If you are a parent, stepparent, grandparent or caretaker of a special needs child you need to prepare for the day when you are no longer able to physically and financially care for your special needs loved one. While it is not suggested that you stop caring for the special needs loved one today, there is no better time than to start your planning than now and to actually try it out, so as to cure any unanticipated issues now while you still have the mental, emotional and financial wherewithal. First on the list of priorities is to find a standby guardian who can step in and care for your loved one without complication, so as to insure a seamless transition. Better still is to have two caretakers who can assume responsibility for the day to day needs of your special needs loved one. This blog has discussed the wisdom and utility of a standby guardian.

While it is essential for you to discuss these plans with any standby guardian and alternate standby guardian, as any legal responsibility to assume guardianship requires the consent of the standby guardian, it is always best to discuss these decisions with your loved one. Many autistic children do not deal with change very well. As such, having the standby guardian come in to run the show and do what you do on a daily basis is best. The same applies for any alternate standby guardian. It would also be best to discreetly disclose your financial planning, income and expenses with the standby guardian as well as any alternate. Any monies coming in from public agencies or even benevolent societies as well as a review of key service providers would be necessary for the standby guardian to understand if you become incapacitated, disabled or otherwise unable to provide the same level of care that you currently provide for your special needs loved one.


Next on your list of priorities should be the creation of a special needs trust. Trusts are no longer a monopoly of the rich or even well to do. Special needs trusts (as well as many other trusts) can be created with very little seed money and income. It is critical to note at the outset that government agencies and Courts are unforgiving with the exact method and means to creating a special needs trust. An experienced elder law and estate planning attorney is critical, practically indispensable, in this regard. You can gift money and assets, significant or otherwise, to your special needs child via the special needs trust without risking any governmental benefits that qualify via means based testing.


You should also speak with your special needs loved one that someday you will also need caretakers and will not be able to see them on a daily basis to help them celebrate their daily joys. They should also be aware of any changes that you will be experimenting with and that others will be taking care of them from time to time to see how good of a fit both the caretaker is as well as your sepcial needs loved one. Finally, it may be best to let them know that in the future they may have to visit you in an environment different from what they are used to.

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