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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.
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Monday, July 29 2013

Comments from a staff team who ran a DHS
group home like it was their own business

Practical Active Support:

Active Support is an approach aimed at supporting people with disabilities to become more involved in the day-to-day activities within their home.

A number of DHS houses have had staff undertake training, and piloted the approach. A staff member from one such group home, back in 2005, made the following observations about the implementation of the approach.

Residents:

The residents are all interested in the activities and seem to really enjoy the positive nature of these interactions.  Boredom has been greatly reduced and there has been a decrease in challenging behaviours. The environment in the house is happier, with more opportunities for residents and staff to engage in positive activities and interactions. In fact, one of the residents now frequently congratulates himself with phrases such as "Good work" and ‘Good cook’.

Staff:

It quickly became obvious that this initiative would be very much "staff driven" and that the success (or lack of) would be directly influenced by the imagination, enthusiasm and determination of staff to put in the thought and effort required.

It was necessary for us to adjust our way of doing and thinking to accommodate the concepts of active support. This is an ongoing process, but we have gradually ‘grown’ into these new habits and this is happening at an ever-expanding rate.

The most significant change for staff has been in our perceptions of how we see the people we work with. We are now definitely more "ability" orientated in the way we look at the residents.

Instead of looking at the challenges that some people's disabilities present, we are now looking at what each person may be capable of, and presenting the activity in a way that is most likely to succeed and be enjoyable.

We have also greatly reduced the amount of tasks that we automatically carried out on the resident's behalf. Instead, it has virtually become automatic to look at how we  can involve any or all of the people living in the house”

Posted by: HATTON AT 04:54 am   |  Permalink   |  0 Comments  |  Email
Sunday, May 19 2013

Department of Human Services, Disability Services, Victoria

Increase in board and lodging fees for the residents of department managed group homes

This information sheet has been developed by the department to respond to frequently asked questions about the Board and Lodging Fee, to be implemented from December 2013, for people with a disability living in department managed group homes.

Residents are concerned the new fee doesn't seem fair - how much is the department going to contribute to the cost of supported accommodation?

The new board lodging fee will bring the average contribution per resident for supported accommodation to approximately $17,500 per annum. The average cost to Government to support a resident in department managed supported accommodation is $128,000 per annum. The fee will cover most of a residents' day to day living expenses.

Who received notification of the new Board and Lodging Fee?

The new Board and Lodging Fee applies to group home residents who pay rent to the Department of Human Services (the department). In-line with section 66 of the Disability Act 2006, notice of the new fee structure including a fee increase was sent to each resident and their administrator. This is the same notification process that has been used for all previous fee increases.

The Department has provided seven months notice of the change (the Act specifies that only two months notice be provided when implementing a fee increase). This was to provide people with an opportunity to understand the change and how it will impact their individual circumstances.

The department is also providing information about the new fee to external stakeholder groups including the Disability Services Commissioner, the Office of the Public Advocate and VALID.

How can staff assist residents and their administrators?

An announcement to staff in relation to the new Board and Lodging Fee was made as early as possible. A comprehensive staff information plan has been developed and will be implemented over the coming months. The plan includes information bulletins such as this Frequently Asked Questions bulletin, divisional information sessions and working groups.

Divisions will be collating issues raised by staff, residents and administrators to ensure that the development of communications materials respond to those specific concerns.

Can we have more detail about how Board and Lodging will work? For example, how much money will be allocated to each group home for food?

The information to residents, administrators and disability accommodation staff, distributed from 3 May 2013, only notified people of a change to the fee structure for department managed group homes and that this would include a fee increase.

Work has commenced to review current policies and practice and to identify changes that are required to implement the new fee structure. Divisional working groups will commence shortly to progress this work over the coming months and will utilise the experience of operational staff to ensure effective policy development.

Detailed information will be provided to staff, residents and administrators as this work is finalised.

What will the actual dollar amount of the new Board and Lodging Fee be?

The next increase to Centrelink payments, including the Disability Support Pension and Commonwealth Rent Assistance (Rent Assistance) payment, will occur on 20 September 2013. The actual dollar amount of the new Board and Lodging Fee cannot be calculated until the amount of this increase is known.

As a guide only, if the new Board and Lodging Fee was applied at the current rates of Disability Support Pension and Rent Assistance, the dollar amount would be approximately $1460 per month.

Note: If residents or administrators enquire, this figure should only be used as a guide to assist them in understanding the impact of the fee increase to be implemented on 1 December 2013.

How can residents dispute the notice of increase with VCAT within 28 days if they don't know the actual dollar amount?

The notice of fee increase provides sufficient detail about how the fee will be calculated and what will be included in the fee to enable a resident or their administrator to apply to VCAT to dispute the notice.

How will the implementation of the new fee impact the workload of house supervisors, operational managers and CERS officers?

When the Board and Lodging Fee is introduced, the overall process for managing housekeeping funds in a group home will be similar to the current process. Review of current policies and practice has identified opportunities to reduce workload and in some cases remove some activities entirely, such as the completion of housekeeping plans.

Developments, such as the introduction of Westpac Debit Mastercards, will reduce workload and provide greater flexibility in how finances are managed in the group home. For example, staff currently make multiple trips to the ATM over several days to collect sufficient funds to pay large utility bills. This will no longer be required as the Debit Mastercards enable online and telephone purchasing. Also, utility bills will not be paid by group home staff after 1 December 2013.

The divisional working groups will further consider opportunities to achieve workload efficiencies.

Who will apply for the Rent Assistance payment?

It will be the administrator's role to advise Centrelink that the resident's accommodation details have changed. Centrelink will then assess the person to determine if Rent Assistance is payable. The Rent Assistance will be paid directly to the resident via their administrator.

The department will work with Centrelink to discuss opportunities to ensure this is a smooth administrative process for residents and their administrators. Further advice will be provided closer to the implementation of the new Board and Lodging Fee.

What if the administrator does not apply for Rent Assistance or is considered ineligible?

The Board and Lodging Fee is equivalent to 75 per cent of the Disability Support Pension and 100 per cent of the Rent Assistance. If the person does not apply for the Rent Assistance, they will still be required to pay the equivalent amount.

If the person is not eligible for Rent Assistance as a result of the Centrelink income test, they will still be required to pay the equivalent amount of the full Rent Assistance payment.

If the person is not eligible for the Rent Assistance for other reasons, this will be considered on an individual basis.

Residents might have other income, such as Mobility Allowance payments and Continence Aids payments. Is this income considered in the calculation of the Board and Lodging Fee?

No. The Board and Lodging Fee will not consider other sources of a person's income, such as other allowances or subsidies that a person may receive to assist them in meeting their personal expenses.

What happens if a resident or administrator feels they cannot afford the new Board and Lodging Fee?

The Board and Lodging Fee will affect the income of individuals in different ways and should be considered on a case by case basis.

The Department has provided seven months notice of the change (the Act specifies that only two months notice be provided when implementing a fee increase). This was to provide people with an opportunity to understand the change and how it will impact their individual circumstances.

If a resident or their administrator feels they are unable to afford the new Board and Lodging Fee an application can be made for consideration under the 'Undue Financial Hardship' process.

What does the Undue Financial Hardship process involve?

An application form is completed by the administrator that provides details of the resident's total income and expenditure. The application also seeks additional information that should be taken into consideration. For example a resident may have very high medical costs not covered by Medicare or the Pharmaceutical Benefit Scheme that need to be considered.

Support will be provided to staff and managers involved with this process including additional guidance around application of the policy and systems to ensure consistent decision making across the state.

Will there be reimbursement processes for residents who don't consume food because they use a PEG tube or because they are absent from the group home?

There will still be a process for reimbursing residents whose food intake is significantly reduced. The method for assessing and calculating reimbursements will be reviewed through divisional working groups to ensure there is consistency across all department managed group homes.

How will the Board and Lodging Fee apply to residents of Plenty Residential Services and ex-St Nicholas group homes who already pay a Board and Lodging Fee?

The new Board and Lodging Fee of 75 percent of Disability Support Pension and 100 percent of Rent Assistance will apply to all group homes where residents pay rent to the department. This includes ex-St Nicholas and Plenty Residential Service group homes.

