Transition to adulthood

Children grow up and everything changes. This is difficult even under "normal" circumstances, but if the child has an intellectual disability, this completely natural development is perceived as even more difficult. This process cannot be stopped, so it is better for all those involved to find out and learn as much as possible about what happens during puberty and adolescence.

„Is this object my body?!" A question frequently raised by pubescent people, when physical changes take place within their body.

There are changes in proportion and appearance of limbs, arms and legs become longer, primary sexual features develop, and secondary ones become visible. Hair grows where there was no hair before. For parents’ it is relatively easy to recognize physical changes. It gets more difficult when it comes to tackling emotional elements. There is often an open or silent revolt against regulations, discussions about the time of returning home, the choice of clothing style, appearance and so on. This is when teens become bitchy and aggressive, all but the “best friends” are stupid and parents are just embarrassing. These are signs of puberty.

But how are the changes of puberty perceived by young people?

In the first phase of puberty, the adolescent often feels insecure with the change in their physical appearance. They are almost "taken by surprise" by the physical changes and do not really know how to handle it.

There is a spontaneously increased sense of shame. The child suddenly no longer likes to be seen naked in front of the parents. Self-doubt and depressive moods are not uncommon in this phase. However, these can also result in tantrums.

Their behaviour is affected by physical alteration, as well as hormonal change. Because of change in physical appearance disturbed young people react by violent mood swings to even smaller events. As male sex hormone testosterone acts towards increase in aggression, young boys may especially incline towards violent behaviour. The aggression can be directed against anything opposes the youthful urge to unfold, especially against parents and socially prescribed rules and standards. [1]

In addition to the outbursts of rage, there can be excessive joy and in the next moment remorse for the outburst of rage. Other "new" emotions such as rivalry and jealousy are also being discovered. The adolescent may compare and measure themselves against their peers in an effort to be "the best", and, "the most popular".

Youngsters find themselves in a “tensional field” of familiar childhood kind of relationships and new, yet untested opportunities. This and an unknown future trigger a riot of emotions. On the one hand there are “the pain of parting” and grief over the end of childhood, as well as a fear of loss of security, a feeling of insecurity in the "new" body and doubt. This all stands opposite hope and confidence, confidence in their own strength and rage at everything that opposes their set goals.

In this emotional chaos the question of sexual identity also arises. Who am I as a man or a woman? How do I feel in this role? How do I appear to others? Hormonal change creates interest in potential partners.

Within the Sexual Health module these physical aspects have been described in detail, e.g. see Chapter on puberty.

The term 'adolescence' refers to the mental maturity process after puberty. In this stage the person is confronted by different developmental tasks. We want to answer these three important questions so that you understand adolescence more:

• How does the identity develop? (2.2.1)

• How does the youngster develop their own future? (2.2.2.)

• How to become independent and autonomous? (2.2.3.)

“Adolescence is a stage of life, where juveniles have to deal with physical changes, have to detach themselves from their parents and build new relationships to their peer group, to integrate their sexual needs and to develop new social and first professional identity.” [4]

2.2.1. Development of an independent identity - How does the identity develop?

"When the adolescent process (search for identity) is completed - in adolescence it continues in a more modest form - independent life and gradual, constructive integration into society begins, which is characterized, among other things, by the multifaceted formation of self-chosen relationships”. [5]

The realisation "I am an independent human being" is an important step on the way to adulthood. On the psychological level, your own orientation is no longer based primarily on the values and way of life of your parents, but on people and things outside the family. The idols of childhood give way to the stars and starlets from media; hairstyles and looks are compared extensively to those of friends and classmates. The views of parents are continuously questioned.

At the cultural level, a personal lifestyle develops that often fundamentally differs from that of the parents. It is possible that from one day to the other the pink girl's room gives way to a black cave or music taste changes completely.

See also "identity" in the Sexual health module.

2.2.2.  Development of a life perspective and life planning - How do youngsters develop their own future?

Your own life planning and prospects of further life are among the things that often change in the course of childhood. Career wishes vary from engine driver to astronaut. In adolescence, plans must become concrete. The adolescent develops their own intellectual and social competences that enable them to autonomously fulfil school requirements and later professional qualifications. Career choice and family planning are very important to young people in planning their paths even today. [6]

• Job and Occupation

Towards the end of school education, the topic of a career choice becomes important. The emphasis is on the material level, a financial and economic independence and thus financial independence from the parents. The focus is on personal abilities and career opportunities among other things. Young people evaluate their own career aspirations.  Recommendations by parents and teachers are considered as per their feasibility and social acceptance. [7]

In the final decision both parents and friends only play an orienting function. There is a strong desire for more information and practical experience in the run-up to career decision. 

