Disabilities present unique challenges to aging parents of a dependent adult, especially if they are primary caretakers.
Parents who have juggled the educational, emotional and physical needs of a child with special needs for 20 or 30 years must also make critical legal and financial decisions in anticipation of their own death and the future death of their child. Now is the time to make those final plans, and not leave the burden to surviving relatives.
Living arrangements is usually the first issue that comes to mind. Can the adult child remain at home and live independently with outside support? When a parent dies, will the event prompt a move to live with a sibling or other relative? Is that person willing and able to cope with an addition to his/her family?
The conversation should be held early and often, at a level that is understood by everyone involved.
The second issue is having an end of life plan for each of the parents and the dependent adult. Advance planning for the parents might include a cemetery plot for future burial of the son or daughter, or having cremated remains placed in the same plot with one parent. Once basic plans are in writing, costs can be covered with savings, or life insurance proceeds. After the parents are gone, who is left to pay? Siblings cannot be expected to pay for final arrangements. It needs to be taken care of in advance.
Generally, the individual with special needs has little to no income, and may be dependent upon public benefits or government assistance. This prevents them from accumulating assets or savings to cover the costs of burial or cremation. A special needs trust or prepaid funeral plan may avoid disrupting benefits eligibility. Once plans are on paper, a sibling or other designated person can complete the deathcare process without uncertainty or stress.
Advance planning makes perfect sense for any family, but especially for those with a dependent adult and aging parents.