Virginia Woman with Down Syndrome Seeks Power to Control Her Own Life

It wasn’t her turn to talk, but early on during a hearing that will determine the limits of her independence, Margaret Jean Hatch stood up in a Newport News courtroom and cut the judge off in mid-sentence.

“I don’t need guardianship,” she declared. “I don’t want it.”

“Remove her from the courtroom,” the judge demanded.

“Judge, she’s very upset with this,” the woman’s attorney began.

“Don’t do it,” Hatch pleaded.

Hatch, a diminutive blonde known as “Jenny,” learned to read at the age of 6, has volunteered on political campaigns (always for Republicans) and once, after finding a job she wanted, showed up repeatedly until she got it. She also has Down syndrome, an IQ of 52 and tends to shower affection on strangers as well as friends.

The details of Jenny Hatch’s life have come under scrutiny in a complicated guardianship case that is pitting her wishes against those of her parents and testing the rights of adults with disabilities to choose how they live. The 29-year-old wants to move in with friends and continue the life she had, working at a thrift shop and riding her bike everywhere. Her parents want her to remain in a group home, supervised and protected.

The case, which began in August and is set to continue this month, has captured the attention of both major advocacy groups and residents in the Hampton Roads area, who have turned the phrase “Justice for Jenny” into a mantra. For many, the legal fight is about not just who Jenny Hatch is but also whom she represents: anyone born with an intellectual disability or who ends up with one, through either mishap.

“There is a default assumption that people with intellectual disabilities and people with mental illness need people to make decisions for them, that they can’t, with aid, fend for themselves. Which just isn’t true,” said Jennifer Mathis of the Bazelon Center for Mental Health Law, one of several organizations that have expressed interest in the case to the court.

At that August hearing, Hatch was allowed back into the courtroom, but she wasn’t permitted to speak. A reporter’s request to later visit her was denied. Even so, interviews with those who have spoken with her and an examination of court documents show that in the months that have passed, she’s been far from silent.

On bright pink poster board in Hatch’s boxy, uneven penmanship are the words: “Bring My Freedom of Choice Back. Bring My Job Back.”

The poster hung on Hatch’s bedroom wall at a group home before she gave it to her attorney. Now, her friend Kelly Morris keeps a picture of it as proof that Hatch understands what’s at stake.

“She knows what she wants, and she knows exactly how she feels,” Morris said, “and yet everyone disregards her.”

What Jenny Hatch wants — according to numerous reports submitted to the court from the Hampton-Newport News Community Services Board— is to live with Morris and her fiance, Jim Talbert, in Hampton, Va.

The couple met Hatch five years ago when she walked into Village Thrift in Newport News, one of several businesses they own, placed an application on the counter and explained why they should hire her. She returned several times before she got the job organizing 28-cent greeting cards and clothing racks packed with $3 jeans.

Hatch worked only two days a week, but the couple said that rarely a day passed when they didn’t see her. Then, in March 2012, she moved into their home after a bicycle accident left her hospitalized and seemingly with nowhere else to go.

At the time, Hatch had been living near her job with a family friend who was losing her apartment, and her parents weren’t in a position to take her in. Her father, Richard Hatch, who lives in North Carolina with his wife and three children, told Hatch’s case manager he could not give his daughter the level of care she needed, court records show. Her stepfather, Richard Ross, said her mother, Julia Ross, “does not want Jenny to come home because they just don’t get along,” the case manager’s report stated.

Court records detail a contentious relationship between Hatch and her mother, who has health problems. When Julia Ross was asked whether she would allow her daughter to move back in if the family had assistance, the case manager wrote, “Mrs. Ross said, ‘No, ma’am. Jenny told me that she does not want to have anything to do with me.’ ”

Julia Ross, reached at her home in Newport News, politely declined to comment. Richard Hatch, reached by phone, also said he couldn’t speak about the case.

As Morris and Talbert tell it, Jenny Hatch fit easily into their lives and their spacious Hampton house. They turned their sunroom into her bedroom so she would be near a handicapped-accessible bathroom. And Morris’s 15-year-old daughter, Jordan, who has cerebral palsy, grew close to Hatch, who would lay out Jordan’s pajamas at night and brush her hair.

The couple told Hatch’s parents that she could stay with them as long as she wanted, court records show. And they meant it, the couple said, sitting at their dining room table one recent afternoon, fighting back tears as they discussed what happened next.

In an effort to get Hatch a Medicaid waiver, which would entitle her to in-home and community-based services, the couple learned that she would move up the waiting list if she were homeless. So one morning in May 2012, Hatch’s case manager arrived to take her to a group home. The case manager found her on the floor, crying and saying, “No, no, I’m not leaving,” according to court records.

The couple said they told Hatch that the move was needed to entitle her to long-term help and that if she didn’t like it at the group home, she could return to live with them. On Aug. 6, after the Medicaid waiver was approved, Hatch moved back in with Morris and Talbert.

Two days later, Hatch’s mother and stepfather filed for guardianship. Newport News Circuit Court Judge David F. Pugh subsequently placed Hatch under temporary guardianship, first with a third-party agency and then with the Rosses. Since then, Hatch has rotated through several group homes, and anyone who wants to visit her must file an official request with her mother and stepfather.

The portrait of Hatch that emerges from court documents is of an only child who enjoys hanging out at the Republican headquarters near her job, participating in Special Olympics, going to church and watching Rachael Ray’s cooking show. She is described as having “good survival skills” and once called an ambulance when she became dehydrated.

