Caring for those in Need

Danger Spots to Remember When Your Son or Daughter Starts Working

My daughter with Down syndrome has her career pretty well mapped out. She gets asked, a lot, about what she wants to do – it’s a regular theme for anyone in their senior year in high school. “What will you do next?” She answers that she is considering school or maybe working. Like any senior, she has a quick, pat answer ready to go for that question as it comes up all the time. And the eye roll that goes with it.

BY Rob Wrubel, CFP® | October 2020 | Category: Employment & Transition

Danger Spots to Remember When Your Son or Daughter Starts Working

My three children and I have plenty of conversations around the dinner table. Sometimes, they are doing things beyond my abilities to help. My son, long ago, stopped asking for help in his math and science courses – he is well past what I remember or ever learned and his homework just baffles me. Engineers need to learn very different approaches to thinking than financial folks.

My daughter Sarah will answer that she wants to be a cosmetologist. Now, I am a single Dad and I’d love to help my children reach their goals in life. My talent in make-up is about as good as my engineering skills - pretty much nothing. I am okay about asking for more information, and so I’ve asked her what she really wants out of her career.

Her answer is consistent and highly entertaining. Ideally, she will work in Hollywood on a TV show and have an apartment (not a house) there, and another in New York. Good on her. I’m not sure she really gets the distance between the two cities though I do think she expects to have a private plane to take her back and forth. These are career dreams I do understand.

Work will be an important part of her life no matter what she does. Sarah loves the social environment of school and I cannot imagine her sitting home during the day without people, pay, and purpose.

Part of special needs planning means preparing for and receiving funds and supports from benefit programs. These programs don’t pay enough to live a high quality of life and can be seen to keep people in poverty. SSI recipients cannot have more than $2,000 in countable resources and most benefits are tied to maintaining income far below Federal poverty levels.

Still, the value of benefits is so big that it cannot be replaced by working. Health insurance from Medicaid, supported living, community access and Supplemental Security Income (SSI) can be worth tens to hundreds of thousands of dollars per year.

There are a few danger spots to remember when your son or daughter starts working.

  1. Income. Unfortunately, benefit program rules mean we have to watch the income our family members earn. SSI and Medicaid can be lost if your family member earns too much money. It’s an unusual problem to have – we want people to work but if they work too much, their health insurance and community supports disappear. Check with your state rules to find out the income ceiling and watch that closely. Work with employers to create a schedule that fits for them and for your family member.

  2. Retirement plans. Some companies and nonprofits deposit funds into retirement accounts, whether or not the employee contributes. Almost all the time (I’ve seen one case different), these funds are considered the employee’s upon receipt or after a certain amount of time worked. Consult with your family member’s employer to redirect those funds to income, or to develop a strategy to remove funds from the plan periodically and either spend them or fund an ABLE account.

  3. Payroll deposit accounts. Today, most wages are deposited electronically to a checking account. You will want to monitor these accounts for your family member. I have met with families where funds pile up – children get SSI and employment income and it’s easy for a bank account to accumulate more than $2,000. Have a system in place to automatically transfer funds to pay for rent, food, personal expenses and other regular, trackable expenses that support your family member. You can also send these funds to an ABLE, but remember there is a limit each year to how much can be put into an ABLE.

Recently, I consulted with a family with an adult son with autism who has held a job his entire adult life. His employers have loved him – he shows up on time, doesn’t spend too much time on office gossip and everyone can feel the value he brings and gets from his career. It’s the ideal.

For many of us, it’s unlikely our family members will have this same experience – transportation, training and abilities are hurdles that cannot always be overcome. I expect my other children to go to school, start careers and launch. Employment will be great for my daughter, and, like you I know that it is another area for me to engage and learn about how to do it best. I want her to make lots of money, fly across the country and, somehow, keep those benefits she needs to live a healthy, productive and entertaining life.


Rob Wrubel is a CFP who has a daughter with Down syndrome. He is recognized as a leading expert on financial planning for families with special needs members. Wrubel has written two books about financial planning and special needs families – Financial Freedom for Special Needs Families: 9 Building Blocks to Reduce Stress, Preserve Benefits, Create a Fulfilling Future and Protect Your Family: Life Insurance Basics For Special Needs Planning – and he has been published recently by and The Good Men Project. Wrubel holds the Certified Financial Planning (CFP®) designation, the Accredited Investment Fiduciary® (AIF®) designation from Fi360, and the Accredited Estate Planner (AEP®) designation from the National Estate Planning Council.

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