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:
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
Amanda Singleton
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