Journal of Policy and Practice in Intellectual Disabilities via MedWorm.com

IASSID Council Meeting

Journal of Policy and Practice in Intellectual Disabilities — Thu, 01 Dec 2011 05:00:00 +0100

(Source: Journal of Policy and Practice in Intellectual Disabilities)

Mental Health Services for Adults with Intellectual Disability Strategies and Solutions

Journal of Policy and Practice in Intellectual Disabilities — Thu, 01 Dec 2011 05:00:00 +0100

(Source: Journal of Policy and Practice in Intellectual Disabilities)

World Report on Disability

Journal of Policy and Practice in Intellectual Disabilities — Thu, 01 Dec 2011 05:00:00 +0100

(Source: Journal of Policy and Practice in Intellectual Disabilities)

A Demonstration of Helping Adolescents With Mild Intellectual Disability Climb Ladders

Journal of Policy and Practice in Intellectual Disabilities — Thu, 01 Dec 2011 05:00:00 +0100

AbstractA research team at a vocational school in Singapore, catering mainly to students between the ages of 17–21 with mild intellectual disability, studied how to best address the challenge of enabling students to learn how to climb ladders (a skill necessary at many job placements). They documented the approach used and suggested extrapolations and scalability for similar problems. An exploratory approach was adopted for tackling the training program. The students in the study with motor or anxiety issues required shorter periods of intervention, and prognosis of success in intervention was higher compared with students with a history of fear or phobic experiences. Mapping the process helped enhance the understanding of the support and intervention modality needed by occupational ther...

Definitions Matter in Understanding Social Inclusion

Journal of Policy and Practice in Intellectual Disabilities — Thu, 01 Dec 2011 05:00:00 +0100

This study aims to better understand the concept and indicators of social inclusion. Retrospective analyses were conducted on 1,341 adults with intellectual disabilities residing in institutional and community‐based settings who were assessed with the “interRAI Intellectual Disability” instrument. Objective and subjective items in the instrument related to five domains of social inclusion (i.e., relationships, leisure, productive activities, accommodations, and informal support). The results highlighted the heterogeneity within domains, and by the nature of the indicator. Overall, percentages varied between 3.0% and 96.4% depending on which indicator was used; variability also existed in rates achieved using objective and subjective indicators. Acceptable‐to‐good levels of intern...

Challenging Behavior Training for Teaching Staff and Family Carers of Children With Intellectual Disabilities: A Preliminary Evaluation

Journal of Policy and Practice in Intellectual Disabilities — Thu, 01 Dec 2011 05:00:00 +0100

AbstractTraining programs on the topic of challenging behaviors have often been offered to teaching staff and family carers of children with intellectual disabilities (ID). These efforts have been found to be effective in bringing about positive changes for both children with ID and those who support them. Generally, such training has been offered to either staff or family carers but not at the same time. The authors conducted a study to evaluate the efficacy of a brief training program delivered at the same time to teaching staff and family carers (who were involved with the same child). The study also examined differences in outcomes between the two groups, which were drawn from local schools where some children exhibited challenging behaviors. Both teaching staff and family carers compl...

Deinstitutionalization and Quality of Life of Individuals With Intellectual Disability: A Review of the International Literature

Journal of Policy and Practice in Intellectual Disabilities — Thu, 01 Dec 2011 05:00:00 +0100

AbstractThe policy of deinstitutionalization was based on the proposition that quality of life (QoL) of individuals with intellectual disabilities (ID) will improve as a result of being moved from institutions to community‐based care settings. The aim of this literature review was to evaluate whether this assumption has become a reality now that the social policy of deinstitutionalization has progressed in many countries across the globe. A total of 15 studies were examined that assessed QoL as an outcome of community living following deinstitutionalization. Results indicated that relocation had a general positive impact on life quality of participants. However, many of the studies found that improvements were most prominent shortly after the move and plateaued after a year. Also, partic...

Solution‐Focused Brief Therapy With People With Mild Intellectual Disabilities: A Case Series

Journal of Policy and Practice in Intellectual Disabilities — Thu, 01 Dec 2011 05:00:00 +0100

AbstractSolution‐focused brief therapy (SFBT) is a form of behavior therapy that focuses on evoking desired behavior rather than on the existing problem behavior. To illustrate the use of this form of therapy, the authors undertook a study of 10 case studies of applications of SFBT with people with a mild intellectual disability (MID). For all 10 cases, before SFBT, after SFBT, and during a follow‐up after 6 weeks, the following measurements were taken: assessment of quality of life and assessment of maladaptive behavior as well as goal attainment according to people with MID and according to carers. It was found that SFBT treatments contributed to improvements in psychological functioning and decreases in maladaptive behavior. In addition, achievement of goal attainments were noted ac...

Qualitative Study of Malnutrition in People With Intellectual Disabilities

Journal of Policy and Practice in Intellectual Disabilities — Thu, 01 Dec 2011 05:00:00 +0100

AbstractThe prevalence of underweight status is relatively high in persons with intellectual disabilities. However, it is not clear whether this is due to malnourishment. The authors sought to examine the awareness and knowledge of physicians, dieticians, and direct care staff regarding malnutrition in people with intellectual disabilities. They also sought to obtain information about their experience with problems and possible solutions. Semi‐structured interviews were held with a cross‐section of physicians, dieticians, and direct care staff working with people with intellectual disabilities at six different service providers in the Netherlands. Dieticians and physicians noted that malnutrition is prevalent in persons with intellectual disabilities that they see, but they were uncert...

Adults With Intellectual Disabilities Living in Hong Kong's Residential Care Facilities: A Descriptive Analysis of Health and Disease Patterns by Sex, Age, and Presence of Down Syndrome

Journal of Policy and Practice in Intellectual Disabilities — Thu, 01 Dec 2011 05:00:00 +0100

AbstractThe aim of this study was to describe the health status profile and identify the healthcare needs of adults with intellectual disability (ID) residing in 18 of Hong Kong's residential care facilities. The author employed a cross‐sectional study using a structured questionnaire survey to collect data on 811 persons with ID (432 males, 53.3%, and 379 females, 46.7%) with an average age of 44. Of the residents, 107 (13.2%) had Down syndrome, 275 (34%) had epilepsy, and 134 (16.6%) had cerebral palsy. Some 25.4% were underweight and 27.3% were overweight. They had the same illnesses as the general population, but the relative frequencies were different. In terms of prevalence, the top five chronic conditions were epilepsy, hypertension, diabetes mellitus, cataract, and gout (compared...

Self‐Management Abilities of Diabetes in People With an Intellectual Disability Living in New Zealand

Journal of Policy and Practice in Intellectual Disabilities — Thu, 01 Dec 2011 05:00:00 +0100

AbstractSelf‐management of diabetes is encouraged; however, it is not an easy task and requires a good understanding of the disease. To determine how to improve the self‐management abilities of diabetes in people with an intellectual disability (ID), this study explored the knowledge and understanding of diabetes held by a select group of adults with diabetes. The group was made up of 14 adult New Zealanders (eight males and six females; age range 23–69 years) with type 1 diabetes (n = 6) and type 2 diabetes (n = 8). They and their nominated key informants were interviewed. Blood sugar levels (gained from using hemoglobin A1c (HbA1c) tests) were obtained on all participants. HbA1c levels ranged from 5.4% to 12.3%. The participants fell into three categories of understanding d...

Informational Digest Bulletin From San Raffaele Foundation and Tosinvest Sanità (No. 26). Research on Cortical Sources of EEG Rhythms in Dyslexic Children

Journal of Policy and Practice in Intellectual Disabilities — Thu, 01 Sep 2011 04:00:00 +0100

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The Essential Sternberg. Essays on Intelligence, Psychology, and Education

Journal of Policy and Practice in Intellectual Disabilities — Thu, 01 Sep 2011 04:00:00 +0100

(Source: Journal of Policy and Practice in Intellectual Disabilities)

Guest Editorial: Commentary on the World Report on Disability

Journal of Policy and Practice in Intellectual Disabilities — Thu, 01 Sep 2011 04:00:00 +0100

(Source: Journal of Policy and Practice in Intellectual Disabilities)

Assessment of Functional Caregiving in Homes With a Child With an Intellectual Disability

Journal of Policy and Practice in Intellectual Disabilities — Thu, 01 Sep 2011 04:00:00 +0100

AbstractThe authors report on the nature of assessing functional caregiving (FC) via three studies, conducted by a university–public preschool collaboration that was designed to measure mothers' confidence to care for children with intellectual disabilities in their homes. Caregiving of children with intellectual disabilities was conceptualized in terms of a task hierarchy that occurs in a complex, multi‐level sociocultural ecology. Rating scale items were developed to survey mothers' caregiving confidence in this ecology, which were analyzed with a Rasch model. Raw ratings were transformed to an axiomatically strong, objective, unidimensional scale, and the obtained task difficulties conformed to a three‐tier caregiving hierarchy of advocacy, personal caregiving, and community relat...

Friendship and Adults With Profound Intellectual and Multiple Disabilities and English Disability Policy

Journal of Policy and Practice in Intellectual Disabilities — Thu, 01 Sep 2011 04:00:00 +0100

AbstractThe authors analyzed references to “friendship” in the documents that set out the policy vision for adults with intellectual disabilities living in England. Friendship is commonly identified as one of the human “goods”—those aspects of life that contribute to our flourishing. Disability ethicists have suggested that friendship is especially important for people with the most profound intellectual and multiple disabilities, as a means of establishing their social and moral standing. However, the idea of friendship with adults with profound disabilities is problematic if friendship is defined as it is commonly understood in the contemporary English context. Citizenship and rights have dominated policy discourse since the publication of the English intellectual disabilities ...

The Origins of “Best Practices” in the Principle of Normalization and Social Role Valorization

Journal of Policy and Practice in Intellectual Disabilities — Thu, 01 Sep 2011 04:00:00 +0100

AbstractWolfensberger's Social Role Valorization (SRV), and its predecessor, the principle of normalization, are acknowledged as having a major positive impact in human services over the last 30+ years. Some direct service applications, techniques, and approaches derived from SRV (or normalization), or at least concordant with these, have been called “best practices.” However, many human service professionals, recipients, and others who seek out and implement these “best practices” do not acknowledge or perhaps understand their connection/relationship to normalization or SRV. These connections are illustrated through examples of “best practices” in the areas of individualization, autonomy and rights, and relationship supports. Also illustrated are drawbacks to pursuing these co...

Assessing Quality of Life and Mortality in Adults With Intellectual Disability and Complex Health Problems Following Move From a Long‐Stay Hospital

Journal of Policy and Practice in Intellectual Disabilities — Thu, 01 Sep 2011 04:00:00 +0100

AbstractIn response to national policy directives, all residents of long‐stay hospitals for adults with an intellectual disability (ID) in England are now living in the community. The success of community integration can be assessed by measures of relevant factors, such as quality of life and mortality, in those adults who move out of hospital and into community settings. The authors used the Questionnaire on Quality of Life to measure quality of life at baseline (i.e., 6 months prior to moving) and at 6 months and 1 year postrelocation in 51 adults with ID with complex health problems who had moved from a long‐stay hospital into various community supported living accommodations, group residential homes, or nursing homes. Mortality and causes of death were investigated in those who die...

