Living life to the Max

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Young people with Down syndrome can be independent and contribute to society

There has been a great deal of controversy recently over the UK Government’s proposed introduction of a new non-invasive prenatal test (NIPT) for Down syndrome and other conditions. The NIPT is a blood test that boasts a detection rate of 99 per cent. Such comprehensive screening is projected to result in a profound increase in the number of children with Down’s syndrome screened out by termination.

The response from many families and Down syndrome support groups has been directed via the Don’t Screen Us Out (DSUO) campaign which has received a great deal of attention, particularly since the actor Sally Phillips lent her support and her documentary, A World Without Down’s Syndrome, aired on the BBC (5 October 2016). The documentary has, however, been strongly criticised by one of Britain’s leading antenatal experts, Jane Fisher, who believes that the programme “could make the pregnancy dilemma more difficult” and that it was “not at all helpful” to people facing difficult decisions around a prenatal diagnosis of disability.

My own view on the screening debate probably lies somewhere between Phillips and Fisher; I am certainly pro-choice and I believe that choice should be informed. Screening equips women with foreknowledge, not advice. The greatest challenge lies in changing perceptions and assumptions around the value of disabled lives.

In an article printed in the Guardian (2 October 2016) Fisher is reported as voicing the concern that “Not only does no one know how their child would be affected by Down’s, but the big conflict for women is the adult the child will be 20 or 30 years down the line. For most women, that is the bit that tips them to end the pregnancy. An adult who will be, at best, vulnerable”.

Small steps

It is relatively easy to find positive images of children with Down syndrome but there appear to be far fewer adult role models with the syndrome. This is hardly surprising when you consider that it was not until 1971 that the rights of disabled children to an education were formally acknowledged and later, into the 1980s, that mainstream schools were required to teach pupils with SEN. The 1990s saw further formalisation of the educational rights of disabled children, with a more rigorous definition of provision, identification of resources and specific support being detailed in the 1994 SEN Code of Practice.

Another highlight of the 1980s and 90s relevant to the development of children with Down syndrome was the establishment of Down Syndrome Education International in 1987 by Professor Sue Buckley. Professor Buckley has long been an advocate of early intervention for children with Down syndrome and her research has been instrumental in enabling children with the condition to achieve their academic potentials. It seems reasonable then, given this recent timeline, that positive outcomes for adults with Down syndrome are really only just emerging. As the next generations of children with Down syndrome reach adulthood I think that we will be overwhelmed by their achievements, their contributions to their communities and their value to society.

Getting it right

My son was born in 1994 and is now 22.  As a young adult, he represents one of the first cohorts of children who benefitted from the educational provision outlined in the 1990s.

Max completed his final year at college this summer. He is now working, managing to juggle four different part-time jobs on a voluntary basis. Max was fortunate to have accessed a number of work placements during his time in college and this enabled him to decide his vocational pathway based on experience of different options. He found that his most successful placements have been those working with young children – a career which makes valuable contributions to his community as well as enhancing his social inclusion and his “presence” in the local area. He works in a day nursery, a village after-school club, and a soft-play centre. Staff and parents have nothing but praise for his commitment and his positive interactions with their children. He also hopes to use his experience from one of his placements (with Kirklees Young Enterprise Group), where he designed and printed his own T-shirt and mug designs, to support the local school in developing their own enterprise project.

Max’s successes have been largely down to the outstanding educational provision he received, particularly post-16. The historical timeline for SEN educational provision suggests that post-16 courses should have been expected to begin responding to the higher attainments, increased inclusion and greater aspirations of children and families in the early 2000s. However, when Max and I started looking at post-16 courses in 2010 we found that the majority of further education colleges were very segregated and placed SEN departments in entirely separate blocks away from mainstream peers, with extremely limited opportunities for social inclusion. Indeed, the first course Max applied for on leaving school was referred to as an “employability” course, but had no opportunities to access external work placements and a zero percent success rate in moving young people into employment.

The implementation of the internship model has been revolutionary for young people with learning disabilities and Max was fortunate to attend New Bridge Learning Centre in Oldham, where the Bridging the Gap project was one of the first internship courses in the country, being introduced in 2010. The internship model provides education in partnership with employers and allows young people to develop independence, life skills and employability skills in real work placements on a full-time basis. Max began his internship at the age of 18. What was equally important was the preparation for this – his earlier two-year course focusing on the essential skills which form the basis for readiness for work, such as developing a sense of responsibility, organisational skills, avoiding dependency on staff and appropriate social interaction in different contexts.

