If you’re worried that your child will not be capable of full employment due to cognitive or other limitations in addition to blindness, you are probably facing a dilemma. Most parents want to provide some kind of financial support for their child after they are gone—whether deceased or disabled themselves—since most government benefit programs such as Supplemental Security Income (SSI), Medicaid, Social Security, etc., are insufficient for providing the quality of life most parents want for their child. So they naturally think about leaving some funds to their child to offset the quality of life deficit that usually exists.
Unfortunately this is where most parents discover a dilemma: any funds above $2,000 left to a child will generally disqualify that child from receiving SSI and Medicaid benefits, the two primary benefits that support our multiply disabled children. So what is a parent to do?
There is a perfectly legal way to leave substantial funds for children with special needs while still maintaining eligibility for the various government benefits so critical to their welfare and quality of life. The now generally accepted way of doing this is to set up a legal device called a “special needs trust” (SNT) which not only allows continued eligibility for government benefits but also provides additional benefits such as added security for the funds, professional money management, and protection of the funds from creditors and lawsuits against the child.
Once such a trust has been established the parent or anyone else (grandparents, siblings, aunts, uncles, etc.) can now leave funds to the trust, which will then make payments for the benefit of the child. The person or company who manages the trust funds (known as the trustee) must have complete discretion to make payment decisions on behalf of the child.
So then, should all parents just establish a SNT for their child, which will then take care of everything? You might be thinking that it can’t be that simple and if so, you would be right. There are actually 12 total steps that parents should take (including establishing the SNT).
Why Would We Want a Special Needs Trust for Our Child?
The following are some of the common planning issues and goals that many parents of children with multiple disabilities have:
- To provide for lifetime supervision and care since someone else will need to step into the role that most parents fill during their lifetime.
- To maintain all government benefits that provide for basic living expenses (SSI, social security) and coverage for medical care generally with Medicaid.
- To guarantee “supplemental” funds are available so that a meaningful quality of life is maintained.
- To provide for a long-term strategy to safely invest and manage whatever funds are left to the SNT for the life of your child.
- And finally, to avoid the family conflicts that can arise when other children and second families are often involved in the family dynamics.
Now we will look at each of the 12 steps that parents need to focus on to assure that they have comprehensively (through a Life Plan) examined all aspects of their child’s future care needs before they can finally establish and then fund their child’s SNT.
For those parents who simply want to get an idea of where they stand regarding their existing plans please take the time to review the Life Plan Checklist.
CAVEATS AND DISCLAIMERS:
The information provided here is not intended to be exhaustive on the subject of special needs planning. Entire books have been written on this subject so the objective here is more limited in scope. It is our intention to provide sufficient information so that parents have a general understanding of the main issues involved and then know what steps need to be taken to achieve their goals for their child by creating a Comprehensive Life Plan. Where legal terms and devices are discussed such as special needs trusts, wills, guardianship, etc., it should be understood that this is not intended as specific legal advice and accordingly, each family is always advised to obtain appropriate legal counsel when implementing these elements of a Comprehensive Life Plan for their child with special needs.