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Entries in Mental Disabilities (4)

Thursday
May232013

Mentally Disabled Couple's Legal Battle Ends with New Home

iStockphoto(RIVERHEAD, N.Y.) -- A newly married, mentally disabled couple's dream of living together -- up until now beset by legal troubles and care facilities that refused their wishes -- is about to come true. New York State is providing them with a home of their own.

Paul Forziano, 30, and Hava Samuels, 36, who both have mild to moderate mental disabilities, met seven years ago at a day program run by the Maryhaven Center of Hope, which is part of Catholic Health Services of Long Island. After they met, they immediately began telling their parents about their new friend. It wasn't long before they were calling each other "boyfriend" and "girlfriend."

On April 7, 2012, they married on Long Island's North Shore.

The wedding was initially pushed back because the couple wanted to be able to live together once they were married. So before their big day, their parents began trying to find a way for the two, who lived in separate group homes three miles apart, to establish a home together.

"They started dating, and gradually got more and more serious about each other," Paul's mother, Roseann Forziano, told ABCNews.com. "Four years ago they started talking about getting married. At the time I didn't know if people with developmental disabilities could be married. So I started doing research."

Forziano said that she "naively" approached the Independent Group Home Living Program (IGHL), which has housed her son since 2009, and asked if this could be facilitated. She told ABCNews.com that the state-sanctioned nonprofit that ran the home told her that the couple would not be allowed to share a living space within the program.

Eventually the families would file a lawsuit in January 2013, claiming that the IGHL, the Maryhaven Center for Hope, where Hava lived, and the state were violating the couple's rights under the Americans with Disabilities Act, the Fair Housing Act and the 14th Amendment.

According to that suit, IGHL's clinical director had concluded that Paul and Hava were not capable of cohabitation. The director stated that if a person "cannot wash, cook, iron, and take care of money for themselves, then that person cannot take care of another person," according to the complaint.

Undeterred by this conclusion, Forziano and her husband decided to research the rights of their son and his wife-to-be.

"We went to the law library and looked up regulations," she said. "They said that agencies cannot deny people's civil rights. The state has to regulate the agencies, and ensure that they uphold [Paul and Hava's] civil rights."

Forziano said that she and her future in-laws then had her son and his bride-to-be assessed by psychologists at the YAI Agency in Manhattan to determine whether they were emotionally and mentally mature enough for a sexual relationship. The couple attended relationship counseling, and based on this, a psychologist from the Cody Center for Autism and Developmental Disabilities at Stony Brook University concluded that the couple's desire to marry was appropriate.

Still, the families continued to hit roadblocks in trying to secure housing for the couple with representatives from IGHL unresponsive to the couple's desires, according to the suit.

Ultimately Forziano and her husband, along with Hava's parents, decided that IGHL, Maryhaven and the state had failed to provide adequate assistance in finding Paul and Hava a home. That's when they decided to sue.

Norman Samuels, Hava's father, told ABCNews.com that he and his wife, Bonnie, were repeatedly told by Maryhaven that they didn't feel Hava was clinically capable of being in a marriage.

"We were led to believe that in order to be married and cohabitate, they'd have to prove that they were [capable]. That is not valid," he said. "We were misled. We spent a year and half going through those steps, because we believed it had to be done that way."

Samuels said that that Maryhaven used an outdated mode of psychological analysis to establish whether Hava was able to consent to marriage and sexual relations -- a tool which he says is invalid. Maryhaven, he said, also refused to educate her.

"They said, 'We don't have the facilities to educate them.' That's not even valid," he told ABCNews.com. "They could have hired someone. They didn't want to do it. In our mind they were just against it all along."

Attorney Robert Briglio, who is representing the families, told ABCNews.com that the homes where Paul and Hava reside are trying to maximize the homes' independent decision making, and that the state of New York must be held responsible for how they're run.

"[The state] funds these homes to provide Medicaid waiver services," he said. "That's the program under which the clients are residing. The New York State Office for People with Developmental Disabilities is responsible for that program. They use private agencies like these homes. That doesn't mean [the state is] not responsible for how that program is operated."

Representatives from IGHL declined to speak with ABCNews.com regarding the case.

Christine Hendriks, a spokeswoman for Catholic Health Services of Long Island, said in a statement that Maryhaven Center of Hope has "supported and facilitated efforts" in which clients have expressed a desire to build a relationship in the hope it leads to marriage.

"There are instances where facilitating a marriage is not warranted, indicated or appropriate in our clinical setting," she said in a statement. "When a resident in our judgment is clinically incapable or lacks the requisite ability to consent to the marital relationship or requires a level of service and supervision where an accommodation is not possible, we cannot provide the services necessary to facilitate the marital relationship and cohabitation."

After years of the families' battling the system, the state last year finally came through for the couple when a vacancy opened up in a group home for the mentally disabled in Riverhead, Long Island, run by East End Disability Associates. The group home was asked if it could expand their home of eight residents to accommodate Paul and Hava, and it agreed.

