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PubMed2003

Nursing care resources for individuals with intellectual and developmental disabilities across the life span.

This article provides resources that can be used by nurses working with individuals with intellectual and developmental disabilities (I/DD) across the life span and in a variety of settings. Resources include books, articles, videos, disability-related organizations, professional organizations, and agencies providing disability-related services. Additionally, resources are provided on a range of topics, including advocacy, issues across the lifespan for individuals with I/DD, health promotion, and legislation.

Adult↗

PubMed2005

Further evaluation of microswitch clusters to enhance hand response and head control in persons with multiple disabilities.

This study was a further evaluation of microswitch clusters (combinations of two microswitches) to improve adaptive responding together with correct head position in two persons with multiple disabilities. The two participants were 19.7 and 6.6 yr. old and had profound intellectual disabilities, spastic tetraparesis, and visual impairment. They were initially taught an adaptive hand response that activated a pressure microswitch and produced favorite stimulation. Thereafter, their performance of the hand response produced favorite stimulation only when it was combined with a correct head position (detected through a mercury microswitch). Analysis showed that both participants increased the frequency of the hand response and, subsequently, the percentage of times they emitted this response in combination with correct (upright) head position. In essence, they were able to coordinate constructive occupation with exercise of appropriate posture. Performance was maintained at a 2-mo. postintervention check.

Adult↗

PubMed2026

Functional Reading Activities to Motivate and Empower: Maintenance of Reading Outcomes for Young Adults With Intellectual and Developmental Disabilities Following a Randomized Controlled Trial.

PURPOSE: This study examined whether the effects of Functional Reading Activities to Motivate and Empower (FRAME), a functional, strategy-based reading comprehension intervention for young adults with intellectual and developmental disabilities (IDDs), were maintained 6 months following the completion of the intervention and explored participants' perceptions of the intervention's feasibility, relevance, and perceived impact. METHOD: Participants were 44 young adults with IDDs (ages 18-26 years) who participated in a previously reported randomized controlled trial (FRAME participants: n = 23; controls: n = 21). Trial outcomes were assessed via telepractice at pretest, posttest, and 6-month follow-up. Six-month maintenance analyses focused on outcomes that demonstrated significant posttest group differences: use of (a) reading comprehension strategies (proximal) and (b) reading comprehension questions (distal). Participant perceptions (social validity) were collected post-intervention from FRAME participants using a structured interview protocol with closed- and open-ended items. RESULTS: At the 6-month follow-up, FRAME participants demonstrated sustained but reduced improvements in strategy use relative to controls (p = .040). Between-groups differences were not maintained for reading comprehension questions (p = .091). Participants reported high acceptability and perceived relevance of FRAME, with qualitative themes reflecting perceived improvements in comprehension, self-improvement, and increased independence. CONCLUSION: Findings suggest that FRAME supports sustainable gains in reading comprehension strategy use and is perceived as meaningful and feasible for young adults with IDDs, although additional supports may be needed to promote sustained improvements in distal comprehension outcomes. SUPPLEMENTAL MATERIAL: https://doi.org/10.23641/asha.33307218.

Humans↗

PubMed2005

Children with profound intellectual and multiple disabilities: the effects of functional movement activities.

OBJECTIVE: To determine the effect of functional movement activities within the MOVE (Mobility Opportunities Via Education) curriculum on the independence of children with profound intellectual and multiple disabilities. SUBJECTS: Forty-four children with profound intellectual and multiple disabilities. SETTING: Centres for special education. DESIGN: A quasi-experimental pretest-posttest with control group design. INTERVENTION: The children in the control group (n=12) participated in the regular programme at the centre of special education. The children within the experimental group (n=32) were additionally supported by the MOVE curriculum. METHOD: Both group comparisons and individual analyses were conducted. RESULTS: The level of independence of the experimental group increased significantly in performing movement skills; the control group did not increase significantly. At an individual level, 20 children (63%) of the experimental group improved in comparison with the control group, in which four children (33%) improved. CONCLUSION: Results showed that the children receiving functionally focused activities achieved the greatest improvements in independence when performing movement activities.

