A parent's worst nightmare is dying when his or her children are still young and need to be nurtured. Who will care for them? Where will they live? Will there be enough money to see them through college?
As wrenching as this may be, it is nothing next to the planning involved when the child or children are disabled. Instead of planning for the child until he/she gets the first job, you're planning for a lifetime of needs-from food, shelter and clothing to shampoo, medicine, equipment and vacations. While we are alive we see to it that our children are taken care of. How will this happen after we are gone? Personal resources? Family? Government benefits?
Special needs "estate planning" is better often termed "estate creation." This is especially true for those of us who don't start out with a substantial personal estate. What every parent needs to know is that there are two major issues to planning for a special needs child: legal and financial.
Most people are quite familiar with what is known as a will or a living trust, but what about a special needs trust? This trust is used to protect eligibility and access to government benefits while being able to utilize the family resources. There are some very specific requirements in setting up this document so it is important to hire an attorney whose expertise is in special needs estate planning.
Just as your attorney needs to have this expertise so does your financial advisor/planner. Knowing how to fund this trust is just as important as the trust itself. How much is enough? What if I have other children to plan for? Will the family assets be enough? If the answer to this last question is "no," then some form of life insurance may be a terrific solution. Life insurance is usually probate free, income tax free and if done properly, can also be estate tax free. There are many products and even more insurance companies. To properly fund your trust using life insurance you need to know the pros and cons of each product as it relates to your personal situation. You must also be aware of the ratings of the insurance company from which you are going to purchase. These ratings include A.M. Best, Moody's, Duff and Phelps and Standard and Poors. One must also see to it that a formula is used to determine an appropriate amount to fit the needs of the child. Because the coordination of the financial and legal documents is so crucial, it is important that both advisors are special needs professionals who can work as a team.
How many of us either don't have or even know about a letter of intent? It is a document detailing your child's medical history, past and present, and future needs for daily care, housing and services, as well as your specific wishes and expectations as they relate to your child's future. It is a working document for the future caregiver to be able to follow and make care a little simpler. As a parent of a special needs child, I feel this document can be the most important part of the plan.
As a parent and professional in this area of special needs planning I understand how very difficult this process is and know firsthand the maze of information you must work through. S.N.A.P. (Special Needs Advocate for Parents) is an organization which I founded to provide help to families addressing these and other important issues as they relate to having a special needs child. If you would like more information on the subject of estate planning or S.N.A.P.'s other services please call us at (310) 470-0796. We look forward to hearing from you!
"We Life-Flighted him to the nearest hospital." "She's had fifteen surgeries already and she's only two years old." "We can't get him to eat a thing!" "Retardation, I don't think so!" "They should change the acronym!" These are just a few memorable comments made by family members attending the Second International CHARGE Syndrome Conference held at Louis and Clark College in Portland, Oregon, July 21-23, 1995. (CHARGE-coloboma, heart disease, choanal atresia, retarded growth and/or development, under developed genitalia in males, ear deformities and/or deafness) Families from points around the globe including Australia, New Zealand, the United Kingdom, the Netherlands, White Horse, Yukon, Canada, as well as families from every corner of the United States made the pilgrimage to Portland for this year's CHARGE Syndrome Conference. Eager to rekindle friendships or to meet each other for the first time, families braved the highways, the railways and the airways to share the experience. More than 50 families were in attendance.
Professionals representing the fields of pediatrics and genetic research shared information about the latest findings relative to CHARGE. "Is it a syndrome or is it an association?" Both terms were used by the professionals during the presentations, and no clear description of the two terms was ever given. "Has the cause of CHARGE been determined?" Not yet! Researchers are looking closely at genetic causes. Scientists have already identified the genetic causes for other syndromes with similar features, specifically choanal atresia (no opening in the boney structure behind the nose). Geneticists consider this information to be an important indicator of where on the DNA structure to look. It is strongly suspected that a genetic cause for CHARGE will be identified.
The format of the conference allowed for a great deal of interaction between the parents and medical professionals as well as between each other. During the open forum family members discussed issues ranging from coping with life-threatening medical conditions, feeding problems and balancing the needs of all family members, to how to best educate children with CHARGE. The discussion with medical professionals and researchers focused on the features of CHARGE-especially the issue of retardation. Some of the parents thought the acronym should be changed to CHARGED. This would change the meaning of the R to renal problems and the D would mean development. It is true that many children with CHARGE achieve academic and intellectual levels at or near normal, even higher in some cases. However, there are also children with CHARGE for whom retardation is a reality. Retardation is one of the hardest issues for parents to deal with. After seeing their children through many life-threatening conditions, some times years in the hospital, retardation or the possibility of it brings the strongest parents to their knees. The lack of understanding about retardation and the social stigma attached to it sets up seemingly insurmountable barriers to children and their parents. It may be helpful for parents to remember that retarded does not mean stupid. It means the child learns at a slower rate than their peers, and childrens' achievements are often consistent with what is expected of them.
Feeding problems was another area of discussion that elicited comment by almost every parent at the conference. Some children have medical conditions that prevent or impair swallowing or digestion, but a majority of children do not tolerate anything in their mouths. No one had an explanation for this and the medical advice from the panel was for parents to "harden their hearts and be aggressive." As a parent this was hard to hear. It is not easy to force feed a child you love so dearly.
Educational issues prompted more lively discussion. Many parents were interested in inclusive educations for their children. Others were more comfortable with the protective environment of a Special Day class. Everyone was interested in learning how to enhance the communication skills of their youngsters. There were no educational professionals on the panel and the medical professionals did not feel it was within their areas of expertise, so their comments were few. This would be a good topic for the Third International CHARGE Syndrome Conference to be held in Boston in 1997. In addition to presentations and discussions, a clinic was held in which approximately 45 children participated. The doctors examined each child, noted features, answered questions and made recommendations to parents. Blood was also drawn from each child. This blood will be studied by researchers to help determine the cause of CHARGE. This was the first time such a comprehensive collection of information has been available.
The conference was not all business, however. All of the participants attended a picnic at a nearby park with play equipment, ducks and a stream. Boxed lunches were provided for everyone. The picnic provided an opportunity for families to get to know each other and for children to play together. Organized games and competitions for children became a photo-ops for parents and conference planners.
A panel of adults with CHARGE concluded the conference. It was an inspiration for all family members to see the high levels of accomplishment made by the panel members. Families returned to their homes full of renewed vigor and hope for the future.