A networking and information-sharing site for people who access cerebral palsy services and supports in NSW

Tuesday, 28 February 2012

Sydney-based Conductive Education practitioner Lisa Gombinsky has just announced her  affiliation with an organisation called Future Footprints (established in Adelaide by conductor Eszter Agocs), to offer CE services to people in the greater Sydney area.
Future Footprints is an authorised service provider under the federal government’s “Better Start for Children with Disability” funding initiative.
This means that if you have a child with cerebral palsy under the age of seven who qualifies for this funding, you are able to use it to purchase services from Future Footprints, and therefore from Lisa.
Applications for group and individual CE sessions are now being accepted. Please contact Lisa Gombinsky directly for further details, at lisa.gombinsky@gmail.com
Lisa also has her own blog site, thephysedstudio.blogspot.com.au, and Future Footprints’ website is at www.futurefootprints.com.au
Although the “Better Start” initiative is limited to children under the age of 7, it is a very welcome harbinger of the transformational changes coming to Australia’s disability service sector, whereby people with disabilities and their families will in future have far more say, control and choice over how, and on what, funding for therapy and intervention services can be spent.

Thursday, 23 February 2012

Neurologic improvement detected in rats receiving stem cell transplant

DALLAS (February 10, 2012) — In a study to be presented today at the Society for Maternal-Fetal Medicine’s annual meeting in Dallas, Texas, researchers will report that early transplantation of human placenta-derived mesenchymal stem cells into the lateral ventricles of neonatal rats with birth-related brain damage is possible, and that the donor cells can survive and migrate in the recipient’s brain. The study was designed to have the rat’s brain damage mimic brain injury in infants with very low birth weight.
One of the major causes of neonatal brain damage is preterm delivery. Despite enormous efforts to prevent it, brain injury accounts for a major part of the clinical problems experienced by survivors of premature birth. The enormity of this problem is indicated by the occurrence of: cognitive, behavioral, attention related and/or socialization deficits in twenty-five to fifty percent of cases in this group; and major motor deficits in five to ten percent of cases in this group.
The majority of neonatal encephalopathy cases are found in infants with a very low birth weight, and include both hypoxia-ischemia and inflammation, a double-hit. Approximately 63,000 infants are born in the United States with a very low birth weight (one to five percent of all live births). In order to understand the effect of such a double-hit insult in very premature infants, this study, Early Intracranial Mesenchymal Stem Cell Therapy After a Perinatal Rat Brain Damage, was undertaken to investigate the neuroprotective effects of mesenchymal stem cells therapy on postnatal rats, whose injury was designed to mimic brain injury in infants with a very low birth weight.
“Stem cells are a promising source for transplant after a brain injury because they have the ability to divide throughout life and grow into any one of the body’s more than 200 cell types, which can contribute to the ability to renew and repair tissues,” said Martin Müller, MD, with the University of Bern, Obstetrics and Gynecology, Bern, Switzerland, and one of the study’s authors. “In our study, the donor cells survived, homed and migrated in the recipient brains and neurologic improvement was detected.”
Assessment of the post-experiment brain damage indicated a neuroprotective effect of mesenchymal stem cell transplantation and a combination of mesenchymal stem cell and erythropoietin (a modulator substance the subjects received on postnatal days six, seven and eight) therapy.
In addition to Müller, the study was conducted by Andreina Schoeberlein, Ursula Reinhart, Ruth Sager and Marianne Messerli, University of Bern, Obstetrics and Gynecology, Bern, Switzerland; and Daniel Surbek, University Hospital of Bern, Obstetrics and Gynecology, Bern, Switzerland.
# # #
A copy of the abstract is available at http://www.smfmnewsroom.org/annual-meeting/2011-meeting-abstracts/. For interviews please contact Vicki Bendure at Vicki@bendurepr.com, 540-687-3360 (office) or 202-374-9259 (cell), or Jacqueline Boggess at jacqueline@bendurepr.com, 540-687-5399 (office) or 202-738-3054 (cell).
The Society for Maternal-Fetal Medicine (est. 1977) is a non-profit membership group for obstetricians/gynecologists who have additional formal education and training in maternal-fetal medicine. The society is devoted to reducing high-risk pregnancy complications by providing continuing education to its 2,000 members on the latest pregnancy assessment and treatment methods. It also serves as an advocate for improving public policy, and expanding research funding and opportunities for maternal-fetal medicine. The group hosts an annual scientific meeting in which new ideas and research in the area of maternal-fetal medicine are unveiled and discussed. For more information, visit www.smfm.org or www.facebook.com/SocietyforMaternalFetalMedicine.
Source: EurekAlert 02.10.2012

