While they are still at primary and secondary school, children with an intellectual impairment are more or less included with their peers with the help of facilitators, the school staff and others involved. However, once they reach adulthood, these young people face a brick wall – there is literally nowhere else for them to go. Josanne Cassar speaks to ANABEL MIFSUD, executive manager of the Equal Partners Foundation, to find out more about this issue.

Imagine you have a child with intellectual impairment and, after attending a mainstream school up to Form 5, he turns 16... what’s next?

Well, for the time being the only option he has is to attend the Pathway to Independent Living Programme at MCAST, which is designed to teach these young people life skills and how to cope with the kind of things we take for granted (going to a restaurant, shopping, making a phone call, how to use money, and so on). But rather than being developed further, this course was first drastically (and inexplicably) reduced from two years to just one year, then it was closed down and, surprisingly enough, reopened this month.

But after that one year passes, what then? Is this young person expected to stay at home all day, watching TV? If his parents both work, does this mean he will be constrained to spends hours and hours alone at home, probably bored to tears? Have we included people with intellectual impairment as children in schools, stimulating them, urging them to be the best they can be, only to cut them off from society at the age of 16 because we simply cannot cater for their needs? Most of them can read, write and are computer literate, which means that they have learnt something useful at school, so why let them vegetate at home.

There are other considerations as well: as the parents of these children get older themselves, they become more concerned about the future welfare of their offspring. The nagging worry is always there at the back of their minds: what will become of their children if they are not sufficiently independent to fend for themselves?

These are the kind of unanswered questions that make Anabel Mifsud, from the Equal Partners Foundation, understandably upset.

While the proposal put forward in the pre-budget document raised some hopes as it talked about a three-year programme for students with intellectual impairment that will run from a mainstream post-secondary institution, it is extremely baffling that just recently the Ministry of Education has decided to offer a one-year programme – the Pathway to Independent Living Programme – for school leavers who have been assessed as having moderate intellectual impairment and who possess basic literacy and numeracy skills.

“This is just a one-year programme and therefore contradicts what was proposed in the pre-budget document. The document referred to the setting up of a three-year programme with a vocational address and an emphasis on independent living in the community. Is there an explanation why this programme has been reduced? What is more worrying is that this one-year programme is not inclusive; the students are going to be segregated in ‘their group’. It is also not clear what they mean by moderate intellectual impairment. They have to define clearly what they understand by this term. The programme is blatantly selective. One can still learn without knowing how to read, write, add and subtract. Are there any provisions in place for those students who do not possess basic literacy and numeracy skills? Besides, students applying for the course are being subjected to an interview that will determine whether they are accepted for the Pathway to Independent Living Course. What are those students who are not accepted going to do? This selection is discriminatory and thus illegal under the Equal Opportunities (Persons with Disability) Act (2000).”

According to Ms Mifsud, there are other loopholes in the way this programme has been designed.

“The success of the programme is being left open to possibility. It is stated, ‘The programme will explore the possibility, where suitable, of following modules in one of MCAST’s institutes’. Unless existing post-secondary institutions get down to providing adequate vocational opportunities for these youngsters, this possibility will never present itself. Presenting these students with tasters to savour different skills is just another detour from providing suitable post-secondary inclusive education for this population. We are very surprised that other organisations and the National Commission Persons with Disability have not contributed to the debate on the subject.”

In a country where we can debate for hours on seemingly trivial issues, it is disgraceful that such a crucial topic as this is being swept under the carpet.

Perhaps it is because they are not many in number (around 35 young adults per year in all) that persons with intellectual impairment are being overlooked, but this does not justify the fact that they are faced with no opportunities whatsoever, Ms Mifsud points out.

“Youngsters experiencing typical development already have a hard time finding a job when they leave school, so you can imagine how difficult it must be for someone who develops at a slower rate. This is why we have started fighting for this issue.”

The criticism levelled at the authorities seems justified. Originally, when the Pathway to Independent Living course was offered by MCAST, it was meant to be based around work placements and attendance for five days a week; however this aspect never materialised. It was reduced to attendance for three days a week, with no work placements. More hurtfully, for parents and the students themselves, it is segregated, unlike in primary and secondary schools where these same students used to be included.

“So, after years of advocating for inclusive education, are we pushing aside these youngsters in a segregated setting? Aren’t we noticing that we are unravelling all the work that has been done before? Does it mean that all the efforts made by the students, the parents, the educators and stakeholders at primary and secondary level have been wasted and were all in vain? Doesn’t all this reflect a waste of financial and human resources? According to the National Curriculum, all students should be provided with the best possible educational opportunities irrespective of their social background and abilities. While the government continues to invest in the education of students beyond the age of 16 by providing a whole range of opportunities, these opportunities are not readily available to youngsters with intellectual impairment. So what is the message being sent when it doesn’t invest in these students?”

