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Renata Ticha

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I am a researcher at the University of Minnesota's Institute on Community Intervention focused on developing and evaluating assessments and interventions for children, youth and adults with disabilities. I conduct my work both nationally and internationally.

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University of California, Santa Barbara

Antioch University

University of British Columbia

Kansas State University

The University of New South Wales

Armando Marques-Guedes

UNL - New University of Lisbon

Enayat A. Shabani

Tehran University of Medical Sciences

Hülya Kelecioğlu

Hacettepe University

Patrick Blessinger

St. John's University

Anne Corinne Huggins-Manley, Ph.D.

University of Florida

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Papers by Renata Ticha

Incentives, Wages, and Retention Among Direct Support Professionals: National Core Indicators Staff Stability Survey

Intellectual and Developmental Disabilities, Mar 17, 2022

Direct support professionals (DSPs) provide a range of supports in a variety of settings to peopl... more Direct support professionals (DSPs) provide a range of supports in a variety of settings to people with intellectual and developmental disabilities (IDD) who count on these supports to live, work, and contribute in their communities. Despite this, high annual DSP turnover rates are problematic. DSP turnover is disruptive to people who receive supports as the lack of stable, reliable supports can negatively impact their important day-today outcomes (e.g., safety, community participation, and choice). Turnover also comes at a cost to provider organization in the hiring and training of new employees. To retain DSPs, organizations offer incentives (e.g., bonuses, retirement plans, health insurance). This study utilized National Core Indicators® (NCI®) Staff Stability Survey 2018 data to examine the relationships between wages, different types of incentives, including benefits (e.g., paid time off, access to health insurance, disability insurance, wage bonuses, health incentives programs, etc.) to annual turnover in participating states in the US. Results indicated that incentives were not positively associated with DSPs retention. Staff wages were the most notable factor associated with differences in DSP retention rates, along with the state in which the organization was located as well organization vacancy rates.

Comparing observational software with paper and pencil for time-sampled data: A field test of Interval Manager (INTMAN)

Behavior Research Methods, Feb 1, 2006

INTMAN is an observational software system used for time-sampled data in behavioral research proj... more INTMAN is an observational software system used for time-sampled data in behavioral research projects that rely on direct observation. Traditional methods of collecting this type of data have normally relied on using paper-andpencil methods. In the past 15 years, computer-assisted direct observation programs have become widely available and readily accessible with increasingly affordable hardware options (Thompson, Felce, & Symons, 2000) applied in a wide range of educational settings (Greenwood, Carta, & Dawson, 2000) and community-based settings (Felce & Emerson, 2000). Despite claims suggesting or implying that computer-assisted data collection is superior to traditional methods, to date there is a very limited number of studies that empirically compare the two methods of data collection in general or specific to time-sampling procedures on dimensions relevant to research considerations including efficiency, accuracy, and cost. White, King, and Duncan (2002) compared a traditional data collection method in the form of paper and pencil with voice recognition technology (VRT) in a study of social interaction and singing in cowbirds. The time for data input and interobserver agreement were contrasted, and overall results showed that the VRT method was more time efficient and led to significantly more accurate interobserver agreement. Saudargas and Zanolli (1990) and Klesges, Woolfrey, and Vollmer (1985) contrasted traditional and computer-assisted methods to assess the accuracy of momentary time sampling against real-time data collection but did not focus on the advantages and disadvantages of the methods themselves along a broader set of dimensions relevant to the decisions a researcher would need to make in choosing between traditional and computer-assisted methods. The purpose of this article is twofold. The first is to introduce and describe the Interval Manager (INTMAN) software system designed to facilitate time-sampled data collection. The second is to report the results of a preliminary study that directly compared INTMAN with a traditional paper-and-pencil time-sampled data collection system along five dimensions including setup time, duration of data entry, duration of interobserver agreement calculations based on Cohen's kappa, accuracy, and cost. INTMAN: System Description and Program Operation The INTMAN software system was designed to facilitate the collection of time-sampled data in field-based settings. INTMAN has a collection component and an analysis component. The collection component runs on Pocket 165

Community participation and staying home if you want: US adults with intellectual and developmental disabilities

JARID, 2022

Background: Requiring adults with intellectual and developmental disabilities to go on community ... more Background: Requiring adults with intellectual and developmental disabilities to go on community outings with co-residents and staff is contrary to community-living policy's focus on person centredness and choice of activities/companions. Method: We analysed 2018-19 National Core Indicators data from 36 US states concerning 7968 adults living in staffed, non-family, multi-client settings. The focus outcome was being able to stay home if you want when others in your home go out. Results: The 42.0% of participants who could stay home were more likely to go out with friends, family or alone, and less likely to go out with staff. Those who could stay home participated in a similar variety of community activities and went out more often to shop or for errands. Conclusions: Individuals who could stay home likely had more choice about where, when and with whom they went out. Strategies for greater person-centredness are proposed.

Current services and outcomes of formerly institutionalised and never-institutionalised US adults with intellectual and developmental disabilities: A propensity score matching analysis

JARID, 2023

Background: Deinstitutionalization research shows better services and outcomes relative to instit... more Background: Deinstitutionalization research shows better services and outcomes relative to institutional life but has not compared formerly institutionalised and neverinstitutionalised service users. Methods: We used propensity score matching (PSM) to match formerly institutionalised and never-institutionalised participants on six personal characteristics. Data came from the 2018 to 2019 National Core Indicators In-Person Survey. We excluded current institution residents, and states with 25% + of missing data on former institutionalisation. Results: Overall, 15.5% of participants in the 29-state full sample had lived in an institution for 1 year or more. Findings from the PSM sample showed that formerinstitution residents were more likely to use congregate living arrangements and less likely to live with family. They experienced more loneliness, less support-related choice, and had a consistent pattern of disability service-focused social connections. Conclusions: Many former institution residents remain disadvantaged relative to matched peers. There is a need to identify factors to enhance services and outcomes following deinstitutionalization.

