LISA... is a parent support and lobby group, for parents and families with a family member having an intellectual or multiple disability, and living in a supported accommodation group home in the State of Victoria, Australia.
Thursday, May 02 2013
NDIS Workforce Ready Project - LINK
The NDIS Workforce Ready Project is researching and developing draft models for potential professional certification for people who work in the disability sector.
Views are being sought from people across Australia, including: people with a disability; families; carers; disability workers; managers and staff from disability services; and representatives from disability organisations and governments. We want to know how people with disability, their families and service providers might recognise that a person might be ‘right for the job’.
An online survey, interviews and focus groups are being conducted until the 17 May. For more information and to link to the online survey or register your interest in focus groups and interviews see the NDIS Workforce Ready web-site at http://ndisworkforceready.org/2013/04/have-your-say/
The Project has been funded by the Commonwealth Government (Practical Design Fund) to help prepare for DisabilityCare Australia, the national disability insurance scheme. The project is being conducted as a collaboration between Cootharinga North Queensland, AVANA Community, Australasian Disability Professionals, and Deakin University.
Your support and input to the research is very much appreciated.
NB: the consultation, including the online survey close on the 17 May.
Apologies for the tight time frames.
Executive Research Officer
ph: 0422 726 657
Friday, February 01 2013
by Brigid O'Connell, Herald Sun, February 1, 2013.
Max Smith is one of Victoria's 400 ever-smiling "little angels".
Children with the rare genetic disorder Angelman Syndrome have a trademark wide smile and ready laugh, despite enduring severe seizures, speech impairments and developmental delays.
But new clinical trial results, to be released today at a conference in Melbourne, will reveal that an acne medication is being used to reduce the devastating symptoms with great success.
Preliminary results from a US first-phase trial using the common antibiotic minocycline have shown improved behaviour, attention and communication in children with Angelman Syndrome. University of South Florida molecular researcher Dr Edwin Weeber said it was believed that the drug worked by increasing communication between neurons in the brain.
"We thought the deficiencies in Angelman Syndrome happened in utero, but we're now realising that the brain is intact, the wiring of the brain is correct but there is an overall reduction in communication in the brain," Dr Weeber said.
The conference, run by the Foundation for Angelman Syndrome Therapeutics Australia, will plan how to bring the next expanded phase of the trial to Australia. It's estimated that one in about 15,000 children will be diagnosed with the disorder, but many are wrongly diagnosed with cerebral palsy or autism.
Max's mother, Anne Murphy, said after finally being able to control his seizures and establishing regular sleep patterns, the positive findings from the trial had made up her "wish list".
"I love Max the way he is. I don't want his happy personality to change, but anything that improves his quality of life and communication would be fantastic, "she said.
Wednesday, January 23 2013
‘Developing cultures of respect in residential services for people with an intellectual disability’ is a research study being conducted by Professor Chris Bigby and Dr Patsie Frawley, from the Living with Disability Research Group at La Trobe University. This research is funded by the Disability Donations Trust through DHS.
Despite strong principles underpinning the disability service system, research and recent government reports show residents in group homes are not always treated with dignity and respect, and may experience serious incidents of abuse. This study will explore how staff, families and people with intellectual disabilities understand key principles of dignity and respect and how they are interpreted in group homes. It will also identify what is understood as abuse and neglect and how the ‘culture’ of group homes can support or prevent abuse. The findings will help to build cultures of respect in group homes, and develop strategies to change the social environments and interpersonal dynamics that have allowed abusive cultures to develop and be sustained.
Family members and staff who are directly associated with group homes, and people with an intellectual disability who live in group homes are invited to express their interest in participating in the research. Participation will involve a few hours of your time in an individual interview or in a small focus group. If you are interested please contact Patsie Frawley on 9479 3041 or email firstname.lastname@example.org who will provide you with more information. This study has been approved by the LaTrobe University Faculty of Health Sciences Ethics Committee.
Mail: La Trobe University, Plenty Rd, Bundoora, 3086
Application/Consent Form LINK
Sunday, December 30 2012
More than one billion people in the world live with some form of disability, of whom nearly 200 million experience considerable difficulties in functioning. In the years ahead, disability will be an even greater concern because its prevalence is on the rise. This is due to ageing populations and the higher risk of disability in older people as well as the global increase in chronic health conditions such as diabetes, cardiovascular disease, cancer and mental health disorders.
