You have accessThe ASHA LeaderFrom My Perspective1 Jul 2015Are We Ready for Growing AAC Needs in Group Homes?As more adults with intellectual disabilities live longer and lose their parents, they need increased support with communication systems. Carrie KaneMS, CCC-SLP Carrie Kane Google Scholar More articles by this author , MS, CCC-SLP https://doi.org/10.1044/leader.FMP.20072015.5 SectionsAbout ToolsAdd to favorites ShareFacebookTwitterLinked In People with intellectual disabilities and complex communication disorders are living longer, higher-quality, independent and more productive lives. And that’s thanks, in part, to augmentative and alternative communication (AAC) systems and the services of speech-language pathologists. But beyond the skills of recommending the right AAC for this population and providing training, SLPs need to better 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. The days of state-supported institutional nursing facilities for people with developmental disabilities have slowly ended over the past few decades. It is more natural and comfortable—and more cost-effective—for these AAC users to live in the community, where they enjoy a higher quality of life. A crisis may be at hand, however, as aging parents lose the ability to care for adult children with intellectual disabilities and complex communication disorders who live at home. According to the 2013 State of the States in Developmental Disabilities report, 71.5 percent of people with these disabilities in 2011 lived with family caregivers. Over the next few decades, this population will flood the group home system as their parents age. A crisis may be at hand as aging parents lose the ability to care for adult children with intellectual disabilities and complex communication disorders who live at home. Higher-stakes AAC Communication is critical to a person’s independence. Family caregivers may tend to speak for the adult with a disability and anticipate the person’s needs more than staff at a group home. Independent means of communication, therefore, becomes that much more important when that adult moves into a new environment. In this transition, the SLP has a major responsibility in finding the most appropriate, functional, evidence-based AAC intervention. AAC intervention does not necessarily involve a high-tech speech-generating device (SGD). I use the term “communication system” to describe my AAC recommendations, because no one uses an SGD alone. A communication system is a person’s overall expressive arsenal, encompassing gestures, pointing, facial expressions, vocalizations, verbalizations, yes/no responses—and an SGD when applicable. But many other factors—beyond the skills of the adult with intellectual disabilities and our communication recommendations—affect successful AAC use. Communicative success is a team effort among the client, the SLP, families, and paid caregivers and group home staff. Some staff members are highly supportive; some are not. Informal assessment of the AAC user’s living environment is crucial. It can be a delicate process to help staff members see the purpose of a communication intervention. However, if they don’t buy in to the communication-system recommendation and plan, there is a high risk of abandonment. (Encouragingly, in my state of Pennsylvania, the group home system clearly values communication—I have seen a higher number of clients from these homes in my practice.) Challenges Though now accepted as a better solution than nursing homes for people without complex medical conditions, group homes have their own challenges. Moving to a group home is a major adjustment for people who typically have lived their entire lives with their families and who often struggle with change. Another challenge in group homes is staff turnover. Hourly wages for workers in community intellectual/developmental programs averaged $10.14 per hour, according to the 2013 State of the States in Developmental Disabilities report, and a 2011 Paraprofessional Healthcare Institute report noted that almost half of direct-care workers (including group home staff) live below the federal poverty level. The work can be rewarding, but is often psychologically and physically challenging, so staff turnover is high. Frequent turnover, unfortunately, is confusing and frightening, and can lower residents’ quality of life. 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 they used AAC in school, but transitioned into the adult world with no reliable means of expression because the device belonged to the school, was abandoned or became obsolete. And although nursing homes provide speech support onsite, group home residents must receive it as outpatients and rely on group home staff for AAC support. Our charge SLPs must be advocates, even cheerleaders, for our patients and residents. We need to help the caregivers understand how to develop and foster communication with their residents instead of just anticipating their needs. Before receiving AAC, for example, a resident may have been able to communicate only using yes/no responses, so we need to teach caregivers about the communication system’s range, access methods and time requirements (someone who scans will communicate more slowly than someone with direct-selection access, for example). We should also see that group home staff add communication goals to clients’ mandated plans of care. We can do this by modifying our documented goals to fit the group home setting with simple, straightforward, easy-to-measure goals. We must also ensure that residents’ outpatient treatment incorporates staff training on device care, maintenance and programming. Residents’ successful use of AAC is directly linked to the caregivers around them. Speech-language treatment sessions are short-term—a few months at the most. It is ultimately up to the system around the resident to carry over our recommendations and techniques. If caregivers are not educated and invested in improving the resident’s use of the device, abandonment is inevitable. If caregivers are not educated and invested in improving the resident’s use of the device, abandonment is inevitable. Adults with intellectual disabilities and complex communication needs are living longer, and communication interventions will continue to be a medical necessity. An AAC recommendation is not a one-time process, as SGD users may need many device upgrades throughout their lives. Determining their best communication system is not the end of the process—it is only the beginning. Author Notes Carrie Kane, MS, CCC-SLP, is an assistive-technology professional at the Good Shepherd Rehabilitation Network in Allentown, Pennsylvania. She is an affiliate of ASHA Special Interest Group 12, Augmentative and Alternative Communication. 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