75% of disabled people and their families have no long term support plan

Sense deliver their petition to 10 Downing Street. Left to right – Head of Policy Sarah White, CEO Richard Kramer, Parent Inge Ahmad, daughter Noreen Ahmad and staff from Sense charity shops, Carolyn Gee, Pauline Moules- Over two thirds (67%) of families caring for disabled adults with complex needs live in fear of what will happen to their loved one when they are no longer able to provide support; and 3 in 4 (75%) family carers say they have no long-term plan for what will happen when they can no longer provide support to their loved one, according to Sense

National disability charity, Sense, delivered its #HelpFamiliesPlan petition to Number 10 Downing Street. More than 35,000 people have joined Sense in calling on it to become compulsory that councils ensure disabled people aged 25 and over are supported to have a plan in place for their future care and support.

Sense have been campaigning on national and local government to provide better long-term support for disabled people and families, following the Sense ‘When I’m Gone’ report that revealed over two thirds (67%) of families caring for disabled adults with complex disabilities live in fear of what will happen to their loved one when they are no longer able to provide support; and three in four (75%) families caring for a loved one with complex disabilities have no long-term plan in place for when they are no longer able to provide support.

Freedom of Information data, also included in the report, highlighted that only 1 in 4 councils are able to support disabled people and their carers to make contingency plans for future care options; and 1 in 3 local authorities are aware of how many disabled adults are currently being cared for by family and friends at home, in their area.

Sense is also calling upon government to ensure social care is adequately funded to meet the growing needs of families and disabled adults.
Sense Chief Executive, Richard Kramer, said:

“Over 35,000 people have already signed the petition and we’re receiving more signatures every day. It shows what an incredibly important issue this is and that the public are concerned that family carers and their sons and daughters feel left out and neglected.”

“We hope government will take action, investing in social care to combat the care crisis and that together we start to tackle the pressures families face when planning for future care needs. It’s time that disabled adults and their families receive the right support at the right time and in the most appropriate setting.”

Inge Ahmad (68), from North London, shared her experiences as part of the report and came along to deliver the petition to Downing Street. She cares full-time for her daughter, Noreen (35), who has learning disabilities, is quadriplegic, blind, epileptic and without speech. She receives four hours respite care a week from the local authority.

Inge Ahmad said:

“Noreen is delightful, but requires full-time support. I feel under constant pressure. I really worry about what will happen to Noreen if I can no longer take care of her. I don’t think that the local authority has many options, and the decision would be based on ‘where there’s a bed available’, rather than the appropriateness of the care. If she’s not happy where she is and with the people who look after her, she will refuse medication, food and drink. She’ll become incredibly unhappy.

“It is wonderful that Sense was prepared to run a story regarding my most anxious issue pertaining my daughter, which was called “When I’m gone”. I am most grateful Sense then continued addressing this issue with a petition which seemed to show that this is a great concern for many, many people. I would like to thank all those who kindly signed this petition.

Noreen and I are very happy to have helped take the box with the petition signatures to 10 Downing Street. There is hoping this will raise the issue further and that it will bring positive results.”

Find out more about the campaign: www.sense.org.uk/whenimgone


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