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Home-based support

Promoting Independence

Trapped in her own home

Supporting a disability consumer receiving care from a Maori provider

Hearing about independent advocacy at last

Problems with home care

Advocacy process empowers a consumer

The importance of the right carer for effective communication

Difficulties in getting home support

Monitoring support workers

Meeting to discuss issues of mobility

Being included in meetings regarding your own future

Clarifying the role of an advocate

Being involved in decision-making

Independence in decision-making

The importance of communication

Improving home support services

Correcting misleading information impacting on home support and independence

Making a really big difference

Independence and decision-making

Accommodating the needs of people with disabilities

 

 

 

Promoting Independence

Caregiver ~ Right 3 ~ dignity & independence ~ Office of the Privacy Commissioner (OPC) 

The mother of a daughter who has a disability phoned the advocacy service to express concern about the care provided. The mother felt that the caregiver was not promoting her daughter's independence and felt she would rather provide the care herself. The caregiver expressed her anger that her hours were to be cut as a result. 

Within an hour and a half of the mother and caregiver having the discussion the care-giving agency rang to say that the caregiver had reported seeing drug paraphernalia on the daughter's bench and would no longer provide care. She also said that a file note had been made on the daughter's file. The mother wanted to complain about both the care and the file note. 

The advocate discussed how she could assist with the care issues and suggested that the mother may wish to take up the matter of correcting the file through the Privacy Commissioner's office. The advocate assisted the consumer with writing to the provider outlining her concerns and requesting a meeting.  

The complainant met with the provider. She was able to articulate her concerns about the caregiver creating a dependent situation for her daughter. The provider apologised and they discussed strategies for promoting the consumer's independence.

The consumer's file notes were also amended as a result of the meeting. The complainant was very happy with the outcome and felt sure that if other issues arose she would be able to advocate on her daughter's behalf directly with those involved.

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Trapped in her own home

Wheelchair Agency ~ Right 3 ~ dignity and independence ~ Right 4 ~ appropriate standards ~ Right 5 ~ effective communication

A consumer contacted an advocate for support to address her concerns relating to her wheelchair. She said the provider had modified the chair but she felt the modifications were ineffective and dangerous. The consumer advised she had previously been loaned two chairs to assess which would be the most suitable and that the provider had made an application for funding the one they thought most suitable. However the consumer felt the arms were too short, the seat too long, the cushion was lumpy, and the positioning of the power pack on the back of the chair had caused the chair to stop suddenly when it caught in the door. The consumer said she had been unable to disengage the chair from the door frame and had to phone her caregiver for help. 

The consumer stated family, friends and caregivers had complained to the provider about the situation but the provider insisted there was nothing to worry about. He felt that his modifications would suffice in the meantime as he thought the consumer's health was deteriorating.

The consumer advised that her general health was fine however she had not been able to move independently outside her home for some months and it was making her feel depressed. 

The family and consumer had found the provider to be quite impatient and rude whenever they contacted him and as a result had decided to contact an advocate for assistance. 

After discussing the options the consumer requested the advocate contact the provider directly as both she and her family had attempted to address the matter a number of times and she had no desire to speak to him again. The consumer requested the advocate arrange a meeting with the provider and service manager so they could see the difficulties the consumer was experiencing.

The consumer's main issues were:

1.   Why did the provider not recognise the modifications made the chair dangerous?

2.   The consumer and family felt the provider was domineering and intimidating.

The consumer's desired outcome was to have a chair that promoted independence and freedom of movement both inside and outside her home.

The advocate contacted the provider and service manager to arrange a meeting at the consumer's home. When contacted, the provider said the chair met the needs of the client - the modifications made were all he could do with the limited resources available. He went on further to say the consumer's family was satisfied with what was happening. He was waiting on confirmation of funding in order to take any further action. He also advised that he had written to the consumer to keep her advised of what was happening.

The advocate pointed out that the meeting was the place for the discussion to enable the consumer to hear what the provider had to say. The meeting was duly arranged.

At the meeting the consumer was supported by the advocate and her caregiver. She was able to explain how ineffective she found the chair, and with the help of her caregiver, to demonstrate the difficulties she experienced while using the chair. 

