There was a time when people who had developmental intellectual disabilities such as Down Syndrome rarely lived past their 20’s. With medical progress, many of these individuals will be blessed with a reasonably normal full life span. This presents major challenges for their parents or guardians, for the child could outlive the parent and lose that critical source of familiar lifestyle support.
For parents,the idea that their disabled child would survive them may be a new idea — they may never have expected this to occur.Also, it can be very difficult to ponder the idea that someone else would be taking care of their dependent adult child who has intellectual disabilities. Who would know her as well? Who would be so attentive to every nuance of the child’s daily routine and mood? Who would fully understand the child’s special needs and preferences? Some parents avoid dealing with these issues because they are so, so difficult to think about. There is a better way, because as I have always said since I first began elder law and special needs planning 20 years ago, “careful planning can prevent a crisis.”
Sudden removal of the child from the home where they have lived for decades can add substantially to the trauma of losing the parent. His bedroom is his safe and familiar place. He knows the layout of the rooms and yard and can safely navigate in that protected environment. Think about the trauma if the parent died and the house were suddenly sold and he were moved elsewhere.
I have developed testamentary plans for some clients in which the house is left to a Trust for benefit of the disabled child, along with sufficient cash to support the house and pay for the necessary live-in caregivers to enable the child to remain in the home for some transitional period of time. The house expenses are likely to be at least $1,500 a month, maybe $1,800 — taxes, insurance, maintenance, repair, heat and air conditioning. The time period depends on the needs and goals. In some cases it’s a year, in other cases longer. Each case is unique. This arrangement not only provides continuity, it can protect the individual while awaiting a residential placement through the Division of Developmental Disabilities (NJ-DDD), for instance. The Will can mandate the protective terms and the trust can be funded with life insurance or liquid assets. The child’s successor guardian or conservator would need to work well with the Trustee. The Will can direct that once the property is sold, a certain percentage of the assets remain in trust for the disabled child’s special needs while the rest is distributed to the other heirs. There is no end to the creative ways you can structure things.
“Leaving it all up to the other children” is also a plan, but one which has no specific financial or housing protections, and can create unnecessary burdens that could impair the relationship among your children. Instead, you can design a detailed care plan for your child which will survive your loving care, and give everyone involved the necessary peace of mind.
Call us about your estate planning and life care planning for your child with special needs ……… 732-382-6070