Held back? Car seats for disabled children in Scotland

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1 I ve had wheelchair accessible cabs just drive away from the rank when they see me coming in September my wheelchair Key points Families of disabled children spend significantly more on car seating then families of other children Local authorities often do not accept that it is necessary to supply specialist car seats DLA High Rate Mobility payments are not covering the costs of specialist car seating Capability Scotland Head Office, Westerlea 11 Ellersly Road Edinburgh EH12 6HY Telephone: Textphone: Fax: Scottish charity SC Scottish company SC36524 limited by guarantee Held back? Car seats for disabled children in Scotland Families across Scotland are struggling to buy car seats for their disabled children; vital equipment for postural support and safe travel in a car. By law all children are required to use a car seat or appropriate restraint up to the age of 12. As a result it is often assumed that the needs of disabled children will not supersede those of other children. For this reason many local authorities feel that it is unnecessary for them to fund or supply specialist car seats. However when specialist seats and harnesses can cost up to 10 times more than general needs car seating; are disabled children being held back by gaps in state provision? What is the issue? We believe that families of disabled children in Scotland are being disadvantaged by gaps in statutory provision of specialist car seating. We know that families of disabled children are heavily reliant on car travel and that the right car seating is crucial for disabled children to travel safely. By law all children must use a car seat or appropriate restraint in the rear of the car until they are 12 years old or 135cm tall. However for families of disabled children this requirement can last much longer and specialist car seating can be very expensive.

2 September 2009 Most families spend between on car seating until their child can use an adult seat belt. For parents of disabled children they may have to pay over 2,000 for a car seat and may replace the specialist seat every few years. There are however times when parents of disabled children are able to buy the same car seats as parents of non-disabled children, such as infant carriers or combined seats for babies for example. Unfortunately it is often the case that they have to opt for the more expensive models which provide the most postural support and/or swivel or rigid fixings for children who need to be specially positioned. The necessity to buy top-of-the-range models for children who need to be specially positioned, means that parents of disabled babies and children often do not benefit from shop price reductions or online retailer bargain-basement offers on infant carriers or booster seats. Furthermore car seats for older disabled children often need to be larger and sturdier than those for other children of the same age. In most cases the seats also need to provide additional support for disabled children who are either unable to support themselves or who may not have an understanding of danger whilst travelling in a car. How did we research it? To collect quantitative data on the cost of car seating we conducted internet research with the major retailers of general needs car seating and contacted the manufacturers of specialist car seating for disabled children In relation to the statutory provision of specialist car seats for disabled children, we conducted telephone interviews with the Occupational Therapy Departments of the following local authorities: Edinburgh City Council; Glasgow City Council; East Ayrshire Council; Midlothian Council; Perth and Kinross Council; Moray Council; Scottish Borders Council and Orkney Islands Council. Our qualitative findings come from discussions with families of disabled children who use our services and we also conducted telephone interviews with service mangers, wheelchair and seating centres and charitable organisations that currently grant towards the transportrelated costs borne by families of disabled children. Parents of disabled children tell us that they find the system of funding for car seating, and other disability-enhanced transport costs, confusing and inadequate. Families including a disabled child also struggle to get the advice about car seating that other families take for granted whilst shopping for seats. They are therefore asking charities for help. Given the importance of safe travel to the social inclusion of disabled children, is it too much to ask for statutory funding for specialist car seats in priority need cases? Image courtesy of TherAdapt Products Inc.

3 September 2009 Key Findings Cost of car seating for non-disabled children 3

4 July 2009 Cost of car seating for disabled children 4

5 All parents of babies and young children have to buy car seats and may spend between on car seats until their children can be secured with an adult seat belt. It is often assumed that the needs of disabled children will not supersede those of other children; however parents of disabled and severely disabled children may need to spend in excess of 2000 on specialist car seating. When specialist seating is required by disabled children it can cost up to 10 times more than general needs car seating. There is a premium on special needs car seating, harnesses and equipment required for fitting wheelchairs securely into cars. There is very often no statutory funding available from health or social care to provide car seating for disabled children in Scotland. Local authorities often do not accept that it is necessary to supply specialist car seats. Local authorities provide advice and assessments in relation to specialist car seating for disabled children but they do not generally provide families with any funding to help them purchase this vital equipment.. Edinburgh City Council, Glasgow City Council, Midlothian Council, Perth and Kinross Council, and Orkney Island Council all expect parents of disabled children who qualify for the High Rate Mobility Component of Disability Living Allowance to use this benefit to pay for specialist car seating. Parents of disabled children, particularly severely disabled children, tell us that this benefit is currently inappropriate and inadequate to support provision of specialist car seating. Disabled children under 3 years old cannot qualify for High Rate Mobility payments, and so parents of very young disabled children are getting no statutory help at all with buying car seats. When disabled children do qualify for High Rate Mobility payments ( 49.10/week), parents tell us that this money is already being used up to pay for other disability enhanced transport costs such as Motability car payments, driving lessons for carers and the petrol and other costs of making additional journeys related to disability. Conclusion Families with a disabled child face significant pressures in everyday life that are in addition to those faced by all families with children. A disabled child often requires frequent developmental assessments, medical checks or treatments at distant hospitals. Research has shown that children who have a severe physical disability for example see professionals, on average, 68 times a year. The necessity to get to these appointments and assessments sees families of disabled children highly reliant on car travel and facing increased transport costs. Social Work departments once provided car seats for disabled children in some areas of Scotland, however since Primary Care Trusts have gained more autonomy, this provision has all but disappeared. Due to the increasing gap between demand and supply, families of disabled children often turn to charities for financial assistance with specialist seating. The inadequacy of statutory financial assistance for transport related costs is confirmed by an analysis of families receiving grants from the Family Fund Trust. A third of the sample of families with a severely disabled child, received grants for transport related costs. Such grants were more common for families with very young disabled children, children with particular diagnoses, or severely impaired motor function, sight and speech, and families whose children were dependent on technology. 5

6 July 2009 Whilst we accept that Local Authorities across Scotland may examine a family s ability to pay for specialist car seating before coming to a decision on funding, we feel that a rigid refusal to even consider funding car seats is holding disabled children back and may, in fact, be unlawful. Families of disabled children are being denied this funding on the grounds that all families have the same needs in this regard, yet this is simply not true. Non-disabled children can use inexpensive booster cushions at around 6 years old and eventually an adult seat belt that costs their parents nothing, yet some disabled children will need expensive specialist car seating for their entire lives. Families of disabled children also tell us that they cannot always benefit from the same car seat price promotions that other parents take advantage of in shops or online because of the need to buy more supportive or specialist seating at a premium. They are also unable to receive, or be signposted to, the right advice by high street retailers. What opportunities are there for further research? What services, advice and grant funding are necessary to improve provision of car seating for disabled children in Scotland, particularly for children over 12? How can high street retailers include families of disabled children? Further information For further information about the report and reference details, please contact Susie Fitton, Senior Policy Advisor on or susie.fitton@capabilityscotland.org.uk. This systemic failure to recognise and respond to difference creates disproportionate disadvantage for parents of disabled children who are in effect paying more than their fair share of the costs of bringing up children. 6