The service manager agreed that the chair was unsafe and apologised to the consumer for making her housebound. It was agreed that the modifications were not appropriate and needed to be done properly. The service manager went on to explain the process for assessment and funding and the timeframe associated with processing applications and accessing the appropriate equipment, some of which needed to be imported. The consumer was advised that once all the material arrived they would pick up her chair and modify it within a couple of days.

The consumer stated she was very happy with the outcome of the meeting and wondered why the provider had not responded like this in the first instance. The consumer received her newly modified wheelchair six weeks later and was very happy and grateful for the advocacy support.

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Supporting a disability consumer receiving care from  a Maori provider
Home Care Disability Support ~ Right 4 ~ appropriate standards ~ Right 5 ~ effective communication ~  Right 10 ~ complaint ~ Maori provider
A disability consumer sought the support of an advocate because she was dissatisfied with the home care support she was receiving from a local Maori provider. Since the consumer had moved house and her long term Kaiawhina had left a few months ago, she had several changes of workers and on-going issues with the service. The on-going issues included the number of hours; the quality, standard and type of service provided; as well as ongoing communication issues with the local service coordinator. Prior to advocacy becoming involved, a resolution meeting was held to try and resolve these issues but the consumer still continued to receive an unsatisfactory service and didn't have a written copy of the care plan that was agreed to.
The consumer decided that the best way forward would be to hold a further resolution meeting with all parties involved present, as well as the advocate.  The focus of the meeting would be to discuss and set in place a written care plan for the consumer. This was then finalised during the resolution meeting that followed, with the advocate present. 
The provider acknowledged that the services provided to the consumer has not always been consistent with contractual requirements and not always of the highest standard. It was agreed that the care plan now adopted will be reviewed and updated regularly and as new workers come on board. There was also an opportunity to discuss a new safety issue about the consumer's dog and how it could be handled when support workers visit the consumer's house.
The consumer was happy that after advocacy became involved, she felt more comfortable to openly discuss long standing issues she had with the provider. She was also satisfied with the care plan that was put in place and confident that she will receive the quality support she needs.

Supporting a disability consumer receiving care from a Maori provider

Home care disability support ~ Right 4 ~ Appropriate standards ~ Right 5 ~ Effective communication ~  Right 10 ~ Complaint ~ Maori provider

A disability consumer sought the support of an advocate because she was dissatisfied with the home care support she was receiving from a local Maori provider.

Since the consumer had moved house and her long term Kaiawhina had left a few months ago, she had several changes of workers and ongoing issues with the service. The ongoing issues included the number of hours; the quality, standard and type of service provided; as well as ongoing communication issues with the local service coordinator.

Prior to advocacy becoming involved, a resolution meeting was held to try and resolve these issues but the consumer still continued to receive an unsatisfactory service and didn't have a written copy of the care plan that was agreed to.

The consumer decided that the best way forward would be to hold a further resolution meeting with all parties present, as well as the advocate.

The focus of the meeting would be to discuss and set in place a written care plan for the consumer. This was then finalised during the resolution meeting that followed, with the advocate present. 

The provider acknowledged that the services provided to the consumer has not always been consistent with contractual requirements and not always of the highest standard. It was agreed that the care plan would be reviewed and updated regularly, and as new workers came on board. There was also an opportunity to discuss a new safety issue about the consumer's dog and how it could be handled when support workers visited the consumer's house.

The consumer was happy that after advocacy became involved, she felt more comfortable to openly discuss longstanding issues she had with the provider. She was also satisfied with the care plan that was put in place and confident that she would receive the quality support she needed.

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Hearing about independent advocacy at last

Although the complainant's son lived in a supported living environment she had had an active role in his life including monitoring his care to ensure compliance with his Lifestyle Plan.  It was not until after her son had been admitted to hospital and put on life support that she heard about the independent health and disability advocacy service. 

She advised that over a number of years she had been raising concerns and was always told by management that they would look in to her son's care but were managing it the best they could.

The advocate met with the complainant at her home to discuss her concerns. She was shown a large amount of correspondence that had gone between the mother and provider regarding the lack of care over many years. At no stage had the provider made her aware she could have an independent advocate for support and assistance. After considering the options the complainant decided a meeting would be best and asked the advocate to contact the provider to arrange this.