• Living

The next step is spatial separation from the parents, the first home of your own. This step often takes place later in life, because of lengthy training periods and the difficulties in finding a job. What's more, young adults today stay much longer in their parents' homes than before. This may have economic reasons because housing is scarce and expensive. It is also possible that the urge for an early move is not present anymore.

• Family

Starting your own family is also often delayed in favour of career. [8] They see their own family as a place of social retreat. Even if the starting a family is pushed further back in life today, it is still a desired goal. Until you have your own family, parents usually remain the first point of contact in times of crisis.

• Friendship, peer group (clique) and relationship

To belong to other people, being part of a group and to understand yourself as part of society play an important role in developing a self-image and for well-being. In adolescence, relationship with friends become more important. It makes it possible to try different roles and "identities" within a protected framework, the peer group, and it is also an irreplaceable test field for practicing principles of reciprocity, such as negotiating or sharing opinions. As a result, independent values, different from those of parents can emerge - an important developmental task. [9]

Additionally, youngsters receive validations and security from friends’ as well as support in case of conflicts with parents and/or school. Support in the peer group facilitates emotional detachment from parents. Friends help with separation and search for a lifestyle of your own. In conflict situation, the juvenile is usually opposed to their parents. Recognition by their friends and belonging to a group are more important to them. Standards and admiration of the peer-group are more important than the taste of the parents; anyone can understand this, who has ever discussed about trendy dress styles with a teenager. [10]

Another important task on the path to personality is examining your role as a male or female: What is considered gender-typical in your group determines the framework of personal development. [11]

How friends behave in dealing with the opposite sex, what older group members do and what the parents have exemplified are the reference points the model of the young person is oriented to.

In the peer group, all topics that are of interest to the group, including career choice, are discussed. If a young person wishes to engage in some activity that is not gender specific, the group can employ some pressure on you to adhere to the specific role. In cases like this you require stable support from parents and a strong personality to follow your own plans. In a stable relationship, in case of important life issues, parents always remain to be contact persons. [12]

During adolescence, the initial common “black and white” view becomes somewhat moderated. The ability to accept counter-arguments and to form a complex judgment increases with mental maturity. An adolescent who can engage in discussions with others, reflect on contradictory statement, and express their own opinion has made a big step towards their own personality.

Another important task is to learn relationship skills. Important questions during this task are: "How do I get in touch with other people and start a relationship?", "How do I maintain friendships?", "How close do I want the contact to be?", "How do I deal with crashes?" Different degrees of intimacy and friendship are important learning points in this field. [13]

 2.2.4. Becoming independent and autonomous - How to become autonomous?

The evolution of independence starts with the first steps of the child; for the little ones it can be a play afternoon with friends without parental supervision or spending your pocket money as you wish. For older ones this extends to overnight stays with their best friend, weekends with their friends and the first holiday alone without guardians; teenagers prepare for their own lives.

An essential developmental task is to tackle school and professional challenges in an increasingly self-reliant manner. The more tasks are successfully mastered, the more self-confidence can develop.

Areas of "mental autonomy development" can be summarized as:

• Detachment from the parents

• Further development of your own identity

• Building your own ethics and values and acting accordingly

• Development and stabilisation of behaviour, thinking about and experiencing, as well as dealing with your own age 

• Developing a future perspective with the aim of becoming materially independent and exercising a profession

• Taking on adult social roles, e.g. through employment, choice of a partner, partnership and marriage, as well as parenthood

For adolescents without disability, a desire for autonomy and independence is usually supported by the parents, and they become gradually equal. Many parents find attempts to gain power, personal responsibility and self-determination by a child with ID stressful, especially when it is accompanied by difficult behavioural patterns.

• Development stages are non-contemporaneous (2.3.1.)‬‬‬‬‬

• Cognition is missing as a resource (2.3.2.)‬‬‬‬‬

• Replacement symptoms are not always recognizable as such (2.3.3.)‬‬‬‬‬

• Physical maturation as a development opportunity (2.3.4.)‬‬‬‬‬

• The peer group as a social resource (2.3.5.)‬‬‬‬‬

• The drive for replacement is fragile - the importance of special dependency (2.3.6.)‬‬‬‬‬

Like everyone else, PWID undergo the physical aspects of puberty. This is basically the same as with others, but maybe its timing is different. In these cases, puberty sometimes starts up to 5 years later and often lasts longer. Mental and emotional development drifts apart.

