Identifying the needs of parents with learning disabilities: A review

Despite the success of some programmes in raising the parental competency of parents who have learning disabilities, many services are still providing only minimal support to such families, often following crisis intervention. Recent legislative changes within the UK have meant that statutory services are now required to adopt a preventative approach to children and families in need. A review of the literature reveals that children of learning-disabled parents are particularly vulnerable to abuse/neglect and removal from their natural family. This article addresses the difficulties that many clinicians currently experience in the early identification of parents who have learning disabilities. It also emphasizes the need for a systematic approach in the assessment of these parents prior to the implementation of parental teaching programmes.     

Social capital, social inclusion and services for people with learning disabilities

Both social capital and social inclusion have emerged as significant concepts for human services in the last decade and yet their inter-relationship remains largely unexplored. This article argues that, whilst they are similar in their vision for a healthy society, they adopt sufficiently different perspectives to stimulate and challenge each other. This can be well illustrated by reference to services for people with a learning disability. Commissioners and providers of learning disability services are encouraged through this article to harness both concepts in order to assist in the process of modernizing services and increasing life opportunities for the people they support. It is argued that it is not possible to understand the full consequences of adopting either theoretical position without an adequate understanding of the other. Examples are given of the implications of this for advocacy services, day opportunities, rural communities, transition and staff training.     

Reassessing the developmental needs of children with learning disabilities: Programmatic implications

The complex growth patterns of children with learning disabilities place them at significant emotional and social risk in interpersonal, family, and institutional relationships. Programmatic interventions that address specific ego functions as well as an approach to a remedial and preventive program design to strengthen social and interactional skills are explored. The author proposes a program design to pair schools with community centers in order to provide opportunities for developing these skills.A version of this article was presented at the NASW School Social Work Conference, New Orleans, LA, January 31-February 3, 1985.     

Promoting choice and control in residential services for people with learning disabilities

This paper discusses the gap between policy goals and practice in residential services for people with learning disabilities. Drawing on a nine month ethnographic study of three residential services, it outlines a range of obstacles to the promotion of choice and control that were routinely observed in the culture and working practices of the services. Issues discussed include conflicting service values and agendas, inspection regimes, an attention to the bigger decisions in a person's life when empowerment could more quickly and effectively be promoted at the level of everyday practice, problems of communication and interpretation and the pervasiveness of teaching. We offer a range of suggestions as to how these obstacles might be tackled.     

Children with emotional disabilities: Perceptions of siblings

This paper reports the process and findings of a study of siblings of children with emotional disabilities. The intent of the research was to engage in an exploratory study through the use of a focus group to gain a preliminary understanding of the perceptions siblings have of a brother or sister with an emotional disability and the service system. Recommendations are given to mental health professionals for working with families and siblings of children with emotional disabilities. Ideas for including siblings in working with family systems are presented.     

International Ethical Safeguards: genetics and people with learning disabilities

This paper discusses the ethical issues and international standards relating to genetic research on people with learning disabilities. Research protocols must acknowledge the people who are subjects of such research and must reflect emerging disability philosophies. This research provides a brief historical context and considers five issues of fundamental importance to people with learning disabilities through a discussion of participation in the research design, independent advocacy, justice, non-discrimination and autonomy. These concerns have been investigated in England and abroad, and it is therefore valuable to undertake a review of the legal and ethical context of genetic research for vulnerable people who may be deemed unable to provide consent.     

Vulnerability in custody: perceptions and practices of police officers and criminal justice professionals in meeting the communication needs of offenders with learning disabilities and learning difficulties

Information provision and communication within the Criminal Justice System can be highly problematic for young people and adults with learning disabilities and difficulties. Paper-based communication is common, and is mandated for the provision of rights and entitlements in custody, but such communication can be poorly understood, potentially leading to miscarriages of justice. This article uses the piloting of a more accessible version of the rights and entitlements notice in custody to explore the communication practices with vulnerable detained persons from the perspectives of professionals within the Criminal Justice System. As a legally mandated text in a context heavily imbued with organisational power, the rights and entitlements notice in custody has sociological significance as a lens through which organisational practices, and understandings, can be examined. The stressful, fast-paced and transitional context of custody shapes communication and interaction in ways that are challenging for the detained person and also the professionals who support them.     

Understanding communities today: using matching needs and services to assess community needs and design community-based services

Matching Needs and Services (MNS) is a practice tool intended to help people who work with vulnerable children use rigorously assembled information on needs as a guide to design, implement, and evaluate more-effective services. To do this, MNS focuses on needs but links them to outcomes and thresholds before dealing with the services to achieve those outcomes.     

Promoting effective working with parents with learning disabilities

The children of parents with learning disabilities are increasingly coming to the attention of child protection and children in need services. The current framework within which services are delivered identi?es the need to work cooperatively both across agencies and with parents themselves. The decisions taken by practitioners in the course of their assessment and support work should be in?uenced by a recognition of where the risks to this group of children lie and which factors are most likely to be associated with positive outcomes. This paper outlines risks to children associated with the parents' dif?culty in accessing appropriate antenatal care and the risk of developmental delay arising from both genetic and environmental in?uences. This group of children are also more likely to experience behaviour problems and language delay. Research has indicated a risk of neglect, but abuse, where it does occur, is more likely to be associated with partners or relatives. It is also clear that some children are more at risk than others, and intellectually able children, as well as those with high levels of dependency, may be the most vulnerable. Risks can be reduced when parents have access to good family and social support networks and professional support which is acceptable to them. Maintaining a small family size can also be helpful. If parents have had positive childhood emotional experiences, their chances of successful parenting are increased. Copyright © 2004 John Wiley & Sons, Ltd.     

