“Letting Go”

I braced myself yesterday for the new Rosa Monckton Documentary “Letting Go”  I was hoping that this one would give a more balanced view than her previous programmes. I began to lose hope when I heard her on radio 4’s Woman’s Hour and then spent the duration of the programme shouting at the Telly… “NO Rosa, There is another way!”

The parents and the young people taking part were lovely folks. They clearly had their kids best interests at heart (including RM). Their experiences were very real and their concerns and worries are echoed by thousands of families across the country.  As someone who has gone through this stage with my own son I know only too well, that fear for the future and that “lost in the system” feeling. I also know that with the right approach you can get a good life for people like G.

The programme was also factually incorrect. You don’t need a diagnosis to get social care service, this should be needs led, a vulnerable adult is a vulnerable adult whatever their diagnosis and even if they don’t have an official label or named syndrome. This needs correcting because it will put so many people off asking for social care support (and let’s face it you do have to ask because they don’t always come knocking!)

Whilst highlighting the difficulties she largely only focussed on the negative, offering no alternatives to “independent living” or staying in the family home. It failed to show the positive things that can be and have been achieved for so many and offered no solutions to peoples difficulties (I could personally think of a number!). At best it highlighted what can go wrong, at worst it confirmed the fears of so many already frightened families. Perpetuating the view that there is a black hole in adulthood, and the only people who can “care“ for their relatives well are families. There was no mention of the personalisation agenda, person centred planning or circles of support and no examples of where someone had moved out of the family home and were now leading a good life. No mention of some of the excellent support providers out there who are doing some great work to support people with learning disabilities. All this would have given families much needed hope for the future.

I was approached for this programme sometime ago. I hesitated anyway because of the negativity in previous programmes but it turned out that G’s story was too positive anyway and they already had positive stories, they wanted a balance….Er where was the balance?

If I was a parent going through this stage now I would have watched this and have thought, well over my dead body will my son ever leave home. If I was an older carer still supporting my son, I’d be even more terrified of what would happen when I was no longer there to support him. This is something all of us think about and the fear of abuse never really goes away (nor should it, we still all need to remain vigilant!) The idea that you’d be so frightened you’d rather they died before you, or worse take them with you, is one I’ve heard lots of times from parents and at one time could relate to. But G is his own person, he doesn’t belong to me, he deserves a good and happy life in his own right and it’s up to us as his family to do everything in our power now to ensure he gets it.

Luckily I was inspired by other families years ago to find out what G would want to do with his life and using his personal budget we were able to successfully get him into his own home, with 3 other people who, had he been able to tell us, we think he would have chosen to live with. He has full time support provided by a fab support provider. We are still very much involved and part of his life without having to do the day-to-day support. He lives about 20 minutes away from us in a “normal” house in a “normal” street and he comes back to stay with us for the night every other weekend. He’s happy to come back home to see us, but equally happy to go home to his house, handing me his shoes and picking up his case as soon as we mention going. He has a busy life, a great house and people to support him and he still has us… and when we’re gone he’ll still have his sisters and his cousins. We feel we’ve made the right decision for his future. I don’t feel we’ve let him go though. I don’t think we ever really let any of our children go but we have to let them grow (sorry bit corny!)

Back view of his house, now has hot tub, more flowers and a trampoline

 bedroom,  with telly, sofa (not shown) and big pic of himself sailing

                             

                           Out and about having fun with friend and support staff!                                           

 

The only good bit in the programme for me was Jack and his mum. When RM suggested the “lovely” residential care home in their own community, Jacks mum didn’t think it was right for Jack (we’d already heard him say how bored he was with the village) Jack’s mum was being person centred and even though it could have been a solution for her and would have kept him close, she knew it wasn’t right for Jack. Yeah Jacks mum!!

Of course the very worst thing about this programme is the power and influence people like RM have. She has the ear of David Cameron and from what I understand she has been advising him and the Government and when you realise this it all seems to make sense and fits neatly with the Government’s agenda. Her outdated views and misguided opinions are dangerous and damaging. They belong in the last century, hark back to the days when people thought that those with learning disabilities belonged in residential care, “special, segregated communities” or worse long stay hospitals and institutions. The language she uses throughout support this…“care packages”, “residential home”, “care in the community”.  It’s like Valuing people, personalisation, choice and control and the last 10 or so years just didn’t happen! For someone so intelligent and involved I have to wonder where she has been!

I’m not saying for one minute that experiences like this shouldn’t be seen by the general public, but it needs to be balanced with some positives too and those delivering such programmes should be trying to help families not compounding their worries. It undermines the work that many of us are trying to do… and it will be up to us, not them, to pick up the pieces. So thanks for nothing RM you’ve just made my job a hundred times more difficult!