After a lifetime of caring for their child at home, parents of children who are intellectually and/or developmentally challenged don't want to give up their authority to strangers, but what happens if they haven't established plans for when they are too sick to provide care or have passed away?
For decades in their homes, many families have provided full-time care for family members who are severely disabled, without accessing in-home social services. They may have resisted tapping into government programs or didn't trust others to help. Some have cared for children with multiple disabilities who don't fit into supported housing scenarios. Whatever the case may be, parents should not hesitate to find out what they can do to provide for their adult child with special needs when they are gone.
With a 10-year wait for home and community-based programs in Texas, it often takes a crisis such as the death of a parent, a medical emergency or another tragic event to get priority on the waiting list.
Establishing a decision-making process during the parents' lifetime reduces distress for the adult child who is disabled when transitioning from home to community services.
If the adult child does not have the requisite capacity to execute advance directives, then a guardianship will need to be established for decision making. Putting a guardianship in place ahead of time, during the parents' lifetime, eases the transfer of decision-making.
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Elder Law: Special Needs Adult Children Need a Plan for Their Future