People First of Oregon
Fairview: The Closing Chapter
Waiting for care -- for years
Oregon is one of the worst states for developmentally disabled adults who need group home care or other services
Betty Osier wrote Gov. John Kitzhaber in a rage.
The Coos Bay woman's 31-year old son, Kenneth -- afflicted with autism, mental retardation and seizures -- had been waiting for a spot in a state group home for more than a decade. Yet another developmentally disabled adult from out of state had won a spot in less than six months.
"I am so mentally and physically weary," wrote Osier, 60, who on some nights got up every 20 minutes to help her son through seizures. "The state of Oregon is biased and unfair against families who have for years quietly borne the burden of caring for their older disabled children in their own homes."
A week after she mailed her letter in early July, the local mental health office called to inform her that Kenneth could move into a group home two hours south of Coos Bay in Brookings.
Osier's victory is rare, but her rage is common in Oregon. Thousands of developmentally disabled adults, many of them living with parents who are aging and in need of care themselves, wait year after year for state services. Those waiting include people who suffer from mental retardation, physical handicaps, communication difficulties and cerebral palsy.
State officials acknowledge Oregon has one of the longest waiting lists in the nation. What's more, they think hundreds, if not thousands, of developmentally disabled Oregonians have given up and aren't even on the list.
Eva and Jack Cogburn of La Grande put their autistic son, Michael, on the state waiting list for group home care when he was in high school.
Today, 16 years later, Michael is 35 and still waiting. His parents have concluded he stands in a line that will never move until they die or become too ill to care for him.
"We judge a society by how it cares for the disabled and the old," Eva Cogburn said. "This wait list is really a blemish on Oregon."
Oregon had one of the worst waiting lists in the nation, according to a study by The Arc, a national group that provides services and support for the mentally retarded. The survey ranked 47 states from worst to best.
Oregon ranked fourth on the list, with unmet service needs of 226 per 100,000 population; Washington ranked 12th, with 128 per 100,000 population; and Idaho fared better at 40th, with 16 unmet service needs per 100,000 population. Several states report no waiting lists.
In Oregon, 3,880 adults wait for state services ranging from in-home respite or nursing care to job training or round-the-clock, group home living. State officials note those numbers include duplicate counts of some people seeking multiple services. What's more, The Arc's ranking is questionable, they say, because it compares states that have different ways of counting people on their lists. And one reason Oregon ranks so poorly may be because it keeps better records than many states, says The Arc.
Still, at least 2,000 developmentally disabled Oregon adults live with their parents and receive no or minimal state services, says James Toews, assistant administrator for the state Office of Developmental Disability Services.
"That, probably, on a per-capita basis, does put us as one of the worst offenders in the country," Toews said. "We are pretty notorious for having lengthy waiting lists."
Time off for a funeral?
Without help from the state, parents have been forced to rely on their own resources, which vary widely. Some can afford to buy private services, but others must make personal sacrifices.
Fourteen years ago, Conway Enscoe, 71, of Coos Bay, took in his foster son, Scott David, who has cerebral palsy and mental retardation. Enscoe, who is single, has been asking state and county officials for the past decade to give him some respite care so he and Scott, now 32, can occasionally get a break from one another. Enscoe has not had a night out alone in 14 years.
He has been denied help so many times that he didn't even bother to ask when his mother died in April. He just skipped her funeral.
Betty Osier figured Kitzhaber must have intervened to get her son into a group home after so many years of inaction. But, in fact, state officials had decided on their own to make room for Kenneth, said Annabelle Jaramillo, the governor's citizens representative.
"The timing was coincidental," she said.
The state has built its long waiting list on its policy priorities and money shortages. The Mental Health and Developmental Disability Services Division this year will spend about $310 million in state and federal money, 85 percent of which will go to providing group home care for 4,365 developmentally disabled adults. The division provides in-home care, job training and work for 7,092 others.
The division has been preoccupied during the last decade with obeying a federal court order to shut down Fairview, a huge institution near Salem that at one time provided expensive, 24-hour care for 3,000 disabled Oregon adults.
"(The order) has given us little opportunity to do anything else," said Barry Kast, head of the Mental Health and Developmental Disability Services Division.
Employees with short tenure
But closing Fairview has freed money to serve disabled adults in their communities. Fairview's population has plummeted to 91, and the institution will close next year, giving the state $110 million to invest elsewhere over the following two years. That should enable Oregon to cut the waiting list by up to two-thirds, mostly by providing job and in-home services.
Those waiting for group home care, however, still must face a serious crisis to gain admission. The state has been reluctant to expand 24-hour care, other than to make room for Fairview residents, because of the 75 percent to 125 percent annual turnover in its group home employees.
An hourly wage boost from $6.50 to $8.20 for group home workers over the last three years has not kept pace with prevailing wages in the booming economy. Consequently, about half the workers in state group homes have been employed less than a year.
"To keep growing a 24-hour care system that we can't stabilize, doesn't make sense," said Toews, the assistant state administrator.
Demand going up
Yet, the large number of aging developmentally disabled adults in the baby boomer generation will produce a growing demand for group home space.
"We have a huge problem looming before us in the next 10 to 15 years as those aging caregivers wear out, die or can no longer cope," Toews said.
About 14 states in recent years have decided to spend money to reduce, or even wipe out, their waiting lists, which include roughly 140,000 people nationwide, said Roger Tuttle of Arlington, Texas, a project specialist for The Arc's national waiting list campaign. Maryland will spend $36.4 million this year, just as it did last year, to reduce its waiting list, which it plans to eliminate in 2001.
The Oregon Legislature this year rejected a proposal to spend $10 million on reducing the waiting list. But it did pass Senate Bill 919, which requires the state by early next year to determine the scope of service needs for the state's developmentally disabled and a plan and price tag for meeting those needs.
Meanwhile, parents like the Cogburns wait and worry about what might become of their children.
"Oregonians are not taking very good care of their disabled," Eva Cogburn said. "It is just kind of a sad situation."
This article by Bill Graves was published by the Oregonian, August 15, 1999