Caregivers wonder what will happen to their loved ones with disabilities when caregivers die

From The AP:

ROCKY MOUNT, N.C. — The future sometimes worries Mary Battle.

It is not her future she is concerned with as much as those of her son, niece and nephew.

Battle and her husband, Robert Battle Jr., have been caregivers to their son, Edward, 40, his entire life. They also have cared for Robert Battle's niece, Angela Battle, 38, and nephew, Nathaniel Battle, 40, since 1983. The three adults have varying degrees of mental disability.

The Rocky Mount Telegram reported that as long as the Battles are well, she knows what life will be like for her adult charges. But what would happen to Edward, Angela and Nathaniel Battle when the couple dies? Even though the Battles have been considering the eventuality for 10 years, the idea still concerns Mary.

"I want to make sure that they are taken care of. ... I know they have been with us all of their lives practically, and if something happened to us then I don't know," she said.

Medical advances mean an increasing number of people with developmental and intellectual disabilities are living to old age, said Leigh Ann Kingsbury, author of "People Planning Ahead." While this is good it means a parent or family member needs to decide what would happen if he or she died and the loved one wasleft alone.

People don't want to think about dying, but it is necessary when they are responsible for someone who is totally dependent on their care, Kingsbury said. In her experience, it is too common for elderly parents not to have made enough plans for adult children with mental disabilities.

"To be fair, there are also lots of families that have done a lot of planning. There are lots of times when it goes really well. But there are certainly a good number of families that are pretty confident in how it will happen, and it isn't exactly what people were thinking," said Kingsbury of New Bern.

Potential problems include planning for a disabled person's financial future and where and with whom he or she will live, Kingsbury said.

These are questions Magnolia Edge and her husband, Paul, had to ask themselves in 2006 when he was suffering from kidney failure. The couple wanted to have plans in place for the care of their youngest son, Barry Edge, who has Down syndrome.

Before Paul Edge died in February 2007, he and his wife talked with their other children about Barry's future. Their daughter, Constance Artis of Winterville, has agreed to take care of her little brother, now 50, if something happens to their mother. If she is not able to, their sister, Irma Edge, will care for him.

It will not be an easy responsibility, Magnolia Edge said. Her son can feed and clothe himself, but she still has to bathe and shave him, prepare his meals and monitor him. They are things she has been doing for him for 50 years, and her other children are aware of what caring for their brother involves.

"We made our plans, and I think our plans are sufficient," Edge said.

It wasn't sickness that made Mary and Robert Battle start thinking about the future 10 years ago — it was age, he said. At 50, Robert Battle felt like it was past time to make plans for his son,niece and nephew. He knew too well how quickly things could change.

In 1983, the Battles already had four children when Robert learned his sister had cervical cancer. She asked the Battles to take care of her four children if she died, and they agreed. The couple raised the eight children as one family.

Though Mary and Robert Battle only recently started making wills, they already talked with their children about care for Edward, Angela and Nathaniel Battle. Robert Battle asked one of his nieces to move in and care for the three adults and one of his sons to help. Both agreed.

If that doesn't work out though, the Battles' back-up plan is a group home, but it is not preferable, Robert said. Of course, he would rather keep the three together in the home where they have grown up, but more than that, he worries about the care they would receive from non-family members.

"With Edward and Nathaniel, they don't speak, so they can't really communicate and tell someone what is going on. Angie talks and she pretty much can speak up for herself. If they were verbal, I think I would feel a little more confident," Robert Battle said.

The planning process does not have to be as daunting as people think it is, Kingsbury said. It helps to take it in stages.

First, families should decide where and with whom the disabled person will live after his or her guardian dies, Kingsbury said. Family members who have cared for people their whole lives will best know them and what they need, making them the preferred decision makers.