Blog Home

Category: Other (X)

  • As the holidays rapidly approach, many people think about spending time with loved ones and sharing the celebration with their communities. For this blog post, we decided to take a look at what NCI data show about community engagement and the community experiences of people receiving supports from their state DD agencies.

    According to 2016-17 Adult Consumer Survey data, 90% of respondents reported having gone shopping at least once in the community in the past month. Three-quarters (77%) reported having gone out at least once for entertainment in the past month and 86% reported having gone out to eat at least once in the past month. Less than half (45%) reported having gone to a religious or spiritual practice in the past month. The percentages of respondents who participated in these activities at least once in the past month differed by state. For example, the percentage of respondents who reported going out for entertainment at least once in the past month ranged from 56% in Maine to 88% in Washington DC.

    About three quarters of respondents (78%) reported that they were able to go out into the community and do things that they like to do as often as they want. However, this percentage also varied by state. A high percentage of 93% of respondents in KY reported being able to go out and do the things they like to do as much as they want, while in AL, 47% reported as such.

    The holidays also bring to mind the opportunity to spend time with friends and family.

    The NCI data demonstrate that 77% of respondents report having friends other than staff or family. 79% of respondents report that they can see friends as often as they want, though states range from 55% in ME to 94% in KY. Slightly above ten percent of respondents (11%) report often feeling lonely.

    As you prepare for the holiday season, we recommend reflecting on what community means to you, and how that experience can be shared with people receiving supports from the state DD agency.

    Happy Holidays!

  • The 2015-2016 Adult Consumer Survey Data indicate that 51% of participants in the Adult Consumer Survey had a partial or full guardian.

    Why does it matter?  People with guardians are not able to marry, enter into contracts, get a driver’s license, sign a lease, make purchases and exercise other choices without the approval of a guardian.  People who have guardians cannot participate fully in their own lives.

    Questions to ask: 

    • Are there alternatives to guardianship in your state?
    • Are families and individuals in your state familiar with supported decision-making?

    Want to know more?

    • Texas Guardianship law (2015) – requires exploration of alternatives to guardianship, supported decision-making and allows individuals to maintain ability to make personal decisions 
    • National Guardianship Association Revised Standards – Requires guardians to facilitate individual choices and preferences
    • American Association on Intellectual and Developmental Disabilities andThe Arc Joint Statement on Guardianship
    • Website:



  • In coordination with his previous research at the Lurie Institute at Brandeis University, NCI's newest team member, Henan Li, PhD., used NCI data in a policy brief entitled Health and Healthcare Access among Adults with Autism Spectrum Disorder and Intellectual Disability: 2015 - 2016

    The Policy Brief uses 2015-16 NCI Adult Consumer Survey data to look at health and healthcare disparities faced by adults diagnosed with Autism Spectrum Disorder (ASD). Henan's research found:

    • Adults with ASD and ID reported poorer general health than the general adult population of the United States.
    • About 29% of adults with ASD and ID reported at least one chronic health condition such as diabetes, hypertension or high cholesterol.  
    • More than half of the respondents reported at least one diagnosis of mental illness/psychiatric condition (anxiety disorders, mood disorders, schizophrenia etc.). Among those, three out of five took medication to treat those conditions. 
    • Most respondents had access to primary care doctors, annual health exams, dental care, and vision care. However, access to different types of preventive health screenings were uneven.

     Take a look at this interesting policy brief.