A letter of intent is a blueprint of your child's situation and your wishes for your child when you are no longer there to carry them out. While not legally binding, the letter provides direction for the person or persons who will be caring for your child. You should start a letter of intent as soon as possible and update it as your child grows, including information such as:

Medical information about your child, including diagnosis, care and support the child currently receives, medications, emergency instructions, physicians, therapies, etc.

A "snapshot" of your child's capabilities in regard to daily living skills (bathing, dressing, toileting, money management, cooking, etc.).

Any special equipment your child needs, such as wheelchairs, shower chairs, modified computers, voice recognition software, utensils or plates, etc. Also who to contact to maintain this equipment or where to go to repair or replace it.

Education your child has received, as well as future education you'd like your child to receive.

Living arrangements…where would you (and your child) like for the child to live if something should happen to you? What happens when you just can’t physically care for him or her anymore? Indicate whether you feel your child can live independently or would be better in a group environment. Be aware this item may need a long lead time (years) to put into place for independent living, depending upon where you live.

Employment opportunities that you feel might be open to your child as a disabled adult.

Social/behavioral information, such as activities and the types of toys your child enjoys, who your child likes to play with, plus any behavior management issues, including how you discipline your child.

Dietary information, including food likes and dislikes, any special diet restrictions, problems swallowing, etc.

Religious information as appropriate.

In addition, the letter of intent should include the child's vital information (full name, nick name, place and date of birth, Social Security number), plus the name and contact information of anyone involved in your child's life, such as a caseworker, school or work contact, financial advisor, executor of your will and/or the child's guardian. It's also a good idea to either include a set of the child's medical records or make reference to where those records are located. Finally, provide financial guidance, including information on medical insurance, financial resources available to the child and who to contact for assistance/additional information.

The purpose of a special needs trust is to provide financial assets for your child's future care and well being, while maintaining the child's eligibility for government benefits.

Under current federal law, an individual with more than $2,000 in assets is disqualified from most needs-based government benefits. State assistance programs may also be based on need. If your child were to receive an inheritance from you directly, it's highly probable that the inheritance would disqualify your child from receiving needed benefits. Do not leave assets to the child directly.

With a special needs trust, however, you leave assets to the trust. The trust is managed by a trustee, who then can use trust assets on your child's behalf. Special needs trust requirements are stringent, so it's important that you consult with an experienced attorney in setting one up.

In a properly-structured special needs trust, the trust holds title to the property for the benefit of the disabled child or adult. The assets in the special needs trust can then be used to provide for the needs of the disabled individual, as well as to supplement benefits received from government assistance programs. For example, trust assets can be used for:

transportation, including purchase of a vehicle;

training, rehabilitation or education programs;

equipment;

medical, dental and eyesight expenses;

entertainment;

insurance premiums;

companion/home health aide expenses; and

items to enhance quality of life/self esteem.

A special needs trust can hold cash, as well as title to stocks, bonds, mutual funds, real estate and personal property. In addition, it can own and/or be the beneficiary of life insurance policies. Another use for special needs trusts is to receive any proceeds from personal injury settlements without jeopardizing eligibility for government benefits.

In order to retain eligibility for government benefits, it's important that wellintentioned family members, such as grandparents, understand that their will should bequeath assets to the special needs trust, and not directly to the disabled individual.