To Wendy Ballard
Financial Assessment Team Leader (Fairer Contributions Policy)
Cambridgeshire County Council
Policy – Proposed Changes
A Response from NAS Cambridge Branch
Personal Independence Payment (PIP) is paid to enable greater independence and to enable the development of skills in independence. Therefore, to take the full amount of this benefit into account in assessment for financial contribution for services will cut into the benefit payments to the extent that, for many individuals, it will inevitably result in them having less income to pay for other services which help to reduce their reliance on help from carers. A good example of this is paying for activities.
Activities are needed by people on the Autism Spectrum to structure their days and weeks. Routine is very important to most people with ASC as it gives predictability and rhythm to their week. This helps those people to manage the very high levels of anxiety that they experience every day.
Activities like sport/horse riding/travel to town all help with physical and mental health, break social isolation and enable people with ASC to achieve or even excel in something that they can enjoy and take pride in. Taking part in regular activities means more for people with ASC than just that activity itself.
Activities enable carers to manage the autistic members of their families, especially those with complex needs, challenging behaviour, and high care needs. Carers also need support and planned activities give both cared for and carer a chance to meet others and indeed, to break that social isolation that many parents/carers of people with ASC experience due to the fact that they deliver care within their own home. Being able to afford activities is essential to meet the needs of an autistic member of the family who requires predictable, consistent routines to maintain a sense of equilibrium.
Without this, more individuals and carers would become more dependent on services – which defeats the whole purpose of the awarding of the PIP benefit in the first place.
Fewer services are now available from the Local Authority, so increasingly people have to buy in their support or additional help from elsewhere. If they have to pay more to the Local Authority, then they will be left financially stretched and unable to buy in other support/pay for activities which, in turn, would render them more dependent on the Local Authority for help. Much help is no longer available since Central Government cuts to Local Authorities have severely impacted on the budgets of the Local Authorities.
We ask that Council members when considering this proposal be aware of this; stress is a major barrier to healthy functioning in most autistic individuals and ways to manage this and to alleviate this are key tasks for both the individual and the parents/carers involved with them. This was recently evidenced by Research Autism in work this charity carried out in 2016 and reported on:-
98% of autistic adults say that stress is a significant issue for them
95% of parents/carers say that stress has a high or very high effect on their autistic child’s education or work
86% of autistic adults say that stress has a high or very high effect on their mental health
98% of parents/carers say it is difficult or impossible to find effective support for their children/family member
The stress referred to here is the chronic stress about everyday life that autistic individuals experience, to quote Richard Mills, Research Director at Research Autism;
‘It is clear that autistic individuals experience high levels of stress in everyday life. Chronic stress reduces ability to participate in academic, work, leisure and social life and heightens the risk of ill health…..’
Use of PIP
Those adults who live in ‘supported living’ accommodation need to use their benefit to pay their bills and any therapeutic interventions from which they benefit (various forms of therapy, maintenance of a car helps people to feel less isolated and to participate in activities at a level they can manage). To base assessment on the full amount of this benefit would have an adverse impact on their ability to maintain systems which help them to manage their daily lives.
Short term care to be charged for under the residential rules; this proposal to take all income into account for those receiving short term/respite care (a few weeks) could be severely damaging financially to this group of people because they still have to maintain their homes and pay their usual utility bills while they are not occupying their own homes for the few weeks that they require short term care.
Family carers may be reluctant to take a much needed break if it is likely to create financial hardship for their cared for member, that is, if they will struggle to manage their regular financial commitments as well as pay for a period of respite care. So we oppose this proposal.
Charging for Appointee Services; the proposed charges would add considerably to the monthly costs of both those in residential care and those in the community receiving services. For the latter group, an increase of £10 per month on top of the charge for their support services would make it even harder for those struggling to pay their bills.
Importantly also, to levy such a charge on vulnerable individuals who rely on the Council to manage their finances for them, would place the Council in a position of Conflict of Interests – the Council would be Appointee for those individuals and at the same time would be paying itself from those same funds held by those individuals. This position would be untenable. We therefore cannot agree with this proposal.
Payment by Direct Debit; we believe this should remain an option only, as is proposed, so we have no objection per se, however, for vulnerable people the same applies as we have stated under Proposal 3 above – how are their interests protected if County Council is both Appointee and payee? How are their payments for services currently managed?