Choices, Preferences, and Disability: A View from Central and Eastern Europe

Springer eBooks, 2020

In this chapter, the authors discuss how people with disabilities have expressed preferences and ... more In this chapter, the authors discuss how people with disabilities have expressed preferences and made choices in the context of growing up and living in Central and Eastern Europe. It is argued that the historical, cultural, and political context or macrosystems of the post-Soviet region have influenced choice making and self-determination of people living in the Czech Republic and Ukraine. A case is made for a fundamental difference in the development of self-determination in the post-Soviet region, in comparison to Western societies, that has manifested itself in the disempowerment of the individual and empowerment of the macrosystem. Choices people with disabilities make on daily basis as well as those about their lives are described in the context of the ecological model, and we argue that the relationship between macrosystems and people with disabilities and their families within societies has been decidedly understudied. In addition to making more general observations and comparisons relevant to people with disabilities living in Central and Eastern Europe vs. in Western countries, cases of the Czech Republic and Ukraine are illustrated in more detail. This chapter concludes by providing recommendations on how to enhance choice making for people with disabilities through social capital and advocacy regardless of where they live.

Association of state-level and individual-level factors with choice making of individuals with intellectual and developmental disabilities

Research in Developmental Disabilities, Dec 1, 2018

Background: State-level factors have not been examined in research on choice, despite findings of... more Background: State-level factors have not been examined in research on choice, despite findings of between-state differences. Aims: To examine both individual and state-level factors associated with choice. Methods and procedures: We used multilevel modeling to explore two choice scales, support-related and everyday choice, based on the National Core Indicators (NCI) data from 2013-14. Outcomes and Results: At the individual level, milder ID, greater mobility, fewer problem behaviors, answering questions independently, communicating verbally, and living in a non-agency setting, particularly independent settings, were associated with more choice for both scales. State-level factors overall explained variance for both scales, but were more strongly associated with support-related choice. A higher proportion of people with IDD living independently within the state predicted more support-related choice. High cost of living within a state predicted less everyday choice. Higher proportion of people living with family and lower proportion being served within a state predicted more everyday choice. Conclusions and implications: These findings suggest further study of choice in relation to policies that: (1) increase independent living for individuals with IDD, and (2) assist individuals/families living in high cost states. State differences on important QOL outcomes are likely to be associated with economic and system-based factorsbeyond individual differences. What this paper adds? Comparisons among US states have the potential to begin to identify how state policy, funding and contextual factors are related to outcomes for people with IDD, thereby providing evidence on how these factors might be changed to achieve better outcomes. This paper is an important addition as it examines the relationship between state-level factors and choice by people with IDD. These factors include features of the state IDD service-system, such as the proportion of IDD service users within a state living independently. Such factors are within the control of state IDD administrators and so are potentially modifiable. This paper uses a new statistical approach in this field, multilevel modeling, to explore these state-level contextual factors on the outcome of choice for individuals with IDD. Compared to previous studies that found living in different states significantly affected both an everyday and support-related choice for people with IDD receiving services, this paper was able identify specific state-level factors that contribute

Participation and Companions for Socially Inclusive Community Activities by U.S. Adults With Intellectual and Developmental Disabilities

PubMed, Aug 1, 2023

We investigated socially inclusive participation in mainstream community groups and religious ser... more We investigated socially inclusive participation in mainstream community groups and religious services by U.S. adults with intellectual and developmental disabilities using weighted secondary analyses of 2018-2019 National Core Indicators data. Overall, 34.4% participated in community groups and 42.4% in religious services. Some 45.0% had an unmet desire for community-group participation, whereas most (75.0%) attended a religious service as often as preferred. The type of companion varied by living arrangements and age group. Attending community groups and religious services were each strongly associated with better friendship outcomes but were not related to loneliness. The large unmet demand for community-group participation reveals a major gap. The friendship outcomes underline the benefits of socially inclusive community participation.

Mothers and fathers with intellectual and developmental disabilities who use US disability services: prevalence and living arrangements

Journal of Intellectual Disability Research, Dec 23, 2021

BackgroundLittle information is available on the prevalence of mothers and fathers with intellect... more BackgroundLittle information is available on the prevalence of mothers and fathers with intellectual and developmental disabilities among US disability‐service users. Child removal is a key issue for these parents.MethodsWe analysed 2018–19 National Core Indicators data from 35 states on US adults with intellectual and developmental disabilities being a parent. For parents of a child under 18, we examined whether the child lived with them.ResultsPrevalence of parenthood was 3.7% (6.0% women, 2.1% men). Among parents of a child under 18, 44.0% had their child living with them. Being a mother, being married and living with family were positively associated with child co‐residence. Parents with co‐resident children mainly lived in their own home (59.7%) or their family's home (32.3%).ConclusionsOur prevalence estimate suggests a national total of 33 794 US parents who use intellectual and developmental disabilities services. For parents living with their child, a critical task for disability services is to enable parents and children to live in a family setting.

