Evicted and Helpless

Disabled residents to be forced out of state supported living center

Carol Cook (l) and Rosemary Lester, family members of SSLC residents, embrace each other for support.
Carol Cook (l) and Rosemary Lester, family members of SSLC residents, embrace each other for support. (Photo by Jana Birchum)

As a single mother, Carol Cook shoulders the weight of parenthood alone. When her son Jason developed behavioral disorders and uncontrollable seizures as a result of oxygen deprivation during infancy, she knew the road ahead would be doubly difficult. The complications amplified in 2001, when Jason was evicted from a group home due to his erratic and unmanageable behavior. Cook was left nearly hopeless about her disabled son's future. That is, until she found refuge for Jason at the Austin State Supported Living Center (formerly the Austin State School) at West 35th and MoPac, where he's received immediate and centralized medical attention in a stable environment.

But 13 years later, Cook is feeling hopeless once again.

In June, she and loved ones of other residents received a letter from the Austin center notifying them that Jason, and about 70 other people with intellectual and developmental disabilities, would be forced out as early as September. Either relocate to an SSLC in a different city – and away from their support networks – the Department of Aging and Disability Services (DADS) told the caretakers, or rely on community services alone. The swift implementation of the eviction has left families in shock and disbelief. They say they've been given no safe option, and feel steamrolled and rendered powerless by the process.

"We were blindsided by the decision," said Cook, who, like several of the other guardians, fears for her son's well-being if placed again in a group home. "We feel like they've shut the door on us."

Cottage Closure

The impending partial closure is a preview of what is expected to come within the next four years. The Sunset Advisory Com­mission, the state agency tasked with identifying governmental inefficiencies, voted on Aug. 13 to close the Austin SSLC and assign a committee to determine which five of 12 other state supported living centers to shut down. The closures – largely for cost-saving reasons – would mark the first since 1995, and would affect nearly 300 intellectually and developmentally challenged Austin residents and potentially up to 1,000 residents statewide.

But while the Sunset recommendation will require legislative approval in the 2015 session – and an expected public fight from concerned guardians – DADS is "downsizing" the Austin center in the meantime, citing high overtime expenditures amid struggling employee recruitment and retention. While some supporters of the plan have claimed the DADS decision was not influenced by the Sunset report, the department made clear in its letter that the personnel problems at hand are expected to be "even more challenging" in light of the state commission's recommendation. DADS called for the permanent closures of seven of the SSLC homes on the expansive Austin campus to ameliorate their staffing problems – or as they put it, develop, "a more intensive, census management plan."

The closures will come in waves – three "cottages" were scheduled to be closed by Sept. 15 (although it's unclear if guardian-requested extensions delayed the closure); two more by Oct. 1, and another two by Nov. 1, according to a June letter addressed to families. (Each cottage houses 10-12 patients.) By next year, DADS hopes to transition 120 out of the roughly 300 residents from the center.

In Defense of "Independence"

Heated frustration, tears, and compassionate hugs filled a meeting hall at St. Matthew's Episcopal Church in mid-August. Friends, family, and loved ones of SSLC residents took turns sharing heartfelt stories of the impact the decision will have on their brothers, sisters, daughters, and sons during an emotional rally organized by guardians. They held up faux-candles and pledged to fight the decision by whatever means necessary. And as if to give voice to their voiceless loved ones, family members lined the walls of the room with signs that read: "I'm being kicked out Nov. 1 – help!"; "We are people too, don't abandon us"; "Please don't desert our most fragile citizens."

Marjorie Heaton, president of the Family Guardian Association of the Austin SSLC and event organizer, said the Austin facility has been home to many of the residents for more than 20 years; she called expelling them "unconscionable."

Nevertheless, many community service advocates are equally vociferous in their support for the closure. Dennis Borel, executive director of the Coalition of Texans With Disabilities and a Gov. Rick Perry-appointed former member of the State Inde­pendent Living Council, applauded the Sunset recommendation, calling it a "smart" decision and a "very reasoned" approach. Borel said that while the SSLC resident population continues to decline (74% over the last 40 years), the demand among the disabled to be placed in community settings is high. "We need to provide services when the overwhelming number of people want it," Borel said, "and where it's far more cost-effective than institutional care."