The psychological structure of PWID does not deviate from non-disabled people in principle. Thus, every maturation feature of an average person can also be observed under certain conditions or at certain times during the development of a PWID. [16]

Child development scoring matrix measures two developmental areas - the socio-emotional and the cognitive:

Parents and carers can check the development level of the PWID by trying to use the table to determine first cognitive, then emotional age. The person should be encountered at the respective stage of development and the different development areas should be strengthened separately, so that the person can reach the next stage of development. [18]

2.3.2. Cognition as a resource is missing

Abstract thinking helps to process experiences and arrange them for yourself.   

A primary school aged child can e.g. think logically about reasonable problems and review the experience. But it always relates to what they see or experience in the here and now. It is only during adolescence, that the ability to think abstractly is fully developed. The child can now derive logical consequences based on theoretical principles.

For PWID the ability of abstract thinking, depending on the degree of disability, is less pronounced. The opportunity to reflect on the change taking place is often not given.

The hormonal side effects of puberty such as mood swings, sudden outbursts of anger or new reactions of the milieu to expressions of your own will often cannot be well-managed by intellectually disabled people. They often feel helpless experiencing them. [19]

Adolescents also perceive limits clearer, that are often associated with painful processes.  E.g. a PWID attending an integrated school: growing cognitive discrepancies become more apparent and adolescents of the same age withdraw. Being different is experienced painfully by the adolescent. They feel increasingly marginalized and increased rivalry can be even more problematic.

Another example is an adolescent who grew up in an institution. They are more likely to suffer from the limits set in this environment and want to live free as "normal" youth. However, everyday life is often relatively structured and designed for living together in a larger group. The individual desire to dissociate and expand can often be less realized in this context.

Whatever boundaries teens may struggle with, it can lead to emotional frustration and injury. These are then often reacted on with aggressive, regressive or depressive behaviour. [20]

"The obvious and covert detachment and impulses of being self-sufficient by adolescent or already adult daughters and sons are often classified by parents as disability-specific problems and are neither understood, nor supported as necessary maturing steps on the way to be a grown up.Detachment handicap is a factor that get far too little attention.” [21]

It is important for adolescents with ID, that caregivers take their changed behaviour seriously and as a positive sign of development. That is not always easy. Thus, e.g. rule violations or denials are understood as a "simple" discipline problem, even though the young person is trying to gain new freedom for themselves. Especially when linguistic development make debate limited, it is difficult for both, parents and children to understand what is going on.

However, when it comes to the issue of replacement and a caregiver does react, the teenager becomes more helpless than before. Sometimes they only have anger or resignation and withdrawal. If they are not understood in their attempts to detach themselves, youngsters will not receive support for cutting the virtual umbilical cord.

What this means and how you can detect detachment symptoms as such is described in Chapter 3.1.1.

2.3.4. Physical maturation as a developmental opportunity

"Even severely disabled people who do not exceed the mental development level of a three-month-old infant show emotional hormonal side effects of puberty. ... Even a spiritual awakening can be observed with the severely disabled ... Thus, even for a mentally disabled person puberty is a time of upheaval that influences the overall personality and opens up new opportunities for development. However, which development steps can actually be carried out depends on the type and degree of disability." [22]

Dr. Senckel emphasizes that physical development can be an engine for social development, even with persons having complex disabilities. It is important to perceive and support this. She reports on a severely disabled man, who refused to be touched until his mid-20’s. He changed this behaviour at the beginning of his puberty. He made contact with other people, even timidly reaching for his caretakers. Nobody trusted him to do this earlier on.

The peer group is also an important resource for the development of puberty and adolescence for intellectually disabled adolescents.

"Within the peer group disabled young people are establishing their status; there is a strength measurement against rivals: aggressive confrontation and submissive serfdom are not unusual. But it can also develop sustainable friendships, so that new forms of social behaviour can be learned. Of course, with the sex drive also the interest in the opposite sex awakens. Here, too, the longings are like those of the non-disabled. A successful friendship makes an important contribution to the development of identity; not replaceable by adults." [24]

However, this resource is more difficult for them to access. These young people are usually limited in their mobility and independence. They find it harder to build and maintain relationships with the peer group outside of the family and school. In addition, contacts usually take place under supervision and are usually regulated by reference persons. It is also harder for them to engage in and use social infrastructures in their local environment. For example, they are not welcome at local youth club.

