As Parents Age, Future for Disabled a Worry

Pair builds facility; need grows in US

By Tatsha Robertson, Globe Staff, 5/28/2001

LIO, Mich. - Lois Montague takes a handful of baby wipes and rubs her son Jerod's body before snapping on his diaper. As she brushes his hair, a grin spreads across his face, and he lets out a deep-throated, manly laugh. A thunderous roar. ''Hey, pumpkin,'' says his mother.

Jerod is an alert, 28-year-old man with whiskers on his chin. He was born with cerebral palsy, which has left him unable even to feed himself or roll over.

But, thanks to recent medical advances, he is as healthy as he is dependent. So the Montagues, like thousands of other parents caring for severely disabled adults, have come to a joyful yet troubling conclusion: The child who depends on them for survival will probably outlive them.

Jim and Lois Montague, fiercely independent and religious to the core, have found a way to care for Jerod even after they are gone. In the middle of a former cow pasture and a stone's throw from their farmhouse is the start of a 11,000-square-foot group home they are building for Jerod and eight others like him.

Disabled adults such as Jerod are living longer, but appropriate long-term care for them is hard to find. Those parents wanting their disabled children to live in residential facilities can be put on waiting lists with nearly 90,000 others. As a result, countless parents who should be planning their retirements are sacrificing everything to care for their disabled offspring at home.

According to the University of Illinois at Chicago, 480,000 adults with disabilities are living with parents who are 60 years of age or older. And many of these parents do not know what will happen to their disabled children once they have died.

''This is a big worry for families everywhere,''said Sharon Davis, an official with Arc, a national advocacy organization for the mentally disabled.

One troubling scenario has become too common, said Alan Factor, deputy director at the Rehabilitation Research and Training Center on Aging at the University of Illinois. ''Johnny comes home from vocational school and his mom or dad is lying on the floor dead.''

If that parent has not made plans, said Leo Sarkissian, executive director of Arc Massachusetts, most disabled adults end up in respite or emergency care until the state can figure out what to do. At least 12 percent of the time, a sibling steps in. But all too often, they end up in an institution.

The problem is so widespread that Arc Massachusetts is publishing the second edition of a book it created to help parents plan.

The University of Illinois is collecting information on how some families are doing it. Davis established a trust fund for her 35-year-old mentally retarded daughter. Other parents are joining together to create ''pool trusts,'' which are managed, invested, and distributed as one account.

Others are buying apartment complexes together, said Factor, or paying for a guardian to look after a son or daughter when they are no longer alive.

For as long as they can remember, the Montagues, who run a manufacturing company in this town just north of Flint, dreamed of building the home they now call ''Kindred Spirits.''

Early on, Lois Montague knew something was wrong with her first child. She watched her toddler, who was as happy as could be but who couldn't walk without clinging to furniture.

''He wasn't progressing,'' recalled Montague. ''He would not take a step on his own.''

It took doctors more than four years to put a name to it. As Jerod grew older, his spine began to curve. Doctors said the curvature would not stop until his chest and knees met. But extensive surgery allowed him to sit 8 inches taller and extended his life.

Despite medical advances, the Montagues struggled to find appropriate care for Jerod. Finally, Lois Montague, frustrated by the lack of good help for her son, kept him close to her side.

The two became inseparable. When her husband bought her an aerobics studio 10 years ago, she brought Jerod there, and he would crawl on the floor among the exercisers.

In the morning, she shaves his face as he lies in bed, and she sits him nearby as she reads the Scriptures at the kitchen table. And now, when the Montagues must travel for trade shows, they buckle Jerod, who weighs 80 pounds, into their sport utility vehicle and take him along.

But as the Montagues began making plans to build Kindred Spirits, they could not find a temporary place to keep Jerod. They called David Gage, who at the time ran a facility in Grand Rapids.

''We were just not set up to do it,'' recalled Gage. ''If we had taken Jerod, he would have required 80 percent of the time of the people on duty ...It was heartbreaking to keep saying no to these families.''

The Montagues kept their faith and considered Gage's comments more of a reason to complete their mission. They eventually hired Gage as the director of Kindred Spirits.

When their daughter finished college, they began sacrificing everything for Jerod's future. They continued to pay their employees at their manufacturing company, but stopped paying themselves.

''We like to say, `The Lord sews the holes from the bottom of our pockets,''' said Jim Montague, 56. But their pockets are very light; most of the money made from the family business is poured into the group home that so far has cost them $2 million.

Still, the Montagues expect to complete Kindred Spirits in less than a year, without debt. The money that would have been used to pay off loans will be used to hire round-the-clock staff. The residents will need to use only their Social Security disability benefits, which total about $800 a month in Michigan.

They have been fortunate, said Gage, the director. The locals in this close-knit old lumber town have come to their aid, donating everything from bricks to labor. Although he and his wife are still seeking contributions, Jim Montague said he knows most couples with a disabled adult child would not be able to knit such a safety net.

Becky and Harlan Vandebunt, who live a two-hour drive away in Grand Rapids, have been searching for answers themselves. Their 22-year-old son, Christopher, is a 200-pound, robust young man, but he needs help feeding himself and rising from a chair.

Like the Montagues, Becky Vandebunt found herself with few options as she begin looking toward the future. The Vandebunts have a 23-year-old daughter, but she has a family of her own now.

''Chris might outlive our youngest grandson. Yet, on the other hand, when that time comes we want to know Chris is in a good place,'' she said.

They heard about the Montagues, and not long ago brought Chris to see the group home. Now, they see their son's future there.

''When we left that home I turned to my husband and said, `that home is being built by someone who knows,''' she recalls.

Lois Montague, who dreams of building two more group homes, allows a sigh of relief now. Soon, her son's future and the future of several other disabled adults will be secure.

She relays this to Jerod without words. When the sky is clear, Lois Montague, who is a pilot, straps Jerod into the passenger seat of a small plane. The mother and son glide over acres of cornfields, and she looks below and points to what will one day be his new home.

This story ran on page A1 of the Boston Globe on 5/28/2001.
© Copyright 2001 Globe Newspaper Company.

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