One thing I have learned as a parent is that once you are a parent, you are a parent for the rest of your life. It does not matter how old your children are; they are still your kids. As parents we know that one of our tasks is to prepare our children to “leave the nest.” This is not an easy task because, as parents, we want to shield our children from any negative aspects in life, and as independent-functioning adults we know that life includes some “hurts” along the way. However, having our children move from a dependent relationship with us to a co-equal relationship can be liberating. We can still be supportive, but we no longer have all the responsibility for them. But if we find it hard it is to help our children, who are not disabled, to leave the nest, think of how much harder it is for parents of a disabled (special needs) child. In some cases parents may irrationally feel responsible for the disability their child has. In many cases that parental impulse to protect our children from life’s “hurts” will be intensified for parents whose children face more challenges than the majority of children. As hard as it is, however, we should still be preparing our children for as independent a life as possible, and there are resources to help in this process. Some disabled children may function well in a group home setting. Others may do well in subsidized, handicapped accessible apartments. And others may need the support of adult siblings or “mentors.” Depending on your child’s disability, there may be a national association that provides support and information about resources. In Central PA we are fortunate to have the Center for Independent Living, which assists people with any type of disability to maximize their independence.
There are several reasons why it is a good idea to help a disabled child move toward independence. First of all, it can be beneficial to children’s’ self-esteem that they no longer have to have Mom and Dad help them with everything. Secondly as the parents age into their 70’s and 80’s, their physical ability to be caregivers declines. Thirdly, while dealing with the death of parents is difficult, if the grieving, disabled child left behind has to adapt to a new living environment at the same time, this difficulty is compounded.
Regarding the child’s financial security, an additional point is that, if the disabled child is on a government program of assistance which has income and asset limitations, then as a parent you need to obtain good estate planning advice. An example would be if a child on Supplemental Security Income Disability Income (SSIDI) inherits money that raises the assets of the child above $2,000, then the child will lose his or her SSI benefits. Elder Law attorneys know how to structure parents’ wills so their estates can benefit a disabled child without causing the child to lose government benefits.