Skills for adulthood

To follow are some of the key factors that supported Max in his readiness for work and preparation for adulthood.

Independence and living skills in practical contexts

This focus began for Max in childhood. He was always keen to access the same opportunities as his brother, so this included playing out with friends (away from mum), going to the local shops, riding his bike and catching the bus. Parents need to be brave but also well-prepared. Risk-taking needs to be balanced with careful coordination. I used to telephone ahead to the shop to alert them that he was on his way and then follow on, hiding behind bushes. This progressed to watching him to bus-stops and then tracking him in the car. Nowadays, I can find him by using an app (but more about technology later). Similarly, I was always careful to expect Max to participate in daily chores and take responsibility for himself as far as possible. Life skills can’t be taught in classrooms, they need to be part of life.

Recognising the challenge of social inclusion in adulthood
Unfortunately, for many young people with SEN, the move from school to college continues to feel like a step backwards. Young people are leaving mainstream secondary schools only to “progress” into segregated courses. Options are limited; while mainstream peers choose courses based on subject preferences, young people with learning disabilities often have a limited choice of “life skills” or “work skills” options, with little reference to talent or ability. Thankfully, many providers are responding to this challenge by providing more subject specific courses at entry levels and by accessing the wider community via internships.

Applied functional skills
The phrase “plateauing” is frequently used about children with learning disabilities. An example of this for Max was in maths; he could not get his head around telling the time using an analogue clock face. His Year 11 teacher seemed to be very concerned about this and had committed many hours to sitting in front of Max with a clock face moving the hands. I encouraged him to throw the cardboard analogue clock to one side; if Max hadn’t grasped it yet, he really wasn’t going to. It wasn’t relevant to him. Instead, we set up alarms and reminders using the digital clock on his mobile phone and provided instant relevant positive reinforcers. He very quickly developed his understanding of time and now uses the digital clock on his phone to organise his diary. This is just one example of adapting the curriculum and delivery to ensure that learning is relevant and applied to real and useful contexts.

Keeping up with technology
Max’s smart phone is his lifeline and his most useful tool in developing independence. ICT in the curriculum keeps changing in terms of its identified priorities, but for pupils with learning disabilities I would always argue that ICT has to be cross-curricular and absolutely top priority. Max was always a good reader, but struggled with spelling; predictive text resolved that for him. As already mentioned, his use of a digital clock and calendar have become central to his life. Max can also manage his finances using an app.

His ability to communicate is important; not only can I track him if necessary, but he can get hold of people via a call or text very easily. When he first started going out to places independently he was impatient with me asking him to text me when he got there safely, so he got into the habit of quickly taking a snapshot and sending it to me so I could see where he was and who he was with.

Employability skills in real work placements

Max would never have been able to move from a college course into the kind of work he is currently doing without extended opportunities for work experience. He has developed commitment, responsibility, stamina and an expectation that he should work and contribute to society.

Making a contribution
Max has also left home and has his own flat. To return for a moment to Fisher’s concern, and the idea that an adult with Down syndrome would be a burden as he continued to be dependent on his family into old age, Max has completely defied this prediction. I would also argue that Max is not a burden on the state.  As his work is voluntary, he does receive out of work benefits. However, given that the unemployment rate for 16 to 24 year olds not in full-time education is currently 12.1 per cent (June to August 2016, House of Commons Library) and that Max is actively contributing as well as building up his experience and his CV, I would argue that his working for free goes some way to counterbalancing his receipt of benefits alongside his non-disabled peers.

Max lives a happy, fulfilling life and touches the lives of many. He is popular and active socially. I feel that he represents the future for young people with Down syndrome. Aspiration is the key and there is an increasingly positive outlook for parents who give birth to a baby with Down syndrome – an expectation that their child will enter into adulthood with greater independence and wider possibilities than ever before. It is crucial that educational provision keeps up with this vision.

Further information

Sarah Lockwood is a parent, teacher and member of Huddersfield Down Syndrome Support Group:
www.hdssg.org


Down syndrome
parent at Hudds Down Syndrome Support Group HDSSG

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