It is already a problem that disabled persons are taking care of themselves. The other issue is that some parents are worried that their children will share the same fate because the parents are already aged.
Joanne Collins worries about dying.
She thinks about it in the afternoon as she waits for her daughter to get off the bus.
She wonders who will cook dinner for Maureen and if they will let her watch Pokemon and Power Rangers on TV. She prays they will care enough to help Maureen take a bath each night and tuck her into bed.
Mrs. Collins and her husband have done all those things for their daughter since she was a little girl.
Maureen is now 52 years old.
“To us, she’s still a child,” Mrs. Collins, 76, says of her daughter, who is mentally retarded and has severe epileptic seizures. “I worry constantly. When something happens to us, what will happen to Maureen? This is just tearing me apart.”
In Ohio, the Collinses and thousands of aging parents like them have reason to be afraid.
These parents do not have it easy. They need help and they need someone to counsel them. The thought of death always lingering on your mind and the fear of what is to be can be very disturbing. It is quite a burden trying to fend for yourself and your adult child as well.
As a result, said the executive director of Sacramento’s Resources for Independent Living, Frances Gracechild: “We have this phenomenon of aging parents with increasing need for support themselves, and they’re still taking care of their grown developmentally disabled children.
“It’s quite a burden to meet when you’re facing your 70s.”
As they age, the parents of the adult developmentally disabled may need legal counseling to put together a special-needs trust to care for their offspring, and they may need advice on residential options, said Fran Smith, a Yolo County advocate for the developmentally disabled. Two of her children had cerebral palsy.
“I was always worried about what my kids would do when I die, but they both predeceased me,” she said. “Parents need a coach. They need somebody to help them. Thinking about what will happen to your grown child after you’re gone is painful.
If there are siblings with no disabilities then the mantle should be passed to them. The burden an worry is too much for the parents. They need to make all the necessary plans so as provide good quality care for their siblings.
“A growing generation of parents is now facing old age and the prospect that their children with disabilities will outlive them. As of 2006, more than 716,00 adults with developmental disabilities were living with caregivers over the age of 60 in the United States.”
You may need to take the initiative to talk to your parents about a plan for your sibling’s future. Your parents have cared for them and have tried to provide for the best quality of life that they could. As your parents are advancing in age, you can give them reassurance by getting involved in planning for your sibling with special needs.