| NSF Org: |
SES Divn Of Social and Economic Sciences |
| Recipient: |
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| Initial Amendment Date: | March 14, 2018 |
| Latest Amendment Date: | March 14, 2018 |
| Award Number: | 1802591 |
| Award Instrument: | Standard Grant |
| Program Manager: |
Joseph Whitmeyer
jwhitmey@nsf.gov (703)292-7808 SES Divn Of Social and Economic Sciences SBE Direct For Social, Behav & Economic Scie |
| Start Date: | April 1, 2018 |
| End Date: | March 31, 2021 (Estimated) |
| Total Intended Award Amount: | $11,952.00 |
| Total Awarded Amount to Date: | $11,952.00 |
| Funds Obligated to Date: |
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| History of Investigator: |
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| Recipient Sponsored Research Office: |
615 W 131ST ST NEW YORK NY US 10027-7922 (212)854-6851 |
| Sponsor Congressional District: |
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| Primary Place of Performance: |
NY US 10027-5703 |
| Primary Place of Performance Congressional District: |
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| Unique Entity Identifier (UEI): |
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| Parent UEI: |
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| NSF Program(s): | Sociology |
| Primary Program Source: |
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| Program Reference Code(s): |
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| Program Element Code(s): |
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| Award Agency Code: | 4900 |
| Fund Agency Code: | 4900 |
| Assistance Listing Number(s): | 47.075 |
ABSTRACT
Recent reforms in services for people with Intellectual and Developmental Disabilities (ID/DD) have been oriented toward increasing the individual's opportunity for autonomy and a normal life in the community. However, adults with ID/DD show poor outcomes on almost all indicators of successful adulthood. This project examines the influence of the tension between the need for care and encouragement of autonomy on the adult lives of people with ID/DD. More specifically, this study investigates disabled adulthood as a collection of care arrangements--created by significant others, programs, and government support--that shapes the opportunities for autonomy. This research has three goals: to assess the design of a novel independent living program for high functioning adults with ID/DD, to contribute to the literature on the ethics of care, and to situate the regulations governing state and federal funding for disability in the context of the daily life of adults with ID/DD. Findings from this study have the potential for broader impacts through influence on government policy concerning care and directly on caregiving for adults with ID/DD.
This project will use ethnographic research, interviews, and qualitative analysis of government regulations and assessment tools to investigate disabled adulthood as a set of arrangements balancing care and autonomy. On the micro level, this study will describe the process of negotiating the relationship between care and autonomy for adults, family members, and staff at an independent living program. On the program level, this study will assess the program design and operation of a novel type of independent living program, one that provides as-needed care to individuals with ID/DD who live in their own apartments. On the institutional level, this study will investigate the influence of government regulations for entitlement programs like Medicaid, SSI/SSDI, and food stamps on the adult lives of people with ID/DD, including their ability to make autonomous decisions and to engage in adult behaviors like employment, marriage, and the activities of daily life.
This award reflects NSF's statutory mission and has been deemed worthy of support through evaluation using the Foundation's intellectual merit and broader impacts review criteria.
PUBLICATIONS PRODUCED AS A RESULT OF THIS RESEARCH
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PROJECT OUTCOMES REPORT
Disclaimer
This Project Outcomes Report for the General Public is displayed verbatim as submitted by the Principal Investigator (PI) for this award. Any opinions, findings, and conclusions or recommendations expressed in this Report are those of the PI and do not necessarily reflect the views of the National Science Foundation; NSF has not approved or endorsed its content.
This project, Doctoral Dissertation Research: The Autonomy of Adults with Developmental Disabilities, funded 18 months of ethnographic observation at an independent living program for adults with intellectual and developmental disabilities which I call Moving Toward Independence in the Community (MTIC). This included 30 staff meetings, 20 Medicaid Individualized Service Plan meetings, and 109 meetings between adult participants and staff. The Co-PI, Adrianna Munson, also attended over 50 program activities from trivia night at a local bar, a knitting class which she taught, work internships, and a weekend trip to Williamsburg Virginia. In addition, Munson completed 38 interviews with participants? parents and siblings.
These observations and interviews provide a fuller picture of community support for people high functioning developmental disabilities, an under researched population. A major finding is that autonomy is an ongoing, daily project to become more independent rather than a permanent accomplishment. By framing autonomy as an ongoing project, adult participants at MTIC are considered to be autonomous when they make measured progress toward independent living goals even if they remain dependent in other areas of their lives.
This research has resulted in three published papers and two working papers to date:
- Munson, Adrianna Bagnall. 2020. ?Framing Life as Work: Navigating Dependence and Autonomy in Independent Living.? Qualitative Sociology 43(1):89?109. doi: 10.1007/s11133-019-09438-8.
- Altomonte, Guillermina, and Adrianna Bagnall Munson. 2021. ?Autonomy on the Horizon: Comparing Institutional Approaches to Disability and Elder Care.? Theory and Society. doi: 10.1007/s11186-021-09434-4.
- Munson, Adrianna Bagnall. ?How to Become an Adult.? Contexts, Summer 2021.
- Munson, Adrianna. "What a Mediminder Does: Arranging Autonomy Through Technology." Working Paper.
- Munson, Adrianna. ?Adulthood as a Cultural Process: Teaching Skills, Training Dispositions.? Working Paper.
With the goal of communicating with a larger audience, including people with intellectual disabilities who may find academic publications to be inaccessible, Munson worked with an artist to create a series of graphic illustrations of her findings. A sample of these illustrations are included here.
Last Modified: 07/30/2021
Modified by: Adrianna M Munson
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At care planning meetings, or Individualized Support Planning (ISP) meetings, participants often become uncomfortable with the tensions between their right to independence and the expectation that they will behave ?like adults? by submitting to the efforts of staff to train them.Sam WedelichCopyrightedAdrianna M MunsonThe ISP -
While MTIC?s participants often need support to complete daily tasks like cleaning and cooking, they are still considered successful adults as long as they internalize the social expectation that adults will be responsible and independent.Sam WedelichCopyrightedAdrianna M MunsonMaking the Bed -
Adulthood is a catch-22: it is defined by one?s independence from others and yet, to be considered an adult, you are obligated to perform the duties of adulthood. For many participants at MTIC, this feels like work or ?a job.?Sam WedelichCopyrightedAdrianna M MunsonLifework
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