Participation Opportunities for Adults With Intellectual Disabilities Provided by Disability Services in One Australian State

Journal of Policy and Practice in Intellectual Disabilities — Thu, 01 Sep 2011 04:00:00 +0100

AbstractThe participation of service users in the planning and delivery of disability services is an unequivocal ideal in many countries. However, making the shift from espoused ideals of participation to effective, credible involvement of people with disability and families in agency planning and delivery is often challenging and not fully realized. The authors undertook a study to discern the nature and extent of service user participation opportunities within a range of organizations that provide disability services in one Australian state. A “snapshot” of how services are involving service users and their families, carers, and advocates in all aspects of their service, including service planning, development, and delivery, was obtained via a mailed survey instrument. Some 200 agenc...

Supporting Families With Parents With Intellectual Disability: Views and Experiences of Professionals in the Field

Journal of Policy and Practice in Intellectual Disabilities — Thu, 01 Sep 2011 04:00:00 +0100

AbstractProfessionals and parents with intellectual disability often disagree on what support is needed and how it should be provided. Parents report having little say in the matter, feeling coerced into accepting services that they do not find useful. Professionals may describe the parents as difficult to engage and not open to receiving help. The aim of this article was to capture the views and experiences of professionals working with parents with intellectual disabilities. A qualitative analysis of focus group discussions was undertaken. Study participants described their work with client families as fraught with difficulty. Their accounts differed depending on whether the child was living with the parents or the child had been placed in out‐of‐home care. In the first situation, pa...

Respite and Parental Relinquishment of Care: A Comprehensive Review of the Available Literature

Journal of Policy and Practice in Intellectual Disabilities — Thu, 01 Sep 2011 04:00:00 +0100

AbstractA family having to relinquish the care of their family member with a disability is a situation that is often dealt with by disability services. In precipitous situations, the relinquished individual usually is placed in respite care until suitable permanent accommodation is organized or he or she is able to return to the family home. To examine to what extent the literature has discussed the issues associated with the need for urgent respite and how this need may link to relinquishment of care, the authors undertook an extensive review of relinquishment of care. The literature indicated that many families and carers feel that their respite needs are not being met and that certain individual and family characteristics are associated with need for urgent respite (such as severe disab...

Staff Perspectives of Substance Use and Misuse Among Adults With Intellectual Disabilities Enrolled in Dutch Disability Services

Journal of Policy and Practice in Intellectual Disabilities — Thu, 01 Sep 2011 04:00:00 +0100

This study explored the perspectives of staff with respect to the occurrence of substance use and abuse, as well as users' profiles, and service organization policies regarding substance use. A semi‐structured questionnaire asked staff to comment on lifetime, current, and problematic substance use among their clients, provide illustrative case reports, and describe policies within their service regarding substance‐related problems. Data from 39 IDS were included. Estimations of occurrence of substance use varied greatly across services. Alcohol was reported to be used most often but at lower rates than reported in the general population. Cannabis and other drugs were reported to be used relatively often when compared with the rates noted in the general population. Case reports on 86 su...

Mental Health Services for Adults with Intellectual Disability Strategies and Solutions

Journal of Policy and Practice in Intellectual Disabilities — Tue, 31 May 2011 23:00:00 +0100

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Neurogenetic Syndrome: Behavioral Issues and Their Treatment

Journal of Policy and Practice in Intellectual Disabilities — Tue, 31 May 2011 23:00:00 +0100

(Source: Journal of Policy and Practice in Intellectual Disabilities)

The IASSID Academy on Education, Teaching and Research and the Links With Low‐ and Middle‐Income Countries: An International Partnership

Journal of Policy and Practice in Intellectual Disabilities — Tue, 31 May 2011 23:00:00 +0100

This article describes the global context of knowledge dissemination and examples of workshops and courses led by Academy members. Discussed are reflections on the important lessons learnt from the Academy experiences to date and recommendations on better coordinating and delivering Academy‐sponsored trainings and consultations in LAMICs. (Source: Journal of Policy and Practice in Intellectual Disabilities)

Developments in Deinstitutionalization and Community Living in the Czech Republic

Journal of Policy and Practice in Intellectual Disabilities — Tue, 31 May 2011 23:00:00 +0100

AbstractThe Czech national policy on social services and health is based on the principal of human rights and empowerment of persons with disabilities. Based on published literature and reports, as well as knowledge and experience from working in the field, this mainly conceptual article summarizes progress over the past two decades in the Czech Republic in moving from an institutional era toward one that values community‐based alternatives. While European and national policy is supportive of community living, and new individualized funding streams have been created, progress in the Czech Republic toward the goal of community living for everyone with a disability has been slow and has met with many barriers. The authors highlight the need to consider issues such as the availability of da...

Developing a Comprehensive Research Agenda for People With Intellectual Disability to Inform Policy Development and Reform

Journal of Policy and Practice in Intellectual Disabilities — Tue, 31 May 2011 23:00:00 +0100

AbstractGaps in policy and service systems exist for people with intellectual disability (ID). The areas of policy and services research that are required to address this situation are vast, complicated, and often interrelated. Strategically developed research agendas underpinned by a strict adherence to human rights principles can optimally inform policy and service development and reform. A framework to facilitate the conceptualization of a comprehensive and structured research agenda for ID that can underpin policy has been developed. It is informed by templates developed in mental health and health and consists of external parameters and internal domains and elements. It is overarched by human rights principles and takes into account other contextual factors including government polici...

Assessment of Behavioral and Psychiatric Problems in People With Prader–Willi Syndrome: A Review of the Literature

Journal of Policy and Practice in Intellectual Disabilities — Tue, 31 May 2011 23:00:00 +0100

AbstractPrader–Willi syndrome is a complex genetic disorder involving a wide range of behavioral, psychiatric, neurocognitive, and medical problems. A review of existing research was presented to facilitate assessment work with this population. Hyperphagia, compulsions/repetitive behavior, self‐injury (especially skin‐picking), and aggressive behaviors are particularly common in people with Prader–Willi syndrome. Psychotic, affective, and obsessive–compulsive disorders represent the most frequently occurring psychiatric disorders. Assessment should involve consideration of how behavioral and psychiatric problems can be influenced by neurocognitive functioning and medical issues. Research findings in these areas are presented to help clinicians make comprehensive assessment of men...

Additional Support for Individuals With Intellectual Disabilities and Challenging Behaviors in Regions of Northwest Europe

Journal of Policy and Practice in Intellectual Disabilities — Tue, 31 May 2011 23:00:00 +0100

AbstractOne in 10 individuals with intellectual disability (ID) exhibits behaviors that represent a significant challenge to the people who support them. Parents and staff (such as direct support professionals) often are challenged in trying to find a solution to overcome or reduce these behaviors. A form of additional professional support (i.e., external consultative services) can be helpful in managing such challenging behaviors. Yet, there is little knowledge about the use of such “additional support.” As part of a broader study in the Netherlands into the nature of additional support for individuals with ID who manifest challenging behaviors, a study was undertaken to determine if additional professional support in other regions of northwestern Europe occurs and, if so, how was it ...

Utility of Staff Training on Correcting Sleep Problems in People With Intellectual Disabilities Living in Residential Settings

Journal of Policy and Practice in Intellectual Disabilities — Tue, 31 May 2011 23:00:00 +0100

This study examined how to improve the knowledge and understanding of sleep quality and sleep problems in people with ID among care staff at a residential facility and, consequently, to reduce extrinsic sleep problems. Using a variation on a crossover design with two groups, sleep efficiency and sleep latency in people with ID (not suspected of having sleep problems) were measured four times. One group (Group A) of staff was offered a lecture after the first measurement and a workshop after the second one. A second group (Group B) of staff was only offered a lecture, between the second and third measurements. In both groups, sleep efficiency rose significantly. The time spent in bed by residents overseen by Group A was reduced significantly, and there was a significant reduction of daily n...

Promoting Health‐Related Fitness for Elementary Students With Intellectual Disabilities Through a Specifically Designed Activity Program

Journal of Policy and Practice in Intellectual Disabilities — Tue, 31 May 2011 23:00:00 +0100

AbstractThe Motivate, Adapt, and Play Program was specifically designed as an adapted physical activity (PA) program for students with intellectual disabilities (ID) to meet required school PA policies to combat childhood obesity. The policies commonly require a minimum of 30 min of PA per school day. A study was undertaken to test the efficacy of the program. Twenty‐five students with ID (9 girls, 16 boys; ages 9.7 ± 1.2) from four elementary schools in the southeastern United States participated in the study. The health‐related fitness measures of the 16‐m shuttle run test, the modified curl‐up test, and the back‐saver sit‐and‐reach test were completed at the beginning and at the end of an 8‐week period. Body mass index (BMI) measurements were also obtained. During...

Meeting the Needs of Parents in Early Childhood Intervention: The Educational Partnership With Parents—Good Practice and Challenges

Journal of Policy and Practice in Intellectual Disabilities — Tue, 31 May 2011 23:00:00 +0100

AbstractThere is broad conceptual consensus that the effectiveness and efficiency of early childhood intervention (ECI) for vulnerable children is correlated with the active involvement and full participation of parents. This requires a general understanding of each family's needs and desires and specific strategies for determining what each family needs to achieve the outcomes they desire. However, the effect sizes of parent programs or involvement—due to methodological issues and mediator variables—still vary significantly between the programs. The author highlights the importance of shared understanding and shared decision between professionals and parents as a main predictor of high outcome in ECI. (Source: Journal of Policy and Practice in Intellectual Disabilities)

In Memoriam: Wolf Wolfensberger

Journal of Policy and Practice in Intellectual Disabilities — Tue, 31 May 2011 23:00:00 +0100

(Source: Journal of Policy and Practice in Intellectual Disabilities)

Informational Digest Bulletin From San Raffaele Foundation and Tosinvest Sanità (No. 25). A Synopsis of the Presentations Provided by the San Raffaele Research Institute—Tosinvest Group at the 3rd IASSID‐Europe Conference in Rome, Italy

Journal of Policy and Practice in Intellectual Disabilities — Tue, 01 Mar 2011 00:00:00 +0100

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Report of the Director of the IASSID Academy

Journal of Policy and Practice in Intellectual Disabilities — Tue, 01 Mar 2011 00:00:00 +0100

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IASSID Council Minutes

Journal of Policy and Practice in Intellectual Disabilities — Tue, 01 Mar 2011 00:00:00 +0100

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The Program Administrator's Guide to Early Childhood Special Education: Leadership, Development, and Supervision

Journal of Policy and Practice in Intellectual Disabilities — Tue, 01 Mar 2011 00:00:00 +0100

(Source: Journal of Policy and Practice in Intellectual Disabilities)

Transition for Teenagers With Intellectual Disability: Carers' Perspectives

Journal of Policy and Practice in Intellectual Disabilities — Tue, 01 Mar 2011 00:00:00 +0100

AbstractTeenagers with intellectual disabilities (ID) have significantly more health problems than the rest of the population and many encounter difficulties accessing the services they need during the transition from children's to adult services. A multidisciplinary, interagency study was carried out in one area of the UK with the intent to estimate the number of teenagers with ID between the ages of 16 and 19, their levels of mental and physical healthcare needs, their carers' perceptions of the transition process to adult services and unmet needs, and to make recommendations on how to address unmet needs. A mapping exercise was carried out to identify all teenagers aged 16–19 with ID known to local services; a postal questionnaire was sent to carers of all eligible teenagers; and then...

