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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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Specific communication needs

A woman with a hearing impairment had an outpatient appointment at her local hospital which she needed to postpone. Because of her hearing impairment she was unable to use a telephone. The appointment letter only supplied a phone number, so she looked in the phone book and used the hospital's multi-purpose fax number to notify them that she could not attend the appointment.

The woman wrote to the CEO pointing out that deaf people are disadvantaged by communication such as this. She received a letter from the outpatient department advising that they intended to include a fax number on all their appointment letters in the future, and advised her that if she experienced any similar communication difficulties in the future she should contact one of four named people. Unfortunately, only the phone numbers of the people had been provided.

The woman asked the advocacy service to contact the hospital to check that the fax number was operational, and to reiterate that phone numbers were of no use to someone who could not use a telephone.

The provider advised the multi-purpose fax was still operational, and that a further letter was being sent to the woman apologising for the error and advising that a systemic change would be made within the organisation ensuring that fax numbers would be included on all written information.

The woman received the letter from the provider and that was happy with the outcome.

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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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Involvement in annual review process

A disabled consumer wanted to know why neither he nor his caregiver had been consulted in his annual review process. He queried why after a hospital admission his allocated hours on discharge were initially reduced and only reinstated when he questioned this decision. His attempt to address his concerns via his support agency had not been responded to.

After discussion with an advocate the consumer requested support to put his concerns in writing, seeking an explanation, an apology and acknowledgement that urgent reassessment of his care might be required. In his letter he requested a meeting with the providers, his caregiver and advocate.

His request for a meeting was acted on and as a result he received an immediate increase in carer hours in acknowledgement that his care needs had increased. They were unable to explain why his hours following hospital discharge had been cut, as the facilitator in charge had left their employment.

He received a letter of apology which detailed that when his twelve-month review was undertaken he and his carer would be consulted, that additional hours would be required due to the degenerative nature of his condition and that staff would have refresher training on following review process policies and appropriate contact with clients of the Support Service provider. The consumer was extremely happy with the outcome.

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Lack of information delays surgery

A man with cerebral palsy cancelled major surgery the day before it was due, as he felt he had insufficient information about the procedure and his post-operative care. He discussed his concerns with a provider who referred him to advocacy.

They discussed the advocacy process and the man clarified his concerns. They wrote directly to the specialist outlining the man's concerns, and asked whether:

the surgery would be performed by the specialist himself
a different surgical approach could be taken
the man would have the opportunity to meet with the anaesthetist before the operation to discuss anaesthetic options
the plan for post-operative care had been tailored to meet his needs taking disability into account.

While awaiting a response, the advocate contacted the hospital to check that the man remained on the surgical waiting list despite his cancelling the surgery. The advocate also contacted the local assessment agency to determine the man's entitlement to home support services. Both agencies responded positively which allayed some of the man's apprehension.

The specialist wrote back advising that the surgery should be performed without undue delay, and that he had made an urgent referral to the anaesthetist requesting the man be assessed and provided with the opportunity to discuss his concerns relating to anaesthesia. The specialist offered a meeting between himself, the man and the advocate to discuss the actual surgery and post-operative care.

The consumer took up the offer of the meeting and the advocate attended as his support person to ensure that he was able to communicate his concerns and receive sufficient information to enable him to make an informed choice about proceeding. At the end of the meeting he was very satisfied with the information given and gave the specialist the "go ahead" to schedule a date for the surgery.

The man later contacted the advocate advising the surgery and post-operative period were uneventful with his needs being met every step of the way.

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Make it "click"

A woman contacted advocacy stating that she had fractured her finger which required plating following a fall from her wheelchair whilst in a mobility van that braked at an intersection.

LTSA had been notified by the taxi company of advocacy involvement as they were worried that they were liable for the injury. The LTSA representative wanted to meet with the woman and the advocate. During the meeting it became apparent that there is no law in NZ that requires a person being transported in a mobility van to be firmly secured.

