Participatory, art-based appreciative inquiry with artists labelled/with intellectual and developmental disabilities

2021 ◽  
Vol 00 (00) ◽  
pp. 1-17
Author(s):  
Sara Miller
Keyword(s):  
Developmental Disabilities ◽  
Appreciative Inquiry ◽  
The United States ◽  
Intellectual And Developmental Disabilities ◽  
Community Based ◽  
Participatory Art ◽  
The Future ◽  
Online Methods ◽  
And Control ◽  
Community Access

People labelled/with intellectual and developmental disabilities (IDD) participate in community-based studio programming across the United States, yet their experiences and preferences for studio programming are not well known. The goal of this research was to learn what artists in a community-based studio think is important about their studio and what they want to change in the future. Using art-based appreciative inquiry and online methods, the artists were prompted to talk and create artwork about ‘what is most important’ in the studio and ‘what we want for the future’. The artists reported that the most important aspects of the studio are the staff and their friends at the studio and the opportunity to make art that is motivated by their interests. The wishes expressed by the artists included increased opportunities to be social, to make more money, to have more community access and more choice and control in the studio.

Home and Community Based Services (HCBS) Waivers: A Nationwide Study of the States

2013 ◽  
Vol 51 (1) ◽  
pp. 1-21 ◽  
Author(s):  
Mary C. Rizzolo ◽  
Carli Friedman ◽  
Amie Lulinski-Norris ◽  
David Braddock
Keyword(s):  
United States ◽  
Developmental Disabilities ◽  
Real Time ◽  
The United States ◽  
Fiscal Year ◽  
Intellectual And Developmental Disabilities ◽  
Medicaid Program ◽  
Community Based ◽  
Waiver Program ◽  
Community Based Services

Abstract In fiscal year (FY) 2009, the Medicaid program funded over 75% of all publicly funded long-term supports and services (LTSS) for individuals with intellectual and developmental disabilities (IDD) in the United States (Braddock et al., 2011). The majority of spending was attributed to the Home and Community Based Services (HCBS) Waiver program. In FY 2009, federal–state spending for the HCBS Waiver program reached over $25.1 billion and constituted almost half of total funding across the nation that year (Braddock et al., 2011). Considerable effort has been spent investigating Medicaid program expenditures, however, due in part to the unique and state-specific nature of HCBS programs, national-level analysis on the types of services offered to individuals with IDD has not been available. A full understanding of the supports available through the Medicaid program is critical as the United States considers strategies for economic recovery among competing state and federal budget priorities. This article presents the results of an analysis of 88 Medicaid HCBS Section 1915(c) waiver applications for individuals with intellectual and developmental disabilities in 41 states and the District of Columbia. It analyzes IDD data and trends close to the real time intent of states and empowers advocates in presenting timely solutions to real-time issues.

Fiscal Stewardship, Choice, and Control: The Context of Self-Directed Services for People With Intellectual and Developmental Disabilities (IDD) in the United States

2019 ◽  
Vol 57 (2) ◽  
pp. 158-171 ◽  
Author(s):  
Matthew D. Bogenschutz ◽  
Matthew DeCarlo ◽  
Jennifer Hall-Lande ◽  
Amy Hewitt
Keyword(s):  
United States ◽  
Developmental Disabilities ◽  
Cost Savings ◽  
Data Interpretation ◽  
The United States ◽  
Intellectual And Developmental Disabilities ◽  
Political Climate ◽  
Services And Supports ◽  
High Level ◽  
And Control

Abstract Self-directed home and community based services (HCBS) waiver services and supports for people with intellectual and developmental disabilities (IDD) have become a viable and widely used method of service provision in the United States. Grounded in theories of self-determination, previous literature on self-direction has suggested high satisfaction and positive outcomes for people who use self-directed programs as well as cost savings for state IDD service systems. This study explored the ways in which state IDD service administrators think about how self-direction may be used as a method of achieving cost savings while providing opportunities for people with IDD and their families to exercise choice and control. Informed by 54 high-level IDD service administrators in 34 states, and guided by a thematic analysis approach to data interpretation, the study found evidence that administrators typically see strong potential for self-direction to have cost-savings benefits, while also fostering choice. In the current political climate, the need for cautious fiscal stewardship may become a stronger driving force behind self-direction for people with IDD in the United States.

