Core Indicators Adult Consumer Survey Research Articles

Factors associated with use of medication for behavioral challenges in adults with intellectual and developmental disability

Background/AimsPersons with intellectual or developmental disabilities and who exhibit challenging behaviors are often prescribed medication to control behavior. Little is known about the environmental factors that may be associated with taking these medications. Methods and outcomesThis study examined the association between individual and intermediate or environmental factors and the documented use of medication for clients with intellectual or developmental disabilities (IDD) who exhibit challenging behavior, using the 2014−15 National Core Indicators Adult Consumer Survey dataset. Results and conclusionsIndividual-level variables associated with a higher likelihood of taking medication for persons with IDD exhibiting challenging behaviors included being of younger age, male gender, having moderate or severe intellectual disability, being ambulatory, communicating verbally, having a behavioral plan, requiring support for behavioral challenges, and having a history of mental illness. Environment-level variables included infrequently eating out and having less everyday choice. This study found that restrictions in opportunities to make choices in their life was associated with a greater likelihood of being on a medication for persons with IDD who exhibit challenging behavior. Living in group home settings also increased the likelihood of medication use. A limitation of the study is a lack of information on why medications were prescribed and whether they were intended to treat the challenging behavior. ImplicationsThis work has important implications for health providers, as addressing malleable social factors may provide an avenue for reducing challenging behaviors without the need for medication.

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

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 United States. Data from 10,033 participants from 26 states in the 2012-2013 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 and aligned mostly with state-by-state 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.

Age-Group Differences in Body Mass Index, Weight, and Height in Adults With Down Syndrome and Adults With Intellectual Disability From the United States.

The authors examined if body mass index (BMI), weight, and height across age groups differ between adults with Down syndrome (DS) and adults with intellectual disability but without DS. They conducted secondary analyses of cross-sectional data from 45,803 individuals from the United States from 2009 to 2014 of the National Core Indicators Adult Consumer Survey across five age groups: 18-29, 30-39, 40-49, 50-59, and 60+ years. For both men and women with DS, BMI and weight increased between the 18- to 29- and the 30- to 39-year age groups and decreased thereafter. For both men and women with intellectual disability, BMI and weight increased between the 18- to 29- and the 30- to 39-year age groups, stayed about the same until the 50- to 59-year age group, and decreased thereafter. Height demonstrated a small but significant decrease with older age in all groups. These cross-sectional comparisons indicate that BMI and weight may start decreasing at a younger age in adults with DS than in adults with intellectual disability.

Aging, Community-Based Employment, Mobility Impairment, and Retirement: National Core Indicators–Adult Consumer Survey Data

Little is known about how, when, or why individuals with intellectual and developmental disabilities (IDD) retire. Recognizing the changing needs of older adults with IDD is critical to support person-driven services and development of best practices in aging transitions. Using secondary analysis of the 2016 to 2017 National Core Indicators–Adult Consumer Survey (NCI-ACS) data for adults with IDD, we examined the relation between independent mobility (i.e., without aids), age group, level of intellectual disability, and type of employment/activity program, with a focus on mobility and community-based employment in older age groups. There was an overall age-related decline in mobility, but the prevalence of mobility impairment by age group was related to employment type. The percentage who were independently mobile was highest for community employment in every age group. The percentage of individuals by age group in community employment fell significantly from middle age onward, suggesting some former community-based workers had retired. There was no significant age-related difference in the percentage in facility-based employment across these age groups. Mobility limitations may be a barrier to obtaining or retaining community-based employment. Age-related mobility impairment may be associated with premature retirement, and could affect travel to and from work, undertaking work tasks, or both. Closer examination is needed of aging, community employment, and age-related mobility limitations to understand the specific causes of these effects on employment and identify supports and accommodations.

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

AbstractThe 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.

