At 30 years old, Lela Wilburn would tell you that she has an “awesome” life. She lives with a foster care provider she calls “mom,” has a long list of friends and a boyfriend of many years, loves the day program where she works, and spends her weekends swimming, shopping, getting pedicures, taking day trips, and socializing. As a Medicaid recipient in a home and community-based waiver program in Texas, Lela is fortunate to have the assistance of many service providers she trusts and relies on to live happily and successfully in the community, as opposed to in an institution for individuals with intellectual and development disabilities. And because she has been fully embraced by her foster care provider’s large family, she also has the support of many other people. But for several years, most of Lela’s important decisions have been made by a professional guardianship specialist through the Texas Department of Disability and Aging Services Guardianship Services Program, with little-to-no regard for Lela’s expressed preferences or her desire for increased independence. That is, until she contacted Disability Rights Texas, the federally mandated protection and advocacy program for individuals with disabilities in Texas.
Lela spent much of her childhood in foster care, and because she has an intellectual disability (Down Syndrome) and did not have any involved family, as she approached her eighteenth birthday, a plenary guardianship was created for her almost as a matter of course. The state became her guardian. For the next several years, Lela was moved from group home to group home and formed few bonds with her guardianship specialist or her various service providers. Then, in 2006, she developed an attachment to one of the nurses at her group home but shortly thereafter was moved to a different group home. Several times, Lela ran away from her group home in search of the nurse, so Lela’s guardianship specialist at the time asked the nurse, Judy Freeman, if she would be willing to be Lela’s foster care provider. Judy, believing it would be a temporary arrangement, said “yes.” For Lela and Judy, the rest is history.
Lela flourished living with Judy, growing more confident in her abilities and desirous of more decision-making opportunities. Lela’s guardianship specialist in 2008 assisted her in regaining the right to vote, which she now routinely exercises. In fact, Lela is especially proud of the fact that she and Judy do not share the same political views. Shortly after the probate court granted Lela the right to vote, Lela was assigned to a new guardianship specialist, who did not share Lela’s vision of increased independence or place any value on Lela’s growing self-confidence. The new specialist also seemed to have deeply held negative opinions about Judy. Lela’s requests for greater decision-making authority and to have Judy become her legal guardian were largely ignored.
Guardian of Last Resort
The Department of Aging and Disability Services is the guardian of last resort in Texas. The department’s Guardianship Services Program recognizes that guardianship is highly restrictive of individual rights and requires that guardianship specialists assist their wards with the process of re-establishing their civil liberties to the extent possible. Each year, the Department of Disability and Aging Services guardianship specialist must review each ward’s circumstances to determine whether, among other things: a possible successor guardian has been identified who is willing and able to serve; a less restrictive alternative to guardianship is appropriate and available; or the ward has expressed a desire to have her capacity restored. In addition, the Department of Disability and Aging Services should help the ward in establishing a plan to seek restoration of capacity when appropriate. Despite these annual obligations, Lela’s new guardianship specialist did not acknowledge Lela’s wish to have her capacity restored or her preference to have Judy be her guardian, nor did she help facilitate Judy becoming the successor guardian. To the contrary, the guardianship specialist told Judy that she would need to hire an attorney of her own to make a formal application to the court and also pay to take a course in a city halfway across the state to become certified to serve as a guardian—neither of which was accurate. Under Texas law, when the state is acting as the guardian and becomes aware that a family member, friend, or other interested person is able and willing to serve as the ward’s guardian, the state must notify the probate court (Texas Probate Code Ann. § 695A(a) (2013)). Lela’s guardianship specialist never did this.
Fully aware of Lela’s strong desire to become her own guardian and believing that Lela has the ability to make her own decisions, in the spring of 2012, Lela’s service coordinator at the local intellectual and developmental disabilities authority helped Lela contact Disability Rights Texas for legal representation to restore Lela’s rights. While Disability Rights Texas was still investigating the case, Lela’s case manager took Lela to her primary care physician for the purpose of having a certificate of medical examination completed that would support an application for restoration of capacity. Lela’s doctor agreed, finding that, based on Lela’s functional abilities and the level of support she receives from those around her, Lela should have almost all of her rights restored.
