Working Families response to the call for views on children and young people with SEN and disabilities

Working Families response to the Green Paper:
Children and Young People with Special Educational Needs And Disabilities –Call for Views

Introduction

Working Families is the UK’s leading work life balance charity.  We run a free legal helpline for parents and carers who need advice with employment rights and benefits.  We support a network of 2000 parents of disabled children who work or wish to work and know from our callers the difficulties many families face in accessing appropriate services.  We know that the lack or inadequacy of services can cause families with disabled children to leave employment resulting in poverty and hardship for the whole family.

Working Families also works with employers to encourage family friendly workplaces and conducts research on the interface between work and family life.  As part of our support for our Waving not drowning network of parents with disabled children we publish guides on how to combine work and care. We are currently producing a guide to parents whose children are in the transition between child and adult services.  

We recognise that the Green Paper is primarily about improving health, education and social services.  These services and their responsiveness to the needs of families with disabled children also impact on the employment opportunities of parents.  Many parents with disabled children cannot work full time and manage their caring responsibilities.  We urge the Government to improve the supply of flexible and part time jobs, in particular by ensuring more jobs are advertised on a flexible or part time basis to allow more parents of disabled children to work.

In our response we will focus on questions (5) on how to improve services and decision making and (6) how we can improve the transition from school to adult life for young people and their families.

(5) Choice of schools and services

Parents in our network highlight some particular concerns

a)     Choice of schools and teacher training

Parents of disabled children may be faced with a very limited choice of schooling locally.  They may encounter difficulties in ensuring their disabled child is educated alongside their siblings if there is no appropriate provision.  Teachers may not be trained in the range of special needs presenting in mainstream schools and a lack of understanding may contribute to the high levels of exclusions faced by disabled children and those with SEN statements. 

As well as formal exclusions, parents of disabled children report “informal” exclusions where a school calls a parent to ask them to take their child home.  It may be that a child with autism finds a particular lesson or activity difficult.  Or it may be that a particular medical intervention is needed but there is no one trained – or willing – to provide the necessary care.

These informal exclusions make parental employment very difficult.  Only the most understanding of employers will provide flexibility that allows an employee to leave work at almost no notice on a frequent basis. 

Recommendations:
We recommend that further research be carried out on the use of informal exclusions and guidance given to schools to end its use.

We recommend that all teachers and support staff be given comprehensive training in how to meet the needs of disabled children throughout the school day (not just during lesson time).

b)     School transport and extra curricula activities

Parents encounter limitations on their child’s ability to participate fully in school and extra curricula activities when services are not joined up.  Parents are often dependent on local authority transport services to collect and return their child, and many report that such services are inflexible.  For example, a school bus may only run at a particular time thus preventing a disabled child from participating in an after school activity.  Some extended schools only provide services open to disabled children in one location, but if local transport services are not joined up, disabled children miss out. 

Parents also report the frustration that local transport services appear to operate without consideration of the parents’ needs and without consultation with parents or social services.  For example when a transport provider simply reports that they are changing a route and picking up a child at 8.30 am instead of 8.00 am this can have a significant knock-on effect on the parents’ ability to get to work on time.

Recommendation:

All services providers involved with disabled children should consult with parents about changes to that service.  Parents should be given opportunities to be involved with transport changes that will affect their family.

c)     Childcare

The lack of affordable, appropriate and accessible childcare for disabled children is a major barrier to parents working.  Local authority childcare sufficiency assessments have identified gaps in provision for disabled children, especially for older children. Working Families conducted a survey of summer holiday childcare in 2009 and found 69% of parents surveyed were not satisfied with the summer care available for their child.  Parents reported that specialised provision, where available, was oversubscribed and did not cover the whole holiday period.  Mainstream play schemes were under prepared for the needs of disabled children.  Parents were worried about the wellbeing of their child in an unsuitable scheme. Twenty-eight per cent of parents had no information about summer childcare available.

The lack of available care led to stress and to families reducing their hours (and often their income) in work.  Many parents had to take unpaid leave, or work in shifts which reduced their time together as a family in the summer holidays. Three per cent of the parents we surveyed had had to leave their jobs as a direct result of the failures of childcare.

Recommendations:
Urgent attention should be given to improving the availability of summer holiday childcare for disabled children.  It should be available for the whole summer and for the full working day.

The information given to parents by Family Information Services and Social Services about childcare provision needs to be improved.

d)     Hospital and other appointments

Having a disabled child can mean that parents who work need more time off to meet their needs.  Employees who are parents of a disabled child (where their child is in receipt of DLA and where they have been working for at least a year) may use their parental leave flexibly to cover scheduled appointments.  However, parental leave is unpaid and should be requested 21 days in advance.  If a clinical appointment is changed at short notice, this causes difficulties for parents in work.  Emergency time off for dependants is not intended to cover routine appointments.

When a disabled person turns 18 and moves into adult services, the parent may find that they have no rights to take time off to support their child with hospital appointments.

A caller to our helpline was concerned that her daughter with Downs Syndrome – now in her early 20s – needed a hip replacement.  The caller had no right to take parental leave but needed time off work to look after her daughter during her convalescence.

Recommendation:

Health and other support services should be encouraged to offer co-ordinated appointments for disabled children far ahead, to improve parents’ ability to plan for time off.   Employment law should be changed to make parental leave more flexible and the Government should consider if more can be done to support parents who lose out on pay or holiday because of their caring responsibilities.  A form of leave for carers of adult dependents – similar to parental leave – is urgently needed.

(6) Improving transition

Many parents in our network see employment as the route out of poverty for themselves and their family.  They want to be economically active for their own well being, and to provide a role model for their children.  However, some parents report that, just as their contemporaries are taking on more work as their children leave home, parents of disabled children find themselves giving up work to cope with the move into adult services and the care of a dependent adult.

One key difficulty for parents is that transport to further or higher education colleges is unavailable.  A disabled young person may not be able to negotiate public transport alone and may need a taxi service or a companion on the journey.  Parents also face much longer holidays from colleges and their child may not be in lessons for the full day.  Without the appropriate support, disabled young people may find continuing in college education difficult, or their parents find that they have to reduce hours at work to support them.

Working Families urges the Government to continue the financial support provided by the Independent Living Funding which allows disabled people to continue to live independently.  Reducing this fund is a false economy and is likely to mean more parents of disabled young people are unable to work as they will have to support their child themselves, or that more disabled young people have to live away from their family home.

Recommendation:

Every disabled young adult should have a personalised transition plan that outlines how they are to move into independent adult life, based on their own ambitions and wishes.  However, when these are not working well, they young person needs a single point of contact to discuss the difficulties and make any necessary changes.

Working Families October 2010