I’m a Financial Planner, I help people create a Roadmap for their financial future. In the years since I started this journey I’ve had one fact reinforced more than any other – families like mine, having a child whose disability means they will likely never be truly independent, have additional considerations others will (thankfully) likely never have to think about. But this means we cannot, and should not, think our path will mirror anyone else’s.
SSI and Medicaid are benefits your child may be entitled to, and when they turn 18 the parents’ assets are no longer considered when doing the means testing. The child may also qualify for SNAP (food stamps), even if the parents’ are making 6 figure salaries. Even if a child is going to be in school until 21 (some states), they are eligible as adults at 18. I cannot stress enough – these are not benefits for the parent, they are for the child. And I encourage my clients to apply as soon as possible because if something were to happen to the parent(s), who is going to help the child(ren) get their benefits?
When to take Social Security could affect your child – through the Adult Disabled Child benefit. This could affect the amount of life insurance parents’ need to purchase, because it should absolutely be considered when determining how much the child(ren) will need to support their lifestyle. Another consideration is health insurance and pensions, in some cases (like the military and Federal government), children with significant disabilities may be eligible for health insurance beyond age 26 and a portion of the parent’s pension(s).
When discussing how much risk to take with investments, consideration must be given to how long your child(ren) will live. If they do not have a disability that may be expected to shorten their lifespan, there is no reason not to plan for them to live into their 90’s or beyond. Some families rely on their investments to offset expenses for their children in retirement, so need this money to at least keep up with inflation. Others want to pass the money to their children, so consideration should be given about RMD’s for survivors (even Roth IRA’s have RMD requirements for survivors).
These are just a few of the considerations families like mine think about – it can get even more involved when consideration needs to be given to hiring staff (caregivers/support) and/or therapies. Don’t make these decisions based on what your neighbors or friends suggest, especially if they are not in similar circumstances. And although I know it can be overwhelming, the worst thing you can do is nothing at all.