Application for IKEA Partnership
with
CHARGE Syndrome Association of Australasia
Date:Friday 19 July 2013
Author:Lisa Russell, Director
CHARGE Syndrome Association of Australasia
0418 151 405
Attention:Richard Wilson, Sustainability Manager
IKEA Australia
Background – About CHARGE Syndrome
CHARGE syndrome is a recognisable (genetic) pattern of birth defects which occurs in about one in every 32,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child.
Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. They spend many months in hospital and undergo many surgeries and other treatments; especially in their early years. Swallowing and breathing problems make life difficult even when they come home. Most have hearing loss, vision loss, and balance problems which delay their development and communication. All are likely to require medical and educational intervention for many years.
However! Despite these seemingly insurmountable obstacles, people with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations. One of the hidden features of CHARGE syndrome is the determination and strong character these people display.
It is this determination that drives the CHARGE Syndrome Association to improving the health, education and wellbeing of children and adults with CHARGE Syndrome and supporting their families.
Eligibility
Be a registered Not for Profit with Deductible Gift Recipient status, working to address the development of children including disadvantaged children, living conditions, health, education, early childhood development.
Not for Profit with Deductible Gift Recipient status
The CHARGE Syndrome Association of Australasia is a registered company limited by guarantee under the Companies Act; it is a registered charity and has Deductible Gift Recipient (DGR)status (CC29770).
Working in partnership with parents
It is widely acknowledged that parents are the most knowledgeable about their child and the practices and surroundings that are most helpful to them. Discussions with parents reveal that they themselves become the coordinators of their child’s services.
Parents require professionals to help them to gather and interpret information, answer questions, engage in discussions, provide support and help in decision-making and to share theirprofessional expertise with the family. It is with this in mind that our services comprise programmes that address the development of children with CHARGE syndrome, and educating parents about living conditions, health, education and early childhood development.
Our programmes
Knowing the pressure on families with children with disabilities, the association places a large emphasis on keeping the family unit informed, included and staying together. Our programmes are predominantly aimed at the parents, carers and medical and educational professionals, which will in turn enhance the lives and opportunities of CHARGE children.
Focus!
The association has recently undergone a series of strategy meetings whereby a new vigour and passion for the organisation has come to the forefront. Subsequently, we have restructured the Board of Directors from a flat state-based Director structure to a now more meaningful and purposeful board comprising positions that focus on education and training, outreach, fundraising and communications.
Partnering with IKEA will mean we can implement this new structure and programmes and take CHARGE to a new level. We believe the partnership will become the foundation of our funding strategy, and complemented by other funding sources.
Be a national organisation providing services in Australia with projects that have an impact on and are located on a local level in Sydney, Brisbane and Melbourne, ideally close to IKEA stores.
Have meaningful, varied volunteering opportunities for IKEA employees in Sydney, Brisbane and Melbourne.
The association is managed by a passionate and dedicated committee of volunteers across Australia and New Zealand – primarily parents of people with CHARGE syndrome, as well as medical professionals and others who are interested in the condition. Currently the association does not operate from an office; we work virtually via email and conference calls.
In the event of securing a partnership with IKEA, we would quickly acquire premises close to the Sydney, Brisbane and Melbourne stores to enable close proximity for IKEA employees to visit and volunteer their time.We would, of course (!), need to fitout the offices with suitable office furniture! – as well as purchase appropriate technology. Establishing offices would also enable the association to expand and continue after the 3-year partnership.
We do not receive any government funding; we rely on donations. As such, the funding provided through the partnership with IKEA will enable the association to employ one paid person in each office who willcoordinate a range of programmes such as those listed in table below. Programme costs will include payment for the venue, facilitator, catering, hiring of audio equipment and, sometimes, travel.The table also shows how IKEA employees couldvolunteer their time to the association.
