‘Increasing waits for specialist assessments are damaging the lives of deafblind people’

By Richard Kramer, deputy chief executive, Sense (@RichardKSense)

The past year has been a difficult one for many of the people that rely on social care to live full and active lives. This week we have launched I fear for my future, a report looking at some of the challenges the deafblind people Sense supports have faced over the past year. Among changes to the benefits system, issues around access to adequate social care has played a large role in the 40% increase in calls we received from deafblind people needing our support.
For deafblind people the first step to getting the social care support they need is accessing a specialist assessment. This needs to be carried out by someone with expertise in deafblindness and not just sight or hearing loss. Multi-sensory impairments are complex and without a true understanding of how the loss of two senses can affect a persons day to day life the recommendations made will often be inappropriate.
The right to have this specialist assessment is accounted for in statutory guidance on social care for deafblind people and local authorities have a legal duty to provide it. There is no timescale for carrying out the assessment, but it should take place within three to six months of the person’s need for assessment being known to the authority. However, it is not uncommon for deafblind people to wait longer than six months for an assessment and we have found that this is on the increase.

We recently supported Katie (not her real name) who is deafblind and has a young daughter. Due to her disability Katie needs some support to empower her to carry out some of her parenting duties, in particular when outside of the home. Katie has a guide dog for support but was concerned for the safety of her daughter when they go out alone. Katie approached her local authority several times requesting a deafblind guidance assessment, but received no response. After Sense contacted the local authority on her behalf several times we eventually secured an appropriate assessment for Katie and she now gets the support she needs.

Distress

Delays can cause an awful lot of distress for a deafblind person as the uncertainty and lack of support they experience in the interim has a detrimental impact of their life. In some cases delays can also mean that a person requires more support in the long -term as they become fearful of leaving the house and need further mobility training as a result.

Once a specialist assessment has been made, it is also vital that local authorities are able to implement the recommendations. All too often we come across cases where a deafblind person is left without support because their local authority doesn’t have the expertise to deliver specialist support or services simply aren’t available.

It can also be because the specialist support the person needs is more expensive than the mainstream equivalent. For example, a communicator guide to support a deafblind person costs a lot more than a personal assistant with no training in communication or guiding but is essential in ensuring that a deafblind person can interact with the outside world.

2014 needs to be a real game-changing year for social care. On the positive side, we expect that the Care Bill will reinforce that deafblind people need a specialist assessment so authorities should include this in their thinking on assessments.

However, cash-strapped councils have been forced to make cutbacks and for deafblind people this has often been at the expense of the specialist assessments and support they need. The Care Bill is due to receive Royal Assent in the near future and is an opportunity to ensure that councils have the funding they need to provide adequate social care to deafblind people and anyone else that needs it.