But the documents also describe a young woman who hugs and kisses people she doesn’t know well and who lacks the basic math skills needed to know how much change to expect when she makes a purchase. They describe a person who graduated from high school with a special-education certificate and aspires to be president of the United States.

“Given the chance to change anything about her life, ‘Margaret stated, ‘America, I would lower taxes,’ ” reads a psychological evaluation filed with the court.

Julia Ross told the case manager that her daughter “lies, causes confusion, is inappropriate behaving with men, contacts neighbors relentlessly, and is obsessed with others who are nice to her,” according to a report filed with the court.

Richard Ross explained to his stepdaughter a year ago that the group home provides a secure environment, making it the best place for her, the case manager wrote. “Jenny needs supervision and guidance, and he feels she is getting that and more at the group home,” the case manager said.

The Rosses’ attorney, Harold Barton Jr., declined to speak specifically about Hatch, but he described guardianship as a tool that is necessary in some situations. “There are things that happen in everyday life that you don’t even think about, that you authorize and approve because you have the capacity to do that,” he said. “Well, what if you don’t have that capacity?”

In their request for guardianship, Hatch’s parents asked for the right to decide, among other things, where she lives, whom she sees and what medical treatment she receives.

They told her case manager that having her live with a family friend gave her “too much freedom without supervision,” according to court records. The day of her accident, Hatch was riding her bike in the rain at night. Police said a driver traveling in the same lane honked as he tried to pass her, and she veered the bike into the passenger side of the car. The side mirror broke off, and she fell to the ground, injuring her back.

On his desk, Jonathan Martinis keeps a note that Hatch passed to him in court several months ago. Words are misspelled, and sentences run together. But the message is clear.

“I don’t need . . . gurdenship anymore,” it reads. “Yes I need help. . . . Only Jim and Kelly.”

Martinis, one of Hatch’s attorneys, said he hopes that this case is the “rock that starts the avalanche, that it changes the conversation” about guardianship. The focus should be on what a person can do, not on what they can’t, he said.

“If I go to a mechanic, no one assumes I can’t drive,” said Martinis, legal director for the D.C.-based Quality Trust for Individuals with Disabilities. “Where you and I would be called wise for getting help, when a person with a disability needs help, it’s just assumed they’re incapable of doing anything.”

Hatch did everything but cook for herself when she lived with the family friend for six months, Martinis said. At the time, she didn’t have the Medicaid waiver that entitles her to a range of assistance, from taking medicine to managing money. If she needs an aide to accompany her outside her home, the waiver could provide for that, Martinis said.

A group of seven organizations that represent individuals with intellectual disabilities attempted to weigh in on the case, but the judge wouldn’t allow them to file a brief.

“Extensive research has found that the vast majority of people with intellectual disabilities, including Down syndrome, can live successfully in their own homes and make their own choices,” reads the brief from the Arc of Virginia and other groups.

Assigning Hatch a guardian, the brief says, would lead to her placement in a “segregated group home, isolated from her job, her friends and her community.”

Court records show that Hatch has run away from the group homes, even as she has found friends in those settings and gone on field trips that she enjoyed.

While living in a group home in Hampton, she went to the zoo, the beach and her favorite restaurant, Panera Bread. A supervisor there described Hatch in papers submitted to the court as “adored by all who know her,” but added that the group home was not a good fit for her. It is designed, the supervisor said, for “individuals who are not as advanced and acclimated as Jenny.”

Newport News City Council member Patricia Woodbury said she hopes to testify on Hatch’s behalf when the case resumes July 29.

“I have people all the time ask me, ‘What’s happening with Jenny? Tell her I love her,’ ” said Woodbury, a former high school psychologist with a doctorate in the subject.

She described Hatch as high-functioning, able to volunteer on Woodbury’s campaign with little direction and able to understand that she can’t really occupy 1600 Pennsylvania Avenue.

“Do I say that Jenny can make all the decisions without some support?” Woodbury asked. “No, she needs some support. But she can be reasoned with.”

At the thrift shop on a recent afternoon, the words “Justice for Jenny” were scrawled above the front door. Inside, next to the register, sat a pile of T-shirts featuring Hatch’s face. There was also a framed photo of Hatch in a purple prom dress with the plea: “Please help us bring her home.”

Talbert and Morris, who have become a party to the litigation, said they have racked up about $50,000 in legal bills and have spent countless hours on the case, including managing aFacebook page that has garnered more than 2,200 likes.

“She’s a part of our family,” Talbert said. “We will do whatever it takes.”

Talbert and Morris said that they don’t think that Hatch needs a guardian but that if the court determines she does, they will fill that role.

“It’s about her right to choice,” Morris said. “If she chooses, I want to live with Jim and Kelly and then, six months down the line, she decides ‘I want to live in an apartment,’ that is fine. If Jenny wanted to live in a group home and made that choice on her own, we wouldn’t be where we’re at.”

In a videotaped interview that Martinis conducted with Hatch at The Washington Post’s request, he asked her how she felt about the group home.

“I miss my friends,” she said. “I want to be at my thrift store.”

The conversation was brief and, for the most part, Hatch’s voice remained steady and soft. She smiled frequently. Then Martinis asked what, if anything, she wanted people to know about her.

“I make my own decisions,” she said in a stern voice. “Not you.”

Jennifer Jenkins contributed to this report.

Date: Saturday, July 20, 2013
News Source: Washington Post
Authors: Theresa Vargas