Indicators of choking risk in adults with learning disabilities: a questionnaire survey and interview study

Purpose. Feeding and swallowing impairments are key predictors of increased morbidity and mortality in adults with learning disabilities. This postal survey and interview study sought to identify risk factors in adults with learning disabilities who have histories of choking. Method. A total of 2000 questionnaires were sent to carers of all adults with learning disabilities registered as service users by three local health authorities. (A 'service user' may be using any specialist learning disability health or social care facility with day, residential or therapeutic services). Of the 674 service users for whom surveys were returned, 47 were living in hospital, 396 were living in residential or group homes and 208 were living with relatives, or in their own homes. Eighteen subjects who had reported serious or repeated episodes of choking were interviewed in depth in their residences or workplaces. Responses were subjected to frequency analyses. Personal characteristics were analysed. Choking patterns were differentiated by food texture. Results. A total of 34% of questionnaires on 674 service users were returned; 42% of respondents reported one or more choking episodes. There was a significantly greater occurrence of choking among people with more severe learning disability, with Down syndrome, people who had an incomplete dentition or were taking a greater number of psychotropic drugs. Antisocial eating habits learnt in institutional settings presented an additional choking hazard for some individuals. Conclusion. Choking is a serious hazard for many adults with learning disabilities. This study establishes many of the characteristics associated with swallowing problems in this population. Clinicians and carers should benefit from awareness of these predictors, leading to better management of eating behaviours and habits. A choking and swallowing risk assessment should be included in routine health assessments of adults with learning disability, paying especial attention to the condition of a person's teeth; possible side effects from prescribed medication, and abnormal eating behaviour.     

Community services for young adults with motor disabilities – A paradox

Purpose.?To understand the contribution of educational, employment, transportation, and assured income service programs to the successful transition to adulthood of young persons with motor disabilities.

Method.?Personal interviews of 76 young adults ages 20 to 30 years with a diagnosis of cerebral palsy (n?=?54) or spina bifida (n?=?22) varying in functional mobility. Content analysis of transcribed interviews was conducted and themes identified.

Results.?‘Paradox of Services' emerged as a dominant theme across all four service sectors. Services designed to encourage independence and full participation for the young adults in their communities often restricted their independence and employment options in young adulthood.

Conclusions.?Services need to be more individualized and flexible to accommodate the environmental and personal needs of the young adults. Rehabilitation professionals have important roles at both an individual family level and the systems level to ensure the ‘best fit’ between persons with motor disabilities and the services available to them. Contemporary views of disability support rehabilitation intervention targeting both individual and environmental factors.     

Discrimination and other barriers to employment for teens and young adults with disabilities

Purpose.?Having a disability is a barrier to securing and maintaining employment. Most research has focussed on employment barriers among adults, while very little is known about young people's experience finding paid work.

Method.?Young people aged 15–24 were selected from the 2006 Participation and Activity Limitation Survey to explore the barriers and discrimination they experienced in seeking employment ((n == 1898)).

Results.?Our findings show that teens and young adults with disabilities encountered several barriers and discrimination in seeking paid employment. The types of barriers that these young people encountered varied by age and type of disability. There were fewer yet different types of barriers to working that were encountered between the two age groups ((teens and young adults)). Several socio-demographic factors also influenced barriers to working. Severity of disability, type and duration of disability, level of education, gender, low income, geographic location and the number of people living in the household all influenced the kind of barriers and work discrimination for these young people.

Conclusions.?Rehabilitation and life skills counsellors need to pay particular attention to age, type of disability and socio-demographic factors of teens and young adults who may need extra help in gaining employment.     

Attitudes and perceptions towards disability and sexuality

Purpose.?To describe current societal perceptions and attitudes towards sexuality and disability and how social stigma differs between individuals living with visible and invisible disabilities.

Method.?A qualitative approach was used to explore attitudes and perceptions towards sexuality and disability. Focus groups were conducted with the following groups: service providers, people with visible disabilities, people with invisible disabilities and the general public. The focus group participants viewed ‘Sexability’ a documentary film on sexuality and disability to stimulate discussion midway through the session.

Results.?Findings suggest that individuals with disabilities are commonly viewed as asexual due to a predominant heteronormative idea of sex and what is considered natural. A lack of information and education on sexuality and disability was felt to be a major contributing factors towards the stigma attached to disability and sexuality.

Conclusions.?Stigma can lead individuals to internalise concepts of asexuality and may negatively impact confidence, desire and ability to find a partner while distorting one's overall sexual self-concept. Societal attitudes and perceptions are driven by education and knowledge, if there is no exposure to sexuality and disability, it follows suit that society would have a narrow understanding of these issues. Further research should focus on how best to educate and inform all members of society.     

