Stories

Stories of people who have been under guardianship or had their rights restored shine a light on the impact of guardianship and the need for less restrictive alternatives. We are talking with individuals across North Carolina who have lived experience with guardianship and will share their stories here.

Sean’s Story

Sean’s story is a perfect illustration of a sad irony of the guardianship system. Born in the mid-1980s, he experienced a disrupted childhood that included domestic violence. Although he may have had developmental delays—he asks, “Am I on the [autism] spectrum?”— he has graduated from high school and is enrolled in an associate’s degree program at a community college to “take my life to a whole ’nother level.”

Sean’s father petitioned for guardianship some years ago to keep his mother from taking his Social Security check. At first, Sean was living with his father and stepmother, with whom he never saw eye-to-eye. After being granted guardianship, they moved him to a group home 40 minutes from where he was going to school. Sean had this to say about guardianship:

“Some people that have guardians may need one for the rest of their lives if they have a severe incapacity. For others, like me, it should be limited. It depends on the situation.”

Sean was eager to return to court to establish his competency, especially as it related to his driving privileges, which had been suspended when he was found incompetent. Upon his first return to court, the judge told Sean that he needed to obtain a doctor’s note stating that he was completely competent. He then spent several months searching for a doctor who would take Medicaid and was willing to complete an MDE. He reported that he experienced “getting the runaround” between the mental health system and the court.

Through his connections with Rethinking Guardianship, Sean was introduced to a pair of attorneys, one of whom practiced in the county where his guardianship was established. For Sean, “having someone know what the heck is going on—knowing what the judge wants—instead of getting the runaround” made a huge difference. First, his attorneys explained to him that he could obtain the doctor’s note from his regular doctor, and it could be a short note, it didn’t need to be a MDE.

Sean’s rights were readily restored upon his second return to the court, this time with his lawyers and the requested doctor’s note. The local lawyer took him through a series of questions at the hearing, demonstrating his capacity in each of the areas on the capacity questionnaire routinely used in NC courts. Before they reached the end of the list, the Clerk said that he had heard enough to make his ruling, restoring Sean’s rights. When asked how his life has changed since, he says, “Well, it’s completely different. I don’t have to try to track down my guardian. I can move more quickly on the things I want to do. I got my driving rights restored and am now looking for a car.” In addition, Sean is taking a class in arboriculture and plans to look for work going through the Tree Industry Association.

Regarding decision-making, Sean is looking to put a team together that includes a realtor and a certified accountant. He recognizes the value of connections, saying “the right legal counsel will make a big difference.” He appreciates people’s input, but says, “people’s opinions are just that, opinions.” He relies on the Bible and on his strong faith. Looking back, Sean he says he wouldn’t change anything. He says he now knows how to help others and is eager to do so. He plans to remain involved with Rethinking Guardianship.

Jason’s Story

Jason Hines, now 33, grew up the youngest of six in a religious and supportive family in Winston-Salem, NC. When Jason was just 11, his dad died, and it was a difficult adjustment. Nonetheless, he loved music, wrestled and played football in high school, and looked forward to an adulthood accompanied by marriage, a nice house, and a career. In college, Jason began experiencing mental health issues. He would have an episode in which he heard voices and saw visions, but then would be fine. He used drugs as a form of self-medicating. Initially diagnosed with bipolar disorder, Jason believed he was experiencing a spiritual battle (both his parents were ministers). His sister, a clinical psychologist, helped the family recognize that Jason needed more than spiritual help. Eventually, Jason was diagnosed with schizoaffective disorder.

However, Jason’s behavior got worse and he refused to take medication. His family established clear boundaries and tried to help. After being in and out of the hospital many times, Jason was finally hospitalized for 13 weeks, during which he finally agreed to medication.

The strain this caused for Jason’s mother was great. She didn’t sleep, lost weight, and finally expressed the need for help. She filed a petition for guardianship in Forsyth County, and a hearing date was set. Jason came to the hearing from the hospital. Despite majoring in pre-law while in college, he did not understand what was going on. “I knew that I didn’t want my rights taken away. I thought it was a plan for my mom to be against me. It turned out to be the best thing that happened to me.” The Clerk ruled in favor of guardianship.

Initially, Jason was considered high risk and was placed in a less-than-ideal boarding house where he wasn’t safe to even walk down the street to the store. He complained to his guardians and, as he reports, they told him, “We don’t want you to have a guardian for the rest of your life. We think you are smart. If you want another place, YOU find it.” And he did!

