Politics: Federal Election – Meet the Carers’ Alliance

I have a soft spot for the next party, because it’s one of the reasons I started doing these posts many years ago, when my GeneticsJob asked me to do a brief run-down of all the parties’ policies on disability. In retrospect, they probably didn’t mean *all* the parties, but as you may have noticed, I don’t know when to stop. So let me introduce you to The Carers Alliance.

The Carers Alliance have two tickets in this election. They both start with the independents Steven Mayne and Paula Piccinini, who we haven’t met yet but who I think might be the anti-pokie machines people, and then the Democrats and Senator On-Line. Ticket 1 then goes Labor and ticket 2 goes Liberal – in other words, their preferences will be split 50/50 between the two parties. They don’t like the Liberal Democrats, the Secular Party, the CEC, or the other two Independents, Grant Beale and Glenn Shea, but again, they change the order between tickets.

The Carers Alliance is, not surprisingly, a one-issue party, started by people who are caring for family members with a disability. Their policies therefore fall into the areas Carers, Rights of Children, Education, Special Needs Health, Aged Care, Mental Health, Person-Centered Funding, and Veterans. I’m probably going to like this lot at least enough for a sympathy vote, though rumour among the support groups is that they are very disorganised, very loud and not very good at agreeing on anything. But these are the traits of a young, not very politicised political party, and hopefully things they will learn to curb for the sake of getting things done.

Here is their manifesto, found on the Carers page:

Carers Alliance as a key policy demands that the federal government fund a network for families who care. The very nature of unpaid family caring means family carers are too often housebound because of their caring role. These families have earned the right to be heard, and a right to develop friendships with families in a similar position.

Families deliver over 92% of all accommodation and support for people with care needs of all ages. Currently families who care are isolated, feeling alone and often desperate. This is a disaster for the mental health of the carer. Families who provide care have no forum in which to discuss their fears, their needs and the needs of the person they support.

The role of caring families in policy and planning is almost entirely absent because they have no funded grassroots voice.

We propose a Regional Disability Family Network as proposed below by the National Carers Coalition (an unfunded parent led group):

Each State and Territory to be provided with a recurrently funded regional service based upon the relevant Department of Human Services regional structure for all disability families caring for a person aged less than 65 years and will actively promote the rights of family carers and the rights of the people that carers support.

Sounds absolutely reasonable to me, and more power to them.

Under Rights of Children, the Carers want to make sure that all children “have a legislated right to age appropriate assessments that ensure their physical and emotional needs are met at all times.” They also want a child-centered approach to welfare policy and citizenship ‘recognised as a partnership between government and parents’

Furthermore, once an assessment identifies a child with additional needs, that child must be able to access immediate support such as early intervention services, aids, appliances, modifications, accommodations, technology and needs-based educational assistance to maximise their potential.

They want early intervention and assistance, both for the child and the family, so that any stresses are identified before they become breaking points. And they want access to equipment in a timely manner – children grow out of, for example, wheelchairs, much faster than government funding allows you to replace them, and much faster than funds come through even once they have been approved.

In Education, the Carers Alliance want choice in schooling, with equitable funding “irrespective of the educational setting with funding following the child to ensure flexibility and choice (including home schooling)”. They also want school curriculums to be designed around Universal Learning, which I can’t summarise well here, but is largely about a system of both architectural and course design that assumes diversity of approaches and abilities and caters to all. Here’s a little about it – you can read more on their website.

Universal Design for Learning is a natural extension of universal design for architecture and the built environment and universal product design. Some view inclusive learning as: presence (the where ) participation (quality of learning experience) and achievement (outcomes of learning).

Universal design for learning looks at 3 things too:

Representation (methods and materials -the what of learning where the content is not dumbed down but there is a variety of modes of presentation and access)

Expression (the how of learning – how the student can express understanding of the curricula, eg using electronic formats such as PowerPoint or verbal responses onto an MP3 device. I also see this as using a variety of methods to measure and assessing how a child has learned as well as what the student has learned)

Engagement (the why — which goes to motivation or why a child wants to learn and how to harness that spirit of inquiry into useful learning)

Universal learning design is already naturally practiced within formal childcare and pre-schools.

I’d add that I’ve heard of playgrounds designed like this, and they tend to be popular with kids of all abilities.

