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Tag:

isolation

Disability

Forgotten People – Forgotten Families – The impact of isolation on families with disabled children

by bronwyn March 11, 2012
written by bronwyn

Today I found a interesting survey completed in from a UK support and advocacy charity called Contact a Family called Forgotten Familes. According to their research families in the UK with disabled children felt excluded from society due to a shortage of services and negative attitudes. Sounds familiar …

Key Findings

Families with disabled children have the same hopes and dreams as other families. They want to see their children reach their full potential and enjoy time together as a family. However, families with disabled children face an overwhelming combination of financial, emotional and practical pressures and, without information and support, find it difficult to cope and become isolated. Disabled children are less likely to succeed at school, their siblings often get less time and attention and many parents feel that their own needs as carers are often forgotten.

Families with disabled children experience isolation in different ways:

  • a lack of social interaction due to difficulties working
  • not having the time or money to do family activities others take for granted;
  • a fear of how people will react when they go out with their child
  • a feeling of being alone, even when they are surrounded by people, because no one else shares their experience.

The results of our survey show that isolation is having a devastating impact on the mental health of many families with disabled children. It is also causing family breakdown and restricting access to employment opportunities.

These are things that I think are not unique to families with disabilities in the UK … and in Australia due to the reduced services for people with disabiities and their families I think that the situation is worse.


So what should be done?

Lots … and I know that the answer from any politician would be … wait for the NDIS. It is going to be brillant an a whole new world. My answer to that is that you are talking about a system that has not been defined on what exactly what it will cover and for who … who will pay for it … how it will be delievered and all of this won’t be happening until at least 2018. Do people with other serious health concerns have to wait until 2018 to get funding for therapy … NO. So why should we.

(I have taken from the reports findings and edited them to included many of my own … to read their findings read the report here)

To reduce financial isolation I am calling on the government to address reforms about the ongoing financial costs faced by all families with disabled children and make employment a realistic  option.

I would therefore like to see a commitment to:

  • cover all direct therapy costs under Medicare (with no caps or limits)
  • require coverage from Health Insurance to cover any ‘gaps’ in funding between Medicare coverage and actual cost (with no caps or limits)
    • Mental health including behavioral health treatment
    • Pediatric services, including oral and vision care
    • Preventive and wellness services and chronic disease management
    • Rehabilitative and habilitative services and devices
  • recognizing the higher costs of childcare and schooling for disabled children by covering at least 90 per cent of childcare and schooling costs for disabled children with an aspiration to increase this to 100 per cent as the economy improves

To reduce the social isolation caused by a lack of support services across health, social care and education, I would like to see a single assessment process and plan that includes:

  • a distinct carers’ assessment that considers a parent’s ability to provide and continue to provide care for their disabled child or children
  • whether the parent works or wishes to work, or is undertaking, or wishes to undertake, education, training or any leisure activities
  • the provision of services to meet any assessed needs
  •  an obligation on all frontline professionals such as GPs, teachers and health visitors to identify and effectively signpost all parent carers to sources of financial, social and emotional information, advice and support
  • access to specialist parenting support for all families with disabled children that will help them to deal with the impact of their children’s disability on family life, take control and plan for the future.

To reduce the physical and emotional isolation associated with the stigma and discrimination faced by many families with disabled children, I am calling for:

  • all early childcare childcare, play and leisure services to offer disability awareness training to all their staff
  • all public authorities such as the Police, schools and universities to improve procedures and understanding of disability, in order to better identify those at risk of disability-related harassment and bullying
  • all government and health bodies to urgently review the extent to which current service are capable of being delivered by  local specialist and disability services and how any shortfall impact on a the welfare of the child, parent carer’s ability to have a life beyond their caring responsibilities and enable disabled children to fully participate in society, such as opportunities to make friends and have fun
  • parent-led training for all frontline professionals such as health visitors, GPs, and teachers to understand the impact of caring and disability on family life, so they can recognise and respond to signs of isolation, mental ill health and family stress
  • employers to promote carer and disability-friendly workplaces and practices, such as advertising posts as being suitable for those with caring responsibilities and offering flexible working arrangements from the first day of employment
  • the media and those in the public eye to challenge negative attitudes and practices towards disabled people and champion the contribution parent carers make to society.

Why should people with disabilities and their families be second class citizens in our communities … lost and forgotten … Action is need in 2012!!!

Image 99Club

March 11, 2012 2 comments
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Disability

Isolated and Alone … in a Crowd

by bronwyn August 6, 2011
written by bronwyn
Woman crying alone

Isn’t the weather in Sydney at the moment glorious. It is like the weather has forgotten for a few days that it is winter and given us a small preview of spring. While I do enjoy the colder weather … I can’t also help but enjoy these bright sunny days when the temperature and humidity is not too high and you feel the warmth of the sun on your face whenever you are outside. Beautiful weather …

Well yesterday I took advantage of it with the kids after we had finished therapy at Lizard. We had alittle extra time because LittleMan’s speech session had been cancelled (his therapy is enjoying a well earned holiday). So after therapy we went for lunch and then on the way home we stopped at a park.

We got there in the mid afternoon and there was a sizable group of parents there for a week-day afternoon. Lots of SAHMs with their kids, mainly huddled in groups around on the outside rim of the main play area, chatting as the kids ran around having fun. All I wanted was the kids to have some time to run around and play … just like all of the other children. Without requests or demands being placed on them … or  targets or drills being required of of them. Just play for the sole purpose of having fun and relaxing. To run around and enjoy the beautiful weather … and I guess just be alittle bit normal (as much as we can be).  However this was not to be.

It is not that LittleMan was doing anything wrong … he was just being himself and part of that is that he was displaying some of his autistic traits. He wasn’t stimming … he was running around all over and most obviously he was not conforming to general norms of the playground including not speaking. Other kids would talk to him and he would just look at them .. or maybe not at all. He wouldn’t comply with their requests and yes he wouldn’t necessarily play with the equipment in the same way as others. It wasn’t wrong … just different. He was just not conforming to the unwritten rules of the playground. The ones that aren’t taught but you are just required to pick up. The ones that kids with ASD just have so much trouble with. The other kids did stare … and ask their parents about the “strange kid” … the parents did stare …. and from their faces and the words spoken I could see them passing judgement on both him and me … the rude little boy and his disheveled mother. Yesterday I didn’t want to explain myself … I didn’t want to say “I’m am sorry … He has autism”. Why should I? I was tired of explaining myself and him to strangers. I was just tired and wanted a small piece of normalcy if only for a few minutes. And so … in that large group of people I just felt so isolated and alone.

We didn’t stay for long. I let them have some time in the park and brought them home for a play in the backyard. I know I shouldn’t … and it probably says more about me than them but … sometimes I just get so annoyed and frustrated by “typical parents”.

What do you think? Should I have used this as an oportunity to educate … or apologize and explain  his behaviour to them … Or should people be more tolerate of others with difference without requiring explanation … or should I have jumped into therapist mode  … or should I just harden up?

I just find sometimes that working within a world that does not support neurodiversity as really hard but I know that what is hard for me is alot harder for my kids. 

Photo 99Club

August 6, 2011 3 comments
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