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  • NCI staff-members are working on a data brief and a webinar on what NCI data show about outcomes for adults with ID/DD who communicate non-verbally vs. the outcomes for those who communicate verbally. This blog post will give a snapshot of a selection of our interesting findings regarding the demographics of both populations.

    For the purposes of this blog, we looked at the 2011-2012 administration of the Adult Consumer Survey. The Adult Consumer Survey is a face-to-face interview with adults with ID/DD receiving state-funded services.  The total sample was comprised of adults from 29 states and 23 sub-state entities. All individuals surveyed were aged 18 and over, and receiving at least one service in addition to case management. The questions analyzed for this data brief come from the Background Information Section.

    The individual’s primary means of expression is also assessed by a question in the Background Section of the ACS. For the purposes of these analyses, only individuals for whom a primary means of expression was reported were included in the sample. This means that those respondents for whom this question was left blank or coded as “Don’t Know” were excluded from the final dataset. The final dataset includes 12,041people. For the purpose of this Data Brief, only group differences that were significant at the p<.01 level are reported.

    We found that 24% of the sample was reported to primarily communicate non-verbally. Of those who were reported to communicate non-verbally, 83% communicate primarily using gestures and/or body language, 6% communicate primarily using sign language and/or finger spelling, 4% communicate primarily using a communication aid/device and 7% reported “other” as their primary means of communication.

    Different races and ethnicities differ significantly in the percentages of respondents who communicate verbally. Specifically, 56% of respondents identified as Pacific Islander and 62% of those identified as Asian communicate verbally, while 78% of those identified as White communicate verbally.  

    Respondents who communicate verbally and those who communicate non-verbally differ significantly in prevalence of diagnosis with other, additional disabilities. For example, 38% of respondents who communicate verbally have been diagnosed with Mental Illness/Psychiatric Diagnosis, while only 21% of those who communicate non-verbally have been diagnosed as such. In addition, 40% of those who communicate non-verbally have been diagnosed with Seizure Disorder or Neurological Problem, while only 20% of those who communicate verbally have been diagnosed as such. The below chart demonstrates the percentage respondents who communicate verbally and non-verbally who have been diagnosed with other disabilities.

    Other diagnosis

    Individuals who
    communicate
    non-verbally

    Individuals who
    communicate verbally

    Mental Illness/Psychiatric Diagnosis

    21%

    38%

    Autism Spectrum Disorder

    18%

    10%

    Cerebral Palsy

    25%

    11%

    Seizure Disorder or Neurological Problem

    40%

    20%

    Limited or No Vision

    13%

    5%

    Hearing loss—severe or profound

    10%

    4%

    Down Syndrome

    8%

    11%

    Prader Willi Syndrome

    0%

    1%

    No Other Disabilities

    8%

    17%

    Respondents who communicate verbally and those who communicate non-verbally differ significantly in the amount of staff support they need. 70% of respondents who communicate non-verbally have 24-hr on site support or supervision, while 52% of those who communicate verbally have such support. Conversely, 9% of respondents who communicate non-verbally require no staff support, while 21% of respondents who communicate verbally have no staff support.

    Individuals who communicate verbally and those who communicate non-verbally differ significantly in place of residence. Those who communicate non-verbally are more likely than those who communicate verbally to live in an institutional setting or a community based residence (such as a group home or an agency operated apartment) while individuals who communicate verbally are more likely to live independently or with parents/relatives. The table below demonstrates these results.  

    Place of Residence

    Individuals who
    communicate
    non-verbally

    Individuals who
    communicate verbally

    Institution

    12%

    2%

    Community-based residence

    42%

    37%

    Independent home or apartment

    4%

    15%

    Parent’s/Relative’s Home

    31%

    35%

    Foster Care/Host Home

    6%

    6%

    Other

    5%

    5%

     

    The differences in outcomes among the populations of respondents who communicate verbally and those who communicate non-verbally demonstrated in this blog may be influenced by differences in other personal and demographic characteristics such as age, socio economic status, gender, level of disability, mobility level, etc. The potential moderating role of other demographic and personal characteristics merits further attention.

    There is very little existing research into the population of individuals who communicate non-verbally and their demographics, quality-of-life outcomes and experience in the public service systems. We hope this blog and the upcoming webinar and data brief will bring attention to the additional challenges and unique characteristics, service needs, and life circumstances experienced by individuals who communicate non-verbally.

     

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