Alignment between the Convention on the Rights of Persons with Disabilities and the National Core Indicators Adult Consumer Survey

AbstractOn December 13, 2006, after over two decades of advocacy efforts, the United Nations adopted the Convention on Rights on Persons with Disabilities (CRPD). More than 150 countries have ratified or at least signed this international convention, to date. An important component of CRPD implementation is a systematic effort to evaluate whether and what extent the rights as stated in the CRPD are being upheld by individual countries. The purpose of this paper was to contribute to a U.S. and international discussion about monitoring the rights of persons with disabilities as codified by the CRPD by examining the potential use of the National Core Indicators Adult Consumer Survey (NCI‐ACS) for this purpose. The NCI‐ACS collects annual quality outcome data from over 13 000 people with intellectual and developmental disabilities in 46 U.S. states. A crosswalk between the CRPD Articles and the 2013–14 NCI‐ACS was conducted to map the survey questions onto the CRPD. Forty‐seven variables from the NCI‐ACS focused on different aspects of disability rights were identified as related to 12 CRPD Articles, suggesting a moderate overlap between the NCI‐ACS and the CRPD. Next steps are discussed.

Personal characteristics and outcomes of individuals with developmental disabilities who need support for self-injurious behaviour.

For people with intellectual and developmental disabilities, self-injurious behaviour (SIB) can have serious negative effects on both health and quality of life. This descriptive analysis will provide information on the characteristics and outcomes of a subsample of individuals who are identified as needing some or extensive support for SIB in the National Core Indicators Adult Consumer Survey sample. The data for this analysis come from states that participated in the 2015-2016 data collection cycle of National Core Indicators Adult Consumer Survey which is a face-to-face survey of adults receiving services through state developmental disability agencies. The characteristics and outcomes of individuals who need at least some support for SIB differ from those of individuals with intellectual and developmental disabilities who do not need support for SIB. Individuals with SIB support needs, for example, tend to live in more structured settings, have fewer relationships, less inclusion in their communities and poorer employment outcomes. The exploratory descriptive analysis concludes with suggested recommendations for more standardised definitions of SIB in public systems, enhanced behaviour plan protocols and the need for additional research.

Putting the Research in Context: The Life Experience and Outcomes of Adults on the Autism Spectrum Receiving Services in 29 States

Abstract State and federal reforms in the disability field have resulted in the expansion of supports that foster inclusion and integration in the mainstream of American society. However, adults with an autism spectrum disorder (ASD) diagnosis do not appear to have benefited from these changes to the same extent as those without an ASD diagnosis. This article uses National Core Indicators Adult Consumer Survey data to examine the demographic characteristics and outcomes for adults with an ASD diagnosis who receive services from state intellectual and developmental disabilities (IDD) systems. Building on the data, policy and research approaches are suggested.

Factors associated with meeting physical activity guidelines by adults with intellectual and developmental disabilities

BackgroundMany individuals with intellectual and developmental disabilities (IDD) have sedentary lifestyles. Aims(a) compare adults with IDD with the general adult population on adherence to U.S. physical activity (PA) guidelines, and (b) determine what factors predict adherence to PA guidelines by adults with IDD. MethodsWe compared adults with IDD from the 2011–2012 National Core Indicators Adult Consumer Survey (NCI-ACS) with the general U.S. population on meeting PA guidelines. We examined the association of demographic, diagnostic, mobility, health and community participation variables with meeting PA guidelines by adults with IDD. ResultsThe rate for adults with IDD meeting PA guidelines (13.5%) was less than half that of the general population (30.8%). Among adults with IDD, at-risk groups included those with more severe disability, Down syndrome, mobility impairments, obesity, poor health, mental illness, no independent access to community exercise, and less frequent participation in community exercise. Going out for exercise was the only form of community participation associated with meeting PA guidelines. People who accessed the community for exercise independently (i.e., alone) were more likely to meet PA guidelines. ConclusionsInterventions aimed at increasing PA for people with IDD should consider these factors in their design.