Unmet health care needs of people with disabilities: population level evidence

The present study examined population level data on unmet needs for adults with physical, sensory and cognitive disabilities, using the National Population Health Survey. The study revealed that disabled adults (aged 20–64) reported more than three times as many unmet health care needs as their non‐disabled counterparts. Even after controlling for the effects of age, gender and poor health, disability had a significant effect on the perception of unmet needs, particularly disabilities associated with pain, hearing impairment and emotional problems. The greatest deterrent to receiving needed services among individuals with disabilities was cost. Despite being publicly funded and thereby presumably equally accessible to all, the health care system in Canada fails to meet the needs of some of its most vulnerable constituents – adults with disabilities.     

Post-adoption needs of families adopting children with developmental disabilities

The post-adoption service use and needs of 125 families who had adopted children with developmental disabilities were examined using a structured mail questionnaire. Although satisfaction with services used was generally high, many families did not have access to basic family support services such as respite care, life planning and support groups. Income was the only demographic variable which correlated with service need. Middle income families (mean = $30,000 to $34,999) were more likely to need support groups and babysitting for other children than either lower or higher income groups. Of particular note in this study is the relatively high incidence of transracial adoptions. Thirty-one percent of the sample had adopted children of a different race than the family. The implications of the findings and service recommendations are discussed.     

Assessing parents with learning disabilities: The parental skills model

Definitions of what constitutes adequate or inadequate parenting continue to be unclear. Not surprisingly, professionals who are required to formulate opinions regarding parental competency often experience difficulties with this task. These difficulties are further compounded when the assessment involves parents with learning disabilities. They comprise a heterogeneous population many of whom have varying deficits and skills. The Parental Skills Model outlined in this paper is offered as a guide to professionals in their assessment of such parents. The model focuses on three primary areas which have been identified as crucial to parenting, namely, parents' life skills, familial history and access to support/resources. When difficulties are encountered by parents with learning disabilities in any of these three areas it appears to have a direct and indirect effect on the child's care and development. A model of good practice is proposed and illustrated with a case study.     

Citizens with learning disabilities and the right to vote

This paper asks, in the context of recent legislative changes, what can be done to support more citizens in England and Wales with learning disabilities to vote in national elections? This issue is addressed through (i) a review of recent disability access campaigns that have reported discrimination against, and the under‐representation of, adults with disabilities in UK elections; (ii) a review of recent research undertaken in the USA into the assessment of competence to vote and research undertaken in England that conclusively documents the under‐representation of voters with learning disabilities in the 2005 general election. It is proposed that a ‘functional approach’ to developing an individual's capacity to vote could help to fulfil Article 29 of the United Nations' Convention on the rights of persons with disabilities that gives all people the same political rights.     

Inclusive education services for children and youth with disabilities: Values,roles and challenges of school leaders

Implementing inclusive education requires significant changes to values, systems, and practices. Hong Kong began to implement the inclusive education policy on the basis of voluntary participation in 1997. The government later launched a school partnership scheme, under which schools with proficient practices in whole-school approach to inclusive education were invited to serve as resource schools to support other schools. Data on what has led school leaders to join the reform under the policy of voluntary participation and how they tackle problems during implementation cannot be located. Thus, the purpose of this qualitative study is to uncover the reasons for school leaders' decision to participate in and what they did to facilitate the school wide effort to practice inclusive education, as well as challenges encountered. Key findings included Christianity and Confucianism as the prime reasons for practicing inclusive education, partnership with teachers and a shared vision as the key to successful implementation, and a competitive education system together with inadequate resources and teacher training as the main challenges. Recommendations consist of incorporating value development and building relationships with stakeholders in principal training programs, integrating knowledge and skills for inclusive education into the pre- and in-service teacher training programs, and appropriating resources with increased stability and autonomy.     

Children with disabilities in out-of-home care: Perspectives on organisational collaborations

Many contemporary support services for children and young people (CYP) in out-of-home-care have adopted a collaborative approach to service provision in order to best meet the complex needs of clients. The purpose of this study was to gain a better understanding of the perceptions of Evolve Behaviour Support Services (EBSS) frontline and managerial staff delivering services to CYP in out-of-home-care with disability and complex behaviours regarding interagency/stakeholder collaboration. Views about the number and nature of collaborative partnerships, factors which facilitate or hinder effective relationships and advantages (including unintended benefits) of collaboration were sought. Qualitative interviews with 21 participants highlighted issues around: (1) general and agency/stakeholder specific issues and barriers, and (2) benefits of collaboration. The collaborative approach to service provision was seen as greatly enhancing the effectiveness of EBSS' response and ability to meet the range of CYP's complex needs, as well as having benefits for carers and service providers. Nevertheless, difficulties with collaboration were also encountered. Frequently identified challenges included reduced stakeholder engagement, differences in professional backgrounds and practice frameworks, unequal initiation of contact and follow-up, organisational disparities, communication and information sharing problems, frequent stakeholder turnover and geographical barriers in rural/remote areas.     

Children with disabilities and chronic conditions and longer-term parental health

This paper uses panel data from the Statistics Canada National Longitudinal Survey of Children and Youth (1994–2000) to study the implications of parenting a child with a disability or chronic condition for subjective assessments of parental health. We find mother's health to be negatively affected, particularly if the disability is longer-term. Within families, the wife's health deteriorates relative to her husband's when they are parenting a child with a disability. These results are consistent with Akerlof and Kranton's [Akerlof, G., Kranton, R., 2000. Economics and identity. The Quarterly Journal of Economics 105(3), 715–753] arguments that ‘identity’ is an important determinant of both behaviour and well-being. For parents of children with disabilities, the behaviour associated with a traditional ‘good mother’ identity (e.g., care-giving) appears to have more adverse health consequences than the behaviour associated with a ‘good father’ identity (e.g., breadwinning).