Monday, 20 February 2012

More about the reasons for this new blog site

As one of the organisers of last October's public meeting that has led to the creation of the CP Clients and Family Forum (see introductory comments below), I think it’s important to place on record that the clients and family members who attended were very grateful to the President of the CP Alliance, Mrs Marelle Thornton, and its CEO, Rob White, for accepting our invitation to attend, speak, and respond to questions and comments from the floor.
As an unexpected though welcome bonus, a number of CPA board members and senior staff also attended the meeting.
For all the clients and family members who came along, the exercise proved most beneficial and worthwhile, in that all were subsequently contacted by senior CPA staff and asked to outline any concerns with the services they were accessing, or trying to access - after which all concerns were speedily addressed and resolved.
This is an important point to note, since it is undoubtedly the case that many people with disabilities and their families - regardless of which service provider/s they access - are often very fearful and anxious about “speaking out” if they have concerns or problems with a disability service provider, worried they may be targeted for retribution and as a result lose vital services and help.
In fact, experience has demonstrated repeatedly that it is, all too often, simply and solely ONLY by having the courage to speak out in a public forum about issues and problems– through the media, or to a parliamentary committee, or at a public meeting (or maybe now a blog site?)– that the vast majority of individuals with disabilities and their families have any hope at all of seeing those personal issues and problems addressed and resolved.
Unfortunately, this is one of the many sad by-products of Australia’s currently deeply dysfunctional and inefficient (or “broken”, as a recent Productivity Commission report put it) disability care and support system.
Instead of allocating public funds for vital disability services and supports directly to people who need and qualify for it, thereby promoting consumer power and choice, funding has for many decades been allocated to service provider agencies and organisations which then get to decide how, where and on whom those funds are spent.
When service providers enjoy what is in effect a monopoly position, with no alternative sources of help available, then it is entirely to be expected that individual service users will feel vulnerable and powerless.
The introduction of a National Disability Insurance Scheme, as urged by the Productivity Commission, will go a long way towards redressing this current power imbalance between disability service providers and individuals with disabilities and their families, by allocating money directly to individuals to decide for themselves which services and provider organisation/s they wish to access. Where existing service providers are not adequately meeting people’s needs and preferences, it will be far easier in future for new service providers to set up shop, so to speak, in direct response to consumer demand.   
The NSW Government’s pledge to introduce self-directed funding options for all disability service clients by 2014 also represents a major, and very exciting, reform.
Until all these promised reforms are fully implemented, however, people with disabilities and their families really only have two choices when it comes to non-government, not-for-profit disability service producer organisations:
1)      They can sit back passively, hoping and trusting that the disability service provider/s on which they rely for vital services and supports will spend government funds and donations raised in the name of people of disabilities and their families as wisely, fairly and efficiently as possible.
2)      They can get actively involved in helping shape the service provider’s policies, actions and financial allocation decisions by becoming a member of the organisation, attending AGMs, perhaps standing for election to the Board and/or letter-writing.

But many aspects of this second option are problematic for individual clients, particularly if they live in country areas or are on very low incomes. Most people whose lives are affected by a disability such as cerebral palsy are too harassed and exhausted just by the daily struggle to survive - particularly when a disability care and support system is as dysfunctional as Australia’s - to get involved in trying to shape a service provider’s policies and practices.

In addition, a major barrier to having any involvement or influence is lack of information, and very little chance of ever seeing the bigger, overall picture. For example, individuals may be aware of problems, say, for themselves and other people they know in gaining access to vital services, such as therapy, equipment, respite, supported accommodation and/or post-school programs.

But they have little if any way of knowing if this is just a local problem, or a temporary one, or whether these are short or long-term problems facing thousands of people all around NSW in their dealings with a particular service provider. In isolation, individuals have little if any way of knowing – or finding out – overall data such as the length of waiting lists, and whether these waiting lists are growing or being reduced.

As a result, it is all too easy for disability service providers,  if they feel so inclined, to brush aside complaints or concerns from disempowered clients and family members, telling them implicitly or even explicitly that they are merely ungrateful and/or unrepresentative whingers or words to that effect. Without clients having any way of networking and communicating amongst themselves, publicly sharing their views, thoughts and experiences, it is all too easy for a disability service provider with substantial media and PR resources to assert to government agencies, corporate and private donors and the public at large, via glossy magazines and media releases, that their clients are blissfully happy with – even, indeed, overwhelmed with gratitude for - the type and extent of services on offer.