Indeed, it comes down, at least in part, to dollars and cents. The Sunset report notes, "[The] State pays an inordinately high cost [$9,395 more a month] for care in its state-run institutions when viable and less expensive private-sector options exist in the community." The debate over institutional care versus community services is a persistent one, and Borel invokes the core tension: "I think the argument that we need to segregate the disabled does a disservice to independence of the individual," he said. "We are not the same society we were 50 years ago, we now know people with disabilities should be integrated with communities, not segregated."

Joe Tate, a policy specialist with Com­munity NOW! (which advocates "freedom from institutions"), echoes Borel. Insti­tu­tion­al facilities – which he describes as "outdated" – were never meant to house the disabled indefinitely. Rather, he argues, they are intended to rehabilitate and stabilize residents to prepare them for independent living. Tate believes the disabled can find comparable medical and personal services in the community (although, admittedly, not consolidated). Tate and Borel say there is a nationwide shift from state-run facilities to community-based services (more than 190 of 354 SSLCs nationwide have closed since 1960) and Texas has been slow to adapt.

"There is a national trend toward moving away from institutional living; Texas is just last to get on board," said Tate. "We've got to get beyond the mindset of institutional forms of care that are costing our state a lot financially and putting a toll on how we care for people with disabilities."

A World Turned Upside Down

However, parents and families contend that community-based services, while perhaps a better choice for those with less severe disorders, do not suit every disabled person.

What's the difference? SSLCs provide holistic, centralized, and immediate medical care on-site; unlike a "group home" setting, the Austin SSLC houses an infirmary staffed 24 hours a day, and employs physicians, therapists, nurses, and a dentist, all of whom are specialized in treating medically fragile and behaviorally challenged patients. And staff accompany and protect residents when they leave campus on field trips. For families, the difference in care is drastic.

With an extensive professional and academic background in special education and learning disabilities, Forrest Novy insists that not all cognitively disabled people thrive under the "least restricted" environment. Community placement has helped some lead independent, self-sufficient lives, Novy says, but for those with extreme problems that necessitate minute-to-minute surveillance, that setting makes little sense. And the other choice – sending loved ones to SSLCs in Brenham or San Antonio – isolates the disabled and pushes them further away from much needed guardian oversight. "It shouldn't be an either/or situation," said Novy, while visiting his brother Wayne at the center, in early August. "We should be very careful about moving those individuals who are most vulnerable."

He points to Wayne as an example – the 63-year-old plays with colorful wooden blocks from his shared room at the Austin SSLC, fitting them correctly into corresponding shapes, as his brother stands nearby. A nurse communicates with Wayne by signing, but she's not sure how much he can comprehend. When her hands motion for "lunch" something clicks, and Wayne, his bed full of blue squares and red triangles, rises (albeit unsteadily and with assistance) to the occasion. In this moment, like every other, Wayne has only a vague understanding of what will come next. That leaves the anxiety and fearful anticipation of the eventual transition to his caretakers.

"His world is going to be turned upside down," said Novy, Wayne's guardian.

Wayne is deaf, mute, suffers from serious behavioral problems, and is physically unbalanced, causing frequent falls. A community environment would be nothing short of unsafe, predicts Novy.

Evicted and Helpless

In fact, for some, the difference is a matter of life and death. Relegating their disabled loved ones to a strictly community or group home setting can endanger their lives and those around them, several families say. "Without the right environment, Jason can really hurt himself," said Cook. "As his seizure disorder worsens, it's even harder to serve him – this [SSLC] setting is perfect for someone in his condition."

Similarly, Debra and Stephen Wallace's son, Justin, suffers from cognitive disabilities and severe autism. A 12-year resident of the Austin SSLC, Justin, like several of his peers, is prone to self-injury (such as smashing his head through windows and walls) and requires vigilant, constant supervision, restraint by multiple medical employees, as well as immediate access to hospital-level services. "Our son could never survive in the community – if he were to be transferred to a group home, he would be dead in a day or two," said his mother, Debra. "Who is going to be responsible for my son when his life is at risk?"