A Community-Engaged Project Discovering the Sexuality Questions of Adults With Intellectual and Developmental Disabilities

Inclusion ◽  
2021 ◽  
Vol 9 (1) ◽  
pp. 2-16
Author(s):  
Rebecca R. Kammes ◽  
Rhonda S. Black ◽  
Trisha Easley
Keyword(s):  
Developmental Disabilities ◽  
Sexuality Education ◽  
Developmentally Appropriate ◽  
Community Based Participatory Research ◽  
Research Approach ◽  
Intellectual And Developmental Disabilities ◽  
Community Based ◽  
Sexual Health Information ◽  
Education Group ◽  
Participatory Research Approach

Abstract This study used a community-based participatory research approach to examine what adults with intellectual and developmental disabilities (IDD) view as important topics in sexuality education. A thematic analysis was conducted on questions written by adults with IDD regarding sexuality after attending a sexuality education group. Results were checked for accuracy using a community focus group. Findings provide direct implications for community-based sexuality education programs for adults with IDD, demonstrating the need for mentoring regarding authentic relationship experiences as well as developmentally appropriate sexual health information. Programs need to focus on helping adults with IDD navigate these interpersonal experiences. This study also demonstrates the importance of including the voices of adults with IDD in research in order to ensure its applicability and acceptability.

Transition to Adulthood: Perspectives of Korean Immigrant Parents of Individuals With Intellectual and Developmental Disabilities

2021 ◽  
pp. 216514342110434
Author(s):  
Irang Kim ◽  
Sarah Dababnah
Keyword(s):  
Developmental Disabilities ◽  
Transition To Adulthood ◽  
Culturally Responsive ◽  
Ethnically Diverse ◽  
The United States ◽  
Immigrant Parents ◽  
Intellectual And Developmental Disabilities ◽  
Korean Immigrant ◽  
Culturally Responsive Practice ◽  
Korean Immigrant Parents

As the United States grows more racially and ethnically diverse, Koreans have become one of the largest ethnic minority populations. We conducted this qualitative study to explore the perspectives of Korean immigrant parents about their child’s future and the factors that shape those perspectives. We used modified grounded theory methods. Twenty Korean immigrant parents of children and adults with intellectual and developmental disabilities participated in the study. Four themes emerged: navigating complicated and limited service systems, maintaining safety and relationships through work and higher education, ongoing parental care at home, and the need for culturally relevant adult services. We discuss implications for culturally responsive practice and inclusive research.

In Search of Community: Lessons from Idealized Independence for Adults with Disabilities

2017 ◽  
Vol 87 (3) ◽  
pp. 380-403 ◽  
Author(s):  
Amy L. Boelé
Keyword(s):  
Developmental Disabilities ◽  
Individuals With Disabilities ◽  
Adults With Disabilities ◽  
False Dichotomy ◽  
Full Independence ◽  
And Control ◽  
Community Access

In this article, Amy Boelé presents a conceptualization of community that challenges the goal of independence as an ultimate ideal. Building on in situ tensions within independence ideologies, she illustrates the contradictions that exist when the approach to achieving community access for individuals with developmental disabilities requires full independence. Such an approach serves as a kind of assimilation to the dominant, nondisabled group's practices, which brings about contradictions that maintain oppressive forces. Using excerpts from interviews and personal recollections, she theorizes how a reconceptualization of community might empower individuals with disabilities to be contributors to their communities. She argues against considering independence as the emancipatory opposition to institutionalization. She contends that true community, as a mutual site of unconditional giving and resisted oppression, is what counters discrimination, segregation, and control, rejecting the false dichotomy of independence and institutionalism.