Responsiveness to Self-Report Interview Questions by Adults With Intellectual and Developmental Disability

Intellectual and Developmental Disabilities, Jun 1, 2015

An important line of research involves asking people with intellectual and developmental disabili... more An important line of research involves asking people with intellectual and developmental disability (IDD) to self-report their experiences and opinions. We analyzed the responsiveness of 11,391 adult users of IDD services to interview questions from Section 1 of the 2008-2009 National Core Indicators-Adult Consumer Survey (NCI-ACS). Proxy responses were not allowed for the selected questions. Overall, 62.1% of participants answered the questions and were rated by interviewers as understanding the questions and as responding consistently. Most participants responded in an all-or-none fashion, answering either all or most questions or few to none. Individuals with milder levels of IDD and with speech as their primary means of expression were more likely to answer the questions and provide a scoreable response. Interviewer ratings of interviewees&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39; answering questions, understanding of questions, and consistent responding were each related to responsiveness.

Leisure Participation of Autistic Adults: An Ecological Momentary Assessment Feasibility Study

American journal on intellectual and developmental disabilities, Jul 1, 2023

Autistic adults participate less and express lower satisfaction in leisure activities than nonaut... more Autistic adults participate less and express lower satisfaction in leisure activities than nonautistic adults, although literature is limited. The multifaceted nature of leisure participation makes it challenging to measure, with most measures being retrospective. Ecological momentary assessments (EMA) can reduce recall bias. This pilot study assessed the feasibility and acceptability of EMA among autistic adults. Participants (N = 40) were recruited via email and online. After completing a baseline interview, participants were asked to complete a once-daily survey for 30 days, in which they received survey links through a text messaging smartphone app. Surveys asked participants to report whether they participated in any leisure activities during the day, their level of enjoyment, with whom they interacted, and where they participated. The EMA appeared feasible in this sample, as participants completed the daily survey on average 27.05 (SD = 3.92) days. Regarding acceptability, most agreed that survey timing was convenient, that it was easy to enter responses and answer questions daily, and that they had enough response time. Overall, this study supports the use of EMA methodology among autistic adults. Future research should follow and improve upon these EMA data collection practices to examine daily behavior and well-being among autistic adults.

Examining the National Core Indicators' Potential to Monitor Rights of People With Intellectual and Developmental Disabilities According to the CRPD

Journal of Policy and Practice in Intellectual Disabilities, Sep 10, 2019

The Convention on the Rights of Persons with Disabilities (CRPD) aims to change attitudes and pol... more The Convention on the Rights of Persons with Disabilities (CRPD) aims to change attitudes and policies toward individuals with disabilities worldwide and to foster the inclusion and independence of persons with disabilities in society. The current study was designed to assess empirically the extent to which people with intellectual and developmental disabilities (IDD) exercise certain rights in the United States using the National Core Indicators Adult Consumer Survey (NCI-ACS), particularly to see if items could be scaled to measure certain CRPD articles reliably. An additional aim was to assess the impact of guardianship on the rights of individuals with IDD. NCI-ACS data were analyzed employing factor analysis, multiple analysis of variance, and regression modeling. These approaches allowed us to assess the relationship between guardianship and rights controlling for known covariates (such as level of ID) on outcomes. Results indicate that the NCI-ACS contains several items with sound psychometric properties that can assist in measuring certain rights of people with disabilities according to CRPD. Specifically, employment and budgetary agency appear to be areas of rights outlined by the CRPD that the NCI-ACS can help measure. Finally, the results indicated that people who have an appointed legal guardian are less likely to be employed and to have less social privacy. This study indicates the NCI-ACS has the potential to measure access to CRPD rights, such as employment and budgetary agency, by people with IDD. More work is needed to evaluate additional promising measures of a wider range of CRPD articles. Alternatives to guardianship need to be examined in order to increase the opportunities for people with IDD to exercise their rights.

Community employment, facility-based work, and day activities for working age people with intellectual and developmental disability

Journal of Vocational Rehabilitation, Jun 15, 2022

BACKGROUND: Individuals with Intellectual and Developmental Disability (IDD) participate in a var... more BACKGROUND: Individuals with Intellectual and Developmental Disability (IDD) participate in a variety of day/employment activities including community-based activities and work and facility-based activities and work. These different activities have important implications for community inclusion and economic independence. OBJECTIVE: The purpose of this study is to use the National Core Indicators-In person Survey (NCI-IPS) to explore the prevalence of day/employment activities for adult service users with IDD and to determine what personal and environmental factors are related to each type of activity. METHODS: The data analyzed in this study come from the 2018-19 National Core Indicators (NCI), a survey of adult services users with IDD in the U.S. We used descriptive statistics and multinominal logistic regression to explore how the various covariates differentially relate to the four day/employment activity types. RESULTS: A variety of personal and environmental characteristics were associated with each type of activity. Characteristics related to equity (e.g., race and gender) and support needs (e.g., mental health) were associated with less community-based work. CONCLUSIONS: This study was the first, to our knowledge, to describe the complexity of day/employment activities individuals with IDD experience in terms of prevalence and overlap. Further, this study provides evidence that certain profiles are leading to different experiences and that services do impact service users employment opportunities.

