Susie Fitton outlines the real cost of 'disability-related expenditure' with evidence that proposed cuts in the welfare benefits system will adversely affect families with a disabled child or adult.
For the very lucky, it starts off with the first tiny babygro, choosing the pram and decorating the spare room and it ends (supposedly) with the 21st birthday bash and a toast to the whopping great student debt piled up in the name of university education.
Most parents are only too familiar with the costs of raising children from babyhood to graduation. However, for families experiencing disability, the costs can be overwhelming, debilitating and often lead to poverty, deprivation and social exclusion.
Experts say that it costs £220,857 to raise a child to 21 in Scotland (Evans 2012). The parents of the UK's 770,000 disabled children can expect these costs to treble (Contact a Family 2011). This is mainly because they face extra costs (or disability-related expenditure as it is sometimes referred to) in almost every aspect of their lives including transport, heating, food, holidays and childcare. When you consider that government figures show that 50% of families including a disabled child have an income of less than £15,000 (The Scottish Government 2010) you can see that the numbers really don't stack up.
Unfortunately, the situation for disabled parents is not much better. About 14% of the UK's 14.1 million parents are disabled, and 1.1 million households with dependent children have at least one disabled adult (Morris and Wates 2006). These families are also coping with the burden of disability-related expenditure. In many cases they are unable to work, and increasingly, have to find money to pay for their own support as local authorities try to deal with deficits by charging for care.
Yet, none of this is being recognised by the Westminster Government. Disability-related expenditure, although well researched (Smith et al. 2004; Thompson, Buckle and Lavery 1988; Capability Scotland 2011), is largely ignored by policy-makers and is, seemingly, completely omitted from the thinking behind the Westminster Government's welfare reform agenda.
Capability Scotland is fearful that the economic safety net that keeps families and children out of poverty in Scotland is being undone. The proposals contained in the UK Government's Welfare Reform Bill will make it very difficult indeed to achieve a safe, secure, stress-free place for children to thrive.
'Imagine that you're sailing a raft, and they're taking the logs away from it, one by one, that's what this welfare reform feels like...sooner or later we'll sink. And then you realise there are children on board, it's a nightmare really.'
This quote from the parent of a disabled child highlights the fears of disabled parents and the families of disabled children. As the government presses on with the Bill, households are increasingly worried about the future and the effect that the proposals will have on their ability to pay for essentials such as heating, clothing and food.
Their fears are not unfounded as many of the Bill's proposals will disproportionately target families which have a disabled person. Disability Living Allowance (DLA) is the only non-means tested benefit available to families experiencing disability. Many households use it to help them meet disability-related expenditure such as higher heating bills, laundry costs or getting taxis when the bus is inaccessible for a wheelchair.
Under the government's proposals, DLA will be replaced by Personal Independence Payment (PIP). Due to PIP's more stringent eligibility criteria, the government expects 500,000 of the people who currently receive DLA to be unable to claim PIP, including 20,000 parents. With nothing to replace this lost income, households with a disabled family member face certain hardship.
Families will also lose out on additional 'premiums' or 'additions' which are currently paid to parents of disabled children. Under the proposals, disability additions will be cut in half for all but children with very specific needs, such as severe visual impairment or night-time care needs. This will result in families losing £1,400 per year. In fact, Family Action estimates that this cut will result in a loss of benefits of more than £22,000 of support over the childhood of a disabled child (Family Action 2011).
And all this comes at a time when increases in National Insurance rates, the rise in VAT, cuts to Working Tax Credit, the abolition of the baby rate of Child Tax Credit, a three- year freeze on Child Benefit rates and the use of the Consumer Price Index (CPI) have already forced down incomes for the poorest families.
Further proposals for 2012/2013 include additional lowering of the point at which the family element of the Child Tax Credit starts to be withdrawn; an increase in the number of hours couples with children will need to work to be eligible for the Working Tax Credit (from 16 to 24) and withdrawal of Child Benefit from families containing a higher rate tax payer.