Event / Item / Target audience / Comments / Frequency / Potential volunteer contribution / participationBi-annual conference / Families, carers, medical professionals / A range of topics presented by medical professionals and parents. / Every 2 years (Oct 2014, 2016, 2018) / -Sourcing items for conf. bags
-Packing conference bags
-Writing / sending newsletters
-Administration
Welcome to CHARGE / New CHARGE parents / About CHARGE, the younger years, medical challenges, contacts. / 1 per year / per state / -Help with setting up / packing up
-Assist with looking after children (if required)
-Administration
CHARGE children and their education / CHARGE parents / Early intervention, choosing the right school, getting the assistance they need. / 1 x per year / -Help with setting up / packing up
-Assist with looking after children (if required)
-Administration
CHARGE Clinic / CHARGE Children / families / A combined hospital appointment comprising genetic testing, immunology assessment, audio, ???. The testing confirms diagnosis and gives subjective direction for future. Currently Sydney only; wish to expand to other states. / 3 x per year / N/A
Triple P – Positive Parenting Programme / Parents, carers, siblings / Parenting programme designed around kids with special needs; addressing behaviours. / 2 x per year / per state / -Help with setting up / packing up
Family picnic days / CHARGE families, friends & carers / Informal picnic / BBQ for families to meet and get to know one-another, share experiences. / 2 x per year / per state / -Help with setting up / packing up
-Assist with looking after children (if required)
-Sourcing ideal locations
Event / Item / Target audience / Comments / Frequency / Potential volunteer contribution / participation
Fathers and brothers’ conference / Fathers (and brothers) of CHARGERs / Structured but informal conference, mental health, depression, bonding. / 1 x per year / -Take photos
-Write articles
-Help with setting up / packing up
-Administration
CHARGE Children conference / CHARGE children / Designed specifically around the complexities of CHARGE including sensory play, balance, dance. An opportunity to meet other children with CHARGE, give the sense of a “school camp”, inclusion, belonging, acceptance, independence. / 1 x per year / -Taking photos
-Write articles
-Help with setting up / packing up
-Administration
Taking CHARGE – Family Health and Wellbeing / CHARGE parents / Taking care of the family, health, hygiene, diet / nutrition, exercise, relationships, social, mental, coping strategies. / 2 x per year / per state / -Help with setting up / packing up
-Assist with looking after children (if required)
-Administration
Big brother and big sister programme / CHARGE children / Volunteers can be matched with a child with CHARGE and extend their friendship, read books, play, shopping etc. under supervision of parent / carer. This will give parents a chance to get things done! – and give CHARGERs the opportunity to build a friendship. / Ongoing / -Read books
-Play
-Take to park
-Shopping
-Accompanying family to appointments
Equipment / CHARGE children / Funding may be provided to families for equipment such as customized bikes, walkers, modified car seats etc. that is not covered by the government. / Various / N/A
Food subsidy scheme / CHARGE children / Part payment may be provided to families to assist with the cost of PEG feeds. / Ongoing
Website / Families, carers, medical professionals / There are costs associated with hosting and maintaining the website. / Ongoing / -Write articles
-Update text
Be able to evaluate and measure what you do to show credible, tangible, practical results / impacts and have transparent financial reporting.
Evaluate and measure
A business plan will be prepared showing objectives and milestones of which progress will be monitored.
Lesson plans will be developed for each programme; ensuring goals and objectives are achieved. Results and impacts of each programme will be obtained through the following methods, and adjusted accordingly:
-Feedback forms
-Surveys
-Verbal questioning (informal)
The Directors will continue to contact families and invite feedback in relation to the impact of the programmes.
Financial reporting
Thorough financial reporting processes are in place allowing transparent accounting practice.
Financial reports can be provided as agreed and appropriate.
Conclusion
The association is excited by the prospect of partnering with IKEA over the next three years! The amazing work that can be done to improve the lives of children with CHARGE syndrome will be life-changing – for not only the families, but your IKEA employees.
And just imagine the promotional aspect… “IKEA are CHARGING on”!
For further information or clarification, feel free to call Lisa Russell, QLD Director of CHARGE Syndrome Association of Australasia on 0418 151 405 or .
Application for IKEA partnership – CHARGE Syndrome Association of AustralasiaFriday 19 July 2013
Lisa Russell, 0418 151 405, ge 1 of 1