Alleged victim's vulnerability challenged by defence

by Sasha Borissenko from The Nelson Mail:
A woman with Down syndrome who says her carer grabbed her head and pushed her face close to an element is not a vulnerable adult, a defence lawyer says.
The carer, Deborah Michelle Waugh, is on trial in the Nelson District Court.
She denies a charge of ill-treating a vulnerable adult.
Defence lawyer Brett Daniell-Smith yesterday argued that Waugh did not mistreat the 25-year-old complainant.
He told the court that although Waugh was a gruff woman, she had a kind and gentle heart.
The Crown alleges that Waugh, 60, ruled the house where the woman lived through fear, creating an unhealthy and unpleasant atmosphere.
Staff working under her raised concerns but a complaint file went missing.
Daniell-Smith and Crown prosecutor Jackson Webber gave their closing statements yesterday.
Waugh worked for Intellectual Disabilities Empowerment in Action (Idea) as a support worker and facilitator at a Collingwood St home for people with intellectual disabilities for six years.
The alleged events in question occurred between October 31 and December 25, 2012, but were only brought to light in April 2013.
The Crown alleges that any complaints were covered up by Waugh's manager and friend.
The alleged incidents only came to light after the manager and friend left the organisation.
In his closing address, Daniell-Smith said that in his view, the complainant did not fit the definition of "vulnerable adult".

Mom, daughters charged with starving family member with Down syndrome to death

by Joseph Kohut from the Scranton Times Tribune:
For two years, Robert Gensiak's world was his bedroom.
It was there, his family kept him from doctors, even when his skin cracked and bled and open sores formed from being forced to stay in his child-sized bed covered in feces.
And it was there, the 32-year-old Taylor man with Down syndrome wasted away to 69 pounds because his mother and sisters were starving him to death.
On Wednesday, about three months after Mr. Gensiak died, police charged his mother, Susan Gensiak, 59, of 12 Williams St., and two sisters, Joan, 35, and Rebekah, 24, with murder.
Read the complaint HERE
"This is the worst case of neglect I've seen the last 26 years," said Lackawanna County District Attorney Andy Jarbola at a press conference Wednesday. "This family, the mother and two sisters, basically let this young man rot to death."
Mr. Gensiak had been weakening and could not walk without assistance by the time the family called an ambulance on March 19 at the urging of his doctor, Paul Remick, D.O., whom they had not taken Mr. Gensiak to visit for two years. Mr. Gensiak was taken to Regional Hospital where doctors said he had severe psoriasis associated with hypothermia. His body temperature was only 92 degrees.
He died March 20, and weighed just 69 pounds, police said.

man with Down syndrome left on Bus

from NBC Chicago by Lauren Jiggetts:

A mother was demanding answers Friday, claiming the driver of a service bus left her son alone on a cold bus for roughly eight hours.

Greg Dunkin, who has Down syndrome, wasn't discovered until passengers boarded the bus to go home at the end of the day. The 33-year-old was still wearing his seat belt.

Dunkin has been transported by bus to the Sertoma Centre, an Alsip facility that provides support services for adults with disabilities, for more than five years. He got picked up Friday but never made it through the front doors of the building.

Yolanda Dunkin, a nurse, rushed to the facility when she got a call from staff alerting her to what happened.

"He didn't have anything to eat. He couldn't go to the bathroom. He was just strapped in one seat in the back, just sitting there," she said.

To make matters worse, Dunkin said it's not the first time her son has been left behind. A similar situation happened two years ago, she said.

"They put rules into place and they said it wouldn't happen again. They are supposed to call me if he doesn't show up. I never got a phone call to say he wasn't there," 

With this second incident, the mother said she plans to look for another care facility for her son.

"You have disabled adults that are being left on the van, in the cold, and they are getting away with it. This has happened too many times with him," she said.

Dunkin said the center told her the driver who left her son behind on Friday would be disciplined. She's also filed a police report, and Alsip police said the case is under investigation.

Attempts to reach staff at the Sertoma Centre were unsuccessful Friday.

Source: http://www.nbcchicago.com/news/local/alsip-down-syndrome-man-service-bus-185120501.html#ixzz2H2IgkwI1

Princess Diana's goddaughter who has Down syndrome ‘When will I be normal?’

from the Daily Mail by Rosa Monckton:

Having been away for a few days, I walked into the house to be met by my 16-year-old daughter, Domenica, usually so happy and bouncy.

‘Why am I a Down’s Syndrome?’ was her greeting. ‘Why can’t I do maths?’ Followed by the most heartbreaking question of all: ‘When will I be normal?’

As a mother, you always worry about how your children will cope when you are not there, but you can reconcile yourself to the idea that they will be fine, and independence will be the making of them.

Every September, there appears a flurry of agonised articles by mothers wondering how they will cope with empty-nest syndrome as their children leave home for university.

