Independent Living Survey 2016 - some very worrying findings

In April 2015 the introduction of the Care Act in England radically changed the way in which care and support services are organised. The act places local authorities under a very powerful obligation. They are charged not just with having regard for, but with actually 'promoting' an individual's wellbeing. The act also covers many of the obligations the government has signed up to under the UN Convention on the Rights of Persons with Disabilities.  In this regard the Care Act is a very significant and welcome development.

However new duties are being placed on local authorities at a time of unprecedented cuts to their funding.) In the lead up to the introduction of the Care Act, adult social care departments have had to make 'budget savings amounting to 26 percent over the last four years, the equivalent of £3.53 billion'). Further, the Care Act is being put in place alongside a major organisational change to the way care and support for many disabled people is funded as the Independent Living Fund has now closed and its once ring-fenced budget has been transferred to local authority control.

This report, published by In Control on behalf of the Independent Living Strategy group, presents the findings of an online survey looking at what impact the Care Act is actually having on the day-to-day lives of disabled people living in England today.

Key Findings

Choice and control Just under half (48%) of all respondents reported that the choice and control they enjoyed over their support was poor or very poor. A third of respondents (33%) said that the level of choice and control they enjoyed over their support had reduced or reduced significantly. Significant numbers of people reported a range of different restrictions being placed on how they could use the money available for their support: for example 50% of respondents reported support was restricted to personal care tasks only.  

Quality of life and wellbeing Well over half (58%) of respondents reported that their quality of life had reduced or reduced significantly over the past 12 months. A quarter of respondents (25%) said the hours of work or volunteering they could do had reduced or reduced significantly. Almost two out of five (38%) reported they are having to rely more on family and friends for support. More than a quarter (27%) of respondents reported an increase or a significant increase in the amount of money they have to contribute towards the cost of their support.  

Quality and amount of support About the same numbers of respondents rated the quality of their support as good or very good (41%) as rated it poor or very poor (40%). However, the amount of support was rated as poor or very poor by 44% of respondents compared to 30% saying the amount of support they had was good or very good.  

Experiences of assessments and reviews The majority (86%) of people reported that when their local authority had assessed their needs they had listened or partly listened to them. Of those respondents who said their support had been reviewed in the last 12 months, just under two thirds (63%) did not know how much money was available for their support. One in four people had been told their support would be reduced because of cuts/savings and/or there is a limit to the amount of money you can get for a particular service.  

Experiences of former Independent Living Fund recipients Two out of five (41%) former Independent Living Fund recipients reported that the amount of their support had decreased or decreased a lot, and one third (33%) said that their quality of support had got worse or a lot worse. Around one third (34%) of former Independent Living Fund recipients reported new restrictions being placed on their support.

Information and advice Over a third of respondents (37%) struggle to find the information and advice they need. Most commonly people rely on friends and family (33%) and user led organisations (22%) for information and advice. Only 16% used their local authority's website for information. In terms of what people need advice and support with, just under a half (45%) said they needed help understanding their rights under the Care Act and a third (34%) solving problems with their local council. Over half (51%) of direct payment recipients reported that the information, advice and support they get to manage their direct payment was poor or very poor.