The letter that was sent to residents and families in early May 2013 provided a generic list of inclusions that will be provided to all people paying a Board and Lodging Fee.

Residents of ex-St Nicholas and Plenty Residential Service group homes will continue to be provided with the same service items that they currently receive.

New residents who move into ex-St Nicholas and Plenty Residential Service group homes will receive the same service items currently provided in these group homes.

How will finances be managed at Singletons Equity, Housing Choices Australia and private rentals?

The Board and Lodging Fee only applies to residents who pay rent to the department.

If residents pay rent to a different provider, such as a housing association there will be no change to how expenditure is managed in their homes.

Will residents still be able to share the cost of some items?

Yes. Where more than one resident agrees to share the cost of something, for example regular newspaper delivery or the care of a pet, this can be done through each residents financial plan.

What changes will there be to the process of allocating and maintaining Westpac Debit Mastercards?

There will be some changes to the process for allocating Debit Mastercards to staff and for maintaining this information. These changes are designed to resolve many of the issues that are raised regarding the current process which appears to vary significantly in its efficiency across the state.

Further development of the process associated with allocating and maintaining Debit Mastercards will be progressed by divisional working groups.

Posted by: HATTON AT 02:32 pm   |  Permalink   |  0 Comments  |  Email
Friday, May 10 2013

Culture of fear throughout…

Throughout the range of support services for vulnerable people, disability and aged-care, there is a traditional culture of fear to speak out – fear to question – fear to even ask. 

Within the disability field, fear of intimidation and retribution is the number one reason sighted  by the ODSC as why families are reluctant to report questionable service occurrences which, directly or indirectly, adversely affect their family member with a disability.    

Overall, there is a traditional culture which considers people are good-kids if they can get something for nothing – wrought the system.  And, there is the public service culture which considers those who report questionable occurrences are undesirables, and are treated as such to ensure they don’t do it again.  The message being - no dobbing .

Translated into practical terms, public service management of direct care services for people with disabilities do not want the problem, the politics and the paperwork of having to deal with a situation where one staff member is reporting on another, or reporting client abuse and/or intimidation.  Or, the politics and paperwork where items on public service property, considered fair-go by the good-kids, go walkabout. 

Public service reactive management consider it is far easier to stop or persecute the person reporting.  This sends a clear message to that person, and those thinking of doing similar, not to report on others.  Thus relieving public service reactive management of man-management problems.  Turning a blind-eye to the questionable activities of the ‘fair-go, good-kids’, saves undesirable effort, politics and paperwork.

Fear extends to CSOs who take funding from government departments  These departments consider the supply of funding gives them the right to treat CSO in any way they like, even their peak body, NDS, is not immune from government department intimidation.

The amount of energy and resources used in bureaucratic manoeuvring is awesome in comparison with that used in providing meaningful support services to those for whom the whole service system is intended – vulnerable people.

Apart from the adverse effect on those for whom the support services are intended, one of the most disappointing factors of this political-warfare is the effect on those having just done various training courses, where they are taught the  important aspects of providing quality of life care.  Whereas, when they arrive at a care facility, all keen to implement what they have learnt, they are told by traditional minder-care staff, “We don’t do all that rubbish here, and you had better not either!”

There is a similar culture amongst police.  Cadets are taught at the police academy all the good things they should do when they graduate.  They arrive at their first station, after their training, all keen to get on the streets and apply what they have been taught, only to be confronted by the duty sergeant who tells them, “We have enough to do without you going out looking for problems – sit quietly behind that desk!”

During the four year period Heather worked, as an ACRACS in various aspects of the disability field, especially supported accommodation group homes and similar, she had to be actively discouraged from reporting the abuse and intimidation of clients, as she would have been seen by department management as a trouble maker, and we needed her behind the closed-doors of the facilities as long as possible.

It is standard practice in the public service, and in many captive market organisations, that those who report problems or, attempt to improve the service for those for whom it is intended, are treated as shocking trouble makers and persecuted for ever more.  Whereas, the perpetrators are, at worse, just moved to another facility to repeat their questionable activities.                 

Posted by: HATTON AT 09:43 am   |  Permalink   |  0 Comments  |  Email
Tuesday, March 05 2013
  1. They fear retribution and intimidation of their vulnerable family member and themselves, and the threat of service withdrawal or reduction,
  2. They don't fully understand their rights to service level and quality,
  3. They don't want to be seen as a whinger,
  4. They don't fully understand the service process,
  5. They have concerns about how complaining will affect their relationship with service management and staff,  
  6. They have insufficient information on how or where to complain,
  7. Their previous negative experiences of complaining, put them off,
  8. They don't 'know' anything other than the service they're receiving and,
  9. They feel, complainants can lose more than what they have lost as a result of that which they were complaining about.
Posted by: Hatton AT 05:02 pm   |  Permalink   |  0 Comments  |  Email
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.
Posted by: Hatton AT 05:52 pm   |  Permalink   |  0 Comments  |  Email
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 p.frawley@latrobe.edu.au who will provide you with more information. This study has been approved by the LaTrobe University Faculty of Health Sciences Ethics Committee.

Email: p.frawley@latrobe.edu.au
​Mail: La Trobe University, Plenty Rd, Bundoora, 3086

Application/Consent Form LINK

Posted by: Hatton AT 04:43 pm   |  Permalink   |  0 Comments  |  Email
Tuesday, October 02 2012

Matthew Potocnik has faith in the power of art to stir empathy and promote understanding.

The Brunswick resident's experiences as a father and disability advocate have shaped his recent work, a maquette (or small scale model) he calls, "The Gatekeeper".

It is a complex and harrowing piece, attempting to convey how bureaucracy can affect the family of a child with a disability.

Among the features are a Dattesque weeping eye, a belt of keys and a vague formless face Potocnik says represents how accountability can be lost. The "sea-urchin face" he says, is "almost like a Vietnamese fish trap, where you can swim in, but you can't swim out There is also an innocent child clutching a key triumphantly - a concession to hope.

Potocnik wants a commission to built the statue at the Victorian Equal Opportunity and Human Rights Commission in Lygon Street. He says it would remind visitors of the lives affected by disability, lives sometimes forgotten.

It is days after Potocnik's 50th birthday, eleven years ago, he celebrated the day by bringing his son Levi home from the hospital.

Levi was born with Angelman Syndrome. He can't walk or talk and experiences seizures and sleep disruptions. He requires constant care.

Potocnik says his son communicates with his eyes and through smiles. "Our son is the epitome of cheeky innocence; he has such a lot of character".

"His condition means he is a very happy and giggly small child. When we can get help looking after him, the people love him."

For years Potocnik and his wife fought to secure regular funding to support Levi. The couple attempted to juggle work,- caring for their son and going through the stress of having to reapply for assistance regularly.

Last year the pressure took its toll on the family; funding couldn't be found, the couple's health failed and both were hospitalised. For six weeks Levi was placed in emergency care.

"The government policies sound really good, but they are under resourced and under supported," he says.

"When people have to give up their child because they can't get support - that is a disgrace."

The family recently won funding from the Department of Human Services through an individual Support Package.

The family contributed to a report by the Victorian Equal Opportunity and Hurnans Right Commission, and Potocnik unveiled his sculpture at the report's launch this year.

He hopes his art helps people understand that difference has a place in the community.

"I want my art to educate people in the broader community about human tights, the function of bureaucracy and the empowerment of the individual."

Pictures of the "GATEKEEPER" - LINK

LISA Comment: Matthew has, in his various roles, been a fighter for people with disabilities for many years.

Like most of us, he has beaten his head against the bloody minded bureaucratic barriers to common sense.

We believe his "Gatekeeper", outside DHS HO Victoria, is to depict the department's despotic gatekeeping attitude towards people with disabilities and their families ...

This is the bureaucratic "power over people in a captive market" which the DHS wield over the lives of vulnerable people - people with disabilities and their families.

Comment: There is a dire need for a Royal Commission to investigate disability service provision in the State of Victoria. The bureaucracy, which has to be fought and negotiated with in order to procure an already promised ISP, is deceitful and damaging to families who are already suffering emotional and financial hardship.

