We’re getting older, and so are our children. I don’t think this comes as a surprise to anyone, but too many of us seem to be putting off planning for the time when we can’t take care of our children any longer. It’s scary, speaking for myself, it doesn’t seem like there are any great options – as I’ve shared before my son doesn’t want roommates (and can do well on his own), so typical Residential services don’t seem to be what he needs.
This led to the home purchase and ensuring my estate plan will be funded to cover any remaining mortgage (if I die young) and provide him with the quality of life he’s currently enjoying (nothing extravagant). What I’ve found to be challenging, whether planning for myself or my clients, is what to do when the child needs to live separately from the parents – and the parents are still alive.
In most States SSI will not pay enough to cover all the living expenses a disabled individual has – for 2019 the benefit is $771 for individuals ($1,157 for a married couple) – if housing is not paid for (i.e. no mortgage). Agencies offering Residential services (in Maryland) are paid by DDA, and the supported individual is responsible for a more affordable amount – other States have similar programs.
But what if, like my son, your child doesn’t want (or maybe qualify) for a Residential solution? Most likely it’s going to be up to you to subsidize your child’s lifestyle, so you need to factor this in when planning for your retirement. I’ve written in the past about the adult disabled child benefit, this can help in certain circumstances. I also encourage you to have your child work to whatever extent they possibly can – look into pre-employment transition services. It’s a Federal requirement for States to set aside 15% of their funds to help students with disabilities.
If they are working Social Security has programs to help them keep benefits like Medicaid, and they can start earning credits to qualify for their own Social Security benefits (which will generally be more substantial than SSI). If they are receiving SSI, start saving some, or all, of their benefit to their ABLE account.
I understand some families need their child’s SSI to help the family’s budget, not every solution will work for every family. However we (as families with children who have significant disabilities) need to take steps to protect our children for when we can’t help them ourselves. You don’t have to do this alone, there are non-profits and professionals who can help; many of whom are having similar experiences to you. Take the first step – be honest about what your child is going to need as an adult; and how are they going to be provided for.