Wills & Trusts

While no one likes to think about their own mortality, it is always wise for parents to prepare for their unlikely departure. This is particularly important when it comes to a child with special needs, because you will want to ensure that everything is properly in place to care for your child. In addition to a will which lays out how your estate is to be dispersed, you will need a special needs trust (or sometimes called supplemental needs trust) for your child with Prader-Willi syndrome in order to preserve their eligibility for SSDI or SSI, Medi-Cal (Medicaid outside of CA) and any other benefits.

The laws governing wills and trusts vary state to state and change periodically, therefore it is important that you consult with a professional who is familiar with CA laws and to also periodically review your will and trust to make any necessary updates due to personal changes or changes in the law.

A mother of a child with PWSA of Colorado is an attorney by profession and offers this brochure as an overview of wills and trusts.

The California Bar Association maintains a referral service. The Special Needs Alliance website has a free trustee handbook that you can either download or have mailed to you. They also have a list of attorneys to help you locate someone to prepare your will and special needs trust.

PWSA has a product, Estate and Guardianship Presentation (item #255), which is available for purchase through their website.

Make Connections

PWCF maintains online and in-person Support Groups for parents and professionals.

PWSA (USA) maintains several Facebook support groups.