A particular difficulty for adolescents with disabilities is that they are often dependent on their parents or other caregivers for encounters with the peer group. They are less exposed to risks, but also have a limited field for practice. They live with a contradiction: meetings with the peer group as a support to the detachment from the parents must be accepted and accompanied by the parents. [25]

More about the meaning of the peer group and how you can support your child in  Chapter 3.1.2.

 2.3.6. The drive to detachment is fragile - the importance of special dependence

"What would happen to a person without detaching from the family? How many of them does still live with mother and father, are dependent on them and limited to the immediate living environment of the family? Who is their ideal if they live such a life?” [26]

Adolescents with disabilities want to get rid of dependency from the parents. This means they have an urge to go outside and friends become more important. At the same time, they depend on family support in many aspects. They need support in everyday life, bodily care, maintaining social contacts and much more.

"As far as attitude towards your own wishes and abilities is concerned, many adolescents with disabilities have ambivalence: on the one hand they want more independence, self-determination and autonomy; they also want to live "like others"; but the more they become aware of the fact that they depend on the support their parents offer them, the more they feel they are losing this safety." [27]

The care of the parents was and still is vital.

This ambivalence pulls them back into the family circle. Young people with mental disabilities are even more affected be this tension than others. The drive for detachment is thus very vulnerable.

Parents are aware of their child’s dependencies and these do not resolve by themselves because a pubescent teenager no longer wants his parents. [28] In this respect, the child with intellectual disabilities is also dependent on the parents in the matter of separation: the parents themselves must deal with detachment and also develop new future perspectives for themselves.

This raises the question of who should provide the necessary support for the child in the future. Parents are often the ones who (must) decide on measures and speed of steps here.

What helps parents to "let go" is described in Chapter 4.

Another difficulty for the parent-child relationship in adolescence is the role of the parents in supporting the child in the best possible way. This task is socially mediated. This is brought to parents from the beginning onwards and is ambivalent for them. The parents should accept their child as it is. At the same time, they should make sure that the youngster changes and becomes as normal as possible.

This means further pressure on those responsible. A child should function as inconspicuously as possible in society. For example, it is embarrassing for everyone, when a child suddenly shouts in public. In case of a small child, this behaviour is still accepted, but not in case of a disabled juvenile. How much (unobserved) experimentation can be tolerated in public? "Negative reactions of e.g. relatives or the public can intensify the bond of a family, so that a great intimacy in the familial relationship arises (..) and the child is additionally held in his dependent and autonomous role as a disabled person. [29]

“What is acceptable and in what situation?” This is not easy, because adolescents need challenges that are always associated with risks. However, because of their limitations, young people are often less able to protect themselves from injuries. Overstraining threatens to setback the development. This can go so far that the world out there seems too dangerous to these youngsters and this binds them even closer to the parents. However, borderline experiences are also important. If the developmental task of detachment is permanently postponed to later, it will get harder. The external incentives then must become even stronger. [30]

In this process young people have to experience many of their own fears as they are usually very much aware of the fears of their environment, especially of their parents. Such fears are often inaccessible, but still noticeable. This makes young people even more worried, especially when they fear losing their parental support. Therefore, if the desire for your own life threatens the relationship with the parents too much, it must be warded off. The easiest solution for this is also a closer bond with the parents; the dependency is reinforced. [31]

It could be helpful to talk to your child about your fears as well as theirs, and to encourage them to discover the world "on their own".

Please find additional information in the Communication module.

Further information on support can be found in chapters 3.1. and 3.3.

ACTIVITY: "Mobility Training"

Together with your child, create directions to a specific location. Read this for guidance: Mobility training

"As long as the child is still small, there is often a dense network that offers help: Counselling centres, parent groups, early intervention centres and much more. But when the child gets older, the parents often feel left alone. [...] Parent groups are separating again, because the disabilities of children and their developments are so different that the interests of the families are drifting apart. Brothers and sisters go through puberty and confront with the handicapped child, which is difficult for parents to bear. The PWID also changes. It goes through puberty and may show behavioural peculiarities, because they want to live more a self-determined life. But a child with a disability lives more dependent on his or her parents than other children: How can a person get rid of the umbilical cord in this addiction?” [1]

How can I support my child on their way to adulthood, so that they can live a self-determined and happy life despite their special needs? What can I pass on to him or her? How can I foster their personality development, life planning and independence?

