or unclear. This barrier alone can be enough to cause procrastination on the topic and can lead to another barrier - role reversal. Information regarding the process and options for futures planning can be sporadic and sometimes quite frankly false. Two places to approach to receive up to date and unbiased information can be disability advocacy services or providers who provide support to people independent of their families. They can be great sources of information and can assist to ensure that the correct information is available. It needs to be noted that patience is required as this planning process can take considerable time, as there are many variables that need to be considered. The person with special needs may previously and or currently required support in more complex tasks or roles, but as the years pass a role reversal can creep up on carers. As carers age they may become less physically able for to undertake even just the basic activities of daily living, they may find themselves reliant on the loved one with special needs for physical assistance and thus creating a symbiotic relationship where the carer and individual need each other to accomplish daily tasks. This also creates a barrier, as now neither person is able to secure their future due to the entanglement of the relationship and roles that now exist. If steps are taken to future proof care for the person with special needs this might leave the carer unable to meet their daily living needs, effectively doubling the issues. The need for routine and continuous care for some people with special needs has made the prospect of personal funded arrangement untenable for most people in this country. The costs associated with providing long term care for a person with special needs are considerable and automatically rules out privately funded arrangements in most cases. Carers may feel pressured to sell their possessions in order to accommodate these costs leaving them without assets for their own future security.
Carers may not have expected their loved one to outlive them, with the constant advancement of medical science, new medications and assistive technology; the prospect of their loved one requiring futures planning may not have been considered. Carers may also have had misconceptions or expectations of their support network or government simply must assist when called upon. Carers can feel that ‘rules of the family’ insist that the family take over the caring role and thrust this expectation onto extended family which may be unviable. The carer and family may have similar expectations that the Government or community agencies are already aware of the situation, when in fact, if families have had little contact with these agencies, they may not. Managing expectations can be challenging, topics regarding futures planning may have been discussed previously and considerable changes have occurred in this time. The suggestions are to remain open and double check expectations are meeting reality. If extended family has previously suggested they would assist with futures planning, have follow up meetings or conversations to ensure that this offer remains current – often peoples circumstances change over time. Provide as much information as possible to extended families so that they are making an informed decision. It is never in the best interest of the person to be moved from one arrangement to another. Be prepared to bring a mediator or support person to any meetings with providers, government or even extended family members to ensure that conversations stay on topic.
Author: Mr Shane Ferguson, General Manager Disability Services
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