Transition to adulthood
5. External support
5.1. Services in transition domains
Photo:fotolia.com
Many parents feel left alone by institutions, when their children grow up. [5] German research in this field confirms, that support services in the domains of leisure time, education and consulting are often unknown to parents. Support systems are often complex and unclear, and there are huge differences depending on organisation and locality. [6] This complexity leads to orientation problems and make decisions more difficult. Consulting and coordinating services are particularly missing. [7] Easy access to information – e. g. which services fit the familial needs – would be a great support for many parents. In Germany, such consulting services are currently set up all over the country in the framework of a government support program: “Complimentary and independent participation consulting” §32 SGB IX.
This chapter will give you an overview of possible support services in the following domains:
- Support services: peer group / relationships / leisure and education (5.1.1.)
- Individual attendance: Training autonomy and skills (5.1.2.)
- Support services in life planning: Employment, accommodation, partnership (5.1.3.)
5.1.1. Support services: peer group / relationships / leisure and education
By transport services, external supporters can contribute enormously to having possibilities for contact.
Personal assistance for activities with friends, first “dates” without parents, e. g. going to a café or to the cinema are very precious experiences for self-esteem. The contact can be intensively guided if necessary, e. g. giving tips for building relationships, support in conversations, communication support when having difficulties with articulation.
These services are often offered by voluntary services or students. Supporters and supportees are often the same age, and it plays an important role at norm orientation and experiencing identification. Young supporters often automatically become models for identification and attachment.
Note:
- A multitude of everyday activities will be trained during supported contact such as paying for your own ice-cream, finding the way to reach the ice-cream shop, etc.
- Good relationships independent from parental support can help adolescents with intellectual disability to develop on their own, maybe have new plans and realise them coping with challenges.
Photo: IB Suedwest gGmbH
Leisure time and educational services are more and more often offered in easy-to-understand language for slower learning speed and in smaller groups. Workshops and institutions for people with disability, but also official care providers develop services for people with disabilities on useful topics such as first-aid, healthy food, menopause or learning to write.
Leisure time activities are especially suited for making new contact, e. g. doing sports, attending courses, cultural or social events. It is important that adolescents choose their leisure time activities by themselves. The more fun the activity is, the more the motivation is raised to get into new virgin territory.
Today, leisure time services especially for PWID are provided. Leisure meetings, organized events, even long-distance journeys. Young PWID can be assisted and guided during these as well as solitary events, depending on request and necessity.
Note:
- Participation in educational and leisure time activities offer good opportunities to experience temporary separation
- To be able to choose, young PWID shall have enough information about nearby leisure time activities
5.1.2. Individual attendance: Train autonomy and skills
Personal assistance with individual guidance can be selectively booked for certain domains, e. g. going shopping or mobility training. In the educational and leisure time domain group trainings are offered for specific topics.
Photo: IB Sued-West gGmbH
Example: Preparation courses for independent living
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.
“A healthy pride about your skills includes the consciousness about your weaknesses. Only a self-esteem based on this self-consciousness is sustainable.”[8]. If weaknesses are accepted, it is easier to accept support that is then seen as “a measure for autonomy and independence”.
Correlations between autonomy, well-being and dependence can be summarized as follows:
The state of human well-being is established through a balance between the most reasonable level of independence and dependence caused by need for support. To realize independence in this sense, autonomy is an indispensable precondition for human well-being. [9]
ACTIVITY : “daily to do list”
What could your child's day plan look like?
Take a look at the this suggestion: Checklist
5.1.3. Support services in life planning
This subsection would like to provide you with more information about the following life planning topics:
Vocational training, employment
Accommodation
Support services: partnership, starting a family
The key method of PZP is future planning with supporters. Its main steps are the following: [12]
Family, friends, experts, colleagues who will be supportive during future planning are identified
The person doing the planning invites these people to their own future party
A moderator makes sure that the person is in the focus and their dreams and targets will be followed
A co-moderator drafts minutes about every step of the process
All supporters are important to contribute by creative solutions and their points of view and to assist the person doing the planning (leading character) during the realisation of steps to reach targets
Example: Melanie Bros-Spähn.
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:
- Vocational training, employment
Some adolescents have exact career aspirations while others have no idea at all about their future profession. Wishes and reality can drift heavily away from each other. Youngsters with mental disability often have more difficulties in self-evaluation.
Photo: IB Sued-West gGmbH
Note:
Think about career aspirations and the possible trainings for your child in due time. It is very important to consider fields of interest, strengths and weaknesses. Vocational trainings and job shadowing can be precious experiences.
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.
Note:
Seek good assistance when starting a vocational training. Problems such as excessive demands, difficulties to concentrate and conflicts with colleagues are normal at the beginning. It is important to get help fast and to react immediately.
In Germany many workshops offer sheltered working places in the first labour market for people with disabilities and have a bridging function towards inclusion by intermediation and attendance.
For your child - depending on the necessary level of support - visiting a daycare centre can be a good alternative, for example, for being prepared for working life or pursuing a reasonable daily structure.
„There is a significant difference in the development of children with disabilities. When parents let go of their child with disability, they don’t let them go into autonomy, they give them away to other hands. Especially if the child has a severe disability, this might give the parents the feeling of pushing off their children. But to let go of the adult child into a residence for example is not a compromise, but in many cases a step towards more autonomy”. [13]
Graphics: IB Sued-West gGmbH
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.
Preparation for and accompanying the move-out would rather lead to positive results and experiences if parents and experts arrange this process together. [16]
Pedagogical experts in the field of accommodation should closely work together with legal guardians.
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.
Photo: IB Sued-West gGmbH
Note:
- Allow your child the chance to have a partnership and discuss it with them. The experience of a friendship or love affair helps youngsters to loosen relations to their family, to find new attachment figures and to learn how to act in a new environment.
- Education in sexual matters is a basic precondition (also as protection against sexual abuse). Birth control should not only be well known, but the person should be able to prevent pregnancy autonomously.
- Participate in education on this subject.
- Allow your child to participate in respective educational trainings.
- People with mental disabilities can be parents. There is professional support in the form of an “assisted parenthood”.
Please look for further information in the Sexual Health module, e.g. or "women´s reproductive and sexual system".