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Create a Special Needs Trust

A special needs trust is a means of financing your child’s needs and other expenses that are important to their quality of life. One of the most important benefits of a special needs trust is that it can carry on after your passing and continue funding your child’s needs. But it can also be important while you’re still alive. Special needs trusts can offer tax advantages, and they can help you pay for ongoing expenses.

If your disabled child is still a minor, one of those expenses might be the need for advocacy within the school system. Disabled children have the right to a public education. It takes reasonable accommodation on the part of the school district to make it happen, and that requires input from the parents, along with the guidance of a knowledgeable lawyer.

Create a Will

Putting a will together is a priority for anyone, regardless of whether they have disabled children — or are parents at all. But the issues that we can address in a will are often particularly urgent for those who want to look out for their disabled children.

A will can and should work in tandem with a trust. You can set up your assets to move directly into the trust, a step that will ensure your money is used to care for your disabled child and protect their access to means-tested government benefits like Supplemental Social Security (SSI) and Medicaid.

Protecting a disabled child’s access to appropriate government programs also underscores the importance of making sure family members understand the financial situation. A generous inheritance or gift given to a disabled adult child can actually do more harm than good. It can push them past the asset limit that recipients of SSI and Medicaid must abide by. A part of special needs planning is communicating to family members and friends the need to make sure any gifts or inheritances are given to the trust, not directly to the disabled person.

Another important part of the will is to address the matter of guardianship and conservatorship. These roles provide legal authority to act on behalf of someone else. Guardianship refers to physical care (residency, etc.) and medical care. Conservatorships deal with financial care. Your will needs to identify who will have the legal authority to take care of these affairs on your child’s behalf.

What if your disabled child has turned 18 and is now a legal adult? You may need to secure guardianship and conservatorship yourself. These roles will allow you to operate a bank account in your child’s name, speak for them at a doctor’s office, and sign legal documents on their behalf.

Guardianship and conservatorship of an adult require court approval, and your special needs planning attorney can work with you.

Continuity of Care

You may have a knowledgeable and trusted person in line to care for your child’s medical needs, but that person should still know exactly what protocols you are following for daily care.

A Letter of Intent will explain, in as much detail as possible, what your child’s daily routine is, what their likes and dislikes are, and who can be relied on to help out when needed. The Letter of Intent should also include contact information for all relevant professionals (doctors, therapists, etc.)

The Letter of Intent is not a legal document, but it will make continuity of care — something that can be of vital importance for a disabled child’s sense of security — possible. The details in a Letter of Intent are bound to change as the child gets older, so revisiting this on a periodic basis is a good idea.

Keep Thinking Ahead

Is your child going to continue living with you after the age of 18? There are disabled adult children who can live independently. You might buy a home for your child. If you have a trust set up, the property can be held there until the appropriate time.

Disabled adults can also apply for Section 8 vouchers or to live in group homes. The sooner you think about this, the better, because wait lists can be long. It’s reasonable to start exploring this by the time your child is a teenager.

Finally, your disabled child will need savings. The trust is one way of doing this. Another way is the ABLE account — a savings program that draws its name from the 2014 Achieving a Better Life Experience Act that created it. Contributions to ABLE accounts — also known as 529A accounts — are exempt from SSI and Medicaid limits, up to a point, and from federal income tax. 

Lexemy Law, LLC was founded by Attorney Alexandra Cook with the goal of helping parents who face the unique legal and financial challenges that come with raising a disabled child. It’s an experience Attorney Cook lives. She has the experience, aptitude, and compassion to help others do the necessary work of special needs planning. 

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