This chapter is about how you can support your child in the following developmental tasks:

• On the road to identity (3.1.)

• During life planning (3.2.)

• Concerning independence (3.3.)

This Chapter will give you suggestions and ideas on how to help your child find their own identity. The following points which will be especially considered:

• Noticing behavioural differences as detachment symptoms (3.1.1.)

• Being part of a peer group (3.1.2.)

• Let them experiment (3.1.3.) 

As a reminder: First of all, parents must realize, that their child is beginning to take over, which is not always so easy for PWIDs, as they often develop in a diverging way, see also Chapter 2.3.1.

A pubescent with ID may not have reached the same level of development in all areas of personality:

It can be helpful in this context to focus your attention on significant physical changes in the child.

The changes in the process of growing up start at the physical level, signs of which are, for example, first menstruation or a voice rupture. These "signs" are points of reference and orientation, that indicate a new phase of development and entail necessary changes in the parent-child relationship.

How you can support them at this stage:

• Make your child aware of the change and help them to classify it

• Use these signs and landmarks as an occasion for a ritual or gift. For example, buy a gift that represents the new stage of life or issue a certificate for growing up and thereby make the change clear

• Show your child how proud you are of their development

Physical changes are followed by changes in behaviour.

As described in chapter 2.3.3., they appear in various ways and are often difficult to recognise as symptoms of detachment. [3] One expert rightly notes that people with a mental disability often receive little feedback on their social behaviour. Regulatory actions are taken or peculiarities are tolerated. This allows them to develop little self-regulation as they face little demand. There are therefore no disputes in which the young people have a chance to make a difference themselves.

How you can support them at this stage:

• In case of doubt, take up conflicts as conflicts about detachment, independence and talk to your child about it

• Give new freedom to the will of the young person in conflicts. Let it be enforced for once - even with possible negative consequences.

• Accept and support the desire for privacy - e.g. a closed room door.

• Do not use your child's level of cognitive development as a measure of detachment.

• Be aware of your child's lack of intellectual resources to process these things (processes). Support it by talking to him about these things and giving him emotional support.

• The art is to give free space as parents or educators without withdrawing emotionally.

The experience of people with intellectual disabilities is also limited by the fact that they are much more often under supervision in general. There are hardly any unobserved rooms.

"Little is possible without the consent of the parents."[11]

In the area of individual friendships and love relationships, it is also often the parents who (together with other parents) make appointments and organize driving services.

If the young person is allowed to have activities and experiences without parents, it can be assumed that a separation from parents will be more successful and positive.

It means that children who are granted situations without direct control they can experience their strengths and weaknesses independently in tend to develop a sense of identity and autonomy. [12]

People with intellectual and/or multiple disabilities often have additional chronic diseases or even disposition to acute diseases. They have special needs in terms of the scope and quality of their health care.

This is particularly serious with the transition from paediatric and adolescent health care to an adult one. Parents are sometimes shocked by unfamiliar atmosphere and other ways of working.

Some children lose contact with specialised health care when they stop using paediatric services. Effective treatment standards have been established for some paediatric and adolescent medical conditions, but no comparable care structures exist in the adult medical field.

One reason for this is, that life expectancy has increased for people with some complex and rare diseases due to improved medical standards. Adult health care has yet to catch up with this fact.[17]

In some countries (Germany, England) medical centres for adults with disabilities are there to ensure continued care of socio-paediatric patients in adulthood and thus facilitate transition.

Parents often have expert status for special illnesses of their child.

"Since these patients are not expected to become truly independent when they enter adulthood, parents retain their position as responsible persons and must again find reliable contacts in adult health care with sufficient understanding, time and professional expertise to take over the complex care of these patients and to respect the expert role of parents.“

• Becoming self-employed or supported by others - parents are important partners that actively participate in the process of life planning and accompanying the young adult.

• To advise young people in their life planning and to develop goals, you can arrange "Personal Future Planning".

You can find out which professional services can support you and your child in Chapter 5.

In this chapter you will find suggestions on how you can support your child in the process of becoming independent. The following areas will be discussed in more detail:

• Promoting strength (3.3.1.)

• Finding new learning fields (3.3.2.)