Posted by: Hatton AT 05:27 pm   |  Permalink   |  0 Comments  |  Email
Sunday, September 02 2012

The show will be repeated on Wednesday 5 September at 1pm on SBS One and 7.30pm on SBS Two. You can watch it on Wednesday on the Insight website: sbs.com.au/insight. Insight will also be hosting a virtual forum on its Facebook page on Thursday 6 September at 1pm. Acting Commissioner Karen Toohey will be online to talk about the issues raised on the show, and the bigger picture problems and potential solutions.

Families of children with profound disability are reaching breaking point.

It’s one of the toughest decisions a parent could face: whether to hand over a child with a disability to the care of the state.

A report by the Victorian Equal Opportunity and Human Rights Commission found that in Victoria alone, an average of 50 children are relinquished every year. With inadequate respite, many families of children with disabilities are struggling to cope.

Will a new national disability insurance scheme make a difference?

In an emotional and honest discussion, we hear from people with a disability, their families and the government about the extraordinary challenges they face.

Producer: Meggie Palmer
Associate Producer: Hannah Meagher

Meet the Guests

Rogers Family – Pam, Geoff, Mason and Emma

The Rogers family experienced both relief and grief when they handed over care of eight year old Boyde to the state. Boyde has an intellectual disability and challenging behaviours including ‘pica’, which means he tries to eat non-food items like stones, grass and faeces. He requires 24/7 care. Boyde’s parents Pam and Geoff say they decided to relinquish care because the lack of government support to look after Boyde was putting a strain on their marriage and on Boyde’s siblings.

Graham Family – Coralie, Susan and Kris Shepherd

Coralie says handing over care of her son to the state was the hardest decision she’s ever had to make. Joel has needed constant care ever since a medical procedure went wrong and he sustained a brain injury as a toddler. Since relinquishing Joel when he was 18 years old, Coralie has remained an active part of his life.

Sandra and Ely Pleitez

Ely and her mum Sandra are together all day, every day. Twenty-two year old Ely has a rare degenerative disease, Ataxia-telangiectasia, which affects her nervous system and muscle control, making it hard for her to speak and write. Her mother receives no regular respite. Sandra says she when she applied for respite she was told that there were other needy people in line ahead of her. Ely worries about who will provide her full time care into the future.

Sarah Carter Murray

Sarah is on the brink of giving up care of her son Christian. Six year old son Christian was born with a rare genetic syndrome. He is extremely hyperactive and requires 24 hour, one on one care. As a full time carer, Sarah struggles to juggle Christian’s high care needs with those of her three other children.

Meggie Palmer, Insight Producer SBS Television, 14 Herbert Street, Artarmon, NSW, 2064 p: 02 9430 3689 l m: +61 400 060 104
Email: Meggie.Palmer@sbs.com.au - www.sbs.com.au/insight

PREVIEWLINK

Posted by: Hatton AT 06:44 pm   |  Permalink   |  0 Comments  |  Email
Thursday, August 02 2012

Article 40 of the Convention on the Rights of Persons with Disabilities stipulates that “The States Parties shall meet regularly in a Conference of States Parties in order to consider any matter with regard to the implementation of the present Convention.” Since 2008, four sessions of the Conference of States Parties have been held at United Nations Headquarters, New York.

The fifth session will be held in September 2012. The theme is “Making the CRPD count for Women and Children”. The following are the sub-themes of the Conference: “Technology and Accessibility”, “Children with Disabilities” and “Women with Disabilities”.

More information on the fifth session can be found at: http://www.un.org/disabilities/default.asp?navid=46&pid=1595

The Commission invites interested organisations to submit proposals that meet the criteria of the Commission’s international participation program

Networking/capacity/capability building events that will enable Disability Peak Organisations (DPOs) and Disability Advocacy Organisations (DAOs) to promote the work of the UN Convention on the Rights of Persons with Disabilities (UNCRPD) and/or meet Australia’s obligations under the UNCRPD.

Networking/capacity/capability building events that will enable DPOs and DAOs to promote the priorities under the National Disability Strategy (NDS)—Key Policy Area 2: Rights protection, justice and legislation.

Proposals should Disclose any other sources of funding available to them

Indicate need and justification for funding including any particular needs related to location and impact of disability on travel costs

Address each of the criteria identified in the Commission’s published template for nominations.

Information on how to apply for funding is available at: http://www.humanrights.gov.au/disability_rights/convention/funding_faq.html

Proposals are requested by COB Friday 17th August, 2012

Posted by: Hatton AT 04:19 pm   |  Permalink   |  0 Comments  |  Email
Tuesday, July 10 2012

VALID Inc. is conducting FREE workshops to provide people the opportunity to strengthen their understanding and knowledge about Individual Support Packages.

Would you like to learn more about how to manage your ISP? Workshops are for people with a disability and/or their family members.

NEXT WORKSHOP DATES 

REGISTRATION FORM

Posted by: Hatton AT 04:47 pm   |  Permalink   |  0 Comments  |  Email
Wednesday, July 04 2012
Posted by: Hatton AT 04:55 pm   |  Permalink   |  0 Comments  |  Email
Tuesday, July 03 2012

Most families with an adult member in a supported accommodation group home and/or a day centre, have major concerns as to just what is happening to their vulnerable family member behind the closed-doors of these facilities - given many have few meaningful checks and balances, and little transparency.

Those group homes funded by the Department of Human Services, are subjected to visits by members of the community visitor program, under the Disability Act 2006, managed by the Office of the Public Advocate (OPA).

At present there is no independent evaluation of day services, where the outcome reports are available to families/the public.

Community visitor reports are not available from the OPA, as the OPA is not subject to FOI (Freedom of Information), CV reports are, however, available for all group homes funded by the DHS, under FOI from DHS Head Office in Melbourne - at a charge of $24.40 per FOI request.

Just make a simple written request to:
DHS, FOI: Manager, FOI Department, Department of Human Services,
50 Lonsdale Street, MELBOURNE 3000
Dear Sir, I request under FOI, copies of all the Community Visitor Reports for SSA, group home, at ……………………………, for the period, ………. to-date.
​Yours sincerely,.........

And, include the fee. Response time can be anything up to two months. But it’s worth the wait to see the CV view of the service

Posted by: Hatton AT 04:58 pm   |  Permalink   |  0 Comments  |  Email
Wednesday, June 13 2012

The Parliamentary Secretary for Families and Community Services, Andrea Coote MLC, launched a new resource titled "Peer Support".

This is a guide to how people with a disability and carers can share what they know about self-directing their supports. It acknowledges the value of the collective wisdom that people with a disability and their supporters hold and the benefits of people sharing that wisdom and personal experience with each other.

The guide reflects the experiences and opinions of this diverse group of people.

There are limited number of printed copies to distribute, if there are particular organisations or people who you think could benefit from this guide, please contact Eilis Hughes on eilis.hughes@dhs.vic.gov.au and she will organise for copies to be sent.

Posted by: Hatton AT 05:12 pm   |  Permalink   |  0 Comments  |  Email
Thursday, June 07 2012

Care for those with limited intellectual capacity (intellectual or multiple disability) has moved from ‘traditional institutions’ to ‘self directed approaches’(living in the community with circles of support).

Many traditional institutions were little more than confinements. They were built on very large blocks of land to help allay public fears, whilst the bureaucrats claimed the residents needed ample room for activities. In practice, the land was mainly isolation/privacy, as few outside activities occurred in comparison with the large land allocation of most institutions

This traditional isolation/privacy has been retained in many government mini-institutions – government group homes in the community. Community access for the residents of many government group homes, is often just a drive-around with staff in the front, and the residents in the back of the house mini-bus.

Life within many government group homes is ‘paranoid-silo-privacy’, where families are discouraged from knowing each other, or from knowing anything about the other residents. They are told, for example, their son or daughter enjoyed a co-resident’s birthday party. They are told their son or daughter went here or there with a co-resident. Names are never mentioned!

Those with almost any level of reduced intellectual capacity have a lifestyle many, many times less than the general population. They are effectively in confinement and isolation, given their limited lifestyle, through their limited ability and comprehension

They certainly don’t need more isolation in the form of the service provider inflicting ‘paranoid-silo-privacy’ on them. They need a lifestyle which is as open as possible, to compensate for the natural isolation created by their limited ability. They need an, ‘all-family-friendly-home’ and ‘Circles of Support’ to help break the isolation of their limited capacity. ‘Circles of Support’ are totally opposite to Paranoid-Silo-Privacy.