As a mother of a child with a learning disability, I would give anything to have that problem, and I read these articles through tears of rage.
 For every parent of a disabled child, the thought of that child becoming an adult is terrifying and all-pervasive.

I know that in some sense Domenica is never going to grow up, even if the law, once she turns 18, will regard her as an adult like any other.

Domenica, despite her encyclopaedic knowledge of teenage programmes on the Disney channel, cannot tell the time.

She is unable to tie her shoelaces or her dressing-gown cord. She cannot put her hair in a ponytail or go out on her own. And none of this will magically change when she becomes an adult in the eyes of the law.

This turning point is a huge problem for those with a learning disability. There is no allowance for the fact that a disabled child will become a disabled adult, seemingly no understanding that a lifelong learning disability is exactly that – lifelong.

Overnight, vulnerable children are thrown into the lion’s den of adult services, often with disastrous results.

There needs to be a recognition that a learning disability does not change from childhood to adulthood. Perhaps part of the problem is the replacement of the word ‘handicapped’ with ‘learning disability’.

The impression created is that we are dealing with people who are just a little bit slow.In general, when people talk about disability, they mean a physical disability. In those cases, the person with the disability is as self-aware as anyone is, but when you are dealing with a mental disability the issues are much more fraught.

I find it very difficult to explain to Domenica why the people she was at school with have moved on, and all seem to be doing things she is unable to do.

The looming question, that colours every decision I make, is: what will happen to Domenica when we are no longer around to look after her? She fears independence because she is self-aware enough to know that it will be very difficult for her.

I wanted to meet other parents on the same journey, and this became the subject of the BBC documentary Letting Go, to be shown this week.While making the film, I met a mother whose life expectancy was limited, and who had to make the terribly painful decision to move her teenage son out of her home so that he would have time to adapt to living somewhere else before she died. 
 I am in touch with one mother who is in her late 80s, and her disabled son, who is now in his 50s, has always lived at home. He is not capable of living anywhere else and she is confronted with her own mortality. It is far too late for him to adapt to living elsewhere.
 Domenica has always been in mainstream education. A school for pupils with mild learning difficulties would perhaps have been better – madness, a child like Domenica sitting in a chemistry class – but, within our county, they have all been closed.
 She has now been lucky enough to get a place at Chickenshed, an inclusive theatre company and performing arts day school in North London. She is doing a BTEC extended diploma in performing arts, a sixth-form course.

She is happy there, but is now convinced that she could have a career on the stage, and be a pop star and a supermodel. She sees no reason at all why this should not be possible. I realise many children of The X Factor generation have these delusions, but it is particularly pronounced in a child like Domenica.

I don’t in any way want to limit her horizons, but I feel that I must manage her expectations. I have to make sure Domenica has certain skills that will perhaps, in the future, enable her to get out to work, and be part of a community.

She has already done a week-long waitressing course at Chalk Farm Hotel near Eastbourne, which employs and trains only people with learning disabilities, and I will encourage her to do more in that vein.

It is very important for all people with learning disabilities that they become as independent as possible, and don’t stagnate in some form of institutional care, staring slack-jawed at a television screen all day long.

It is vital to have the sense of self-esteem that comes with doing some honest work, if they are at all capable of it.Where these young adults live is an overwhelming problem for parents. The disability lobby in this country has been driven by those with physical difficulties, while those with a learning disability have been dragged along in their wake.

While it is absolutely right that people with physical disabilities should be living independent lives, it is not necessarily appropriate or even possible for those who are more vulnerable and trusting.

There is an ideology that says that everyone is the same, and has the same right to live independently. This is putting people with learning disabilities into inappropriate accommodation, often with only two hours of care a day, and in flats on their own.
 The sense of isolation that they feel, but cannot express, is heartbreaking to witness. What sort of society thinks this could be a suitable way to live? What sort of society allows the social worker, without the parent present, to interview the ‘client’, and after half an hour decide a flat in the community is an appropriate setting?
 Some inspirational parents I know, unable to find somewhere suitable for their daughter, rented a house in Hove, where she now lives with four friends.
 There is always someone there at night, and the number of carers in the day depends on what they are doing.
 The atmosphere in the house is that of any group of young people living together. There has been such a demand for places that they have now opened two other houses. They have constant battles with the local authority, which would prefer for these young people to be living in single-occupancy flats.

One mother told me that her daughter, who has Down’s Syndrome, was moved into a flat on her own. After six months, she had put on five stone. Her mother spoke to the social worker, who replied that ‘It was your daughter’s choice’ to eat all day long, and cited the Human Rights Act. This young woman is not capable of making such a choice, and needs support and guidance, not another packet of crisps.

