Some of Oklahoma's most fragile mentally disabled people could die as Oklahoma moves toward closing state centers for the mentally disabled, warned an attorney who helped dismantle the state's first institution.
Louis Bullock spoke at a December meeting in which Oklahoma Department of Human Services commissioners reviewed DHS plans to reduce the two state-run centers' resident population from 242 to 112. Bullock and his wife, Patricia, are Tulsa attorneys who handled the landmark class action lawsuit that shut down Hissom Memorial Center in Sand Springs in 1994.
Bullock worked with DHS on the Hissom plan that placed about 450 severely mentally disabled residents in community homes. But he said DHS planning is different this time.
“The plan that DHS originally presented, we are convinced is not well thought-out. And it lacks the essential safeguards that are necessary to be sure that the move is safe and successful,” Bullock said.
“Transfer trauma” is a risk in moving people out of state institutions, he said. Huge life changes can cause depression and lowered resistance to disease for anyone, but even more so with disabled people who often can't communicate, he said in an interview.
“The Hissom experience worked very well,” Bullock said.
“We didn't have any instances of transfer trauma and you don't have it if you do this right. But if you don't, people can die,” he said.
DHS Commissioner Wes Lane said it does appear Oklahoma is moving toward eventually closing the Southern Oklahoma Resource Center in Pauls Valley and the Northern Oklahoma Resource Center of Enid. DHS director Howard Hendrick said it's impossible to know what will happen after most residents are moved to community settings by Aug. 13, 2013.
By then, DHS will be required to make repairs such as installing sprinklers and other improvements to continue receiving Medicaid funding. The department doesn't have the estimated $34 million to fix sewer lines and make big improvements to aging buildings.
Lane said commissioners want to know how the most medically fragile, long-term residents will fare in the community once they are deinstitutionalized. That's something he said wasn't clearly addressed during the December meeting.
“Clearly the majority of the commission members were uncomfortable about the discomfort expressed by some family members. We ordered DHS to go back and talk to Mr. Bullock and others about those concerns to see how we could make sure those were addressed. I, as of yet have not been reported to, concerning that,” Lane said.
Bullock said an independent DHS advocate general who reports to the DHS commission, not to the director or others, should determine each person's needs, one-on-one, and design the program around that person. Then they need to move people out one at a time, rather than in small groups.
“Those (small group) types of moves are fraught with peril,” he said.
“It's a very serious task to take on. You can't do this in a sloppy or ‘this is good enough for government work' type of way,” Bullock said.
Worried kin offer solution
“DHS is faced with budget shortfalls. It's easy for them not to do anything and just close the centers,” said Ken Talley, president of the Parent Guardian Association for Southern Oklahoma Resource Center.
“We feel those clients would be at risk,” he said.
The association has developed a proposal to use royalty money from the oil property on SORC to fund sprinkling systems so remaining usable buildings could pass code and continue to qualify for Medicaid funding for residents' care and treatment.
The association plan also includes selling many of the more than 800 acres that make up the campus in Pauls Valley. Those revenues, combined with a $20 million general obligation or revenue bonds would be used to build a total of 10 eight-bed residential buildings at a cost of about $800,000 each. A 20-bed acute care hospital on both campuses would cost about $4.4 million.
The total cost is estimated at $28.8 million, compared with the $32 million DHS plan that is not expected to be funded.
Talley said the center then would accommodate easily the 120 people now living at SORC, as well as people in emergency situations.
“If enacted, it would be a bold step into the past,” Bullock said of the association's plan.
The association's letter to commissioners states that just nine states have closed their institutions.
“I'm not aware of any state which is building new institutions, which is what this plan would amount to,” Bullock said.
Talley said those in the association think that the community setting is fine for some people but not for others, particularly those now living in the centers.
Frank Appl said his daughter couldn't live outside SORC because her disabilities are so severe that she has had as many as 100 seizures in one night and lingered near death. With three caretakers watching his daughter and 10 other girls living together at SORC, he said there's always someone to handle medical emergencies and get the resident to the on-campus hospital without leaving the other residents unattended.