Parents are often the only people who take a great interest in protecting the interests of their sons and daughters. Yet we know that in order for people to have good lives into the future, it is desirable that they have friendships and relationships with other people who take a real interest in their lives.

People who have disabilities are more vulnerable and will be for the whole of their lives. They will need people in their lives, who like and know them well and even love them, who will stay close to them, advocate for them and ensure that their dreams for 'a good life' are fulfilled.

Service providers, especially government direct care services need to understand how and why their traditional ‘Silo-Privacy’ add to the natural isolation of those with limited intellectual capacity, and learn how to provide support to people, their family, friends and their support staff to aim for family friendly togetherness.

Parents have often held life long, protective, practical roles of all kinds. They often need to be shown that others can provide their family member with real quality of life care in an open and friendly environment, rather than silo style living practiced in many group homes – especially government direct care group homes.

Circles of Support increases the social networks for people who have been institutionalised, or are at risk of being institutionalised by ‘Paranoid-Silo-Privacy’ in group homes.

Circles of Support & Self Directed Approaches

Posted by: Hatton AT 05:24 pm   |  Permalink   |  0 Comments  |  Email
Wednesday, April 18 2012

Wes Hosking, Herald Sun, Melbourne, April 18, 2012

A boy, 3, and his mum were berated for sitting in a train's special-needs seats because he didn't appear to be disabled.

Brooke Stein was reduced to tears after an elderly woman began ranting at her and son Alex, whose disabilities include cerebral palsy and epilepsy.

The woman even told other passengers on the city-bound service from Warrnanbool last month that the pair were in the wrong spot and wouldn't move.

"I was just dumbfounded," Ms Stein said. "I physically couldn't look at her, I was so upset. "I have never come across it before in my life and I did not expect I would."

A disability group and V/Line have pleaded for greater understanding, amid reports of special-needs passengers being given the cold shoulder simply for using areas they are entitled to use.

The Grovedale mother and her son boarded the train at Marshall station in Geelong. They were on the way to an appointment at the Royal Children's Hospital.

They are entitled to use special-access areas on pub¬lic transport because Alex has seizures and can be difficult to control.

"You may not see it, but he can be a danger to himself and to other passengers," Ms Stein said.

"Trains get so busy. There are a lot of people on them now, and you need that space to be able to sit with him," she said.

Scope chief executive officer Jennifer Fitzgerald, who has seen commuters with special needs given hostile looks, said disability wasn't always physical.

"It can be sensory. It can be intellectual," she said.

Australia was a signatory to a United Nations convention on rights for people with a disability, and special-access areas were part of a state government commitment to provide accessible public transport, she said.

V/Line said it was disappointed in how Ms Stein and Alex had been treated. "All our passengers, without exception, have the right to be treated fairly and equally on our trains and at our stations," a spokesman said.

Designated access areas were on all trains, and passengers were encouraged to call a conductor if they needed help.

LISA Comment: To be fair to the public, they find it difficult when the person, especially a child, is very normal looking.

Parents with children or young adults with autism, often suffer as the public see this very normal, indeed, good looking child with bad behaviours.

The public see the mother as not properly controlling the child .... This can be a nightmare for mothers!

Posted by: Hatton AT 04:39 pm   |  Permalink   |  0 Comments  |  Email
Tuesday, March 27 2012

The New South Wales (NSW) Government is committed to improving the lives of people with a disability, their families and carers. People with a disability, their families and carers have expressed the need for greater choice and control over state based disability funding and resources, and the supports and services they access in their daily lives. To ensure that these people are at the centre of decision making about the services they need, the NSW Government will implement person centred approaches by the end of 2014.

The NSW Government is conducting state wide consultations to seek the views of people with a disability, their families and carers, and service providers on person centred approaches and the outcomes people would like to see within the NSW disability service system.

The consultations commenced with the Living Life My Way summit on 7 and 8 July 2011, which was hosted by the NSW Minister for Disability Services, the Hon. Andrew Constance MR

A total of 153 consultation sessions have been held with people with a disability, families and carers and service providers across metropolitan and regional areas of NSW. In addition, the NSW Government commissioned targeted consultations to engage with people from Aboriginal communities, people from culturally and linguistically diverse backgrounds and people with intellectual disability. This report includes the findings of the consultations conducted in languages other than English. The consultations with Aboriginal communities and people with intellectual disability are continuing and will be reported separately.

The consultation sessions explored people's views, in detail, on a person centred approach and its key elements:

1 person centred planning;

2 personalised funding arrangements; and

3 person centred service delivery.

This report provides a summary of the key themes, views and suggested directions arising as a result of the consultations and the written submissions received to date.

During the consultations there was overwhelming support for person centred practice. Person centred practice is seen as an attitude or culture that translates into a way of operating that supports people with a disability to live the life they wish. In a person centred service, a person with a disability is listened to, heard, respected and encouraged to exercise choice and control to the greatest extent possible.

A number of people with a disability, families and carers and service providers shared accounts of how services have become more person centred in recent times. There were a number of positive stories of person centred practice, including direct accounts from people with a disability who had changed their lives significantly as a result.

Carers and family members strongly supported the capacity of person centred approaches to determine the 'right' mix of supports and services at key life stages. Person centred approaches could also contribute to the well being and sustainability of the family unit and continuity of care and support arrangements when family members are no longer around to take part in decision making.

Personalised planning is seen as the way to truly understand and respond to a person's service and support needs. Planning would usefully occur around a person's life stage, needs, circumstances, goals, preferences and aspirations. Families, unpaid carers and friends would frequently play an important part in the planning process, as might paid carers and other support people. All participants agreed on the need for a mechanism to change or adjust a plan as circumstances change and the need for an in built review mechanism.

A number of service providers already undertake one on one planning with the people who access their services but recognise the potential for personalised planning to go much further in responding to their clients' needs.

Personalised funding is seen as critical in terms of providing people with a disability direct control over the supports and services they access. The mechanics of how it might work in practice is the subject of rigorous debate and will require a great deal of thought given the range and complexity of needs and expectations that exist within the community.

A transition to personalised funding has significant implications for the service sector and there is a need to plan for the transition and to develop tools and supports to assist providers to make the change.

Personalised service delivery is seen as a way of thinking and behaving more than anything but there are also significant practical implications in terms of the day to day operation of a disability service.

The issues, questions, ideas and views raised during the consultations are summarised below, and will be used to develop a potential model for implementing person centred approaches for disability supports and services within NSW. The model will be developed over the next few months and presented to the community in a second round of consultations in the first half of 2012.

We would like to thank all the participants in the consultation sessions who gave so generously of their time, experience and energy.

Full Report


ADHC - NSW

Posted by: Hatton AT 05:26 pm   |  Permalink   |  0 Comments  |  Email
Tuesday, March 20 2012

by Peter Gordon, of Slater & Gordon, at the cocktail party of the Strength to Strength Conference in Melbourne on March 1, 2012

I retired from active practise as a lawyer after 30 years at Slater & Gordon in September 2009.

After all that time, I thought I’d seen most there was to see in terms of people injured one way or another.

I’ve acted for over 3,000 asbestos cancer victims including those who had to take on the might of CSR over Wittenoom and James Hardie. I’ve sat in the bedrooms of couples who had lived together for 60 years and watched as a wife lovingly sponged her husband’s brow as mesothelioma took him from her, breath by breath.

I’ve acted for the dying victims of big tobacco, and seen them fade away; struck by the fact that the merchants of that deadly product were never there for the final act…they were somewhere else in the middle of town, making plans to market cigarettes to a new generation.

I’ve seen the haunted lives of hundreds of men those whose childhood innocence and whose bodies were taken and raped by Catholic clergy.

In the 1990s, I acted for a whole generation of haemophiliacs whose arthritic and tortured bodies were blighted by the AIDS virus, after Australia’s blood supply became contaminated in the early 1980s.


And I retired from that career in September 2009, proud of who and what I’d fought for and interested to know if I could find something else to be good at.

