Bill Moss AO
16th March 2021

The Hon Scott Morrison MP

Discrimination Against Individuals with Disabilities Based on Age

Dear Prime Minister,

I write to you today in two capacities: firstly, as the Founder and Patron of the FSHD Global Research Foundation, and secondly, as a sufferer of Facioscapulohumeral muscular dystrophy (FSHD) – a debilitating muscle wasting disability.

I have been a strong supporter of the National Disability Insurance Scheme (“NDIS”) since its inception. I was an original member of the Disability Investment Group (“DIG”) formed in 2008 by the Honourable Bill Shorten and Chaired by Ian Silk. DIG discussed the need to establish a Disability Insurance Scheme to cover all services needed by people living with a disability throughout Australia and, commissioned a research report by Price Waterhouse & Coopers (PwC) which included recommendations on possible models, the benefits offered, the cost of the schemes, and possible methods of funding the scheme. In many ways, DIG was the genesis of what is now the National Disability Insurance Scheme (“NDIS”).

I became a great supporter of the NDIS and took an active role in speaking publicly about the need for an efficient NDIS program to be implemented throughout Australia for the benefit of all Australians with disabilities and their families. One thing that has concerned me since that original PwC report and the NDIS legislation was the decision made to exclude people aged 65 and over from the NDIS program.

Disabilities occur in many different ways and vary greatly in their severity and age of onset. In many disabilities the symptoms may appear mild before the age of 65; however, major and rapid deterioration can occur after the age of 65. As a result, people suffering from disabilities may not register with the NDIS before the age of 65.

Why do people with progressive degenerative disabilities not register with government agencies (NDIS) before the age of 65?

• Global research undertaken by FSHD Global Research Foundation indicated that between 30%-60% of people with FSHD in Europe and USA did not register with the relevant agencies to participate in clinical trials, nor registered with the respective organisations to undertake new clinical testing technology for FSHD. The reasons given were they feared their personal information would not be confidential and secondly, they feared the risk of losing their employment, career and insurance cover if their disability had been registered.
• People believed rightly or wrongly that they did not need government support as they would be cared for by their family and / or spouse and they would be able to work part time to support their future needs. They also assumed their family support network would be around them until they died.
• People believed that their disability was manageable and would not progress rapidly and adversely affect them or their family’s lifestyle, some people with progressive degenerative disabilities block out the future and live in the present.
• People wrongly believed their net worth was sufficient to support their future disability requirements and assumed their financial position would not deteriorate in the future.

Having lived with a progressive muscular disability since birth, I established the FSHD Global Research Foundation (www.fshdglobal.org) in 2007. Some facts around FSHD are as follows:
• FSHD is genetic, you are born with it!
• It causes muscle wasting in the face (“facio”), in the shoulders (“scapulo”), and in the upper arms (“humeral”), sometimes spreading to the hips and legs. As it progresses, muscle weakness has an insidious effect on daily life. Simple, everyday tasks like eating, drinking, or rising from a chair become impossible. About 20% of FSHD patients become bound to a wheelchair. Less visible and therefore underestimated symptoms of FSHD are chronic pain and fatigue. Moreover, FSHD imposes a heavy emotional burden. Frustration, guilt, shame, grief, and social isolation are often reported. Perhaps most importantly, there is uncertainty about the future because the course of FSHD is unpredictable. There is no approved therapy.
• Progression of this disease is not linear. In some cases, you can experience a rapid onset of the disease which usually is caused by several factors including marital stress, depression, anxiety, a weakened immune system, loss of employment and accidental falls. The rate of progression can accelerate rapidly at any age, even after the age of 65.
• Infantile FSHD progresses at a rate that will put young children in wheelchairs and can lead to an early death.
• One-off events such as the fear of COVID19, prolonged lock ups and the related stress on families, mental health, financial stress and uncertainty of employment can lead to a rapid progression.

In my own case I noticed a major accelerated onset of FSHD over the last 12 months.

The question I would like the Federal Government to consider is:
Why people born with a genetic defect that leads to long term deterioration of the body (in some cases requiring high needs care) over the age of 65 not eligible to join the NDIS program, and access the same benefits provided by the Australian taxpayers which are available to those that registered to join NDIS before the age of 65?

Upon reaching the age of 65 you are no longer entitled to join the NDIS; however, you may apply to join the Federal Government’s My Aged Care program. When you examine the level of services available with the NDIS as compared with My Aged Care, the differences are very alarming, particularly with regards to the range of services available, and the maximum funding support limits which directly affect the person’s quality of life.

For example, an individual over 65 years of age requiring specialist high needs disability care will be forced to make a decision:
• Leave their family home against their will and enter a Government funded facility which may not be able to provide the specialist high needs disability care they require, or
• Stay in their family home utilising the care and support of their family and receive limited financial support from the My Aged Care system which will be inadequate to receive an appropriate support and quality of life.

This is a major problem for the health care system for Australians over 65 years of age. My Aged Care has not been designed for people requiring the same level of specialist disability care and services that can be funded under the NDIS.

I ask the Prime Minister to:
1. Undertake a review to compare the current funding caps, benefits and services available between the NDIS, My Aged Care programs, and Government funded homes for people with special need disabilities over the age of 65.
2. Remove the current age cap of under 65 years on joining NDIS to allow all people, regardless of age with disabilities to be part of the NDIS system.
3. Allow people over 65 years of age with disabilities currently under My Aged Care program to transfer to NDIS immediately to enable them to live at home with appropriate care required.
4. Promise that all Australians with special needs disabilities be provided with access to the same services and level of funding regardless of age and whether they live in their family home or in a Government funded home.

I call upon the Government to discuss the matters outlined above as a priority, ignore the additional financial cost of the findings, and stop the discrimination against individuals with disabilities over the age of 65.

Yours faithfully
Bill Moss AO

ALLOCATION OF TAXABLE DEDUCTIONS

Inception – 2020: As of 30th June

$11,353,283 Total Tax Deductible Donations

A 100% MODEL

The FSHD Global Research Foundation is a pure Australian not-for-profit organisation investing 100% of all tax deductible donations funding both basic epigenetics and therapeutic clinical trials, establishing drug developments to prevent muscle wasting. With a global footprint on science, our award winning structure relies on non tax deductible revenue and sponsorship to support all overhead expenses.

Traditionally, 100% of all cash tax deductible donations are allocated to current or future medical research investment, grants and educations. The Foundations operating expenses are covered by other non-tax deductible fundraising activities such as sponsorship, events, campaigns and auctions. As a result of COVID-19 and the cancellation of the 2020 Sydney Chocolate Ball, our operating model for the 2020 financial year sits at 90%.