Adolescent↗

PubMed2004

Longitudinal prescribing patterns for psychoactive medications in community-based individuals with developmental disabilities: utilization of pharmacy records.

BACKGROUND: Little is known about longitudinal prescribing practices for psychoactive medications for individuals with intellectual disabilities and developmental disabilities (IDDD) who are living in community settings. METHODS: Computerized pharmacy records were accessed for 2344 community-based individuals with IDDD for whom a total of 3421 prescriptions were written during a 17-month period of study. Forty-two psychoactive medications were rank ordered in terms of prescription frequency. RESULTS: Fifty-two per cent (52%) of all prescriptions written during the study period were for psychoactive medications. Anticonvulsant, antipsychotic and antidepressant medications were the most commonly filled prescriptions among psychoactive medications. Sixty per cent (62%) of the study population was given prescriptions for more than one psychoactive medication and 36% received three or more psychoactive medications. During the study period there was a statistically significant increase in prescriptions filled for olanzapine, risperidone, valproic acid, and clonazepam whereas prescriptions filled for thioridazine, haloperidol, and benzotropine showed a significant decline (P < 0.05-0.001). Distribution of psychoactive drug class by age showed that the majority of prescriptions were filled for individuals between 20 and 50 years with the exception of prescriptions for psychostimulants which peaked for individuals prior to 20 years. CONCLUSIONS: (1) Analysis of pharmacy billing records provides a method for assessing prescribing patterns of psychoactive medications in community-based individuals with IDDD. (2) Polypharmacy for psychoactive medications is prevalent in this setting. (3) The second-generation antipsychotic medications are prominently represented by an increasing number of filled prescriptions during the study period.

Adult↗

PubMed2006

Quality of life in high-functioning adults with autism spectrum disorder: The predictive value of disability and support characteristics.

Although the concept of quality of life has increasingly been used in the field of intellectual disabilities over the past three decades, the factors contributing to quality of life of persons with autism spectrum disorder (ASD) have received relatively little attention. In this study, disability and support characteristics associated with variations in the level of quality of life among adults with ASD are identified, using self-report measures. Fifty-eight high-functioning adults with ASD participated in the study. The results of a multiple linear regression analysis reveal that support characteristics are related to quality of life in adults with ASD, whereas disability characteristics are not. The R2 effect size (0.620) is large and significant. The results reinforce the significance of an available supportive social network, the importance of a substantial needs assessment and effective professional support.

Adolescent↗

PubMed1995

Health status of Victorian special school children.

OBJECTIVE: This study sought to determine the health status and health needs of a sample of students attending special schools for the intellectually disabled in Victoria, Australia. METHODOLOGY: Two hundred and forty-nine students not previously seen by a Community Child Health Medical Officer (CCHMO) were assessed at school. Data on student, parent and staff needs were obtained through personal interviews and documented on a standard questionnaire. Health status was documented using data obtained from parents and teachers as well as the clinical assessment. RESULTS: Comparison of the number of problems reported by parents with the number confirmed at examination showed significant underreporting of vision, hearing and general medical problems. However, behaviour problems were nearly all reported. Many students had multiple problems with 63% having 2-4 problems and 11% having 5-8 problems. Ninety-nine (40%) of the 249 children seen had newly detected problems; vision (24), hearing (24) and obesity (9) were the most common. Two hundred and forty-four (98%) had known problems and 27% of these had insufficient information available from parents or staff to completely ascertain their health status. In 115 cases the primary problem was intellectual impairment of unknown cause. Down syndrome was the next most common underlying diagnosis (30) followed by autism (24), epilepsy (21) and cerebral palsy (15). The most common secondary diagnoses were asthma (16), congenital heart defects (12), seizures (8) and skin problems (8). Many students required referral for further management both for newly detected problems (64%) and known problems (18%). Parents required counselling and/or discussion on a number of issues for both newly detected problems (66%) and known problems (39%); when counselling had taken place parent and staff concerns had reduced significantly by the time of the follow-up assessment. CONCLUSIONS: This study demonstrated that in those students with known intellectual impairment there were many with other unrecognized health problems and unmet needs. These findings have implications for health services provided to children attending special schools.