Mary Ann Paulsen said when her son was in community care, he was overmedicated and suffered three days with a ruptured appendix before community caretakers took him to the doctor. Unable to find another community care that would accept him because a stroke worsened his disabilities, he was finally accepted at SORC after she begged DHS, Paulsen said. She said DHS' contention that no one wants their loved ones admitted to SORC or NORCE is wrong.
Ryan Whitlow said the state facilities are not offered as options to people searching for care for their disabled loved ones. He said his 25-year-old daughter has been at SORC seven years and likely could not be handled elsewhere. He said she was one of six severely disabled girls who aged out together from The Children's Center in Bethany at age 18. The others went to community care and have all died, he said.
Talley said, like his own severely mentally disabled brother, many residents are in their 40s, 50s or 60s and likely couldn't survive without the consistency of health care offered at the centers. Guardians have spent sleepless nights and cried countless tears over what will happen to disabled loved ones left behind when they die, he said.
The association's plan outlines research showing that more than 20 percent of former residents died after being forced from their large center for the disabled in Nebraska.
The DHS plan states that statistics show no greater likelihood of a person dying in community-based services than in facility-based services.
Trish Frazier has watched parents and guardians age and become more concerned about what may happen to their loved ones living at the state centers.
“Now the brothers and sisters are taking the helm. For some, going to the community homes is acceptable. That's great, but what about when they say, ‘I don't want to leave my child or loved one and not know what their future is going to be when I die?' ” said Frazier, Oklahoma Public Employees Association policy director. She's also concerned about uprooting the centers' 600-plus employees under the DHS plan, though there is an incentive plan that includes options such as a $5,000 payment for former employees who go to work for a community provider and stay for at least six months.
The average length of stay by residents of the two centers is 32 years, with many falling within 20 to 50 years of residency, according to Talley's parent guardian association.
What really concerns people is change, said DHS Developmental Disabilities Services Division spokeswoman Ann Dee Lee.
“It's just plain scary and I don't blame them,” she said.
She said that the agency is taking it slowly and carefully. Families of residents who have been there the longest get first priority on whether they move from SORC to the Enid center or to the community setting.
“It's not government first. It's not buildings first. We're looking at people first,” Lee said.
Residents switch centers
If the DHS plan is approved, Sally Randall, NORCE director, said the Enid center is prepared to take an expected 20 to 25 people from the Pauls Valley facility. NORCE transitions people into the community when parents or guardians approve, she said. The center has 115 residents now, though some of those will go to the community, while the center accepts the 20 or so from Pauls Valley.
“When the plan is all said and done we should have around 100 individuals,” Randall said.
At NORCE, Martin Whipple fought becoming emotional when he talked about the people in “Cherokee,” the residential area he manages. As he spoke, he stood near one of his favorite residents, Darrell, who smiled broadly as Whipple talked about taking Darrell to a recent college basketball game.
“Do I think everybody here needs to stay at NORCE? No. Are there people that need to live here? Absolutely,” he said.
Bullock said he heard and believed the same concerns for Hissom residents that SORC residents' families have expressed about moving residents into community settings.
“We challenged DHS early in the litigation to name the people that they believe most clearly represented the people they had to keep Hissom open for. As soon as the judge ordered Hissom closed, those were the first people DHS moved out of the institution,” Bullock said.
Bullock said moving the mentally disabled to the community should be done in a thoughtful, careful manner over one to 1½ years. He said there's great risk if the state fails to follow the lessons learned in closing Hissom.
James Nicholson, director of DHS' Developmental Disabilities Services Division, said safeguards involve inclusion of families in decision-making, case managers assigned to each person and advocacy services.
“My prediction is if the commission will adopt the model that the department used in closing Hissom, this will work terrifically. The state will save millions and the people moved out of there will absolutely cherish their new lives and their families will be very happy that this happened,” Bullock said.
DHS recently posted a revised plan online recommending that, beginning March 1, eight to 10 people monthly should be moved from the centers into the community until 130 people are placed by Aug. 13, 2013. The plan is expected to be considered Tuesday at the DHS commission meeting. The parent guardian association also hopes commissioners will consider their plan released Friday.