Disability is part of the human condition – almost everyone will be temporarily or permanently impaired at some point in life, and those who survive to old age will experience increasing difficulties in functioning. Disability is complex, and the interventions to overcome the disadvantages associated with disability are multiple and systemic – varying with the context.
Problems with service delivery:
Poor coordination of services, inadequate staffing, and weak staff competencies can affect the quality, accessibility, and adequacy of services for persons with disabilities.
People with disabilities were more than twice as likely to report finding health care provider skills inadequate to meet their needs, four times more likely to be treated badly and nearly three times more likely to be denied needed health care.
Many personal support workers are poorly paid and have inadequate training.
A study in the United States of America found that 80% of social care workers had no formal qualifications or training
Resources allocated to implementing policies and plans are often inadequate. The lack of effective financing is a major obstacle to sustainable services across all income settings. In high-income countries, between 20% and 40% of people with disabilities generally do not have their needs met for assistance with everyday activities
Inadequate policies and standards:
Policy design does not always take into account the needs of people with disabilities, or existing policies and standards are not enforced
Beliefs and prejudices constitute barriers to education, employment, health care, and social participation. For example, the attitudes of teachers, school administrators, other children, and even family members affect the inclusion of children with disabilities in mainstream schools. Misconceptions by employers that people with disabilities are less productive than their non-disabled counterparts, and ignorance about available adjustments to work arrangements limits employment opportunities.
Lack of provision of services:
People with disabilities are particularly vulnerable to deficiencies in services such as health care, rehabilitation, and support and assistance
Poorer health outcomes:
Increasing evidence suggests that people with disabilities experience poorer levels of health than the general population. Depending on the group and setting, persons with disabilities may experience greater vulnerability to preventable secondary conditions, co-morbidities, and age-related conditions. Some studies have also indicated that people with disabilities have higher rates of risky behaviours such as smoking, poor diet and physical inactivity. People with disabilities also have a higher risk of being exposed to violence.
Full Report - 300 pages - 3.9MB LINK
Report Summary - 24 pages - 1.2MB LINK
Friday, September 14 2012
A genetic test to predict a baby's risk of developing autism has been developed by Melbourne researchers, paving the way for earlier intervention to improve behaviour and functioning.
Research led by Melbourne University identified 237 markers in 146 genes that predicted a diagnosis of autism spectrum disorder in 70 per cent of cases.
Neuropsychologist Renee Testa said children were often diagnosed with autism at age three or four and only after there was "a significant and negative impact on a child's level of functioning".
Tuesday, February 28 2012
The Panel delivered the Report to the Minister for Community Services on 27January 2012. The Report was tabled by the Minister for Community Services in Parliament on 28 February 2012.
The Report is now available to the public.
It is split into three Volumes.
Volume 1 includes the Executive summary and Lists of recommendations, findings and matters for attention as well as an Implementation plan.
Volume 2 comprises eight parts and contains 23 chapters. For ease of downloading, this Volume has been divided into sections.
Volume 3 is composed mostly of the appendices.
If you would like to receive this publication in an alternative format, please contact 03 9096 0581 and email@example.com
Wednesday, February 15 2012
1 What are the community attitudes to people with disability in Australia and similar countries?
2.How do community attitudes affect social and economic inclusion in different life domains such as participation in education and employment, social networks, community, health, housing, support services, etc.?
3.What is the relationship between community attitudes to people with disability and their experiences and outcomes a) overseas and b) in Australia?
4.What are the community attitudes to specific groups of people with disability, including the person's characteristics such as disability type, age, gender, location,Indigenous, CALD (culturally and linguistically diverse), socioeconomic status?
5.What are the attitudes to people with disability as held by groups of people relevant to particular life domains (For example employers, managers and co workers in the employment domain; teachers and students in the education domain; formal and informal carers in the personal support domain) and relevant to particular life course stages (for example peers, teachers and other parents in preschool/primary school [pre¬puberty], high school [teenage years] and early young adult years)?
