Do you know about MAP?
MAP stands for MPS Assistance Program. Through MAP the Society provides funding for one-off expenses related to MPS. We know that many of our families (due to necessity) are expert in seeking services, funding for their child however all sources have their limits. A MAP grant may be used to purchase equipment and services that other programs may not fund or fail to fully fund..
Since the time of our first MPS conference, information about MPS is both the same and changed - there are now real advances in treatment and neonatal diagnosis bringing realistic hope and choices for the future. The journey has changed for many. But for many, the beginning remains the same - a diagnosis of a condition that is new, and often unexpected. A diagnosis described by one family as life altering. A diagnosis that means the journey has a definite end, with serious difficulties along the way.
For those of you whose journey has recently begun, it can be a bewildering and even confusing time. You will hear and read discussions on different aspects of treatment trials and options, some of which may not be relevant for your child. Because MPS is a complex group of conditions, each specific diagnosis has differing outcomes, with different implications for life. However, families will find that within the MPS Society and at conferences, there is a sense of community, of shared concern one for the other, a sense of being a fellow traveller, to share the good times and the sad times and to give each other tips along the way.
You are the experts, and as professionals we constantly learn from you what to expect and how best to intervene in your journey. Over the years, I have been with many families at the time of diagnosis - standing beside them, not in their shoes but close by. My comments are based on these experiences, and I am grateful for the insights I have gained from all the families.
The time of diagnosis is usually a time of shock, followed often by despair, fear for the future, loss of hope and expectation. “Why me/us?” is a common question. Often families will experience a feeling of disbelief, particularly if their child is functioning well – this can be followed by feelings of anger towards the professionals –
Some families go off to see other doctors, naturopaths, religious advisors, search the Internet - hoping and praying that this information is wrong. Some families conversely may feel relief - they may have felt that something was wrong, but have been reassured by professionals, even told that the problem is theirs - that they are poor parents, over anxious.
It is a journey they do not want to start, and one for which they can not usually be prepared.
The implications can be profound - not only is a loved child given a diagnosis for life, the parents may need to consider changing their lifestyle and working patterns in the future should their child need increasing care. Schools will need to be considered. At a time when parents are struggling to deal with their own reactions to the diagnosis, they must also help siblings, extended family and close friends deal with this information. They must take in vast amounts of often strange bewildering information, consider the genetic implications for themselves and future pregnancies, for their other children who may be carriers.
People feel that they have been given a different identity - that they are labelled, that they occupy a different place in the world than before the diagnosis. Their child too can seem to have been replaced with a different child - a child with MPS instead of Johnny with blue eyes a big smile freckles and blond hair. Johnny is of course still the same little boy but the diagnosis can take over.
All these reactions vary from parent to parent. They are normal and to be expected. However partners may experience feelings differently and deal with the information in different ways. This can cause friction at a time when support is needed. Partners can feel hurt and alone, although many people also can grow closer and pull together to overcome the adversity they are experiencing.
People react differently, based on their past experiences – we all base reactions partly on how we have reacted in the past, if that reaction has seemed successful. So some people want to withdraw, to even put the diagnosis aside, to deny it. Others seek out information actively by searching the Internet, talking with other parents, travelling overseas to consult professionals, reading the literature - by being active.
Again all these responses are quite normal, and need to be tolerated in an understanding way by professionals.
Professionals have a duty of care. There are 10 important aspects of professional contact at the time of diagnosis:
What is important is for there to be a trusting relationship that is mutually respectful between professionals and families. Without trust and goodwill, nothing will work -families will feel unsupported, be suspicious, search fruitlessly for new solutions and answers. Families may cut off contact, denying themselves and their child valid resources. Families can fragment, siblings start acting out and causing major problems at school in the community, to themselves.
The are 11 primary expectations families should keep in mind. Families should expect:
Margaret Sahhar is senior social worker at Genetic Health Services Victoria, with 30 years experience. She currently works in the MPS Clinic at the Royal Childrens Hospital, Melbourne, and also coordinates the Graduate Diploma in Genetic Counselling (University of Melbourne). Her main area of social work practice has been with children with disabilities and their families. She is committed to the importance of support networks such as the MPS Society, and has been involved since the beginning of the MPS Society. She has attended MPS Conferences in Australia and overseas. In 1998, Margaret, founded the Genetic Support Network of Victoria (GSNV) together with interested parents and others from genetic support groups..