Neither the service coordinator nor the case manager notified the guardianship specialist of their actions. When the guardianship specialist learned of the various efforts underway to assist Lela in gaining more independence, rather than support the process and work with Lela, the guardianship specialist became enraged and retaliatory. She demanded that the local intellectual and developmental disabilities authority remove Lela’s service coordinator from the case and switched Lela to a new waiver service provider, against Lela’s wishes. Worse yet, she threatened to remove Lela from Judy’s home. Disability Rights Texas was able to secure a commitment from the attorney for the Department of Disability and Aging Services Guardianship Services Program that Lela would not be moved, as nothing had happened to make her placement with Judy inappropriate. The guardianship specialist’s conduct and disregard for the rules was aimed at one goal: intimidating Lela into dropping her efforts to restore her legal capacity. While Lela was greatly frightened by the specialist’s threats, the threatening behavior also strengthened Lela’s resolve to see the process through and gain her independence.
As this was all unfolding, Disability Rights Texas agreed to represent Lela in her application for restoration and filed the application in early 2013. Under Texas law, a ward may retain counsel for purposes of either full restoration or modification. Our hope, in agreeing to represent Lela, was that we could convince the rural county probate judge, who was not an attorney, that in addition to her own decision-making abilities, Lela had the benefit of extensive supported decision-making because she was surrounded by individuals she considers family and various service providers whom she trusted to help guide her (see Nina A. Kohn, et al., Supported Decision-Making: A Viable Alternative to Guardianship?, 117 Pennsylvania State Law Review 1111 (2013)). Essentially we hoped to advance the message of Article 12 of the United Nations Convention on the Rights of Persons with Disabilities that “persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life,” and that persons with disabilities should be provided access to “the support they may require in exercising their legal capacity.”
Lela was the ideal case to test these theories. She is very healthy, takes no medications, has no maladaptive behaviors, and had the professional support of everyone she worked with, except for her guardianship specialist. Because she receives Supplemental Security Income and has a representative payee, we did not have to worry about her ability to make complex financial decisions. Lela did not want to live independently or stop receiving any of her services; she simply wanted to be able to direct those services and have control over where she lives and with whom. Even if she ultimately made choices that had negative consequences, she should have the right to make the same bad decisions the rest of us have the opportunity to make. Since Lela also very much wanted to be out from under the control of her guardianship specialist, when we filed the application for restoration, we also asked for removal of the current guardian and the appointment of Judy as successor guardian, in the alternative.
Challenges to Disability Rights Texas’s Representation
Several of Lela’s current and former service providers were more than happy to contribute to her restoration efforts but did not have the permission of the guardianship specialist and were taking a risk by speaking with Disability Rights Texas and helping build our case for Lela. When the Department of Disability and Aging Services Guardianship Services Program would not formally authorize Disability Rights Texas to speak with Lela’s various service providers or obtain her medical records, Disability Rights Texas sought the court’s appointment as Lela’s attorney ad litem. While a ward may retain legal counsel in a restoration or modification proceeding, the probate court, under Texas law, is required to appoint an attorney ad litem (Texas Probate Code Ann. §§ 694C, 694K (2013)). The court had not done so, and we hoped this appointment would eliminate this obstacle to our ability to represent our client zealously. Our gamble backfired, and the court denied Disability Rights Texas’s motion, instead appointing a local attorney. This decision was concerning on a number of fronts. First, the local attorney ad litem did not respond to any of Disability Rights Texas’s communications, even up to the date of the first scheduled hearing, nor did he contact Lela. He filed a motion for continuance, which the court granted, just hours before the court closed on the eve of the hearing. Second, given the ambiguity in the Probate Code created by the right of the ward to retain counsel but also the obligation of the court to appoint an attorney ad litem, we were not sure whether the court would even permit us to participate in the rescheduled hearing. Prior to the hearing, we confirmed that the court proceeding would be recorded so that we could obtain a transcript, if necessary, for an appeal of the court’s exclusion of the ward’s retained counsel. Thankfully that was not necessary.
Ultimately the court’s appointment of a local attorney worked to Lela’s benefit. The attorney ad litem had little experience working with individuals with disabilities and did not understand the various service delivery systems in Texas. He was willing to defer to Disability Rights Texas’s strategy on virtually every matter, and we certainly benefited from his handling of the cross-examination of the witnesses from the Department of Disability and Aging Services Guardianship Services Program, who were extremely hostile. And perhaps most importantly, he was not an attorney from a big city organization who came to a small, rural town to grandstand or show the locals what was what. The fact that the attorney ad litem was fully behind the notion of supported decision-making or, in the alternative, the removal of the state as guardian, meant Lela benefitted from having two lawyers on her side—one who knew the legal arguments and the other who knew that particular court.
