We all know that parents have the legal responsibility and right to make decisions for their minor children, however once a child becomes an adult responsibility transfers to them. For individuals with Prader-Willi syndrome they are not generally capable of making independent decisions regarding medical care, finances and living arrangements therefore PWCF recommends that as your child approaches their 18th birthday that you begin the process of conservatorship whereby you retain decision-making rights for your child. This requires filing a petition with the court and appearing (both you and the child) before a judge who approves/grants the conservatorship.
In California there are two types of conservatorship: Probate Conservatorships (of which there are two kinds – general and limited) and Lanterman-Petris-Short (LPS) Conservatorships. Generally speaking the LPS Conservatorship will not apply to a person with Prader-Willi syndrome as this type of conservatorship must be initiated by a local government entity and is reserved for individuals who have a severe mental disorder (schizophrenia, bi-polar disorder, etc.). Most individuals who have PWS will have one of the Probate Conservsatorships, either general (where all rights are retained by the parent or guardian) or limited where some rights are retained by the individual and some are granted to the parent or guardian. The specific rights that must be determined are:
- The right to determine where and with whom he or she lives
- The right of access to his or her confidential (educational, medical, etc.) records
- The right to marry
- The right to enter into a contract
- The right to consent to medical treatment
- The right to have social or sexual contacts
- The right to make decisions about his or her education
Which conservatorship is appropriate for your child will depend on his/her individual needs and abilities. PWCF suggests that you review the specifics of each kind to determine what is best for your child.
PWCF maintains online and in-person Support Groups for parents and professionals.
PWSA (USA) maintains several Facebook support groups.
Note: although two sources are from specific Regional Centers, the general information applies to all California families and therefore are provided as reference material