Amber Reynolds often gets a “new-to-her” lunch bag when she goes on shopping trips in Denton with her mother.
At Twice as Nice resale shop on Bell Avenue, Amber rifles through several lunch bags and settles on one decorated with rainbow-colored skulls. As other items in the store get her attention — a bin of body butter, a little bag of play money — she tucks them inside the lunch bag for safekeeping.
Her mother, Angela Biggs, knows her 26-year-old daughter well. Amber was born with a brain injury that profoundly affected how she grew and developed. Over the years, doctors diagnosed, misdiagnosed and re-diagnosed Amber before settling on severe mental retardation and severe bipolar disorder with psychosis.
Their lives are anything but settled, however. Biggs has battled the state over Amber's care at the Denton State Supported Living Center for more than a year. She wants to extract her daughter from the state school and find a group home in a neighborhood setting where Amber can live with other developmentally disabled people.
Her long-running battle with the state of Texas is playing out in Denton County Probate Court, and Biggs worries she is losing. Her case opens a window into the complicated relationship between the 447 people who live at the state school on State School Road in far south Denton and their families.
“It’s like living on an island, no matter which way you turn for help,” Biggs says.
When the two women step up to the checkout counter, Biggs reminds Amber that the clerk needs to scan the items zipped up in the bag.
Biggs shares a laugh with the clerk about the little bag of play money tucked inside the lunch bag.
“We need to pay for this [play] money,” Biggs says. The joke is lost on Amber.
Amber is a happy and curious young woman. She can put together five or six words when she’s motivated to communicate. Most of the time, she speaks in simple two- and three-word declarative sentences and questions.
“C’mere,” she says, holding a stranger’s arm to invite her to browse the resale shop, thumbing through wallets and picking up housewares.
Her mother helps her try on a big purple hat.
“How about this?” Biggs asks. “Purple hat lady.”
Amber tilts her head as if posing for the camera and grins a toothy smile, her eyes sparkling.
Occasionally, Amber can be aggressive. Biggs could manage her daughter’s outbursts when she was little. But as she grew, the aggression became harder to manage. At about age 10, Amber was big enough to really hurt her older sister, Jennifer, and younger brother, Taylor, when she lashed out. She scared Jennifer and Taylor.
Biggs knew Amber needed help. Biggs and her now ex-husband, Tony Reynolds, agreed to share custody with the state to get funding for Amber's care.
When the state has custody, professional caregivers make hundreds of daily decisions, big and small, that affect the person’s health and development. Parents and family members can visit, of course, and they also may retain some legal responsibility as a guardian.
A guardian is legally responsible for a person who is unable to manage his or her own affairs. For some people with a severe intellectual disability, the guardian may also guide medical and psychiatric care, not just the ward’s financial affairs.
Biggs has learned how fine a line guardians must walk. When Amber was still a teenager, she was mistreated at a large group home. So, Biggs and Amber's father fought successfully to regain custody. She lived with her father for a while and bounced through several other living arrangements for a decade. Then, in June 2013, Amber suffered a psychiatric breakdown and was admitted to Terrell State Hospital, which treats mental illness.
The hospital changed Amber's medication and gave her an antidepressant that triggered a manic episode, according to records Biggs obtained and shared with the Denton Record-Chronicle.
Christine Mann, a spokeswoman for the Texas Health and Human Services Commission, which operates the Terrell hospital and the state living centers, declined to comment on Amber's case, citing privacy laws.
Biggs questioned her daughter's treatment in Terrell, a small town in Kaufman County about 30 miles east of Dallas. Four months after the manic episode, the hospital deemed Amber stable enough to be discharged after putting her on a five-drug cocktail to manage her anxiety and manic episodes. But Amber was back in the hospital within a month and eventually was readmitted to Terrell.
Biggs continued to question her treatment. In February 2014, the state found a spot for Amber at the Denton State Supported Living Center.
Biggs advocated for her daughter during the crisis and lost trust in her caregivers at the Terrell hospital. The caregivers, in turn, said she undermined their decisions. By the time Amber arrived in Denton, a Collin County judge had blocked Biggs from making any more decisions about her daughter’s psychiatric care.
"It's like having one arm tied behind your back," Biggs says.
Despite the judge's decision, she remained Amber's guardian.
Beth Mitchell, an attorney with Disability Rights of Texas, which represents people like Amber, declined to comment on the case. But she said the purpose of guardianship is to be actively involved in the disabled person's life and not rubber-stamp the actions of state caregivers.
Some guardians are like Biggs. They know their wards, visit them regularly and participate in planning meetings. Many others, however, do not, Mitchell said.
"Maybe a few are actively involved and will challenge the recommendations," Mitchell said. "With the others who just go along with the staff, what's the point of being a guardian?"
Biggs communicates regularly with Amber's caregivers at the state living center in Denton. Over the past few years, the Denton staff has been tapering Amber off the drug regimen prescribed at the Terrell hospital. The Denton staff has had some success helping her with daily routines that keep her calm, allowing reductions in medications.
However, the psychiatrist overseeing her case also wrote that Amber likely needs powerful, psychotropic medicines to remain stable.
The medicines have had side effects. An endocrinologist and a cardiologist are monitoring Amber's health, Biggs said. She wants to trust the care her daughter is receiving, but she finds that hard with all that has gone wrong over the years.
“I put my trust in people and then step back,” Biggs says. “But I do have a responsibility, too.”