This is, unfortunately, what happens when any country’s disability care and support system is based – as Australia’s is – on an outmoded welfare and charity model, rather than a system based on individual legal entitlement to all relevant, basic and necessary disability services and supports as is now the case in other wealthy countries (and as will become the case in Australia if an NDIS is implemented).

When governments around Australia began injecting substantial funds into disability service provision, from the 1980s on, they simply began handing ever larger sums of money to disability service charities such as the then-Spastic Centre of NSW - established by parents of children with disabilities, as were most such organisations -  to ‘top up’  funds raised by the charities themselves.   

Over time, government (i.e. taxpayer) funding has become a bigger and bigger proportion of most disability charities’ annual income and budget, whilst funds raised from donors and  fund-raising events by the charities’ own efforts now account for a steadily falling proportion of their annual budgets.

Nonetheless, a charity-orientated mentality still pervades the culture and attitudes of some  not-for-profit disability service provider organisations, particularly the older ones that have been around for many decades. Hence the managerial view of clients with disabilities who ever dare to complain or raise concerns as “ungrateful whingers”. Disability service providers who react like that appear to be labouring under the false and misguided impression that clients with disabilities merely exist to serve the organisational self-interests of the provider – and not, as should at least be the case now that governments hand them so much taxpayers’ money, the other way around.

Within Australia’s disability sector, the adverse effects of an entrenched charity-based mentality is worsened by the well-documented fact that over time, all organisations have a natural tendency, particularly as they grow and expand and become more complex, to lose sight of their original purpose and to become more focused on their own internal interests than those of their “customers” or clients.

This tendency is summed up perfectly by the old joke about the administrators of a hospital protesting that the hospital would run perfectly smoothly and efficiently -  if it just weren’t for all those pesky patients….

Private enterprise, for-profit organisations have a very strong incentive to retain a customer focus and remember what they were created to do - because if they don’t, they tend sooner or later to go broke. They have strong, market-signal incentives to listen and respond to their customers and clients, to constantly review their practices and to fight against arrogance and complacency.

Governments too have strong incentives to do the same, because if/when they don’t, they tend to get thrown out of office. 

But in the absence of any consumer power, choice and control - as is currently the case in Australia’s deeply dysfunctional and broken disability care and support system, to again quote the Productivity Commission – then disability service providers can, very unfortunately, get away with being as arrogant and complacent as they want.

The internet is however a hugely powerful new resource for consumer and individual empowerment, enabling people no matter where they live to network, share information, exchange opinions, ask questions and relate personal experiences.

In creating a new networking and communications site for people with cerebral palsy and their families in NSW, the CP Clients and Families Forum hopes this idea might also be of interest to people with various disabilities and their families around Australia, particularly those who currently have no choice but to rely on one monopoly government or NGO  service provider.   

Sue O’Reilly

Monday, 13 February 2012


This new site is designed to link thousands of people with cerebral palsy and their families throughout NSW who access, need and - in the absence of direct client funding - currently have little choice but to rely upon the services and supports that disability service providers, both government and non-government, choose to provide.
Its creation follows a public meeting in Sydney in October 2011 organised by a group of clients and families seeking franker, more open dialogue and information-sharing from one of NSW's biggest non-government disability service providers, the Cerebral Palsy Alliance (formerly known as The Spastic Centre of NSW), about the quality and nature of its current services, as well as future service delivery plans.
The impetus for the public meeting arose from the organisers' deep conviction that people with disabilities and their families are fundamentally entitled to detailed, factual information about all services delivered in their name, and on their behalf, by salaried professionals. 
We believe that disability service providers are - or should be - answerable to people with disabilities and families as to how and on what they spend taxpayers' funds and all public donations sought in the name of people of disabilities and their families; our names.
We believe, for instance, that data on waiting lists for vital disability services and supports should be routinely published so everyone knows the real, actual picture. 
We contend, for instance, that it is cruel to lead people with disabilities like cerebral palsy and their families to believe that a vital service or support is, or will be, readily available when needed - only for people to discover when they request that vital service or support that there is a one, two or three-year waiting list, or that it is not available at all.
The Cerebral Palsy Clients and Family Forum seeks to promote honesty, openness and greater accountability. We know and acknowledge that disability service providers are trying to do a very difficult job in a dysfunctional, underfunded and severely rationed disability care and support system.  But we believe that openness and honesty are always preferable to PR spin and secrecy, and we hope this site will provide a useful and constructive new forum for people with cerebral palsy and their families to share information amongst themselves, and to communicate their thoughts, views and experiences to service providers in NSW.