Contextual Factors Associated with Implementing Active Support in Community Group Homes in the United States: A Qualitative Investigation

Journal of Policy and Practice in Intellectual Disabilities, Nov 22, 2017

Although numerous studies in the U.K. and Australia have shown that Active Support (AS) is an eff... more Although numerous studies in the U.K. and Australia have shown that Active Support (AS) is an effective intervention in increasing staff assistance and engagement for people with intellectual and developmental disabilities (IDD) who live in small community residential settings, studies in Taiwan and the U.S. did not replicate these results. The mixed findings may be due to the unique challenges faced by small community group homes serving people with disabilities from different countries. The purpose of this qualitative study was to describe the views of participants in a AS implementation study about contextual factors that affected their efforts at implementing AS in a U.S. context. Interviews were conducted with Direct Support Professionals (DSPs) and AS trainers. A focus group was conducted with directors from organizations that implemented AS in the U.S. This study revealed several reported challenges to AS implementation, including the lack of leadership support, lack of buy-in, and high staff turnover rate. Despite these difficulties, study participants identified positive impacts of AS on both DSPs and people with disabilities. Implications of these findings are discussed.

Extending Curriculum-Based Measurement to Assess Performance of Students with Significant Cognitive Disabilities

University of Minnesota Press eBooks, Sep 1, 2012

Community participation and staying home if you want: <scp>US</scp> adults with intellectual and developmental disabilities

Mental Handicap Research, Jun 5, 2022

BackgroundRequiring adults with intellectual and developmental disabilities to go on community ou... more BackgroundRequiring adults with intellectual and developmental disabilities to go on community outings with co‐residents and staff is contrary to community‐living policy's focus on person centredness and choice of activities/companions.MethodWe analysed 2018‐19 National Core Indicators data from 36 US states concerning 7968 adults living in staffed, non‐family, multi‐client settings. The focus outcome was being able to stay home if you want when others in your home go out.ResultsThe 42.0% of participants who could stay home were more likely to go out with friends, family or alone, and less likely to go out with staff. Those who could stay home participated in a similar variety of community activities and went out more often to shop or for errands.ConclusionsIndividuals who could stay home likely had more choice about where, when and with whom they went out. Strategies for greater person‐centredness are proposed.

Policy Implications, Eligibility, and Demographic Characteristics of People With Intellectual Disability Who Access Self-Directed Funding in the United States

Intellectual and Developmental Disabilities, Apr 1, 2021

This study identifies factors (state of residence, personal characteristics and living situation)... more This study identifies factors (state of residence, personal characteristics and living situation) associated with access to self-directed funding (SDF) for adults with intellectual disability in the U.S. Data from 10,033 participants from 26 states in the 2012-13 National Core Indicators Adult Consumer Survey were analyzed. We examined state, age group, residence type, disability diagnoses, mental health status and type of disability support funding used. Availability of SDF for people with ID varied by state, which aligned mostly with state-bystate policy data on SDF eligibility and availability. The results of a logistic regression analysis demonstrated that access to SDF was lower in older adults and higher for people who lived in their parents' or relatives' home, an independent home, and with certain personal characteristics. Potential influences from policy and practice and approaches to increase access to SDF are discussed.

Using the Independent Monitoring for Quality Program to Examine Longitudinal Outcomes for People With Intellectual and Developmental Disabilities

Intellectual and Developmental Disabilities, Jun 1, 2023

The purpose of this study is to lay a foundation for illustrating the importance of longitudinal ... more The purpose of this study is to lay a foundation for illustrating the importance of longitudinal data collection by sharing the results of the Independent Monitoring for Quality (IM4Q) program in Pennsylvania designed to collect data over time on the quality of services for adults with intellectual and developmental disabilities. In this article, we report on the history and characteristics of the IM4Q program, describe the key variables of interest, and highlight the trends in the key variables over 3 years of data collection (2013, 2016, and 2019). The descriptive results indicate mixed trends for the three areas of focus: comparable rates of people employed in community-based settings, less support-related choice, and better everyday choice-making outcomes.

Leisure Participation of Autistic Adults: An Ecological Momentary Assessment Feasibility Study

American Journal on Intellectual and Developmental Disabilities

Autistic adults participate less and express lower satisfaction in leisure activities than nonaut... more Autistic adults participate less and express lower satisfaction in leisure activities than nonautistic adults, although literature is limited. The multifaceted nature of leisure participation makes it challenging to measure, with most measures being retrospective. Ecological momentary assessments (EMA) can reduce recall bias. This pilot study assessed the feasibility and acceptability of EMA among autistic adults. Participants (N = 40) were recruited via email and online. After completing a baseline interview, participants were asked to complete a once-daily survey for 30 days, in which they received survey links through a text messaging smartphone app. Surveys asked participants to report whether they participated in any leisure activities during the day, their level of enjoyment, with whom they interacted, and where they participated. The EMA appeared feasible in this sample, as participants completed the daily survey on average 27.05 (SD = 3.92) days. Regarding acceptability, mos...

Current services and outcomes of formerly institutionalised and never‐institutionalised US adults with intellectual and developmental disabilities: A propensity score matching analysis

Journal of Applied Research in Intellectual Disabilities

BackgroundDeinstitutionalization research shows better services and outcomes relative to institut... more BackgroundDeinstitutionalization research shows better services and outcomes relative to institutional life but has not compared formerly institutionalised and never‐institutionalised service users.MethodsWe used propensity score matching (PSM) to match formerly institutionalised and never‐institutionalised participants on six personal characteristics. Data came from the 2018 to 2019 National Core Indicators In‐Person Survey. We excluded current institution residents, and states with 25% + of missing data on former institutionalisation.ResultsOverall, 15.5% of participants in the 29‐state full sample had lived in an institution for 1 year or more. Findings from the PSM sample showed that former‐institution residents were more likely to use congregate living arrangements and less likely to live with family. They experienced more loneliness, less support‐related choice, and had a consistent pattern of disability service‐focused social connections.ConclusionsMany former institution res...

