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Malena Talley has a large photograph of herself and her four children, taken in 1988, three years after the family moved from Chicago to Minneapolis. The four children surround their proud, smiling mother. The youngest of Mrs. Talley's three boys, Dion, was sixteen at the time, but looks younger. He wears a wide-open grin, his hand on his mother's shoulder. Dion was declared mentally retarded at birth; he has the IQ of a 2-year-old. Dion's school records support Malena Talley's recollection that Dion was a healthy, happy child who spoke in short sentences.
Malena Talley: "He was a playful person, he liked to play. He was able to talk to you and let you know what he wanted, what he didn't want. He could take a shower and brush his teeth, tie up his shoes. He could write his name and he could count to at least ten."Mrs. Talley worries it's a different Dion who will move in with her in a few days, after six years in state institutions. Mrs. Talley moved from Chicago to Minneapolis back in 1985 partly, she says, to escape the violence of Chicago's Cabrini Green public housing project, and partly because she'd heard Minnesota had good programs for mentally retarded children.
Malena: "I thought I came up here to give my children a better life. But now, seem like I shoulda stayed there. I'd rather dodge bullets than see what's happened to my son."Dion Talley is now 24. He's spent most of the last five years at the Cambridge Regional Human Services Center, an hour north of the Twin Cities. On a recent morning, he sat in a chair against a wall in a bright break-room at the facility, moaning incomprehensibly and snapping his jaws; staff and other residents chatted nearby.
Sound: Dion moaning, talking gibberish.
Malena: "Dion, how you doing? Dion..."Staff at the treatment center get visibly nervous at the sight of Malena Talley and the two reporters she's brought along. Mrs. Talley has had an antagonistic relationship with Cambridge staff, as with many other state and county officials, for as long as her son has been in their care. Mrs. Talley is angry about Dion's treatment in state institutions, and she's angry that Dion ever entered state care. On this day, she demands to know how long her son has been "like this," as she puts it. A young staff member agrees with Mrs. Talley that in the past year Dion has lost his ability to recognize people and to talk.
He moans softly.
Malena: "How long he been like this, 'cause he usually know who I am."Mrs. Talley finally challenges Michael Maus, the Cambridge facility's Chief Operating Officer. With reporters present, Maus declines to discuss Dion's condition.
Staff person: "I know what you're talking about, because probably about like last winter, last spring, '95, he knew who you were, you could have a conversation with him. I would say probably since last summer he's probably been like this."
Sound: Dion, calmer vocalizing, clopping teeth.
Malena, emotional: "Why is he slow down?"Dion Talley suffers from two conditions now that he didn't have during 18 years in his mother's care. His doctors now consider him mentally ill; and he has a condition called tardive dyskinesia - an inability to control the movements of his face and limbs. Tardive dyskinesia is caused by prolonged use of neuroleptic drugs - a type used for mental illness or psychotic behavior.
Maus: "I cannot comment on individual client cases."
Malena, voice breaking: "I'm ready to go."
State and county officials declined to talk about the Talley case, citing legal complaints filed by Mrs. Talley. Dion's care was under state control for several years in the early 1990s. When Malena Talley regained control two years ago, she ordered a stop to the neuroleptic drugs that gave Dion tardive dyskinesia. University of Minnesota Psychiatrist Ronald Hardrict joined Dion's medical team as a consultant in 1994. He says the condition is usually permanent.
Hardrict: "A number of treatments have been tried to diminish the symptoms, but there's clearly no consistent treatment for this condition beyond early management, early recognition, and discontinuing the neuroleptic."At the request of Cambridge officials, Dr. Hardrict declined to talk about Dion Talley's case. But in a letter last year, Hardrict argued doctors had used anti-psychotic drugs for several years with few signs they were doing any good. He says in the past, anti-psychotics were commonly used as tranquilizers, but the current practice is to use other approaches unless a specific mental illness warrants the use of anti-psychotics. In a 1993 report, a Cambridge pharmacist wrote Dion had been drugged for "chemical restraint," and that "little if any effective behavior management programs were used."
Michael Maus, the COO of the Cambridge treatment center and a licensed psychologist, wouldn't comment on Dion's case, but said state regulations prohibit over-medication. And Maus says heavy use of drugs would work against the center's goal of helping residents learn job skills.
Maus: "When we start talking about work, and we start talking about doing things, people who are over-medicated don't do that very well, so it detracts from our ability to work with people and to get them to change."Since he's been in state care, Dion Talley has clearly been a difficult, often violent patient, and doctors say some patients are so sick and hard to control that there's no alternative to using drugs that may do permanent damage. But Malena Talley says if her son were so out of control that he needed anti-psychotic drugs, then institutions made him that way. By all accounts, Dion showed no aggression until he was in state care. That doesn't prove state doctors made Dion sicker. A national expert on mental retardation and mental illness told MPR the natural onset of mental illness often happens as the patient reaches adulthood. In any case, Malena Talley's anger and suspicion is fueled by the fact that she never agreed to the use of drugs, and never wanted Dion institutionalized in the first place.
