Why I Fear for my Daughter

A recent article in The Spectator magazine clearly highlights some of the many worries parents fear when looking at their children’s futures within adult social care in the current climate.  “Why I fear for my daughter” written by Ross Clark talks through some of the harsh realities that parents face such as budget cuts, funding allocation, transition and supported living vs. residential care. There is a particular reference to the Winterbourne View case, recently shown on the documentary programme Panorama, which is notable to read as it highlights the undeserved negative connotations residential care has received as a result of the horrific findings at Winterbourne. Click on the following link for the full article.  http://www.spectator.co.uk/features/8875411/why-i-fear-for-my-daughter/

It is a harsh reality we are faced with in adult social care, whereby supported living placements are promoted above residential care settings, and providers “in-county” are promoted primarily before considering any “out-of-county” placements.

Whilst this is in line with policy to keep placements local, too often the real reason is purely budgetary, as outlined in the article above. Even though the ideology behind the reasoning seems viable for adults with learning disabilities to have the opportunities to lead a life like any other, it fails to recognise that a large majority of the learning disabled who have very high support needs are only capable of living independently within a supported living setting in name only.

These individuals are too vulnerable and require full time residential support and fall through the gap within this obsessed ideology; often leading to broken placements, lack of continuity of care and possibly living back at home with mum and dad. With the issues of on-going funding cuts within adult social care, many day centres and respite care facilities are being closed leaving individuals currently living at home (or within supported living) with fewer options to have active days and fulfilled lives, so making it harder for parents to cope.

For more complex individuals, two fundamental issues standout in respect of supported living. Firstly, there are the cost implications involved; it costs more to provide high levels of quality care within a supported living setting than it does in a residential one. There are fewer opportunities to share facilities or services for the residents, as it is all costed and provided on an individual basis. Should an individual encounter a “bad day” in terms of either challenging behaviour or health implications, it is unlikely that the extra resources required on an immediate basis will be available. It costs extra to provide staff to cater to these additional, fluctuating needs – costs which the Local Authority does not budget for. Specialist residential settings have a level of critical mass of staffing (and management resources), which offers a degree of flexibility to support individuals on a bad day, beyond their budgeted care hours. This avoids placement breakdowns and still higher cost implications for the Local Authority.

Secondly, there are the isolation implications within supported living. When a young adult transitions from an active school or college schedule into a placement where they are living on their own or with inadequate contact with their peers, this limited interaction can cause isolation and result in increased challenging behaviours, which are often a statement of unhappiness.

If this is sounding complicated, it is because nothing is clear cut in care. Apart from the issues touched on above, there is the bigger issue – the fact that there are good and bad services in all types of provision, further undermining the stereotypical approach. At this point we must declare our interest as parents who took matters into our own hands by setting up Home From Home Care, because of the absence of what was suitable for our daughter Laura.

When looking at placements it is important to consider the social aspects involved for your child, as if they are more complex, we believe that the ideal is being part of a micro-community. Micro-communities should offer different living options, so that people can live in a group of one, or two or more, depending on what suits them. This effectively mirrors what happens in the wider community, with the opportunity for individuals to come together to socialise and share activities. Together they form a community of individuals which is made more dynamic by their differences, which avoids an institutional approach to care.

Central to the success of the micro-community is the staff team. Active and less active individuals of the community require a more dynamic mix of staff – those who are more motivated to support them in activities and inclusion in the wider community, with others more motivated towards providing personal care. This holistic approach to skills and personalities, feeds the atmosphere of the micro-community; where needs, compatibility and interests, as in the wider community, tend to surpass age differences. Again, as in the wider community, a range of property options (with tailored care) creates pathways for progression.

For these individuals, it is unlikely that there are suitable provisions available in every county, as of necessity, a minimum number are necessary to enable high quality and sustainable services to develop. No single Local Authority would have enough individuals to justify such a service, as it will only cater to a very small minority of their population. So, using the policy argument, Local Authorities instead promote alternative services such as supported living.

So herein lies the issue; too many individuals are being inappropriately signposted into a supported living setting which is not suitable to their needs, rather than being referred to appropriate residential providers, which might well be out of county. Placement breakdowns then occur which can be extremely distressing for both the individual and the parents and families who then have the added stresses of finding replacement provision. And too often, the new service is at a premium cost to what it would have been if an appropriate service had been selected in the first place.

The power should ultimately be with the parents to decide where their child is placed, not decided by the Local Authority. If your child is more complex and would not suit a supported living setting, it is up to you to inform yourself and research the options. It may seem that going against the system is not a viable option; however you are within your own rights to find the right support for the needs of your child. If there is no appropriate residential provider on your door step, keep an open mind. Look at all the options, make an informed decision and fight hard; it is possible to gain funding for the right support.

And remember – whether it is a supported living or residential service that seems appropriate, there are both good and bad services…

If you are a parent currently going through transition, please read our “top 10 tips series; 10 questions for care providers” for more information to help in the transition process. https://www.createdbyparents.com/?page_id=88

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