Being a parent comes with inherent challenges, but as a parent of a child with special needs you’re faced with a unique set of concerns. Coordinating even day-to-day tasks can be difficult, and the thought of estate planning for your child can seem nearly impossible.
To help parents navigate the emotional waters of financial and estate planning for a child with special needs, chartered financial consultant Dean Klassman, founder of Klassman Special Needs Planning, and Sherri Schneider, founder of Family Benefit Solutions, created what they call the “nine innings of special needs financial planning.”
Inspired by the Keshet Buddy Baseball program Klassman founded, the innings provide big-picture personal finance advice for any parent faced with planning for a child with special needs.
First inning: The fundamentals
The first step in creating a successful financial plan is thoroughly understanding your child’s diagnosis and prognosis, as this will guide your priorities and needs.
If your child remains in the hospital for an extended period after he or she is born, apply for Supplemental Security Income (SSI, or Social Security)—your income and assets will not disqualify you as long as your child is hospitalized. You can contact Social Security at 1-800-772-1213.
During the early years of your child’s life, have him or her evaluated for early intervention programs, which can be identified through your state’s department of human services. Meanwhile, be sure not to put any assets in your child’s name (more on this in the third inning).
Second inning: State funding
If applicable, sign up for your state’s waiting list to receive special needs support. Your state may provide benefits such as in-home supports, respite care, job coaches, residential living arrangements, adaptive equipment, and more. Not every state has such a list, and signing up does not guarantee eligibility of services. To find a waiting list in your area, contact your state’s chapter of the Arc, an organization for people with intellectual and developmental disabilities.
Third inning: Special needs estate planning
A crucial aspect of planning for your child with special needs is establishing a trust. Holding more than $2,000 worth of assets in your child’s name can put him or her at risk of losing public assistance benefits, like Medicaid and SSI. Setting up a trust will allow you to manage the money available to your child without harming his or her eligibility for these benefits.
An attorney who specializes in special needs planning can help you understand the ins and outs of creating a proper special needs trust. Locate an attorney in your area who is up to date with the ever-changing rules; the Special Needs Alliance is one organization that can help you find an attorney.
Fourth inning: Fund your trust
Look to an insurance or investment broker to creatively fund your special needs trust with stocks, bonds, and insurance proceeds. You may also want to consider purchasing second-to-die insurance, also known as survivorship or dual-life insurance. Commonly used in estate planning, this type of insurance pays benefits only after the last surviving spouse dies. “You don’t want to outlive your insurance,” Klassman says.
You will also need to appoint a guardian and a trustee. “Personally,” Klassman notes, “I like it to be two different people to create a system of checks and balances. You don’t want to worry that you are leaving it to someone who will take advantage of the trust.”
Fifth inning: Individualized Education Plan (IEP)
A customized plan will ensure your child gets the most out of his or her education. The Individuals with Disabilities Education Act (IDEA) requires students who qualify as special needs to have an Individualized Education Plan (IEP).
A legally binding document, the IEP outlines which special needs services your child will receive and why. For more detailed information about IEPs, visit the U.S. Department of Education’s Guide to the Individualized Education Program.
Sixth inning: Transition planning
Transition planning refers to your child’s post-school plans. Your school should begin the transition planning process as part of your child’s IEP several years before he or she turns 18, but specific ages vary by state.
Your child will have access to public education up to a certain age; check with your state school board to determine what ages apply. Around the time your child will turn 21, investigate day or residential programs he or she may attend when school is finished.
Seventh Inning: A life in action
Age 18 is a milestone year for your teenager—and for his or her financial plan. At age 18 he or she may apply for SSI and Medicaid, but Klassman recommends confirming that qualification at age 17.
Other factors to consider at this stage include looking at guardianship versus power of attorney, registering for selective service (for males), and registering to vote, if applicable. This is also a good time to consider joining advocacy and support groups with your child.
Eighth inning: Letter of intent
While not a legal document, a letter of intent provides valuable information regarding your child’s likes and dislikes, daily routine, housing preferences, health issues, personal habits, and preferred caregivers. The letter will require continual updating as time passes.
“I recommend writing the letter at a young age, in case of parents’ premature death,” Klassman advises. “Update it at your child’s birthday every year, or at least every couple of years.”
Ninth inning: Another year with no errors
Special needs planning requires plenty of collaboration, decision making, and research, but an annual review with a trusted financial planner and other qualified professionals can make the journey much smoother and less stressful.
Try not to neglect other facets of your family’s financial life. “Most often, families have more than one child,” Klassman says. “Don’t give up on your estate planning for your other kids. And don’t give up on your own retirement, either.”