A disabled peer has warned colleagues in the House of Lords that independent living for disabled people could become “just a memory” if the government does not put enough money into the social care system.
Baroness [Jane] Campbell spoke out this week during the ongoing Lords committee stage of the government’s new care bill.
More than 100 amendments have been tabled to the bill, which will modernise care and support legislation in England and replace the current complex web of laws.
The government says the bill will prioritise the “wellbeing” of individuals, and introduce a new funding system based on the recommendations of the Dilnot commission on the funding of long-term care, including a cap on lifetime costs for eligible needs.
Baroness Campbell told fellow peers that the voices of the thousands of people who use social care needed to be heard on the issue of funding, including more than 70,000 who use direct payments.
She warned that progress made since direct payments were introduced 10 years ago was slipping away, and spoke of a time when disabled people were “proud to be employers” and to employ their PAs “at a good rate, with holiday pay, and we were able to advertise”.
She said: “We were equal to those who employed individuals in their own companies. Ten years on, many cannot even give holiday pay and cannot advertise. They fall back on costly social care services or enter hospital as a result of not being able to employ assistants.”
She asked peers not to forget the voices of those who say: “‘We, too, wish to know that the money is settled.
“‘We, too, need a voice to remind people that, in order for us to employ or control our services, we must feel that we can do this with equality and dignity and do it absolutely properly.’ Otherwise, independent living will become just a memory.”
Earlier in the week, Baroness Campbell told a seminar organised by the all party parliamentary disability group, which she co-chairs, that the bill was of vital importance to disabled people because “we rely on support for our very lives” and “we need it to engage in the world we live in”.
She said the new bill was “a laudable attempt to tackle what was an outdated hotchpotch” of social care laws.
But Baroness Campbell said that she would push for improvements to measures in the bill that would introduce “portability” of support packages for the first time.
The portability measures in the bill aim to ensure continuity of support for a disabled person with a care package who is moving to a new local authority area.
Although the bill includes new duties on local authorities to work together to ensure that equivalent care and support is in place when a disabled person arrives in the new area, there are key areas that the government is so far refusing to address that Baroness Campbell believes would ensure genuine portability.
She said: “I think the days have gone when disabled people should be tied to their local authority just because they have a care package that they feel meets their needs and they are afraid to move in case the new local authority will not give them the same.”
Hadrian Coulton, a disabled geologist, who travels extensively with his work, told the seminar that he agreed with Baroness Campbell.
He said: “I don’t know why a care package has to be stuck to a local authority, which is stuck in one place, while for my work I have to travel all over the world.
“I think we should have something attached to the individual, which moves around with the individual.”
Last week, the Liberal Democrat care minister Norman Lamb announced in a discussion document that the new national threshold for council care and support – due to be introduced in April 2015 – would be set at a level equivalent to the “substantial” level in current guidance.
This is the level that the majority of councils currently use as their threshold, but disability organisations are campaigning for this minimum threshold to be lowered to “moderate”, the second lowest of the four levels.
4 July 2013