Development and Evaluation of a Staff Training Program on Palliative Care for Persons With Intellectual and Developmental Disabilities

Journal of Policy and Practice in Intellectual Disabilities — Tue, 01 Mar 2011 00:00:00 +0100

AbstractPersons with intellectual and developmental disabilities (I/DD) face barriers and disparities at end of life. Among these barriers are limited educational opportunities and a paucity of targeted training materials on palliative care for staff who provide their day‐to‐day care. This paper reports on a three‐phase project undertaken to develop, implement, and evaluate a palliative care curriculum and educational program that is responsive to the unique learning needs of staff providing services and supports for individuals with I/DD living in long‐term care settings. Participants' ratings of their levels of preparation and confidence to provide palliative care improved from pretraining to posttraining. Posttraining use of materials and practice changes in palliative care occu...

Use of Physical Restraints With People With Intellectual Disabilities Living in Sweden's Group Homes

Journal of Policy and Practice in Intellectual Disabilities — Tue, 01 Mar 2011 00:00:00 +0100

AbstractPeople with intellectual disabilities (ID) often exhibit physical and communicative difficulties as well as challenging behaviors. Physical restraints are one method used to manage challenging behaviors and promote physical safety for people with ID, their fellow residents, and professional carers. However, there is a lack of data regarding the practice of employing physical restraints in Swedish group homes for people with ID. The aim was to investigate the prevalence of physical restraint use in group homes for people with ID, and to identify the characteristics of individuals subjected to these restraints. The study had a cross‐sectional design and included 556 people with ID, aged 16–90 years, living in 118 group homes. Physical restraint use and residents' characteristics ...

Exploring the Effect of Autism Waiver Services on Family Outcomes

Journal of Policy and Practice in Intellectual Disabilities — Tue, 01 Mar 2011 00:00:00 +0100

This study examined the effect of services provided through Maryland's Home and Community‐Based Services Medicaid waiver for children with autism on several outcomes related to families, specifically family quality of life (FQoL) and employment. The purpose of this study was to assess the impact of the services provided through the Maryland autism waiver on families' perceived quality of life by comparing responses of families receiving waiver services in Maryland with families in the same state who were on the registry (i.e., a waiting list) for waiver services. An invitation letter and Internet‐based survey were sent out to 723 waiver recipients and 2,298 families on the wait‐list registry by the state's agency administering the waiver program. Some 861 surveys (229 waiver, 632 reg...

Towards a Framework for Implementing Individual Funding Based on an Australian Case Study

Journal of Policy and Practice in Intellectual Disabilities — Tue, 01 Mar 2011 00:00:00 +0100

AbstractAlthough individual funding is increasingly being used around the globe as a mechanism to fund social care, its implementation is proving to be problematic and implementation strategies are not well developed. This paper proposes a framework for the successful introduction and implementation of individual funding programs based on the analysis of data collected in a qualitative case study conducted in an Australian not‐for‐profit disability agency over a 4‐year period from 2003 to 2007. Data were gathered through participant observation and interviews with program participants and managers, and the findings were validated with those involved. Bronfenbrenner's ecological systems theory is used to analyze the findings from a micro, meso, exo, and macro perspective. The followin...

Day Services for People With Profound Intellectual and Multiple Disabilities: An Analysis of Thematically Organized Activities

Journal of Policy and Practice in Intellectual Disabilities — Tue, 01 Mar 2011 00:00:00 +0100

AbstractOne of the recent ideas to emerge in the Netherlands for improving the quality of activities provided for people with profound intellectual and multiple disabilities is to organize these activities thematically. Among the expected effects was that more activities with a greater variety would be provided and more attention would be offered to each person. A study of 23 attendees was undertaken in one day center to assess the effect of this new program effort. Data were collected on the number, type, and length of activities offered as well as the duration of individual attention each attendee was given during each activity. Data were collected using diary entries made during 20 morning or afternoon sessions over a period of 4 weeks. The average number of activities was well above th...

Adult Careers: Does Childhood IQ Predict Later Life Outcome?

Journal of Policy and Practice in Intellectual Disabilities — Tue, 01 Mar 2011 00:00:00 +0100

AbstractThe author's plenary address at the 3rd International Association for the Scientific Study of Intellectual Disabilities‐Europe Conference in Rome, Italy (October 2010), provided a retrospective overview of a longitudinal study conducted with a cohort of pre‐teens (11 and 13 years of age) residing in Warsaw, Poland, in the 1970s. The intent was to examine, over an extended period of years, the relationship between social origin and measured intelligence (IQ), the role that IQ and other psycho‐social factors play as predictors of social and economic status in adulthood, and the stability of IQ. The question posed by the “Warsaw Studies” was whether, given the virtual absence of educational, health service, and community distinctions (Warsaw in the 1970s was an ideal laborat...

Informational Digest Bulletin From San Raffaele Foundation and Tosinvest Sanità (No. 24). The Organization of an International Course on Human Motor Control at IRCCS San Raffaele Pisana

Journal of Policy and Practice in Intellectual Disabilities — Wed, 01 Dec 2010 00:00:00 +0100

(Source: Journal of Policy and Practice in Intellectual Disabilities)

Activity, Aging, and Retirement: The Views of a Group of Scottish People With Intellectual Disabilities

Journal of Policy and Practice in Intellectual Disabilities — Wed, 01 Dec 2010 00:00:00 +0100

AbstractThe structuring of daytime activities for older people with intellectual disabilities (ID) is often at odds with the views or needs of the people involved with these activities. The aim of this study was to understand the perceptions of people with ID with respect to retirement—that is, the mandatory transition from attending day centers in two Scottish localities. Semi‐structured interviews were conducted with 16 older adults and the resultant transcripts subjected to interpretive phenomenological analysis. Five themes emerged from the analysis: the importance of activity, the day center as a social hub, confusion concerning retirement, desire for continuity, and the value of independence. The older adults placed great value on participation in daytime activity and on attendan...

Models of Disability, Quality of Life, and Individualized Supports: Implications for Professional Practice in Intellectual Disability

Journal of Policy and Practice in Intellectual Disabilities — Wed, 01 Dec 2010 00:00:00 +0100

AbstractIn the past decade, new models have emerged with respect to the constructs of (intellectual) disability, quality of life, and supports. These models have implications both for understanding the underlying phenomena as for validating professional practices. The authors describe the context and key components of models of human functioning (American Association on Intellectual and Development Disabilities; International Classification of Functioning, Disability, and Health), supports, and quality of life, and demonstrate how these are related by synthesizing their similarities and differences. From this they discuss the implications for professional clinical and service good practice. It is argued that these models offer relevant frames of reference for guiding and integrating activi...

Using a Knowledge Translation Lens to Develop International Collaborations to Improve the Health of Individuals With Intellectual Disabilities

Journal of Policy and Practice in Intellectual Disabilities — Wed, 01 Dec 2010 00:00:00 +0100

This report describes the process used at the International Association for the Scientific Study of Intellectual Disabilities Health Issues Special Interest Research Group's 2009 Roundtable to increase awareness of the importance of, and opportunities for, knowledge translation to improve the health of individuals with intellectual disabilities (ID) through international collaboration. The “knowledge‐to‐action cycle” (i.e., knowledge translation) formed the basis for the roundtable discussions. The thematic areas discussed included identification and reduction of disability in adults who also have epilepsy, obesity in children and adults, adapting health promotion materials and approaches, and policy and practice healthcare management—all related to individuals with ID. The topic...

Microenterprise Options for People With Intellectual and Developmental Disabilities: An Outcome Evaluation

Journal of Policy and Practice in Intellectual Disabilities — Wed, 01 Dec 2010 00:00:00 +0100

This report provides the findings from an outcome study of this issue. Twenty‐seven people with intellectual and developmental disability, residents in Kent County, Michigan, USA, chose to engage in microenterprise and became the basis of this study. We measured changes in the qualities and quantities of work life. Participants reported enhanced quality of work life in most of the 17 areas. Their overall “scale score” significantly increased by 26 points on a 100‐point scale. The support workers' data revealed significantly enhanced quality of work life in 5 of 14 areas, and their overall scale increase of 6 points approached statistical significance. Preliminary findings are regarded as encouraging, particularly because statistics on competitive and supported employment have not i...

Applying Corporate Citizenship Theory to the Operation of Affirmative Businesses

Journal of Policy and Practice in Intellectual Disabilities — Wed, 01 Dec 2010 00:00:00 +0100

AbstractTo address the need for more employment opportunities for individuals with intellectual disabilities (ID), many vocational rehabilitation agencies have established social ventures called affirmative businesses. Unlike most traditional vocational rehabilitation programs, affirmative businesses compete directly with for‐profit businesses producing similar goods or services. Given that nonprofit agencies operating these businesses are supported by taxpayer dollars and private donations, there is increased scrutiny and expectations for legal and ethical behavior and practices. An earlier study of 15 affirmative businesses identified themes and management strategies that contributed to business viability or failure. A reexamination of the findings through the lens of corporate citizen...

Career Interests and Self‐Efficacy Beliefs Among Young Adults With an Intellectual Disability

Journal of Policy and Practice in Intellectual Disabilities — Wed, 01 Dec 2010 00:00:00 +0100

AbstractWork is important for people with disabilities, and fosters their career development and quality of life. Findings from social cognitive theory suggest that transition to work and work inclusion processes should be based on opportunities to explore the world of work, awareness of professional options (of which people with an intellectual disability (ID) frequently have little knowledge), and consideration of career interests and self‐efficacy beliefs. The present study was aimed at verifying whether people with ID present interests and self‐efficacy beliefs in less complex occupations, and whether self‐efficacy beliefs can predict career interests, similar to results observed with individuals without ID. The study also investigated differences associated with ID level and wit...

Choice‐Making in Vocational Activities Planning: Recommendations from Job Coaches

Journal of Policy and Practice in Intellectual Disabilities — Wed, 01 Dec 2010 00:00:00 +0100

AbstractChoice in the job seeking process may lead to increased satisfaction with the chosen job, and improve attention, performance, and motivation. Consequently, providing opportunities to express choices and interests while planning vocational activities is a key factor in achieving employment outcomes. Despite their commitment to promoting choice‐making, service providers encounter important barriers to understanding the vocational interests of persons with intellectual disabilities who may have difficulty expressing their choices verbally. Methods of recording choices expressed through nonverbal means of communication are therefore needed. Such a method was designed and field‐tested. Interviews were conducted with participating job coaches to assess its practical value and provide...

