If your child with a developmental or other type of disability is not going to be able to care for their own personal and financial needs in adulthood, you will need to set up a system that can ensure they are cared for to the end of their life. That involves preparation in four key areas.
KEY ONE: Build a Community of Caregivers
Your child will need more than one person, more than a guardian, to help them through life. People have different roles and purposes in your child’s life and all need to be welcomed and “in the loop” on your child on a regular basis. Be sure to give everyone permission to talk to each other and speak up about your child.
KEY TWO: Financial Supports
Government benefits are the cornerstone for adults who have been disabled since childhood. SSI cash benefits from social security along with Medicaid will give your child access to a variety of supports designed to allow them to remain living in the community. Parents and other family members can also provide substantial amounts of money to supplement the government benefits through inheritance, life insurance, and pension benefits, but ONLY if its done the right way.
KEY THREE: Transition Tools
At various points in your child’s life there will be transitions from one caregiver to another. You must provide the information needed to make that transition a smooth one. Everything from lists of doctors and medications to contact information for family and friends to the parent’s priorities for the individual’s life should be written down and made easily accessible to anyone who cares for your child.
KEY FOUR: Legal Documents
The best made plans will only work as you intend if you provide the legal documents needed to enforce the plan. Court sanctioned guardians, special needs trusts with well chosen trustees, designations of agents and other legal planning tools are a must in order to ensure that your plan can work properly.