It takes awhile. Although the exact process varies from state to state, there are a lot of legal hoops to jump through before one can be named a legal guardian by the court, as your parents know or will find out. (When a child with severe special needs turns 18, most parents become legal guardians; without that designation, they lose most of their power to advocate for their adult son or daughter in numerous decisions that may come up in their child's life.)
To become a legal guardian, you'll need to hire an attorney, and you may want to find one who specializes in special needs; the nonprofit Special Needs Alliance has a locate-an-attorney page (http://www.specialneedsalliance.org/locate-an-attorney).
Consider setting up a special needs trust. Ideally, your parents have already started one. A special needs trust allows someone with a disability to receive money while still remaining eligible for Supplemental Security Income and Medicaid.
There are a lot of rules associated with a special needs trust that a layman isn't likely to know. For instance, someone has to manage the trust; even if a sibling with special needs is financially competent, he or she is allowed to take money from the trust. If they do, SSI and Medicaid will count that money as income. The money from a trust also can't be used as rent, since SSI income pays for housing.
A trust fund can also protect the sibling with special needs and ideally will be set up long before a brother or sister takes on the duties of legal guardianship. One of the most frightening stories Gruszkos says she heard about was of a parent who had two sons, one whom had severe disabilities and one who didn't. The parent left money to the brother who didn't have disabilities, reasoning that he would take care of the other son. But the brother got a divorce, and his ex-wife wound up with the inheritance intended for both siblings.
"This is the reality," Gruszkos says. "You can't just give all of your money to one sibling and assume he'll take care of the other."
Ease into caregiving. If you can, take over those caregiver duties from your parents selectively and gradually. It is a good idea for the sibling with a disability as well.
Rachel Chubinsky, 28, a sales assistant in New York City's fashion industry, says her brother, Daniel, 24, is "severely developmentally delayed." Daniel, who has an IQ level possibly as low as 35, lives with their parents, but in about five to 10 years, the plan is to move him into a residential home for the severely disabled. That way, Daniel's parents will be young enough to visit and get Daniel adjusted before someday, they no longer come by.
"They say it is far harder when a parent dies, and then the child is just immediately thrown into a situation that is new and scary for them," Chubinsky says.
Chubinksy isn't unnerved by the idea of caring for Daniel. "As a child, I always dreamed we would live together forever," she says.
But the idea of paying for her brother's care without any financial assistance is scary. Chubinsky says her parents have money saved, and everyone is hopeful they'll have saved enough. But forever is a long time, and Chubinsky has a wary eye on the future.
"I only hope that society continues to support these individuals in these residences," Chubinsky says. "Because in reality, no one can really afford what they need."