Parents of adult disabled children have a greater reason than most to fear their death. What will happen to my child? How can people of modest means plan for those 20 or 40 years between our death and the death of that adult child?
What if the child’s abilities cannot be readily translated into gainful employment? What if the livelihood that kept our families afloat for all our working years provides for one lifetime, but not two?
While the kids are young, we are so immersed in keeping them from harm, of ferrying them to those endless appointments with professionals, of trying to find schools and programs where they will thrive, that we scarcely have the time or wherewithal to think of the long distant future. If you do plan, though, your older future self will thank you and so will your child.
Suze Orman always says at the end of her shows, “People first, then money, then things.” This order of importance pretty much works for planning for your child’s future. So, first people. When your child is growing up, you don’t even know who will be around 30 or so years into the future, but it makes sense to look to the young, your other children and close nieces and nephews.
Intuitively, we might feel that our special needs child has stolen attention from other children in the family enough. It would be wrong to expect them to look after their siblings as they establish their own marriages and families.
Block that thought! I think your more typical children will be better human beings if they know that you expect them to look after their siblings when you are gone. Consider it a lesson in what family means. Whatever negative feelings they might have toward the brother who screams in public or the sister who drags mom away just when the conversation is getting interesting, your mainstream children understand their brothers and sisters better than anyone and, with your help, come to love them.
In my family, it will fall to my grandson to look after his mother. She is on the spectrum (PDD) and will need help. He is now 18, loves his mother, and is more than willing to look after her when my husband and I are gone. (He likes power; that’s okay.)
In addition to young family members, think about cultivating younger friends in your church and community organizations. Support groups of others with special needs children will also strengthen your social network and help you form the family you choose, the one that will stay even when you are gone. Remember, you are not really placing a burden on anyone: helping others is one of humanity’s most fulfilling joys.
People first, then money. It turns out that money also involves people. Two of the most important people will be your lawyer and the person you choose to be your child’s trustee. Find a lawyer to make both a will and a special needs trust. When your child is 18, he or she may well be eligible for Supplemental Security Income (SSI).
This will provide an income of less than $1,000 a month, not enough to live on but still a big help. A rule of SSI is that recipients not have more than $2,000 in their bank accounts. Having more will put this benefit at risk. It would be a big mistake to leave any money directly to a special needs child who depends on SSI. Instead, leave it to the special needs trust. The trustee you name will have the discretion to use it for supplemental needs.
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Another way to plan for the future is through an ABLE account; your child (with your help) can save for the future without risking going over the $2,000 limit. In 2014, the federal ABLE act, allowed states to provide saving programs for the disabled, modeled on the 529 savings plans. People with disabilities and their families can save as much as $15,000 a year, money which can later be used for such expenses as transportation, housing, legal fees, and basic living expenses.
Once I knew about ABLE accounts, I tried to find one—not so easy. My bank referred me to their preferred investment firm, which also did not have the ABLE account. Since my grandson’s 529 plan is with Vanguard, I gave them a call. It turned out they didn’t have the ABLE account yet. I finally opened one at Fidelity. It took a phone call or two to get to the right place to register online, but once I was there, it just a matter of filling in the blanks.
Providing a place for your adult child to live can be tricky. If the child cannot live independently, then you must research group homes or facilities for the disabled in your area. It makes sense to check out what is available well before such housing becomes necessary. Even if adult children are self-sufficient enough to live alone in an apartment or house, they will still need help in taking care of matters of health, home maintenance, and isolation.
As age takes its toll on you, you might consider selling your house, moving into a retirement community and using some of the profits to place your son or daughter in the home you have chosen. You might just live longer, and you will be around to help your child adjust to the inevitable reality.
Let me amend Suze Orman. I’m going to replace things with citizen activist. First people, then money, then alert citizenship. Apart from the necessities of sheets, towels, and maybe a comfort item or two, things just don’t rise to the level of people and money. But if our adult child depends on SSI and Medicaid for the necessities of life and health care, we must become citizens who care enough to watch who we vote for.
If we see “entitlement reform” harming the most fragile members of society, who also happen to be our kids, we should consider becoming activist enough to call our public servants and remind them of their duty. As Gandhi said, “The true measure of society can be found in how it treats its most vulnerable members.” It is up to us to lead the way in advocating for our children even when they are adults.
This article was featured in Issue 91 – Great Back-to-School Strategies