A Preliminary Investigation of Factors Affecting Employment Motivation in People With Intellectual Disabilities

Journal of Policy and Practice in Intellectual Disabilities — Wed, 01 Dec 2010 00:00:00 +0100

AbstractRelatively small numbers of people with intellectual disabilities (ID) are engaging in paid employment and those who are tend to be working only part‐time. This preliminary study addressed the question of what factors motivate people with ID to work. The issue was investigated in a sample of 10 young work‐age adults attending supported learning courses at a further education college in England. Participants were asked directly about their feelings through a focus group. A set of questions with additional prompts was used to elicit responses, and cards and scales were used as visual aids. Participants were asked about what factors motivated them to work and what factors deterred them from working. Thematic analysis of the transcribed tapes revealed three major themes that affect...

Employment and Volunteering for Adults With Intellectual Disability

Journal of Policy and Practice in Intellectual Disabilities — Wed, 01 Dec 2010 00:00:00 +0100

AbstractEmployment is a fundamental part of adult life. Adults with intellectual disability (ID) face multiple barriers to employment, however, and are underrepresented in the paid workforce. Formal volunteering has been promoted as both a stepping stone and an alternative to employment for some adults with disability. The purpose of this article is to provide an overview of research findings relating to volunteering and employment for work‐age adults with ID. Few studies have examined the experiences of adults with ID who volunteer. The findings indicate that volunteering alone is unlikely to lead to employment for adults with ID. However, some adults with ID view volunteering as a meaningful and desirable alternative to paid work. There is a need for further research to examine the rel...

Editorial: Employment as a Path to Inclusion

Journal of Policy and Practice in Intellectual Disabilities — Wed, 01 Dec 2010 00:00:00 +0100

AbstractAuthor provides synthesis of issues and findings of articles contained in a special collection on employment and vocational involvement of adults with intellectual disabilities (ID), noting that the articles in this issue cover an array of topics, including volunteerism, transition, and alternative models of employment, and that although addressing an array of issues, they are intricately linked. Author posits that these articles may serve to advance the research agenda with respect to transition and employment by encouraging attention to key issues, such as creating a dialogue around the role of employment in contrast to other productivity options in the lives of people with ID; increasing attention to meaningful outcomes in determining the success of transition and employment sup...

Informational Digest Bulletin From San Raffaele Foundation and Tosinvest Sanità (No. 23). Consciousness: No Matter What Is, No Matter Where Is—An Edge Shot Approach

Journal of Policy and Practice in Intellectual Disabilities — Tue, 31 Aug 2010 23:00:00 +0100

(Source: Journal of Policy and Practice in Intellectual Disabilities)

Adaptation of the ABS‐S:2 for Use in Spain With Children With Intellectual Disabilities

Journal of Policy and Practice in Intellectual Disabilities — Tue, 31 Aug 2010 23:00:00 +0100

Abstract (Source: Journal of Policy and Practice in Intellectual Disabilities)

Sensory Impairment in Adults With Intellectual Disabilities—An Exploration of the Awareness and Practices of Social Care Providers

Journal of Policy and Practice in Intellectual Disabilities — Tue, 31 Aug 2010 23:00:00 +0100

Abstract (Source: Journal of Policy and Practice in Intellectual Disabilities)

Electronic Health Record Analysis of the Primary Care of Adults With Intellectual and Other Developmental Disabilities

Journal of Policy and Practice in Intellectual Disabilities — Tue, 31 Aug 2010 23:00:00 +0100

Abstract (Source: Journal of Policy and Practice in Intellectual Disabilities)

Transition from Special Education into Postschool Services for Young Adults With Intellectual Disability: Irish Parents' Experience

Journal of Policy and Practice in Intellectual Disabilities — Tue, 31 Aug 2010 23:00:00 +0100

Abstract (Source: Journal of Policy and Practice in Intellectual Disabilities)

A Study of Post‐Institutionalized Men With Severe Intellectual Disabilities and Challenging Behavior

Journal of Policy and Practice in Intellectual Disabilities — Tue, 31 Aug 2010 23:00:00 +0100

Abstract (Source: Journal of Policy and Practice in Intellectual Disabilities)

Multiagency Protocols in Intellectual Disabilities Transition Partnerships: A Survey of Local Authorities in Wales

Journal of Policy and Practice in Intellectual Disabilities — Tue, 31 Aug 2010 23:00:00 +0100

Abstract (Source: Journal of Policy and Practice in Intellectual Disabilities)

A Pilot Study Analyzing Mortality of Adults With Developmental Disabilities Residing in Nursing Homes in Connecticut

Journal of Policy and Practice in Intellectual Disabilities — Tue, 31 Aug 2010 23:00:00 +0100

Abstract (Source: Journal of Policy and Practice in Intellectual Disabilities)

Deinstitutionalization in Ontario, Canada: Understanding Who Moved When

Journal of Policy and Practice in Intellectual Disabilities — Tue, 31 Aug 2010 23:00:00 +0100

Abstract (Source: Journal of Policy and Practice in Intellectual Disabilities)

Developing a Health Surveillance System for People With Intellectual Disabilities in the United States

Journal of Policy and Practice in Intellectual Disabilities — Tue, 31 Aug 2010 23:00:00 +0100

Abstract (Source: Journal of Policy and Practice in Intellectual Disabilities)

Informational Digest Bulletin from San Raffaele Foundation and Tosinvest Sanità (No. 22). New Quantitative Approaches in the Evaluation of Neuroanatomical Features, "Tonic" Cortical EEG Rhythms, and Cognitive/Motor Behavior in Individuals With Down Syndrome

Journal of Policy and Practice in Intellectual Disabilities — Sun, 13 Jun 2010 23:00:00 +0100

(Source: Journal of Policy and Practice in Intellectual Disabilities)

Staff Perceptions of Essential Prerequisites Underpinning End-of-Life Care for Persons With Intellectual Disability and Advanced Dementia

Journal of Policy and Practice in Intellectual Disabilities — Sun, 13 Jun 2010 23:00:00 +0100

To better address palliative care and end-of-life issues for persons with intellectual disability (ID) and dementia, work was undertaken to understand the perspectives of agency staff in both the ID services and specialist palliative care fields. A qualitative descriptive design composed of 13 focus group interviews involved 50 participants drawn from six ID service providers and seven participants from one specialist palliative care service. Analysis was an iterative process; codes were identified and through thematic analysis, collapsed into two core themes: building upon services' history and personal caring[ndash][ndash]offering quality and sensitive care, and supporting comfort and optimal death in persons with ID and advanced dementia. Challenges were raised for service systems in th...

Supported Accommodation for People With Intellectual Disabilities and Quality of Life: An Overview

Journal of Policy and Practice in Intellectual Disabilities — Sun, 13 Jun 2010 23:00:00 +0100

This article presents the findings of a review of evidence related to quality of life in models of supported accommodation for adults with intellectual disabilities identified in English-speaking nation deinstitutionalization and postdeinstitutionalization studies. An international literature-based investigation of research published between 1995 and 2005 in English-language peer-reviewed academic journals was conducted to: (1) review the outcome of deinstitutionalization and postinstitutionalization studies; (2) examine instruments used to measure outcomes for individuals; and (3) compare costs and benefits associated with different models of supported accommodation. In the deinstitutionalization studies, there was consistent evidence of greater choice and self-determination, participatio...

A Comparative Study of the Situation of Supported Employment in Europe

Journal of Policy and Practice in Intellectual Disabilities — Sun, 13 Jun 2010 23:00:00 +0100

Agencies offering supported employment (SE) in the European Union (EU) were surveyed using a Web-based questionnaire in 2006. Responses were obtained from 184 organizations, primarily from Finland, Spain, and the United Kingdom (UK). The majority of respondents offered a wide range of services with 83% offering SE and about half having begun offering it in the last 5 years. The data showed many organizations offering services in addition to SE (e.g., vocational training or sheltered work provision). There was significant variation in provision of key elements of SE, particularly workplace support. This may disadvantage people with intellectual disabilities (ID). Funding of SE varied across areas, with 22% overall reliant on short-term European funding. People with ID were the largest group...

Evaluation of Community-Based Health Promotion Programs for Special Olympics Athletes

Journal of Policy and Practice in Intellectual Disabilities — Sun, 13 Jun 2010 23:00:00 +0100

This study reports on an evaluation of the program and on predictors of program success. The subjects included 56 athletes with ID who participated in these five programs. Data were drawn from interviews with the participants and 54 coaches, residential staff, and parents at baseline and after program completion, along with data from five program directors after program completion. Qualitative and quantitative findings were presented for the following areas: psychosocial and physical health status, physical and nutrition cognitions and supports, and health behaviors among the athletes; program satisfaction among coaches and athletes; and process and structural variables associated with implementation of the programs. Positive psychosocial and health benefits included improved perceived hea...

Successfully Translating Language and Culture when Adapting Assessment Measures

Journal of Policy and Practice in Intellectual Disabilities — Sun, 13 Jun 2010 23:00:00 +0100

A need exists for culturally valid and reliable developmental assessment tools for children with disabilities that are able to accommodate multiple languages. One way in which this goal can be achieved is through test translations. The purpose of this preliminary study was to examine the use of translations of select developmental assessment instruments from English to Afrikaans and from one cultural context to another (Western to South African). Specifically, we examined children's performance on two measures of development: the Mullen Scales of Early Learning and the Ages and Stages Questionnaires (ASQ). Both measures were completed for 47 typically developing South African preschool children between 3 and 6 years of age. The Mullen was completed by a speech and language therapist and th...

Dementia in Older Adults With Intellectual Disabilities—Epidemiology, Presentation, and Diagnosis

Journal of Policy and Practice in Intellectual Disabilities — Sun, 13 Jun 2010 23:00:00 +0100

As life expectancy of people with intellectual disabilities (ID) extends into older age, dementia is an increasing cause of morbidity and mortality. To update and summarize current knowledge on dementia in older adults with ID, the authors conducted a comprehensive review of the published literature from 1997[ndash]2008 with a specific focus on: (1) epidemiology of dementia in ID in general as well as in specific genetic syndromes; (2) presentation; and (3) diagnostic criteria for dementia. The review drew upon a combination of searches in electronic databases Medline, EMBASE, and PsycINFO for original research papers in English, Dutch, or German. The authors report that varied methodologies and inherent challenges in diagnosis yield a wide range of reported prevalence rates of dementia. R...

Informational Digest Bulletin from San Raffaele Foundation and Tosinvest Sanità (No. 22). New Quantitative Approaches in the Evaluation of Neuroanatomical Features, “Tonic” Cortical EEG Rhythms, and Cognitive/Motor Behavior in Individuals With Down Syndrome

Journal of Policy and Practice in Intellectual Disabilities — Mon, 31 May 2010 23:00:00 +0100

(Source: Journal of Policy and Practice in Intellectual Disabilities)

Staff Perceptions of Essential Prerequisites Underpinning End‐of‐Life Care for Persons With Intellectual Disability and Advanced Dementia

Journal of Policy and Practice in Intellectual Disabilities — Mon, 31 May 2010 23:00:00 +0100

Abstract (Source: Journal of Policy and Practice in Intellectual Disabilities)

Evaluation of Community‐Based Health Promotion Programs for Special Olympics Athletes

Journal of Policy and Practice in Intellectual Disabilities — Mon, 31 May 2010 23:00:00 +0100

Abstract (Source: Journal of Policy and Practice in Intellectual Disabilities)

Dementia in Older Adults With Intellectual Disabilities—Epidemiology, Presentation, and Diagnosis

Journal of Policy and Practice in Intellectual Disabilities — Mon, 31 May 2010 23:00:00 +0100

Abstract (Source: Journal of Policy and Practice in Intellectual Disabilities)

Knowledge and Perceptions of Newly Graduated Medical Practitioners in Malaysia of Their Role in Medical Care of People With Developmental Disabilities

Journal of Policy and Practice in Intellectual Disabilities — Mon, 31 May 2010 23:00:00 +0100

Improving content and consistency on developmental disabilities in undergraduate medical curricula has been recommended as a means of improving health outcomes for people with developmental disabilities. Although often the subject of studies in Western countries, little is known about content on developmental disabilities in undergraduate curricula in developing countries. A study was undertaken to: (1) explore content and experience with developmental disabilities received in undergraduate training by medical practitioners in Malaysia; and (2) explore perceptions of their role in the identification and management of developmental disabilities in practice. Comparisons were made according to location of training. Data were collected using a 107-item questionnaire that was administered to 23...

