Dear Laurance,
You asked
Hi Felicity
>
> Thanks so much for taking the time to answer so thoughtfully. I have no
> problem with any of the ideas you describe. What was going through my head
> at the time I wrote was that it seems not OK to say that raising children
> with disabilities is in any way arduous, difficult or even undesirable. I
> wondered whether you have ever felt silenced regarding your own personal
> experiences as a carer within this group? Are the difficulties of 'caring'
> for people with a disability of any interest to people with disability?
Have I felt silenced? Yes I have but not only in this group. It seems to stem from societal expectations of a woman's role and motherhood whereby you are expected to sublimate your identity as an individual to perform to society's expectation of gender roles. There have been responses on this list from people who are paid to do the work society expects me to do for love and their opinions are valued and respected. In the International Year of the Volunteer foster carers have been lauded and applauded for the wonderful "volunteer" work they do. In both cases paid support workers and foster parents are allowed to identify the difficulties they face and vocalise the challenging and exacting tasks of their roles. In the case of paid support workers their care role is time limited and they are protected by Industrial Awards. In the case of foster parents whilst their role may come close to mirroring that of a natural family in the time they spend in caring, in this State foster carers are paid a tax free income for each child in care. This income is not means or assets tested - They and their partner could be millionaires and still receive this income. When they take on the role of foster carer included in the benefits they receive are guaranteed supports for each individual in care and guaranteed regular respite for the foster carer. Foster carers do not have to go on waiting lists in order to battle for supports, they do not have to find the money to pay for equipment or aids, - these are supplied-they are paid mileage for any transport costs, and medical bills for the person in care are met by government. Each of the individuals in care is expected to pay board to the foster carer as well. They do not have to give up careers as the supports are in place for the person they care for. Both paid support workers and foster carers have choices that families do not. They can choose to take on a carer role and they can choose to walk away if it all gets too much. In South Australia Foster carers were up in arms at the fact they once the child in their care turned 16 they would not be paid and all supports would be withdrawn. The result was when faced with supporting a child with a disability on equal terms with natural families they relinquished care back to government. It is my understanding that the government in SA now pays a salary in the vicinity of $35,000 per year, plus all the above identified supports, for fosters carers to care for adults with a disability.
Parents are also viewed by many people with a disability as over protective of their offspring and that this over protectiveness limits opportunities for a person with a disability to be independent or maximise their potential. As with all generalisations this aint necessarily so.
You also asked 'are the difficulties of caring for people with a disability of any interest to people with a disability?'
Guess that depends on which people with a disability you ask. Should it be of interest to all people with a disability? The answer is yes. In identifying the difficulties and oppression I live with I am also identifying the inequities and oppression my daughter and son live daily. Should it be of interest to this list? Yes. Why? Because the majority of people with disabilities who are cared for under similar circumstances as I have described are people with severe or profound disabilities, multiple disabilities, intellectual disability,cognitive disability or challenging behaviours. They are for the most part relegated to the "too hard" basket by service providers who want quick results and easy options. They cannot/will not cater to their needs. They are people whose independence is dependent upon adequate and appropriate individual supports being made available to meet their needs for support. They are probably never going to be able to enter the paid workforce and their community socialisation will always need to be facilitated by another. They are extremely vulnerable, invisible and cannot speak out for themselves. They are in the minority in the disability numbers game.
It should be of concern to disability scholars that families of people with a disability are being consigned to a life of welfare dependency as a result of economic rationalist policies of governments - families are the most cost effective means of providing care in the community. It should be of concern to disability scholars that it is only when the family is in crisis or relinquishes care of their family member with a disability that supports for the person with a disability are made available. It should be of concern to disability scholars that it was the lack of supports to families caring for sons and daughters with disabilities that saw the proliferation of institutions. It should be of concern to disability scholars that here in Australia the number of Carer Pensions attached to a Disability Support Pension doubled in a four year period - 10,631 in 1995 to over 21,000 in 1999. Is this indicative of the lack of supports available to people with a disability? It should be of concern to disability scholars that the divorce rate in families of people with a disability is four times higher than the national average. It should be of concern to disability scholars that the vast majority of single parents caring for a son or daughter with a disability are women. The resultant effects of family dysfunction on the person with a disability and their siblings (drug and alcohol abuse, withdrawal from the family, over developed sense of responsibility for sibling) should be of concern to disability scholars. Most of all it should be of concern to disability scholars that the family home in the community is becoming the replacement institution complete with all the life opportunity limitations, isolation and oppression identified as so undesirable in large institutions, differing only in that this time round families are institutionalised too.
Felicity
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