It is important to articulate your own values concerning money in the context of your vision for the future of your child with special needs. You need to make sure the people who you expect to implement your plans understand very well what they are. This is something many people find to be a difficult and even daunting task. Here are some tips for making the process go smoothly.
Bringing Family Members into Your Discussions
There are many ways to discuss your vision and your finances. It is often easiest to begin this process in a gradual manner and in an informal environment. Although it is important to have all family members in agreement, scheduling initial discussion in a formal meeting or a large family setting is not always the best.
We recommend that you speak to one child at a time, to get their feelings about their willingness to help. This will offer them an opportunity to share ideas with you, rather than you telling them what you are hoping will happen. Remember, caring for a family member with disabilities is a lifetime commitment that you do not want to force on anyone, yet it is important for them to understand your intentions.
After everyone has had an opportunity to discuss their feelings and ideas in an informal way, you may wish to plan a discussion with everyone at once. Since every family's dynamics are unique, you will find the best way to communicate with your family. The following steps should help to move the communication process along smoothly:
* Share you vision.
* Talk about the best person to take on each role. For example, who is the best with finances? That person may be a good trustee or trust advisor of a special needs trust (for more information on selecting a trustee, see Chapter 9 of our book "The Special Needs Planning Guide"). Who is most involved in the day-to-day- life of the child? That person may be a good guardian.
* Ask family members if they feel able to perform their roles independently. If not, design your plan to give them resources to work with. For example, let them know that they could hire an investment advisor to help with the trust management or a social worker to help oversee supports.
Talking about money
In our combined 30-plus years of planning, one of the biggest obstacles that we have encountered is that people do not feel comfortable talking about how much money they have or the specific costs of providing services to individuals with disabilities.
Sometimes parents feel that they must treat all of their children equally. They feel that their children expect it. In many cases, however, siblings understand the financial realities and would rather make sure that their brother or sister is taken care of.
One the first steps necessary for you to be able to achieve financial security for your child is to overcome the reluctance to discuss the issues of money. We all know that it takes money to pay for services, staff, housing expenses, employment supports, transportation educations, health care services and the like. We also know that government does not have an endless supply of money to fund these services.
Talking to your family members about these important issues, and bringing them into the process of finding solutions, is so important.
Special Needs Planning Pointer
Share your Special Letter of Intent with family members and caregivers. A fill-in-the-blank version is included with our book, The Special Needs Planning Guide. Parents should make a point of completing one and keeping it up to date. Now is a good time to share it with future caregivers and make it a living document. Do not just leave it up to others to figure everything out after you are gone. Preparing this document in advance is a priceless gift that only you can give.