Child↗

PubMed2007

Rapid assessment of severe cognitive impairment in individuals with developmental disabilities.

BACKGROUND: Most standardized intelligence tests require more than 1 hour for administration, which is problematic when evaluating individuals with intellectual disabilities and developmental disabilities (IDDD), because a significant proportion of these individuals can not tolerate lengthy evaluations. Furthermore, most standardized intelligence tests are of limited usefulness for individuals with severe cognitive deficits because of floor effects. METHODS: A number of low-difficulty items were selected from standardized tests. A total of 271 participants with profound, severe, moderate and mild levels of cognitive impairment took part in this study. In the formative phase, 68 participants were evaluated with the selected items, and those items that differentiated between levels of cognitive impairment were retained in the battery. The instrument was then modified and standardized with an additional 203 participants. RESULTS: The instrument, referred to as the Rapid Assessment for Developmental Disabilities (RADD), required 10-25 min for administration. Internal reliability estimates from the RADD total score and from individual subtests satisfied conventional and rigorous statistical criteria (median alpha r = 0.93). The RADD total score was strongly correlated with the level of cognitive impairment (rho = 0.86). The RADD total score and individual subtests differentiated between all levels of cognitive impairment ( Wilks Lambda = 0.135, F(42,525.832) = 12.075, P < 0.001). Receiver operating characteristic curves indicated the instrument was particularly sensitive to the cognitive abilities of the most seriously impaired participants. CONCLUSIONS: The RADD, composed of low-difficulty items from published tests, is rapidly administered, assesses a wide range of cognitive skills and differentiates among all levels of cognitive impairment. The battery has clinical utility with populations exhibiting short attention spans because of its ability to quickly assess a wide range of cognitive abilities. The RADD also has research potential for the documentation of cognitive function in studies of individuals with IDDD.

Adolescent↗

PubMed2004

Status of end of life care in organizations providing services for older people with a developmental disability.

Volunteers of America conducted a national survey of directors of 500 organizations providing services to older people with an intellectual disability in order to establish a baseline for assessing current status of end of life care. The questionnaire contained 56 questions. The return rate was 32% (N = 160). Data analysis provided an overview of organizational needs, resource allocations, end of life care services currently provided, obstacles to care, methods for monitoring such care, and existing and recommended strategies for improving this care. Results underscored the needs for practical guidelines and resources, increased staffing and training, and policy-level reduction of obstacles to promote improved end of life care.

Aged↗

PubMed1996

Research into the lifeworld of physically disabled children.

This article presents a phenomenological study of the experiences of physically disabled children. The research focuses on elementary school aged children not suffering from additional intellectual disability. In previous research we noticed just how often the children we observed are considered and discussed from the point of view of professional expertise. There is, for instance, the medical account of the disorder, the paramedical view concerning the treatment of the physical limitations and the educational and psychological approach to learning disabilities. Our research aims to highlight the perspective of the disabled child him- or herself. We let the children speak for themselves on their three 'favourite' subjects: on their bodies, on friends and on parents and experts.

Activities of Daily Living↗

PubMedDate not supplied

Authors' institutional affiliations in Australian intellectual and developmental disabilities journals: a comparison of two decades.

The generation of new knowledge through research can contribute significantly to the improvement of services for individuals with intellectual and developmental disabilities. This study extends a previous study by Sigafoos, Roberts, and Couzens [Aust. N.Z. J. Dev. Disabil. 17 (1991) 331] by examining research productivity in intellectual and developmental disability in Australian journals for 1990-1999. Institutions that published research articles on intellectual and developmental disabilities in Australian journals in the 1990s were identified by noting the affiliations of authors. The most productive institutions were primarily universities in Australia and the United States of America. Publication trends in the decade of the 1990s are compared with trends of the previous decade (1980-1990).

