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disability

Disability

Which country expects a child to wait more than 2 years for a wheelchair?

by Bronwyn Orsatti
written by Bronwyn Orsatti
Wheelchair on a blank background


Answer: Australia – And we still call ourselves the ‘lucky country’. Yes lucky if you are not touched by disbaility. Otherwise you are regulated by government, the health services industry and health insurance as second class citizens.

The National Disability Insurance Scheme will change all of this and provide people with a disability with the equipment, therapy and support they need. It will revolutionise the way people with a disability, their families and carers are supported in Australia.  The NDIS will be a modern, person-centred support system, helping hundreds of thousands of Australians with disability and their families to have the opportunity to participate actively in their communities by providing targeted supports aligned to need.

The NDIS was devised and recommended by the Productivity Commission in July 2011, following an intensive 18-month investigation of the unmet needs of people with disability and their families and carers across Australia, and analysis of high-functioning disability support systems overseas.

But to Make the NDIS Real for every Australian, your support counts. Please get involved … How??

 
 
 
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Disability

Navigating the Funding Maze – Family Assistance Fund – NSW

by Bronwyn Orsatti
written by Bronwyn Orsatti
Autistic boy getting assistance at computer

Welcome to the eighth  installment of ‘Navigating the Funding Maze‘. Today I hope to give alittle more insight into the Family Assistance Fund (NSW). I hope that this will be useful information.

This is one that I have not yet used myself but I do hope to use it in the very near future. I remember when we first started talking to our case worker from ADHC about them getting us an appointment with an OT and getting a trampoline or something similar but nothing came of it.

I am going to try and find out if there is anything similar for the other states … if you know anything please either put a comment or send me a email.

What is the Family Assistance Fund (NSW)?

The Family Assistance Fund was established to help families with ongoing care for their child with a disability.

The Family Assistance Fund provides small amounts of one-off funding (up to $2,000) for families to purchase services and equipment to help them care for their child with a disability at home and increase family well-being.

Funding can be used to make practical changes at home, provide support for individual family members that is otherwise unavailable, and purchase non-recurrent assistive equipment. The funding helps families to address specific needs and stresses before they become a crisis and to make a difference in the care of the child or young person with a disability.

Who is eligible?

Eligible families are those who are caring for a child or young person with a disability under 18 years of age and who are receiving case management from Family and Community Services – Aging Disability and Homecare (otherwise known as ADHC and previsouly known as DADHC) or an ADHC-funded service provider.

Priority will be given to:

  • families on low to moderate incomes (in 2006 $62,647 or less per annum);
  • families where the child or young person has multiple or complex medical and behavioural needs and/or where parents have health or other issues that impact on their parenting role or capacity to manage behaviours, routines and stresses;
  • families where the care of the child or young person with a disability is having a
  • significant impact on the well-being of their siblings;
  • families with little or no access to extended family support or local support within
  • their communities;
  • families living in geographically isolated areas; and
  • families who have not received Family Assistance Funding previously.

Boy at computer getting assitance

Being eligible does not automatically mean that you will receive funding. The number of families able to be helped is dependent on funding availability and level of need.

What can be funded?

Examples of how Family Assistance funding can be used include:

  • purchase of assistive equipment to help families care;
  • resources to promote play activities and interaction between children/young people in the family and/or their parents;
  • recreation activities for both the child with a disability and other children in the family (e.g. a total family outing, assistance to attend holiday activities);
  • new resources to support the child or young person through transition stages and to help families manage care changes;
  • services to increase parenting skills, communication and improve family routines in the longer term;
  • training to improve caring skills;
  • counselling or other forms of personal support for family members, including siblings;
  • equipment/support to assist the child or family’s community involvement and the development of personal support/peer networks;
  • modifications to the house and garden to provide a safe, secure environment, or a car modification for transportation; and
  • household equipment such as a washing machine or clothes dryer to assist with laundry for children with incontinence or a heater to prevent medical problems for a child with complex health care need

What is excluded?

