Alternatives to Post-16 Specialist Residential Educational Settings

In this article, Sharon Smith discusses systemic issues within the SEND system that limit the opportunities available to Young Disabled people and cause barriers transitioning to higher education and employment

Some of these issues were previously raised in the summer edition of Inclusion Now magazine, where participants in ALLFIE’s Our Voice project were critical of the Government’s apprenticeship system:  The Exploitation of Young Disabled People Transitioning from Education to Work.

Our Voice described how there isn’t enough public awareness about the barriers Young Disabled people face within the education system and employment.  Members emphasised that they do not have equal chances within the field of work and are denied meaningful work opportunities. In this article I will discuss both education and employment, to continue the conversation.

Last week, my 19-year-old daughter Tanzie’s best friend left for specialist residential college. This is a story of two Young ladies who have Down’s syndrome, who have been best friends since they met at approx. 18 months old. They are so close that they call each other ‘sister’. The fact that her closest friend is moving away during term times for three years will be a huge loss to my daughter. She is already missing their regular long chats at weekends and in the evenings, and is having to work out what a long distance friendship looks like. Her ‘sister’ is not her only friend who has started a specialist residential college this year; two other friends started earlier in the year. All these three-year placements were secured after lengthy SENDIST tribunal appeals led by their parents.

Whilst I am in no doubt that this residential placement will be a huge success for my daughter’s best friend, who throws herself into every opportunity that comes her way, the fact she will not be in our lives as much as she has been has led to me reflecting on how the current further education/post-16 landscape is simply not offering many Young people who have Down’s syndrome or similar learning disabilities the opportunities that they need to thrive and to develop independence. And this comes at a great cost to local communities, as Young Disabled people move away to live in a separate specialist setting, often hours from home, only returning to their local communities during the holiday periods. These Young people are not engaging in social or leisure activities in their local communities, they are not working in local businesses, they are no longer present or visible for much of the year. This makes me wonder why we cannot foster more inclusive opportunities for Young people, within their local communities, whilst encouraging greater independence and individual aspirations.

The purpose of this article is not to point the finger at parents. Having spoken to several parents who have challenged the local authority to secure a residential placement for their Young person, they clearly have done so because of the incredibly limited post-16 offering in their local areas. When their children attend college locally and are mainly provided with worksheets, colouring and word searches, parents conclude that such residential specialist education is the best (or maybe only) option for their Young person. Residential education settings provide a safe opportunity for a Young person to learn skills for independence and the workplace, and to spread their wings. Parents often argue that non-disabled Young people get to go to university for three years, so why shouldn’t their Disabled child have the chance to move away from the family home too?

Although the SEND Code of Practice (January 2015) states that:

“Where young people have EHC plans, local authorities should consider the need to provide a full package of provision and support across education, health and care that covers five days a week, where that is appropriate to meet the young person’s needs”

And goes on further to state that this five-day package can include non-educational activities such as:

• volunteering or community participation
• work experience
• opportunities that will equip young people with the skills they need to make a successful transition to adulthood, such as independent travel training, and/or skills for living in semi-supported or independent accommodation, and
• training to enable a young person to develop and maintain friendships and/or support them to access facilities in the local community

this rarely happens in practice, unless the family have been persistent.

We were one of those persistent families. Tanzie did not want to go to residential college, as she wanted to stay close to her friends and family and to continue engaging in the local activities that she enjoys, so we needed to find a way to ensure that she could secure the skills, confidence and experiences she would need to be successful in adulthood, but within her local community. We wanted her to be able to develop self-advocacy skills, to learn how to be live and work in her local community, and that she would be supported to achieve her personal goals and aspirations. We had to appeal via the SENDIST tribunal to achieve this, which was an unnecessary and very stressful experience. It would be better if local authorities had a range of pathways and opportunities available for Young people, that can be put in place without the stresses of a tribunal appeal. My daughter could not appeal to SENDIST without our support, meaning that it had an impact on the whole family.

My daughter now has a five-day package which includes 3 days in one setting and 2 days a week in another. Her package provides some bespoke activities that have been included specifically support her to develop life skills and independence, for example travel training support. Importantly, for us as a family, this is in her local community and does not require her to move out of the family home, something she doesn’t feel ready for (yet!). She also has travel training provision, that is flexibly provided in the college holidays, to ensure she is learning and rehearsing skills on travel routes that matter to her, ie to the local bowling alley or to the next town where her ‘sister’ lives.

Outside of education, she also has secured a paid part-time job working as a sales assistant through the Down’s Syndrome Association WorkFit programme. For the last 18 months, she has worked 6hrs a week on a Saturday at H&M and is loving this role and the money she is earning. This is giving her vital skills that will be valued by future employers, some financial independence, and she is working in her local community. My daughter can experience part time work alongside her studies, meeting new friends and engaging with store customers. She is thriving. Having won store and Area employee of the month earlier this year, she has been invited to two events in the coming weeks where she will meet other regional winners, and will have an opportunity to make a presentation to them about her role at H&M. She is very excited indeed. Unfortunately, similar opportunities for work are not always available to Young Disabled people. This needs to change.

We have further sought out opportunities for her to engage in developing her self-advocacy, disability advocacy and peer support skills. To date, she has helped to design and deliver training for professionals, spoken at an education conference and met her local MP to discuss her work experience at H&M. This is only the beginning for her, I am sure.

My daughter’s package of educational activities only came about because of our persistence and lack of acceptance of the 16hr a week course that was on offer, spread across 3 days per week. We demanded that she was provided with opportunities to gain the skills she needs as she approaches adulthood and as she shapes her own life and makes her own decisions about her future. We have had to challenge the local authority via the tribunal process, which was emotionally draining and time consuming, and we have had to actively seek out other opportunities through national charities such as the Down’s Syndrome Association and NDTi because they have not been available locally. But it should not be down to the parents to have to do this.

In conclusion, the post-16 landscape needs to be more aspirational, more creative and more flexible, to better support learning Young Disabled people to achieve their aspirations and hopes for the future. There needs to be a wider range of courses on offer, that suit the individual interests and goals of Young Disabled people, as well as person-centred planning and support, tailored and individualised careers advice and meaningful work experience (with reasonable adjustments as required). Learning Young Disabled people need to have the opportunity to shape the services and support that are available to them, which means more opportunities are needed for them to learn self-advocacy skills. They should be able to do this in their local communities with friends and family, engaging in leisure activities of their choosing, supported by an educational package that recognises their abilities, interests and desires as they move towards greater independence and employment.

Article 19 of the UN Convention on the Rights of Persons with Disabilities (UNCRPD) recognises ‘the equal right of all persons with disabilities to live in the community, with choices equal to others’ which requires States to ‘take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community’. It goes on to detail how Disabled people should have the opportunity to choose where they live, have access to the support needed to support living and inclusion in the community, and to prevent isolation or segregation from the community, and community services should be responsive to their needs. This requires educators, local authorities and employers to have a greater vision, to think flexibly and creatively about how to support greater community inclusion, rather than to stick with the current limited opportunities available to so many Young people today. How do we move forward to reach this point?