6.Can community attitudes to people with disability be changed (including which groups who hold the attitudes and to which people with disability) and if so how; what are examples of constructive attitudes to people with disability and case studies of ways to bring about social and economic inclusion?
7.What are the gaps in knowledge about community attitudes to people with disability in Australia as relevant to policy change and how could they be addressed?
8.To what extent do the existing datasets support the ability to infer outcomes regarding people with disability? Where are the data gaps where inference is not possible?
We know from considerable national and international literature that negative community attitudes towards people with disability affect their quality of life in the important life domains of education, employment, health, housing and social networks. Negative attitudes are more likely to be experienced by particular groups of people with disability, such as women and people with intellectual or psychiatric disability.
Research evidence about the impact of negative community attitudes towards people with disability on their outcomes across various life domains is scant. However, there is a strong conceptual link between attitudes and outcomes. This link is also suggested and supported by the literature reviewed in this report.
Australia has some datasets that include indicators of outcomes for people with disability from which the impact of negative attitudes can be inferred, but no large or longitudinal attitudinal data are collected. Options for addressing this research gap in Australia are: include a disability module in existing longitudinal data collections; access relevant administrative datasets; and design specific disability attitudes surveys of people with disability and other members of the public. International examples of data collection could be used to inform survey development in Australia, and a good model would be the BSA survey.
Australian and international policies to change community attitudes to people with disability operate at the levels of personal, organisational and structural change. Few of these policies have been evaluated. An option to inform policy change would be to review the effectiveness of existing policies and programs in Australia.
Strategies to change community attitudes seem to be most effective when they include policies at all three levels (personal, organisational and structural), include people with disability in the design and implementation of the policies, are sufficiently prolonged and resourced to reinforce positive attitudes and replace negative attitudes, and address the diversity of disability experience.
Tuesday, January 24 2012
Theory that children can 'recover' from autism is controversial UK Daily Mail, 24th January 2012
Children or teenagers diagnosed with autism alongside early hearing problems were less likely to be considered autistic later on
Development: Children or teenagers diagnosed with autism alongside early hearing problems were less likely to be considered autistic later on
Many children diagnosed with autism at a young age no longer display symptoms when they are older, researchers say.
A study published in the journal Pediatrics, found one-third of youngsters who had ever been diagnosed with an autism spectrum disorder no longer had the diagnosis at the time their parents were surveyed.
The researchers noted in their report, published in Pediatrics, that past studies have also found some children who originally have an autism spectrum disorder eventually lose that diagnosis and are no longer considered autistic.
However, whether this is due to a mistaken first diagnosis or actual changes taking place in their brains is controversial.
A team, led by Dr Andrew Zimmerman from Massachusetts General Hospital for Children, studied data from a phone survey of 92,000 parents of children aged 17 and younger in the U.S in 2007 and 2008.
In total, 1,366 said their child had a past or current diagnosis of an autism spectrum disorder. In 453 of those cases, children had been diagnosed by a doctor of having a disorder but parents said they didn't have one any more.
Thursday, December 15 2011
Many of the findings of this social work review can be applied to disability services in Australia.
Professor of Social Policy at the London School of Economics, Professor Eileen Munro, spoke on the ABC’s “7:30 Vic”, on Friday 9 December 2011, about Victoria’s ongoing child protection problems.
Professor Munro considered there was too much red-tape. There was too much focus on compliance with the state’s gigantic set of regulations, rather than focus on the needs of the child
The professor's first report on children’s social work, released in October 2010, explains that social workers are hindered by an over-emphasis on complying with rules and regulations, limited time with service users, and a target-driven culture.
Professor Munro stated that previous attempts at reform led to social workers spending less time with vulnerable children and families, and thus their needs are not being met. The key observations put forward include:
• There is an over-emphasis on complying with rules and regulations.
• As a result, less time is spent actually assessing the needs of children.
• Too much time is spent on administrative tasks and completing documentation.
• A target-driven culture is stopping staff from exercising professional judgement.
• Delays in the family court system have had a negative impact on children.
• Social workers are often blamed when children are harmed.
The first four dot points can be equally applied to disability services, especially government direct care services – Group homes, for example.