Barely a week had passed when I was asked to contribute my time to efforts to get compensation for Australia’s thalidomide survivors.

Some thalidomiders had received a pittance back in the 1970s…but most had received nothing at all. And so with all the bravado and all the complete lack of judgment of a litigation Don Quixote, I saddled up for one more fight. Two and a half years on, I am fighting for thalidomiders in countries all over the world. Thalidomide will be the last big fight in my career as a lawyer. Nothing in my thirty years as a lawyer could have prepared me for what I have learned from thalidomiders in the last three years…about people, about the human spirit, about how Australia has treated its disabled people…about the unending capacity of large companies to put profit before safety.

I learned to laugh at myself and my inane and misplaced sense of political correctness. I want to tell you a story about that.

I had breakfast in late 2009 with Brett Nielsen, a man born with no arms. As he asked me to pass the sugar for his coffee and I picked up a sachet of ‘equal’ and started to rip it open, he snatched it off me with his toes and then commenced to tear it open with the two biggest toes on each foot before pouring the contents into his coffee and then picking up the teaspoon with two toes and stirring it, and saying, ‘Don’t you think I can do anything!!’

Minutes later, we went up to the buffet and I stood back respectfully, waiting for him to perform a similar feat (pardon the pun,) when he eventually turned around and said …”well, what about a bit of a hand, ya bastard!”

That year, I also got to meet Mary Henley-Collopy, a woman born only with a foot attached to a hip, and some fingers coming directly out of her shoulder … no limbs. Given up by her biological mother shortly after birth, she was raised by adoptive parents and grew to be one of Australia’s foremost public servants in the Department of Social Security. The most recent email I got from her, late last year, she was in Africa, helping out as a volunteer in one of the townships. I never cease to look at what Mary has made of her lot, with awe and with pride.

Around the world, I now act for or help out with over half a dozen women effectively missing all of their limbs. Their circumstances range from the unbelievable lifetime commitment and care Ian and Wendy Rowe have provided to their daughter Lynette Rowe (the lead plaintiff in the thalidomide class action.) and people like Mary who were abandoned by their mothers and whose lives were transformed by people who volunteered to totally commit the balance of their lives by making the commitment to raise a seriously disabled child…and sadly, to others whose parents abandoned them as babies at a municipal tip; parents who found it in themselves to habitually sexually abuse a daughter with no arms, no legs, no means of escape or complaint. It is humbling to know of and represent these women. There can in my view be no more important role for a lawyer. It is as inspiring as it is traumatic, to try to comprehend their fifty years on this planet…about the same time I’ve been here.


In my first few months of knowing the Rowe family, I visited them several times but never want pas the front lounge room of their modest weatherboard home in Nunawading. The room was always clean but the carpet worn and frayed and the furniture old. The Rowes and their daughter, always presented bright and welcoming faces, always made me and my associates welcome, and always offered us tea and biscuits.

The circumstances which led me to go out the back of their house only transpired after six months of getting to know them and several visits. Most of the back section of the house was built over a few weekends in 1978 as a Lion’s Club project.

You see, the breadwinners in the Rowe family had to give up their day jobs fifty years ago and spend almost all their time looking after Lynette, and each other. Because Lynette is completely limbless, she has required the fulltime care of both of them day and night for fifty years. And because of that, the back door hadn’t been able to open or close since about 1984. Movement in the foundations had fixed it solid, two inches open at the top, so that for the last 28 winters, the cold wind has blown in, with nothing to stop it. The room where Lynette has spent most of that time drops a full eight inches from one corner to the one diagonally opposite. The floor of the bathroom where Lynette’s parents have washed her every day, all these years, was never wet-sealed and it creaks loudly when you walk on it…as if to tell you its days are numbers and if you’re standing on it at the wrong time, so might yours be.

From the lounge room back, this whole house has been falling down.

I have wrestled with an odd sense of shame since I first went out the back of the Rowe family home. And now I think I can begin to explain why. It’s because I had thought I was helping these people by running their case. I thought I had some decent understanding of their lives.

But I had no idea really…because I had never gone out the back.

Just as most Australians…just as Australia… has itself never before “gone out the back”… and caught a glimpse… any kind of insight… of the real lives our seriously disabled people… and their carers… have lived.

It’s time to go out the back.

There’s a lot I don’t pretend to understand about the current debate.

First and foremost, I don’t understand how it’s come to this. How can we think of ourselves as a decent society when we have allowed these conditions to persist…for such utterly decent and heroic Australians to be left so bereft of care and support for so long…especially in a country whose politicians have contended for credit over the past twenty years for giving us the strongest economy in the world.

Second, I don’t understand why the proposal to address these problems is called a disability insurance scheme. This is not a matter of insurance. What we are talking about here..proper and paid care…proper support and pay for families of disabled people…decent and appropriate accommodation…are matters of basic human rights in a decent society. If there is any meaning whatsoever to be accorded to charters of human rights, to equality under our Constitution and the under the law, it is that Wendy Rowe, at the tender age of 76, should no longer have to go to the gym three times a week to maintain the upper body strength to get up and turn her fifty year old daughter, three times a night…every night. It’s not, or at least it should not be, a matter of paying a premium and getting some coverage.

Third, I don’t understand why some people connect the need for this scheme to a desire to take away the rights to justice of those people who became disabled because of someone else’s negligence.

From where I sit, there are two issues here…the first is the fundamental right to support and care provided by a decent and prosperous economy.

Second, the right to justice for those who, like Lynette Rowe, can point to the fact that her disabilities might never existed at all, and her life be completely different…if a giant pharmaceutical company had chosen to act on hundreds of warning signs over the drug from which it was making millions, instead of ignoring them.

These rights…the right to appropriate and decent care and the right to justice…might be different rights…but they are both fundamental…and they do not conflict. Those who contend otherwise are really telling you that while the likes of James Hardie, Union Carbide and Grunenthal can capitalise their profits…their losses should be socialised and paid for everybody else except them.

Maybe it ought not be a surprise that such a suggestion comes from something called “the Productivity Commission”. It is hard to measure the productivity of justice…of happiness. But the failure of Governments in the past to go beyond matters of productivity …and to address decency and fairness…has been the bane of this issue. The Productivity Commission should share its Canberra accommodation with a Happiness Commission and a Fairness Commission.

I support the aims of the National Disability Insurance Scheme (NDIS) and believe that it can deliver one of the most important social reforms of this decade, providing that the services and entitlements “level up” to the best available in the country.


I support the fundamental principle that people with a disability, in the case of the National Injury Insurance Scheme with catastrophic injuries, should be given a decent level of care and support on a no-fault basis, regardless of where they live or the cause of disability.

There is clearly a disparity in the resources available and the level of care provided for Australians who are injured in different circumstances, in different places, even though they have suffered a similar injury or have a dissimilar disability. The Productivity Commission calls present arrangements “dysfunctional, unfair…and postcode based”. It is quite right to do so.

We should all be committed to seeing this change.


We should all be committed to this as a national endeavour and insist no one will be disadvantaged in a national levelling exercise and that rights, services and support are improved.

We want to see an end to the approach that sees services rationed because of inadequate resourcing or availability of specialised services, and lacks dignity for people because there is no choice, or self-determination.

On Saturday night, my wife Kerri and I and the five other lawyers working on Lynette’s case are proud and delighted to be invited to her fiftieth birthday party. In four months time, she and her parents will move into a new home in which the back will be just as flash as the front lounge room, with state of the art voice and vision activated technology.

I have said once or twice this year that there can be no more potent a symbol of our justice system than that a women with no arms or legs can call to account two of the biggest multi-national companies in the world in the court of her home town and on behalf of thalidomiders everywhere.

My wish for Lynette is that by year’s end, she lives in a new house that she loves, with parents re-invigorated and secure about her future and theirs, that she has won justice denied to thalidomiders for fifty years and that she lives in an Australia which has delivered real change and real rights for the care of seriously disabled people.

My wish for all of you is that this campaign, so long in the planning and the fighting, delivers for Australia’s disabled and their families the transformation in their lives, that the Rowe family can now hope for. In my view, there is no cause more meritorious and I wish each and every one of you the very best and I thank on behalf of each and every one of my thalidomider clients, everyone who has played a role in the campaign so far.