Families are all very different both in composition and function. The mix of services you choose for your family are, therefore, specially selected to maintain the healthy functioning of your family.
Specialist medical care is your first “port of call”. Primary health care and advice is essential – preferably through the specialist MPS medical practitioners, and their team members, who are usually found in the major Children’s Hospital of your State.
Don’t wait for a crisis – gather a support team around you. Your family may have the services of a genetic counsellor, a specialist hospital or community social worker, a specialist metabolic nurse, physio, occupational therapist and/or a welfare worker.
When people offer help - say “YES”!
Social services, community services, services for those with disabilities are provided and funded from many different sources. This system is a blessing in some respects but has disadvantages.
Advantages include –
Disadvantages include –
Australia wide – include Centrelink, Commonwealth Carelink and the Commonwealth Rehabilitation Service.
Include genetic and disability services, local councils etc
I have included a services checklist at the end of this document. It is a starting point only as services vary from state to state.
Each family has different needs and the services need to ebb and flow over time …
Families advise the most valued service for their MPS child has been/is
There are many paths to the services you need but I strongly recommend that you identify someone who gets to know you and your family and takes a genuine and ideally, an ongoing interest in you all. This person can be genuinely useful to you – can advocate and facilitate referrals for you.
Make a map/diagram of your family – parents, children, grandparents, everyone is important. Make it a family activity - list present needs. Identify the gaps - What is it that would help you, your family members or your MPS child? What is reasonable and possible to meet these needs?
Two heads, three heads, are better than one – get together with others and share information. Listen for ideas – be creative … review your list regularly …
Internet searches – start with your own Australian MPS Society website www.mpssociety.org.au
Commonwealth Carelink Centre 1800 052 222 www.commcarelink.health.gov.au/
CISA – www.infosearchweb.com/ provides full social services listings for South Australia.
Check with your local council for a list of Community Forums and which agencies attend them.
Your general practitioner; the specialist medical practitioner who deals with the management of MPS complications; and the specialist allied health team (genetic counselors, social workers, psychologists, physiotherapists, occupational therapists) usually available to you through the Children’s Hospital in your State.
Maternal and Child Health Care Nurses provide good information and support and are locally based.
For all pensions, disability payments for children, families, adults.
Website: www.centrelink.gov.au. Telephone 13 2717 for information re disability or 13 1021
for an appointment at a Centrelink Office. Family Assistance office 13 6150.
Contact the Disability Officer and/or Social Worker in your local office.
The Disability Officer/Social Worker in Centrelink has access to information regarding services in the local area and those services which are state specific, e.g. South Australia has the Disability Information Resource Centre (DIRK) and a wide range of services through Options Co-ordination.
More importantly these specialist officers are able to look at the family circumstances holistically and are able to advocate to Centrelink officers in different sections to ensure the family receives the best possible mix of services/benefits.
The Disability Officer/Social Worker is also able to assist an adult or teenager with MPS and can advocate on their behalf. The Disability Officer is also the person to contact regarding referrals to CRS Rehabilitation Service, and to assist with employment options. Telephone 13 1021.
If you are unhappy with a Centrelink decision – always appeal the decision and follow the appeal through to the Tribunal level – where outside members of a panel examine your case.
A professional service to assist you access community services including pre-school, school options and funding packages tailored to meet the needs of a family. This varies from State to State but is generally administered through the State Departments of Human Services/Community Services.
All families may be eligible for the Federal government schemes and assistance including The First Home Owners Scheme – Telephone 13 2161. For rental assistance and emergency housing contact the State based housing authority, e.g. in Victoria Tenants Union 1800 068 860, in South Australia the South Australian Housing Trust 13 1299
Home equipment. There is often a need for specialist equipment in the home – the State based Domiciliary Care agency is often funded to supply equipment. Rails, home modifications are normally provided with Home and Community Care (HACC) funding however the agency may vary from State to State.
Telstra provide a national hotline with information about communication aids –
Telephone 1800 068 424 (voice) 1800 808 981 (TTY)
Australian Hearing Services provide services for children with a hearing impairment
Telephone 13 1797 for connection to your nearest centre.
Victorian Aids and Equipment Program – provides subsidized aids through public hospitals
Technical Aid for the Disabled – in Gippsland, NSW, SA and WA
National Continence Helpline on 1800 330 066
Long term care for children with disabilities needs to be discussed with your medical team and referrals made to the appropriate State health department.
