Interconnections Worldwide

Working internationally to share information, help build knowledge and support teamwork around babies, children and young people who are disabled, marginalised or vulnerable

The home of Team Around the Child (TAC) and the Multiagency Keyworker

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New Zealand Down Syndrome Association supported by Southern Stars Charitable Trust

 

Charity benefitting from Trust's telephone appeal. Can you join in? 

New Zealand Down Syndrome Association

Mission Statement
"To promote the participation of people with Down syndrome in their community" 

Primary aims:

  • To inform and support families/whanau whose lives have been changed by Down syndrome
  • To promote and advocate for positive attitudes
  • To promote the rights and inclusion of people with Down syndrome
  • To review policies and lobby government, and other agencies

The NZDSA offers:

  • new parent support - through trained support parents
  • national coordinator
  • regional groups - activities throughout thirteen centres in New Zealand including coffee mornings, family events, guest speakers and individual support and advocacy
    newsletter - a quarterly update of news, information and stories, sent to all members
  • information packs - for schools, professionals, family and friends
  • website www.nzdsa.org.nz
  • freephone number 0800 NZDSAI - so parents and professionals can easily be linked to support parents or a central information number

Visit: http://www.nzdsa.org.nz/index.htm

Southern Stars Charitable Trust

Providing a better life for special needs and disadvantaged children in New Zealand

Southern Stars is a Charitable Trust that is dedicated to providing a better life for special needs and disadvantaged children in New Zealand.

That is achieved in three ways ...

1.      By raising and distributing funds to children's charities.

2.      By providing fundraising resources for children's charities.

3.      By creating entertainment events for special needs and disadvantaged children.

As a result the Trust has become renowned for enabling many established children's charities to be the benefactors of the Trust's event programmes. Southern Stars stages professional pantomimes i.e. K.I.S.S. (Kids in Show Seats) which have entertained over 50,000 special needs and disadvantaged children nationwide. 

Visit: http://www.southernstars.org.nz

 

 

 

International Consultancy Service to help agencies work together

Peter Limbrick developed the TAC (Team around the Child) model while working with UK families of infants with neurological impairment in the 1990s and published the first book on the subject in 2001. Peter published a collection of essays on TAC in 2009.

  • He has since developed the model as horizontal teamwork for any children or adults who require support from more than one agency at the same time. 
  • He now travels widely to help agencies design systems of interagency collaboration. 

Peter has recently worked in Australia and Canada and the following are reports on this work. 

Australia

Pippa Proctor, Assistant General Manager, Programs and Partnerships Division, Department of Education and Early Childhood Development, Victoria, wrote in November 2011: 

"On behalf of the Department I would like to thank you for visiting Melbourne and presenting on the Team Around the Child, Keyworking and Transdisciplinary practice. 

"We have received very positive feedback from participants from both sessions, particularly around the content and delivery of your presentation. 

"We greatly appreciated your focus and work on the day prior to your major presentation which ensured we had clear and consistent messaging to our external stakeholders. We found the discussion you facilitated with our team and the key messages you then integrated into your presentation in response a particularly valuable contribution to the success of the workshop." 

Canada

Roxanne Young, Manager Children's Developmental Services, Halton Region, Ontario and host for Peter's work with agencies in the region wrote in November 2012:

"In sharing the news of Peter's visit to Ontario with colleagues in Halton Region it was identified that there were two groups of people that Peter would meet with. One was the steering committee and training committee for Halton's model of Service Coordination. This group spent half a day with Peter and left the discussion with some key take-aways. We recognized that we have a good model however it is a 'surface' model of bringing service providers together with families to discuss who does what but it stops there. After learning more about Horizontal Teamwork we recognize we need to take our commitments and collaboration to the next step. We had an interesting discussion about outcomes and how we would know if we are making a difference for families by working together.

"The second group that met with Peter was the Integrated Planning Committee of the Our Kids Network in Halton. This included representation from all of the sub-committees of Our Kids spanning from services for 0-18 year olds, agencies from children and youth services to education and health services. We have been struggling to define 'service integration' in our community. The concepts in Peter's book Horizontal Teamwork in a Vertical World really helped us recognize where we are and where we need to go in order to step outside of our organizations and integrate our services to benefit families.

