By Vivian J. Villers, CFP, AIF, CWS


Almost everyone knows someone who has a child with a disability. Maybe it is a friend, a client, or even a family member. For over 25 years, my financial planning practice has served special needs families.

Although I have two family members with a developmental disability (Down’s syndrome and severe autism), my focus on special needs did not start with any conscious intention or vision, but quite by accident. I was teaching basic financial planning seminars at a local adult education program, and one of the attendees – who had a 17-year-old child with a disability – became my client. Initially, my learning curve was huge, but now I have gained significant knowledge and have become a recognized authority.

My purpose in writing this series of articles is to help financial professionals be more informed and prepared to advise a family with a child with a disability. Let’s start with some basics. First and foremost, be sure to use politically correct language. A person with a disability is an individual first, regardless of the severity of their disability.

In the disability world, it is ALWAYS person first. Thus, it is NEVER “your autistic son” or “your disabled child.” It is “your son with autism,” “your daughter with Down’s syndrome,” or “your child with a disability/special needs.” Even if a parent does not use person-first language, you should be careful to do so. Also, in some circles, “disability” is preferred and “special needs” is frowned upon, although, in my experience, this preference is less pervasive. I use them somewhat interchangeably and adjust to my audience if needed.

Next, consider these statistics:

  • 88% of parents who have children with special needs have not set up a trust to preserve eligibility for benefits such as Medicaid and Supplemental Security Income.1
  •  69% of families say they are concerned about being able to provide lifetime care for their dependents with special needs.1
  • 60% of parents over the age of 65 have done nothing to prepare for the future care and support of their child with a disability. 2

Too many parents have done little or no planning to prepare for their child’s future. For me, it is personal. My sister-in-law was killed in a car crash coming home from the bank. There was no letter of intent, no trust or other legal documents, no plan for someone to provide care for my nephew. The chaos and disruption in his life could have been avoided.

I invite you to read my series of articles. Once per month, on the SPS Family blog, we will explore special needs financial planning issues, including:

  • rules of government benefits
  • difference between SSI and Medicaid vs. SSDI and Medicare
  • types of special needs trusts · what to do if you have money in the child’s name, such as UGMA /UTMA, a 529 plan, or a lawsuit settlement
  • types of life insurance used for a trust
  • ABLE accounts
  • choosing appropriate primary and successor trustees
  • health insurance rules including “self-funded” employer plans
  • creating a Crisis Kit
  • the critical issue of the Family Max when claiming Social Security Retirement benefits.

The need for competent advice to guide parents into taking action is significant. I hope that my knowledge and experience can help you.

1. MetLife’s Survey “2005 The Torn Security Blanket: Children with Special Needs and the Planning Gap” and updated with “2011 Torn Security Blanket Study”.

2. Nancy Webster, former President of The Arc of the United States. Quoted from a presentation at The Arc of Illinois. Used with permission.

Vivian J. Villers is a long-time Sigma Financial Corporation representative. For over 20 years, she has provided financial planning advice for families and individuals with special needs. Vivian serves on the Board of Directors of The Arc of Illinois and has two family members with disabilities. She is a recognized authority on special needs financial planning and frequently speaks on the topic to both families and professionals.

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