“I know I don’t have all the answers,” she adds.
It’s been nearly 10 years since federal investigators descended on the 13 state supported living centers in Texas that still serve as home for Amber and 3,000 other Texans with developmental disabilities.
In 2008, federal investigators found some residents were exploited, neglected or abused. News reports revealed a “fight club” at the Corpus Christi living center. Caregivers had pushed residents into fighting with each other and took videos for their amusement. The U.S. Department of Justice sued the state under civil rights statutes.
Texas agreed to a settlement that allows federal monitors to inspect all 13 centers every six months. The centers were supposed to meet much higher standards of care by 2014. They didn’t. However, the centers did make enough progress that a federal judge decided to continue the monitoring rather than take punitive steps against the state.
The latest monitoring report from Denton last September showed the center finally meeting many of the new standards of care. Some work remains in improving care for the residents who need the most support to stay well. As a result, the federal monitors now focus on specific cases, such as Amber’s, although their reports don’t identify the residents by name.
The progress also came at a high cost. The Sunset Advisory Commission, a special state agency that reviews state programs, recommended three years ago that the state close six of the centers to contain the rising costs.
The Texas Legislature has met twice since then, but got nowhere with a plan to appoint a commission to study the problem.
Biggs is not a fan of institutionalized care for Amber. But many families who depend on the living centers to care for a loved one don't want them to close. Neither do the thousands of state employees who work there. With about 1,600 people caring for the 447 residents in Denton, the Denton State Supported Living Center remains one of the city’s largest employers.
But the sunset commission also determined the rising costs were unsustainable for the state budget, a problem encountered at large institutions around the country. A recent nationwide study found the cost of institutional care for the disabled rose 60 percent from 1990 to 2009, after adjusting for inflation.
Since the Department of Justice began monitoring the Texas centers, state officials have gotten better about helping residents move out, Mitchell said. Since 2010, more than 1,600 people have moved out, including 108 from Denton.
Yet some people, like Amber, have also moved in over the years. In 2010, 4,207 Texans lived in state institutions. As of the end of July, 3,014 remained housed in 13 centers statewide. Texas is among the last states that still house a significant population of people with disabilities in large institutions.
Preparing to move
Biggs drives the 135 miles from her home in Waco to visit her daughter in Denton as often as she can. The pair enjoy their mother-daughter days shopping at resale shops and discount stores, going to the park, visiting friends and having lunch at a restaurant.
A year ago, Biggs asked the Denton center staff to work with Amber so she could move out of the institution. Amber had lived in a group home in the community during her teen years. With the right support, Biggs felt her daughter could do it again.
But the Denton staff disagreed that Amber could thrive outside the institution, court records show.
Christine Mann, the Texas Health and Human Services Commission spokeswoman, said the state has no data on residents who have asked to move out of a living center and who have been denied. The state is handling 194 cases of residents who want to move out of a living center, including 24 from Denton, Mann said.
She declined to comment specifically on Amber's case, citing privacy laws. However, there are many reasons some residents don't move out of a living center, she said.
Sometimes the resident is reluctant. Other times, the guardian is reluctant. The staff may recommend against a move when the resident needs around-the-clock care, including "behavioral health or psychiatric needs requiring frequent monitoring ... or enhanced levels of supervision," Mann wrote in an email to the Record-Chronicle.
Biggs also went to the Denton probate court for help in reinstating her full guardianship. In January, Denton Assistant Probate Judge David Jahn called the state's restriction on Biggs’ ability to independently guide her daughter’s psychiatric care a "gross deviation." But he did not remove that restriction.
Instead, he appointed a guardian ad litem — an independent attorney ostensibly representing Amber — to review her case. The attorney sided with the Denton center staff, recommending that Amber remain at the center.
In May, Jahn acknowledged that federal law protects Amber's civil rights to live where she is cared for and where she is confined in what the law calls "the least restrictive environment." He ordered a comprehensive care plan be made for her. He also ordered Biggs to complete half-day training on guardianship.
Another court hearing is tentatively planned for September, ostensibly to restore Biggs' guardianship and determine the least restrictive place Amber may live.
Biggs said her expectations are realistic — and low.
“I’ve been at this for 20 years,” Biggs says. “I just want to enjoy what’s left of Amber.”
“The system is broken,” she adds.
Moment by moment
The pair went shopping at Wal-Mart this week — a break from life on the living center campus.
Amber knows her mother needs more lipstick. Biggs isn't surprised when Amber sets out to help her find it. But she is surprised that Amber picks out the shade she prefers.
“It’s the perfect color,” Biggs says.
As the day ends, Biggs texts the center staff to let them know Amber is returning to the campus. She buys her a fruit smoothie and turns off the music on the drive back. It's time for Amber to transition from mother-daughter day to life back at the center.
At one point, Amber sits straight up in the car and reaches forward to gently touch her mother’s arm and kiss it.
“Mommy, thank you," she says.
Biggs soaks up the unsolicited gratitude.
“That’s what I take in and cherish more than anything,” Biggs says.
Staff photographer Jeff Woo contributed to this report.
PEGGY HEINKEL-WOLFE can be reached at 940-566-6881.
FEATURED PHOTO: Amber Reynolds waits to visit with military veterans so she can give them cupcakes as a way to say thank you for their service ahead of Memorial Day weekend at the Denton Good Samaritan Society. (Jeff Woo/DRC)