"It has been a month since we met with Peter and we continue to make reference to our conversations with him.  'Horizontal teamwork', 'children with multifaceted conditions', 'key worker' are terms used on a regular basis. People who did not attend the sessions with Peter have witnessed our excitement about moving forward and they have jumped on board. Peter's book has been widely distributed and I have requests for more.

"We recognize we were stuck and the thought-provoking conversations with Peter, his wisdom and ability to communicate in a way that respected the work we have done were what we needed to reset our compass."

 

Lorna Montgomery, Manager, Infant & Child Development Services Peel and Service Resolution Peel, Ontario (Services sponsored by The Credit Valley Hospital and Trillium Health Centre) wrote in November 2012: 

"On October 19th, we had a forum for service providers from Peel Region from children's mental health, developmental services, child care and early learning, education, and adult services. Thus, the audience was cross-sectorial, cross agency, and cross disciplinary. 

"In many ways, the 'key worker' model is not new, and most services have an internal model that uses that concept. A couple of agencies represented are currently moving toward an internal key worker model, so everyone had some familiarity with the concept. 

"It is between agencies where the 'key worker' model often doesn't take place, and thus the service for families receiving services from many agencies seems choppy, inflexible, and anything but seamless to them.  Often there are jarring disruptions in service between agencies, in particular, but not confined to, the movement from services for children to services for adults.  We have far to go before we have achieved a seamless service system in which families experience hand-off's in such a way that makes them feel secure. 

"It is a month since Peter talked with us in Peel.  It is very interesting to note that in various meetings and case conferences, I have heard reference to Peter's talk in Peel.  Three things in particular, keep coming up:

Saying we cannot do something because we haven't the funding or resources is to disempower ourselves.

We need to start talking about individuals with a single multifaceted condition, not as having multiple handicaps. 

It is the manager's responsibility to set the stage for horizontal teamwork between services.

"I have had many comments, and have felt myself, that Peter's work with us parallels exactly what we hope our staff do with the families they serve.  Jerree Pawl, of Zero to Three, said that in managing people who service families, we want to 'do unto others what we would have them do unto others'. 

    "Peter prompted reflection with our partners at the tables (we had mixed up participants so they were not with their office partners), didn't tell us what to do, but made us think about how we could serve people together better, and to reflect out loud with each other, in response to his key questions to us.

    "It was a valuable day for our community, and I have had many people thank me for having arranged Peter's time with us." 

Peter Limbrick can visit your agency

The process is uncomplicated as follows:

  • He will enter e-mail discussions with you to ascertain what your needs are.
  • A date can then be agreed if you and he agree to work together.
  • There can be continued e-mail discussions before the visit so that Peter learns as much as possible about your work and the steps forward you want to make.

Fees

  • For a local or regional agency: £850 per day.
  • For a smaller service within a larger agency or department: £650 per day.
  • For parents, carers, service users: No fee, expenses by discussion.
  • For a government agency: By negotiation.

Reductions in the daily rate are made for work over a number of days.

Expenses

Once a date is agreed, every effort will be made to secure other work around the same time so that flight costs from London can be shared. Expenses will then be: 

  • A share of flight, airport parking, travel to and from airports.
  • Hotel accommodation for two nights for each project.
  • Travel to and from venues from the hotel.

    Please contact Peter to begin informal discussions

    Peter Limbrick
    Interconnections
    Parks Farm
    Clifford, UK
    HR3 5HH
    Tel/fax: 01497 831550
    E-mail: This email address is being protected from spambots. You need JavaScript enabled to view it. 

Peter Limbrick is author of Horizontal Teamwork in a Vertical World: Exploring Interagency Collabopration and people empowerment

and TAC for the 21st Century: Nine essays on Team Around the Child

HealthMatters™ Community Academic Partnership (CAP) – news from Chicago

CAPHealthMatters™ CAP is a collaboration between community-based organizations and an academic institution supporting people with developmental disabilities (DD). 

HealthMatters™ CAP aims to improve the health of people with DD using evidence-based curricula and training.

Through HealthMatters™ CAP, we are introducing a new approach for community-based organizations and academic institutions to work together to find practical solutions that people with DD can use to maintain healthy lifestyles. 