Editorial: Improving the quality of outcome measurement for adults with disabilities receiving community-based services

Frontiers in Rehabilitation Sciences

Editorial on the Research Topic Improving the quality of outcome measurement for adults with disa... more

Incentives, Wages, and Retention Among Direct Support Professionals: National Core Indicators Staff Stability Survey

Intellectual and Developmental Disabilities, Mar 17, 2022

Direct support professionals (DSPs) provide a range of supports in a variety of settings to peopl... more Direct support professionals (DSPs) provide a range of supports in a variety of settings to people with intellectual and developmental disabilities (IDD) who count on these supports to live, work, and contribute in their communities. Despite this, high annual DSP turnover rates are problematic. DSP turnover is disruptive to people who receive supports as the lack of stable, reliable supports can negatively impact their important day-today outcomes (e.g., safety, community participation, and choice). Turnover also comes at a cost to provider organization in the hiring and training of new employees. To retain DSPs, organizations offer incentives (e.g., bonuses, retirement plans, health insurance). This study utilized National Core Indicators® (NCI®) Staff Stability Survey 2018 data to examine the relationships between wages, different types of incentives, including benefits (e.g., paid time off, access to health insurance, disability insurance, wage bonuses, health incentives programs, etc.) to annual turnover in participating states in the US. Results indicated that incentives were not positively associated with DSPs retention. Staff wages were the most notable factor associated with differences in DSP retention rates, along with the state in which the organization was located as well organization vacancy rates.

Comparing observational software with paper and pencil for time-sampled data: A field test of Interval Manager (INTMAN)

Behavior Research Methods, Feb 1, 2006

INTMAN is an observational software system used for time-sampled data in behavioral research proj... more INTMAN is an observational software system used for time-sampled data in behavioral research projects that rely on direct observation. Traditional methods of collecting this type of data have normally relied on using paper-andpencil methods. In the past 15 years, computer-assisted direct observation programs have become widely available and readily accessible with increasingly affordable hardware options (Thompson, Felce, & Symons, 2000) applied in a wide range of educational settings (Greenwood, Carta, & Dawson, 2000) and community-based settings (Felce & Emerson, 2000). Despite claims suggesting or implying that computer-assisted data collection is superior to traditional methods, to date there is a very limited number of studies that empirically compare the two methods of data collection in general or specific to time-sampling procedures on dimensions relevant to research considerations including efficiency, accuracy, and cost. White, King, and Duncan (2002) compared a traditional data collection method in the form of paper and pencil with voice recognition technology (VRT) in a study of social interaction and singing in cowbirds. The time for data input and interobserver agreement were contrasted, and overall results showed that the VRT method was more time efficient and led to significantly more accurate interobserver agreement. Saudargas and Zanolli (1990) and Klesges, Woolfrey, and Vollmer (1985) contrasted traditional and computer-assisted methods to assess the accuracy of momentary time sampling against real-time data collection but did not focus on the advantages and disadvantages of the methods themselves along a broader set of dimensions relevant to the decisions a researcher would need to make in choosing between traditional and computer-assisted methods. The purpose of this article is twofold. The first is to introduce and describe the Interval Manager (INTMAN) software system designed to facilitate time-sampled data collection. The second is to report the results of a preliminary study that directly compared INTMAN with a traditional paper-and-pencil time-sampled data collection system along five dimensions including setup time, duration of data entry, duration of interobserver agreement calculations based on Cohen's kappa, accuracy, and cost. INTMAN: System Description and Program Operation The INTMAN software system was designed to facilitate the collection of time-sampled data in field-based settings. INTMAN has a collection component and an analysis component. The collection component runs on Pocket 165

Community participation and staying home if you want: US adults with intellectual and developmental disabilities

JARID, 2022

Background: Requiring adults with intellectual and developmental disabilities to go on community ... more Background: Requiring adults with intellectual and developmental disabilities to go on community outings with co-residents and staff is contrary to community-living policy's focus on person centredness and choice of activities/companions. Method: We analysed 2018-19 National Core Indicators data from 36 US states concerning 7968 adults living in staffed, non-family, multi-client settings. The focus outcome was being able to stay home if you want when others in your home go out. Results: The 42.0% of participants who could stay home were more likely to go out with friends, family or alone, and less likely to go out with staff. Those who could stay home participated in a similar variety of community activities and went out more often to shop or for errands. Conclusions: Individuals who could stay home likely had more choice about where, when and with whom they went out. Strategies for greater person-centredness are proposed.

Current services and outcomes of formerly institutionalised and never-institutionalised US adults with intellectual and developmental disabilities: A propensity score matching analysis

JARID, 2023

Background: Deinstitutionalization research shows better services and outcomes relative to instit... more Background: Deinstitutionalization research shows better services and outcomes relative to institutional life but has not compared formerly institutionalised and neverinstitutionalised service users. Methods: We used propensity score matching (PSM) to match formerly institutionalised and never-institutionalised participants on six personal characteristics. Data came from the 2018 to 2019 National Core Indicators In-Person Survey. We excluded current institution residents, and states with 25% + of missing data on former institutionalisation. Results: Overall, 15.5% of participants in the 29-state full sample had lived in an institution for 1 year or more. Findings from the PSM sample showed that formerinstitution residents were more likely to use congregate living arrangements and less likely to live with family. They experienced more loneliness, less support-related choice, and had a consistent pattern of disability service-focused social connections. Conclusions: Many former institution residents remain disadvantaged relative to matched peers. There is a need to identify factors to enhance services and outcomes following deinstitutionalization.