• Using the trust of external people in the child (3.3.3)

To develop strengths, children with severe disabilities need support. It is important to respond to the individual situation of the child and to find a balance between support and demands. Special support approaches have been developed for special forms of disability, e.g. the TEACCH concept for children with autistic disorders.

The trend in psychology and education – focusing on strengths rather than shortcomings - comes in various forms and approaches, such as salutogenesis and resilience concept, and has led to a resource-oriented attitude.

Resources are factors that can strengthen people in a situation.

"They can be created both in the persons themselves (personal resources) and also be brought to the person by the environment (environmental resources). If resources are pronounced, they support human development also by compensating for deficits and developmental disorders". [19]

Everyone has strengths.

For some they are intensive, for others less so. In some cases, the soft factors are "slumbering" and are still undiscovered. When people are asked about their strengths, they often do not have a clear and convincing answer and they have to first think long and hard.

So how do you intend to use your strengths, if you are not aware of them? By going on a search (be a treasure hunter!):

• Make it your task to identify and use the strengths and abilities of the children. Helpful questions are: What is your child really good at? What is very easy for them? Do they have any special skills?

• Include your family, friends and acquaintances because their opinion is from the "outside" and of great importance that opens new perspectives!

• It is crucial that you become aware of your strengths from time to time, develop them and, above all, actively use them. As with any training, the practice makes you a "master".

• Be creative and visualize strengths, e.g. through a collage, or collect the strengths and resources in a treasure chest that can be retrieved when necessary.

• Compare your child less with other children in their development but rather look at their uniqueness.  The best way to keep track of developments is to regularly draw up small advancement plans and reports.

• Every human being has resources that are more or less activated and are available for coping with life situations. [20]

• Encourage talent because our expectations for success are influenced by how much we believe in our strengths. [21]

• Look for role models and exemplary people for managing disability in adulthood.  - Role models, idols, quotes can steer your actions in the desired direction.  Imitation is one of the three major ways of learning. "Models show you that what you still consider impossible in your mind has long been a reality in somebody’s life."

For the adolescent it can create a very frustrating situation, if they lack chances to practice independence. [22]

How you can support your child with it:

•  Be aware that encouraging your child to become more autonomous does not mean abandoning or desert the child. [23]

•  How can young people (on a small scale) gain experience of being able to stand on their own two feet - even with the support of other people - but in such a way that they themselves are "in the centre"?  Create incentives for it! [24]

This chapter want supports you to in

• dealing with upcoming changes in the family system. 
  
• gaining knowledge in order to modify (actively) your role as parents.
  
• thinking about which support services and responsibilities can be handed over.
  
• reflecting on the advantages and disadvantages of „parents as legal guardians“.
  
• seeing the significance of the meetings with other parents and the possibility for exchange among each other.

It is important to know that detachment does not mean to break up the bond with your own children. The child will always have a relationship to the parents. The more stable the relationship is within the family, the stronger it will be, when the child becomes independent.[1] The bond is not cut, it is modified and reconstructed.

"Detachment comprises all developments within the parent-child-relation." [2]

Many parents put an equation mark between moving out of the parental house and detachment. But the first separation in the child’s life happens long before moving out. “Birth followed by ablactation, learning to walk, development of your own will (terrible two’s) etc. are milestones in the increasing independence from parents”.[3] It is a natural step on the way to autonomy to have your own apartment or a place in a living group. You as parents should be proud of your performance. You have managed to let your child go out to the world. Melancholy and fears can be mixed to this proudness: Melancholy, as a period of live ends, this intense parenthood won’t return, fears of changes in your own life and discomfort with the adult child.

„We make many transitions in our lives, but perhaps the one with the most far-reaching consequences is the transition into adulthood.”[4]

Detachment during youth is not only a time for development for the youngster, but also a time for learning for parents. “For both parties, detachment is a stage of dis- and new orientation and signifies identity crises not only for the child, but also for the parents.” „Unsolved detachment processes of youngsters restrain the new orientation of parents as much as unsolved new orientation of parents restrains the detachment of the young person.“[5] 

(2) The guardian has to ensure welfare of the supervised person. Welfare of the supervised person includes the possibility to arrange his life according to his own wishes and conceptions in the frame of his abilities.

(3) The guardian has to respond to the requests of the supervised person, if this does not run contrary to his interests and if it is reasonable for the guardian. This concerns also requests which have been expressed before the guardian has been appointed – unless the supervised person does obviously not want to stick to these requests. Before handling important issues, the guardian talks these over with the supervised person, as long as they do not run contrary to his interests.