This constant chipping away at the income of families has no doubt contributed to the Institute of Fiscal Studies' (IFS) gloomy forecast that between 2010/11 and 2015/16, 500,000 more children will fall into absolute poverty (Browne 2012), 325,000 of whom will be disabled children. Inclusion Scotland predict that families with a disabled child in Scotland will lose over £3,000 each by 2015 due to cuts in disability premiums and the proposed cap on benefits (Inclusion Scotland 2011).
However, families experiencing disability will also be affected by the government's proposals in other, indirect ways. They are more likely to live in social housing and so may well be affected by proposals to reform the way housing benefit is paid. Capability is particularly concerned at proposals to target families considered as 'over-occupying' a social tenancy because they have a spare room used by a carer or to store equipment.
This may result in the unhappy irony of families experiencing disability, which have managed to secure suitable housing, being asked to 'downsize' and vacate their homes in the context of severe housing shortage. This, at a time when there is a chronic under- supply of one-bedroom properties in Scotland, with 22 out of 32 local authorities having insufficient supply to meet demand (Capability Scotland n.d.). This measure is poorly targeted, punitive and will do little to address the problem of overcrowding.
The Scottish Government has placed the individual wellbeing of children and young people at the heart of its policy agenda in Getting it Right for Every Child, recognising the important role of parents in providing 'good basic care, stimulation and emotional warmth, guidance and boundaries, safety and stability'. There has been an increasing focus on parenting, in recognition that supporting parents is crucial in achieving better outcomes for children and young people.
Capability believes that focusing on parents is the best way to help children and are delighted to be involved in creating the national parenting strategy. We want it to provide a guaranteed minimum entitlement to support to all families in Scotland, and extra help for families experiencing disability. We are pleased to see some local authorities developing their own parenting strategies to consolidate action and coordinate services to improve access to support for parents and families in need.
Our own research has highlighted the difficulties that disabled parents face in accessing services from local authorities so we are keen see improvements for families across Scotland. We are facing an inherent contradiction, however, between a Scottish Government committed to a parenting strategy and supporting parents to be the best that they can be, and a UK government 'austerity' agenda that makes this more and more difficult.
Everyone agrees that children need stable, happy families in order to grow and develop their full potential and that financial stability is key to this. However, when families experiencing disability are being singled out with cuts to benefits and services, are Scotland's disabled children being put at risk?
The welfare benefits system should be our strongest tool to ensure the wellbeing of families. If the UK Government insists on pushing through these reforms, it will be failing parents and effectively sentencing many disabled children to a life of poverty and social exclusion.
Susie Fitton is senior policy adviser at Capability Scotland. She works to exert effective influence to ensure that laws are passed and policies made which give disabled people equal human and civil rights and that attitudes are changed through campaigning, advice and information.
Browne, J. (2012). Families in an age of austerity: The impact of austerity measures on households with children. London: Family and Parenting Institute.
Capability Scotland (2011). Disability related expenditure. Capability Scotland.
Capability Scotland [n.d.] Written evidence from Capability Scotland. See: http://www.parliament.scot/
Contact a Family (2011). Statistics: information about families with disabled children. Contact a Family. See: http://www.cafamily.org.uk
Evans, L. (2012). "How much does it cost to raise a child?" The Guardian January 26 2012. See: https://www.theguardian.com
Family Action (2011). "Support for disabled children cut in half under Universal Credit". The State of Welfare Blog April 1 2011. Family Action.
Inclusion Scotland (2011). Welfare reform briefing September 2011. Inclusion Scotland.
Morris, J. and Wates, M. (2006). "Supporting disabled parents and parents with additional support needs." Adult Services Knowledge Review 11. London: Social Care Institute for Excellence
The Scottish Government (2010). Tackling child poverty in scotland: a discussion paper. Edinburgh: The Scottish Government. See: http://www.gov.scot
Smith, N., Middleton, S., Ashton-Brooks, K., Cox, L., Dobson, B. and Reith, L. (2004). Disabled people's costs of living. York: Joseph Rowntree Foundation
Thompson, P., Buckle, J. and Lavery, M. (1988). Not the OPCS survey: being disabled costs more than they said. London: DIG.