This week, the couple was offered their own one-bedroom apartment in the home. They will move in sometime in July, according to Forziano.

"We went Monday to see it," she said. "They're very excited. They met the other individuals living in the home. We didn't want to throw them from the frying pan into the fire. We did research, had a psychologist go over there and to the guys that live there. Hava's figuring out where the TV is going to go!"

Although the state was eventually able to help the couple achieve their dream, the lawsuit will go on. Both IGHL and Maryhaven had a duty to encourage the couple's desire to marry and cohabitate, according to the complaint.

"The suit will continue, so the state will have to clarify its stance on married people with disabilities," Forziano said. "It's not just marriage, it's any civil right. You see that people are allowed to cohabitate, and IGHL won't, because they don't think it's a good idea. It has to be the same services across the board."

Copyright 2013 ABC News Radio

Monday
Feb182013

Disabled Mother and Gifted Daughter Lead 'Regular' Life

Courtesy of Meg Nielson(PHILADELPHIA) -- Single mom Bonnie Brown is mentally handicapped, yet her 15-year-old daughter, Myra, would like to attend the University of Cambridge, in England, after she graduates from Merion Mercy Academy near Philadelphia.

Three social workers from a county agency spend 29 hours each week with Brown, 48, to help her with everyday tasks such as paying bills. Myra attends a private high school paid for by a benefactor found by the Philadelphia agency Community Interactions.

The disabled mother and her bright daughter may be an unconventional pair. But they don't see it that way.

"My mom does everything that a regular mom does, so I never thought of her as different, and I don't want other people to," Myra told ABC News. Myra said it takes her mother longer to understand things like driving directions, and a social worker confirmed to ABC News that Brown does indeed have a low IQ.

Brown sometimes has a hard time disciplining Myra, social worker Charlene Jordan told ABC News.

"I'm trying to teach Bonnie, you can't be her friend right now, you've got to be her parent. She's going to hate you, but it's all right," said Jordan.

Brown and her daughter represent a striking success story when it comes to disabled parents.

As recently as a generation ago, disabled people were prevented from having kids through state-sponsored involuntary sterilization programs. Starting in the early part of the last century until 1970, public health officials incapacitated more than 65,000 disabled people from being able to have children. Authorities believed the offspring of mentally handicapped people would have presented a burden to society, according to a report from the National Council on Disability.

Today being a disabled parent is less of an oddity, with new laws to protect the disabled, and changing attitudes about their capabilities. But they can run into unjust custody troubles, Mark Perriello, president of the American Association of People with Disabilities, told ABC News.

"Too often parents with a disability face discrimination, state bureaucrats who try to take their child away based on little fact and misconceptions about what it means to be a person with disabilities," he said.

That's changing, thanks to more states enacting anti-discrimination laws for disabled parents that can help them keep custody of their children, but only a federal law would cover everybody, he said.

"There needs to be more support for parents with disabilities," Perriello said.

According to 2010 U.S. Census data, the most recent available, at least 4.1 million, or 6.2 percent of, American parents of children under age 18 have a mental or physical disability.

Between 40 and 80 percent of parents with an intellectual disability lose custody of their children, according to a report released in September by the National Council on Disability, "Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children." That compares with 13 percent for parents with a physical disability.

And then there's the huge psychological and physical toll borne by children who are their disabled parent's main caregiver -- a number estimated to be roughly 1.4 million, according to a 2004 survey by the National Alliance for Caregiving. The survey is a one-time study that hasn't been updated, which underscores the inadequate attention paid to these children in need, said Connie Siskowski, founder of the American Association of Caregiving Youth, a nonprofit in Palm Beach County, Fla.

Children who care for a disabled parent are typically sleep-deprived and depressed, she said. They often suffer from medical problems and drop out of school.

"When you're worried and under a lot of stress, it is really tough to learn," said Siskowski. "I've had kids who say, 'Every time I hear an ambulance go by, I wonder if it's going to my home."

Brown and Myra are "really fortunate" to have access to services, she said.

Copyright 2013 ABC News Radio

Tuesday
Feb282012

Disabled Adults More Likely to Be Victims of Violence, Study Finds

Hemera Technologies/Thinkstock(LONDON) -- Adults with disabilities are more likely to be victims of violence than adults who are not disabled, according to a new study published online in The Lancet.

Mentally ill adults are at four times higher risk for violence, and adults with intellectual impairments are also particularly vulnerable.

A team of researchers from the United Kingdom's Liverpool John Moores University and the World Health Organization analyzed 26 studies on violence against disabled adults, with more than 21,000 participants from around the world.

"About three percent of individuals with non-specific impairments [eg, physical, mental, or emotional, or health problems that restrict activities] will have experienced violence within the past 12 months, rising to almost a quarter of people with mental illnesses," said lead author Mark Bellis of Liverpool John Moores University in a press release.

