If you’ve been caring for your child who has special needs, you have deep personal knowledge of how your child behaves and responds. You know what they like and what they hate. You know what triggers an anxious or distressed reaction. It could be a flavor, a show, a color, or a person.
As an aging parent, you are probably concerned about who will take care of your child when you are gone. Even as a young parent, this could be on your mind. You may be thinking only about your estate plan – what funds should I set aside? Who will mange those for my child? Do I need a Special Needs Trust (SNT)? Who should I designate as the successor guardian in my Last Will and testament? These are critical decisions for you to make. But what about the actual care plan? There are so many details to think about and convey to the person who follows in your shoes.
Who is going to take your place? Can your child stay in the home? Who will live there and oversee the daily routine? Who will take care of the house? How will they know just what your child is like, or what your preferences are? How will they know about the social life and cultural life your child enjoys? If religious practices or weekly rituals are important, does the potential caregiver know about that? Do they know just how you enable your child to participate in these activities? What is the supported decision-making model that you have been using with your child?
The answer is to write up a blueprint for special needs care — a “master plan”. Call it what you like, it is a detailed discussion of the kinds of things just described. Write up the daily schedule, food preferences, clothing preferences. Include names of favored friends and relatives, best-loved teachers and aides, doctors and health care providers, and people who must be avoided. Collect the IEPs, IQ tests and other cognitive evaluations, progress reports, court orders, and medical records. Collect the current Social Security or SSI documents and Medicaid or Medicare proofs. List the doctors and prescriptions. Make requests or recommendations for activities and outings. No detail is too small.
Call us for special needs future care planning, and estate planning … 732-382-6070