Funding is provided strictly on a one-off or time-limited basis. The Family Assistance Fund
will not provide funding to:

  • purchase any item or support that has ongoing, long term or recurrent costs;
  • duplicate existing services or funding;
  • fund shortfalls in existing services;
  • act as bridging funding while awaiting longer-term care options;
  • where the support service(s) or aids requested are available through other NSW or Australian Government programs;
  • provide clinical assessment or therapy services;
  • provide out-of-home placements and respite; nor
  • purchase basic items such as food and clothing

How can you apply for funding?

Families need to fill in and sign an Application Form. The Form includes a budget section where details of at least one written quote for the equipment or services to be funded needs to be added. Your case manager (or other DADHC worker) will provide advice and assistance in filling in the form and you will need to make sure they complete the checklist at the back of the form.

Additional application forms are available through the ADHC website (www.dadhc.nsw.gov.au), your case manager (or other ADHC worker). You can put in an application at any time.

A regional panel will consider applications regularly and make recommendations to the Regional Director or a delegated officer. The panel will include a DADHC officer, a government or non-government service and a person with a disability and/or a family member who is not seeking funding.

If approved, applicants will receive:

  • notification of approval;
  • a cheque for the amount of funding allocated; and
  • information about how to account for spent funds.

To find out more about the Family Assistance Fund ask your case manager or contact
your DADHC Regional/Area Office:

  • Metro North Region – (02) 8855 4200
  • Metro South Region – (02) 9334 3700
  • Western Region – 1300 134 450
  • Northern Region – 1300 364 563
  • Hunter Region – (02) 4908 5229
  • Southern Region – Illawarra (02) 4254 0319 or  Southern Highlands (02) 6200 730

What have your experience been of the Family Assistance Fund? Do you have any lessons/scars? 

Please feel free to add links to more relevant information you have found useful in the comments below.  

Photo by Jordan Whitt on Unsplash

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Disability

NDIS on the cards? – Productivity Commission Report into Disability Care and Support

by Bronwyn Orsatti
written by Bronwyn Orsatti

Today the Productivity Commission has released its final report into Disability Care and Support. As the final report has only just been released I have not yet had time to read all of the detail but I am sure to be writing more about this in the future.

From what I can gather so far the main points from the Productivity Commission are

  • The current disability support system is underfunded, unfair, fragmented, and inefficient, and gives people with a disability little choice and no certainty of access to appropriate supports. The stresses on the system are growing, with rising costs for all governments
  • There should be a new national scheme — the National Disability Insurance Scheme (NDIS) — that provides insurance cover for all Australians in the event of significant disability. Funding of the scheme should be a core function of government (just like Medicare).
  • The scheme should involve a common set of eligibility criteria, entitlements to individually tailored supports based on the same assessment process, certainty of funding based on need, genuine choice over how their needs were met (including choice of provider) and portability of entitlements across borders. There would be local area coordinators and disability support organisations to provide grass roots support. The insurance scheme would take a long-term view and have a strong incentive to fund cost effective early interventions, and collect data to monitor outcomes and ensure efficiency.
  • The above features would be best met by a having a single agency overseeing the NDIS — the National Disability Insurance Agency. It would be created by, and report to, all Australian governments. It would have strong governance arrangements, with an independent commercial board, an advisory council of key stakeholders, clear guidelines to ensure a sustainable and efficient scheme, and legislation that protected the scheme from political influences.
  • It would be the assessor and funder, but not the provider of care and support. Services would be provided by non-government organisations, disability service organisations, state and territory disability service providers, individuals and mainstream businesses. Increased funding, choice and certainty are the key features of the recommended scheme. Advocacy would be funded outside the scheme.