Australia↗

PubMedDate not supplied

Use of microswitches and speech output systems with people with severe/profound intellectual or multiple disabilities: a literature review.

Microswitches and speech output systems are two forms of technology which have been used with people with severe/profound intellectual or multiple disabilities to help them reduce their isolation and interact with the surrounding world (i.e., thus obtaining environmental stimulation independently or requesting it efficiently). This paper reviews the studies which used microswitches and speech output systems with the aforementioned people during the 1986-1999 period, and discusses the research findings and the practicality of these two forms of technology. Some relevant issues for future research are also pointed out.

Communication Devices for People with Disabilities↗

PubMed2000

Reliability and validity of the CANDID--a needs assessment instrument for adults with learning disabilities and mental health problems.

BACKGROUND: People with learning disabilities and mental health problems have complex needs. Care should be provided according to need. AIM: To develop a standardised needs-assessment instrument for adults with learning disabilities and mental health problems. METHOD: The Camberwell Assessment of Need for Adults with Developmental and Intellectual Disabilities (CANDID) was developed by modifying the Camberwell Assessment of Need (CAN). Concurrent validity was tested using the Global Assessment of Functioning (GAF) and the Disability Assessment Schedule (DAS). Test-retest and interrater reliability were investigated using 40 adults with learning disabilities and mental health problems. RESULTS: CANDID scores were significantly correlated with both DAS (P < 0.05) and GAF scores (P < 0.01). Correlation coefficients for interrater reliability were 0.93 (user), 0.90 (career), and 0.97 (staff ratings); for test-retest reliability they were 0.71, 0.69 and 0.86 respectively. Mean interview duration was less than 30 minutes. CONCLUSIONS: The CANDID is a brief, valid and reliable needs assessment instrument for adults with learning disabilities and mental health problems.

Adult↗

PubMed1998

[What change was caused under short-time treatment by the Ueda method for severely disabled infants with cerebral palsy? Report of two cases].

A new physical therapy, Ueda method (UM), were performed on two patients with severe motor and intellectual disabilities syndrome and spastic cerebral palsy (CP). The period of the UM therapy was 5 days in one case with spastic CP and 10 days in another case with rigo-spastic CP. They showed the remarkable reduction of abnormal muscle tone and interesting phenomena such as postural changes of extremities and changes of some primitive reflexes. First, peculiar postures of treated extremities appeared on the first day of the UM therapy, associated with the reducing muscle tone of extremities only in the treated side. One case showed immediate change of the posture of treated upper extremity from internal to external rotation of the shoulder joint. Another case disclosed immediate appearance of internal rotation of the hip joint of the treated lower extremity and scissoring posture of legs. These phenomena were transient and disappeared under the UM treatment. Secondly, interesting phenomena in some primitive reflexes were observed after the beginning of the UM therapy. Moro reflex was elicited only in the treated upper extremity, which could not be obtained by stimuli before the UM therapy. After the UM therapy on bilateral arms. Moro reflex appeared bilaterally in two cases. On the other hand, the degree of asymmetrical tonic neck reflex (ATNR) in one case with spastic CP reduced on 5th days under the UM therapy. In another case with rigo-spastic CP automatic walking disappeared on 3rd days after the UM therapy and ATNR appeared. The first phenomena could be due to imbalances of the reduced muscle tones by the UM therapy. Second phenomena could result from the interaction between the nervous systems of Moro reflex, ATNR and automatic walking and the nervous system owing to the abnormal muscle hypertone. Moro reflex might be suppressed by abnormal muscle hypertone. The disappearance of some primitive reflexes might not depend on the maturation of the central nervous system.

Cerebral Palsy↗

PubMed2001

Prevention of disability on grounds of suffering.

