Learning Disability Wales responded to the Welsh Government’s Child Poverty Consultation (17.January 2020). We note that families with disabled children are much more likely than other families to be poor. This is because they often do not receive enough support, both financially and in terms of care. Parents of disabled children struggle to stay in paid employment because they do not have reliable and adequate support for their child. Below you can read our whole response including our recommendations.
Disability benefits do not cover the cost of care
A study into the finances of families of disabled children (opens as PDF)  conducted in 2018 found that only 18% of respondents said that their disability benefits cover the extra cost linked to their child’s disability or health condition. These extra costs are significant, with 33% paying over £300 a month and 10% paying between £500-£1000 a month in disability related cost. 36% reported that changes to the benefits system in the past 2 years had left them worse off.
In Wales the impact if funding cuts has been amplified through cuts to the Family Fund. For over forty years the Family Fund helped redress the economic disadvantage of disabled children by distributing public money across the UK in the form of grants to families with sick and/or disabled children. The administrations in Scotland, England and Northern Ireland have all maintained their financial commitment to low incomes families by supporting the Family Fund. However the Welsh Government has chosen to cut their contribution since 2016.
Difficulty for families staying in work and navigating support
Parents of disabled children in Wales often struggle to hold down a job. 87% of the parents in the Counting the Costs study reported that they or their partner were unable to work as much as they would like to due to their caring responsibilities.
What we know from our members is that families often find it extremely difficult to navigate and access the support they are entitled to. The effect of these difficulties navigating support is that it can become a full-time job to make sure that their child is getting adequate support.
This leads to significant inequality in service provision – while parents who are better able to navigate the social care system, for example those from a middle class background with high educational status (for example parents who are professionals in the care sector themselves) are able, if at tremendously high cost to themselves, to get the best possible care for their children. Those who do not have these resources will struggle to access the help needed.
Black, Asian and minority ethnic families are particularly affected here with significant barriers to accessing support. Amongst these barriers are that information is often not available in an accessible version, that support services do not proactively reach out into minority communities. We have also heard concerns from parents from minority backgrounds that professionals might treat their children more harshly than white children when it comes to challenging behaviour. This means that for parents from minority backgrounds the barriers to accessing appropriate support are even higher.
A major issue that affects disabled people and their families is transport. Public transport across Wales can be unreliable and difficult to navigate making access to all different kind of services difficult. These issues are particularly pronounced in the rural areas of North Wales.
Families of disabled children also report difficulty with specialist transport. This means that children struggle to get to school on time and to take part in other services. Unreliability of specialist transport for disabled children in turn means unreliability for parents of disabled children, who become unable to fulfil their professional obligations.
In order to resolve these issues and make sure that disabled children and their families in Wales can access the services which they need Welsh Government should:
- Increase funding for Family Fund to enable families of disabled children to access support that is individual to their needs.
- Coordinate services better and make it easier to navigate support. In order to tackle poverty and inequality, support must be made available to everyone, not just those who have the skills to advocate for themselves. Families with disabled children should be given person centred support through case coordinators who can help them navigate and access support.
- Make a special effort to reach out into Black, Asian and minority ethnic communities in order to make sure information about available support is accessible to everyone
- Make mainstream services, like leisure provisions and community services, more accessible to disabled children and their families
- Improve transport, especially in North and Mid Wales.
- Invest in specialist transport in order to make sure disabled children are able to actually access services