Trevor’s Journey

Housing Option – Shared ownership with Access Ownership scheme

 

Trevor Harkes with Brother

 

Supporting an adult child with disabilities towards independent living invokes a complex range of intangible emotions. Selfless obligation and love wrestle alongside your own needs as an individual, often with responsibilities to other family members.  The decision to relinquish your role as full-time carer is not taken lightly. The interview that Helen Ross conducted with Anne Harkes in Edinburgh encapsulates this, and demonstrates the emotive journey that many parents take in planning for their child’s future.

Trevor, the younger of Anne’s two sons, is 41 years old. When he was just a few months old, Anne was given the devastating news that he had been born with a cyst on his brain that would severely impair his mental development and provoke intractable epilepsy. Anne’s story is one of inspiration, courage and determination to ensure that Trevor had as normal a life as possible and that he eventually made the big step from family home to supported living.

Helen met up with Anne a few months after Trevor had moved out of his family home into shared accommodation. Trevor moving on was something that Anne knew would have to happen one day but in her wildest dreams did not envisage it could all turn out so well.  But you know what they say about dreams…

“Five years ago, I could not have imagined that Trevor would be in a lovely house five minutes away. So, it’s worth dreaming. Even if you think that you are reaching for the stars- why not?”

Although dreamlike, Trevor’s progression towards supported living did not happen overnight, and as Anne explains, it was a long time in the planning. After he left special education, Anne was keen that her son would have the opportunity to experience as fulfilling a life as possible. She was one of the founding members of Parent Pressure, formed in 1985 by parents of children with learning difficulties to campaign for better and more inclusive services. This main aim of this organisation was to ensure that their sons and daughters led an ‘ordinary existence’ and were included in the mainstream of life.

As testimony to their hard work and commitment to their children’s cause, Parent Pressure was successful in receiving government, local authority and health board funding for a three year pilot project at Telford College. This project allowed for a group of young adults with high support needs to attend mainstream college classes supported by a dedicated one-to-one worker.  Classes were chosen to reflect individual interests.  Since Trevor prefers to be outdoors, one of his classes was Countryside Interpretation.  The success of the Telford College project set a precedent for the establishment of Inclusion Alliance, a day service that continues the ethos of inclusivity and community involvement.

Through Anne and her husband’s involvement with SHARE Scotland– the groundbreaking organisation that campaigned and achieved the momentous opening in 1994 of two houses designed to support five adults with complex needs – she began to embrace the idea that Trevor may at some time be able to live independently, either on his own, or sharing with another person. When her husband retired in 2001, the couple were naturally keen to begin the process of planning for Trevor’s future and for their eventual retirement from the practicalities of caring. After several assessments and requests for funding, the family was eventually offered a significant sum of money in October 2009 as a Direct Payment from the local authority in part payment for Trevor’s care.  This would be made up to the full costs of care by his award from the Independent Living Fund. Government benefits would pay for his living expenses. Now all Trevor needed was a house….

Anne was directed to the services of Housing Options through her contact at Ark Housing an association that provides housing and support for people with learning difficulties in the east of Scotland.   In January 2010 she filled out our form. Around this time, she entered into discussions with another parent who was thinking about making arrangements for the independent living of her son. Although this particular mother decided later not to pursue the idea, liaising with her alerted Anne to the various legal details that had to be attended to in sorting out Trevor’s housing affairs.

Of crucial importance was the necessity for Anne and her husband to gain legal status as Trevor’s Welfare and Financial guardian, which gives the parents of adult children with incapacity the authority to make legal decisions on their behalf. This legal process took six months and thereafter Anne began the daunting process of finding a suitable house for Trevor. By now, she had found another potential housemate for him, the son of another mother who lived locally and was looking for her son to move into supported living.

Housing Options pointed Anne in the direction of the Access Ownership scheme, which was funded and managed by LINK Housing Association and offers financial assistance for independent living.  The two mothers then set about drawing up a legal agreement between their individual families that specified their future obligations.

Like most mothers, Anne knew what she didn’t want for Trevor- to be housed at any distance from his family, or in an area with poor infrastructure. The two families eventually viewed a three bed-roomed property equidistant from both families which would accommodate Trevor, his housemate and support staff. The house was conveniently situated on the ‘wrong side’ of the road for the local school catchment area and therefore relatively cheaper than others in the area.  Both mothers loved the house and were really keen that it should be the home for their sons that they had dreamed of…

“I couldn’t thank Housing Options enough. There was never a problem that they couldn’t surmount.”

In January 2011, Housing Options organised a meeting with LINK Housing; representatives from HOS; the local authority housing senior manager; Trevor’s lawyer, and the two families.  The outcome of this meeting was that Link agreed to buy the identified house and sell a share to both men.  Housing benefit would pay for the annual rental of the housing association share.

“For the first time, I began to think, “This might actually work.”

The next step in the journey was to find care staff. Anne had already approached SHARE Scotland to provide Trevor’s care and both mothers were included in the interview process to find the best people for the job. As arrangements were put in place for Trevor to move, and the property suitably adapted for the needs of his housemate, the process of transition began. Not only was it important for Trevor to gain a sense of place, Anne had to learn to get used to him not being in the house. As part of this process, Trevor made daily visits to the house at mealtimes, and in March 2012, he had his first sleepover there. With the finishing touches to the house completed, Trevor and his co owner moved in May, and Anne began to wonder why her laundry load had suddenly shrunk…

“It has taken me some time to adjust, but it is in his best interests and he seems to be coping well with the changes in his life.”

Trevor’s move has impacted on the whole family. Anne is the first to admit that she had, and at times, continues to have, mixed emotions about the whole process. Like any parent whose child has flown the nest, Anne misses Trevor’s company, but she is confident that his is settled in his home from home. His home comforts moved with him- his soft sofa and his hammock in the garden. It has been reassuring for her to watch her son adapt to his new living arrangements so quickly. Trevor is not able to verbally communicate but Anne can sense his contentment. He recently holidayed with Anne and her husband and happily settled back into his new home on their return. This, combined with the excellent standard of care and good communication from the care team, helps to reassure Anne that she has made the right decision for her much loved son.

“If it’s never been done before, it doesn’t mean that it might never be done. We are greatly indebted to Housing Options for expanding the boundaries and helping us find the right solutions.”

Trevor’s case gave Housing Options the opportunity to facilitate co ownership for the first time! We feel extremely privileged, as ever, to have been able to assist Anne and her family in negotiating Trevor’s supported independent living, and we wish them continued happiness and success in their separate spaces.

For those whose situation is similar to those of Anne and Trevor, Anne would offer the following advice.

  • Be prepared that the move towards independence for your adult child with learning disabilities will take time. There are a range of legal issues to contend with, not only relating to house purchase, but also in the pre-purchase stage. Seek advice on sorting out welfare and financial guardianship as soon as you start thinking about moving your child towards independent living.
  • You really need to find out what you are entitled to! Every situation is unique, and don’t feel ignorant if you feel that you don’t know it all. There is a range of dedicated organisations that will assist you in realizing your objectives.
  • Where possible, try to speak to other parents who have been through the process. At times your enthusiasm and commitment will wane in the face of what seems like dire adversity! Those who have been there and got through the process with positive results will be able to support you and may offer shortcuts to success!