 Another mother wrote to tell me that an Adult Services Reviewing Officer had written to her daughter, asking her to think about her ‘goals for the year’, and what she was ‘hoping to achieve’. Her daughter cannot walk, talk or feed herself, and has no mental capacity.
We have a system in place in our country that is supposed to support the most vulnerable, but it is failing. It has become so complex and unintelligible that it is not helping those who need it most.
 I accept a system that hopes to deal with disability from cradle to grave cannot have clear-cut simplicity, but over the years there appears to have been little joined-up thinking, and I suspect even the professionals have lost their ability to make good decisions.
 One vast improvement would be to have a single assessment of the needs of families, rather than the endless to-ings and fro-ings between various departments that currently makes the system both intimidating to the user and far too time-consuming.
 In opposition, David Cameron, who himself was the father of a severely disabled child, told me that this would be his preference, but nothing has changed.
 I have had dealings with Government: I have sat on various committees, had meetings with Ministers, and even one with the Prime Minister, but there seems to be a bureaucratic inertia that is holding the Government back from making the necessary changes.
 In 2010, George Osborne announced an extra £2 billion a year for social care by 2014 in his Comprehensive Spending Review, but this money – supplied by the taxpayer and granted to local authorities – is not ring-fenced.
 Local authorities are not legally obliged to spend the money on what it was intended for, resulting in a postcode lottery for parents.
 The Government defends this on the grounds of ‘localism’, and says it is up to the local authority to decide whether to use it for the purpose it was given.

As a result, I know of several parents who have had to move away from their families and friends in order to secure better provision.  All I want for Domenica is for people to accept her as I do, to recognise the contribution she can make, and to keep her safe.
 All my maternal instincts scream at me to keep her with me at home for ever. But then what happens when we die?
 And here is how I answered her questions. ‘Why am I a Down’s Syndrome?’; ‘You’re not, you are Domenica.’
 ‘Why can’t I do maths?’;  ‘I can’t either.’
‘When will I be normal?’; ‘No one is normal, we are all different.’
But some are more different, and more vulnerable than others.

Christmas wishes come true for man with Down syndrome

from Boston Herald by Richard Weir:

When a widowed friend died suddenly in March, leaving her 37-year-old son with Down syndrome alone in the world, Robin Lungo became his adoptive mom — a deed that nine months later has renewed her Christmas spirit and provided her a gift she can’t buy at the mall.


Despite living on a meager disability check and battling breast cancer, Lungo, 58, a widow herself and mother of a grown daughter, kept her promise to her late 71-year-old friend Mary and took her son William Marshall Jr. into her small Somerville apartment.


She has dug into her savings to keep up William’s routines, taking him to the movies once a month and to his weekly bowling league, and splurging on the popcorn he loves at both. But Christmas was proving to be a hardship because Lungo knew William cherished the holiday and was used to a bounty of gifts his mom would leave under their tree on Christmas and Little Christmas, an Irish celebration on Jan. 6 marking the Feast of the Epiphany.


“He believes in Santa. He can’t wait for him to come. He’s got his list on the refrigerator. After Thanksgiving, he was sitting in the chair, and he says to me, ‘He’s coming. Santa’s coming.’ Every time I say it, I get goose bumps,” she said. “William is used to a big Christmas.”


“Derr Sante Clus,” begins the list that William penciled on loose leaf paper in a 6-year-old’s syntax and proudly showed a reporter, itemizing the things he needs (a new hat, gloves) and wants (Disney DVDs, CDs of oldies music).


“My husband died Thanksgiving 18 years ago. It hasn’t been happy Christmases for me for a while,” said Lungo, who said having William in her life has brightened her holidays. “He will come over and just rub my face and give me a hug and a kiss. He’s very affectionate.”


So she dusted off her artificial tree and, for the first time in years, strung lights and hung decorations to make her home more festive for William. But still she fretted about finding the money to buy him gifts.


A friend, however, wrote a local Down syndrome support group seeking help in buying gifts for the man with the boyish spirit who still believes in St. Nick. The group’s founder, Melanie McLaughlin, whose daughter Gracie, 4, has Down syndrome, was so moved she reached out to her network of moms and collected three bags of donated gifts and $150.


“It’s a beautiful thing that she did. She’s honoring her friend by caring for her son, whom she’s known for a long time and clearly loves. It’s not easy. She’s living paycheck to paycheck,” McLaughlin said.


A grateful Lungo said the presents will make William so happy today and make her smile as she watches him open them.


“The whole spirit of giving and Christmas has come full circle for Robin,” said Lungo’s friend, Jackie Murray, 56. “She’s always been a giver and with William she has received the true joy of Christmas. His gift to her is the gift of love.”


And, explained Lungo, a renewed purpose in life.


“He gives me a reason to be here, too. I’m a three-time cancer survivor. I think that’s why I’m here. To take care of William. It’s kind of my job. I promised I would do it and I’m doing it. Right, William?”


“Yep,” replied William.