Chronically Sick and Disabled Persons Act 1970: 40th Anniversary

Baroness Gale Excerpts

Thursday 17th June 2010 Lords Chamber

[Baroness Gale]

My Lords, I thank my noble friend Lord Corbett for securing this important debate today and for his wonderful opening speech. I congratulate my noble friend Lord Morris of Manchester; it was a privilege to listen to his great speech and I thank him for it. I also thank him for his dedication to the promotion of rights for disabled people throughout his parliamentary career. It is thanks to his pioneering work that those with long-term illnesses have entitlements such as assistance in their own home, equal access to public facilities and even parking permits. The 1970 Act was groundbreaking and changed people’s lives. It placed new obligations on local authorities and helped to transform the way in which the state and society treated some of their most vulnerable people.

I declare an interest as chair of the All-Party Group on Parkinson’s Disease and as a member of the charity Parkinson’s UK. One in eight people in the United Kingdom is affected by Parkinson’s, which is a complex, long-term, degenerative condition and for which there is no known cure. Those affected rely on high-quality health and social care, as well as the right to financial support. With the right care their symptoms can be better managed, their quality of life improved and they can be supported to make an economic contribution to society.

As this is Carers Week, I take this opportunity to pay tribute to the 6 million people who perform the vital task of caring for others. Part of the legacy of my noble friend Lord Morris is recognition of the invaluable role of carers, but now more needs to be done. The All-Party Group on Parkinson’s carried out an inquiry, which I chaired, into access to health and social care services for people with Parkinson’s and their carers. Its findings were published last year and I would like to inform your Lordships’ House of what we found in regard to the role of carers. The report stated:

“Many carers said they were not getting the respite care they needed due to funding restrictions in many areas”.

Denise Maule, a carer providing round-the-clock care for her husband who has Parkinson’s disease and dementia, described in oral evidence to the inquiry how she had eventually managed to access a short period of respite care support after reaching breaking point. However, soon after this period of respite, she was informed by social services that she was no longer eligible despite her need being ongoing. Another carer said:

“It is difficult to put into words the feeling of abandonment and loneliness I feel. Carers have enough to cope with without the constant battle to get some attention for their loved ones”.

Research by Parkinson’s UK has shown that more than half of carers had been caring for five years or more. This is not surprising given that Parkinson’s is a long-term condition. More than half of carers reported that their health had got worse as a result of caring. More than a quarter of carers were worse off financially since becoming a carer. Just under half of carers were not receiving any form of break from their caring responsibilities; even fewer—16 per cent—had any emergency back-up. Seven out of 10 carers were not aware that they were entitled to an assessment of their needs. The lives of carers are therefore one of dedication and love for those for whom they care. They need help and support, and especially respite care.

As the first Minister for Disabled People in 1974, my noble friend Lord Morris of Manchester introduced benefits for disabled people and their carers. I am concerned that the coalition Government plan to retest all those who are on incapacity benefits and that their proposals to change the benefit system may leave people with Parkinson’s and other conditions without the financial support that they need.

Research has shown that many people with Parkinson’s rely on benefits for all or part of their income. Nearly half of people with Parkinson’s of working age are in receipt of incapacity benefit, including 47 per cent of those under the age of 45. Without the right financial support, people with conditions such as Parkinson’s will be unable to live independent lives, which was one of the key aims of the 1970 Act.

Under the heading, “Jobs and Welfare”, page 23 of The Coalition: Our Programme for Government states:

“We will re-assess all current claimants of Incapacity Benefit for their readiness to work”

This could result in people with Parkinson’s and other long-term conditions being wrongly reclassified as capable of work. A lot of these people do work. With the right drugs regime, they can work. However, there are others for whom it would be extremely difficult, and they are very concerned about that.

The assessment for the employment and support allowance introduced in 2008—I know that it was under a Labour Government—has been widely criticised as unfair and inaccurate, especially in terms of fluctuating conditions such as Parkinson’s. The coalition Government have said that they will retest everyone on incapacity benefit immediately and either move them on to ESA and keep testing them yearly or, if the test shows that they can work, move them on to jobseeker’s allowance and programmes to get them into work. I am sure that many—those who may be capable of doing some sort of job—would welcome that, but those jobs have to be available for them. However, if assessments are inappropriate, if assessors are not properly trained and if medical records are not taken into account, those with fluctuating conditions may be wrongly deemed ready for work. People may then be denied the benefits that they rely upon. Many of these issues have already been highlighted by a Parkinson’s UK report, Of Little Benefit and Not Working, which raised serious concerns about the accuracy and fairness of employment and support allowance testing.

However, a great deal has been achieved in the past 40 years. The lives of disabled people and those with long-term conditions have been improved. The Act has ensured that public authorities take responsibility for their well-being, and there has been an increase in equality of access to services. Perhaps above all, we have sought to tackle the stigma attached to those in need of care and support. I hope that the Minister will take note of the great concerns of many people on this matter.