We hope this website will give you information on ways to promote health among people with DD for sustainable changes. 

http://healthmattersprogram.org/

Save our babies!

Alarming new data reveals that around 42 children are born with a birth defect each day in the UK. 

A leading children's disability charity has called for urgent research action as alarming new data reveals that around 42 children are born with a birth defect each day in the UK; that's one in every 45 live births – and one in every 202 pregnancies leads to a termination due to foetal anomaly.

Newlife Foundation for Disabled Children has called for more investment in vital medical research and today launched its ' Save Our Babies' appeal, in the light of these new findings. The charity – which has funded over £14million of targeted research, leading to the discovery of around 50 genes responsible for birth defects – says that higher levels of investment are key to combating the conditions which lead to lost pregnancies and loss of ability and health in our babies.

The new data – published by BINOCAR (British Isles Network of Congenital Anomaly Registers) – also shows that a particular group of conditions affecting the abdominal wall is on the increase. Gastroschisis causes a baby's bowel to be formed outside of the body and Newlife has been leading research into this disturbing condition.  Newlife has been in talks with the Luey Jacob Sharp Foundation – founded by Premiership footballer Billy Sharp and his partner Jade Fair following the death of their own son from the condition. The two organisations will be working together to fund further targeted gastroschisis research. 

Newlife has also funded research into oesophageal atresia and lung malformations, which the BINOCAR statistics reveal are also on the increase.

Newlife's Save Our Babies appeal will focus its attention on funding vital UK research to improve understanding, diagnosis and treatment of such conditions and work towards prevention. It is appealing to individual donors to fund an hour of such research at £29, or a day for just £238. Newlife guarantees that 100 per cent of donations to this appeal will be restricted so every penny will go directly to fund this important work, with supporters getting feedback on the research supported.

The BINOCAR data is based on the recording of birth anomalies in six areas of the UK – North of England, South West, East Midlands and South Yorkshire, Wales, Wessex and the combined counties of Oxfordshire, Berkshire and Buckinghamshire. Newlife has been a long-time supporter of these registers, urging government to encourage their expansion throughout the UK as they are the only monitor of such public health knowledge and play a vital role in developing services to meet future need.

Monitoring of birth defects started in the 1960s, following the Thalidomide scandal, and provides key data on the conditions that are the biggest threat to child health and pregnancies.

The BINOCAR data shows that the South West of England appears to have a significantly higher prevalence of birth defects than other UK regions monitored, while the combined areas of East Midlands and South Yorkshire record much lower levels. Comparing the information to European registers shows the prevalence of birth defects in the UK is similar to other parts of Europe, although congenital heart disorders and urinary problems are noticeably lower in the UK.

The data also backs up previous findings that maternal age is related to these conditions. Mothers in the 25-29 age group have the lowest prevalence of all anomalies. It also shows that the prevalence is higher in the under-20s and significantly higher in women over 40.

In addition to its investment in medical research, Newlife provides information and equipment for disabled and terminally ill children across the UK, with families supported through its National Nurse Helpline – freephone 0800 902 0095. The charity is seeing an increase in the number of families needing help as more children are affected by disabling conditions and surviving.

The new data shows that 95 per cent of children with congenital anomalies now live past their first year. Newlife CEO Sheila Brown, OBE, said: "As treatment of these and other conditions such as childhood cancers, prematurity and infections are improved, we are pleased to see the infant mortality rate dropping. However, many of these children have on-going health and care needs and an increasing number of families are turning to Newlife to get the essential equipment their children need for every day life; items such as specialist cots, mobility aids, seating and therapy equipment. The charity is currently experiencing demand for around £2million of equipment a year – with the figure growing as statutory services cut their budgets.

She added: "Families know the real cost of not funding research, in seeing the impact of their babies' health and ability. For many whose children have life limiting conditions, research is their only hope."

Anyone who wishes to help Newlife combat such conditions through the Save Our Babies appeal should visit www.newlifecharity.co.uk or call freephone 0800 988 4640.

To view the BINOCAR report in full, go to: http://www.binocar.org

share your information  Cartoon © Martina Jirankova-Limbrick 2011