Problems with accessibility to health services by persons with disabilities in São Paulo,Brazil

Purpose.?To describe the occurrence of self-reported problems of accessibility to health services used by persons with disabilities in terms of social and health services variables.

Methods.?We performed a cross-sectional household survey designed to assess problems with accessibility to health services faced by persons with disabilities. We interviewed 333 persons in São Paulo city, in 2007. Variables related to the presence of accessibility problems, disabilities, gender, age, family head income, ethnicity, use of health services and others were analysed using frequencies, percentages, χ²-test, ANOVA and Poisson regression models.

Results.?15.92%% of the interviewed persons reported problems with accessibility to health services. Persons having multiple (prevalence ratios; PR == 2.91) or mobility disability (PR == 6.46) had more problems with accessibility than persons with hearing disability. Persons younger than 78 years old had more problems with accessibility; those who needed help to go to the health service (PR == 3.01) also.

Conclusions.?Persons with multiple or mobility disability, younger than 78 years, and those who needed help of others to go to the health service were more likely to have problems with accessibility to health services. This information could be one of the first steps to the management and/or planning of appropriate health services for persons with disabilities.     

Vision needs of people with intellectual disability in residential facilities and community-based homes for independent living

Purpose.?The purpose of this study is to assess the visual problems of people with intellectual disability in residential and community-based facilities.

Method.?A purposive sample of 146 male and female adults, aged 21 and older, living in residential facilities and community-based homes in the southern region of Israel was used to assess and compare vision problems.

Results.?Among those screened, 77% were found to have a visual problem. Only astigmatism was found to differentiate the two groups. Those living in the community, particularly men, were more likely to have astigmatism.

Conclusions.?Addressing the eye care needs of people with intellectual disability is a difficult process. People with intellectual disability, however, need ophthalmological and optometric screening to determine whether they can benefit from such intervention, including cataract removal and eyeglasses, to improve their quality of life.     

A hierarchical categorisation of tasks in mobility disability

Purpose.?In the field of long-term care, disability usually refers to difficulties in instrumental activities of daily living (IADL) or basic activities of daily living (BADL); this term may also refer to difficulties in mobility for those more interested in preventive intervention or general health promotion. The aims of this study were to (1) categorise a complete set of mobility tasks according to a revealed hierarchy, and (2) examine the relationship between this mobility hierarchy and IADL/BADL disabilities.

Methods.?We categorised nine mobility tasks according to appearance order in self-reported difficulties data obtained from a Taiwanese national database of community-dwelling elders aged over 65. We also performed correlation tests to explore the relationships of these mobility tasks with six tasks each of IADL and BADL.

Results.?The results revealed a three-level hierarchy of mobility disability: (1) mild disability indicated by difficulties in four mobility tasks, which correlated with difficulty in one IADL task; (2) moderate disability indicated by difficulties in three mobility tasks, which correlated with difficulties in most IADL tasks; and (3) severe disability indicated by difficulties in two mobility tasks, which correlated with difficulties in all BADL tasks. The same hierarchy was observed for males and females.

Conclusions.?There is a clear hierarchical structure of mobility disability that correlates differently with IADL and BADL disabilities. These results suggest that different mobility tasks should be included in disability assessments to suit specific purposes.     

The role of Botulinum toxin injection in achieving balanced muscle function

Purpose.?The aim of this study was to explore the perceptions of adults with cerebral palsy and complex communication needs (CCN) on the roles and needs of their family carers in hospital.

Method.?As part of a larger study we conducted one focus group with six adults with cerebral palsy and CCN who participated in the group using a variety of augmentative and alternative communication methods.

Results.?Participants explored why and how family carers become involved in care in hospital, what this care involves, and how this impacts upon themselves as patients and on their family carers. Reasons underlying their dependence upon family carers during a hospital stay were outlined, particularly the carer's role in communication, information exchange and access to essential daily care. Strategies to improve the experience for family carers in hospital were discussed.

Conclusion.?Involvement of family carers of people with cerebral palsy and CCN during an inpatient hospital stay is complex. Although they depend upon others for communication support, these individuals with CCN wish to be treated as adults in hospital and included in decisions about their healthcare. They want to be involved in the education of hospital staff, and to communicate directly with hospital staff.     

