1. Buy enough life insurance. A parent is irreplaceable, but someone will have to fill in if the worst happens. It may be siblings or other relatives. In all likelihood, that family will have to pay for at least some services the parent or parents had provided when able. If the estate is not large enough for this purpose, it can be made large enough through life insurance proceeds. Premiums for second-to-die insurance (which pays off only when the second of two parents passes away) can be surprisingly low.

2. Set up a trust. Any funds left for a child with special needs, whether from an estate or the proceeds of a life insurance policy, should be held in trust for his or her benefit. Leaving money for anyone with a special need jeopardizes public benefits. Many people with special needs cannot manage funds, especially large amounts. Some families disinherit children with special needs, relying on their siblings to care for them. This approach is fraught with potential problems. Siblings can be sued, get divorced, disagree on their responsibilities, or run off with the funds. It can also cause tax problems for the siblings. The best approach is a trust fund set aside for the child with special needs.

Supported decision-making can be an alternative to unnecessary guardianships. It allows disabled people to get assistance with decisions while retaining autonomy. In supported decision-making, trusted persons can advise an individual with a disability, while the individual ultimately retains the final decision-making power about their own care and life.

Many relatives or caretakers of loved ones living with a disability may at some point need to be able to exert more control over their family member's personal affairs. For parents of children who have a disability, for instance, that time is often when the child is turning 18. However, you may face roadblocks if you have not filed paperwork that allows you to do so. Banks, agencies, and hospitals may push back on your ability to make decisions that can impact the care of your loved one, which can be very frustrating.