Getting the Most from Services for your Family

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.

Medical Care

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.

  • Remember it is your General Practitioner/family doctor who   knows you all
  • Think in terms of your “team” your gp, your medical specialist   and allied health team members who are all there to help you
  • Do ask for second opinions or other specialist   advice/assistance if you need it.

Your Support Team

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”! 

Services in Australia

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 –

  • There are many services; they are diverse and there are some overlaps
  • Services are able to respond to small groups of people with specific needs and can be flexible
  • Funding is available for small programs

 Disadvantages include –

  • Difficulty in locating the services which may be just right for you
  • There is no “one-stop-shop” for information
  • Services vary in scope and eligibility criteria

Commonwealth Services

Australia wide – include Centrelink, Commonwealth Carelink and the Commonwealth Rehabilitation Service.

State Based Services

Include genetic and disability services, local councils etc 

Services are Provided and Funded in Different Ways

  • Non-government services & organisations - Australia-wide, State specific or local - these   include Association of Genetic Support of Australasia (AGSA) and the MPS   Society
  • Local services – through councils, churches , Service Clubs, community-houses, volunteer   services
  • Informal networks – friends and family, co-operatives, etc.
  • Information dissemination – through internet

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. 

The Role of the MPS Society in Accessing Services

  • The MPS Society publishes the Linking Hand Newsletter
  • The MPS Society maintains a website with links to other organisations and services
  • The State family representatives have local information and experience and can direct you to people who can help
  • International and Australian specialist medical practitioners, researchers and other health professionals attend the MPS Conferences and are available to parents to   answer questions in an informal setting.  They are extremely helpful and have   knowledge you need.
  • Sharing information with your MPS family colleagues is so valuable … one of your best resources.

 New Zealand

  • Has the advantage of a National Government needs-based assessment and service co-ordination.
  • The assessment is holistic and is your entry card to community services.
  • There are other informal social services and and an education system which provides special education services.

How Do You Find The Most Appropriate Services For You?

 

 

Each family has different needs and the services need to ebb and flow over time …

  • It is important that you find a skilled person who can help you find the information you need to make personal choices.
  • This person could be a member of your primary health team, a genetic counsellor, a community social worker or community health worker.
  • A professional worker is more likely to have the expertise, time and energy to assist you access the services which you need.
  • The Disability Officer/Social Worker in your local Centrelink office has access to info in the local area. 
  • More importantly they can assess a family’s needs holistically and can advocate to other Centrelink services on your behalf.
  • If you are unhappy with a Centrelink decision, always appeal the decision to the Tribunal level.

MPS Family Experiences

 

 

 

Families advise the most valued service for their MPS child has been/is  

  • Respite care – allowed me to retain my sanity – service found through personal contact with another MPS parent.
  • The genetic counselling and co-ordinated medical care we received through the team in Melbourne.
  • Grant from State for respite services.  Only found after lots of persistent inquiries.
  • Social worker organising health care service to pay for nappies and the genetic/medical management through the hospital team.
  • Access to professional team members via internet.
  • Assistance to fund long term residential care through State grant. Accessed with help of Church and an MPS parent/advocate.

Your Own Family Support Person

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 … 

In Summary

  • Say “yes” to help from others
  • Gather a support team including a special person to advocate   for you.
  • Don’t wait for a crisis
  • Be persistent to find services you need.
  • Review your family’s needs regularly – be sure to consider   every family member
  • Stay connected with other families who have MPS children.
  • Actively seek out those who can help you.

 

 

 

 

SERVICES CHECKLIST

INFORMATION

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.

MEDICAL SERVICES

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.

INCOME AND FINANCIAL SUPPORT – CENTRELINK

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.

CASE MANAGEMENT

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.

ACCOMMODATION

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

EQUIPMENT

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 Programprovides subsidized aids through public hospitals

Technical Aid for the Disabled – in Gippsland, NSW, SA and WA

National Continence Helpline on 1800 330 066

RESIDENTIAL CARE FOR CHILDREN

Long term care for children with disabilities needs to be discussed with your medical team and referrals made to the appropriate State health department. 

RESPITE

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!

SUPPORT GROUPS/SERVICES

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.

RECREATION AND LEISURE

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.

DISCRIMINATION

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. 

ADVOCACY

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

Note:

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.

 

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