PLAN for disabled adults

Wednesday, April 21, 1999

PLAN for disabled adults

Planned Lifetime Assistance Network helps parents to be ready when they can no longer care for a child

Richard Neidhard of Monfort Heights is 73, and he worries. His 47-year-old son, Tom, spent most of his childhood in various special schools and residential programs because of mental and behavior disabilities, and until 18 months ago, he had never lived on his own.

Eugenie Montgomery of Hamilton worries, too. She's in her 70s, and her 46-year-old daughter, Pamela, who has Down syndrome, has been cared for all her life at home.

CAREGIVERS ARE AGING

According to information provided on aging and disabilities to a U.S. Senate Select Committee on Aging:
• In 1996, 60 percent of people over 40 with developmental disabilities were living with family caregivers over 60. The number is expected to double by 2030.
• Ohio estimates that 21,100 adults with developmental disabilities live with a family caregiver over 60, a number also expected to double as baby boomers age.
• Life expectancy for some with a developmental disability has increased to 66.2 years in 1993, compared with 59.1 years in the 1970s and 18.5 years in the 1930s.
• Life expectancy for someone with Down syndrome was 55.8 years in 1993, compared with 30.5 years in the 1960s and 9 years in the 1920s.

“I like to think I've got a lot of years ahead of me,” Mr. Neidhard says with hope, “but there a lot of people younger than me passing away.”

Many parents in their 60s, 70s and 80s are wondering what will happen to their adult, disabled children when the parents die or are no longer able to care for them.

Next week, a coalition of agencies throughout Hamilton, Butler and Warren counties offer the first of what they hope will be a series of informational meetings to help parents learn about options on caring for and providing financially for their adult, disabled children.

The effort is organized through a recently formed non-profit organization called PLAN of Southwest Ohio, which stands for Planned Lifetime Assistance Network.

Once in full swing, PLAN hopes to be an organization around which parents can arrange to see that their children are housed, fed, checked on regularly, able to pay bills and given access to existing services like crisis counseling, job counseling, social outings, regular telephone contact, etc., when parents are no longer able.

Learn their options
“There are options for people,” says Kathy Morris, life planning coordinator with the Butler County Board of Mental Retardation and Developmental Disabilities (MRDD). “But many of them just don't know what all their options are, and that's one of the things we want to get across to families. There are options and places to go and people to talk to about this.

“Families need to be able to take that first step,” she says. “It's always the hardest.”

IF YOU GO

• What: “Life Planning and Trusts for People with Disabilities,” a four-track workshop sponsored by Planned Lifetime Assistance Network (PLAN) of Southwest Ohio. Participants can choose one of four topic areas on how to arrange for services and financial plans to care for a disabled person when family members are no longer living or able.
• Who/When:

Families and caregivers: 7-9 p.m. next Wednesday or April 29; or 9:30-11:30 a.m. April 30 (choose one two-hour program).
Agency/provider staff and personnel: 9 a.m.-noon or 1-4 p.m. April 29.
Financial/estate planners: 8:30 a.m.-4:30 p.m. next Wednesday.
Attorneys: 1-5 p.m. April 30, on establishing life-care trusts. $50 fee.
• Where: Butler County Mental Health Board, 5963 Boymel Drive, Fairfield, off Ohio 4 about 2 miles north of I-275.
• Information: Family/caregivers can attend free. Reservations, 631-9500 (PLAN) or call 867-5680 or (800) 874-0268.

PLAN also will hold programs next week to help agency caregivers, attorneys and financial planners learn how to set up wills, trusts, estates and care plans that can provide the specialized legal and financial wherewithal to care for disabled adults.

It's a difficult but necessary task for parents, says Mr. Neidhard, past president of PLAN. Many don't want to burden other family members — physically, emotionally or financially — with the care of a disabled sibling, but they do want to make sure their disabled children are cared for in environments similar to what they're accustomed to.

His plan for Tom, which includes a trust, is about 60 percent complete. His involvement with PLAN will help complete it.

“You've got to sit down and ask some very pointed, tough questions of yourself, and try to get things settled before it becomes a crisis, because decisions are a lot easier to make when you're not in a crisis situation,” Mr. Neidhard explains.

“It's a struggle to realize that you're talking about your own mortality,” he says. “Who wants to talk about what happens when they're dead? People just don't want to talk about it, but you have to.”