Choices, Preferences, and Disability: A View from Central and Eastern Europe

Springer eBooks, 2020

In this chapter, the authors discuss how people with disabilities have expressed preferences and ... more In this chapter, the authors discuss how people with disabilities have expressed preferences and made choices in the context of growing up and living in Central and Eastern Europe. It is argued that the historical, cultural, and political context or macrosystems of the post-Soviet region have influenced choice making and self-determination of people living in the Czech Republic and Ukraine. A case is made for a fundamental difference in the development of self-determination in the post-Soviet region, in comparison to Western societies, that has manifested itself in the disempowerment of the individual and empowerment of the macrosystem. Choices people with disabilities make on daily basis as well as those about their lives are described in the context of the ecological model, and we argue that the relationship between macrosystems and people with disabilities and their families within societies has been decidedly understudied. In addition to making more general observations and comparisons relevant to people with disabilities living in Central and Eastern Europe vs. in Western countries, cases of the Czech Republic and Ukraine are illustrated in more detail. This chapter concludes by providing recommendations on how to enhance choice making for people with disabilities through social capital and advocacy regardless of where they live.

Association of state-level and individual-level factors with choice making of individuals with intellectual and developmental disabilities

Research in Developmental Disabilities, Dec 1, 2018

Background: State-level factors have not been examined in research on choice, despite findings of... more Background: State-level factors have not been examined in research on choice, despite findings of between-state differences. Aims: To examine both individual and state-level factors associated with choice. Methods and procedures: We used multilevel modeling to explore two choice scales, support-related and everyday choice, based on the National Core Indicators (NCI) data from 2013-14. Outcomes and Results: At the individual level, milder ID, greater mobility, fewer problem behaviors, answering questions independently, communicating verbally, and living in a non-agency setting, particularly independent settings, were associated with more choice for both scales. State-level factors overall explained variance for both scales, but were more strongly associated with support-related choice. A higher proportion of people with IDD living independently within the state predicted more support-related choice. High cost of living within a state predicted less everyday choice. Higher proportion of people living with family and lower proportion being served within a state predicted more everyday choice. Conclusions and implications: These findings suggest further study of choice in relation to policies that: (1) increase independent living for individuals with IDD, and (2) assist individuals/families living in high cost states. State differences on important QOL outcomes are likely to be associated with economic and system-based factorsbeyond individual differences. What this paper adds? Comparisons among US states have the potential to begin to identify how state policy, funding and contextual factors are related to outcomes for people with IDD, thereby providing evidence on how these factors might be changed to achieve better outcomes. This paper is an important addition as it examines the relationship between state-level factors and choice by people with IDD. These factors include features of the state IDD service-system, such as the proportion of IDD service users within a state living independently. Such factors are within the control of state IDD administrators and so are potentially modifiable. This paper uses a new statistical approach in this field, multilevel modeling, to explore these state-level contextual factors on the outcome of choice for individuals with IDD. Compared to previous studies that found living in different states significantly affected both an everyday and support-related choice for people with IDD receiving services, this paper was able identify specific state-level factors that contribute

Participation and Companions for Socially Inclusive Community Activities by U.S. Adults With Intellectual and Developmental Disabilities

PubMed, Aug 1, 2023

We investigated socially inclusive participation in mainstream community groups and religious ser... more We investigated socially inclusive participation in mainstream community groups and religious services by U.S. adults with intellectual and developmental disabilities using weighted secondary analyses of 2018-2019 National Core Indicators data. Overall, 34.4% participated in community groups and 42.4% in religious services. Some 45.0% had an unmet desire for community-group participation, whereas most (75.0%) attended a religious service as often as preferred. The type of companion varied by living arrangements and age group. Attending community groups and religious services were each strongly associated with better friendship outcomes but were not related to loneliness. The large unmet demand for community-group participation reveals a major gap. The friendship outcomes underline the benefits of socially inclusive community participation.

Mothers and fathers with intellectual and developmental disabilities who use US disability services: prevalence and living arrangements

Journal of Intellectual Disability Research, Dec 23, 2021

BackgroundLittle information is available on the prevalence of mothers and fathers with intellect... more BackgroundLittle information is available on the prevalence of mothers and fathers with intellectual and developmental disabilities among US disability‐service users. Child removal is a key issue for these parents.MethodsWe analysed 2018–19 National Core Indicators data from 35 states on US adults with intellectual and developmental disabilities being a parent. For parents of a child under 18, we examined whether the child lived with them.ResultsPrevalence of parenthood was 3.7% (6.0% women, 2.1% men). Among parents of a child under 18, 44.0% had their child living with them. Being a mother, being married and living with family were positively associated with child co‐residence. Parents with co‐resident children mainly lived in their own home (59.7%) or their family's home (32.3%).ConclusionsOur prevalence estimate suggests a national total of 33 794 US parents who use intellectual and developmental disabilities services. For parents living with their child, a critical task for disability services is to enable parents and children to live in a family setting.