Erratum

Journal of Policy and Practice in Intellectual Disabilities — Wed, 03 Mar 2010 00:00:00 +0100

(Source: Journal of Policy and Practice in Intellectual Disabilities)

Informational Digest Bulletin From San Raffaele Foundation and Tosinvest Sanità (No. 21). A New Quantitative Approach of the Evaluation of "Tonic" Cortical EEG Rhythms in Adults With Down Syndrome and in Adults With an Impairment of Awareness—Persistent Vegetative State (PVS)

Journal of Policy and Practice in Intellectual Disabilities — Wed, 03 Mar 2010 00:00:00 +0100

(Source: Journal of Policy and Practice in Intellectual Disabilities)

Aging in Down Syndrome: Morbidity and Mortality

Journal of Policy and Practice in Intellectual Disabilities — Wed, 03 Mar 2010 00:00:00 +0100

The life expectancy of adults with Down syndrome has increased dramatically over the last 30 years, leading to increasing numbers of adults with Down syndrome now living into middle and old age. Early-onset dementia of the Alzheimer type is highly prevalent in adults with Down syndrome in the sixth decade, and this has overshadowed other important conditions related to aging among adults with Down syndrome. The authors' aim was to update and summarize current knowledge on these conditions, and examine causes of morbidity and mortality in older people with Down syndrome by conducting a systematic review of the published literature for the period: 1993[ndash]2008. They reviewed English-language literature drawn from searches in the electronic databases Medline, CINAHL, and PsycINFO, as well ...

Major Health Risks in Aging Persons With Intellectual Disabilities: An Overview of Recent Studies

Journal of Policy and Practice in Intellectual Disabilities — Wed, 03 Mar 2010 00:00:00 +0100

The authors examined the health-related literature on aging and intellectual disabilities (ID) published since 1999, with specific focus on examining findings on age-associated health risk factors, such as cardiovascular, gastrointestinal, and musculoskeletal system health issues, and age-related oral health. They also examined studies of lifestyle health risks, primarily the contributions to overweight or obesity. Although the review revealed varying differences in the prevalence of health risk factors, significant evidence is emerging that cardiovascular disease is as prevalent among people with ID and is as common a cause of death as in the general population. However, the review showed that the variations in prevalence were culturally dependent. Digestive system problems were evident w...

Frailty vs. Disability Distinctions in People With Intellectual Disabilities

Journal of Policy and Practice in Intellectual Disabilities — Wed, 03 Mar 2010 00:00:00 +0100

While the extent of research on age-related frailty among adults in general has increased substantially during the past two decades, there has been a void in equivalent research with respect to adults with intellectual disabilities (ID). While frailty and disability have been seen as different, but overlapping, concepts in the field of ID, the concept of frailty is missing an empirical foundation. The authors define the concept of frailty as applied to adults with ID, using indicators based on Fried's definition (i.e., a physiological state of increased vulnerability to stressors that follows from decreased physiological reserves and dysregulation of a physiological system) and Rockwood's frailty criteria (multisystemic instability, change over time, allowance for heterogeneity, associatio...

Carer Knowledge and Experiences With Menopause in Women With Intellectual Disabilities

Journal of Policy and Practice in Intellectual Disabilities — Wed, 03 Mar 2010 00:00:00 +0100

This study investigated carer knowledge of how menopause affects women with ID under their care and how they may help them to cope with it. One-to-one interviews were undertaken with 69 carers (7 male/62 female) from a range of backgrounds, all with current responsibility for the care of one or more pre-, peri-, and/or postmenopausal women with ID. Carers reported difficulty in disentangling the psychological and physical consequences of the menopause from behaviors and symptoms arising from other causes. There was general recognition of the transitional importance of menopause and a widespread acknowledgment of the resilience that many women with ID show in coping with it. However, carers emphasized the need for health resources to be better tailored to the women's needs and for more rele...

Reliance on Carer Reports of Early Symptoms of Dementia Among Adults With Intellectual Disabilities

Journal of Policy and Practice in Intellectual Disabilities — Wed, 03 Mar 2010 00:00:00 +0100

As clinicians often rely on carer reports to identify adults with intellectual disabilities (ID) with early signs of dementia, this study focused on carer-reported symptoms to ascertain whether carer reports of decline in everyday function would be a more effective screening method to detect possible cases of dementia than reports of memory decline in older adults with ID. Subjects were 154 participants who were reassessed along with their carers two to three years after baseline. A questionnaire for carer-reported change in everyday function and the Dementia Questionnaire for Persons with Mental Retardation (DMR) were used to assess carer views of everyday function and memory. The diagnosis of dementia was confirmed by two psychiatrists working independently. Participants who developed de...

Caregiving and Adults With Intellectual Disabilities Affected by Dementia

Journal of Policy and Practice in Intellectual Disabilities — Wed, 03 Mar 2010 00:00:00 +0100

Authors conducted a systematic review of the available Dutch, English, and German language literature for the period 1997[ndash]2008 on the current knowledge on social-psychological and pharmacological caregiving with respect to older adults with intellectual disabilities (ID) affected by dementia. Authors note that caregiving occurs on a personal level between the person and their carer and organizational and interorganizational supports have an impact on the quality of care provided. However, the lack of robust evidence to meet the needs of adults with ID affected by dementia means that service organizations often have to extrapolate from the evidence base of dementia care practices in the general population. The review showed that concerns over staff burden, behavioral interventions, an...

Siblings of Adults With Developmental Disabilities: Psychosocial Outcomes, Relationships, and Future Planning

Journal of Policy and Practice in Intellectual Disabilities — Wed, 03 Mar 2010 00:00:00 +0100

As siblings play an increasing role in the lives of people with intellectual and developmental disabilities as a result of the longer lifespan of this population and the aging of their parents, more investigative work in this area is warranted. To lay a foundation for this, the authors reviewed the English-language literature on siblings of adults with intellectual and developmental disabilities, focusing on three main questions: (1) what are the psychosocial outcomes of having a sibling with an intellectual and developmental disabilities on the sibling without a disability?; (2) what factors relate to the nature of the sibling relationship?; and (3) what factors relate to future planning, including expected and future relationships when parents can no longer provide care? This literature ...

A Five-Country Comparative Review of Accommodation Support Policies for Older People With Intellectual Disability

Journal of Policy and Practice in Intellectual Disabilities — Wed, 03 Mar 2010 00:00:00 +0100

This article compares the development and implementation of accommodation support policies for people aging with intellectual disabilities in five liberal welfare states. It describes the limited development of policies in this area and suggests possible reasons why this is the case. A review of the peer reviewed and grey or unpublished advocacy and policy literature on aging policies for people with intellectual disability was conducted which covered Australia, Canada, Ireland, the UK, and the U.S. Despite consistent identification of similar broad policy issues and overarching goals, little progress has been made in the development of more specific policies or implementation strategies to address issues associated with accommodation support as people age. Policy debates have conceptualiz...

Aging . . . A Continuing Challenge

Journal of Policy and Practice in Intellectual Disabilities — Mon, 01 Mar 2010 00:00:00 +0100

(Source: Journal of Policy and Practice in Intellectual Disabilities)

Minutes

Journal of Policy and Practice in Intellectual Disabilities — Tue, 08 Dec 2009 00:00:00 +0100

(Source: Journal of Policy and Practice in Intellectual Disabilities)

Informational Digest Bulletin From San Raffaele Foundation and Tosinvest Sanità (No. 20). A New Protocol for the Quantitative Evaluation of Graphic Gesture: First Application in Subjects With Parkinson's Disease

Journal of Policy and Practice in Intellectual Disabilities — Tue, 08 Dec 2009 00:00:00 +0100

(Source: Journal of Policy and Practice in Intellectual Disabilities)

Achievement and Inclusion in Schools

Journal of Policy and Practice in Intellectual Disabilities — Tue, 08 Dec 2009 00:00:00 +0100

(Source: Journal of Policy and Practice in Intellectual Disabilities)

Defining "Sexualized Challenging Behavior" in Adults With Intellectual Disabilities

Journal of Policy and Practice in Intellectual Disabilities — Tue, 08 Dec 2009 00:00:00 +0100

Inappropriate sexual behaviors are a subset of challenging behaviors that limit the community integration of individuals with intellectual disabilities. Despite the stigmatizing effect of problematic sexual behavior, research efforts in this area have been limited and often used narrow prospective definitions. As such, research has been limited to a focus on "sexual offending" and "abuse," terms which are often criticized in their applicability to people with intellectual disabilities given their connotations of criminal intent or insight. The authors propose adopting the term "sexualized challenging behavior" and define it by using empirical methods. Using a qualitative methodology, they examined a six-month sample of service-based documentation reporting sexual behaviors that were proble...

Experience in Cambodia With the Use of a Culturally Relevant Developmental Milestone Chart for Children in Low- and Middle-Income Countries

Journal of Policy and Practice in Intellectual Disabilities — Tue, 08 Dec 2009 00:00:00 +0100

The awareness and knowledge of developmental milestones among health practitioners need to be enhanced to better enable early identification and intervention with children who have delays in development, intellectual deficit, and developmental disabilities and are residents in low-and middle-income countries. To meet this end, a simple one-page check-off developmental milestone chart for age groups birth to eight years was developed as an outgrowth of a training program for pediatricians in Cambodia. Expected milestones for gross motor, fine motor, language, and social development were charted for each age group, and then validation trials were performed in an outpatient clinic over two years. It was observed that 25% and 31.5% of children failed to achieve one or more age-appropriate deve...

Health Status and Activities of Daily Living and Walking in Older People With Intellectual Disabilities

Journal of Policy and Practice in Intellectual Disabilities — Tue, 08 Dec 2009 00:00:00 +0100

This study's aim was to describe the association between health status and activities of daily living (ADLs) in older adults with intellectual and developmental disabilities (I/DD). Health status and level of independence associated with ADLs and walking were surveyed in a cohort of 1,371 adults over age 40 years from two regions of upstate New York using the Rochester Health Status Survey. Multiple logistic regression analyses were conducted to assess the association between number of organ system disorders (OSDs) and level of independence in eating, bathing, dressing, toileting, and walking. Increasing numbers of comorbidities correlated with impairments in ADLs and walking, which were independent of increasing age. The severity of I/DD was correlated with impairments in some ADLs regard...

