Tuesday, March 8, 2011

Communal living gives independence to British men with Down syndrome

From The Journal in the UK:

They must be two of Take That’s biggest fans and have tickets to see their heroes when their bandwagon rolls into the Sunderland’s Stadium of Light in a couple of months’ time.

They would like to invite their pop star idols home for a cuppa... and that is much more of a possibility now than it used to be.

Six months ago James Olsen, 27, and Matthew Ainsley, 21 – both of whom have Down’s Syndrome – moved out of their parents’ homes and into a terraced house to start a new life, courtesy of North Tyneside Council.

The lads, who have full-time jobs as well as round-the-clock carers, have since learned to shop, cook and do their own ironing.

Matthew works for the Department of Work and Pensions in Benton, North Tyneside, on the Project Search scheme, set up for people with learning disabilities.

His parents, Paul and Kathleen Ainsley, have three other children - Christopher, 19, Jonathan, 15 and Daniel, 11.

Kathleen, 50, of Holywell Avenue, Whitley Bay, said: “It gives the opportunity to show what they can do and what they have learnt. Everyone is entitled to a fair life.”

Paul and Kathleen are unsure of what will happen when Matthew’s time on the scheme ends in July.

Matthew’s hobbies include singing and going to the pub to watch football. He and James also go bowling and love the cinema and they say the best part of their day is when either one comes home from work or any activity they have and talk about their day with each other.

Matthew went to Parkside Special School in Wallsend until he was 19, with one day a week at Whitley Bay’s Marine Park School until age eight.

At the age of 19 he went to Dilston College in Corbridge, where one of his favourite subjects was independent travelling, which encouraged pupils to go on day trips to meet new people and improve social skills.

James, 27, is a keen sportsman and loves working at the Rising Sun farm in Benton, North Tyneside. He especially likes working with the horses but also loves to dance and dreams about working at The Playhouse, Whitley Bay.

James went to Ashleigh Special School in North Shields until he was 19, and then went on to North Tyneside College. His mum, teacher Jean Olsen, said: “James had a fantastic education at Ashleigh School. He was well looked after.”

James played football in the 2005 Special Olympics in Glasgow, where he won a silver medal, and continues to play for the Parks Five football squad, training with them regularly.

Jean, 60, who lives in Monkseaton, Whitley Bay, said: “Matthew and James have a wonderful attitude to life. They are always keen to try everything.”

The two young men have the 24-hour support of a team of five carers, provided by Equal Partnerships Ltd.

Its director Janis White said: “We work with people who have a disability and we provide them with whatever support they need.

“We recruit their staff and train them up to help them with whatever it is they want.”

As well as being one of Matthew’s cousins, Edd Ainsley is one of his support workers.

He said: “Matthew and James have settled in really well.

“Over time, we have seen the progression and change in them both since moving in together.

“They get on really well.”

Each support worker has their own role to help the pair develop.

Matthew and James do all their own chores, including cleaning and tidying their new home – learning all they need to know to live an independent life.

Gill Williams, another support worker and close friend, said: “Matthew and James look at their team as friends, not staff, and we all share the same interests.

“Everybody is quite local. Because of that we have the flexibility, which is why it works so well.”

James said: “I really like my support workers and doing the various activities with them.”

Equal Partnerships Ltd is a small company that offers flexible behind-the-scenes support for disabled and vulnerable people, to make sure everything runs smoothly.

The company, set up in 2009, helps to manage James’s and Matthew’s money, giving them a choice of how to spend it. Janis said: “It’s a pleasure to work for them. We make sure Matthew and James get whatever opportunity they want.”

Matthew’s mum, Kathleen, feels that if more people knew about the opportunities presented by the scheme, many more people would take advantage of it.

She has set up a group called The Cornerstone, where parents of disabled children meet once a month, giving them the chance to learn from her experiences and seek advice about the Equal Partnerships scheme.

Kathleen has also been invited by North Tyneside Council to speak to officials about her experiences and what has been achieved for Matthew and James.

Neither set of parents knew their baby had Down’s Syndrome before birth, and it wasn’t until they pushed for tests that they got the diagnosis.

Neither of their sons have the heart problems often associated with Down’s syndrome. Both young men are susceptible to infections though and need regular medical checks.

Kathleen said: “It was a strain for the family, knowing how to cope with it and what to do next. But knowing what we have been through and what help and support we have had, it wasn’t as bad as I first thought.

“I had a very good midwife and home teacher, who were very supportive, who gave us both information about the Bethany Group for Disabled Children.” This is a mother and toddler group open to children with disabilities and their brothers and sisters.

It was set up in the name of Bethany, a disabled child whose parents, Lynn and Dave Wallwork, now run Whitley Bay’s Cornerstone Cafe.

Jean added: “It has been good for both Matthew and James to have siblings, as they haven’t been treated any differently and it has encouraged them no end.

“They are both very close to their families.”

Jean and Kathleen agree they are very proud of their sons and what they have achieved since gaining their new independence.

Kathleen said: “Matthew has a full and meaningful life and is part of many communities.

“He just feels a part of life. He feels as normal as anyone else. If we hadn’t had Equal Partnerships to oversee, I don’t think we would be where we are now.

“All those with disabilities should be able to have the same lifestyle as Matthew and James.

“There has been a massive change. He is just so confident and so happy and so content with his lifestyle. The only thing he wants but hasn’t got is a girlfriend,” she added.

Matthew’s father, accountant Paul Ainsley, 55, said: “It’s phenomenal the way it has brought them out, living in their own place and doing their own things.”