Balancing the costs and responsibilities of parenthood is hard enough. When you are parenting a child with special needs, the balance becomes even more difficult. How much money should you set aside for your child’s care? How can you advocate for the educational services and accommodations your child needs to succeed? What happens after your child turns 18, and when should you start preparing for that transition?
I reached out to April J. Lisbon, an autism coach strategist at Advocacy Coaching, as well as Katya Sverdlov of Sverdlov Law PLLC, to learn more about the challenges of parenting a special needs child, ways parents can budget for the cost of their child’s care, and considerations when their special needs child becomes an adult.
Why the costs of care can be complicated
Lisbon’s oldest son, now 13, was diagnosed with high-functioning autism at 5 years old. He was also diagnosed with dyslexia at age 11, making him what’s known as “twice-exceptional.”
Since Lisbon’s son was hitting most of his major developmental milestones, she assumed that he’d only need educational-based interventions and therapies such as speech therapy. “I was only ready to accept [his autism] educationally and not as part of his lived experience,” she explained.
Lisbon budgeted for expenses like speech therapy and occupational therapy, and her insurance helped cover many of the costs. Then things got more complicated.
“I did not realize what autism looked like until my son was severely bullied last school year,” Lisbon told me. Her son attempted to inform school administrators of what was going on, but they did not believe him—which led her son to become aggressive, suicidal, homicidal, “things I’d never expected in the world of autism.”
Lisbon’s son spent five days in an acute psychiatric hospital. “I had insurance, but my insurance didn’t cover all of the expenses that came with it,” Lisbon said. “When those bills kept coming — and we’re still paying on them! I was like, you’ve got to be kidding me.”
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Budgeting for the unexpected
Although a school bus video finally proved that Lisbon’s son was not lying about the physical abuse he was receiving from his classmates, “it was too late,” Lisbon explained. “The damage had already been done” — not only to Lisbon’s son, but also to the family’s finances.
Lisbon, who previously had excellent credit, is now readjusting her financial priorities. “There are some things that are going to have to go by the wayside, and credit is one of them.” She currently prioritizes house and car payments over credit card payments, has cut back on expenses like dining out and shopping, and is saving money on groceries by clipping coupons and shopping at wholesale stores. Any cash left over goes towards credit card bills or the Just In Case fund — that is, the money she’s setting aside for her son’s future unexpected expenses.
“Expect the unexpected,” Lisbon advises. “Just because your child has never had such an experience before doesn’t mean they won’t.”
If parents want an additional tool in their care toolbox, Sverdlov suggests seeking out legal assistance or a specialized attorney to help them advocate on behalf of their children’s special needs, especially when it comes to education.
The cost of working with an attorney will also need to be included in your budget, so make sure you get the most for your money by hiring a person with expertise in helping children with special needs. Sverdlov advises parents to ask school administrators which attorneys they’ve worked with previously, or to connect with other parents who have secured legal counsel for their special needs child. She also suggests contacting the local State Bar Association and asking for a referral service.
When your special needs child becomes an adult
Although some special needs children are able to live independently as adults, others are not—and parents will need to start preparing for this reality before their children turn 18.
“As soon as the child turns 18 years of age, he is considered to be a full adult capable of making decisions, regardless of mental capacity,” Sverdlov explains. “If the parent knows that the child cannot make his own decisions, the parent needs to apply for a guardianship order through the court. This will enable the parent to continue making decisions for the child past the age of maturity.” This process can cost thousands of dollars, so you may need to begin budgeting for it earlier than you’d anticipated.
It’s also important to think about how to provide for your child after you pass on. One option is to set up a special needs trust. “Special needs trusts ensure that there is money available for the daily needs of the special needs child, while simultaneously not jeopardizing the child’s government benefits (Medicaid, SSI, etc.),” Sverdlov explained. This type of trust can potentially save a parent hundreds of thousands of dollars, she said.
If you can’t afford to put money into a trust — and many parents of special needs children don’t have a lot of cash to spare — you can link the trust to a life insurance policy instead. “If parents have no spare money, they can purchase a life insurance policy and name the trust as the beneficiary of that policy.”
Grandparents and other relatives can also contribute to the trust or name the trust as a beneficiary. Depending on your situation, this might be preferable to other options, such as leaving the child money in a will. “Parents should also talk to other relatives to ensure that no one names the child as a direct beneficiary of their will or financial accounts, as this will cause the child to lose government benefits,” Sverdlov says.
Parenting a child with special needs is not easy, so parents will need to both plan ahead and prepare for the unexpected. This means setting aside money whenever possible, taking advantage of any and all resources available to you, and planning for both the short and long-term—which, like so many aspects of parenting, will be here before you know it.
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Nicole Dieker is a full-time freelance writer. Her work regularly appears on Bankrate, Lifehacker, The Write Life and numerous other sites. She is the author of Frugal and the Beast: And Other Financial Fairy Tales. This article is sponsored by Haven Life Insurance Agency. Opinions are her own.
The information provided is not written or intended as specific tax or legal advice. Haven Life Insurance Agency does not provide tax or legal advice. Individuals are encouraged to seek advice from their own tax or legal counsel. Individuals involved in the estate planning process should work with an estate planning team, including their own personal legal or tax counsel.
Haven Life Insurance Agency offers this as educational information only. Haven Life does not endorse or offer the products, services and/or strategies discussed here.