These are fundamental rights…long overdue!

 

Posted by: Hatton AT 05:30 pm   |  Permalink   |  0 Comments  |  Email
Tuesday, February 28 2012

The Challenging Behaviour Foundation exists to demonstrate that individuals with severe learning disabilities who are described as having challenging behaviour can enjoy normal life opportunities when their behaviour is properly understood and they receive appropriate individualised support.

The CBF will support families, professionals and other stakeholders through education, information, research and partnership working to enable this to happen and will work strategically to influence national policy and practice.

Our aims are:

To provide information and support to parents and professionals caring for individuals with severe learning disabilities and challenging behaviour

To demonstrate how local service provision for individuals with severe learning disabilities and challenging behaviour can be improved, and to actively facilitate such provision on a national basis

To highlight the needs of those with challenging behaviour and to influence policy on their behalf

To promote research into challenging behaviour associated with severe learning disabilities and to disseminate the results of such research so that practical benefits are gained

We believe that we can achieve most by working together. We look forward to working with you.

The Challenging Behaviour Foundation
c/o The Old Courthouse
New Road Avenue
Chatham
Kent
ME4 6BE

And, more:

Oppositional Defiant Disorder (ODD) http://www.familyandhome.org/difficult_child.html

http://www.aacap.org/cs/ODD.ResourceCenter

Pathological Demand Avoidance http://www.donnawilliams.net/pathologicaldemand.0.html

Posted by: Hatton AT 12:55 am   |  Permalink   |  0 Comments  |  Email
Wednesday, February 22 2012

It’s a government lottery, with no guesses as to which will be last or never occur in a meaningful way.

Bill Shorten says the NDIS pit is so deep, we will never hear the coin touch the bottom. Yet with that philosophy, Mr Shorten, on Q&A, claims it will occur. What he does not say is, how much it will be watered-down, if it does occur.

Certainly, there is an urgent need for NDIS funding to provide for the huge level of unmet needs – those families doing it tough with little or no hope for the future but to keep on keeping-on caring for their adult family member ‘till they drop. However, there is a lot of cleaning-up of existing services pending any level of NDIS, or similar.

The Victorian Government has produced an action plan entitled “Human Services – The Case for Change”.

This document explains how we can, and should be, building on the strengths of the existing system to make a real difference to the lives of vulnerable Victorians and their families. But despite our common purpose of supporting people out of disadvantage, major improvements can still be made to connect individual efforts and achieve better life outcomes for vulnerable people.

If existing services can be made more accountable for their service provision, including better customer service, then when some NDIS funding finally arrives, consumers and their families will have less battle to achieve reasonable quality of care for their family member.

Bill Shorten speech to ALP National Conference, NDIS

Human Services - The Case for Change

 

 

Posted by: Hatton AT 01:01 am   |  Permalink   |  0 Comments  |  Email
Thursday, January 12 2012

By Maris Beck of The Age, Melbourne, Thursday, 12 January 2012

The Department of Human Services showed an "adversarial, ‘win-at-all-costs’ attitude, the likes of which I have rarely seen", said a magistrate in Melbourne.

A foster mother wept in court yesterday as a magistrate ordered she be reunited with her long-term foster children and berated the Department of Human Services, which he said psychologically harmed the children by removing them against their will almost 11 months ago.

The Children's Court magistrate said the department had shown an "adversarial, win-at-all-costs attitude, the likes of which I have rarely seen" and had done "whatever it could" to prevent the return of the children to their foster mother.

The children, who had been in their foster mother's care since 2007 and called her "Mum", were removed last March after the department disagreed with her on issues such as her attempt to enrol the children (some of whom are intellectually disabled) in a special school, and the carer disagreed with the department's view that the children should be prescribed Ritalin, a drug for attention deficit disorder.

The magistrate said the children were "suffering ongoing emotional harm" since the removal, in which the court previously heard the department had arrived unannounced at their school and taken them under a police guard to live almost 200 kilometres away, with their carer permitted infrequent and supervised contact.

He recommended the children, aged seven to 11, go back to their carer immediately, ordered the guardianship of the department's secretary be extended only until February 13, and ordered the department to apply to place the children in the foster mother's permanent care.

The magistrate said the department's attitude was "now so hostile that ongoing involvement of the department in their lives is contra-indicated".

In defiance of the non-binding recommendation the children's return be immediate, counsel for the department said they would not be returned yesterday. The department was considering its rights of appeal.

The magistrate, who had earlier in the hearing noted a recalcitrant attitude by the department, told it that if it did not return the children, it could be considered to be causing ongoing harm and be open to Supreme Court action.

He ordered it to pay some of the carer's court costs, a total of $1760, to cover three "fairly small" instances in which he deemed the department had acted irresponsibly or mischievously to prolong proceedings.

Speaking outside the court, the carer said the children were "my angels" and the magistrate's order "meant everything" to her.

The children's lawyer said it was disappointing the department had not agreed to hand them back immediately and they would suffer as long as they were away from their foster mother.

A department spokesman said it was "reading the judgment very carefully and we will act in the best interests of vulnerable children". Identities of those in the case cannot be published for legal reasons.

LISA Inc Comment: This is a very traditional attitude of this totally out of control government department. The ‘power over people’ attitude, is very similar for people with disabilities and their families. Vulnerable people suffer in the hand of the power hungry, captive market, secure employment, no need for customers or customer service, public servants. Successive ministers have totally failed to reign-in the overwhelming and ever growing power of this out-of-control juganaught!

Posted by: Hatton AT 01:14 am   |  Permalink   |  0 Comments  |  Email
Saturday, December 10 2011

"A peek at an excellent, must have, publication!"

Introduction:
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.....

Posted by: Hatton AT 01:38 am   |  Permalink   |  0 Comments  |  Email
Thursday, December 01 2011

Little wonder a report by Pricewaterhouse Coopers shows Australians with a disability are at greater risk of living at or below the poverty line than people with disabilities in other OECD countries.

“The Federal government’s Mid-Year Economic and Fiscal Outlook mini-budget has not budgeted a single red cent for establishing a National Disability Insurance Scheme, not a cracker.

And in the week leading up to the celebrations of International Day of People with Disabilities, not much to celebrate ” says MaryLou Carter, secretary of the Carers Alliance.

“Since 2008 people with disabilities, carer-families and people who care for and care about people disabilities have had their expectations raised with a National Disability Insurance Scheme (NDIS) in prospect, what now?”

“As recently as a week ago, at the National Disability Awards Night, Ms Gillard was assuring people with disabilities that her government was committed to the introduction of the NDIS.”

Yet when it comes to backing that commitment with the dollars necessary for establishing such a Scheme by 2013, the Federal government has squibbed.

Over 24,000 new Commonwealth Public Servants have been employed by the Federal government since 2007 – how many of those were people with disabilities?

While the Federal government has spoken many worthy words in earnest about a National Disability Insurance Scheme, the cruel reality was clearly shown in this week’s mini-budget: The Federal government’s intention is to do nothing to implement the very initiative that will give people with disabilities and their families .

Carers Alliance calls on the Federal government to make good its promises. Introduce the legislation to implement a National Disability Insurance Scheme. There is this guarantee Tony Abbott will not say No.

“It’s not what is said but what is done that matters. The recent Census made sure every Australian was counted it’s up to the Federal government to make sure Every Australian Counts.”

Media Contact: MaryLou Carter , Secretary, Carers Alliance 0425 363 422

Carers Alliance is a federal political party formed to promote a better life for and advance interests of people with disabilities and carer-families who support them

Posted by: Hatton AT 01:46 am   |  Permalink   |  0 Comments  |  Email
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

Posted by: Hatton AT 01:30 am   |  Permalink   |  0 Comments  |  Email
Wednesday, November 16 2011

Those parents who have pulled their adult family member out of a group-home and day-centre, into a self-directed lifestyle, say it’s the very best thing they did for their loved one.

Many of these families did not move to self-directed-approaches ( SDA), solely because of the more subtle aspects of the SDA lifestyle quality, such as not being horded around like sheep. But because of the lack of quality-of-life-care, overall.

