10 Must-have documents for parents of children with special needs

Documents

When planning for the future it is essential that you have all your document in order. As a general rule, we should keep our estate planning documents in a safe place, which is readily accessible in the event they are needed.

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

The information in the binder should be updated periodically to reflect changes in family circumstances, changes in the needs or desires of your child, and other issues that may assist your child’s future caregivers in carrying out their duties.

Here are 10 must-have document to keep in your binder:

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

 2. 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.  It can include such things as your child’s sleeping preferences, eating habits, and many other important aspects of your child’s daily routine.

While these items may be second nature to you, it is important not to take them for granted.  After all, in many cases, the future caregivers assume their role in caring for your child without having actually lived a day in your shoes.

3. Written instructions spelling out any wishes regarding final arrangements (burial, cremation, or religious services or other ceremonies that may be desired).

 4. Advance health care and financial directives such as powers of attorney, living wills, and health care proxies.  By having these documents in a binder which can be accessed when needed you can save your family the heartache and expense of a guardianship proceeding should you become incapacitated.

5. Copies of any trusts - special needs trusts, living trusts, or insurance trusts- that may have been prepared.  Remember, signed copies or originals may be needed to complete property transfers.  Thus, you should also provide information about where the original documents are kept.

6. 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 the names of any brokers, insurance agents, and investment advisors).

7. Guardianship papers for your special needs child, if any, and a list of advocacy organizations that may be helpful.  Also, write down any personal reflections or thoughts you may have about these organizations.

8. The names of government agencies or case workers that you may have dealt with.

9. A list of government benefits your child may receive, as well as copies of any filled-out application forms. (These application forms will help the future caregivers the next time they apply for benefits on behalf of your child; especially since the caregivers may not understand the complexity of these applications.)

10. Other miscellaneous papers, such as tax returns filed for your child, information about housing options, schooling, and photographs of the family.

The estate planning process, especially when parents are planning for the future security of a child with special needs, can often seem overwhelming.  But when you have taken the steps necessary to accomplish these objectives, it is a great sense of relief.

Bernard

Written on 2012/06/12 by:

Bernard

Bernard A. Krooks, J.D., CPA, LL.M (in taxation), CELA, is a founding partner of the New York law firm Littman Krooks LLP.  A nationally noted expert on special needs planning, he is past President of the Special Needs Alliance (www.specialneedsalliance.org), a national non-profit organization dedicated to assisting families with special needs planning and related issues.  Mr. Krooks may be reached at (212) 490-2020 or via email at info@littmankrooks.com. For other inquiries or more information on special needs planning, visit the firm’s website at www.littmankrooks.com
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  • Mary

    Great post! The Down Syndrome Congress has put together a great format for organizing this information and more – It’s called “Footprints for the Future”. Clearly, it’s relevant to families with a member who has any type of special need. It is a modifiable pdf format – and can be accessed for free here: http://www.ndss.org/PageFiles/118/footprints_for_the_future.pdf

  • Mary

    Correction – the resource cited in my previous comment was actually created by the ARC of East Middlesex and hosted on the Down Syndrome Society website. My apologies for the attribution error.

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  • mylindaelliott

    We figured out some of this was of huge importance during a disaster too.  During Hurricane Katrina families were displaced for months without the information to even get their children into school with appropriate services. At least those of us from Hurricane Rita had learned that from the parents from New Orleans.  But things you just know you will never forget aren’t easy to remember when you are stressed.  A binder with important stuff for your child is a must.

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