Since most federal and state benefits are "needs-based," you need to know that the government is always looking over the shoulder of special needs persons. Know too that giving money directly to a special needs child or adult—especially if they're already receiving government benefits—can create problems.
If a person with special needs has more than $2,000 in their own name, he or she risks the loss of the government benefits that he or she already receives. It’s a major headache to get them back. Instead of giving a lump sum of cash to a special needs person, the money should be structured in a way that doesn't violate government benefit requirements.
This is important because children with disabilities, like Down syndrome, now have a much longer life expectancy. As a result, the dependent person will probably outlive the parents. However, they will still require care throughout their life. Many special needs adults live independently or in homes with little assistance. However, this doesn't mean that their government program benefits can cover their everyday needs. Therefore, it’s crucial to plan ahead.
There are several ways to have your money benefit people with special needs throughout their lives, without the loss of their federal benefits. One way is to create a special needs trust. This is a trust with the explicit purpose to "supplement, not supplant" federal and state assistance programs and to create a better quality of life for this person. A special needs trust can provide for special medical equipment, eyeglasses, and vacations.
Work with an experienced estate planning attorney to create a special needs trust, because there are many rules and regulations involved. For example, the beneficiary (the individual with special needs) can't own the trust—there must be a designated trustee or "third-party provider" who dispenses the money.
Another important part of an estate plan for the future of a dependent with special needs is a "letter of intent." These are instructions that state what the guardian wants to happen in the future. It sets out everything a person with special needs requires, their history and what you and the person want in the future.
Another alternative is an ABLE (Achieving Better Life Experience) account. This allows contributions to a maximum of $15,000 annually, provided the person is diagnosed as disabled prior to age 26. There is a maximum of $100,000 that can be in this account before the disabled person loses his or her government benefits. An ABLE account can be used for expenses like education, employment training, health, legal fees, and funeral expenses.
Avoid these common mistakes that parents and caregivers make when planning:
- Disinheriting the child with special needs. Government benefits help provide food, shelter, and medical care, but remember it’s no more than bare-bones necessities.
- Placing assets in your child's name. To qualify for government benefits like SSI or Medicaid, a person can’t have more than $2,000 in assets. If you leave funds or convertible assets directly to your child with special needs, they’ll need to be "spent down" to qualify for benefits.
- Relying on your other children to take care of their special needs sibling. This is a lot to ask of a brother or a sister, and it can cause resentment.
- Leaving money to your other children to support their sibling with special needs. This isn’t a good idea because the funds could be lost if the caregiving sibling dies, gets divorced or is sued, goes bankrupt, or just spends the funds. There's also no accountability.
- A 529 College Savings Plan or savings bond in your dependent's name. Like other assets, if these are more than $2,000, your child with special needs could be ineligible for government benefits.
Reference: CBS News (December 25, 2017) “’Special needs’ people need special financial planning”