Communication in Individuals with Rett Syndrome: an Assessment of Forms and Functions

In the present study we assessed the forms and functions of prelinguistic communicative behaviors for 120 children and adults with Rett syndrome using the Inventory of Potential Communicative Acts (IPCA) (Sigafoos et al. Communication Disorders Quarterly 21:77–86, 2000a). Informants completed the IPCA and the results were analysed to provide a systematic inventory and objective description of the communicative forms and functions present in each individual’s repertoire. Results show that respondents reported a wide variety of communicative forms and functions. By far most girls used prelinguistic communicative behaviors of which eye contact/gazing was the most common form. The most often endorsed communicative functions were social convention, commenting, answering, requesting and choice-making. Problematic topographies (e.g., self-injury, screaming, non-compliance) were being used for communicative purposes in 10 to 41% of the sample. Exploratory analyses revealed that several communicative forms and functions were related to living environment, presence/absence of epilepsy, and age. That is, higher percentages of girls who showed some forms/functions were found in those who lived at home, who had no epilepsy and who were relatively young

Educational Priorities for Children with Cri-Du-Chat Syndrome

There are few data on the educational needs of children with cri-du-chat syndrome: a neurodevelopmental disorder that affects learning and development. We therefore designed an Internet survey to identify parents’ educational priorities in relation to children’s level of need/ability. The survey listed 54 skills/behaviors (e.g., toileting, expresses wants and needs, and tantrums) representing 10 adaptive behavior domains (e.g., self-care, communication, and problem behavior). Parents rated their child’s current level of ability/performance with respect to each skill/behavior and indicated the extent to which training/treatment was a priority. Fifty-four surveys were completed during the 3-month data collection period. Parents identified nine high priority skills/behaviors. Results supported the view that parent priorities are often based on the child’s deficits and emergent skills, rather than on child strengths. Implications for educational practice include the need for competence to develop high priority skills/behaviors and the value of assessing children’s deficits and emergent skills to inform the content of individualized education plans

The impact of LASPO on routes to justice

This research underlines the emotional, social, financial and mental health impacts for individuals who have attempted to resolve their legal problems without legal aid, following the implementation of the Legal Aid, Sentencing and Punishment of Offenders Act (LASPO) in 2013. LASPO introduced funding cuts to legal aid and narrowed the scope and financial eligibility criteria, with the result that fewer people could access legal advice and representation for problems in areas such as family, employment and welfare benefits law. We interviewed over 100 people in the Liverpool City Region, with problems in at least one of these areas of law, to understand how LASPO had affected their options for resolving those issues. We also interviewed a number of advice providers and legal aid practitioners, and analysed national data from Citizens Advice. Many participants reported significant financial deprivation as a result of trying but not being able to resolve their legal issues. Some were unable to afford food, adequate housing or other essentials. A lack of preventive legal help led to delays in resolution, which often made problems worse. There was also evidence that costs were passed to other parts of the public sector, including an increased reliance on welfare benefits as a result of unresolved employment issues. Family law • The high cost of legal fees is a key barrier to justice. Some participants who paid for legal advice or representation reported going into debt as a result. • People’s inability to pay for expert or specialist evidence without legal aid may have led to courts making decisions on the basis of insufficient information. • Cuts to legal aid have had a negative impact on children’s lives, especially in relation to child contact cases. Employment law • The main barriers to justice are the high cost of legal representation, the difficulty of navigating the tribunal process without support and a low level of knowledge about employment rights. • Many participants reported that the costs of bringing their claims to tribunal were disproportionate to the value of the claims. This deterred them from bringing claims and made it harder to find a solicitor willing to take their case. • Participants had fewer options for accessing third-sector specialist advice and representation. Those participants who went to tribunal had to represent themselves as a result, and in general they lacked the skills or experience to do this competently. Welfare benefits law • LASPO has significantly reduced the capacity of voluntary sector organisations to provide welfare law advice. There is almost no specialist advice left to provide support to appeal benefits decisions. • The removal of welfare benefits law from the scope of legal aid has exacerbated the impact of recent welfare reforms, which is likely to have affected disabled people disproportionately. Most participants tried multiple routes to resolve a single issue: attempting to resolve problems on their own, trying to access free advice and taking steps to get paid advice or representation before courts or tribunals. But without legal aid, almost all the participants struggled to solve their problems

The Impact of LASPO on Routes to Justice

This research underlines the emotional, social, financial and mental health impacts for individuals who have attempted to resolve their legal problems without legal aid, following the implementation of the Legal Aid, Sentencing and Punishment of Offenders Act (LASPO) in 2013. LASPO introduced funding cuts to legal aid and narrowed the scope and financial eligibility criteria, with the result that fewer people could access legal advice and representation for problems in areas such as family, employment and welfare benefits law. We interviewed over 100 people in the Liverpool City Region, with problems in at least one of these areas of law, to understand how LASPO had affected their options for resolving those issues. We also interviewed a number of advice providers and legal aid practitioners, and analysed national data from Citizens Advice. Many participants reported significant financial deprivation as a result of trying but not being able to resolve their legal issues. Some were unable to afford food, adequate housing or other essentials. A lack of preventive legal help led to delays in resolution, which often made problems worse. There was also evidence that costs were passed to other parts of the public sector, including an increased reliance on welfare benefits as a result of unresolved employment issues. Family law • The high cost of legal fees is a key barrier to justice. Some participants who paid for legal advice or representation reported going into debt as a result. • People’s inability to pay for expert or specialist evidence without legal aid may have led to courts making decisions on the basis of insufficient information. • Cuts to legal aid have had a negative impact on children’s lives, especially in relation to child contact cases. Employment law • The main barriers to justice are the high cost of legal representation, the difficulty of navigating the tribunal process without support and a low level of knowledge about employment rights. • Many participants reported that the costs of bringing their claims to tribunal were disproportionate to the value of the claims. This deterred them from bringing claims and made it harder to find a solicitor willing to take their case. • Participants had fewer options for accessing third-sector specialist advice and representation. Those participants who went to tribunal had to represent themselves as a result, and in general they lacked the skills or experience to do this competently. Welfare benefits law • LASPO has significantly reduced the capacity of voluntary sector organisations to provide welfare law advice. There is almost no specialist advice left to provide support to appeal benefits decisions. • The removal of welfare benefits law from the scope of legal aid has exacerbated the impact of recent welfare reforms, which is likely to have affected disabled people disproportionately. Most participants tried multiple routes to resolve a single issue: attempting to resolve problems on their own, trying to access free advice and taking steps to get paid advice or representation before courts or tribunals. But without legal aid, almost all the participants struggled to solve their problems