Responsiveness to Self-Report Interview Questions by Adults With Intellectual and Developmental Disability

Intellectual and Developmental Disabilities, Jun 1, 2015

An important line of research involves asking people with intellectual and developmental disabili... more An important line of research involves asking people with intellectual and developmental disability (IDD) to self-report their experiences and opinions. We analyzed the responsiveness of 11,391 adult users of IDD services to interview questions from Section 1 of the 2008-2009 National Core Indicators-Adult Consumer Survey (NCI-ACS). Proxy responses were not allowed for the selected questions. Overall, 62.1% of participants answered the questions and were rated by interviewers as understanding the questions and as responding consistently. Most participants responded in an all-or-none fashion, answering either all or most questions or few to none. Individuals with milder levels of IDD and with speech as their primary means of expression were more likely to answer the questions and provide a scoreable response. Interviewer ratings of interviewees&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39; answering questions, understanding of questions, and consistent responding were each related to responsiveness.

Leisure Participation of Autistic Adults: An Ecological Momentary Assessment Feasibility Study

American journal on intellectual and developmental disabilities, Jul 1, 2023

Autistic adults participate less and express lower satisfaction in leisure activities than nonaut... more Autistic adults participate less and express lower satisfaction in leisure activities than nonautistic adults, although literature is limited. The multifaceted nature of leisure participation makes it challenging to measure, with most measures being retrospective. Ecological momentary assessments (EMA) can reduce recall bias. This pilot study assessed the feasibility and acceptability of EMA among autistic adults. Participants (N = 40) were recruited via email and online. After completing a baseline interview, participants were asked to complete a once-daily survey for 30 days, in which they received survey links through a text messaging smartphone app. Surveys asked participants to report whether they participated in any leisure activities during the day, their level of enjoyment, with whom they interacted, and where they participated. The EMA appeared feasible in this sample, as participants completed the daily survey on average 27.05 (SD = 3.92) days. Regarding acceptability, most agreed that survey timing was convenient, that it was easy to enter responses and answer questions daily, and that they had enough response time. Overall, this study supports the use of EMA methodology among autistic adults. Future research should follow and improve upon these EMA data collection practices to examine daily behavior and well-being among autistic adults.

Examining the National Core Indicators' Potential to Monitor Rights of People With Intellectual and Developmental Disabilities According to the CRPD

Journal of Policy and Practice in Intellectual Disabilities, Sep 10, 2019

The Convention on the Rights of Persons with Disabilities (CRPD) aims to change attitudes and pol... more The Convention on the Rights of Persons with Disabilities (CRPD) aims to change attitudes and policies toward individuals with disabilities worldwide and to foster the inclusion and independence of persons with disabilities in society. The current study was designed to assess empirically the extent to which people with intellectual and developmental disabilities (IDD) exercise certain rights in the United States using the National Core Indicators Adult Consumer Survey (NCI-ACS), particularly to see if items could be scaled to measure certain CRPD articles reliably. An additional aim was to assess the impact of guardianship on the rights of individuals with IDD. NCI-ACS data were analyzed employing factor analysis, multiple analysis of variance, and regression modeling. These approaches allowed us to assess the relationship between guardianship and rights controlling for known covariates (such as level of ID) on outcomes. Results indicate that the NCI-ACS contains several items with sound psychometric properties that can assist in measuring certain rights of people with disabilities according to CRPD. Specifically, employment and budgetary agency appear to be areas of rights outlined by the CRPD that the NCI-ACS can help measure. Finally, the results indicated that people who have an appointed legal guardian are less likely to be employed and to have less social privacy. This study indicates the NCI-ACS has the potential to measure access to CRPD rights, such as employment and budgetary agency, by people with IDD. More work is needed to evaluate additional promising measures of a wider range of CRPD articles. Alternatives to guardianship need to be examined in order to increase the opportunities for people with IDD to exercise their rights.

Community employment, facility-based work, and day activities for working age people with intellectual and developmental disability

Journal of Vocational Rehabilitation, Jun 15, 2022

BACKGROUND: Individuals with Intellectual and Developmental Disability (IDD) participate in a var... more BACKGROUND: Individuals with Intellectual and Developmental Disability (IDD) participate in a variety of day/employment activities including community-based activities and work and facility-based activities and work. These different activities have important implications for community inclusion and economic independence. OBJECTIVE: The purpose of this study is to use the National Core Indicators-In person Survey (NCI-IPS) to explore the prevalence of day/employment activities for adult service users with IDD and to determine what personal and environmental factors are related to each type of activity. METHODS: The data analyzed in this study come from the 2018-19 National Core Indicators (NCI), a survey of adult services users with IDD in the U.S. We used descriptive statistics and multinominal logistic regression to explore how the various covariates differentially relate to the four day/employment activity types. RESULTS: A variety of personal and environmental characteristics were associated with each type of activity. Characteristics related to equity (e.g., race and gender) and support needs (e.g., mental health) were associated with less community-based work. CONCLUSIONS: This study was the first, to our knowledge, to describe the complexity of day/employment activities individuals with IDD experience in terms of prevalence and overlap. Further, this study provides evidence that certain profiles are leading to different experiences and that services do impact service users employment opportunities.

Contextual Factors Associated with Implementing Active Support in Community Group Homes in the United States: A Qualitative Investigation

Journal of Policy and Practice in Intellectual Disabilities, Nov 22, 2017

Although numerous studies in the U.K. and Australia have shown that Active Support (AS) is an eff... more Although numerous studies in the U.K. and Australia have shown that Active Support (AS) is an effective intervention in increasing staff assistance and engagement for people with intellectual and developmental disabilities (IDD) who live in small community residential settings, studies in Taiwan and the U.S. did not replicate these results. The mixed findings may be due to the unique challenges faced by small community group homes serving people with disabilities from different countries. The purpose of this qualitative study was to describe the views of participants in a AS implementation study about contextual factors that affected their efforts at implementing AS in a U.S. context. Interviews were conducted with Direct Support Professionals (DSPs) and AS trainers. A focus group was conducted with directors from organizations that implemented AS in the U.S. This study revealed several reported challenges to AS implementation, including the lack of leadership support, lack of buy-in, and high staff turnover rate. Despite these difficulties, study participants identified positive impacts of AS on both DSPs and people with disabilities. Implications of these findings are discussed.