The governments response … well weak at best. From what I can understand from the press conference there was a commitment in principle to the NDIS and the allocation of $10 million into working with the states on creating the foundations for the development of the scheme. Seriously what does that mean!!!! I know I need to wait to see a formal release but all I heard from Julia Gillard, Jenny Macklin and Bill Shorten was ….. NDIS good idea … we know people with disabilities and their carers are doing it tough … spin spin spin … we promise to talk about it and that is why we are giving $10million to do … productivity commission report talks about 7 years implementation but we aren’t going to commit to anything … spin spin spin … and therefore in the meantime you have to continue to fund and somehow manage the care for your son because the system is and will be for a long time “underfunded, unfair, fragmented, and inefficient, and gives people with a disability little choice and no certainty of access to appropriate supports”. ARRGGHHH!!!!!!

I am just tied of hearing mañana, mañana, mañana (tomorrow, tomorrow, tomorrow) for something I don’t even know for sure is going to be of any help at all.

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Disability

PBS and the world’s most expensive drugs

by Bronwyn Orsatti
written by Bronwyn Orsatti

As I have said before … within the Health budget there are alot of tough decisions that need to be made. Everyone can not be helped.It is a really sad fact but the Health budget is not unlimited and there are those that get funding and those that don’t. And in my opinion it is simple … if you get funding you are a priority and if you don’t … well your not. What is obvious though is that if your problem can be treated by doctors, drugs and hospitals you have a much better chance of getting funding … no matter how much it costs. Some of the most expensive drugs in the world are provided at for nothing to people under a program called the Life-Saving Drugs Program. And while I have tremendous sympathy for those that suffer from medical conditions, especially rare and complicated medical conditions, however the question has to be asked … is this fair? Why should treatment of conditions with very expensive drugs take priority over other conditions in receiving funding?

What is the Life-Saving Drugs Program?

The Life Saving Drugs Program (LSDP) provides free access for eligible patients to expensive drugs for serious medical conditions. Drugs included on the LSDP have been shown to be effective in extending the lifespan of patients suffering from life-threatening diseases. There are no other suitable, cost-effective therapies or drugs available through the Pharmaceutical Benefits Scheme (PBS) for the conditions treated under the LSDP.

So while these drugs can improve the quality of life and possibly extend the lifespan but they not cures.The big difference these drugs bring is in quality of life.

How much do some of these drugs cost?

Disease: Paroxysmal Nocturnal Haemoglobinuria (PNH)
Name: Soliris® (eculizumab)
Cost of drug per patient per year: more than $500,000
Potential outcomes with Treatment: Soliris® (eculizumab) will significantly improve quality of life for patients who suffer from it, and possibly extend the lifespan

Disease: Hunter Syndrome
Name: Elaprase® (idursulfase)
Cost of drug per patient per year: up to $500,000
Prognosis if treatment not received: If left untreated, Hunter Syndrome leads to a very poor quality of life and early death.
Potential outcomes with Treatment: Elaprase® (idursulfase-rhu) will significantly improve quality of life for patients who suffer from it, and possibly extend the lifespan

Disease: Maroteaux-Lamy syndrome
Name: Naglazyme® (galsulfase)
Cost of drug per patient per year: up to $500,000
Prognosis if treatment not received: .
Potential outcomes with Treatment: Naglazyme® (galsulfase) will significantly improve quality of life for patients who suffer from it, and possibly extend the lifespan

Compare with Autism

Condition: Autism
Therapy and Supports: Therapy based including Psychology, Speech Therapy and Occupational Therapy and Supports to enabled Autistic Children to access the community
Cost of therapy and supports per person per year: up to $60,000
Potential outcomes with Treatment: Therapy can significantly improve quality of life Autistic People.

For every person treated under the Life Saving Drugs program how many Autistic children could receive therapy per year

  • Soliris® – At least 8 people
  • Elaprase® – Up to 8 people
  • Naglazyme® – Up to 8 people

This is a cruel question … but is this fair? Personally I would like to see everyone helped but the Australian government can’t afford it.  So is it far that up to 8 other people potentially miss out on therapy and supports because 1 person receives a very expensive drug. Is it fair that the potentially 8 other people face a life of institutionalization to improve the quality of life  for 1 person?

I know that this is going to be controversial but what do you think? IMHO these are just the normal questions that have to be asked within the Health Portfolio. So, if you were Health Minister what would you do? Who would you help? Who is your priority?

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