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.