Prior to the meeting the complainant and met with an advocate to discuss the meeting process so she was well prepared and able to express her concerns clearly at the beginning. These included insulin not being available when needed and his flat being dirty. The complainant required gentle prompting from time to time by the advocate as due to the many incidents, she was confused about when and how these incidents had occurred. Those in attendance were the Manager of the Service, the Chief Medical Advisor, Clinical Nurse Specialist, the Business Development Advisor, the complainant and advocate.

The response from the service provider was very specific and answered many of her questions. They apologised for the state of her son's accommodation and undertook to rectify the situation.

At the conclusion of the meeting the complainant said she felt heard. She also felt there had been a decent response from the provider and that her concerns about a staff member were being dealt with appropriately through a disciplinary process. She was pleased to have had the support of an advocate throughout the process.

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Problems with Home Care

Homecare ~ Right 4 ~ Services consistent with needs ~ Right 5 ~ Effective communication

A consumer wrote to HDC about the care she receives from a private provider.

She had lost confidence in the provider whom she felt was not meeting her needs. She had also experienced communication challenges. The problems included agreed timeframes not being met, the caregiver not providing an expected time of arrival, telephone messages not being responded to and no arrangements being made for her care over holiday weekends.

The consumer felt she was not being respected and was feeling compromised and let down. When the consumer was unable to meet on a date chosen by the service coordinator because of an existing appointment, she was accused of being uncooperative. HDC referred the complaint to the advocacy service.

After talking with the advocate the consumer chose to have support to write to the provider. In her letter she stated she wanted an assurance that staff were competent, professional, co-operative, demonstrated respect and communicated effectively with consumers.

The consumer received a written apology and an acknowledgement that the service provided was not of an appropriate standard. The provider stated that ongoing education for all staff was being implemented and internal supervision, professional development and peer reviews were being put in place for the carer involved.

The consumer was very satisfied with this outcome and thanked the advocate for her assistance.

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Advocacy process empowers a consumer

Home Care - Respect & Independence - Empowerment ~ Support plan

An unhappy consumer contacted the advocacy service about aspects of the support provided to her by a home care agency.  She lived alone and received home support three times a week. Her concerns were about the behaviour of the carers as well as the agency. They included being disrespected in her own home, having her dignity and independence undermined as well as ongoing communication and information breakdowns.

After considering her options, the consumer decided (with the advocate's support) to write her own letter to the provider outlining her concerns.

As part of the response the provider offered to meet with her. Prior to the meeting, the consumer met with the advocate to formulate a plan for achieving a successful meeting outcome.

The meeting went well. The provider offered the consumer counselling and agreed that her support plan would be reviewed, with her active involvement. The consumer told the provider that she would draft a communication plan to cover areas such as respect and maintaining her independence, to be discussed when they met to review her support plan.

The consumer asked the advocate to assist her with this plan so it would be ready for the next meeting with the provider.

Once this was completed the consumer felt confident to present it to the provider on her own. She said she was ready for her file to be closed as by going through the initial advocacy process she felt empowered and confident to continue by herself.

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The importance of the right carer for effective communication

Rights 4 & 5 ~ Meeting needs ~ Effective communication ~Home-based support ~ Hindi speaker

An 86-year-old consumer with English as a second language, lived alone, was getting weaker and had some memory loss. She received very little home support and struggled to communicate due to the language barrier between her and the carers she was assigned. As a result of her concerns, the consumer's daughter made contact with the provider who supplied a new carer. The carer advised that all they would be doing was giving her medication and taking her shopping. The consumer's daughter again contacted the provider saying that she provided those services for her mother and that her mother required other care. She also asked if possible for the person allocated as her mother's carer to be a Hindi speaker to enable her mother to be able to communicate her needs.

At this point she contacted an advocate to discuss what the service could do to assist with the situation. She said she thought that her mother was being treated unfairly; and was disappointed at the lack of helpful communication between herself and the providers about her mother's care and support. After considering the options, the consumer and her daughter both asked the advocate to contact the provider on their behalf and discuss the situation as they had struggled to communicate their concerns in English.

Following a discussion with the advocate, the provider made contact with the consumer and complainant to discuss the care available and to say that they had found a carer who could speak Hindi. The consumer and complainant were very happy with this outcome.