The kind of post-secondary set-up the Equal Partners Foundation would like Malta to adopt is one where students with intellectual impairment are absorbed into the existing post-secondary courses at various levels, according to their ability. For example, in a hairdressing course, although some students might not be able to follow all the study units, most of them could be taught how to wash and dry clients’ hair.

This is not just pie in the sky wishful thinking either, for Ms Mifsud has seen this concept put into practice in Modena when a group of parents and professionals with the Foundation visited last February.

“In Italy, the educational structure is very different. The years between Form 3 up to sixth form are equivalent to their scuola superiore – high school. After the first two years, the school presents Social Services with a report that highlights the knowledge, skills and the aptitudes of the student. This helps identify the inclinations and the dispositions of the student and to decide on the percorso – pathway – the student will take up. In the third year most of the students with a statement of educational needs will start following a pathway, which alternates between school, work placements and workshops. They usually follow certain subjects with the rest of the class. In addition they are assigned to work placements and participate in school workshops. What is important to note is that school life plays an important part in the student’s educational programme and they are always in an inclusive setting. The students are continuously assessed, including their performance at work placements. At the end of the five years the students all receive a certificate that is recognised by the State. The most successful ingredient is the liaison between the different departments, health (neuro-psychiatry), the school, which takes on a central role, and social policy. The student usually has the support of a facilitator but at times receives additional support through a personal assistant and a tutor who is an older student, such as a university student, who follows the student inside and outside the school for a small remuneration.”

It really impressed Ms Mifsud to see this set-up succeeding in practice.

“These students might function differently cognitively but they are still youngsters who want to be around other young people and have a potential to learn and to contribute as adult citizens. On the basis of this visit, the wishes of our parents and the extensive experience of our professionals, the Foundation has drawn up a plan of action which sets out to provide students with intellectual impairment with meaningful inclusive post-secondary experiences and to support them towards their autonomy. We have just identified the ingredients that are working abroad and observed how it can work. We then explored how existing post-secondary institutions could become accessible for young people with cognitive impairment.”

The Equal Partners Foundation is proposing a two-phase project. The first phase would start in secondary school. It is a fact that as these students get older the differences from their peers become more apparent. Since at the age of 15 most students are usually preparing to sit for their ‘O’ level exams, most of the youngsters with intellectual impairment are left behind.

“We are proposing that at the end of Form 3, all students with a statement of educational needs are reassessed, not just for their academic skills but also for their community living skills, work related skills, communication skills and further training needs. What is being proposed from Form 4 onwards is that an individual transition plan is set in motion, which will include work experience placements, a stepping-out programme and participation in other school projects. At the end of Form 5 the student will be awarded a certificate for the Foundation Course in Social and Practical Skills.”

Phase one would lead on to phase two. Phase two will be based in a post-secondary institute of the student’s and parent’s choice. The student will get two years training in a particular field with the aim of employability and independent/supported living. The Foundation is proposing a five-day week linked with a one day a week work placement. After the first year the student would go on a summer work placement. The work placements will be assessed to form part of the student’s final certificate. The ultimate aim of this two-year post-secondary experience is to help these youngsters achieve autonomy and self-determination and to help them become productive members of society.

“We went to all the major institutions in Malta to talk about this problem, so we have created a lot of awareness. What we need now is for the authorities to take our proposals seriously and commit themselves to invest in lifelong education for these students,” concluded Ms Mifsud.

It may not seem like a major request, but for young people with intellectual impairment, it means everything.

Equal Partners Foundation is a parent-run, non-profit foundation supporting over 180 families who have a child with a disability and/or learning difficulty in the community. Each partner with the Foundation has an individual educational programme which may cover the following: initial consultation and psycho-educational assessments, early intervention for infants and young children, home support, support for inclusive schooling, a stepping-out programme to facilitate youngsters’ autonomy for their passage into the adult world and transition in the world of work. The Foundation does not receive any financial support from the government. Thus to provide its services it has to rely on the fees the families pay for the support, sponsorships, fund-raising and over 5, 000 hours of voluntary work per year. The funds the Foundation generates from fund-raising activities go towards alleviating the parents’ financial burden. Anyone who wishes to make a donation can do so on the following bank account number: 25013285001, HSBC Bank Malta, Lascaris Wharf.