Malena: "I never knew there was a Cambridge, knew nothing about a Cambridge 'til they sent him there. And I never intended for my sons to go anywhere."Malena Talley herself is disabled with severe asthma and emphysema; she lives on Social Security. She recently bought a small house in a poor south Minneapolis neighborhood.
Sound: Malena walking upstairs.
"This is a bedroom here. (opens door.) And bathroom Look kinda nice, don't it? (laughs)"In addition to 24-year-old Dion, another of Talley's four children, 25-year-old James, also has mild mental retardation. James has a room upstairs in his mother's house. He's a tall young man with a mischievous smile. Malena and James recall happier times, when Dion was home.
Malena: "He didn't know the value of money, but he always wanted five dollars. (laughs). His favorite words was 'five dollars,' wasn't it James?"Talley says she always intended to care for both of her disabled sons in her own home. But by the time the family moved to Minneapolis, James and Dion were growing teenagers and they began wandering into the city without her. Malena's asthma had gotten worse. She couldn't keep up with them, and they started getting into trouble.
Malena: "What was it?"
James: "His favorite words was 'ten dollars.'"
Malena: "'Ten dollars!'" (laughs).
Malena: "They played with little kids, and their parents didn't want them playing with their little kids because they were so much bigger. But the bigger kids didn't accept them because they was retarded and they would jump on them and fight 'em, and they just wasn't fitting."Talley says her sons also had run-ins with police, who approached them on the streets and didn't understand they were disabled when the boys didn't respond normally or ran away.
In the late '80s, Malena repeatedly asked Hennepin County case manager Kevin McLane for help with her sons. She says McLane told her if she wanted more services she'd have to place James and Dion in institutions. Mrs. Talley now says McLane failed to steer her to available options - such as the Personal Care Attendant program, which provides help for disabled people in their homes. State officials say if the program was a fit for the Talley family, a given case manager might not have known that. Kevin McLane was replaced as Dion Talley's case manager a couple of years ago. He refused to comment on the case, on the advice of Hennepin County attorneys.
In 1990, Malena Talley reluctantly placed her sons in separate state-funded institutions for the mentally retarded - both of them near her home in Minneapolis. Things went reasonably well for James; Dion, the more severely retarded younger brother, started a downward spiral. Records show Dion had trouble expending his considerable energy in a confined place. Horseplay escalated into aggression. He repeatedly ran from the institution, usually turning up at his mother's house. Malena Talley says Dion did not respond well to the institution's restraint methods, because he'd been raised in dangerous urban neighborhoods and Malena had taught him to fight back when attacked.
Malena: "When I would take Dion back he would run from them, and they pinned him down and hold him down and beat him in his back, and he would try to respond to them and they call the police and the police manhandled him again. So I asked them could he come home, and they told me now I wasn't capable of keeping him, he was a threat to me and the community."Doctors soon turned to medication as a way of calming Dion. His behavior turned more violent; he started kicking, biting, and throwing chairs at staff. In early 1990, a doctor had described Dion as a healthy 18-year-old in no distress. After a year in institutions and several violent outbursts, he was diagnosed with "intermittent explosive disorder" and "possibly major" depression. Ella Gross was an advocate with the non-profit ARC of Hennepin County. She first met a heavily-medicated Dion in a hospital psych ward.
Gross: "He was incoherent, he was slurring, very glassy-eyed; it was almost a breaking of his spirit. When I met him, his spirit was broken."The handling of Dion Talley seems oddly out of place at a time when state policy is to keep families together whenever possible, to move the disabled out of state hospitals, and to minimize the use of anti-psychotic drugs.
In the spring of 1991 Dion was committed to the state regional treatment center in Cambridge. Malena Talley opposed the commitment, but by this time she had no say in the matter. Dion had turned 18 and the state had taken control of his affairs. Hennepin County case manager Kevin McLane sought and received conservatorship powers over Dion.
Public conservatorships are rare in recent times; they're usually only allowed when no close relatives are willing or able to take on the role. Malena Talley says that wasn't so in the case of her and Dion.
Malena: "OK, I had him, I'm the mother, and I took care of him from birth until that time. I wasn't offered the guardianship, and I was asking for the guardianship."The state's 1990 petition for public conservatorship admitted Dion Talley's mother had "indicated that she would like to become his conservator," but said Mrs. Talley had "initiated no action to accomplish this on her behalf." Malena Talley says she tried to claim guardianship, but did not understand the need for a lawyer and an official petition. She says she attended the conservatorship hearing after getting a notice about it, and was surprised to find the court designating Kevin McLane her son's conservator. DFL State Senator Linda Berglin of Minneapolis looked into Dion's case at Malena Talley's request.