He had two co-guardians from Empowering Lives, “one with a tough-love approach and the other a good friend. I wouldn’t be this well without them.” They challenged him to improve his own life. They supported him in managing his mental illness and recommended switching to a periodic injection to replace daily medications and to interrupt the ups and downs associated with a daily dose.

Based on significant improvement, one year after he was placed under guardianship, Jason’s guardians suggested that he seek restoration of his rights. He was not expected to speak at his hearing, but the Clerk asked him if he was ready. Jason, accompanied by his mother and two guardians, acknowledged that he now needs medication to manage his mental illness. Jason recognizes that mental health problems are stigmatized, especially in African American culture, which expects that personal inner strength will always lead to a positive solution. But he also recognizes that he “can’t just pray it away.”

“I went from being everyone’s problem to becoming a valued part of society.”

Today, Jason works as a Visitation Specialist at Empowering Lives. His ability to relate, coupled with his sensitivity, generates good success. “I’ve been through a lot of the struggles that many people with mental disabilities go through. I’ve heard voices, seen visions, and had the mania. I’m not just getting it from a book. I’ve been through it, and when I get together with others, we are united in the struggle.” He still gets some support from the mental health system, mainly in the form of appointment reminder calls, as well as for the decision-making process.

“I do it completely on my own now. Once in a while, I ask my mother for her opinion, but I’m an adult. I make my own decisions. The challenges I faced have brought me to a place where I value the opportunity to help others and appreciate the path that led me to a place of mental wellness.”

Robyn's story

July 14, 2016

Dear DRNC,

When my mom died when I was just 15 years old, my mom was everything to me. I’m the youngest of five. My mom made it her mission to make sure that if anything ever happened to her, I would be taken care of.

Rhonda is the oldest, older than me. Mom wanted to find a lawyer but wound up finding two. I didn’t know this information until I went to a conference to get information about how to get my guardianship restored. That’s when I learned I had two lawyers: Deborah Greenblatt and Sheila Benninger. Deborah Greenblatt made it her mission to have my guardianship restored back to me in 2002. If it hadn’t been for her, I would never have gotten my guardianship.

Till this day I still talk about how I got my guardianship. I always get questions from parents that want their child to have their own guardianship and from adults who have guardians, but want their guardianship restored.

But what makes me the proudest is when I know Deborah Greenblatt gave me my confidence to tell other people about guardianship.

Robyn Dorton
Project STIR Trainer in Self-Advocacy
CIDD - UNC

Maureen's story

Mother and son

“When I was told that I should petition for guardianship, the first thing I thought of was ‘Guardian Angel’ – someone to protect you and guide you. It had no negative connotation attached to it.”

And now? “I think guardianship should be used only if someone is comatose. The reality is that many people are not advanced enough as human beings to put someone else’s needs ahead of their own.”

These are the reflections of Maureen, the mother of Lukas, now in his 30’s who has recently moved in with his father after going through a challenging guardianship process and living in group homes for the past two years.

Maureen was born in Brooklyn, NY where she lived for 35 years. A lifelong potter who is currently enrolled in Sociology and Legal Studies at UNC Asheville, she raised her young son and daughter in an intentional community caring for the elderly in upstate New York in the 90’s and 00’s with a Waldorf School and tutoring from caring, retired teachers.

Lukas, a creative and sensitive child who writes poetry to this day, has congenitally malformed ear canals as well as a CMT neuromuscular disorder, (similar to Muscular Dystrophy) which required special medical attention and surgical procedures in his youth.

In adolescence, Lukas’s behavior began to change and there were safety concerns within the family and community. During that time, Lukas displayed symptoms of a possible mental illness. He moved in with his father and at 19 was diagnosed with Schizoid Affective and Bipolar Disorder.

Lukas’ mother, stepfather and father moved to North Carolina when Lukas was 25. Maureen was able to see him more often and Lukas was writing poetry. Over the next two years, he started getting out, doing things, becoming involved in NAMI, (National Alliance on Mental Illness) once making hotdogs at an event and referring to it as “the best day of my life.”

At 30, Lukas had a mental health crisis, and Maureen was told by a social worker “If I were you, I would petition for guardianship so he doesn’t go back to his father.” Maureen asked two other social workers if she should pursue guardianship and they both said yes.

Lukas was in the hospital when his mother petitioned for guardianship. The Asst. Clerk of Court casually told her that her ex-husband would have his day in court if he didn’t agree. When Maureen expressed concern about the permanency of the guardianship, the Asst. Clerk told her it could always be reversed. There was no information given at the Court on guardianship and its responsibilities and consequences.

