It’s been a struggle for people who are disabled and their families to have some rights as to how, where, when and by whom they are supported.
Usually, the state would take control of these matters.
We found that individual solutions not only resulted in a much happier family but was much better value for money.
Power, basically, is equal to information and money.
Shifting attitudes isn’t easy, but it can and has been done.
Culture change isn’t easy but it can be achieved.
Professionals need to realise that they are valuable but so is the experience of the families and people living with a disability.
We really need to start sharing the images of what is possible. Start to focus on what people can do rather than what they cannot.
I was delighted to come to Inclusion Ireland’s Personal Budgets event in Dublin, as the new minister displayed his commitment to giving people and families in Ireland more control over their support.
It’s been a long extensive struggle for people who are disabled and their families to be heard and have some rights as to how, where, when and by whom they are supported. We have a history of either demonising people who are disabled, or evoking sympathy and protection as the most vulnerable in our society. Rarely are we presented with the gifts, assets and contributions people who are disabled may bring and this is one of the fundamental culture shifts to achieve.
Traditionally, the state would look at deficits and problems and then aim to offset those with services over which the person themselves or their family have little or no control. Whilst this can be seen to be a sympathetic service that people should be grateful for, it’s inefficient and outdated. Whilst working in a “respite” provision, I had many conversations with families. The bad terminology of “respite” (which means getting rid of a burden) was not a great start. The whole idea of this provision was to ensure families were given the ability to continue to support their loved one. In reality, for many families it meant a stressful build-up of anxiety, from completing all the documentation needed such as medication forms and clothes lists, to much more serious anxieties as to who else will be in the unit, or what will the staff be like?
An average of over 70% of families felt that the service did not significantly impact on their ability to continuing caring, but that they had fallen into a sense of “that’s what we need to do” and “that’s when we should go out and feel unburdened!”. When we shifted this to what would really work to help you to continue to support the person you love, the answers were very different. “If the person was doing something they were happy doing instead of being “sent” somewhere”, “he just hates shopping so actually 2 hours every Saturday afternoon would be much better for me”, “she hates leaving the house, so support in the house for an overnight on a Friday or Saturday whilst me and my husband go away for the night would ease a great deal of upset pre-respite”. As we worked together through these, we found that individual solutions not only resulted in a much happier family but was much better value for money.
The shift towards people having a right to control their support means shifting power and shifting attitudes.
Power, in basic terms, equates to information and money and that’s where we need to start – enabling people and families to have good quality information and building on the right to start to control the funds for their support. Shifting attitudes isn’t easy, but it can and has been done. The disability movement, like other movements, needs key moments and unity with others to shift discrimination. Similar to other movements (such as race or sex discrimination movements), the disability movement now seeks key allies in non-disabled supporters of the cause. We still have a long journey ahead, with many still retaining the view that some people who are disabled are uneducable, unable to live in society and somehow less human… (s)he doesn’t feel pain, (s)he doesn’t understand.
Culture change isn’t easy but it can be achieved. There are two types of culture that need to be addressed. One is by statutory services – the “parental culture” – the “we know best”, “its our job” attitude. Professionals should recognise that whilst they might hold an academic expertise in a variety of labelled conditions, they do not hold expertise by experience in the way that people themselves and the people who love them do. Particularly for people with long term conditions, families are astute and excel in researching. They own the label, thus the majority, to do their utmost with passion to find out what might be helpful. This has started to be respected by some and in a few places.
The other culture change is the “dependency culture” – families who have a loved one who needs support very early on, are advised to display the persons worst day, worst behaviour, worst traits etc. as that is the most effective way to get resource from the state. This shifts people into thinking that anyone who needs significant support belongs to the state rather than themselves or their families. There are two difficult perverse incentives with these. The state pulls people so far into “service land” that they and the person lose the benefit of being in “real life”, with all its own natural resources being lost. Another is the sad fact that families feel they have to abandon their loved one in order to get support.
Shifting control of the resource with the right information has been life-changing for many people. People who start to self-direct their own support get to the crux of what works and doesn’t work. As one pioneer of self-directed support said, “I want a life not a service”. The difference it makes to people’s lives cannot be underestimated. There is now strong evidence from POET (Personal Outcomes Evaluation Tool, In Control) showing the difference, but also showing what process works and doesn’t work. This gives a direct voice from people’s experience, and helps in supporting and directing the change needed from statutory services, to achieve the best outcomes for people.
Our expectations as families, professionals, as a society are still very low and very poor. Families who persevere to enable their child to stay in mainstream school are labelled as “in denial”, not accepting the child has a disability. Instead, we should be recognising these families as pioneers of inclusion; they are making the society I want to live in, where no one has to be separated or contained.
So, we really need to start sharing the images of what is possible. Start to focus on what people can do rather than what they cannot. What contribution people can and will make to our society. Most importantly, show the difference to our society when people are truly included and accepted, and allow people to have a life worth living.
John is 28, labelled as having a learning disability. His life had been special. Attending special schools from primary through to a segregated residential college and then into group home accommodation costing 70k p/a. John’s dad contacted In Control at the end of 2014 for advice and support following an incident of abuse in the group home, stating they had lost confidence in the system to give John the right provision of care. John moved back into his parents’ home which was unsustainable, not what John wanted but more preferable to him than the group home.
We created a circle around John and his parents, which gave them information and rights under the then very new care act, and developed a plan. The plan included what support & accommodation John and people who love him felt would work for him. Initially, the local authority needed lots of persuasion to accept the plan – they tended to spend more time offering other large group-supported accommodation, that they commissioned and had a vacancy in.
The family, with the support of a local user-led organisation, started to employ PAs for John, and searched and secured a flat to rent. John moved into the flat in the summer of 2015. He has a personal budget which is costing the LA £20k less than his previous commissioned placement. The family uses a local peer support organisation for payroll and employee advice and maintain the circle to continue to plan next steps.
At his last circle meeting John had set up a communal vegetable garden, which all people in the flats can access, and had started a shopping run for his older neighbours once a week.
John went from being an “over-energised vulnerable adult” living in a system, doing very little and getting frustrated, to being a valued tenant in the mainstream community and being an asset to that community with support from his state resource.
It cost less, it needed support from peers, and a local user-led organisation, and some initial intensive conversations to give information about rights and options under the care act to develop their own plan and take control to self-direct the support.