It is sad when, after all the years of CRUs and ATSSs, families finally become so sick of their loved one languishing in minder-care group homes and day centres - losing skills and self-esteem. When it is not rocket science to a least ensure residents/clients receive very meaningful and consistent quality of life care within recognised community standards. Rather than basic minder-care.

When young adults move from the family home, to a group home, their quality of life drops significantly. When they move from a Special, or Special Developmental School, to a Day Centre (ATSS), the level and quality of service frequently drops sinificantly. It is, therefore, easy to see why SDA is being promoted so strongly.

It is equally easy to see the need for Day Centres (ATSSs) to be staffed and funded by Education Departments, not Human Services. And that all group homes be operated by NFP/NGO/CSOs, under quality control contracts, and within NDS service quality guidelines.

Although the advocates of SDA, very actively encourage everyone to move to SDA, the very large number of people currently in group homes and day centres, means it is not an overnight transition - even if everyone was willing and able.

Certainly, people with a disability and their families can be encouraged towards SDAs, they should not be seen as languishing away if they choose not to move to a SDA.

The standards of day centres and group homes, especially government direct care group homes, need to be significantly raised, as do their customer relations, to ensure the person with the disability and their family are at the very centre of every aspect of service provision.

Although we accept there are many CRU and ATSS facilities who do their best to provide care and support as good as possible, those who support and promote self-directed-approaches (SDA), do not consider the concepts can ever be good enough.


See "Field" Web Site: http://www.field.org.au/
http://www.field.org.au/infocast11/field/sda/forum.html
http://www.resourcingfamilies.org.au/index.php/choice-a-control/60-what-is-a-self-directed-approach.html

Posted by: Hatton AT 02:16 am   |  Permalink   |  0 Comments  |  Email
Saturday, September 17 2011

“Will the NDIS (National Disability Insurance Scheme) move parents/families from the ‘Boot to the Driver’s Seat’?” Only if the NDIA (National Disability Insurance Agency) ensures state governments and service providers reduce their dominance on disability service provision. And, parents/families assert their ISP (Individualised Service Package) rights!

There are four basic stages of supported accommodation service (care) provision:-

  1. The present bulk funded group homes/hostels, where the residents and their families generally have to ride in the boot.
  2. ISP funded group homes, where the residents and their families just hand-over their ISP to the same service provider, to continue to have a similar service to the present bulk funded group homes.
  3. ISP funded group homes, where the residents and their families assert themselves to be in the driver’s seat (“Those who pay, call the tune”).
  4. ISP funded SDA (Self-Directed Approach), where the person with the disability and their family own and drive the car.

Many people with a disability, parents/families, may not wish to, or be able to use their NDIS ISP to SDA. They have, therefore, basically two choices – 2 or 3.

Canada was one of the first countries to move to ISPs. Many of the families, who suddenly found themselves with money in their pocket to directly purchase services, or now demand better of their existing service, did little more than give the money to their existing service provider to carry-on as usual.

NDS (National Disability Services) the peak body for most CSOs (Community Service Organisations) is helping its members to coherently transition the service system into the new service delivery environment. The key of their focus areas will be:-

  • The people with a disability, their families and carers are at the centre of service delivery.
  • Achieving a sustainable, integrated and equally regulated disability service system, in readiness for the NDIS.
  • High-performing organisations achieving real outcomes for people with a disability.

Equally, people with a disability, their families, carers, guardians, advocates and friends need to understand the potential of NDIS ISPs giving them rights based services, in contrast to the present charity based hand-out services - That they be in the driver’s seat, not just handover the ISP to the service provider to do whatever they wish.

Much will depend on the real value of the person’s NDIS ISP, as its value will be directly proportional to the dollar value of each assessment level, times the number of levels.

A person living in a group home now, would rightly expect to receive an ISP equal to, or more than the present percentage of bulk funding the current service provider is receiving for that person.

In a government direct service provision group home, the support dollars for a person with high support needs and challenging behaviour is around $140,000.00pa.

Posted by: Hatton AT 04:28 pm   |  Permalink   |  0 Comments  |  Email
Tuesday, August 23 2011
Posted by: Hatton AT 06:48 pm   |  Permalink   |  0 Comments  |  Email
Wednesday, August 17 2011

No matter the capacity of your son or daughter with an intellectual or multiple disability, your official parental powers are taken from you by common law! At 18, your family member is an adult by common law!

You no longer have any rights!

Problems can manifest in many ways. Banks may not accept you represent your family member, Health funds may not accept you, service providers can be difficult.

If you wish to continue to protect your vulnerable family member, as you did before they were 18, in the State of Victoria, you need “Plenary Guardianship and Administration” under the Guardianship and Administration Act - through VCAT.

If your family member has sufficient capacity, you can get Enduring Power of Guardianship and Enduring Power of Attorney (Finance and Medical). Check it out with your lawyer!

Posted by: Hatton AT 03:47 pm   |  Permalink   |  0 Comments  |  Email
Sunday, August 07 2011

An elderly long time widowed mother, with a son in a Department of Human Services (DHS), Victoria, group home, visits her son each week to take him into the community and lunch with him.

Most time she takes him out, he is poorly dressed. Yet she says he has good clothes, and she can’t understand why he is not dressed better per se, but especially when department staff know he is going out with his mother into the community

This mother feels so intimidated, she does little more than pass the time of day with the house direct care staff.

The mother feels so embarrassed when meeting people she knows, that she pro actively apologies for the way her son is dressed.

Yet, the Office of the Disability Service Commissioner (ODSC), Victoria, an independent statutory body, set up specifically to deal with complaints, actively encourages parents/families to complain, but does little to shield them from the wrath of the all-powerful DHS.

The ODSC, a pseudo government department, certainly does not actively and assertively encourage the DHS, a government department, to provide real customer service within the principles of its ‘Quality Framework’, Section 5.2, ‘Consumer Assessment’, and within the principles of AS ISO10002 - 2006.

Rather, the ODSC has a philosophy of “Equal Opportunity” for both the DHS and the parent/family.

The ODSC feels it is providing a level playing field, with the all-powerful DHS (with no reason for customers or customer service) at one end of the table, and a very weak parent/family at the opposite end. And, the ODSC conciliator in the middle, with a mandate not to help either side.

So why would any parent/family feel other than intimidated in the presence of a service provider who considers the parents/family are lucky to get any service, and should be extremely grateful for whatever they get, as there are many on the ‘Disability Support Register (DSR)’ who are only too willing to take anything on offer for their family member.

Posted by: Hatton AT 03:49 pm   |  Permalink   |  0 Comments  |  Email
Wednesday, June 15 2011
Daily Mail Newspaper, UK June, 2011

Seeing the news footage of Winterbourne View in Bristol, a home for adults with learning difficulties, was like having my worst nightmare confirmed.

As a parent of a child with special needs and poor communication skills, I've lived with a dark fear of my son's future ever since he was diagnosed.

Contemplating his fate when my husband and I are not around any more is the bleakest thought I could wish on any parent.

He has no brothers or sisters to keep an eye on him; even if he did I'm sure they would have their own families. So it's down to care homes to do the right thing by him.

These special needs adults have the mind of a child, they do not understand the world they inhabit. It can be terrifying to do the simplest of tasks an average person would not give a second thought to, so you can imagine what that systematic abuse must have been like for them.

I'm sure the majority of care homes are run with care in mind but I live with my nightmare until the Government introduces 24-hour Skype access for relatives.
Posted by: Hatton AT 05:52 pm   |  Permalink   |  0 Comments  |  Email
Wednesday, June 15 2011

Herald Sun Newspaper, Australia
Monday, June 12, 2011


I have an adult child who is severely disabled and who lives at home with me.

All his life, and it feels like all of mine, we have struggled to get him the right equipment, the right therapy, into the right schools and day services while still trying to live a reasonable, fulfilling life.

Even with the best disability workers in the world, realistically I believe only a family member can "go the distance" and achieve the best outcomes possible for these, our disabled children.

Australia desperately needs a National Disability Insurance Scheme, as recommended by the Productivity Commission, to help millions of families like ours.

I have no more superannuation left after buying a purpose-built van, together with a ramp for the wheelchair, and the wheelchair itself now needs replacing.

What will happen to my son when I am no longer here to speak for him?