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Difficulties in getting home support

A consumer broke his leg and was referred for home support. The home support agency said they were having difficulty finding a carer for him, and the consumer believed this to be due to their having incorrect information on his file about his lifestyle.

After discussions with an advocate he wrote to the agency expressing his concerns and requesting that incorrect information on his file be removed. He sought an apology from the agency for the way he was being treated.

The agency responded that they had nothing on file about him. He did not accept this explanation, requested a copy of his file and discovered that it did contain misinformation.

He sought further support from the advocate to organise and attend a meeting with the provider. The agency agreed to a formal letter of apology, and a cover note for the file stating that the information in it was unsubstantiated rumour.  The agency also agreed to locate a carer for him.

The consumer was very happy to have engaged the assistance of an advocate.

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Monitoring support workers

A consumer was unhappy with one of his support workers who he said was continually asking him about his personal life. As a result, he asked her to leave and advised the agency he no longer wanted to receive services from them. The consumer felt that when he contacted the support agency about dismissing the carer they should have followed up his concerns, and wanted to receive an apology from them.

At the consumer's request an advocate make contact to ascertain if his complaint had been received and when he could expect a response. Within a few days he received a written response. He told the advocate he not been reassured that the provider had taken action to ensure that the support worker did not treat someone else in same way. The consumer wrote a second letter to the provider clearly stating how this incident had affected him, and his desired outcomes.

The consumer received a further apology letter with details of actions they were taking to monitor support workers. The consumer was happy with outcome and thanked the advocate for her support.

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Meeting to discuss issues of mobility

A 55-year-old man living in a residential disability facility contacted advocacy because he had approached the staff regarding some concerns that were not being addressed, despite his repeated requests. He decided he would like to be supported in a meeting with the clinical manager, and as he had dysphasia and speech impairment, he asked if the advocate would set this up on his behalf.

The clinical manager was very willing to meet. The advocate forwarded her an agenda prior to the meeting so as she was be aware of the issues and would be prepared with the information the consumer was seeking. The consumer wanted to get more access into the community and felt that he needed a self-propelled wheelchair to make this possible. He also wanted an up-to-date assessment of his functional and active daily living abilities as he felt the staff were being over-cautions in restricting his mobility.

At the meeting the clinical manager agreed to arrange for a funding application for the chair and agreed to refer him to an occupational therapist for an assessment

The consumer was happy with the outcome of the meeting and that actions to be taken had been agreed.

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Being included in meetings regarding your own future

A consumer was unhappy he had been asked to attend an assessment meeting at short notice which did not give him any time to prepare, discuss it with staff or to have a support person present despite his request to have support.

After discussions with an advocate a meeting was organised with the management of the residential service. The following outcomes were agreed:

  • A support person will attend with the consumer at all needs assessments. Information will be provided in a timely manner allowing the consumer to prepare and discuss the material with staff or a support person.
  • A support person will be present to discuss his goals/life plan and when a meeting organised by residential services involves him. Information will be provided prior to the meeting giving the consumer opportunity to prepare.
  • If a support person is not available the meeting is to be rescheduled.   

The manager of residential services undertook to re-iterate to the consumer their agreement and commitment to these outcomes, and the consumer was happy with this.

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Clarifying the role of an advocate

A family member approached an advocate on behalf of a son who used a wheelchair. The advocate explained that she would need to speak with the son as the role of an advocate is to be on the side of the consumer. The consumer, an adult in his 20s living in his own flat had been born with his disability and has always been independent.

A visit was arranged and the key issue was found to be a need for more information about the process for obtaining a new wheelchair.

The family meeting went well and the advocate was able to clarify what an advocate can do and who they can assist.  The family spoke of frustrations because of delays, expense and the lack of information about how to get a new chair.

The advocate met with the consumer on his own. This revealed that part of the reason for the communication problem and delays was due to information going via his family as well as via a secondary provider not directly responsible for providing the chair.

The advocate contacted the key provider, on behalf of the consumer, to request he be kept up to date directly, rather than through his family.

A short time later, he was able to inform the advocate that progress had been made and communication had improved.

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Being involved in decision-making

A 43-year-old man, who had been a client of disability support services for most of his life, suffered a fall at home where he lived with his caregiver family, and was hospitalised for ten weeks. The fall resulted in spinal damage, which left him partially immobilized, requiring a wheelchair and full toileting assistance.

