more intimate and natural independent or small group homes.

A crisis may also be at hand as aging caregivers, whose adult children with intellectual disabilities and complex communication disorders live at home, can no longer care for them. According to The State of the States in Developmental Disabilities (2013), in 2011, 71.5 percent of people with these disabilities lived with family caregivers. Over the next few decades this group will flood the group home system as their parents age.

Communication is always important and critical for a person’s independence. Family caregivers may tend to speak for the adult with a disability and anticipate needs more than staff at a group home. Independent means of communication becomes that much more important once that adult moves into a new environment. This is where the SLP has a major responsibility in finding the most appropriate, functional evidence-based AAC intervention.

Many factors exist beyond the skills of the adult with intellectual disabilities and our AAC recommendations, however. Future AAC success is a team effort between the SLP, families and paid caregivers/group home staff. Some staff members are highly supportive; some are not. Informal assessment of the environment in which the affected adult lives is crucial. It can be a delicate process to help the staff member see the purpose of AAC. If the group home staff does not “buy in” to the AAC device recommendation and plan, there is a high risk of abandonment.

Group homes, although typically a better solution than nursing homes for those without complex medical conditions, have their own challenges. Moving to a group home is a major life change for people who have typically lived their whole life with their families and who often have a significant difficulty adjusting to change. In the state of Pennsylvania, where I practice, I have been encouraged to see that the group home system has placed a high level of priority on communication over the past few years. As a result, I have been seeing more adults with intellectual disabilities and complex communication disorders in my practice.

Another challenge in group homes is staff turnover. The State of the States in Developmental Disabilities (2013), reports that hourly wages for workers in community intellectual/developmental programs averaged only $10.14 per hour. A report published by the Paraprofessional Healthcare Institute in 2011 noted that almost half of direct care workers (including group home staff) live below the federal poverty level. Meanwhile, their work can be rewarding but is often psychologically and physically challenging, so it is clear why staff turnover is high. And, unfortunately, frequent staff turnover is confusing, frightening and can lead to a lower quality of life for these adults.

I have seen many adults with intellectual disabilities and complex communication disorders go years if not decades without AAC intervention. It is especially painful when, as children, they used AAC in school and transition into the adult world with no reliable means of expression because either the device was returned to school or the device had become obsolete. There is also a high level of abandonment of AAC devices once the school support is gone. In nursing homes, there can be speech therapy support available. In group homes residents must be seen for therapy as outpatients. Once the resident is back home, it becomes the responsibility of the group home staff to ensure the AAC device use is supported and maintained.

As part of the intervention plan, we must assist the group home staff to add communication goals to their mandated plan of care. We must also train the staff members in the care, maintenance and programming of the recommended device. Adults with ID are living longer, and, as technology has become an accepted part of all of our lives life, AAC interventions will continue to be a necessity. We should remember that an AAC device recommendation is not a once and done process. An adult with ID may need numerous device upgrades throughout their lives. Determining the best AAC device is not the end of the process, it is only the beginning.

Carrie Kane, a speech language pathologist at the Good Shepherd Rehabilitation Network in Allentown, Pennsylvania,  specializes in AAC assessment and treatment for adults with communication disabilities. She developed and is the coordinator of the adult outpatient AAC program in Good Shepherd’s Assistive Technology Center.