Guardianship for Disabled Children
The disabled may be the frail elderly. They are also children with cerebral palsy or autism. They can be persons of any age who suffer traumatic brain injury from an auto accident, a work-related injury or medical malpractice at birth. Lest we forget, they can be mentally ill as well.
What distinguishes each category is the manner by which care is funded. For the elderly, it is important to understand that Medicare does not provide the safety net many assume it does. Medicare should pay for acute care and rehabilitation, but not for custodial care. For example, a stroke victim who is hospitalized will receive acute care and then be sent for rehabilitation. At some point, even if the victim is wheelchair-bound, that patient is no longer covered by Medicare. The cost of care for home health attendants, for example, is paid by one of three sources: by long-term care insurance (which few carry), by the patient and his/her family, or by Medicaid.
The rubber meets the road for the disabled child when he/she ages out of school (usually special education) at age 21. Where does that child go next? Getting into a day program or a residence or a sheltered workshop is a far different regulatory world from the world of special education. It is a world where Medicaid eligibility is often critical.
Often, parents overprotect their older disabled child, even as they age and become feeble and need help themselves. They fit the title of a talk Mr. Kruger once gave — “Parents Who Are Afraid to Die.”
To attempt to help parents and families, Robert Kruger and several colleagues have formed a not-for-profit corporation to deal with these transition problems. Torre Rock Advocates, Inc. was created to assist families in finding resources for disabled family members.