Barriers,activities and participation: Incorporating ICF into service planning datasets

Purpose.?Guided by the World Health Organization's International Classification of Functioning, Disability and Health (ICF), a measure of activity and participation (MAP) was developed and incorporated into the National Physical and Sensory Disability Database in Ireland. The aims of this article are to investigate and explore the relationship between the barriers, participation restriction and functioning levels experienced by people with disabilities.

Method.?Seven thousand five hundred and sixty-two personal interviews with people meeting specific eligibility criteria for registering onto the database were conducted across four health service executive regions in Ireland.

Results.?Overall, differences in barriers, participation restriction and activity limitations experienced by people with different types of disabilities were found to be significant. Furthermore, low functioning and experience of barriers were indicators of participation restriction.

Conclusions.?This article has shown that elements of the ICF have been successfully operationalised in a service planning tool through the development of the MAP. This provides a more holistic view of disability and will enable the impact of service interventions to be measured over time.     

The effect of disability on personal quality of primary care received by older adults

Purpose.?To quantify the association between disability and patient-rated personal quality of primary care among older adults.

Methods.?Participants were community-dwelling Medicare beneficiaries aged ≥65 enrolled in traditional Medicare or a Medicare health maintenance organisations. Functional status was evaluated twice (1998 and 1999) using nine activities of daily living (ADLs) and instrumental ADLs. Respondents were classified as having no, persistent, incident or previous disability based on the combination of their functional statuses at the two measurements. Self-reported personal quality of primary care was assessed using the Primary Care Assessment Survey in five domains.

Results.?Compared to those with no disability, respondents with previous disability reported lower quality of care by 0.497 (p = 0.001) of a standard deviation, whereas persistent or incident disability was not associated with a difference in personal quality of care.

Conclusions.?Previous disability appears to have a negative effect on the personal quality of care while incident and persistent disability do not. Findings for previous and incident disability may suggest a lag in the perception of quality of care. A ‘response shift’ phenomenon may explain the lack of an observed association between persistent disability and personal quality of care.     

Delivering on the promise of Plato's academy: Educational accessibility for the 21st century

Purpose.?This special volume is dedicated to eight updated and expanded communications selected from 33 refereed papers presented at the inaugural international conference on Technology-based Learning with Disability (LWD-07) which took place on July 19–20, 2007 at Wright State University in Dayton, Ohio.

Methods.?Approximately 140 researchers and practitioners attended LWD-07 representing a cross-section of K-12 and higher education, pure and applied research, disability-related industry and rehabilitation agencies with common interests in facilitating educational attainment for people with all types of disabilities through use of technology.

Results.?The communications selected for publication are representative of the breadth of interest at the nexus of disability, assistive technology, and the pedagogy of individualized learning.

Conclusions.?Access to education is a key component for quality of life and rehabilitation of any individual with a disability.     

Use of health care among adults with chronic and complex physical disabilities of childhood

Purpose.?The purpose of this study was to explore the patterns of health services utilization among adults with chronic and complex physical disabilities of childhood, specifically cerebral palsy, spina bifida, and acquired brain injuries.

Methods.?A cohort of 345 young adults who had graduated from the Bloorview MacMillan Children's Centre was identified. Their health care records were extracted from Ontario Health Insurance Plan (OHIP) and Canadian Institute for Health Information (CIHI) databases, for a four-year period. These data were analysed to estimate the frequency of out-patient physician visits and admissions to hospital.

Results.?The mean age of the sample was 21.9 years (range 19.0–26.9 years). The results show that 95% of the sample visited a physician at least once per year, and 24% had a primary care physician. On average, these adults visited physicians 11.5 times per year (approximately once per month) and were admitted to hospital once every 6.8 years.

Conclusions.?These results suggest that adults with complex physical disabling conditions from childhood have ongoing health issues that require frequent service. Their admission rate is 9.0 times that of the general population, and few have a primary care physician. A new model of service may be necessary for this high-needs group.     

Provision of assistive technology services method (ATSM) according to evidence-based information and knowledge management

Purpose.?This article develops a standardised method for assistive technology service (ATS) provision and a logical basis for research to improve health care quality. The method is ‘interoperable’ across disabilities, disciplines, assistive technology devices and ATSs.

Background.?Absence of a standardised and interoperable method for ATS provision results in ineffective communication between providers, manufacturers, researchers, policy-makers and individuals with disabilities (IWD), a fragmented service delivery system, inefficient resource allocation and sub-optimal outcomes.

Objectives.?Synthesise a standardised, interoperable AT service method (ATSM) fully consistent with key guidelines, systems, models and Federal legislation. Express the ATSM using common and unambiguous language.