Eight Years of Specialist Training of Dutch Intellectual Disability Physicians: Results of Scientific Research Education

Journal of Policy and Practice in Intellectual Disabilities — Tue, 08 Dec 2009 00:00:00 +0100

Training in scientific research methods and skills is a vital part of Dutch specialist training in intellectual disability medicine. The authors evaluated results of such training at one Dutch university medical facility that had an obligatory research program involving projects conducted by the physicians-in-training (topics, teamwork, acquired competencies, and products). Since 2000, 28 research projects were started, and 24 of them were completed by teams made up of two to five trainees. Project topics included syndrome-related comorbidity (n = 8), lifestyle (n = 2), specific medical conditions (n = 5), diagnostic methods (n = 5), and care by intellectual disability physicians (n = 8). Sixteen of the study designs were cross-section observational, five were retrospective file reviews, o...

Developing an Education Intervention for Staff Supporting Persons With an Intellectual Disability and Advanced Dementia

Journal of Policy and Practice in Intellectual Disabilities — Tue, 08 Dec 2009 00:00:00 +0100

Generally, staff working in settings that provide care for adults with intellectual disabilities (ID) have not received specific education with respect to extended care for terminal illnesses or late-stage dementia. Equally, staff working in specialist palliative care often are not familiar with the unique issues of supporting persons with intellectual disabilities affected by dementia. To understand care concerns with respect to supporting persons with ID and advanced dementia, and to develop, deliver, and evaluate an educational intervention with staff in ID settings and specialist palliative care services, 14 focus group interviews were conducted with staff across six ID services and one specialist palliative care provider in the greater Dublin (Ireland) area. Qualitative descriptive an...

Choices for People With Intellectual Disabilities: Official Discourse and Everyday Practice

Journal of Policy and Practice in Intellectual Disabilities — Tue, 08 Dec 2009 00:00:00 +0100

Official policy talk of "choice" for people with intellectual impairments tends toward fundamental life choices (e.g., who to marry, what job to work at) at the expense of the minor but more frequent concerns of daily living (when to wash, what to eat, where to go in the evening). Statutes and mission statements are unspecific about how any such choices, big or small, are, or should be, offered. They are also silent on the relation of exercising "choices" to institutional imperatives. To examine these particulars the authors undertook an examination of how choice policies are actualized in day-to-day activities in two group homes. Data were drawn from a broader ethnographic study of residential services for people with intellectual disabilities serviced by National Health Service Trust in ...

Solution-Focused Brief Therapy With Persons With Intellectual Disabilities

Journal of Policy and Practice in Intellectual Disabilities — Tue, 08 Dec 2009 00:00:00 +0100

Solution-Focused Brief Therapy (SFBT) is a short-term, goal-focused, and client-directed therapeutic approach that helps the client construct solutions rather than dwell on problems. SFBT has rarely been used with clients with intellectual disabilities (ID). The authors discuss how this relatively new form of therapy in an adapted form can be made suitable for clients with ID. The assumptions of this therapeutic approach, the types of problems and settings addressed by SFBT, and a description of the interventions used in SFBT are considered. Indications and contraindications for SFBT and empirical data on the effectiveness of the therapy are discussed both with regard to clients with or absent ID. The authors suggest that tailoring SFBT to clients with ID can be done by using simple langua...

Including Adults With Intellectual Disabilities in Research: Scientists' Perceptions of Risks and Protections

Journal of Policy and Practice in Intellectual Disabilities — Tue, 08 Dec 2009 00:00:00 +0100

Social and cognitive characteristics of adults with intellectual disabilities (ID) place them at risk for inappropriate inclusion in or exclusion from research participation. As we grapple with how to include adults with ID in research in order to secure their right to contribute to scientific advancements and be positioned to derive benefit from ensuing knowledge, it is critical to consider scientific gatekeepers' perspectives on risks of and protections for including adults with ID in research. We surveyed 199 Institutional Review Board members and intellectual disability researchers in the United States to identify their perceptions of specific risks and necessary protections in (hypothetical) research studies. The research studies varied as to whether they included adults with ID in th...

A Personal Note on Eunice Kennedy Shriver—A Legacy in Ireland

Journal of Policy and Practice in Intellectual Disabilities — Tue, 08 Dec 2009 00:00:00 +0100

(Source: Journal of Policy and Practice in Intellectual Disabilities)

In Memoriam: Eunice Kennedy Shriver

Journal of Policy and Practice in Intellectual Disabilities — Tue, 01 Dec 2009 00:00:00 +0100

(Source: Journal of Policy and Practice in Intellectual Disabilities)

Errata

Journal of Policy and Practice in Intellectual Disabilities — Mon, 31 Aug 2009 23:00:00 +0100

(Source: Journal of Policy and Practice in Intellectual Disabilities)

Understanding Learning Disability and Dementia: Developing Effective Interventions

Journal of Policy and Practice in Intellectual Disabilities — Mon, 31 Aug 2009 23:00:00 +0100

(Source: Journal of Policy and Practice in Intellectual Disabilities)

Informational Digest Bulletin from San Raffaele Foundation and Tosinvest Sanità (No. 19). A Brief Report on Research Activities at the Scientific Research Institute

Journal of Policy and Practice in Intellectual Disabilities — Mon, 31 Aug 2009 23:00:00 +0100

(Source: Journal of Policy and Practice in Intellectual Disabilities)

Effects of the Changes in Legislation Governing Offenders with Intellectual Disabilities in Norway: A Descriptive Study

Journal of Policy and Practice in Intellectual Disabilities — Mon, 31 Aug 2009 23:00:00 +0100

A recent change in legislation in Norway redefined which persons with an intellectual disability (ID) are considered as "offenders" within the judicial system. After that change, the number of adults with ID convicted of a crime and subject to forensic services decreased from 27 in 2002 to 13 in 2006. Crimes considered under the statue include those of a violent nature, sexual offenses, or life-threatening arson. Persons falling under provisions of the statue include those identified as non-responsible with intellectual functioning corresponding to moderate or severe ID (IQ < 55). The new statue includes a provision of sentence to mandatory care (MC) for those with a high risk of recidivism. The aim of this study was to compare offenders with ID adjudicated before and after the legislation...

Impact of Social Advocacy on Updating Incapacity Determination Procedures for People With Intellectual Disabilities in Poland

Journal of Policy and Practice in Intellectual Disabilities — Mon, 31 Aug 2009 23:00:00 +0100

The authors discuss the antecedents to recent changes in Poland's guardianship laws. These include a review of: (1) historical procedures in place for adjudicating incapacity; (2) research carried out in 2000 on the initiative of the Polish Association for Persons with Mental Handicap (PAPMH) on judicial practices in Polish courts with respect to adjudicating persons with intellectual disabilities (ID) as legally incapable; and (3) a successful lobbying campaign conducted by the PAPMH to institute changes in the law. The research involved a review by law students of 393 cases of capacity adjudications conducted between 1998 and 2000 in six district courts in various parts of Poland. The review revealed extensive irregularities in judicial practice, including that: (1) decisions about legal...

Autonomy Markers in Brazilian Adults With Intellectual Disabilities

Journal of Policy and Practice in Intellectual Disabilities — Mon, 31 Aug 2009 23:00:00 +0100

The objective of the study was to investigate the relationship between autonomy markers in adult people with intellectual disabilities (ID) and variables such as intelligence quotient (IQ), early aging, and literacy. Participants were 47 adults with ID (33 men; aged 28[ndash]58 years with nonspecific etiology, 34 literate). All participants were trainees at the Center for Training of Capacity and Orientation for Employment at Associação de Pais e Amigos dos Excepcionais de São Paulo, São Paulo State, Brazil. They were divided into two age groups: younger (n = 27, mean age 31.85; ±2.23), and older (n = 38, mean age 41.84; ±5.54). They were administered intelligence scales twice, and answered questions related to social participation, community integration, and choice-making; the perce...

Diverse Conceptualizations of Deinstitutionalization as a Barrier to the Implementation of Discharge Policies

Journal of Policy and Practice in Intellectual Disabilities — Mon, 31 Aug 2009 23:00:00 +0100

There are various reasons why the regular movement of people with intellectual disabilities from the institution to the community has been impeded in the United Kingdom. Some of these include the lack of a formal national policy, the difficulty of forming joint planning groups, fiscal difficulties, the lack of appropriate accommodation, inadequate development of services in the community, and resistance from the community. Using a case study approach, the author undertook to identify the particular barriers that arose in one specific discharge program, and to produce guidelines for avoiding such difficulties in future projects. Data were collected by means of interviews, and a grounded theory approach was employed for their analysis. It was found that the main obstacles to deinstitutionali...

Quality of Life of Australian Family Carers: Implications for Research, Policy, and Practice

Journal of Policy and Practice in Intellectual Disabilities — Mon, 31 Aug 2009 23:00:00 +0100

As part of an international, multicentered project, the burden of care, health, and subjective well-being experienced by select Australian family carers supporting a relative with disability at home were investigated. Some 448 family carers residing in New South Wales and Tasmania completed a battery of instruments, including a self-report demographic survey, the Family Caregiver Burden Inventory, the General Health Questionnaire, and the Personal Wellbeing Index. Respondents were predominantly females (mean age = 48 years), married, and supporting a son or daughter with an intellectual disability (mean age = 18 years). Although caring for their family member was not perceived to be a burden, respondents reported notable limitations on their social networks and social activities. They repo...

Current and Future Concerns of Older Parents of Sons and Daughters With Intellectual Disabilities

Journal of Policy and Practice in Intellectual Disabilities — Mon, 31 Aug 2009 23:00:00 +0100

Increasingly greater numbers of older parents are providing care at home for their sons and daughters with intellectual disabilities. As attention needs to be paid to the supports needed by such families to assist them with their caregiving activities, it is prudent to identify the types of supports that will be needed when the parents are no longer able to provide care. Working with a cohort of older parent carers in Prince Edward Island, Canada, the authors undertook to examine older carer concerns and planning issues. Using both qualitative and quantitative methods to explore the key issues that older parents of sons and daughters with intellectual disabilities are currently facing and their preferences for care in the future, the authors initiated a population-case-finding process, und...

Psychosocial Factors Affecting Adults With Intellectual Disabilities With Psychiatric Disorders in Cali, Colombia

Journal of Policy and Practice in Intellectual Disabilities — Mon, 31 Aug 2009 23:00:00 +0100

The objective of this study was to describe the psychosocial factors associated with the comorbidity between ID and psychiatric disorder of adults in the city of Cali, Colombia. Subjects were 50 dyads consisting of a carer and a person with ID. The Caregivers Questionnaire and the Integral Quality of Life Scale were adapted for use in the study. The analysis of information was based on three factors: person, family, and society. In the case of the personal factor, an adequate level of physical well-being and a good level of self-care were found in more than 60% of the adults with dual diagnosis, good adherence to treatment in 82%, and medium satisfaction in the individual-context relationship in 54%. With regard to the family factor, a high level of satisfaction of needs (84%) was found. G...