Ridiculous and Heartless

Closure supporters also point to Depart­ment of Justice intervention, an undeniably glaring scandal, cited in the Sunset report. Following allegations at all 13 centers concerning safety and quality of care, the DOJ and the state entered into a settlement agreement in 2009 that imposed compliance requirements in response to charges of abuse and neglect. (Since then, the DOJ performs conduct reviews every six months to ensure compliance.) Sunset chastised state SSLCs for making "close to no progress" in satisfying the settlement requirements in the past five years. They point to the Austin SSLC as the most mismanaged, and thus, ripe for closure.

However, patient guardians remain unconvinced that the appropriate response is immediate closure, especially given the lack of an equivalent alternative in Austin. Moreover, they argue that if they felt the SSLC was falling short in quality services, they would not be fighting tooth-and-nail to salvage the facility. (All family members who spoke to me said they are fully cognizant of the troubled history, but have no personal complaints about conditions or treatment.) As Heaton put it during the mid-August rally, "I can safely say there are no family members or guardians present here today, or who correspond with us and live outside Central Texas, who are not totally and completely satisfied with the care their resident is receiving at the center. [It] far outshines any negatives that make the headlines."

Additionally, families and some critics of the closure argue the state itself hasn't done everything in its power to improve conditions at SSLCs, and they struggle with the proposal that shutting down the center is the right solution. Indeed, Texas continually fares poorly in its support of disabled residents. In their analysis of disability services nationwide, the United Cerebral Palsy organization ranks Texas 50th, a place it has more or less held since 2007. And according to a 2014 AARP report, Texas lands at the very bottom of a scorecard that measures quality of life and care (49th) and "effective transitions" (47th).

According to Sunset's own report, the Department of Aging and Disability Ser­vices has grown lax in regulating and managing the centers; in fiscal year 2013, DADS recorded almost 38,000 violations, but issued only 225 disciplinary actions. DADS needs to "step up to the plate and more aggressively take on its role as a regulator," the Commission writes. "The center is mismanaged and now my son has to suffer the consequences?" asked Debra Wallace. "That is absolutely ridiculous. That is heartless."

So, the families suggest, the problem is state-inflicted – and rather than rectifying it from within, officials have chosen to burn down the house. "There has been a failure by those in control of the Capitol to do right by some of our most vulnerable citizens," state Sen. Kirk Watson, D-Austin, told the Chronicle. "Too often in [the Legislature] things like declaring a closure is seen as somehow a victory when, in fact, they've allowed this facility to be cited over and over again for not meeting certain standards.

"The goal becomes purely monetary and ignores the very human aspect," Watson concluded. "So I think to some degree, we've missed that point."

Watson has spent the past few weeks on the receiving end of "emotional" pleas from family members of the SSLC. Engaged in conversation with caretakers, Watson expresses sympathy toward their situation and awaits a legislative debate to inject his own ideas about how the state should proceed. (He's proposing a hybrid solution – combining services to serve both the community and SSLC residents, while taking advantage of the new medical school and the nursing school nearby. "I wish we were talking about those potential models instead of an all-or-nothing approach," he said.)

"Top Dollar" Real Estate

While DADS cites cutting costs as a factor behind the closure, families wonder if another financial motive may also be at play – in 2013, the General Land Office recommended selling the "underutilized" property, some 93 acres of prime real estate in the affluent Tarrytown neighborhood, for mixed-use or residential development. Ranking as the second-highest appraised SSLC, the Austin center's current value is estimated at $25 million, a figure lower than the actual market value of the land and property. "Given the prime location of this property in the West Austin area, currently operating at less than full capacity, and with the potential for a more dense use," the GLO wrote, "it is highly likely that the tract would bring top dollar from development interests."

Developers have coveted the property for years. West Austin Neighborhood Group president, Cathy Kyle, is acutely aware of the land's value and believes the decision is largely motivated by the potential monetary gain. She recently described the Sunset plan as "myopic" and "harmful" for the disabled residents and also counter to the desires of the community. The neighborhood weighed in, in favor of keeping the SSLC open, continuing its role in the West Austin community and providing much-needed services to its residents, wrote Kyle in a recent WANG newsletter. The staff report, she noted, also fails to take into consideration the vacuum left in the neighborhood if the SSLC does close its doors: soccer fields, green space, volunteer opportunities, and meeting space will vanish, making room for a mixed-use development, not a "terribly enticing vision" for the neighborhood's future, said Kyle.