Self-Advocacy Services for People With Intellectual and Developmental Disabilities: A National Analysis

2017 ◽  
Vol 55 (6) ◽  
pp. 370-376 ◽  
Author(s):  
Carli Friedman
Keyword(s):  
Developmental Disabilities ◽  
Intellectual And Developmental Disabilities ◽  
Community Based ◽  
Self Advocacy ◽  
Participant Direction ◽  
National Analysis ◽  
Community Based Services

Abstract Self-advocacy plays an important role in facilitating the empowerment of people with intellectual and developmental disabilities (IDD), and helps people with IDD develop the skills necessary for the participant direction of services. The purpose of this study was to examine Medicaid Home and Community Based Services (HCBS) 1915(c) waivers across the nation to determine how states were utilizing self-advocacy services for people with IDD. Findings revealed approximately half of waivers provided self-advocacy services; however, less than .01% of waiver spending was projected for stand-alone self-advocacy services. States need to expand the provision of self-advocacy services for people with IDD in order to strengthen their ability to direct their waiver services and exercise their rights.

Employment: Renewed Investments

Inclusion ◽  
2013 ◽  
Vol 1 (1) ◽  
pp. 7-16 ◽  
Author(s):  
David M. Mank ◽  
Teresa A. Grossi
Keyword(s):  
United States ◽  
Developmental Disabilities ◽  
Supported Employment ◽  
The United States ◽  
Intellectual And Developmental Disabilities ◽  
Integrated Employment ◽  
Fair Pay

Abstract Supported employment for people with intellectual and developmental disabilities emerged in the 1980s, clearly showing the untapped potential of people to work productively in integrated jobs. Expanding across the United States and other countries, supported employment was shown to be an effective approach to employment across communities and cultures. While supported employment has expanded little in the last decade, there is a renewed investment nationwide and in some other countries. The renewed developments include improvements in supported employment methods, interest in funding based on outcomes rather than services, concern about the persistence of segregated workshops, the need for qualified supported employment personnel, investment in Employment First policies in states, the emergence of litigation promoting integrated employment over segregation, renewed investment in transition, investments in other countries, and the increasingly clear voice of self-advocates with intellectual and developmental disabilities calling for community jobs and fair pay. While there is renewed interest in supported employment, threats remain to further improvement and expansion that must also be addressed.

A Comparative Analysis of Adult Siblings' Perceptions Toward Caregiving

2015 ◽  
Vol 53 (2) ◽  
pp. 143-157 ◽  
Author(s):  
Meghan M. Burke ◽  
Thomas Fish ◽  
Kathy Lawton
Keyword(s):  
Comparative Analysis ◽  
Developmental Disabilities ◽  
Focus Groups ◽  
Service System ◽  
Intellectual And Developmental Disabilities ◽  
Adult Siblings ◽  
The Future ◽  
Brothers And Sisters

Abstract Siblings of individuals with intellectual and developmental disabilities (IDD) are likely to become caregivers for their brothers and sisters. The expectations of and experiences with caregiving, however, may be different. In this study, using focus groups, we compared the perspectives of siblings who were current caregivers (n  =  25) to siblings who anticipated being caregivers (n  =  17). Responses were compared and contrasted across four areas: caregiving responsibilities, rewards, challenges, and opinions toward being paid as a caregiver. Both caregiver groups were knowledgeable about and invested in their brothers and sisters. Also, they both reported that they enjoyed bonding with their brothers and sisters. Challenges, for current caregivers, related to understanding and navigating the service system. In contrast, anticipated caregivers were concerned about planning for the future. Mixed viewpoints were expressed about receiving pay for providing care although a greater number of current caregivers were receptive to it as a means to supporting their own families.

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