From a list, the Assistant Clerk assigned Lukas a Guardian ad Litem, (GAL) who visited Lukas while in a psychotic episode in the hospital, unable to speak for himself at the time, but did not interview friends and neighbors to determine “substituted judgment,” (i.e., speak to people who knew him before his psychotic episode to know what he would have wanted) instead meeting with the two parent’s attorneys to determine “best interest,” which resulted in a recommendation to the Clerk that Lukas be assigned a third party guardian.

On the day of Lukas’ guardianship hearing, Lukas’ father, Maureen, and their daughter assembled in the courtroom and the Clerk of Court ruled in favor of a third party guardian. The hearing was not recorded (this is done at the discretion of the Clerk) and Maureen received the 2 page GAL report halfway through the hearing.

Maureen knew going into the courtroom that the assignment of a third party guardian was the likely outcome. However, at the time, she said to herself, “Maybe this will be a good thing – that we will work collaboratively to help Lukas.”

A second hearing included the assigned guardian and Maureen realized that the collaboration she hoped for was not going happen. The guardian would not speak to her after the hearing, eventually giving her thirty minutes to share all she wanted to share about Lukas and his background.

Eventually, Lukas was taken from the hospital and placed in a group home. Maureen was ordered not to contact Lukas and was unable to see him for three months. She was repeatedly told, “Lukas doesn’t want to talk to you.” However, as soon as he was moved to another group home, he had sudden access to his mail and the telephone and they were back in touch with each other.

In the past month, Lukas has moved back in with his father while retaining his third party guardian. Although it is still early, he is fairly stabilized on his medication and Lukas’ mother and father are seeing a counselor on a regular basis to align their vision and support for him.

What are Maureen’s goals and dreams for Lukas? She wants him to find a place to live and be happy and pursue his own dreams of getting a job and finding a girlfriend. She also hopes he will exercise his creativity through poetry and his interest in cooking.

Finally, together with Lukas' father and stepfather, she envisions a restoration of Lukas’ rights, which wouldn’t be happening without considerable advocacy.

What important change would she make to the guardianship system in North Carolina? “When people go to file a petition, they should be given information, perhaps a brochure, that makes it clear what guardianship is and what alternatives exist. I think there should a 24-hour waiting period time period given to read this information. Guardianship is SO serious and legally binding.”

**Photo – Maureen and Lukas, while living at the intentional community in upstate New York – March 1993

Peggy's story

Twin sisters

The telling of Peggy’s story begins at the end, when she had her last conversation with the new Assistant Clerk of Court in this North Carolina County:

Recently, when asking for help to see her twin sister Jean after three years of being blocked from doing so by Jean’s guardian, despite a recent court order explicitly stating that she had the right to see her sister, the Clerk stated,

“It is not our job to enforce orders concerning the guardian of the person; it’s just our job to review the accounting of the guardian of the estate.” The follow-up question from Peggy: “So whose responsibility is it to enforce the orders of the guardian of the person?” The Clerk’s answer: “Nobody’s.” Peggy’s reply: “What should I do to be able to see my sister?” The Clerk’s answer: “You need to file a petition for another hearing.” Peggy said, “If the orders aren’t enforced from the hearing, what good would this do?” The Clerk did not answer…

A soft-spoken, intelligent Registered Nurse and mental health advocate, Peggy recounted the earlier life that she lived with her mother and twin sister. Born in 1951, the twins were raised by their mother with support from a loving grandmother and an aunt nearby. They played music together in a band, were very active in 4H, went to the Governor’s School in Winston Salem and in general, developed a very close bond.

“Jean was a wonderful musician – she played piano and clarinet and was good in math. She was a very sweet person. We shared everything and mother did her best to raise us.”

In the early 1970s, when Jean was 17 or 18, she had a mental health crisis and was diagnosed with paranoid schizophrenia and delusional schizophrenia. Jean had to leave school so the twins’ mother asked Peggy to leave school too. Later in that decade, Peggy went back to school and became an RN. She worked at hospitals, the public health center and took care of her family - her mother, sister and eventually, her husband.

Peggy’s challenging journey with guardianship and the court system began in the late 1990s when her sister stopped taking her medication and went in and out of psychiatric hospitals during the twelve years she was living next to Peggy.

In 1999, Peggy was told that her sister needed a guardian; Jean didn’t have insight into her illness and wouldn’t accept that she was sick. A social worker from a mental health agency recommended guardianship and referred Peggy to an attorney. The attorney told Peggy that she was “too close” to be the guardian. Peggy listened and believed her.

