There are basically four options for living arrangements for people who have Prader-Willi syndrome:
- Living with parents or other relatives
- Specialized Residential services settings such as a group home
- Supported Living services settings
Until such time as there is effective treatment to manage PWS’ hyperphagia (food drive) symptom adults with PWS can not safely live truly independently. The issue of food control is paramount. Options for living outside the family home include living in a Supported Living setting where access to food is strictly controlled and in an Adult Residential Facility, or group home, where access to food is strictly controlled. Inevitably those who have tried living independently have gained unsafe amounts of weight or have died before moving back to an environment where food is once again safe.
Which of the above living arrangements is best for your family will depend on your adult child’s individual abilities and needs, your ability to care for your loved one, the needs of others living in your home, resources available (funding from Regional Center, private funds, proximity and quality of group home options, etc.), your adult child’s desires, etc. Keep in mind that the best option for today may change over time.
PWCF highly recommends that individuals who live outside the family home live in a PWS-specific designated residential setting unless the home’s staff and all other residents agree to food control measures similar to those implemented in PWS-specific homes, including restricting access to unauthorized food with locks. PWCF can provide a PWS Residential Staff Training to any residential setting that serves someone with PWS.
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