Example: Preparation courses for independent living

Youngsters can gain knowledge and experiences that prepare them for the decision to a new accommodation form and moving out of their family home (Germany and Switzerland):

The duration and intensity of training courses are adapted to the needs of participants. The courses last between one and three years and can be passed at basic or advanced level. There is often a chance to experience a temporary accommodation immediately after the course, so that independent living in your own apartment or a shared house can be tried out without financial risk.

In the courses, there is training on housekeeping, but also on other common living issues: cooking, cleaning, shopping, communicating, solving conflicts, personal hygiene, behaviour during emergencies, handling money, leisure time activities, desires and dreams, getting around.

Personal skills, your desires and targets, but also group activities have an important role in these courses: experiencing together with others, the youngsters learn about their own strengths and weaknesses. 

Career aspirations related to her „presence and charisma” skills have been discussed during a PZP process. As a result, Melanie visits social institutions daily with her assistant. The planning process can be seen in this video:

• Handle the desires of your child in a creative way. Take up his abilities and wishes as ideas for new paths.

Support services in the field of employment in the EU-countries cannot be compared, so we can only give general advice. More Information can be found in the Human Rights module - Employment for PWID.

Our point of reference in giving concrete tips is the support system in Germany: When it comes to finding employment, people with disabilities are often dependent on long-term assistance. Vocational training in its conventional sense with accredited certificates is impossible for people with cognitive disability. There are specific possibilities for vocational trainings for these people, but their management is different from EU-country to EU-country. One of the most important decisions made in Germany is to organise support for employment and vocational training individually with personal assistance with a personal budget.

For more information you can address an organization for PWID in Germany offering vocational training units and having training departments of with sheltered workshops. Furthermore, in Germany they offer “daycare centres” for people in need of advancement in a second environment that have no focus on exploitable job performance.

A vocational training can lead to employment in a specific sheltered workshop for PWID (in the German system). It also opens the chance to find employment in the first labour market. Again, support systems in the European Union vary very much.

Those participating in a vocational training in a „sheltered working place“– within institutions of the support system for PWID – will usually also be supported when looking for a job or will be employed directly after the training.

Vocational training regardless where and how it takes place is a major step towards autonomy.

Moving out into your own apartment means to grow up for many adolescents with disability, even if they depend on permanent support.

If the child wants to stay in the family, it is important to permit as much independence as possible both for the person with disability and for their parents. When the parents are no longer able manage the care of the child due to their age, a decision will have to be taken on finding a permanent good living space where the child wants to live.

The number of possible living forms has multiplied over the past years: You can distinguish between non-confined supported living and permanent residential homes or living groups. [14] The grade of support is adjusted to the individual need for support. There can be 24-hour care or support only during daytime or at certain defined times. There are inclusive non-confined living groups students live together in together with people with cognitive limitations and shared houses included in community as social accommodation projects (example intergeneration houses).

Assistance in accommodation usually offers support, company and consulting on everyday matters, e. g. finding an apartment and keeping it, housekeeping and financial planning, personal crisis and conflicts, contact with offices and employers, healthcare and attendance at the doctor’s.

Young adults with an intellectual disability need intensive support when choosing an adequate accommodation form.

The following tasks are very helpful for acting together with parents: [15]

• Talk about different accommodation concepts.

• Gather information and consider individual needs.

• Visit chosen residential homes and eventually try out temporary stay.

• When moving in, it will be the parents’ task to give information residential home staff about the person with disability and their needs, interests and animosities in case this is impossible for the person themselves.

• Support services: partnerships, starting a family

A desire to have children often comes up in connection to sexuality and partnership. Experts advise parents to consult specialist organisations considering the importance of this subject. A reflective process has to be initiated and accompanied. People with disabilities can learn to evaluate their abilities as parents, for example what it means really to be responsible for a child day after day.

The process of detachment can also be understood as a process of “rebuilding relationships” among all participants.

When the child grows up the relation between one person looking up and one person looking down can slowly change into a relationship on an equal level between two adult persons. Contact between them will be on a voluntary basis and life is possible independently from each other. [18]

We can have more or less intensive contact to children moving out, and we can do the same with children with disabilities. Common activities, invitations for dinner, telephone conversations will keep up the bond with your child. There are many possibilities to have an ongoing family life with lower intensity. [19]

Pedagogical experts can offer close and important social support, a so-called resource during this reconstruction and detachment process.