The Parade of Witnesses
The morning of the hearing had a number of surprises. First, the attorney for the Department of Disability and Aging Services Guardianship Services Program indicated a willingness to settle the matter, not by agreeing to any greater decision-making authority for Lela or appointing her preferred successor guardian, but by appointing Judy’s son-in-law as successor guardian. The State insisted that Lela still needed the benefit of a guardian for all of her decisions but said that it would be willing to step aside, so long as the guardian was not Judy. Lela’s response was the second surprise. In preparing for the hearing, Lela had struggled with my questions and expressed fear about testifying and seeing her guardianship specialist in the courtroom. We had also talked about the various outcomes, and Lela had expressed that, while she wanted to be her own guardian, more than anything she wanted the guardianship specialist to be out of her life. When her attorney ad litem and I presented the settlement offer, we both expected Lela to agree quickly so that she would not have to go through with the hearing; we were wrong. Lela said that she wanted the chance to be her own boss and that she was ready to tell the judge that.
For the next four-plus hours, the court heard from a parade of witnesses who testified about Lela’s many strengths, as well as her affection for and trust of Judy and the current and former case workers and service coordinators. Lela’s own testimony went beautifully. She stumbled occasionally, but she made it very clear that she wants to be independent, that she is able to do many things without assistance, and that she knows when to call on her circle of support for help. Conversely the guardianship specialist and her supervisor’s testimony focused on Lela’s low I.Q. and the blanket assumption that someone with Down Syndrome cannot make her own decisions. They also raised the specter of Lela choosing to stop receiving waiver services and refusing professional assistance, although nothing in Lela’s history or personality suggested this was a concern. Despite her responsibility for Lela’s health and safety, for example, the guardianship specialist testified that she would notify Lela’s biological mother if something happened to Lela, even though Lela’s mother’s parental rights were terminated and Lela has absolutely no contact with her. When pressed, the guardianship specialist just kept saying that it would be the “right thing to do.”
The judge reached his decision quickly once the testimony had concluded. He said that he was not comfortable modifying Lela’s guardianship at this time, but he was convinced that Judy should be Lela’s successor guardian because it was obvious that they had a wonderful relationship, that Lela had become a part of Judy’s family, and that it was Lela’s clear preference. Additionally, he noted that because Judy had testified that Lela should make her own decisions, he believed his order would effectively give Lela greater independence and decision-making opportunities, while maintaining the court’s jurisdiction on paper.
While Disability Rights Texas was disappointed that the court would not expand Lela’s legal authority over her own life, Lela was ecstatic with the outcome. She viewed the whole experience as a victory. Not only would the woman she calls “mom” become her guardian, but she spoke up for herself under difficult circumstances and emerged from the hearing in a materially better position than when she had gone into it. And Judy told me just moments after the decision that she intended to go back to the judge after a year had passed, which is required under Texas law, and ask that Lela’s rights be fully restored.
As an attorney who fights for the rights of individuals with disabilities, at the end of the day, I too had to see this case as a win. We had certainly educated a number of people—the judge, the attorney ad litem, and the Department of Disability and Aging Services Guardianship Services Program staff—about the importance of supported decision-making and the principle that we all should have the right to make bad decisions. And hopefully the next time Disability Rights Texas has the opportunity to fight for an individual’s right to supported decision-making, the next client will emerge from guardianship, free to make her own choices.
Not surprisingly, even after the court issued its decision from the bench, the guardianship specialist continued to interfere with Lela’s wishes. When there was an unexpected delay in the issuance of the letters of guardianship, the guardianship specialist threatened Judy that she had not timely sworn the oath required under Texas law and, as a result, the Department of Disability and Aging Services Guardianship Services Program would remain the guardian. The guardianship specialist also intimated that since she would remain Lela’s guardian, she might not approve an upcoming vacation Judy had planned for Lela and some of her family members. Disability Rights Texas was able to address this misrepresentation quickly, but it certainly raised questions about the guardianship specialist’s unusual pre-occupation with Lela’s foster care provider and her willingness to create anxiety in her ward.
Once the letters of guardianship were issued to Judy, everything else fell into place. Lela now works with her former service coordinator, and Judy also switched Lela’s waiver services provider back to the organization that had helped obtain the favorable certificate of medical examination. Lela continues to report that she is thrilled that her “mom” is now her guardian and that she gets to make all of her own decisions. And I recently received a photo of Lela and Judy swimming together while on their planned vacation in Florida.