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  • Tomorrow, December 10, is International Human Rights Day. In honor of this special occasion, we looked at the NCI data on rights from the 2013-14 data collection cycle.

    National Core Indicators provides a unique opportunity to look at public services from the perspective of service recipients. As such, NCI can be used to demonstrate how individuals with ID/DD feel about their services and their impression of how they’re treated and whether their rights are respected. State Developmental Disabilities systems can use these data in myriad ways to assess and track how policies, programs and processes may preserve or violate individuals’ rights and freedoms. In addition, with the advent of new Home and Community Based Services rules which  emphasize minimizing restrictions and increasing independence and dignity through enhanced person-centered services and supports, states have an imperative to look at whether individuals receiving services perceive that their rights are being respected in the service system.

    We are working on a data brief about rights and respect. In this blog post we highlight some of the findings from this data brief.

    The information in this blog post is drawn from the 2013-14 National Core Indicators (NCI) administration of the Adult Consumer Survey (ACS) of 16,370 adults from 31 states and one sub-state entity. For the purpose of this Data Brief, only group differences that were significant at the p<.01 level are reported.

    The Adult Consumer Survey includes questions that address indicators housed under the subdomain “Rights and Respect.” When examined in aggregate, these questions are designed to reveal how respondents feel about how their rights are valued and whether respondents feel they are treated with respect. The results of these questions will be examined below.

    An examination of the sample reveals that 89% of respondents reported that people let them know before entering their home, and 84% reported that people let them know before entering their bedroom. Ninety-one percent reported that they have enough privacy at home, and 93% reported that their staff is nice and polite to them.

    Question from ‘Rights and Respect’ domain.

    Percentage of respondents   

    N

    People let you know before entering your home

    89%

    10,866

    People let you know before entering your bedroom

    84%

    10,573

    You have enough privacy at home

    91%

    10,508

    Your staff are nice to you

    93%

    10,134

    Can be alone with visitors at home

    77%

    14,220

    Reads own mail, or others read with permission

    86%

    13,620

    Can use phone or internet whenever wants to

    90%

    12,600

    Participated in self-advocacy meetings, or had opportunity to participate in but chose not to.

    32%

    12,535

    The percentage of individuals who reported that their rights are respected varied significantly by guardianship status. Individuals under limited or full guardianship were significantly less likely than those independent of guardianship to report that people informed them when entering their home or bedroom, significantly less likely to report that they can be alone with visitors at home, significantly less likely to report that they read their own mail or others read it with permission and significantly less likely to report that they can use the phone or internet whenever they want.

     

    Percentage of respondents under limited or full guardianship

    Percentage of respondents independent of guardianship

    People let you know before entering your home

    88%

    91%

    People let you know before entering your bedroom

    82%

    85%

    Can be alone with visitors at home

    72%

    81%

    Reads own mail or others read with permission

    85%

    88%

    Can use phone or internet whenever wants to

    87%

    92%

      
    We also found that individuals who claim that certain rights are respected are significantly more likely to report that they made critical life and everyday choices. For example, as you can see from the table below, individuals who stated that they had enough privacy were significantly more likely than those who reported that they did not have enough privacy to state that they had had at least some input in choosing their home.  Similarly, individuals who stated that they read their own mail, or others read mail with permission, were significantly more likely than those who reported that they did not did not read their own mail to state that they had had at least some input in choosing their day program.

    Of those respondents who
    state that they …

    This percent had at least some input in:

    Choosing home

    Choosing day activity

    Have Enough Privacy

     

    Yes

    64%

    71%

    No

    50%

    62%

    Can be alone with visitors

    Yes

    67%

    73%

    No

    54%

    62%

    Can use phone or internet whenever wants

    Yes

    66%

    67%

    No

    53%

    54%

     Keep your eyes peeled for an upcoming data brief highlighting data on rights and respect.