When reconstructing relationships and transition it is important that living environment / and “systems” – (e.g. family and home) are connected to each other.

This means that experiences and behavioural structures that a person has learned in one system can be applied in other one. Furthermore, it is important that the person can see themselves as designers of different systems and can have impact. [20]

In order to give away your child into other hands, you need confidence in the people who will accompany the child. During the phase of confidence building it is important to give time to yourself and to others. [21]

It is helpful to consider the complex process of “detachment and arrival” especially when the child moves out. In this process participants have different interests and needs. The parents as “experts” on their child, the person with disability moving out as “expert” on his own needs and the staff as “experts” on methods and concepts. If different perspectives and working methods are well-known, they can be accepted and mutually supported. “Old” and “new” living environments can be harmonised on this basis.

Collaboration between parents and the circle of supporters is an important factor. Conflicts often occur if there is a non-acceptance of the respective competences. „(…) The parents often [feel] misunderstood and [see themselves] hindering the development of their children, and on the other hand professionals have the impression they can never be good enough for the parents." [22]

How can an active relationship design between the parents and supporters look like?

Considering the following can lead to a successful, fair and equal cooperation: [23]

• Be open in the cooperation, and then you can understand different positions.

• Plan time for a conversation. “Conversations and contacts should not only happen when there is an ‘issue’ but be understood as maintaining contact and a confidence building measure in working together". [24]

• Think about if and to what extent you want to actively collaborate with an institution.

• Ask for explanations of terms if too much expert language is used during the conversation.

• Avoid rivalry, it harms your child.

PWID are - depending on the grade of their need for support - dependent on special assistance and support throughout their lives. They live in a “tri-polar relationship net” in the triangle of dependence from professional and private contact persons. [26]

Difficulties can arise from education experts taking over parental tasks. Both feel responsible for the same tasks, e. g. for clothing, self-supply and future planning. Tasks overlap.

Besides all “overlaps”, it is important that both sides recognise that they have different competences and strengths that are very important for the children.

“Cooperation doesn’t only mean a good collaboration, harmony and communication, but also sharing responsibilities. Neither family nor education experts can exclusively give people everything they need".

There is a need for an agreement on division of work.

What does it mean?

• Parents are and remain parents. Their strength and their significance for their child consist of their reliability as relational person. They don’t change like the educational staff. They often give emotional support and they simply are there. Parents may favour their child and they may be the most important person for them and they can show this to them”. [27]

• Professional assistants can never offer this. They can never promise to have a reliable permanent relationship. (…) Experts have other strengths: They can support and demand, they can open up new worlds and abilities, they can trust more and require more. They can be much more consequent than parents, demand social behaviour and address people as adults”.

A successful collaboration between family and institution should be based on the following according to Klauss :

• Recognise the same targets in well-being, autonomy in everyday life, satisfying social relationships, interesting daily structure.

• Recognise the difference in tasks.

• Agreed division of work: concentrate on own strengths and implement them.

• In order to avoid conflicts, family and staff have the task to clear and manage the relation among themselves.

• When defining the division of work, it has to be specified which task should be done in the same way by both parties and what not. There may be differences. It will be possible to use different words for the same things as everybody, depending on their role, behaves differently. It may be helpful to make transition between worlds visible for example by changing the clothes when going home.

• For children living in a residential home, the division of work can provide enormous opportunities. If it is clear what rules must be obeyed at home and in the residential home, differences should not be difficult to manage. The child will be allowed to have different living worlds just like everybody behaving differently depending on their role.

• It may be helpful to make the changes of worlds visible. For example, to change the clothes when going home. Rituals like this create orientation.

And finally...

...an alternative conception of personhood (Eva Feder Kittay 2002):

"In a recent essay. I contrast the lives of those shattered by inappropriate institutions and social neglect with that of Sesha. I evoke a morning in my kitchen when Sesha, accompanied by her caregiver, is having breakfast, and I sneak in to give her a kiss:

Sesha, as always, is delighted to see me. Anxious to give me one of her distinctive kisses she tries to grab my hair to pull me to her mouth. Yet, at the same time my kisses tickle her and make her giggle too hard to concentrate on dropping the jam-covered toast before going after my hair. I can recall the sticky toast, the hair-pulling and the raspberry jam-covered mouth. In this charming dance, Sesha and I experience some of our most joyful moments - laughing, ducking, grabbing, kissing."