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"The same as you?" Really! Even those with profound & multiple learning disabilities?

Muir and Ann Maxwell

In the year 2000 the Scottish Government reviewed policy and services for learning disabled people and set out a 10 year plan in a document called "The same as you?"  that would be executed by local authorities, social work and supported by the third sector. Many aspects of the plan are well intentioned and much has been achieved in the course of the last decade that is positive for some learning disabled people. 

A subsequent review, "The keys to life," published in 2013, acknowledges this but admits there is still work to be done.  The emphasis of "The same as you?" was on inclusion and person centred care supported in the community, with a clear intention to close all long-stay institutions and make direct payments available to families to enable them to source care when and where possible. There was also an ambition to get the learning disabled in to work. 

As a mother of an 18 year old boy with profound and multiple learning disabilities (PMLD), I have had on-going exposure to social services and the decisions made by local authorities. I am familiar with the system, such as it is, and I have fought hard and eventually won most of the battles along the way. Those battles, had they been lost, undoubtedly would have had a profound and adverse effect on our son's life and the life of his family.  Having read the document "The same as you?" I can now see clearly where the policies came from that have influenced many of the decisions that were taken over the last decade in relation to our son's care plan, both good and bad. Our local authority's reticence to support Muir's residential placement at Donaldson's College in Linlithgow, Scotland is explained by this document - a residential placement, that is also out of area, effectively flies in the face of Government policy as described in "The same as you?" It explains why so many families have been denied a place for their child at Donaldson's College either as a pupil or as a resident or both. Value for money has influenced these decisions too, as it should - but where social work and local authorities have failed is on proper and accurate assessment that enables them to clearly understand the requirements of those children and young people who have the most severe and complex needs. 

"The same as you?" and "The keys to life" have one glaringly obvious flaw in common - neither have a handle on the exact number of people in Scotland who have learning disabilities, and especially profound and multiple learning disabilities, nor can they profile those people.  All the numbers are estimates based on statistical population assumptions and the assumptions made in both reviews are not the same. The estimated numbers of people with learning disabilities are therefore different and interestingly, according to "The keys to life" (page 7), 2/3rds of children who require learning support in school disappear from these learning disability statistics in adulthood, which would suggest these numbers are wrong (page 6-11 "The keys to life"). I know I am stating the obvious by saying 'this simply isn't good enough." 

My greatest concern is that the most severely learning disabled, those with profound and multiple learning disabilities (PMLD) are largely overlooked in these reviews. "The same as you?" a document extending to 149 pages, devotes just one page to this group, stating that 66% of people with PMLD have epilepsy (making epilepsy a most severe condition) and highlighting just one example of good practice; training on the administration of rectal diazepam by the Scottish Epilepsy Society (now Epilepsy Scotland). Only one of 29 recommendations arising from the review is specific to this group and references (now very outdated) training for acute conditions such as epilepsy. This shocking lack of focus suggests that the most vulnerable group of learning disabled are seemingly the least important and the least understood. 

"The keys to life" devotes a few more pages (10) of its 178 page document to people with PMLD and admits there might be between 2,600 and 3,900 such people in Scotland whose needs are presenting a challenge to local authorities that so far have not been met and some 300 to 400 of these may require longer stay provision, including residential care or is it care homes? - these definitions are unclear. The review states (page 130) that "although it may be the case that community based services and specialist teams for people with learning difficulties are becoming increasingly more responsive to meeting complex care needs, there remains a challenge to strengthen local capacity and competence around meeting complex needs." Furthermore, it also says that such individuals are at risk of being placed out of area or even out of country, referred to in the report (page 128) as "a symptom of a wider systems failure which frequently includes lack of effective local commissioning and response....... the defining reason being a challenge to local authorities and health services which they cannot meet." 

Of 52 recommendations arising from "The keys to life" review, two are specific to this PMLD group (recommendations 51 & 52), with one more about residential care/care homes (recommendation 6). Recommendations 51 & 52 state that a working group will establish data on out-of-area placements and identify how to build the capacity to deliver services locally,  with a "home-coming" planned for all those people on out- of-area placements by June 2018. In the meantime, a scoping exercise will be carried out to identify public sector investment in high-cost care packages and explore opportunities for alternative models by June 2015, including self - directed support. The results of a review by Scotland Excel in this regard evidence a negative view of care homes and an ambition to move in favour of people living independently in the community. Ironically and inevitably, there is a noticeable lack of evidence and testimonies from those with severe and complex needs, most of whom have no voice. 

So are we making progress? Yes, we are making progress on promises of reviews but the outcomes will remain fundamentally flawed in the absence of accurate data on people in Scotland who have profound and multiple learning disabilities. Three to four hundred of out-of-area placements is not a true reflection of the need, when so many families are struggling to care for their loved ones at home with inadequate direct payment support. Some families are literally at breaking point. "High-cost care packages" along with "lack of effective commissioning and response" is the only part of these recommendations that I can "hand on heart" say they got right, evidenced by what I have personally witnessed in the last decade at Donaldson's College which provides pupils and residents with the highest level of support but remains largely empty because local authorities refuse to fund the placements until matters literally reach crisis point. 

Our son Muir has been a pupil at Donaldson's College since he was five years old (an early battle). He had a delayed entry to school and spent his first year in the nursery. He became resident age 12 (a battle that took me 18 months to win) and he will remain at Donaldson's until he is 19 years old (another battle I had to fight). In that time he has positively thrived at this wonderful school, with high level support from outstanding carers which I fought for and subsequently have had to fight to keep. Donaldson's is his second home and he has many, many long standing friends amongst both the pupils, the classroom staff and the carers. He has had the most fulfilling experience and he is, as a result and without doubt, in an excellent place. The Mansell Report (referred to on page 128 of "The keys to life") says that "early intervention, sophisticated long-term arrangements for management, treatment and support will prevent problems arising in the first place." Muir is a shining example of this outcome but when he leaves school in 2016 he is facing an out of country placement at Young Epilepsy (which I fought for in the absence of anything suitable in Scotland), a fantastic college facility in the south of England that is sadly far away and therefore we now fear for his longer term emotional well-being. 

And so I say to Scottish Government, you have all the answers in front of you. None of this is rocket science. The Donaldson's model and a few others that are similar, work.  I would urge the Government to support schools such as Donaldson's with significant public sector investment and encourage local authority placements for children and young people at both the school and in residence whose complex and multiple learning disabilities have been accurately assessed, at the earliest possible point of intervention - and then, go one step further and replicate the service provided to children for adult services, in partnership with organisations, like Donaldson's, which are already delivering. They in turn will be the feeder for this high- end residential care with respite for those families who need it. 

If you doubt my testimony then I would direct you to the Care Inspectorate whose recent in depth review of this outstanding school served only to highlight that transitioning from a school for deaf children to a school for children with severe and multiple learning disabilities, which has been necessary,  has not only been challenging but also under supported because local authorities and social work have failed to recognise that these children are not "the same as you" and they have been largely placed at Donaldson's College in crisis, following a tribunal. 

Scotland desperately and urgently needs sophisticated high-end residential care for some of its children and young adults with complex and multiple learning disabilities. Families who choose to care for their profoundly learning disabled relative at home supported by direct payments also require such a facility for essential respite.  "The keys to life" (page101) acknowledges that "the key issue is good communication with family and carers.... and respecting their knowledge and experience." 

I am speaking as a mother who knows and I hope you are listening.

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