When his discharge from hospital was imminent, the manager of the disability service decided to send him to a facility in a different town. The man and his parents vigorously resisted this, as he had been the subject of an indecent assault in that town when he was quite young. He was adamant that he wished to return to his caregiver family where he had been happy and safe for the past 11 years.

A multidisciplinary meeting was held for the staff involved in his care at the hospital and  staff from the disability support service. The hospital psychiatrist confirmed that the man was fully competent to be involved in his care, discharge planning and decision making. It was acknowledged that the planned discharge was inappropriate and would not proceed.

The man accepted that he needed to go from the hospital to an interim facility, and would be involved in deciding on that placement. Various services worked together to expedite required home modifications, in order that the man could return to his caregiver family as quickly as possible.

The man and his family accepted an apology for being excluded from the planning process.

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Independence in decision-making

Having seen the "Tell Someone" DVD, a 27-year-old wheelchair user who lived in a residential home approached her local advocate regarding concerns which had not been resolved by self advocacy.

She was independent in attending day time activities. However, a new policy had been put in place preventing residents from going out in temperatures below 10 degrees Celsius without the use of the mobility van. The woman thought this was unfair, and told the advocate that she was able to decide for herself if the weather was too cold to be out.

The advocate helped her write a letter explaining this. The provider responded to the complaint in a manner which she found to be "a bit rude" and the consumer decided to have an advocate-supported resolution meeting. The providers agreed the woman was competent to decide whether she walked or took a mobility van. They also agreed to review the policy and check that the language used in all of their policies was mindful of residents' right to choose.

Following the meeting the woman advised that she would not have called the meeting nor had the confidence to persevere with her complaint without advocate support. She felt she was in control all the way through the process but having the advocate alongside her had made the difference.

She encourages all of her friends in residential care to speak up, and explains that there are advocates who listen to what you want and support you!

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The importance of communication

A advocate was contacted by a tetraplegic man who lived in his own home, requiring 24-hour care.

The man had issues with two separate providers. One was the home support agency contracted by ACC to provide 24-hour care, and the other was a physiotherapist. The man feared that the home support agency was going to withdraw services. He believed the physiotherapist was providing the agency with information to support the withdrawal of services and was concerned that he was going to be forced into rest home care.

The advocate listened to his concerns and explored options to assist him to resolve them. As a result of this discussion, the man arranged a meeting with the providers and accepted the advocate's offer of support at the meeting.

At the meeting the man was able to articulate his concerns about the care he was receiving and the providers advised him of the expectations and protocols required of them as providers. The man was assured of ongoing services and support and was happy with the outcome of the meeting.

He later contacted the advocate to advise of a further issue that had arisen with another provider that he had been able to successfully resolve himself.

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Improving home support services

A woman with a physical disability asked advocacy for assistance to get the support she needed. She felt that her service provider did not listen to her, and did not follow up on her requests to arrange alternative support workers when her regular support worker was not available. She said there had been a breakdown in communication with co-ordinators, including a lack of access to her care rosters. She had attempted to resolve these issues directly, but the same issues had arisen again.

The woman chose to have a meeting with the provider to discuss her issues in detail, with advocacy support. The provider apologised for the ongoing stress caused, agreed to send her a copy of the care roster every week and said that a regular "back up" support worker would be assigned to her. They also agreed that her preferred support worker would be asked if she was available to provide back-up support on the roster. The provider further acknowledged that the woman would be advised of any changes which impacted on her as soon as possible and that a plan would be put in place to cover changes to the roster.

The woman advised that she felt the meeting had gone well, and that real change was possible as a result of positive communication. She later said that having advocate support made her feel more confident to discuss her issues with the provider, and that things had gone better for her since the meeting.

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Correcting misleading information impacting on home support and independence

The mother of a child who required home support wanted to take a more active role in her daughter's care. In addition to the care worker not always turning up on time she was concerned that the care worker was not encouraging her daughter to be independent as she was doing everything for her. When the mother discussed this with the care worker, the care worker became upset as it meant her hours would be reduced. The mother believed that following this discussion, the care worker provided her employer with incorrect information which was then put on the child's file.

After an advocate outlined the options she could take, the mother opted to meet with the provider to discuss her concerns.