To their credit, Sunset Commissioners took notice of the lucrative land value and added an amendment to ensure the sale or lease of the property would be reinvested into services for intellectually and developmentally disabled Texans. "We need to make sure that the Austin site – an asset which we all believe is a very valuable asset – is not used for anything other than helping those in the system and ... not scooped away and used for something else," said Rep. Richard Raymond, D-Laredo, moments before the Commission voted for closure.

Of course, that amendment could eventually get stripped from the proposed legislation during the legislative session. But if that happens, Raymond told me he's confident he can keep the modification intact. "I'm going to fight for it," Raymond said. "And that's a battle I'm going to win."

The Illusion of Choice

Intensifying the frustration among guardians is the lack of an appeals process. Families wishing to challenge the closure decision through institutional channels are struggling to find a pathway. There is no appeal process to contest the closure of a home, admitted DADS spokesperson Melis­sa Gale. If a family member or guardian declines either to transition to the community or select an alternate state supported living center, that resident's case will be referred to a Transfer Review Team, which will then select an appropriate SSLC. (That is, if you don't decide where to place your loved one, they'll do it for you.)

If the guardian doesn't approve of that selection, he or she can appeal it to an administrative law judge at the Health and Human Services Commission, said Gale. How­ever, those who have reached that final stage say the judge could only speak to the appropriateness of offered placements and did not have the scope or authority to allow residents to remain at the SSLC, nor to stop the agency or its directors from closing the residence.

In other words, another brick wall.

Spending night after night awake searching for a path for recourse against the state (or as he described it, "jousting at windmills") Stephen Wallace decided to initiate legal action. At the tail end of August, Wallace – an attorney – filed a federal lawsuit with the aim of halting the immediate closure.

On behalf of his son, Wallace alleges a violation of civil rights and failure of due process, according to court records. The closure will, "endanger or radically alter" his son's life and impose "irreparable harm," the complaint reads. Wallace is calling for a cease and desist of the impending closure until proper legislative or judicial oversight is created. "Right now, these people are being summarily thrown out without the promise of getting the same conditions as they had before," said Wallace.

The state "seeks to forcibly evict the Plaintiff's ward from his place of residence of the past 12 years, without due process, and does so due to the severe nature of the plaintiff's ward's disabling condition," reads the pleading, filed against Texas Health and Human Services Commissioner Kyle Janek, Deputy Commissioner Chris Traylor, and DADS' Scott Schalchlin.

"The state actors, without proper planning or preparation, seek to commence life-changing and possibly life-threatening alterations to this severely handicapped individual's services over the objections of the plaintiff and co-guardian. The hurried closure and eviction actions are based not on the individual needs of the disabled person in the care of the state actors, but on the desire to quickly close and alienate (sell) the current residence of the plaintiff's ward," the suit continues.

Wallace's lawsuit doesn't seek to prevent the eventual overall closure; rather, it's a stopgap effort: "We are hoping this at least slows things down in the meantime and gives us a chance to regroup."

On the activist front, Debra Wallace and SSLC guardians created a Change.org petition addressed to Janek, requesting a moratorium on the eviction until judicial or legislative oversight can be implemented. The petition, echoing the concerns of families throughout the past few months, reads: "If the state is willing to oust its most vulnerable citizens under unjust circumstances, we fear for the future of all mentally disabled, mentally ill, or special needs Texans."

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Austin State Supported Living Center, Carol Cook, Jason Cook, Department of Aging and Disability Services, SSLC, Sunset Advisory Commission, Marjorie Heaton, Coalition of Texans With Disabilities, Dennis Borel, State Independent Living Council, people with disabilities, Joe Tate, Community NOW!, Forrest Novy, Wayne Novy, Debra Wallace, Stephen Wallace, Justin Wallace, Kirk Watson, General Land Office

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