Results.?Guidelines, systems, models and Federal legislation relevant to ATS provision are reviewed. These include the RESNA Guidelines for Knowledge and Skills for Provision of Assistive Technology Products and Services (RESNA Guidelines), IMPACT2 model, international classification of functioning, disability and health (ICF) and AT device classification (ATDC). Federal legislation includes the Assistive Technology Act of 2004, Americans with Disabilities Act of 2008 and Social Security Act. Based on these findings, the ATSM is synthesised and translated into common and accessible language.

Conclusion.?ATSM usage will improve communication between stakeholders, service delivery coherence, resource allocation and intervention outcomes.     

The sexual behaviour of physically disabled adolescents

Introduction.?Risky sexual behaviour is a major factor contributing to the increasing prevalence of HIV/AIDS in South Africa. A large national survey of adolescent's sexual behaviour was undertaken in 2002, however adolescents with disabilities were excluded from this study. The aim of this study is to compare the sexual behaviours of adolescents with physical disabilities to those of their non-disabled peers.

Methodology.?A cross-sectional sample was drawn from learners with physical disabilities between grades 8 and 9 in Cape Town. Data were collected using the South African youth risk behaviour survey adapted by the medical research council of South Africa.

Results.?There were responses from 91 participants, of which 56% were males. Approximately, one quarter of the special school sample reported sexual activity compared with one third of the national sample; the difference approached significance. As with the national sample, relatively few adolescents thought they were likely to contract HIV in their lifetime (12%). Fifty percent of the sample claimed that they were able to protect themselves against contracting HIV compared with 66% of the adolescents without disability. The percentage reporting two or more sexual partners in the special schools (27%) was about half that of the national sample (53%). There was little difference in the percentages reporting substance abuse related to sexual activity (14% compared with 15%) and the national sample reported more regularly use of condoms (Special school 18% compared with 25%).

Discussion.?Disabled adolescents are indulging in risky sexual behaviours, and are at equal risk as their non-disabled peers of developing HIV.

Conclusion.?Adolescents with disability must not be excluded from main stream research and health promotion activities specifically related to sex education.     

The Personal Factors of the International Classification of Functioning,Disability and Health in the literature – a systematic review and content analysis

Purpose.?This review provides an overview of the literature on the conceptualisation of the Personal Factors (PF) component of the International Classification of Functioning, Disability and Health (ICF).

Method.?A systematic literature review was carried out. Electronic searches were performed in Pubmed, Embase, PsycINFO, CINAHL and SSCI. Qualitative content analysis of statements about PF was conducted using inductive coding.

Results.?The searches yielded 353 citations, 79 papers were eligible for analyses. Five hundred thirty-eight statements about PF were extracted, condensed and coded. Beside conceptual statements, 238 examples of potential PF as well as five attempts at classifying PF were found in the literature. PF were considered in relation to clinical service provision, assessment and intervention, in research and social security contexts. PF were seen to be related to various aspects of health, functioning, disability and the environment.

Conclusions.?The analysis of the literature shows that PF is seen as relevant to the application of the ICF in various settings. The review revealed a need for standardisation of PF. The literature points to the potential of PF in enhancing the understanding of functioning, disability and health, in facilitating interventions and services for people with disabilities, and strengthening the perspective of individuals in the ICF.     

Constructing and testing a disability index in a US sample of preschoolers with disabilities

Purpose.?To develop and test an index of disability severity in a heterogeneous population of preschoolers with disabilities.

Method.?Using a nationally representative sample of 3104 children receiving special education services in the US, questions from a parent interview were used to develop an index of disability severity consisting of domains of functioning defined by gradients of severity. Regressions were used to examine the association between 15 functional domains and 8 cognitive, social/behavioural, and functional outcomes. Full and abbreviated versions of this disability index were compared. Correlations with proxy measures of disability in this population were used to establish concurrent validity, and the predictive ability of this measure was compared with that of the federally defined disability categories.

Results.?Of the 15 domains examined, most were significant predictors of at least two outcomes. A shortened index of only six variables was found to be as effective as the longer version in characterising children's level of severity. The index was significantly correlated with intervention variables such as the age at which children began receiving special education or therapy service, r(2802) = ?0.22, p ≤ 0.0001, the extent of modification of curriculum materials needed for the child, r(248) = 0.42, p ≤ 0.0001 and the number of services the child received in the school, r(2014) = 0.37, p ≤ 0.0001. Adding severity to special education category significantly increased the amount of variance in outcomes over special education category alone.

Conclusions.?These results provide evidence for the importance of the construct of severity of disability and its measurement, particularly when conducting research with very young children.