Being a parent is never easy. You want the best for your children and can’t help but worry about them—will they be healthy and happy, will they be successful, what kind of world will they live in? Those worries are only amplified when one of your children has special needs, as I know both from my own experience and from many years of working with clients.

1. Accept The Reality Of The Situation

The first, and often most difficult challenge facing many families in this situation is coming to grips with the realization that they do in fact, have a child with special needs. It’s not uncommon for such families to find themselves going through the five stages of grief identified by Dr. Elizabeth Kubler-Ross (denial, anger, bargaining, depression and acceptance), and that’s quite understandable.

I worked with one client who simply could not accept that his son had special needs and would not be able to follow the traditional path of school, college and ultimately a career. Planning for this child’s future has been a difficult issue for this family because they are still holding out hope that things will change, that he’ll somehow get better. But failing to face the reality of their situation can create even more problems down the line.

2. Have Someone To Back You Up

Financial planning is crucial, because not only is a child with special needs emotionally hard on the family but it also is an expensive proposition. Even before we get to financial considerations it’s important to face the most difficult question—who will care for this child in the event that the parents are unable to? It’s a question that many couples struggle with for all their children, but it becomes especially trying with a special needs child because they require so much more attention and care.

3. Create A Special Needs Trust

When it comes to financial planning for a special needs child, there are several things that should be done as early in the process as possible. Chief among these is setting up a special needs trust, even if the trust is not funded at inception.

Having a trust to hold any assets on behalf of the special needs individual is crucial to keep them from being disqualified from government benefits to which they might otherwise be entitled. The trust can be used as a holding vehicle for any property that might be gifted to that individual, such as a bequest in a grandparent’s will.

4. Make Sure All Your Documents Are Up To Date

After setting up a special needs trust the next step is to make sure your estate planning documents conform to your intentions and that the beneficiary of anything left to the special needs person is the trust rather than the individual. The same thing should be done for any beneficiary designations on any life insurance policies.

5. Have A Backup For Your Backup

Another thing to keep in mind is that the special needs trust is a long-term proposition and will likely need some updating in the course of time. When my family was faced with that situation, my wife and I named one of our closest friends to be the initial trustee. We did so with the intention that when our daughter, who is six years older than her brother, turned 30 she would have maturity and desire to step in and take over as the trustee.

6. Work With Knowledgeable Professionals

From my experience, both as a financial advisor and as the parent of a special needs individual, I know how important it is to work with an attorney who understands the regulatory ins and outs of setting up a special needs trust because if documents are not done correctly, that could disqualify that individual. The same is true for any other professionals you may engage, such as an accountant, because preparation of the tax return for a trust can be a lot trickier than a personal one.

Having a special needs child can be difficult, but with proper planning and the help and support of friends and family it can also be extremely rewarding. Take it from someone who knows.  

Kenneth Van Leeuwen, CFP, is managing director of Van Leeuwen & Company, a wealth management firm he founded in Princeton, N.J. in 1997.