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  • 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:  www.supporteddecisionmaking.org

     

     

  • 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. 

     

  •  

    The values remain the same.

    As we move into the early days of 2018 one phrase keeps coming back to mind: “The only thing constant in life is change”.

    The daily (or hourly) news brings an endless stream of information, and much of it is describing how things are changing from what they used to be. Whether you believe we are seeing change for the better or change for the worse, we can all agree we are in a time of change.

    With all this talk of change, we also remember the values that are enduring. Looking back over the past 20 years of the NCI project has affirmed the consistency of those core values that were identified by the State partners who developed this project in the mid 1990s. Those were changing times as well.

    These materials were put together to help demonstrate where we are – and to remind us of where we need to keep heading through good quality monitoring of supports and services. 

    1) We created a video to describe the history of NCI and the impact it has made on the field. The video, starring NCI team members, NASDDDS staff, surveyors and people who have taken the survey, details the policy context in which NCI made its debut, and how the uniqueness of the tool has made it a integral part of states' quality management. Watch it here.

    2) Valerie Bradley, President Emerita of HSRI and one of the founders of NCI, wrote a monograph to commemorate the 20th anniversary of NCI. The report details the history of NCI, how it's evolved over the years and how the data are being used. Take a look here

    3) Val also presented at the NASDDDS conference in November, 2018. In the presentation, Val detailed the importance of NCI throughtout the past 20 years, and discussed how some of the data have changed. See the powerpoint here

    What has NCI meant to you? Please let us know at dhiersteiner@hsri.org

    and HAPPY NEW YEAR!