Caregiving for my disabled daughter as I get older

[MichelleG984827]

I have a different kind of caregiver situation.  I am the caregiver for my adult daughter, who has been disabled since age 15.  She has never worked and is not able to live alone.

I'm concerned about setting up a special needs trust or some other kind of trust for her so that when I die, my house and any balance in my retirement fund can be passed on to her for her support but without her getting it all at once and also not losing a bunch of it to probate costs, not to mention making sure she doesn't give it away to some scam artist, etc.  I have friends who are about 15 years younger than I who are willing to allow her to live with them or help her get into other suitable housing but I just don't know how to put all of this together legally.  My income precludes me from paying a lot of expensive legal fees.  Are there legal services available for people in my situation?

[AmandaSingleton]

Hello @MichelleG984827, and thank you for your question.  You are not alone; there are many parents who are caregivers to their adult disabled children.  My parents-in-law cared full-time for their firstborn son into their seventies and his mid-forties.  Planning ahead for our loved ones with special needs requires a bit more planning to ensure their security in case the primary parent or caregiver passes away.

I would strongly suggest you explore this with an attorney who is versed in this area of law.  Their knowledge base needs to include SSI, SSDI, Medicaid, ABLE Accounts, federal and state tax, and your state's guardianship, probate, and estate planning laws (and more). The ideal for your daughter will be a well-crafted plan where you've set forth your intentions for her to have her needs met and named guardians in place, but that doesn't compromise any public benefits she may be receiving/in need of.  

Have you begun the search for attorneys in your state of residence who practice special needs trust law and estate planning?  In general, pro bono services and nonprofit organizations do not service estate planning-type issues so you may be hard pressed to find a completely free service to assist you.  There may be "low bono" attorneys in your area who practice these areas and offer a reduced rate.  And there may be attorneys who accept payment plans or financing.  It's all worth looking into.    You can call your state or local bar associations to see if they have a referral program to help you begin your search.

Also, you may find information on these websites helpful in your search:

• National Academy of Elder Law Attorneys
• Academy of Special Needs Planners 
• Special Needs Alliance 
• The Arc

Wishing you the best of luck.  Please keep us posted and continue to share your wisdom and experiences as the caregiver of an adult child.  Thank you, Amanda 

[MichelleG984827]

Amanda, thank you so much for your extremely helpful reply. 

This really says it all:  "The ideal for your daughter will be a well-crafted plan where you've set forth your intentions for her to have her needs met and named guardians in place, but that doesn't compromise any public benefits she may be receiving/in need of."

I will explore these resources right away and share what I learn to help others.

[AmandaSingleton]

Thank you so much, @MichelleG984827 !  Wishing you the best! 

[JaneCares]

Amanda is the best. That is all. 😉

Jane

[AmandaSingleton]

Oh, go on, Jane (no, really; I love compliments!).   I think you're the best too.  : )