Extending Curriculum-Based Measurement to Assess Performance of Students with Significant Cognitive Disabilities

University of Minnesota Press eBooks, Sep 1, 2012

Community participation and staying home if you want: <scp>US</scp> adults with intellectual and developmental disabilities

Mental Handicap Research, Jun 5, 2022

BackgroundRequiring adults with intellectual and developmental disabilities to go on community ou... more BackgroundRequiring adults with intellectual and developmental disabilities to go on community outings with co‐residents and staff is contrary to community‐living policy's focus on person centredness and choice of activities/companions.MethodWe analysed 2018‐19 National Core Indicators data from 36 US states concerning 7968 adults living in staffed, non‐family, multi‐client settings. The focus outcome was being able to stay home if you want when others in your home go out.ResultsThe 42.0% of participants who could stay home were more likely to go out with friends, family or alone, and less likely to go out with staff. Those who could stay home participated in a similar variety of community activities and went out more often to shop or for errands.ConclusionsIndividuals who could stay home likely had more choice about where, when and with whom they went out. Strategies for greater person‐centredness are proposed.

Policy Implications, Eligibility, and Demographic Characteristics of People With Intellectual Disability Who Access Self-Directed Funding in the United States

Intellectual and Developmental Disabilities, Apr 1, 2021

This study identifies factors (state of residence, personal characteristics and living situation)... more This study identifies factors (state of residence, personal characteristics and living situation) associated with access to self-directed funding (SDF) for adults with intellectual disability in the U.S. Data from 10,033 participants from 26 states in the 2012-13 National Core Indicators Adult Consumer Survey were analyzed. We examined state, age group, residence type, disability diagnoses, mental health status and type of disability support funding used. Availability of SDF for people with ID varied by state, which aligned mostly with state-bystate policy data on SDF eligibility and availability. The results of a logistic regression analysis demonstrated that access to SDF was lower in older adults and higher for people who lived in their parents' or relatives' home, an independent home, and with certain personal characteristics. Potential influences from policy and practice and approaches to increase access to SDF are discussed.

Using the Independent Monitoring for Quality Program to Examine Longitudinal Outcomes for People With Intellectual and Developmental Disabilities

Intellectual and Developmental Disabilities, Jun 1, 2023

The purpose of this study is to lay a foundation for illustrating the importance of longitudinal ... more The purpose of this study is to lay a foundation for illustrating the importance of longitudinal data collection by sharing the results of the Independent Monitoring for Quality (IM4Q) program in Pennsylvania designed to collect data over time on the quality of services for adults with intellectual and developmental disabilities. In this article, we report on the history and characteristics of the IM4Q program, describe the key variables of interest, and highlight the trends in the key variables over 3 years of data collection (2013, 2016, and 2019). The descriptive results indicate mixed trends for the three areas of focus: comparable rates of people employed in community-based settings, less support-related choice, and better everyday choice-making outcomes.

Leisure Participation of Autistic Adults: An Ecological Momentary Assessment Feasibility Study

American Journal on Intellectual and Developmental Disabilities

Autistic adults participate less and express lower satisfaction in leisure activities than nonaut... more Autistic adults participate less and express lower satisfaction in leisure activities than nonautistic adults, although literature is limited. The multifaceted nature of leisure participation makes it challenging to measure, with most measures being retrospective. Ecological momentary assessments (EMA) can reduce recall bias. This pilot study assessed the feasibility and acceptability of EMA among autistic adults. Participants (N = 40) were recruited via email and online. After completing a baseline interview, participants were asked to complete a once-daily survey for 30 days, in which they received survey links through a text messaging smartphone app. Surveys asked participants to report whether they participated in any leisure activities during the day, their level of enjoyment, with whom they interacted, and where they participated. The EMA appeared feasible in this sample, as participants completed the daily survey on average 27.05 (SD = 3.92) days. Regarding acceptability, mos...

Current services and outcomes of formerly institutionalised and never‐institutionalised US adults with intellectual and developmental disabilities: A propensity score matching analysis

Journal of Applied Research in Intellectual Disabilities

BackgroundDeinstitutionalization research shows better services and outcomes relative to institut... more BackgroundDeinstitutionalization research shows better services and outcomes relative to institutional life but has not compared formerly institutionalised and never‐institutionalised service users.MethodsWe used propensity score matching (PSM) to match formerly institutionalised and never‐institutionalised participants on six personal characteristics. Data came from the 2018 to 2019 National Core Indicators In‐Person Survey. We excluded current institution residents, and states with 25% + of missing data on former institutionalisation.ResultsOverall, 15.5% of participants in the 29‐state full sample had lived in an institution for 1 year or more. Findings from the PSM sample showed that former‐institution residents were more likely to use congregate living arrangements and less likely to live with family. They experienced more loneliness, less support‐related choice, and had a consistent pattern of disability service‐focused social connections.ConclusionsMany former institution res...

Editorial: Improving the quality of outcome measurement for adults with disabilities receiving community-based services

Frontiers in Rehabilitation Sciences

Editorial on the Research Topic Improving the quality of outcome measurement for adults with disa... more