Berglin: "The county should not have removed that child from the home without offering them services, and they should have made every effort to reunite the child with the parents, and they should have offered services to that child to stay out of an institutional setting. These are all things that are required in statute, in different parts of the statute."Berglin says she has no evidence that race was a factor in the Talley case, but Berglin asked the Department of Human Services to examine whether minorities with developmental disabilities are treated differently in the Minnesota system. Studies elsewhere around the country have found minorities are treated differently - they're more likely to be diagnosed with schizophrenia; they're given higher dosages of anti-psychotic drugs, and they're more likely to be institutionalized. A study last year found young African-American men were the only demographic group whose numbers were not declining in state hospitals across the country. Malena Talley believes Hennepin County case manager discriminated against her and her son. And she says McLane's successor, county case manager Clarence Bischoff, acknowledged as much in a conversation with her.
Malena: "Clarence told me that they recognized that Kevin McLane was prejudiced on the issues, that's how my life got so corrupted."Clarence Bischoff declined to comment. The head of the Hennepin County Developmental Disabilities Division, Mary Barstad, also refused to discuss the Talley case, but read a prepared statement.
Barstad: "It is the policy and practice of Hennepin County not to discriminate against the persons it serves. The division believes any inquiry concerning the case in question will arrive at this conclusion."Researchers who've looked at the disparities in treatment of minorities with developmental disabilities say willful discrimination may not be the best explanation. One study in California found doctors perceived black patients as being more violent than whites who showed similar behavior. Dion Talley was committed on the grounds that he was dangerous, but after his mother's relentless efforts to bring him home, doctors acknowledge he can live in the community with the proper support system. He's never seriously hurt anyone. Malena Talley's attorney, Sonja Kerr, says professionals in the overwhelmingly white social service system look at Dion - a young black man about six feet tall and 170 pounds - and they see a threat.
Kerr: "This one meeting we had, this was just recently, the last time we were there. And the comment from the county people was, 'Dion is a big black boy.' I say, 'excuse me, you mean he's tall.' And they said, 'he's big.' And the implication there is this racial undertone of, you know, big black boy, you better not let him out."Malena Talley says race has also played a role in her relationship with social service workers. Talley thinks officials marked her as unfit for county programs because she's a black, single mother who moved to Minneapolis from Chicago.
State and county officials never made a case that Mrs. Talley was unfit to care for Dion. But there are signs that some in the system saw her that way. Back in 1990, when Dion was wandering away from his mother's home, a doctor concluded the young man was being "neglected [by] his family" and "leading an unstructured life on the streets of Minneapolis." At the time, Malena Talley was telling Hennepin County workers she was too sick to manage her sons. Former ARC Hennepin advocate Ella Gross sat in on meetings where Dion Talley's care was discussed. She says Mrs. Talley was often surrounded by 20 or 25 professionals, most of them white, and was routinely ignored. Gross says that fed Mrs. Talley's mistrust of the system, which then further worked against her.
Gross: "She was perceived as a hysterical person, because she couldn't contain herself in meetings and she'd break down and cry, and she'd accuse people of being racist right in a meeting, and for Minnesota Nice individuals it just wasn't something that they could get used to. And whether there was racism or wasn't racism, there clearly were some injustices done to her."Malena Talley is scheduled to take Dion home from Cambridge in a couple of weeks. Mrs. Talley regained conservatorship of Dion in 1994, only to find the state had gotten a civil commitment order to keep him at Cambridge. Since then, it's taken her two more years to get Dion's release and services arranged in her home. Dion's home-care services will cost taxpayers less than the $350/day price tag at Cambridge.
Sound: Malena taking pictures: "Hey Dion, taking your picture. Smile Dion. Dion! Smile for mama, smile! Heeey. What's up?"
Talk to any observer of government programs for the mentally retarded, and they'll tell you most people working in the system perform a difficult job with competence and compassion. State officials express pride that the bad old days are mostly gone, when thousands of mentally retarded people were warehoused and drugged against their will. But few will claim those days are gone entirely. Advocates for the retarded say state programs are complicated, bureaucratic, and underfunded. Roosevelt Perkins has worked with disabled people for almost thirty years in several states. He's now the only black staff member in the Office of the Ombudsman for Mental Health and Mental Retardation. Perkins says families like the Talley's are at great risk of being badly served by the system.
Perkins: "Even whites with mental health issues and in some areas of mental retardation too, they're 'falling through the cracks'. And if white middle-class people with mental health issues and mental retardation are falling through the cracks, historically, where will a minority fall? He won't even reach the crack, will he?"Malena Talley hopes to help other minority families see that they don't fall through the cracks. She recently got licensed to be an advocate for developmentally disabled people.