Increasing choice and control

Written by Ben Palmer, Contact a Family

An essential principle to supporting children and young people with disabilities and their families is respect. Where individual 'views, wishes and feelings' are fully recognized and valued, services and outcomes are meaningfully personalised to 'aspirations'. Choice and control is a significant aspect of this, not least in relation to personal budgets.

It can sometimes seem challenging to achieve effective and meaningful participation; however it is often the simplest things that have the biggest impact. Where professionals have demonstrated their willingness to engage in open and honest conversations with families they have been able to develop services that make a real difference.

The experiences of the parent carer forum in Middlesbrough provides an example of how the 'views, wishes and feelings' of children, young people and families have been effective in influencing policy and practice.

The parent carer forum in Middlesbrough has developed positive working relationships with council officers, local politicians and Members of Parliament. They have proactively engaged with council work-streams and focus groups, and arranged regular conferences to increase awareness around disability and represent the views of families.

Following the conference in 2008, Parents4Change produced a report that highlighted a number of areas where families felt that the availability of short breaks locally did not fully meet their needs. The report highlighted that provision appeared to be led by 'resources' rather than 'needs'; and featured complex processes and eligibility criteria that made it difficult for families to access support.

The key points raised by families were:

  • Eligibility Criteria- criteria should be needs-led not resource-led and the amount of red tape needed to access services needs to be greatly reduced.
  • Short breaks should be made available for the whole family - so everyone can go away together, for example on activity holidays, and for weekends away with other families who have children with disabilities.
  • There needs to be more education of the general public about disabilities and special needs to increase tolerance, understanding and eradicate ignorance.
  • There should be proactive access to and availability of information and support, e.g. a directory given to each individual that includes all the relevant information a family needs.
  • A keyworker who families can call up for information and take up the individual needs of a family to save parents lots of time and energy finding information out for themselves.
  • It would be helpful if there was more promotion and expansion of all current services. There is recognition that there is a lot out there but families need to know where services are and also be able to access them.

Middlesbrough Borough Council were committed to improving services and held a 'visioning' day bringing together more than 80 parents and professionals to consider short break provision. At this event the aim was put forward that 'Disabled children, young people and their families are involved in developing a range of flexible and easily accessible, high quality short break services and activities'.

As an outcome of the 'visioning' day, a short breaks focus group was established in partnership with Parents4Change. One of this group's main achievements was the review and subsequent change to the eligibility criteria for short breaks. This demonstrated how the 'views' of children and families can result in positive changes to policy and practice.

During the conference in 2009, families had the opportunity to express their view on how support for disabled children should be prioritised.

This feedback helped shape the 'Multi-agency Strategy for Children with Disabilities'. This strategy included the appointment of a short breaks facilitator and tendering of a new short breaks service.

The conferences were beginning to show real impact in gathering the 'views, wishes and feelings' of families, presenting these to strategic decision makers and enabling participation and co-production of services. Achievements include a new short breaks 'text service'; improvements to the key worker service; and greater flexibility for short break personal budgets.

The increased offer of personal budgets for short breaks was implemented following a successful pilot programme with families. Examples of how these have provided families with greater 'choice and control' include those of Amy and Ruth.

Amy is mum to a little boy with complex disabilities that requires 24 hour care. Having a short breaks personal budget has enabled them to purchase a travel bed to allow the family to take trips together. She said the flexibility and choice they had received through the personal budget was 'fantastic!'

Ruth is mum to a young man who has autism and Tourette's. They use their short breaks personal budget to go on holiday as a family and to pay for a season ticket so he can watch Middlesborough Football Club, which he loves!

Recently Middlesborough Borough Council has been involved with a successful pilot scheme to develop the Personal Budgets Outcome and Evaluation Tool (POET). This is expected to be of great value to councils and health services in demonstrating how personal budgets can enable children and young people with Special Educational Needs and Disabilities to achieve their ambitions in life. 

There is no question that the relationships that the parent carer forum has been able to develop with council officers, local politicians and Members of Parliament have proven to be of great value. The conferences too have been a significant catalyst for change. The success is clearly demonstrated by the increase of short breaks for families, which has risen from 28,090 to 49,593. In addition the overall number of short breaks provided has also increased from 300 to 508 with continued improvements expected.

The forum continue to work closely with the council including the CEO of Middlesbrough Borough Council; key political figures and the Mayor to ensure that the 'views, wishes and feelings' of children, young people and families remain central to all decision making in Middlesbrough.

Mum Ruth said:

"It's a good service - it's getting him out of the house as well as giving us a chance to do more as a family together. The holiday is great as we have a break and can relax as he does more on his own getting a level of independence in a safe place where he feels comfortable - life is a lot better now with a personal budget!"

Edward Timpson, Minister for children and families:

"The Act places the views, wishes and aspirations of children, parents and young people at the heart of the system and requires a culture change in the ways in which professionals work with families and with each other."

Key learning

Events: Regular conferences increase public awareness around disability and represent the views of families to council decision-makers.

Reports: Families experiences are gathered and used to inform the forum's annual report which provides an evaluation of needs in the area

Communication: Open and honest communication has fostered good relationships and provided a conducive environment for co-production.

Relationships: Positive relationships with local politicians and members of parliament increases public support and enables effective participation.

Related information