In the category ‘Special Needs Health’, the Carers Alliance points out that

It is important for primary care physicians to recognize that, in general, adults and older persons with an intellectual disability have the same needs for disease prevention, diagnosis, and treatment as the general population. Those who do need medical attention discover that Australia’s hospitals are ill equipped to deal with people with moderate and severe developmental disability with limited communication who are often unable to express pain and discomfort and often serious illness is left undiagnosed.

They therefore want specialist developmental disability clinics in major teaching hospitals, to provide educational and clinical practice supports for primary care physicians and specialty nurses caring for people with intellectual disabilities, along with travelling developmental specialists to visit regional areas on a regular basis. The Carers Alliance are also concerned to ensure that people with developmental disabilities receive the same array of lifespan preventative health practices as those offered to the general population – which would require medical practioners trained to respond to the often complex abilities of the patient

They also point to the high percentage of mental illness in people with developmental disabilities, and ‘will lobby for intensive mental health care to be provided within the public health system with stand alone wards that can offer physical protection and targeted services that assist, not only with responsive mental health outcomes but by providing ongoing support for community living.’

(yes, I know I’m just summarising and providing abstracts here, but I’m really not finding anything I disagree with, which isn’t that surprising)

In Aged Care, the Carers Alliance wants to support the elderly to stay at home if they want to, by providing person-centred funding for in-home services. They point out that often moving into an aged care facility leads to a loss of hope and a decline in mental and physical well-being, and that many people would prefer to stay at home with a bit of help.

They have an absolutely wonderful policy on person-centered funding, which they want to apply to aged care, mental health and disability generally. I’m going to quote extensively, I’m afraid, but it’s well worth reading:

Carers Alliance is determined to shift the model of services and supports for people living with disability from that of welfare to legislated rights and entitlements.

The consumer should always be at the heart of service provision.

Currently the block funded model sees recipients powerless and at the mercy of the funding body. The provider determines what services a person can have and when they can have them, allowing little autonomy.

Most people living with disability in Australia know where their best interests lie. It is not only reasonable but socially necessary to provide individually tailored services that fit into the lifestyle of the service user.

There is much evidence that state provided services often have little to do with the needs of the individual or the quality of services on offer, but the availability of supply – based on the funding submission and the ‘winning’ of specific contracts.

Not all people will want to self direct their own services but the choice should be available to all. Even those who do not want to self direct their own services should be provided with bank of money that they control so that the individual or their advocate (if a person cannot self direct without assistance) is able to move a person away from a provider if they find the provider is failing them.

Individualised service packages will allow voice, choice and control by:
1. providing the user of services with the choice of service type,
2. allowing portability of funding allowing choice of service provider or to pay for the care they choose to have in their own home
3. consumer controlled funding, if that is the choice of the person with disabilities or their families/nominated representative

In its simplest form, an individualised funding package is the provision of direct payments to people in order to purchase services they require, which is a transformative idea giving power to the service user. Payments can be made directly to the individual requiring support or an intermediary/broker who offers financial and/or case management. Alternatively, the individual can direct block funding to a chosen service provider who meets the needs of the individual.

This sounds pretty ideal to me; I don’t know how it would work, but it is definitely something we should try to find the funding for across the whole disability sector.

The Carers Alliance also want these packages available to people with mental illness, and want to allot 12% of all health funding to mental health services – and not just prevention.

While Carers Alliance welcomes preventative measures with the Headspace Centres, little thought and planning has gone into effective access to allied health services, accommodation services nor beds within the Area Health Services for those needing more intensive services and supports.

The consumer has the right to expect that hospital and community mental health services will be part of an integrated network to ensure continuity of care, but access to services is extremely restricted because of the lack of beds within the Area Health Services.

They also outline the rights of mental health patients and again, this is a policy worth reading in full (though like all their policies, there is a problem with their web design and you have to scroll way across to the right to read anything).

Finally, under ‘Veterans’, the Carers Alliance wants to acknowledge the effect on children of having a parent serve in the military – apparently there are intergenerational health impacts, and “that disability and mental health issues of sons and daughters of returned servicemen and women should fall under the veterans packages of both TPI and goldcard as the health impacts of veterans children are more likely a direct consequence of their parents military service”.

You know, there is not a single policy in this package that I don’t like. Carers Alliance are definitely going to make it into my top five parties. Yes, they are a one-policy party – but it’s a very good policy. And I think they deserve my support.

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