A "Typical Year" @ MDA

---

Each year, the MDA assists many individuals and families with Information Services, Support, Respite, providing funding for Research ...

Sometimes the people change, sometimes the problems are different and sometimes the number of people we assist varies, but, one thing never changes – MDA is there to Support and to provide Hope.

Here is a “typical year” for MDA.

Information
The 1 800 Freecall Service, provides members of the MD community living in Rural and Remote regions the ability to contact the MDA at the cost of a local call. During the course of a typical year many hundreds of calls are made to the MDA.

The MDA’s Internet presence, “The Home of MDA” located at www.mda.org.au was the first MD website in the world to go online back in 1995. Since that time the site has attained over 20 million hits and averages nearly 250,000 per month. The site has a great deal of MD related information available and has received significant critical acclaim from the international MD Community and those supporting them.

The monthly newsletter Meetings Dates Activities is the Association’s conduit to its community with over 9,000 copies mailed each year and providing essential information on Programs and Services.

The Messenger magazine is mailed to over 20,000 people per annum and highlights the latest in Programs, Services, informs the political and corporate arena of what the MDA is doing within the community and developments in Research.

The annual Information-MD! Seminar attracts an audience from throughout Australia and overseas. With speakers informing on the latest in Genetics, Respiratory Medicine, Orthopeadics, current Scientific Research, living with the disorder, Physiotherapy and many more topics.

Muscle Clinic in the hospital setting provides members of the MD Community with a central, coordinated approach to the management of their circumstance. The MDA is highly visible at these clinics and provides the opportunity for interaction between specialists and the lay agency. The MDA is an integral link in the chain of people providing support and often the “shoulder of support” offered can make a significant difference to what can otherwise be a traumatic experience.

Printed Information is maintained and developed to reflect contemporary thought in practices supporting the management of the disorder. This information is made freely available to the MD community, specialists, medical and paramedical, in fact any agency or individual that provides a supporting role.

Information & Support Group Meetings also provide the opportunity for dissemination of information and interaction between members of the MD community. These groups are conducted on many levels - be it disorder specific, gender or age specific, clinical or scientific research or management of the disorder. The outcomes benefit all participants.

Since the inception of the respite program in 1988, Camp MDAhas
been conducted on 74 occasions to August 2009. This significant program has delivered over 120,000 hours of programmed activity to the campers who - range in age from 6 to 72 years old. In addition, over 250,000 hours total or over 16,000 hours per annum of respite have been delivered to the primary carer or family of those
who attend Camp MDA.

A more recent program, OperationMD ShortBreak provides as the name implies, a short break over the weekend for parents or primary carers and a recreational opportunity for the client. Over 20 instances totaling over 3,600 hours is currently being delivered on an annual basis.

Futures For Young Adults continues to deliver recreational, vocational and educational programming to a group of young MD clients. The Futures program curriculum stimulates and provides unique opportunities for its participants. Over 12,000 hours of programmed activity are provided annually.

Through the conduct of Adult Social Groups, the MDA provides the mechanism and opportunity for like-minded individuals to socialise and achieve true mutual support. Many new friendships have been formed and useful information exchanged to the point where “struggling with the disorder has been shared between new found friends.”

Through Camp MDA, we provide “on the job” training for university students during the course of their professional placement. To date, a total of over 86,000 hours or 12,000 per year of education and training has been provided by MDA. This is conservatively costed at over $2.5 million.
.
Education and training extends beyond the provision of this service to university students. The MDA is also involved in supporting school integration staff and aides when a child affected by Muscular
Dystrophy enrols at the school. Often we are called to advocate between the parents’ and childs’ needs and the school’s interpretation of what is deliverable.

Regular interactions are also maintained with health professionals to ensure that there is a clear understanding of what the dystrophic process entails and how it impacts upon the individual and family unit. The MDA’s philosophy is, that armed with accurate and timely information, every opportunity to provide seamless support will be realised for the client and their family. Making the journey through life just that little bit more comfortable.

Given the small, but dynamic size of the MDA staff complement, the conduct of many tasks, activities and programs would not be possible without the support of dedicated volunteers. From Camp MDA to “shaking a tin” during the course of our Annual Appeal or assisting with the preparation of large mail-outs. Volunteers make it happen! Each year volunteers contribute over 8,000 hours of support and if costed at the most conservative rates would amount to over $150,000 of contribution every year.

Research
The past decade has seen scientists make significant advances in the understanding of the mechanisms involved in the dystrophic process and more importantly, a better understanding of what actions will bring about a timely solution for the devastating effects of Muscular Dystrophy.

The MDA made a conscious and deliberate decision in the late 80’s to work toward the establishment of a dedicated research facility to accelerate the rate of research. In 1993, the Melbourne Neuromuscular Research Institute (MNRI) was born, and since then, research sponsored by the MDA has been critically acclaimed
by researchers both here, across Australia and around the world.

Today we are at the “cutting edge” and close to fulfilling the original hopes, dreams and aspirations for members of our community. And scientist from the MNRI are more than playing there part in the laboratories - they form an integral part of the MDA’s programs. From contributing to Information Groups, writing for newsletters or attending CampMDA as a friend. It all amounts to a step closer to the solution.

The Disability Sector is a competitive market place. Not in the sense of profit but more to do with meeting societal expectations to provide services and support that are safe, relevant and delivered professionally. Organisations that do not meet this measure, may forfeit the right to represent their clients. From an MD perspective those clients do not have any alternative holistic support structure available.

MDA undertakes an annual review of legislation and protocols that direct its activities to ensure compliance. Contemporary guidance concerning OH&S, privacy, grievance, finance and duty of care are superimposed over existing business processes to identify inconsistencies. Those processes, expressed in the form of Standard Operating Procedures and Directives are then updated to reflect any changed circumstance.

The Government requirement for MDA compliance with established legislation and Disability Sector related policies is not new. What is new is the increasing desire of Government to undertake qualitative and quantitative checks to ensure and ascertain compliance.

The MDA business processes have evolved to meet the challenge of audit preparation without any dilution of client service support. Given the small size of the MDA staff, this has been achieved through integrated training and education which is inculcated into all aspects of MDA activities.

The increased interest of Government in Disability Sector organisations provides MDA will opportunities for increased interactions, recognition and representation of the MD community. MDA strives to maintain and improve its already credible standing with Government. That interaction has and will be in the interests of
the MD community and the wider Disability Sector and will help the MDA to continue to provide Hope.

The Muscular Dystrophy Association developed from the most basic grass roots, to an organisation which rightfully commands respect for members of the community it serves. From day one, the MDA has been unwavering in its support of Quality of Life Programs, to effect an impact on Today. It has also invested significant human resource into research efforts to provide for Tomorrow, so that the new members entering the MD community can look with Hope towards a viable solution to these devastating disorders of Muscular Dystrophy.

Support for Today and Hope for Tomorrow – The Muscular Dystrophy Association means… Hope!