Direct care staff in many DHS group home are overloaded with rules and regulations (red-tape). A very large percentage of staff time is spent on paperwork and domestic work - frequently most - often all.
In comparison, little time is spent with the residents on developmental interaction – person centred active support and positive behaviour support. That which frequently has a positive influence on reducing negative behaviours - improving the person’s quality of life and social acceptability.
Professor Munro suggests bureaucratic forces have come together to create a defensive system that puts so much emphasis on procedures and recording that insufficient attention is given to developing and supporting the expertise to work effectively with children, young people and families.
The level of increased prescription for social workers, while intended to improve the quality of practice, has created an imbalance. Complying with prescription and keeping records to demonstrate compliance has become too dominant. The centrality of forming relationships with children and families to understand and help them has become obscured.
Reform of the social work profession should significantly improve outcomes for children and young people by making best use of available evidence about what helps to resolve the problems in children’s lives.
There is an urgent need for a similar review into disability services in Australia, not just rely on the potential for ISPs (Independent Support Packages), money in the consumer’s pocket, to drive service quality.
Purchasing services for those with complex needs, is far removed from choosing or swapping ones telephone provider.
The Munro Final Report
Saturday, December 10 2011
"A peek at an excellent, must have, publication!"
Active Support is a systematic approach to assisting people with disability to become engaged in a range of everyday activities that are meaningful to them and enhance their quality of life. It is a person-centred approach, in that the support provided is individualised according to the interests and needs of each person supported. Furthermore, it is an evidence-based approach to providing support.
Over the past 30 years research has consistently demonstrated that where Active Support is implemented, people with disability do become more involved in everyday activities, acquire new skills, show improvements in mental health and show positive changes in their behaviour. Importantly, Active Support can benefit people with a range of support needs.
However, some of the greatest successes have been observed when it has been applied to the support of people with extensive to pervasive support needs and/or severe challenging behaviour (Stancliffe, Jones, Mansell, & Lowe, 2008).
Jones and colleagues (2010) define Active Support as a service model designed to make sure that people who need support have the chance to be fully involved in their lives and receive the right range and level of support to be successful' (p. 3).
Essentially, Active Support involves training staff in specific skills and procedures to focus their work on the direct support of people in meaningful activity, and to establish formal systems that allow for the ongoing evaluation and modification of service provision informed by measurable outcomes for individuals.
Active Support provides both a philosophical and a structural framework tor organisations and their direct support staff. These various aspects of Active Support at an operational level are summarised by Mansell and colleagues (2002) in terms of:
• Everyday activities - People with disability are offered a wide range of everyday activities to become involved in, both in their home and out in the community.
• Teamwork - Support staff work together as a team to generate ideas and plan for available opportunities. This requires staff to plan activities and collaborate to determine who will do what and when, to ensure that opportunities are not missed and that support is provided in a consistent way.
• Recognising every moment has potential - Staff recognise that the people receiving support are able to engage in parts of every task or activity, through appropriately tailored support to achieve completion of individual parts.
• Outcome measures - Staff closely monitor and record the level of engagement in everyday activities of the people being supported and the form and level of support required to achieve maximum engagement. Regular person-centred meetings provide staff with opportunities to monitor their own service achievements and update colleagues on how to implement new strategies.
Whether to address the needs of people with high support needs, people with behaviours of concern, or people with disability more generally, to sustain the changes made at the individual level the organisation as a whole must look at systems and procedures to ensure they are compatible with Active Support. Personnel practices that encourage staff development and teamwork at all levels are essential, to ensure an environment that is knowledgeable and skilled, and which promotes opportunity, choice and respect for human rights. A developmental and action learning focus in which the organisation is committed to obtaining important measures and holding itself accountable to further and continuous growth is also essential to keep Active Support fresh and viable.
Purpose of this guide:
There are a number of good resources already available to support the professional development of staff in Active Support. However, this guide is the first to specifically address organisational and management issues relating to the establishment, implementation and continuous growth of Active Support at an organisational level.
To date, organisations have typically drawn on either one or a combination of two training resources. The training package developed by Jones et al. (1996/2010) focuses on the practical application of the Active Support principles and includes designs for the delivery and recording of meaningful activities and opportunities.