He will become just another name on the list of Australia's most vulnerable and disadvantaged people who wait in vain to be considered important enough to also be allowed to have "quality of life".
Posted by: Hatton AT 04:00 pm   |  Permalink   |  0 Comments  |  Email
Friday, May 20 2011
Whilst discontent with services for people with a disability and their families remains fragmented, governments need do little.

Government bureaucrats say, “You all need to be on the same page to get our attention. We see the majority saying little or nothing, so we see them as content. We see just the fragmented few with concerns - So we must be doing fine!”
Posted by: Hatton AT 05:04 pm   |  Permalink   |  0 Comments  |  Email
Wednesday, May 11 2011
(We are seeking views and comment on this - via our Email or Mail)

Caring parents having a son or daughter with an intellectual or multiple disability need to live for ever because almost all services, supported accommodation, in-home support, respite day services, sheltered workshops, education, etc, etc cannot, at present, be relied upon to get it right for those with little or no ability to adequately advocate for themselves.

These are just some of the reasons why! (If you know more, let us know):
  1. Clothes being mislaid or lost, even when clearly marked.
  2. Wearing the same shoes all the time, especially runners ( when has a range of shoes)
  3. Washing quality poor - stains frequently not removed with Preen – woolens ruined in hot water, etc, etc.
  4. Clothes not ironed, or consistently ironed.
  5. Inappropriately dressed for the weather and environment.
  6. Generally, poorly dressed.
  7. Bed made up when wet.
  8. Top sheet not consistently put on bed.
  9. Manchester and towels in poor condition.
  10. Meals poor – lots of takeaway
  11. Cut lunches, for day activities, poor.
  12. Poor grooming, including teeth cleaning and nail cutting.
  13. Shoes not cleaned.
  14. Reluctance to use generic services for medical, hair care, etc, etc.
  15. Very little meaningful interaction, developmental and social activities – loss of skills.
  16. Failure to make or attend medical and dental appointments – Not in the staff diary, no one read the diary, or no staff wanted to go.
  17. Casual staff sent with resident to medical appoints, because regular staff don’t want the bother
  18. Staff infrequently attending a resident admitted to hospital.
  19. Resident's injuries frequently not noticed, treated or reported.
  20. Reluctance to treat minor abrasions and rashes.
  21. Residents needs have to fit in with staff needs, mood and availability.
  22. Delays in taking residents to a doctor (Example: Sector manager visiting a CRU on a Friday, observed a resident with a streaming cold. On asking when the resident will be taken to a doctor, the staff said, “On Tuesday when his key worker is back!”
  23. The “Key Worker” is intended to represent the resident’s interests with the service provider, especially where the resident has no family or effective family. Yet key workers frequently do little more than the average workers (staff). And the key worker’s loyalty is naturally with their employer – the service provider.
  24. A “Case Manager” is also intended to represent the resident’s interests with the service provider. Again, the case manager is employed by the service provider!
  25. Apart from parents, family and friends, there is little provision for purchasing or replacing items and equipment which would help to enhance the resident’s lifestyle. The resident’s finances build year after year, with the resident having few possessions. Whereas, most residents can benefit from such items as, a trampoline, an exercise bike, balls, talking toys, communication aids, TV, video recorder, drawing boards, etc, etc.
  26. Staff loaned a resident’s radio to another resident for an extended period, without consulting the parent of the resident to who the radio belonged. The resident to whom the radio belonged had no meaningful communications.
  27. Staff threw all washing in together, into the industrial washing machine – colours, whites and soiled clothing!
  28. Staff refused to soak stained clothes in Napisan, just sent it to the mother of the resident to deal with.
  29. Resident’s rooms and windows frequently dirty.
Posted by: AT 04:51 pm   |  Permalink   |  0 Comments  |  Email
Tuesday, May 10 2011

(We are interested in feedback on the following, via our regular Email addresses or mail if you wish anonymously. Our mail address is on this website)

What makes a “Supported Accommodation Group Home” – Good?

In general terms:
  • A supported accommodation group home means: “A regular house in the community, with up to six residents having an intellectual or multiple disability, and a number of support staff depending on resident needs”.
  • Service providers try to ensure the residents are reasonably compatible, to help ensure care level and quality is balanced between all residents, and that residents complement each other.
  • The type and level of care must be related to the residents’ ability, and directly proportional to their needs.
Direct Care Staff:
  • Need to be qualified, trained, motivated and remunerated to self monitor outcome expectations of care being provided in accordance with community expectations of the care of vulnerable people, and in accordance with recognised service provider and government care policies, standards and values.
  • Need to have an attitude that the group home is the residents’ long term home, and not primarily their workplace.
  • Need to consider the residents as their second family.
  • Need to work as a team.
  • Need to adopt a balanced role between domestic duties and the need to interact with residents
Factors of Care:
  • Care is fundamentally within two factors: “Basic Care” and “Quality of Life Care”
  • Basic care: Is that of providing basic human needs – Food and Drink, Sleep, Hygiene, clothing etc.
  • Quality of life care: Is that of ensuring the person has as meaningful a lifestyle as their ability will allow, through interaction, developmental and social activities by direct care staff providing person centered active support and positive behaviour support.
Overall:
  • Care must be “Quality of Life” not “Basic Minder Care
Posted by: Hatton AT 04:47 pm   |  Permalink   |  0 Comments  |  Email
Sunday, May 08 2011
Government Direct Care Services are Fire Proof
Mother blocked by VCAT (Victoria)

The best place for family members with a disability, is to living with their family.

Despite advances in medical science, parents do not live forever, or are able to provide care for ever.

At some point, parents have to make that dreadful decision of relinquishing care of their vulnerable family member to “paid strangers” - as Michael Kendrick says.

Having reluctantly made the decision, caring parents naturally look for every avenue to monitor their family member’s quality of life.

In most supported accommodation group homes, these are a number of avenues which can assist parents to ascertain the level and quality of care being provided behind those closed doors. Unfortunately, many are not made available to parents for bureaucratic and so called privacy reasons. Progress notes are the most obvious avenue, if you can get access to these.

As these were blocked from this mother by the government direct service provider, she took the matter to the “Victorian Civil & Administrative Tribunal (VCAT)”, where she was, again, blocked from access to her family member’s “Progress Notes” on the grounds she would use them to scrutinise the government’s service provision.
Posted by: Hatton AT 04:42 pm   |  Permalink   |  0 Comments  |  Email
Wednesday, May 04 2011
"INDEPENDENT MONITORING OF SERVICE LEVEL & QUALITY"

Information on the audit of DHS supported accommodation group homes (Disability) by one of the contractors listed below.[/b]

Disability service providers (DHS) are required to be certified as compliant by 31 December 2012.

The Independent Monitoring process, which verifies if a disability service provider meets the relevant performance measures in respect of the Standards for Disability Services in Victoria, involves two stages. It started, 25 October 2010, and is due for completion 31 December 2011.

Stage one: Consisted of a review of policy and procedure, and did not involve the visiting of group homes.

Stage two: The monitoring process is due to occur in June/July 2011, and will involve visiting a group of homes selected as a representative sample.

As the sampling exercise has not yet been undertaken by the auditor it is not possible to advise you whether 25 Peugeot Pursuit, Mill Park will be one of the group homes audited.

Contractors:
  • BSI Group (Australia & New Zealand) Pty Ltd
  • Global-Mark Pty Ltd
  • Health and Disability Auditing Australia Pty Ltd
  • International Standards Certifications Pty Ltd
  • NCS International Pty Limited
  • SAI Global Certification Services Pty Ltd
Certification audit against the Quality Standards for Disability Services in Victoria as per JAS ANZ Procedure 34.

LISA Inc  suggests that as there is no formal indication of parents/families being consulted, parents/families with a family member living in a DHS group home should ascertain which of the above contractors has be allocated to accredit the group home in which their family member is living.

If not provided with this information on making a request of the Regional Director, make an FOI request to: Manager, FOI Department, Department of Human Services, 50 Lonsdale Street, MELBOURNE 3000.

Having ascertained your contractor, any concerns you may have about the care of your family member can be presented to the contractor.
Posted by: Hatton AT 04:38 pm   |  Permalink   |  0 Comments  |  Email
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