Enhancing staff attitudes, knowledge and skills in supporting the self-determination of adults with intellectual disability in residential settings in Hong Kong: A pretest-posttest comparison group design

Background: The ecological perspective recognizes the critical role that is played by rehabilitation personnel in helping people with intellectual disability (ID) to exercise self-determination, particularly in residential settings. In Hong Kong, the authors developed the first staff training programme of its kind to strengthen the competence of personnel in this area. The purpose of this study was to examine the effectiveness of staff training in enhancing residential staff's attitudes, knowledge and facilitation skills in assisting residents with ID to exercise self-determination. Methods: A pretest-posttest comparison group design was adopted. Thirty-two participants in an experimental group attended a six-session staff training programme. A 34-item self-constructed scale was designed and used for measuring the effectiveness of the staff training. Results: The results showed that the experimental group achieved statistically significant positive changes in all domains, whereas no significant changes were found in the comparison group. Conclusions: The findings provided initial evidence of the effectiveness of staff training that uses an interactional attitude-knowledge-skills model for Chinese rehabilitation personnel. The factors that contributed to its effectiveness were discussed and recommendations for future research were made. © Journal Compilation © 2007 Blackwell Publishing Ltd.postprin

Incontinence in Individuals with Rett Syndrome: A Comparative Study

Frequency and type of incontinence and its association with other variables were assessed in females with Rett Syndrome (RS) (n = 63), using an adapted Dutch version of the ‘Parental Questionnaire: Enuresis/Urinary Incontinence’ (Beetz et al. 1994). Also, incontinence in RS was compared to a control group consisting of females with non-specific (mixed) intellectual disability (n = 26). Urinary incontinence (UI) (i.e., daytime incontinence and nocturnal enuresis) and faecal incontinence (FI) were found to be common problems among females with RS that occur in a high frequency of days/nights. UI and FI were mostly primary in nature and occur independent of participants’ age and level of adaptive functioning. Solid stool, lower urinary tract symptoms and urinary tract infections (UTI’s) were also common problems in females with RS. No differences in incontinence between RS and the control group were found, except for solid stool that was more common in RS than in the control group. It is concluded that incontinence is not part of the behavioural phenotype of RS, but that there is an increased risk for solid stool in females with RS

Aggression in Low Functioning Children and Adolescents with Autistic Disorder

BACKGROUND: Parents, caregivers and mental health professionals have often reported violence and aggression in children or adolescents with autistic disorder. However, most of these observations derived from anecdotal reports, and studies on frequency and characterization of aggression in autism remain limited. Our objective was to better characterize and understand the different types of aggressive behaviors displayed by a large group of individuals with autism in different observational situations. METHODOLOGY/FINDINGS: The study was conducted on 74 children and adolescents with autism and 115 typically developing control individuals matched for sex, age and pubertal stage. Other-Injurious Behaviors (OIB) were assessed in three observational situations (parents at home, two caregivers at day-care, a nurse and a child psychiatrist during blood drawing) using validated scales. The frequency of OIB was significantly higher in individuals with autism compared to typically developing control individuals during the blood drawing (23% vs. 0%, P<0 .01). The parents observed significantly less OIB in their children than caregivers (34% vs. 58%, P<0.05). In addition, the most frequent concurrent behaviors occurring just before the appearance of OIB in individuals with autism were anxiety-related behaviors and excitation according to the parental as well as the caregiver observation. CONCLUSIONS/SIGNIFICANCE: The results suggest that in a stressful situation, such as the blood drawing, individuals with autism release their stress through behaviors such as OIB, whereas typically developing individuals regulate and express their stress through cognitive skills such as mental coping strategies, symbolization skills with representation and anticipation of the stressful situation, social interaction and verbal or non-verbal communication. The findings underline also the key role of the environment in assessing OIB and developing therapeutic perspectives, with an individual who modulates his/her behavior according to the environment, and an environment that perceives this behavior and reacts to it with different tolerance thresholds according to the observers

Are Children with Autism Spectrum Disorder Initially Attuned to Object Function Rather Than Shape for Word Learning?

We investigate the function bias-generalising words to objects with the same function-in typically developing (TD) children, children with autism spectrum disorder (ASD) and children with other developmental disorders. Across four trials, a novel object was named and its function was described and demonstrated. Children then selected the other referent from a shape match (same shape, different function) and function match (same function, different shape) object. TD children and children with ASD were 'function biased', although further investigation established that having a higher VMA facilitated function bias understanding in TD children, but having a lower VMA facilitated function bias understanding in children with ASD. This suggests that children with ASD are initially attuned to object function, not shape