The training materials developed by Mansell et al (2004) place an emphasis on staff culture and the philosophical values behind Active Support. Both training packages emphasise opportunities for «art to develop specific skills to enable the planning, delivery and evaluation of support for people with disability, and both emphasise the importance of delivering these professional development opportunities using structured workshops conducted in conjunction with on-shift mentorship programs.
Furthermore, details of how to conduct mentorship programs, sometimes referred to as interactive training, are described in Toogood(2010).
However, much more than just staff training is needed to establish and sustain Active Support. Indeed, Active Support is much more than just an approach to staff training and direct service delivery. It is both a philosophy and a system to advance major organisational development in services supporting people with disability.
Consequently, there needs to be a well thought through organisational approach, and a soundly established organisational infrastructure. Discussion among service providers in Australia and elsewhere has highlighted that the different cultures and available resources within support services has resulted in the widely varied implementation of Active Support across organisations.
Successful organisations will often have a certain level of readiness prior to engaging in Active Support. Much of the background information needed by organisations and the practical details of what needs to be done to prepare for, implement and sustain Active Support to date has been passed by word of mouth via various trainers, or discovered by organisations as they go about the implementation process - often when unforseen challenges have been encountered.
This guide has been prepared to help fill that information gap, with respect to the organisational issues that affect the success of Active Support.
Without being prescriptive with respect to how Active Support is to be implemented, the guide provides a menu of implementation options that will support organisations to adapt Active Support to their own settings and cultures, while still remaining consistent with the procedural integrity accessary to achieve the well-established person-centred and evidence-based outcomes associated with Active Support.
As this resource is focused entirely on how to implement Active Support at an organisational level and how to go about setting up services and preparing individuals for the implementation of Active Support, it is not intended to replace the existing training packages.
Rather it complements these training packages by supporting boards of management and service managers to prepare and plan for a consistent service response prior to commencing staff training, during the implementation of Active Support, and when embedding and sustaining it within their organisation.
For further reading on how to implement staff training in person-centred Active Support, we recommend reading:
• Person-centred Active Support: A multi-media training resource for staff to enable participation, inclusion and choice for people with learning disabilities (Mansell, Beadle-Brown, Ashman, & Ockenden, 2004).
• Active Support: A handbook for supporting people with learning disabilities to lead full lives (Jones et al., 2010)/
• Interactive training: Supporting people with severe and profound intellectual disabilities in meaningful activity (Toogood, 2010).
"The impetus to always keep CRUs looking clean detracts from the need to provide support to residents" - see attachment from the OPA.....
Tuesday, November 29 2011
On 1 July 2010, OPA invited staff and Community Visitors to attend a meeting about community residential units (CRU’s).
The purpose of this meeting was to gather information that could be used by Reinforce’s working group on ‘Best Practice in CRUs’.
A summary of the discussions at this meeting is contained in a document now available on the OPA website at:
Monday, November 21 2011
Experiences of Restrictive Practices: “A view from people with disabilities and family carers”
Some extracts/key findings from the Report:
• The report finds that advocates and families often have to fight to the very top for their views to be heard – page 2.
• The report finds that restrictions are never recorded but are implemented by staff to maintain overall control of a setting – page 2
• The report finds services are withdrawn, changed or reduced where staff attitudes are negative – page 2
• The report finds that because of the behaviour of a few clients, other clients have had to sacrifice rights and choices –page 3.
• The report finds that there should be an open door policy for families and advocates – page 3.
• The report finds that behaviours of concern is a potential for lack of staff interaction with clients – page 3.
• The report finds the department (DHS/DS Victoria) should listen to the voices of people with disabilities, families and carers (customers) – page 4.
• The report finds that the department (DHS/DS Victoria) should work with families and people with disabilities, collaboratively and cooperatively –page 4.
• The report finds that families, carers and advocates should have access and scrutiny rights – page 4.
• The report finds that there should be a review of incident reporting mechanisms at department (DHS/DS Victoria) level page 4.
LISA Comment: Our restrictive practice and questionable activity findings are these and many, many more, for which the department is in total denial, with its reactive management compounding service level and quality problems for clients, in preference to staff welfare.
LINK to Full Report