Persons with Prader-Willi syndrome will depend upon the supports and services provided through California’s Regional Center system throughout their lifetime. In order for Regional Center case coordinators to best support their client/consumer and his or her family, they must be familiar with the unique challenges that PWS poses during every stage of development of the individual’s lifetime.
The Prader-Willi California Foundation can provide telephone or on-site support upon request.
Prior to age 3 years, infants with PWS will qualify for Early Intervention services because PWS is an established risk condition (chromosomal disorder) and ’causes’ significant delay in multiple areas of development including adaptive development (feeding difficulties), physical and motor development, communication development (limited sound repertoire), cognitive development, emotional-social development.
From age 3 years, persons with PWS will qualify for Regional Center services by virtue of Mental Retardation, Autism, Epilepsy/Seizure Disorder, and/or the Fifth Category because the syndrome causes substantial disability and significant functional limitations in the areas of self-care, receptive and expressive language, learning, mobility, self-direction, capacity for independent living, and economic self-sufficiency.
Articles & other resources are provided below by category:
Medical Alert Booklet
Brain & Behavior DVD
Food, Behavior & Beyond DVD
Residential Staff Training DVD
Understanding the Student with PWS: Strategies for Success DVD
PWCF maintains online and in-person Support Groups for parents and professionals.
PWSA (USA) maintains several Facebook support groups.