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

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!!!

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