We promote the rights, quality of life and opportunities of people with learning disabilities and their families. We do this by working with people with learning disabilities, their families and those who support them.

An Ordinary Life

Working with families with a technology-dependent child or child with complex health needs to develop more family centred and personalised package of support.

Funded by Department of Health (2011-2014)

Phase 1: Good practice

Interviewed 13 children and families across England:

• Some of the young people were using personal budgets.

• One family had a circle of support• Two children had attended mainstream school• Some had gone through the person centred planning

approach to get their personal budget.• Two young people have even been involved in

piloting the new personal health budgets.

Themes from interviews

− What life is like− Common issues− What helps

What life is like: Education

1 child is in mainstream school. “I have to drive her on school trips”.1 child had dual placement at Primary School -

Secondary School.“The pace was too quick and he got stressed the night before he went to school”.1 child attended mainstream, but now in a special

school.

What life is like: Care packages2 of the children have intensive nursing support- “If the carer does not turn up he cannot go to school”.- “The package has freed us to be parents...the physio he has is painful and I don’t want to be hurting him”.- “We never get enough time to know if we get on with the person from the nursing service”.2 of the children have daily support. 3 young men have daily support paid through a Personal Health Budget (2) and Individual Budget (1).

What life is like: Leisure− “She cannot do swimming or karate so it would be good to have activities

we could buy with her Individual budget”.

− Going out on trips – “we have to take the spare ventilator with us in case the other breaks down so it becomes prohibitive. An hours drive is enough”.

− “She doesn’t go anywhere unless we take her”.

− “We can’t even go into Claire’s Accessories or Sportsworld because of the wheelchair...if she needs changing she needs to go home”.

What life is like: Friends and family− Friends - “It’s when she wants to go to her friends houses.

They don’t ask, as there are accessibility issues going to their houses. They come to her all the time, which is no respite for me. She gets sick of being in her own house all the time”.

− Family - limitations over staying with family members “He cannot stay over at his Dad’s because the DFG can only pay for adaptations to one house”.

− “Visiting families is ok for one night, but then he can’t use the bathroom facilities... It means we can’t stay for longer”.

Common issues: Housing adaptationsDisability Facilities Grant :• Length of time (up to 4 years).• Choice over builders.• Some adaptations refused e.g. porch for wheelchair. • Had to get bank loan refused before go-ahead.• Had to keep child off school for the Education Welfare Officer

to report it, in order to move it forward.• One family lived in a house allocated for disabled people but

it is a townhouse with no bathroom or bedroom on ground floor.

Common issues: Wheelchairs

“Her wheelchair is in two bits – getting out on your own is difficult”.− Delay in obtaining new wheelchairs and repairs (improvements in area where Whizzkids has taken over).− Issues of maintenance if choose a wheelchair not offered by local service.− Different manufacturers for chair and seat/moulds can cause confusion

around maintenance.− Storage.− Battles and fights to get the choice of wheelchair required.“If the Individual budgets are rolled into everything I think it will solve lots of problems and has a real potential, especially when buying equipment”.

Common issues: Transition− Children and Adult services would not work together to give a family with two disabled

children one pot of money for their Individual Budget “not seeing family as a whole”

− “Despite Social Services being informed that Ami will need support eight months before her 18th birthday, she still has not been offered anything (DP for STBs has stopped), and I’ve not heard the results of the Continuing Health Care funding assessment”.

− 2 young people only went to college because they had a Personal Health Budget: “I was so scared of him leaving school – if it wasn’t for the Personal Health Budget he’d be in residential without a doubt”.

− Coordination in adult health services – “the Paediatrician was the glue but there is no-one in adult health, we need a person in his life in a supporting role”.

What helps: Individualised funding2 young men using PHBs“Before the PHB we were not able to do what others took for granted. The little things like the theatre, visiting friends. I had no freedom, no life and no choices. Now I’m taking on more work now I can pay someone to look after Pete. It’s given me control and choice in my life massively”.

Child working towards a PHB“If there was a PHB there could be a contingency budget for emergencies – I could have booked into a hotel without the stress(when there was structural damage to the house)”.

What helps: Individualised funding2 using Individual Budgets

“This put the family in control”.“It means I’ve got an ordinary life – I’ve gone to work and been successful in my job; at 20 Josh is still living at home. It means our own physical and emotional health is protected”.“It bought choice” – family who chose for child to be under Great Ormond Street Hospital as the IB pays for the train fares etc.

What helps: Emergency planning- Most families have no plans in place, but are aware of this:

- “No and I am quite conscious of it. I don’t think about it. I don’t know what we would do”.

- “We play it by ear”.

- “We wing it”.

- “We take one day at a time, it’s hard to plan for the future”.

Emergency planning

What helps: Circles of support- “Every family needs a circle and support plan”.

- Member’s of Elijah’s mum’s Kindred Spirits group have become

their circle of support. They meet at her house and supported her in completing Elijah’s person centred plan and are working on his support plan.

- One parent commented that it is difficult to ask others for help when you have always done everything for your child –

“The concept is great, but hard to do”.

The guide

What helps to have an ordinary life – what can make a difference?

Phase 2: Trying out ideas in five pilot sites• Blackpool

• Gloucestershire

• West Sussex

• Camden, Islington and Haringey – audit of short-term breaks.

• Nottingham city – evaluating Personal Health Budgets for children and young people.

What have we learned from phase 2 so far?• Budget wars• Pain management• Personal budgets and the workforce• Getting out and about• The ‘system’• Role of a navigator• Developing networks and planning for the

young person

Contact details

Jill Davies

020 7803 1141

jdavies@learningdisabilities.org.uk

www.learningdisabilities.org.uk