At the meeting, each of the concerns was discussed in full. The provider apologised for the distress caused and advised that an internal enquiry had commenced to look at the performance of the care worker. She was given an assurance that they would take action to address any issues uncovered as a result of the enquiry. The provider also acknowledged the incorrect information on her daughter's file, and agreed to either amend it or place a statement of correction on the file.

Following the meeting the mother advised that she had found that being proactive and making the provider accountable had been uplifting. She later advised that all the agreed actions had been carried out.

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Making a really big difference

Mobility taxi ~ Restraint ~ Fall ~ Injury ~ Disability ~ LTSA ~ Wheelchair

A woman who uses the mobility taxi service approached an advocate for support to make a complaint following an accident in a mobility van. The driver of the mobility van had strapped her wheelchair in to the van. However, the wheelchair was not securely strapped and she herself was not restrained in any way. When the driver braked hard, she fell out of the wheelchair and the wheelchair also fell forward. She sustained a broken finger on the only hand she is able to use.

The advocate assisted her to take the matter to the provider of the service. The taxi service agreed to put a policy in place to ensure all wheelchairs and their occupants were properly secured. As the complaint involved the mobility taxi service they were required to notify LTSA. A representative of LTSA met with the consumer and the advocate where it was discovered that there was no policy about restraint of wheelchairs or their occupants. A Regional Council meeting with the Total Mobility Advisory group was organized to look specifically at the development of a policy for the use of lap belts or other devices to ensure the safety of consumers in wheelchairs who use mobility taxis. Once this has been developed LTSA will look at implementing it nationally.

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Independence and decision-making

Speaking up ~ Independence ~ Family carers ~ 24 hour care ~ Decisions

A young man with cerebral palsy and a significant disability requiring 24-hour care sought the assistance of an advocate to deal with concerns about the care provided by family carers and their attitude towards him.

The advocate had several meetings with him to explore ideas of how he might go about raising his concerns with his family.  This was a difficult situation for him as he wanted to leave the family home and live independently.  He felt his family were very over protective.

During visits to discuss how his concerns could be resolved, the advocate coached him on his rights and how he could exercise them.  The advocate reiterated her support of him in the actions he might take to resolve the situation and encouraged him to identify and utilise other support people and agencies.  This included his Case Support Worker who provided daily support and arranged counselling to help him with his plans and self confidence.

Eventually he felt able to meet with his family and others involved with his care to discuss his issues and concerns.  The advocate attended to support him. He was successfully able to articulate his concerns and aspirations and consequently left the family home to live independently.

Although the advocate has continued to provide support and information on issues that arise for him with new caregivers and provider organisations; his confidence and ability to self advocate and exercise his rights is very noticeable.

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Accommodating the needs of people with disabilities

Twenty-four-hour care ~ Home-based care ~ Rest-home trial ~ Care management plan ~ Independence ~ Appropriate care ~ Rights 3, 4

A woman who had been bedridden since an accident many years ago sought the assistance of an advocate. In this time, she had managed to remain independent in her own home with support provided by ACC. This required the assistance of carers on a 24-hour around-the-clock basis.

The woman wanted the advocate to assist her with various issues arising from problems with carers, and to support her in making decisions for the future. She had used a local rest home for respite care and appreciated always being able to have a particular room that she liked. She wondered whether it was time to look at rest-home care on a permanent basis, and whether she would be able to go to the same rest home and have her favourite room.

At her request, the advocate arranged for the manager of the rest home to come to talk to her. The manager was able to assure the woman that she could have "her room", and a trial period was agreed to, with weekly meetings to discuss any issues. The manager worked with the woman to develop a plan to assist her to adjust to the change in staff as well as to her new living arrangements. Her general practitioner was also supportive of the steps to be taken.

All went well for a while, but the woman gradually lost confidence in the rest home following several incidents, and she became increasingly unhappy. The advocate kept in contact with her to ensure each issue was sorted out as it arose.

Eventually the woman decided to discharge herself back to her own flat, which she had kept on for a period in case things did not work out.

The staff of the rest home are happy to have her back if she changes her mind. The woman found it helpful to discuss with the advocate how important it was to have tried the rest home, but that she had discovered from the trial that that care option was not for her. She preferred to have her own carer and for things to be done exactly as she wanted.

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