Care and Service Trajectories for People With Intellectual Disabilities: Defining Its Course and Quality Determinants From the Client's Perspective

Journal of Policy and Practice in Intellectual Disabilities — Mon, 31 Aug 2009 23:00:00 +0100

Care and service trajectories are identifiable routes through service systems that consist of all steps that people with intellectual disabilities (ID) and their families have to take to realize the care and services they need. Trajectories are especially prominent during the transitions from children's services to adult services. Within a service system in Noord-Brabant (in the Netherlands), the authors examined the course of such trajectories and their main bottlenecks and sought to identify their quality determinants. The first research question was addressed by an exercise in document analysis and the holding of semistructured interviews with key informants within the healthcare sector specialized for serving people with ID. A second research question was addressed by means of a litera...

IASSID Fellows

Journal of Policy and Practice in Intellectual Disabilities — Tue, 09 Jun 2009 23:00:00 +0100

(Source: Journal of Policy and Practice in Intellectual Disabilities)

Call for SubmissionsSpecial Issue on Transition & Employment

Journal of Policy and Practice in Intellectual Disabilities — Tue, 09 Jun 2009 23:00:00 +0100

(Source: Journal of Policy and Practice in Intellectual Disabilities)

Abstracts from the 2nd IASSID Asia-Pacific Regional Conference Singapore, June 24–27, 2009

Journal of Policy and Practice in Intellectual Disabilities — Tue, 09 Jun 2009 23:00:00 +0100

(Source: Journal of Policy and Practice in Intellectual Disabilities)

Challenging Behavior: A Barrier to Inclusion?

Journal of Policy and Practice in Intellectual Disabilities — Tue, 09 Jun 2009 23:00:00 +0100

Arguably, the most important outcome measure for services to people with intellectual disabilities is quality of life. Quality of life has been defined in numerous ways and may consist of many aspects, including physical, material, and emotional well-being, as well as interpersonal relationships, personal development, self-determination, social inclusion, and civic rights. However, the most important aspect is social inclusion. People with intellectual disabilities who show challenging behavior, however, often make other people uncomfortable so that social inclusion is more difficult, and evidence suggests that both children and adults with intellectual disabilities and challenging behavior (and their families) have poorer quality of life and more restrictions in their lives than others wi...

Challenging the Myths and Redressing the Missteps in Family Research

Journal of Policy and Practice in Intellectual Disabilities — Tue, 09 Jun 2009 23:00:00 +0100

Families of children with disabilities have been the subject of a number of myths, some of which have been introduced and promulgated by researchers influenced by cultural norms that may incline them to ask questions in particular ways and which may result in the institutionalization of ideas and methods, rather than subjecting established beliefs and perspectives to scrutiny. Only relatively recently, for example, has the conviction that only negative consequences will be experienced by families with a child with a disability been challenged. Research questions and instruments or approaches must allow for positive experiences and outcomes. In addition, often family research has failed to recognize the importance of cultural differences. One example of this can be found in assumptions of t...

Possibilities for an Inclusive Society in Singapore: Becoming Inclusive Within

Journal of Policy and Practice in Intellectual Disabilities — Tue, 09 Jun 2009 23:00:00 +0100

The envisioning of Singapore as an inclusive society has witnessed the most progressive systemic and policy developments concerning people with disabilities in recent years. The building of "heartware" in society (as in the will, values, and attitudes of its citizens) in order to realize the vision of an inclusive society, however, requires both change from within and change from without. For the vision of an inclusive society to be realized, an inclusive system needs to be upheld and supported by people who are inclusive within. The seeds for the possibilities of change in society toward inclusivity of diverse others (e.g., persons with intellectual disabilities) lie within the individual and imply that at the core of such change is personal interior growth and transformation. The sustain...

Persons With Intellectual and Multiple Disabilities in Japan

Journal of Policy and Practice in Intellectual Disabilities — Tue, 09 Jun 2009 23:00:00 +0100

The author outlines the history, current situation, and the future of the care and support system for people with intellectual and multiple disabilities in Japan. He describes how the service system has been shaped from within by Japanese legislation dating back to the Child Welfare Act of 1947, and how international events such as the "International Year of Persons with Disabilities" have influenced both legislation and service development in Japan. The author also outlines how researchers and lecturers are contributing to the development of services and educating the workforce, which provides the critical supports for people with disabilities in Japan. (Source: Journal of Policy and Practice in Intellectual Disabilities)

Healthy Persons With Intellectual Disabilities in an Inclusive Society

Journal of Policy and Practice in Intellectual Disabilities — Tue, 09 Jun 2009 23:00:00 +0100

Persons with intellectual disabilities (ID) have twice as many health problems than the general public. The author discusses evidence-based research on prevalence and best treatment of primary and secondary health problems in persons with ID. Citing the pan-European Pomona project, European data were collected on training for health professionals regarding health of persons with ID. International cooperation in research and transport of expertise through exchange of students and professionals in this field are recommended. (Source: Journal of Policy and Practice in Intellectual Disabilities)

The Aging Dilemma: Is Increasing Longevity Among People With Intellectual Disabilities Creating a New Population Challenge in the Asia-Pacific Region?

Journal of Policy and Practice in Intellectual Disabilities — Tue, 09 Jun 2009 23:00:00 +0100

The Macau Declaration on Ageing for Asia and the Pacific and the Plan of Action on Ageing for Asia and the Pacific provide a framework for defining the needs of the aging population in the Asia-Pacific region. It also served as a stimulus for planning and public commitment to addressing the needs of the region's elderly population, including the needs of each of the nation's adult and aging populations of persons with intellectual disabilities. Within the Asia-Pacific region, the diversity of cultural and economic interests often combines to define how services are provided to their aging populations and both how disabilities are perceived and how national policies reflect these interests in serving people with disabilities. Reports issued by the World Health Organization on improving long...

ICF-CY: A Universal Tool for Documentation of Disability

Journal of Policy and Practice in Intellectual Disabilities — Tue, 09 Jun 2009 23:00:00 +0100

The International Classification of Functioning, Disability and Health[mdash]ICF (ICF-CY) conceptual framework offers a new paradigm and taxonomy of human functioning disability, which can be used to guide holistic and interdisciplinary approaches to assessment and intervention. In settings serving children, youth, or adults with disabilities, the ICF-CY can provide comprehensive documentation of its involvement in special education and rehabilitation. Implementation of the ICF-CY in early intervention, special education, and habilitation settings should build on the adoption of the dimensional framework for practice and corresponding applications in assessment and intervention practices. An important priority in such applications is the identification and development of instruments and as...

Creating Possibilities for an Inclusive Society: A Commentary on the Second Asia-Pacific Conference

Journal of Policy and Practice in Intellectual Disabilities — Sun, 31 May 2009 23:00:00 +0100

(Source: Journal of Policy and Practice in Intellectual Disabilities)

Diagnostic Manual-Intellectual Disability: A Textbook of Diagnosis of Mental Disorders in Persons With Intellectual Disability

Journal of Policy and Practice in Intellectual Disabilities — Wed, 18 Mar 2009 04:00:00 +0100

(Source: Journal of Policy and Practice in Intellectual Disabilities)

Person-Centered Planning and Care Management With People With Learning Disabilities

Journal of Policy and Practice in Intellectual Disabilities — Wed, 18 Mar 2009 04:00:00 +0100

(Source: Journal of Policy and Practice in Intellectual Disabilities)

Quality of Life: From Concept to Future Applications in the Field of Intellectual Disabilities

Journal of Policy and Practice in Intellectual Disabilities — Wed, 18 Mar 2009 04:00:00 +0100

The authors consider conclusions reached with respect to quality of life (QoL); these are examined in terms of both the past and present developments and within the context of three major areas. These three are (1) application of QoL through support and intervention; (2) the application to family QoL and the development of a working model; and (3) application of QoL for policy and evaluation. These conclusions are examined in relation to implications for public policy in terms of support and intervention, measurement and evaluation, with particular focus on a greater understanding and acceptance of the implications and structure involved in the QoL model and the importance of family QoL. The authors maintain that this should entail the development of applications that are empirically based...

Utility of Logic Models to Plan Quality of Life Outcome Evaluations

Journal of Policy and Practice in Intellectual Disabilities — Wed, 18 Mar 2009 04:00:00 +0100

Quality of life is widely accepted as an important concept in the evaluation of health and social services provided to persons with intellectual disabilities. While quality of life has been studied as a service outcome and measure of program improvement, its application to multiple levels of program delivery and evaluation remain unclear and can be difficult for community-based agencies that lack resources. An approach using program logic models and including program staff can build evaluation capacity. Logic models can be used to link service components with relevant quality of life outcomes at short-term, intermediate, and long-term points in service delivery. The models can then guide the development of evaluation plans. A case example of how this approach is being used at a service age...

Using Quality of Life to Evaluate Outcomes and Measure Effectiveness

Journal of Policy and Practice in Intellectual Disabilities — Wed, 18 Mar 2009 04:00:00 +0100

Evaluating the outcomes achieved by service providers who assist people with intellectual disabilities is extremely important in terms of ascertaining whether service providers achieve their goals. Furthermore, knowledge of the outcomes achieved by service providers better equips those charged with managing them to make strategic decisions to fulfill their accountability obligations for the best use of limited resources. The authors provide support for the emerging view that quality of life is an outcome measure that can be utilized to assess service providers' performance. To do this they modified a performance measurement framework to illustrate how quality of life can be incorporated in a comprehensive analysis of the outcomes achieved by various stakeholders of the service provider. Th...

Family Quality of Life Before and After Out-of-Home Placement of a Family Member With an Intellectual Disability

Journal of Policy and Practice in Intellectual Disabilities — Wed, 18 Mar 2009 04:00:00 +0100

The effect of out-of-home residential placement on families has been previously studied. However, no study has examined this issue through the lens of "family quality of life" (FQoL). The aim of this study was to produce a picture of FQoL among families with a member with an intellectual disability (ID) who has multiple diagnoses (i.e., an additional condition such as a behavioral or emotional disturbance). FQoL before and after residential placement was examined. Sixteen family carers with family members with an ID participated in an in-depth interview focusing on five areas of FQoL: stress, coping, emotional impact, family relationships, and overall FQoL. The authors found that most families reported positive emotional changes after the placement occurred, except for lingering guilt and ...

Family Quality of Life: Moving From Measurement to Application

Journal of Policy and Practice in Intellectual Disabilities — Wed, 18 Mar 2009 04:00:00 +0100

Noting the absence of sound theoretical underpinnings for family quality of life (FQoL) research and work, the authors note that, to guide FQoL practice, research findings must be schematically organized so as to enable practitioners to implement empirical findings effectively. One way to meet this goal is to introduce a theoretical model that clearly displays and describes the relationships among variables that explain FQoL. Thus, the authors propose a theory of FQoL designed to explain how various concepts[mdash]systems, performance, individuals, and family units[mdash]influence variations in FQoL. In defining each of the concepts, they describe the theory's application within the context of a family vignette, illustrating how professionals might apply theoretical propositions to their p...