This is new territory for today's aging parents, many of whom were told 30, 40 and 50 years ago not to worry about long-term issues because they would most certainly outlive their children and their children's disabilities.

But that's not the case in the 1990s. Medical advances have improved the health of people disabled by mental illness, mental retardation, developmental delays, brain injury and severe behavioral problems. Higher expectations and special education have given them access to schooling, jobs, training and outreach programs.

New way of thinking
“When these children were born, the life expectancy for someone with Down syndrome, for example, was maybe 30. That's what the textbooks said, and that's what parents were told,” Ms. Morris says.

“Now things have changed, and where parents thought their child would never outlive them, they are starting to do it,” she says. “It's a whole new way of thinking for parents, and it can be pretty scary.”

Mothers often bear much of the burden, because many of them agreed years ago to be the child's primary caretaker, a job that can now stretch 30-50 years or more.

“A lot of our consumers (people with disabilities) are not verbal,” says Ms. Morris, who works with families to arrange for long-term care plans. “They can't speak up for themselves. The moms are the ones who understand the little things about the person — the little grunt or the half smile and what that means. To think that some else is going to be caring for their child and who may not know those things is a pretty scary thing.”

The issues are similar but different among families where diagnoses like schizophrenia, personality disorders, cerebral palsy and quadriplegia present difficult but individual challenges. The abilities of disabled adults vary greatly, too, from those who need round-the-clock care to those who are fairly independent.

That's certainly true for Mrs. Hamilton, who hopes Pamela can be cared for in a style and location to which she's lived all her life — at home, able to attend a supervised job center in Middletown and able to socialize with friends.

“It's always on my mind,” says Mrs. Hamilton, whose husband died in 1995, leaving her as the sole caregiver for her adult daughter. “Some people have family to help out, but I have no one. My husband had no one. It is very difficult, but I have to do the best I can for her.”

Richard Buck, member of the Hamilton County Alliance for the Mentally Ill, says a coalition of parents first met in 1995 to discuss a PLAN-like organization. Five similar PLAN groups operate in Ohio; 22 exist nationwide.

The goal, Mr. Buck says, is to establish a framework under which parents can arrange for existing personal care services and set up special-needs trusts or estates that will provide financial aid for their adult child without jeopardizing their income from Medicaid, Medicare or supplemental Social Security programs.

“Everything we do can be found somewhere,” he says, “but there just isn't enough time, or people don't have enough energy, to search through the system to find the pieces that have to be put together.”

PLAN's goal is not to create new services, he says, but to offer referrals to families about legal issues, guardianship and community services so that sound financial planning can help pay for those services when the parents die or become disabled themselves.

“The intent is to develop the plan in advance while everyone is able and healthy,” Mr. Buck says. “It may just sit on a shelf, waiting for the parents to be incapacitated, but once that happens, the plan is there.”

Families need to ask numerous questions: What kind of care do they expect? What is the disabled adult used to? Can a similar situation be arranged when the parents die? What can the family afford? Can other family members and friends help? If so, how much?

Previously, he says, family members played a large role in caring for a disabled child, with long-term care institutions, nursing homes and even mental hospitals filling in when family members couldn't or didn't.

But many of those options are no longer available or are too expensive for families. Group homes and community services have replaced institutions. Often, families face crises that force them to make quick decisions, good or bad.

Dropped off at the office
Pam Long, communications director for the Butler County MRDD board, remembers instances in years past when mentally retarded adults would be left at the board's case management offices.

“People would be dropped off on a Friday afternoon because their Mom or Dad had died during the week or the caregiver had been put in a nursing home, and the family didn't have any plans,” she says.

“It's ultimately going to become a question for the community — how are we going to support families who have done everything they possibly can to care for their adult disabled children?” Ms. Long asks.

For the time being, the Neidhard family is happy. In 1998, Tom Neidhard moved into a two-bedroom supported-living home in Mount Washington with another resident, and supervision is provided by an agency that contracts with Hamilton County for in-home services for disabled people.

He works daily at an MRDD adult work center in Madisonville and recently began a part-time weekend job at a restaurant. Father and son talk once or twice a week by phone, and Mr. Neidhard visits at least once weekly.

“Tom loves it,” Mr. Neidhard says. “For years, he'd ask me, "Dad, when am I going to get my own apartment?' We've done that, and he's living what he considers to be in a normal situation.”



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