Housing and employment opportunities for people with PWS

Children with PWS grow up. They want to live independently.

If a person with PWS moves out of his or her home environment and lives in an assisted living group in the future, this represents a new phase in his or her life that requires a certain amount of planning and preparation. In Germany, there is now a relatively wide range of housing available. The PWSVD helps parents and their children with PWS in the search and selection of the “right” place to live.

On our website, all residential facilities are introduced by means of a short profile. You will find more detailed information on the individual residential groups in our special report on living, which you can also order here.

Finding the right residential group

Selection criteria:

However, we recommend that you do not rely solely on this information when choosing the right place to live, but take a close look at the individual residential groups and places to live. Because all the facilities have different structures in the living and working areas, and parents have the difficult task of finding the right facility for their child’s personality structure. You and your child can talk to those in charge and ask any questions you think are important.

The working group “Housing & Employment” of the PWSVD has accompanied the creation and development of the facilities over many years and the following points are important to us:

  • PWS-appropriate nutrition

  • location and infrastructure of the respective facility

  • building equipment

  • number of residential groups, including how many house people with PWS

  • housing unit facilities

  • personnel situation for the residential group

  • qualification of employees

  • employment in the form of a workshop for the disabled, “first labour market” or daily structure

  • medical care

  • psychological assistance

Finding the right residential group

However, we recommend that you do not rely solely on this information when choosing the right place to live, but take a close look at the individual residential groups and places to live. Because all the facilities have different structures in the living and working areas, and parents have the difficult task of finding the right facility for their child’s personality structure. You and your child can talk to those in charge and ask any questions you think are important.

The working group “Housing & Employment” of the PWSVD has accompanied the creation and development of the facilities over many years and the following points are important to us:

Selection criteria:

  • PWS-appropriate nutrition

  • location and infrastructure of the respective facility

  • building equipment

  • number of residential groups, including how many house people with PWS

  • housing unit facilities

  • personnel situation for the residential group

  • qualification of employees

  • employment in the form of a workshop for the disabled, “first labour market” or daily structure

  • medical care

  • psychological assistance

Individual care

Not only the complexity of the Prader-Willi Syndrome but also the individual personalities of each person with PWS require very intensive care and support. As parents, you know all too well about the numerous special features and challenges involved in caring for your child. To meet these individual needs, the institution must provide qualified staff who are trained in dealing with people with disabilities and in particular have specific knowledge and understanding of PWS and its implications. The PWSVD considers a personnel key of 1:1 to be desirable in order to guarantee demand-oriented support.

In the context of a meaningful activity, an active and interesting daily schedule should consider the following:

Sample daily schedule

  • Sporting activity
  • Therapeutic measures
  • Joint activities
  • Leisure activities
  • Housekeeping
  • Personal freedom
  • Individual development of cognitive skills (reading, writing, arithmetic etc.)
  • Group discussions

    Overall, the residents are offered training so that they develop more independence and social competence. Residents with PWS should be involved in dealing with the consequences of PWS-specific symptoms, e.g. as a result of abnormalities.

Individual care

Sample daily schedule

Not only the complexity of the Prader-Willi Syndrome but also the individual personalities of each person with PWS require very intensive care and support. As parents, you know all too well about the numerous special features and challenges involved in caring for your child. To meet these individual needs, the institution must provide qualified staff who are trained in dealing with people with disabilities and in particular have specific knowledge and understanding of PWS and its implications. The PWSVD considers a personnel key of 1:1 to be desirable in order to guarantee demand-oriented support.

In the context of a meaningful activity, an active and interesting daily schedule should consider the following:

  • Sporting activity
  • Therapeutic measures
  • Joint activities
  • Leisure activities
  • Housekeeping
  • Personal freedom
  • Individual development of cognitive skills (reading, writing, arithmetic etc.)
  • Group discussions

    Overall, the residents are offered training so that they develop more independence and social competence. Residents with PWS should be involved in dealing with the consequences of PWS-specific symptoms, e.g. as a result of abnormalities.

The advice centre for people with Prader-Willi Syndrome

Many facilities offer the opportunity to experience the respective residential group in the form of a trial. In most cases, this can be financed through disability care. The later costs of accommodation are usually borne by the social agencies. Only in very rare cases (very high incomes) are parents required to pay a share of the costs, which exceeds the current flat-rate amount of € 50.

The Housing and Employment Working Group is continuing its intensive efforts to win over sponsors for housing opportunities to improve the regional situation as regards proximity to parents’ homes.

We observe the development of alternative housing options, focusing on the needs and abilities of the individual.

You can find out about the current status of our efforts and vacant places reported to us at any time at the office of the PWS Association.

People with Prader-Willi Syndrome should be encouraged to lead a happy and healthy life.

Contact person of the Housing Working Group: wohnen@prader-willi.de