Family Quality of Life Empowered by Family-Oriented Support

Journal of Policy and Practice in Intellectual Disabilities — Wed, 18 Mar 2009 04:00:00 +0100

Professional services for persons with intellectual disabilities (ID) have begun to attach more importance to their environment. The concept of (family-related) quality of life proved to link very well with this idea and lent itself to constructing and evaluating services. One outcome was the emergence of equal partnerships between families, service providers, and other parties in the community. Within this context, the authors explored and described positive practices in supporting young adults with IDs by realizing their personal future plans based on partnerships, the concept of quality of life, and community support. Nine families were followed over a 2-year period (2004[ndash]2006). Face-to-face interviews and a survey were conducted with young adults, family members, and professional...

Choice as an Aspect of Quality of Life for People With Intellectual Disabilities

Journal of Policy and Practice in Intellectual Disabilities — Wed, 18 Mar 2009 04:00:00 +0100

Choice, a concept included in the quality of life approach, is frequently referred to in quality of life and related literature, but its components have not been described clearly. Drawing on conceptual considerations and research reports, the authors review and extend what is known about choice, and set out a conceptualization of its two main components: available opportunities and choice-making. The most important characteristics of opportunities are breadth and familiarity, and the most important characteristics of choice making are freedom, initiative, and skill. The authors consider the application of choice to supports and services by discussing numerous practical issues and providing suggestions for application. These are summarized as an overall four-step strategy for moving forwar...

Survey Outcomes and Cross-National Comparisons of Quality of Life With Respect to People With Intellectual Disabilities in Taiwan

Journal of Policy and Practice in Intellectual Disabilities — Wed, 18 Mar 2009 04:00:00 +0100

As studies of the quality of life (QoL) of adults with intellectual disabilities (ID) in Taiwan have been limited, the authors assessed how Taiwanese adults with ID experience their QoL, including comparisons with their counterparts in other countries. The study involved administering the Cross-Cultural QoL Indicators Survey and the Quality of Life Questionnaire in 2004 and 2005 to a total of 481 adults with ID who either were living with their family or residing within a facility. Results indicated that the domain of "social inclusion" was the lowest for both adults using residential services or living with family. In addition, Taiwanese residents with ID have lower levels of overall QoL, particularly among those living in institutions; although they were easily satisfied with their lives...

Quality of Life: Its Application to Persons With Intellectual Disabilities and Their Families—Introduction and Overview

Journal of Policy and Practice in Intellectual Disabilities — Wed, 18 Mar 2009 04:00:00 +0100

The authors provide an overview of quality of life (QoL) conceptualization in the field of intellectual disabilities (ID), provide background information, and set an organizing framework for presenting concepts and concrete ideas for applying QoL. This framework is useful for three broad categories of application in the field of ID that form the application of QoL to individuals, groups of individuals, and to families. QoL thus can be used as a sensitizing notion that gives a sense of reference and guidance from the individual's perspective, focusing on the person and the individual's environment and provides a framework for conceptualizing, measuring, and applying the QoL construct. The applications also frame evaluation strategies for QoL research. The authors conclude that there is a ne...

Guest Editorial on Quality of Life and Its Application

Journal of Policy and Practice in Intellectual Disabilities — Sun, 01 Mar 2009 05:00:00 +0100

(Source: Journal of Policy and Practice in Intellectual Disabilities)

Attitudes of Community Developmental Services Agency Staff Toward Issues of Inclusion for Individuals With Intellectual Disabilities

Journal of Policy and Practice in Intellectual Disabilities — Thu, 27 Nov 2008 08:04:09 +0100

This study highlights the need for education and training targeted at particular "at-risk" staff groups in order to ensure the successful implementation of the goals of the inclusion movement. (Source: Journal of Policy and Practice in Intellectual Disabilities)

Informational Digest Bulletin from San Raffaele Foundation and Tosinvest Sanità (No. 18). A New Research Project in Rome Between San Raffaele Research Institute and Faculty of Education at the Università degli Studi Roma Tre

Journal of Policy and Practice in Intellectual Disabilities — Wed, 26 Nov 2008 05:00:00 +0100

(Source: Journal of Policy and Practice in Intellectual Disabilities)

Minutes

Journal of Policy and Practice in Intellectual Disabilities — Wed, 26 Nov 2008 05:00:00 +0100

(Source: Journal of Policy and Practice in Intellectual Disabilities)

A Comprehensive Guide to Intellectual and Developmental Disabilities

Journal of Policy and Practice in Intellectual Disabilities — Wed, 26 Nov 2008 05:00:00 +0100

(Source: Journal of Policy and Practice in Intellectual Disabilities)

Brief Report: State of the Science Symposium on Aging and Developmental Disabilities1

Journal of Policy and Practice in Intellectual Disabilities — Wed, 26 Nov 2008 05:00:00 +0100

The overall goal of the 2007 State of the Science Symposium on Aging with Developmental Disabilities: Charting Lifespan Trajectories and Supportive Environments for Healthy Community Living (held in Atlanta, Georgia, U.S.A.) was to increase the understanding and definition of how to improve the health, psychosocial well-being, and community participation of older adults with intellectual and developmental disabilities. The symposium consisted of four main tracks (neurodevelopmental conditions; health care services, health promotion needs, and health literacy; family support and intergenerational caregiving; and environmental barriers and supports to community living). The symposium's participants recommended a greater focus on a research agenda that would serve to increase the knowledge on...

Enhancing Personal Outcomes: Organizational Strategies, Guidelines, and Examples

Journal of Policy and Practice in Intellectual Disabilities — Wed, 26 Nov 2008 05:00:00 +0100

Education and rehabilitation programs in the field of intellectual disabilities are developing specific strategies related to demonstrated personal outcomes, quality of life (QOL)-related services and supports, evidence-based practices, and quality improvement. The purpose of this article is to summarize key aspects of these strategies within a two-component framework: the concept of QOL and systems thinking. Based on our collective experiences and published literature, four specific strategies are presented and discussed: mental models, assessment, service delivery practices, and quality improvement (QI). Essential guidelines for the successful implementation of these strategies are then presented, along with an exemplary application of each strategy. Each example shows the significant ro...

Colleagues' Perception of Supported Employee Performance

Journal of Policy and Practice in Intellectual Disabilities — Wed, 26 Nov 2008 05:00:00 +0100

The authors investigated whether supported employees are perceived on an equal basis within the workplace by their nondisabled worker colleagues. Three types of social relationships were considered in a workplace context ("work acquaintances,""work friends," and "social friends") in order to examine whether the types of social relationships that develop between supported employees and their coworkers may reveal information regarding the level of equality between them and the level of integration enjoyed by the supported employees. Semi-structured interviews were held with coworkers of supported employees and were used to determine the extent to which supported employees become socially integrated. Specifically examined was the progression from "work acquaintances" to "work friends" and ult...

Psychologists' Clinical Practices in Assessing Dementia in Individuals With Down Syndrome

Journal of Policy and Practice in Intellectual Disabilities — Wed, 26 Nov 2008 05:00:00 +0100

This study set out to examine the clinical practice of one key professional group, namely clinical psychologists. A national survey of clinical psychologists in ID services in the United Kingdom was undertaken. Detailed descriptions of clinical practice were obtained from 64 psychologists. Responses were further explored in focus groups. The results suggest marked variability in practice, assessment methods, and explanations clinicians give to service users and carers. Clinicians described struggling with the ethics and practicalities of how to present dementia assessments to individuals with ID and highlighted a need for more research, debate, and guidance. They also noted numerous shortfalls in service provision once aging individuals with ID show signs of dementia. Further research and ...

Relationship Between Mobility Limitations and the Places Where Older Adults With Intellectual Disabilities Live

Journal of Policy and Practice in Intellectual Disabilities — Wed, 26 Nov 2008 05:00:00 +0100

As the population ages, mobility limitations are associated with increased mortality and negative health-related states both in the general population and among people with intellectual disabilities. The influence of mobility limitations upon the lives and lifestyles of people with intellectual disabilities remains poorly understood. Specifically, the extent to which mobility limitations might limit residential options for individuals and families has not been evaluated. To determine the relationship between mobility limitations and place of residence for adults with intellectual disabilities, age 45 and older, a proxy-response telephone survey was completed for 128 adults with intellectual disabilities in Southeastern Ontario. A participant's place of residence was categorized as being "h...

Adaptation of Flemish Services to Accommodate and Support the Aging of People With Intellectual Disabilities

Journal of Policy and Practice in Intellectual Disabilities — Wed, 26 Nov 2008 05:00:00 +0100

The authors attempted to find out to what extent and in which ways, in Belgium, have Flemish services for people with intellectual disability adapted to the specific needs of aging people. A study was undertaken and a questionnaire was developed to address the following research topics: (1) accommodations and personnel, (2) staff working methods, and (3) staff views and attitudes. The questionnaire was completed by 66 coordinating staff members in as many facilities. At the time of our study, these services supported 310 (27%) persons with Down syndrome age 40 years and older and 833 (73%) persons with intellectual disability (other than Down syndrome) age 55 years and older. Adaptations in accommodation and personnel management were obvious in the majority of the participating services. T...

Public Special Services Provided to People With Intellectual Disabilities in Sweden: A Life-Span Perspective

Journal of Policy and Practice in Intellectual Disabilities — Wed, 26 Nov 2008 05:00:00 +0100

This study describes public special services, support, and health care provided to an administratively defined county sample of people with intellectual disabilities from early childhood to adult age. Comparisons were made on the variables year of birth, sex, and assessed level of intellectual disabilities in 1974. Information was obtained from case files and included the period from year of birth of the participants (between 1959 and 1974) to 2005. All participants were provided public special services, support, and health care either periodically or throughout the study period. Changes in legislation were reflected in the type of services, support, and health care provided to the target group. Type and amount of special services and support were related to year of birth. Only a few diffe...

Relationships Among Risk, Sense of Coherence, and Well-Being in Parents of Children With and Without Intellectual Disabilities

Journal of Policy and Practice in Intellectual Disabilities — Wed, 26 Nov 2008 05:00:00 +0100

The authors studied the nature and function of the relationships of the comparative level of risk, sense of coherence (SOC), and well-being, over time, in mothers and fathers of preschool children with and without intellectual disabilities (IDs). The hypothesis that SOC functions as a moderator between risk and well-being was tested. Parents of children with IDs (mothers: n = 62 (46 at follow-up) and fathers: n = 49 (37 at follow-up)) and control parents (mothers: n = 178 (131 at follow-up) and fathers: n = 141 (97 at follow-up)) answered self-report measures on risk factors (i.e., child behavior problems, negative impact on the family and socioeconomic situation) and sense of coherence. Well-being and quality of life were used as outcomes, and were measured at baseline and at a one-year f...

In Memoriam: Kenneth A. Day (1936–2008) Consultant Psychiatrist

Journal of Policy and Practice in Intellectual Disabilities — Fri, 29 Aug 2008 08:47:08 +0100

(Source: Journal of Policy and Practice in Intellectual Disabilities)

Informational Digest Bulletin From San Raffaele Foundation and Tosinvest Sanità (No. 17). Electroencephalogram in Children and Adolescents With Down Syndrome

Journal of Policy and Practice in Intellectual Disabilities — Thu, 28 Aug 2008 04:00:00 +0100

(Source: Journal of Policy and Practice in Intellectual Disabilities)