When you have a disabled child, you’re used to every step of parenthood coming with some extra complications. Whether it’s medical care, the first day of school, or their first high school job, you’ve always needed to consider how your child’s disability might affect things. The transition to adulthood is no different.
While your child will be legally an adult, they may continue to rely on you more than average. Yet so much disability accommodation comes through school and evaporates when your child graduates. To make sure your child’s needs are taken care of, it helps to start planning years in advance.
Consider Your Child’s Needs
Every disabled adult is different. Some will be able and want to work, but need assistance at home. Others might want to live independently, but not be able to support themselves financially. Consider all the areas your child gets help with: finances, executive function, self care, supervision, and so on. What support will you need to assemble for them in adulthood?
Depending on their abilities and wishes, you can start to draw a picture of their adult life and the support network they need. Will they continue to live with you? What will they do during the day? If they want to move out, will they have an independent apartment, or is there a supportive housing arrangement available?
Their adulthood plan should include the following:
- Food—both buying and preparing it
- Medical care
- Therapies they need
- Adaptive technology or tools
- Social life
- Continued opportunities to grow—job training, continuing education, etc.
Care for the vulnerable isn’t just the job of the family, but of society as a whole. Local, state, and federal programs exist to help disabled adults thrive. Unfortunately, getting into these programs is difficult, and may take considerable effort to arrange.
Social Security Income (SSI) and Social Security Disability Income (SSDI) are two crucial programs you may already have some familiarity with. But the standards and income requirements are different for adults than they are for minors, so you will need to reapply. The standard for disability changes from “marked and severe functional limitations” to “inability to do any substantial gainful activity.” This is more strict, so you will want to gather all medical records that will help you prove your child meets this standard. Second, the income requirements are now easier: instead of considering your income, the Social Security Administration will only count your child’s personal income and assets.
Depending on your state, educational supports continue until 21 to 26 years old. In general, if your child is still finishing high school after 18, they continue to be covered by IDEA (the Individuals with Disabilities Education Act) until 21. This means they have the same rights they had as a minor—whatever assistance they need to receive a free and appropriate public education. After that, some states offer other assistance, either in college or in vocational training. Talk to your school district to be sure.
Lastly, you may wish to seek a Medicaid waiver. There are a number of different ones, allowing Medicaid to pay for services it wouldn’t normally. These are available on a state-by-state basis, covering things from home health aides to medical supplies. Some of these have a long waiting list, so you’ll want to apply early.
Finances for Your Adult Child
Especially if they hope to live independently, your adult child will need money. SSI and SSDI may cover some of this, but they can also come with limitations. Your child will not be able to earn too much money without losing benefits. Also, they can’t have too many assets, whether in cash, a car, or a home. This can feel like a trap, especially when you want to save money to provide for your child’s needs after you’re gone.
Enter ABLE accounts and special needs trusts. Both of these are ways you can set aside money for a disabled adult’s needs without the assets being counted against their benefits. You can put away more money in a special needs trust without affecting your child’s benefits, but it’s more difficult to set up. You will need an attorney to help you.
If you are divorced, custody arrangements usually cease to apply after your child turns 18. However, child support might still continue. Some states require child support to continue if the child isn’t self-supporting. In others, it depends on what is in your original divorce agreement.
See an Expert Before Your Child Becomes an Adult
While you and your child work on their adulthood plan, you’ll want to rally all the experts you can. This may include their school IEP team, their doctor, a special needs advocate, or a special needs lawyer. But for creating the financial side of your plan, you’ll need a financial advisor. An advisor with experience in special needs planning is ideal. We can connect you with the right person when you contact us.