The violence, he explained, was either physical, sexual or by an intimate partner.

Experts not involved in the research say the study calls attention to the plight of many disabled adults who become targets for a variety of reasons.

"There are a number of reasons why adults with disabilities are more vulnerable to violence," said Dick Sobsey, professor emeritus at the University of Alberta in Edmonton, Canada.

"Many of them are more vulnerable or may have limited communication abilities, either by impairment or by situations they are in," he said.

Jack Levin, professor of sociology and criminology at Northeastern University in Boston, added that they may not be able to fight back or report the incidents to authorities.

Copyright 2012 ABC News Radio

Tuesday
Jan312012

Mentally Disabled Girl May Get Kidney Transplant After All

Keith Brofsky/Thinkstock(PHILADELPHIA) -- Chrissy Rivera, the mother of the 3-year-old girl who was initially told by a doctor at Children's Hospital of Philadelphia that he would not recommend a kidney transplant for her mentally disabled daughter, is "hopeful" the hospital will help after an outcry of indignation online.

More than 37,000 online supporters petitioned after Rivera had blogged about a doctor who called her daughter "mentally retarded" and said he would not recommend transplantation.

Rivera met with Children's Hospital of Philadelphia doctors Friday to see if Amelia "Mia" Rivera, who has Wolf-Hirschhorn syndrome, would be eligible for a kidney. It is up to a larger transplantation committee to decide if the girl qualifies.

"They are moving us through the steps," said Rivera, a 35-year-old New Jersey high school teacher who has two other children, ages 11 and 6. "It is not a 'yes' or a 'no' at this point. But, yes, I am hopeful."

Children's Hospital of Philadelphia had no immediate comment on these developments.

Mia's complex genetic disorder results in severe mental and physical impairments, and specialists have said that without a transplant, Mia would die within six months to a year.

"We had a positive meeting with the nephrologist and the head of nephrology and nursing," said Rivera. "They took us through the steps and told us the risks. No decision has been made, but it's a process...that anybody has to go through."

"I didn't see any red flags at the meeting," she said. The Riveras will meet again with doctors from Children's Hospital of Philadelphia in March to review the girl's case.

In the meantime, Mia is "doing very well," said her mother. "She is very healthy."

The little girl's plight received national media attention when supporters petitioned the hospital through Change.org, which successfully battled Bank of America over its $5 debit card fee and Verizon over its online payment fee.

"The fact that CHOP [Children's Hospital of Philadelphia] is reconsidering Amelia's surgery is a remarkable testament to the potential of online campaigns to literally change people's lives," said Benjamin Joffe-Walt, spokesman for Change.org.

"It's positive and awesome," said Rivera. "We definitely appreciate everything."

Rivera blogged about what she said was her daughter's transplant "rejection" two weeks ago.

The Riveras said a doctor at Children's Hospital had initially advised against a kidney transplant "because she was mentally retarded."

Rivera said the doctor also mentioned the medication that Mia would have to take for the rest of her life -- and "how important it was she take it -- and who would make her take it when we weren't around anymore?"

"Everyone should be treated equally," she said at the time. "This is outrageous."

When the media first reported the story two weeks ago, the hospital would not respond to questions about the Rivera case, citing privacy laws, but it provided a prepared statement, which read: "The Children's Hospital of Philadelphia does not disqualify potential transplant candidates on the basis of intellectual abilities. We have transplanted many children with a wide range of disabilities, including physical and intellectual disabilities. We at Children's Hospital of Philadelphia are deeply committed to providing the best possible medical care to all children, including those with any form of disability."

Wolf-Hirschhorn syndrome, caused by a missing part of the short arm of chromosome 4, occurs in about one in 50,000 live births. Disabilities can vary from child to child but can include seizures, hearing loss and eye malformations, as well as kidney, brain and skeletal abnormalities. Heart disease and frequent lung infections and immune deficiencies have also been reported.

Patients can be denied an organ transplant for a variety of reasons, according to the American Society of Transplant Physicians. Transplantation will not be offered to those would could be harmed by the surgery itself or by the immune-suppression that is required to prevent organ rejection.

Patients with weak immune systems or a high risk of infection, such as some children with Wolf-Hirschhorn syndrome, cannot be immunosuppressed, according to those guidelines.

Some doctors have reported that patients with Wolf-Hirschhorn syndrome have difficulty with anesthetics, because their heads and mouths tend to be small, making it hard to place a breathing tube during surgery.

Patients with severe heart disease may have an unacceptably high risk during surgery. Also, those who are not expected to live five years may also be denied a kidney transplant.

Patients with severe intellectual disabilities may be considered for transplant if the benefits outweigh the potential harm, say the guidelines.

Copyright 2012 ABC News Radio







ABC News Radio