New research from Contact a Family reveals that (in England) families with disabled children are going without essentials and spiralling into debt, before the full impact of planned benefit cuts is felt. 

The charity's Counting the Costs 2012 survey of over 2,300 families shows that for those in jobs – 

• one in seven (14%) is missing meals 
• and one in six (17%) cannot afford to heat their homes.

And for families not in work due to their caring responsibilities – 

• almost a quarter (24%) is going without food 
• and a third (32%) without heating.

Welfare reforms create fear 

• 58% of all families fear their financial situation will worsen in the next year (up 15% since 2010). 
• The majority (73%) cited welfare reforms as the main reason for their fear.

Counting the Costs 2012 also found that:

• Almost a third (29%) have taken out loans - from loan sharks, quick cash schemes, banks or family and friends – to afford everyday essentials such as groceries and heating. Up 4% since 2010.
• 41% have fallen behind with payments for gas and electric bills, council tax, rent and mortgage. Up 7% since 2010.
• Over one in ten (11%) have already been affected by benefit changes, with the majority still left to bite.

Contact a Family has today launched a campaign 

- to raise awareness of the financial hardship for families with disabled children. The charity is urging affected families to write to their MP with the Counting the Costs 2012 findings as well as details of their own related experiences.

Get in touch -

Michele Cefai: This email address is being protected from spambots. You need JavaScript enabled to view it. 

Contact-a-Family: http://www.cafamily.org.uk/

Equipment-funding gap filled by charity. 

One of the most recent children to have benefitted from Newlife stepping in to fill the provision void is three-year-old Ivy Knight from Flitwick in Bedfordshire. Ivy received Newlife's 5,000th equipment grant and has been provided with a £3,600-specialist wheelchair buggy that statutory services refused to fund. 

Ivy has cerebral palsy, epilepsy, suffers from more than 20 seizures a day and, after a serious illness in January 2012, has chronic dystonia which causes involuntary movements. Ivy's recent deterioration means she may have a terminal form of the genetic illness Mitochondrial Disorder and so she desperately needed a specialist wheelchair buggy but statutory services wouldn't provide the only chair suitable for her posture. 

Dad Lee Knight said: "Four different professionals have said that Ivy needs this equipment but still statutory services refused to fund it. Those who manage the budgets are not aware of the complex requirements of the equipment needed so they allocate insufficient funds that can only purchase poor quality and inadequate items. Although the wheelchair that Ivy needs is more expensive than statutory services will agree to fund, it is a high quality product that can last her into her adulthood if needed. 

"Children like Ivy are suffering because their needs are never promptly met; lots of families we know have had to apply to a charity or raise personal funds to cover the costs of the equipment their child needs and this can be a lengthy process. Ivy has already suffered enough – she may have a terminal illness and so her time may be precious. When she is not using the right equipment she is uncomfortable and upset, so when people refuse to fund an item to improve Ivy's life they are stealing her quality time and in turn our time with our daughter – we've all suffered enough." 

The Knight family's story demonstrates the impact that issues around equipment provision are having on families. 'From the Front Line' reveals that 77 per cent of professionals who approached the charity did not approach local statutory services first. The charity believes this indicates that these dedicated professionals knew there was simply no point.  Instead, they are doing what is best for children by supporting applications to charities such as Newlife, who can deliver what the child really needs, when the state too often fails. 

Pictured: Ivy Knight

Visit Newlife here.

Based on our work with families, the NDTi and Dimensions identified a need to explore how families were being involved in the personalisation process. 

Conclusions include that: 

• Local statutory agencies should review how they are providing information to families about personalisation starting by asking about their information and process needs;
•  Local statutory agencies ensure that the people working with families have access to current and best practice information and have a commitment to working in family centered ways;
•  Information about personalisation needs to be more local and to reflect the experiences, circumstances and aspirations of more families.

Go to: 

Families and Personalisation

http://www.ndti.org.uk/uploads/files/Insights_Better_Lives_project_June12_final_19th_June.pdf

Families and Personalisation Project - Some thinking for local statutory agencies http://www.ndti.org.uk/uploads/files/Beter_Lives_project_article_June12_final_19th_June.pdf

Key Learning Outcomes Summary for Families, Local Authorities & Support Providers

http://www.ndti.org.uk/uploads/files/Better_Lives_project_-_outcomes_June12_final_19th_June.pdf