Hugo de Savary's – living with learning disabilities.

Unfortunately the blog has taken a back seat recently due to a mad schedule of finding myself all over the UK at ‘transition events’. These are held at specialist schools/colleges – their aim is to present the different options that exist post 18 for their students.  I’ve had the privilege to meet some truly amazing people and many have stuck in my mind. At one there was a formidable lady looking for the next step for her foster son who is 16. He’s lived with her for 4 years and prior to that, he had over 30 foster placements that had broken down and been to 15 different schools. It later transpired that she had 3 other foster children as well as her own child all with learning disabilities – she was adamant that she was going to do her research and not settle for second best for this young man.

I have to say these events are draining as many parents have a ticking time bomb on their hands. In the majority of cases, the children at these events will leave college this summer term and nothing has been put into place for this next step. This could be due to several reasons, lack of continuity between different social workers, children being lost in the bureaucratic system or simply exhausted parents who are in a semi state of denial about the current situation. Ideally the best time to be dealing with this is from the age of 14-16, so as to give plenty of time to assess the different options available, enabling the final decision to be fully informed.

You might be thinking, what are the options? There are literally hundreds of local authority websites that deal with this issue from a common governmental perspective, so there is no point in me repeating what they say, but as a parent if you are going through this daunting and complex process there is very little other information with warts and all out there.

So, I’ll try and compile a very simple guide built upon the things that I’ve learnt through parents and professionals that might help. This however must be used in the following context that not one size fits all…these are all individuals, that have varying levels of needs. This means that what might work for one individual, might not necessarily work for another. Sometimes, it’s not always obvious what all these needs are, for example parents have a certain assumption of what their child can/can’t do, but often the reality can be very different outside the parental sphere etc.

1. Stay within the parental home with some outside support provided.

This is very personal, quite a few of the parents I have met like this option for the obvious reasons that their children are at home – others couldn’t think of anything worse and want their children/now young adults to lead as an independent life as possible, away from them and in most instances their children feel the same way, I know I did when I left home!

With a personal budget provided by the Local Authority, external care can be purchased from a number of agencies/providers or can be organised direct – this budget is determined by an assessment of their required needs which I’ll touch upon later.

The arguments against this approach:

- The child becomes dependant on ageing parents

- Dependency on the agency to maintain quality and to be still around in the future

- If agency is not the preferred choice then the onus is on the parents to employ staff directly with implications of recruitment, training, HR and payroll all not to be sniffed at, especially if the individual requires a lot of support.

2. Supported living

This is essentially when the young adult becomes a tenant of a flat or house, probably through a housing association, with the support/care is provided by external providers on an adhoc basis. Local authority social services tend to prefer this option as part of the funding required is provided from an external budget – housing benefit. This works well for a lot of people who don’t have high support needs and can be used in conjunction with a personal budget.

The arguments against this approach:

- Cases of loneliness and bullying

- Dependency on the housing association to be a good landlord

- Dependency on the agency/provider to maintain quality and to be still around in the future

- Lack of management in terms of staffing, care plans, continuity and crisis management.

3. Residential care

This is when people live within a care home and are supported 24/7. This is more suited to those who have high support needs; vulnerability; medical conditions. Local authorities’ least favourite due to it’s cost. Funding is  postcode lottery meaning that policy dictates that you have to look within your local authority’s area, if the facilities within the area can’t meet the individual’s need, but the needs can be met out of county, then a battle inevitably has to take place to get funding.

The arguments against this approach:

- Potential for institutionalisation

- Dependency on the care provider to maintain quality and to still be around in the future

The needs lead assessment

When this assessment is undertaken by the local authority, many parents seem to be embarrassed about some their children’s needs and will dumb them down – I guess this is pretty natural as everyone wants to talk their children up – me included! However in this instance it’s fundamentally important to state the true needs, so that they can be appropriately identified and funded accordingly. All too often many placements breakdown, causing irreversible damage, due to needs that were more profound than originally anticipated in the assessment.