At the time, the two sisters were attending NAMI (National Alliance on Mental Illness) meetings and shared experiences with others there. A charismatic and persuasive woman attending the meetings took an interest in them. Peggy shared that her sister had a large trust from her father, which she believed was a major factor in this woman’s interest in Jean. Peggy trusted her at the time.

Peggy petitioned for guardianship in 2001 – “I just wanted to do what was best for her” – and testified on Jean’s incapacity (e.g., jumping out of the car and almost getting hit) in court. Jean heard this at the hearing and was upset. The woman from NAMI was in the courtroom and having gained the confidence of the sisters, was named Jean’s general guardian.

Even after the guardianship was assigned, Peggy was still taking care of her sister and the guardian rarely saw her. In 2002, after coming out of inpatient care, the guardian placed Jean in a home by herself and didn’t consult or appear to care what Peggy thought about it. Eventually, Jean was living in an unlicensed family care home, operated by the guardian, and she had run away several times.

In 2006, Peggy petitioned for a hearing to become guardian of the person and estate upon suspicion that the guardian was comingling Jean’s trust funds to benefit her businesses. Although a neighboring county’s Department of Social Services investigated and recommended removal of guardian of person and estate, the Clerk of Court of the county in which Jean had been assigned guardianship ignored the investigation.

During the hearing, the Clerk only heard the guardian’s witnesses and would not listen to Peggy’s witnesses. Although it was found that the guardian had indeed comingled funds, the court allowed her to retain the role of guardian of the person even as the role of guardian of the estate was reassigned to the Public Guardian (a local attorney and a 15-year owner of a bookkeeping business that was set up to aid people with disabilities manage their money).

Persisting in her efforts, Peggy found that her sister’s financial reports, prepared by the newly assigned guardian of the estate were incomplete and inaccurate. Balances appeared to never account for the comingled funds and the Public Guardian let them go through to develop starting balances for the next year.

In the meantime, Jean was living in a small room within a home for over $6000/month from her trust. After the Public Guardian withdrew over $500,000 of Jean’s trust money in five years, he sent a contract to Peggy, asking her to pay for her sister’s expenses, which she did for about a year.

Blocked from visiting her sister, Peggy asked for a hearing in 2008 to be allowed to see her sister and petitioned to be guardian. Unfortunately, the hearing was held on a snowy day and Peggy’s witnesses were unable to get there. During the hearing, the court ruled that Peggy could visit Jean unaccompanied by the guardian but the current guardian was retained.

Peggy visited Jean twice a month for about three years after this hearing, when Jean was placed in another family care home. However, when Peggy could no longer afford to pay over $3,000 a month for her care, Jean’s Guardian of the Person placed her in a family care home that she herself owned and operated. The guardian refused to allow Peggy to visit Jean anymore after this.

To this day, Peggy is blocked from seeing her sister. Which brings us back to the beginning of this story…

“It is not our job to enforce orders concerning the guardian of the person; it’s just our job to review the accounting of the guardian of the estate.” The follow-up question from Peggy: “So whose responsibility is it to enforce the orders of the guardian of the person?” The Clerk’s answer: “Nobody’s.” Peggy’s reply: “What should I do to be able to see my sister?” The Clerk’s answer: “You need to file a petition for another hearing.” Peggy said, “If the orders aren’t enforced from the hearing, what good would this do?” The Clerk did not answer…

Here are Peggy’s comments about her experience:

“There is such a large-scale abuse of the mentally ill financially and otherwise, and their families, by the guardians, court system, social services and family and adult care homes, that the guardian laws and possibly the guardianship system needs to be revised or changed.

There is no accountability or oversight of the guardians or the local court system that is supposed to govern the guardians. With this lack of accountability, the guardian system allows for financial exploitation, fraud, and abuse at several levels. The guardian laws allow for such unlimited interpretation of the law by Court officials, that any basic and vital law can easily be ignored and broken.

The mentally ill are not able to help themselves or to speak for themselves, in many cases, because social workers are told by the guardian that they are unreliable and too sick to be taken seriously.

Many times, family members have not been allowed to participate in care or even allowed to see their mentally ill loved one, even after court orders have been made ordering the guardian to let them see them.

When a system such as this allows such unlimited and ungoverned power of the guardians over their incompetent wards, this system attracts unscrupulous guardians and others who are supposed to monitor the guardians. Especially when large amounts of money are available from federal and state funding and from their ward’s own funds, this provides a very lucrative incentive to become guardian or family care owner.”