14 Tips on How Parents Who Have a Child with a Disability Can Organize Their Estate

As a general rule, parents should keep their original documents (wills, special needs trust, etc.) in a safe deposit box, in a fireproof safe, or with their attorney.

Parents should also use a binder that contains all the information that future caregivers will need to carry on after the parents are gone.

The binder should be kept in a place that is readily accessible, so parents can update it periodically, and so the people who will act as the child's advocate after the parents are gone will be able to find it. Many parents purchase small fireproof safes for this purpose.

The binder should generally contain separate folders in which parents place the following:

1. An overview of the estate plan in plain English – that is, without any legalese, that the attorney should write.

2. Important legal papers for any children with disabilities (for example, birth certificates, Social Security cards, and health-insurance cards).

3. A description of the goals and purposes of the special needs trust, which the attorney should write.

4. A copy of the Letter of Intent, which parents should update at least once per year. The Letter of Intent is a nonbinding document that passes vital information about a person with a disability to future caregivers.

5. Unsigned copies of any wills.

6. A letter spelling out any wishes regarding final arrangements (burial, cremation, or religious services or other ceremonies that may be desired).

7. Living wills and / or Power of Attorney for health care that may have been prepared.

8. Extra signed copies of any trusts- special needs trusts, living trusts, or insurance trusts- that may have been prepared. Remember, signed copies will be needed to complete property transfers, and additional signed copies will prove to be useful.

9. A list of major assets and information about where they are kept (for example, a list of insurance policies, stocks, mutual funds, bank accounts, with policy and account numbers and storage locations, and the names of any brokers, insurance agents , and investment advisors).

10. Guardianship papers, if any, and a list of advocacy organizations that may be helpful.

11. The names of government agencies or case workers that the parents may have deal with and the parents' thoughts about them.

12. A list of government benefits that the person with a disability may receive, as well as copies of any filled-out application forms. (These application forms will help the parents the next time they apply for benefits and will be especially helpful to future caregivers who may not understand the complexity of these applications.)

13. Other miscellaneous papers, such as tax returns filed by the person with a disability, information about housing options, schooling, photographs of the family, parent's Social Security numbers, parent's birth and marriage certificates, certificates and awards for the person with a disability .

14. Information about where the original documents are kept.

The estate planning process, especially when parents are planning for the future security of a child with a disability, can often be heart wrenching. But when parents are through, they can feel confident that they have done all that they can to secure their child's happiness after they are gone.

Copyright (c) 2007 L. Mark Rusell