The Road Ahead – Main report

5. What information do parents want?


This section discusses the parents' own information needs. It shows that parents were often unaware that transition was more than leaving school and moving to the next day-time activity, the common assumption being that attendance at college was the next step for their young person.

The discussions revealed that parents had fundamental questions about their young person's transition. One parent asked:

'What choices does the young person have during transition? '

'What choices are available? '

'Who makes the choice about where and what the young person moves on to? '

Another asked:

'What are the choices? Where do I find out? Who do I ask? '

Parents' own information needs related directly to their lack of understanding of the transition process revealed in Section 2. Parents found transition a very emotional process and one that was difficult to understand, although they recognised it was related to the young person beginning to take charge of their life. In many cases, parents of older young people had experienced little transition planning. Parents were concerned both about their own role in the transition process as well as their young person's ability to take on adult responsibilities given their vulnerability in the wider society.

Parents' primary information needs fell into the following three key areas:

These areas of information need were confirmed by the supporters' discussions of what they perceived to be the parents' information needs.

The transition process

Many parents were not very aware of the formal process of transition planning and wanted to know:

The supporters confirmed that, in their experience, parents wanted to know:

The supporters felt that parents needed to know that the transition plan should be 'owned' by the young person, that the plan should reflect the young person's dreams and that while they were involved in the decisions, the young person should be the focus.

They believed that parents would ask questions about their involvement in the transition process, such as:

Supporters also recognised that parents would need assurance that the transition process would 'work at their pace as well as that of their son/daughter'.

5.3 The support available to families

Parents wanted information about who was going to support their young person in different contexts, for example, work, home, social life. Their questions included:

The supporters also felt that parents needed, a 'keyworker or advocate they can trust to guide them'. This person would provide continuous support, a single point of contact and regular feedback about the transition process. The supporters also believed parents would need information about 'where to go for information' and that information should be jargon free and easy to understand and include examples of progression or positive outcomes for other young people.

Parents (and supporters) also discussed parents' own needs for support and advice regarding the transition process and the fundamental changes that would occur in their family life. Parents expressed concerns about the young person's potential loss of contact with family and the impact on their family finances, with the loss of benefits, when their young person moved on.

Two parents also wanted information on the availability of long-term support. What happens if a parent dies? In one case the parents were their young person's only family.

The supporters felt that parents would also need support in dealing with the 'feeling that their family was breaking up' and that 'they were not going to lose their child'. These fears were voiced particularly strongly by Black supporters, who stressed the importance of community and the fear that young people would be taken out of the family circle. This fear was compounded by supporters' concerns that the young person's cultural background and their specific dietary, health and personal care needs might not be understood and addressed appropriately.

5.4 Information about changes and choices

Parents wanted information on most of the areas discussed by the young people. However, their discussions were tempered by their personal understanding of their young person's support needs, abilities and vulnerabilities, as well as their own lack of clarity about their role and who was responsible for what during the transition process. It was clear from the discussions that although official guidance says that all of the following areas should be considered in reviews, few parents had experienced such coverage at planning meetings.

Work - Parents wanted to know what opportunities were available for their young person, including training and work experience in the context of their young person's need for support. One parent asked:

'What next when he leaves school, what work can he do, and how will he be treated at the job if he gets one? Will he be treated like any other person of the same age if he works or as he's got severe learning difficulties will he be treated differently?'

Others had questions about work placements:

'What work placements give continued support on a one-to-one or small group basis?'

'Would needs be taken into account when in work and not lost in the humdrum of the work place?'

College - Parents wanted to know whether there was guidance available as to the most appropriate courses and whether residential college was an option.

Day services - These did not feature very prominently in discussions, although they were mentioned by a couple of parents when thinking about what their young person would do after leaving college.

Money - Parents said they wanted information on allowances and benefits and requested that this information should be 'made easier to understand'.

Safety - Parents wanted to know how they could be sure their young people would be kept safe. One parent asked:

'How do I know if he will be safe and happy?'

Housing - Parents wanted information on the types of housing options that would available for their young person. They mentioned Camphill Communities as well as local authority social services support and housing. One parent wanted to know:

'Rural or urban - are services and opportunities, different, better or worse?'

Parents understood that living away from home linked to a need for life skills and 'independence skills at college and after!'and how to live and travel independently.

Sex and relationships - Parents wanted information to help them think about this issue, which they considered difficult. One father said he did not even want to think about his daughter (aged 15) and sexual relationships. He had already observed a situation where an older man had taken advantage of his daughter's lack of 'stranger danger' at a social gathering.

Parents were concerned about how to respond to this issue, what information they should give their young person and how to give it. They asked:

'Do you leave them alone with a girl friend?'

'How personal do you get about sex without giving too much away?'

Having fun - Information on social events and leisure activities that were available for their young person was also wanted. One parent said:

'I would like my son to have a variety of social outings and activities and to meet new friends.'

Health issues - Parents discussed health issues too, particularly medical conditions and attending hospital appointments, rather than healthy living, exercise and having a balanced diet.

Money - Parents spoke of needing 'advice on allowances' and that 'information on benefits should be made easier to understand'. They also wanted to know:

'how much financial help is available?'

Other information - One parent wanted information on the law and people with learning difficulties. Another wanted basic information on learning disabilities, stating that when their child was younger only their physical disabilities were 'dealt with.'

Parents also wanted information about the services and supports available in their local area. Specifically they wanted to know :

The supporters anticipated that parents would want information on the themes above. They also felt that parents should be provided with information about how young people could be empowered. Parents needed to be informed about self advocacy and the importance of services understanding their young person's needs. They should also be supported to understand their young person's wants and dreams and 'how they can support and help them'.

The supporters felt that parents should be provided with information that would help parents to form a 'realistic understanding of their child' and what they would be likely to manage in adult life. They also thought parents would benefit from information about the advantages and disadvantages of different choices and would also require contact details of their young person's supporters.


This section focused on parents' information needs. It shows that parents need three key types of information. These are:

  • The transition process: what rights, entitlements and procedures exist at a national level? How does it work locally?
  • The support available for families during the transition period and beyond.
  • Information about the changes and choices available to young people locally.

The parents' discussions of their needs for information on the changes and choices available to their young person, came from their personal understanding of their young person's support needs, their abilities and vulnerabilities, as well as their own lack of clarity about who was responsible for what during the transition process and their role within it.