Regional Carer Respite Centres will give you information about services in your area. Telephone 1800 059 059.
There are also State-based Carers’ Associations which can give information and assistance.
Contact your local council for other options.
You need back up people in your family support team!
General Disability Groups
Association of Genetic Support of Australasia (AGSA) Telephone (02) 9211 1462
Genetic Support Network of Victoria (GSNV) (03) 8341 6315
Association for Children with a Disability is a Victorian parent organization which has an excellent book “Through the Maze” which outlines both Federal and State services (03) 9500 1232.
Specific Disability groups
MPS Australia – contact the organization for family representatives in your state.
Telephone (02) 9476 8411
MPS support groups internationally are found in USA, UK, Canada, Germany, Austria, Brazil, and Italy and the New Zealand Organisation for Rare Disorders. Their websites are available on the internet – find the links on the MPS Australia site.
Welfare Services are often available to those who have immigrated to Australia, e.g. Greek Welfare Services or Ethnic Link Services in South Australia.
NICAN – a national service on sport, recreation, tourism and the arts for people of all ages.
See their website - www.nican.com.au
Easy Access Australia has information about accessible transport for people with disabilities.
See their website – www.easyaccessaustralia.com.au
Transport services in your State – check with hospital social workers, and personnel at special schools and local councils.
Government Ombudsman – contact for complaints about a service in your State
Commonwealth Ombudsman – contact for complaints about Federal services
Telephone 1300 362 072
If unsure how to proceed, contact your local Community Legal Service.
There are services which provide advocacy for younger people with disabilities – check with Commonwealth Carelink. In South Australia contact Independent Advocacy SA Inc.
Telephone – (08) 8232 6200
This list is a starting point – there are many other services available – the local Church programs, programs run by the “not for profit” sector, community and neighbourhood houses, and other groups who obtain funding to provide a specialist service.
There is also a difficulty in locating the specific services in each State and in some cases, even Commonwealth services differ in the way they provide services from State to State – eg. CRS in South Australia is structured differently to the service offered in Qld.
I would like to acknowledge that this list includes some information which Margaret Sahhar has collated – in particular, the Victorian organizations.
Barbara Hopwood is a social worker and teacher who has experience in the fields of disability, rehabilitation and community development. Currently Barbara works in the aged care sector assisting older people, particularly carers, deal with the changes which inevitably arise as people age, including grief and loss issues and finding new directions for themselves. Barbara has a great interest in the welfare of adults and children who suffer from MPS and the families who care for them.
Stress is an everyday fact of life. You can't avoid it. Stress is any change that you must adapt to, ranging from the negative extreme of actual physical danger to the exhilaration of falling in love or achieving some long-desired success'. [Martha Davis, et. al 1995).
Like most other aspects of living, stress has its positives and negatives. Negative stress, if prolonged, can affect a person at all levels – mind, body, spirit - sometimes resulting in ill-health. How can the stress of caring be reduced and quality of life improved or enhanced? A key to stress reduction is understanding some of the sources (self-awareness) as well as the realisation that there one does have a choice..
We have explanatory pamphlets as well as booklets on each MPS syndrome. Below is a list of the booklets available and their cost (not including postage).
Articles by parents and doctors dealing with management, long term care and specific medical problems are also available. Photocopied information is available on topics such as anaesthetic complications, spinal problems and surgery. There are also articles written by family members on "life with MPS" as well as ideas to help with feeding, management and schooling etc.
The publication costs do not include photocopying or postage. Photocopying is charged at 20 cents per page and postage as incurred.
All articles, booklets and information are free to families with an affected member. Quarterly newsletters are published and distributed to members.
Please complete the attached Order Form and forward it with your cheque to the MPS Office.
|Title of Publication||Cost|
|The Patter of inheritance||$5.00|
|MPS I (Hurler Syndrome)||$5.00|
|MPS II (Hunter Syndrome)||$5.00|
|MPS III (Sanfilippo Syndrome)||$5.00|
|MPS IV (Morquio Syndrome)||$5.00|
|MPS VI (Maroteaux-Lamy Syndrome)||$5.00|
|Mucolipidosis II and III||$5.00|
|Is your child having anaesthetic?||$5.00|
|What to do when a child dies||$5.00|
Towards greater independence:
A Guide for adults with mild MPS