A lot of people with learning disabilities in Malta are restricted in what they can do, because their families fear for their safety. Isabel Bonello and Anne-Marie Callus examine the causes and consequences of overprotection and what can be done to address it
Worried families are being overprotective, which is limiting the independence of people with learning disabilities in Malta, our research has found. We carried out an inclusive research project, with Anne-Marie Callus as the main researcher and Isabel Bonello as the co-researcher, who chose the subject of overprotection. This was because a lot of parents fear letting their adult children with learning disabilities go out on their own. Even at home, they are afraid of letting them do things by themselves, such as cooking or using the washing machine. Ten focus groups were held: three with people with learning disabilities; another three with parents of people with learning disabilities; and four with staff who work with people with learning disabilities. We asked them about work, going out with friends, intimate relationships, public transport, managing money and using mobile phones.
Work
Work is important because it allows you to contribute to society, learn things, meet people and earn money. Some people in Malta with learning disabilities work full or part time. Many others attend day centres, and some stay at home for most of the day. Several things assist people to find a job and keep it, such as being able to keep their disability allowance even when they work and having job coaches paid by the government to help them learn how to do their work. Making employers have a minimum percentage of disabled people on their staff also helps. Some people with learning disabilities are happy with their job but others have problems, such as being given repetitive tasks, having a good relationship with supervisors but not with some colleagues, or not being given enough support to learn how to do a job well. Issues like these can mean they have to stop working.
Another problem is that people can be placed on a training programme but, when the funding for the scheme stops, they are not kept on by the employer. Some people with learning disabilities never manage to get a job because they do not find one that is suitable for them. Also, some parents think their sons and daughters are not capable of working or that they will not be treated well if they do. Employers may be willing to employ people with physical disabilities but not those with learning disabilities. Finally, people with learning disabilities may not be able to use the bus on their own nor have any other means of getting to and from work.
Social life 
Going out with friends is important for everyone. You can interact with other people, enjoy yourself and be more independent from your family. A few people with learning disabilities in Malta do go out on their own. They know how to use buses and meet friends. Others are able to travel by bus but do not have friends to meet, so they only go out with their family or for activities run by voluntary groups they belong to. Some people do not go out because they cannot use the bus or do not have enough money to spend while out with friends.
Many parents would like their daughters and sons to go out, but worry if there is no one to take care of them. They also worry when they go out with someone who is not employed to work with people with disabilities. On the other hand, if there is a person in charge they trust, parents allow their sons and daughters to go out. Very often, it is parents who make decisions on socialising. People with learning disabilities would like to do the same things as others of their own age. They like going out with people with learning disabilities, but sometimes do this because they have no other choices. They do not always find different people to go out with and, when they do, others do not always treat them well.
The research participants said people with learning disabilities need support to be able to go out, and that society needs to accept them. In this way, they can be included.
Intimate relationships
If a person with learning disabilities wants to have an intimate relationship, it is important that they are given the support they need to do this. Having a boyfriend or girlfriend means having a special relationship with one person, and it helps individuals become more independent. People with learning disabilities do have partners. Some meet each other regularly, but others meet only at the day centre or when a voluntary group organises an activity. Many of these relationships are not taken seriously by others.
However, there are also parents who are supportive. One father said he and his wife would like their son to get married but his girlfriend’s parents do not want this. One mother said they gave their son a lot of support to be able to meet his girlfriend. For example, since he cannot tell the time, if he is going to be alone in the house when it is time for him to meet his girlfriend, his mother sets the alarm for him.
Using public transport
Being able to use the bus is very important because it allows people to go to work, visit different places and meet friends. Some people with learning disabilities use the bus on their own. However, many do not, and can find it difficult to learn this skill. There are parents who do not want their adult children to be on the bus on their own because someone may treat them badly. One mother mentioned that her son forgets to get down at the bus stop that he needs. Then he gets lost and finds it difficult to tell his parents where he is. For this reason, he can go out in his neighbourhood on his own but, if he wants to go further, one of his parents or his sister gives him a lift.
Managing money
Being able to manage money allows people to buy things they want and save for the future. Some people with learning disabilities use money on their own, but many need help because they do not understand the value of different notes and coins, or because they cannot check change. One mother taught her daughter how to use a debit card so she does not have to check change. Another mother said her son likes coins because they are heavier and he thinks he has a lot of money. One person with learning disabilities said he preferred having his dad going with him to the bank because he does not understand everything. Others said their parents gave them enough money, but some said they were not given enough.
Mobile phones
Mobile phones are an important way to keep in touch with family and friends. Many people with learning disabilities use them, but some have a mobile phone only so that they can contact family members when they go out with friends. In some cases, parents call them a lot when they are out – and people do not like this. One person said, when he is out with his girlfriend, her mum keeps calling. Some people phone their parents once when they are out, just to let them know they are fine.
Lessons from the research
There are many things that can be done to avoid overprotecting people with learning disabilities. First and foremost, people with learning disabilities should be treated with respect, and they also need more support from personal assistants so that they can go out more often and do what they would like to do. Parents too need support so they do not wrap their adult children in cotton wool. Our research found that there are parents who find ways of supporting their sons and daughters to do the things they like to do. We believe that it is the right of people with learning disabilities to be as independent as possible. From this research, we learnt many people would like to do more things on their own. It is clear that to become independent, people should be given support to learn how to do things on their own, such as housework, managing money and using the bus. If they could do these, they would not need to depend on their families all the time.
● For more about the research and to download the full Inclusive Research Project About Overprotection in the Lives of Persons with Intellectual Disability in Malta report and an easy-ready summary, visit https://tinyurl.com/ybaywgag
Isabel Bonello is an office support worker at the Commission for the Rights of Persons with Disability. She delivers talks about self-advocacy and participates in inclusive research at the University of Malta; Anne-Marie Callus is senior lecturer at the Department of Disability Studies at the University of Malta. Among other work, she teaches and carries out research with people with learning disabilities and is a support member of a self-advocacy group