This paper examines one particular justification for the screening and termination of embryos/fetuses which possess genetic features known to cause disability. The particular case is that put forward in several places by John Harris. He argues that the obligation to prevent needless suffering justifies the prevention of the births of disabled neonates. The paper begins by rehearsing Harris's case. Then, drawing upon claims advanced in a recent paper in the Journal of Medical Ethics, it is subjected to critical scrutiny, focusing on Harris's "suffering claim" (the claim that a life with disability inevitably involves suffering on a significant scale).(1) It is argued that the suffering claim must be false if understood as an empirical claim. And, even if understood as a conceptual truth, it mistakenly assimilates the concepts of harm and suffering. Finally, again focusing on Harris's recent work in this area, his characterisation of disability as a "harmed condition" is shown not to apply in the case of at least some moderate forms of intellectual disability.

Abortion, Induced↗

PubMed1997

[Localized lesions on MRI in the globus pallidus, subthalamic nuclei and hippocampus in patients with severe intellectual and motor disabilities].

We examined the clinical picture of eight patients with severe intellectual and motor disabilities, who had experienced prolonged and severe neonatal jaundice, and showed localized lesions in the globus pallidus, subthalamic nuclei and hippocampus on MRI. All patients had athetoid tetraplegia, and five patients showed disturbed ocular movements and seven showed dysphagia. Five patients could communicate with others or utter words, and all showed mental retardation. Auditory brainstem responses were abnormal in seven, and the percentage of REM sleep on all-night polysomnography was reduced in three. Neither CT nor T1-weighted MR images could detect any changes in the pallidum or subthalamic nuclei, while T2-weighted MR images disclosed bilateral high signals in the pallidum, especially in the internal segment, in all patients. Five of the 7 patients, in whom coronal T2-weighted MR imagings were obtained, showed high signals in the subthalamic nuclei. The hippocampus showed atrophy and/or T2-prolongation in seven patients. In one autopsy case, these MRI changes were concordant with pathological lesions. In patients with athetoid cerebral palsy, brainstem dysfunctions, and abnormal ABR, localization of MRI lesions to the pallidum and subthalamic nuclei is evidence for neonatal bilirubin encephalopathy.

Adult↗

PubMed1991

The post-school experiences of young people with a disability.

The transition of young people with disabilities from school to work and adult living has been the focus of attention for the Centre for Educational Research and Innovation (CERI) of OECD for some years. Various member countries of OECD have implemented transition education programmes as a result of community-based educational policies for students with disabilities. To establish a baseline of the post-school experiences of disabled students a follow-up study of a sample of ex-students in New South Wales, Australia, was conducted. While the responses to the survey came essentially from students who had been in special schools and hence may be unrepresentative of the total population of disabled ex-students, the data indicate some interesting trends. Only 42% were in open employment. Those with a moderate or severe intellectual disability were generally in sheltered workshops, activity centres or at home. The majority of respondents indicated that work was an important part of their lives, not so much from an economic perspective, but especially as it afforded them a social outlet. The implications of the findings are discussed in the context of the current emphasis upon community-based rather than sheltered employment for people with disabilities.

Adaptation, Psychological↗

PubMed2001

Speech disorder in children with Down's syndrome.

The speech of children with Down's syndrome (DS) is often unintelligible, unlike many other children who have an intellectual disability. However, the nature of their speech disorder is controversial. The speech error patterns of children with DS were compared to those of intellectually average children with phonological disorder whose errors were characterized by inconsistency. The groups were matched for percentages of consonants produced in error. The data revealed no differences between the groups in terms of the number of words which were produced inconsistently on repeated productions in a picture-naming task. However, further analyses revealed differences in the type of errors made by the groups in that the children with phonological disorder characterized by inconsistent errors made more changes to words on repeated production than the group with DS. The deficits underlying inconsistent pronunciation of words in the two groups of children under investigation would appear to differ. Intervention strategies should target the deficits identified.

Adolescent↗