There are basically four options for living arrangements for people who have Prader-Willi syndrome:
- Living with parents or other relatives
- Group home placement
- Specialized Residential services
- Supported Living services
Unfortunately, until such time as there is effective treatment to manage the hyperphagia (food drive) symptom caused by PWS, adults with the syndrome may not safely live truly independently. The issue of food control is paramount. While there are some individuals who live in supported living situations their access to food is strictly controlled, just as it would be living with family or in a group home. 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 child’s individual abilities and needs, your ability to care for your child, 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 child’s desires, etc. Keep in mind that the best option may change over time too.
PWCF highly recommends that individuals who have PWS only be placed in PWS-specific group homes unless the home agrees to appropriate food control measures similar to those implemented in PWS-specific homes.
PWCF maintains online and in-person Support Groups for parents and professionals.
PWSA (USA) maintains several Facebook support groups.