The taxi company now has a policy in place for the safe transport of a person who uses a wheelchair. Although no law currently exists in NZ for this, other taxi companies are going to adopt this policy as well.

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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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Wanting an ordinary life

A 59-year-old man living in a residential disability home was being pressured by both staff and family over his relationship with another resident. The man was unable to speak up and give his own opinion, and was known to say what he knew the family or staff wanted him to say.

The family did not like his choice of girlfriend and were trying to make him choose between them and her. They were also putting pressure on the provider to transfer him to another community home. The staff, on the other hand, were encouraging the couple to sleep together and discuss marriage.

The advocate was able to form a good rapport with the consumer and establish that while his girlfriend was important to him, she was only a friend and that he had difficulty saying no to her and asking her to leave his room. He was adamant that he didn't want to share his bed with her all the time. On the other hand, he wanted his family to respect his girlfriend and not put pressure on him.

He had a week's trial at another community home but was not happy to stay there and returned on the fifth day. With the support of the advocate, he met with staff and members of his family and was able to say exactly what he wanted. The outcome included a notice being put on his door which indicated if he was happy for his girlfriend to enter or not. Staff agreed to support him with monitoring this. The family agreed to include his girlfriend on outings. They all agreed to drop the pressure on him and let the relationship develop on its own. Relationship counselling was another option the provider was encouraged to consider for the couple.

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Empowering carers to advocate more effectively

A woman who supported a man who had a physical and intellectual disability contacted advocacy with written authorisation from the man to speak about his situation. His overall needs were complex, and he lived at home with a number of support services including personal care and domestic assistance. He had ongoing concerns that his quality of care was being compromised by inconsistency of care and an unavailability of carers. He had recently had a fall that resulted in hospitalisation. He wanted to return home but the hospital clinicians were not keen on this.

The support person used advocacy to clarify her questions and to gain encouragement to ask them. She wanted to know what was required in the needs assessment process before changes in disability support services could occur, how needs are determined in the assessment process and who ultimately decides what the needs of the person with the disability are. She also wanted to know how clinical recommendations fit into the assessment process and how other non-hospital clinical opinions could be included.

The second issue was the man's long-term concern about having more direct choice in caregivers. It was suggested that she ask about all available funding possibilities including any discretionary funding.

Ultimately, there was a further review by a needs assessor. The disabled man signed the assessment, agreeing to the needs identified. The support person supported the man through the needs assessment process and found out about individualised funding which allowed more autonomy regarding funding including direct hiring of staff.

The man continues to live at home and is now able to choose the people he wants to care for him through an individualised funding package.

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Services provided by care worker

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

The mother opted to meet with the provider to discuss her concerns, each of which were discussed in full. The provider apologised for the distress caused, and advised there had been an internal enquiry to look at the performance of the care worker. They would take action to address any issues uncovered as a result of that enquiry. They acknowledged the mother's concerns regarding 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 felt taking a proactive course of action and making the provider accountable had been uplifting. She later advised that all the agreed actions had been carried out.

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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 arranged 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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Assistance with move to alternative accommodation

A woman with an intellectual disability, resident in a disability facility, met with the provider who agreed to assist her to transition from secure care to residential care, as she no longer required secure care. When this did not eventuate, the consumer asked an advocate to assist with arranging another meeting with the provider.

At the meeting the consumer articulated her frustrations. The manager apologised and explained that they had been so far been unable to find suitable accommodation, and that finding the right accommodation for the consumer had presented some challenges. They were exploring the possibility of building the consumer a flat with separate access, at the back of her current accommodation.

They agreed to meet every six-weekly to discuss progress until alternative accommodation was found. The consumer was happy with the outcome of the meeting.

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Poor Communication and support from the NASC

The family of a consumer with cognitive deficits contacted advocacy for assistance. The consumer lived with his extended family, and as he tended to make poor social choices, his family had legal guardianship. Despite frequent calls by members of the family to the local NASC (Needs Assessment and Service Co-ordination service) they got no response and as a result the consumer and his family received very little support.

The family tried to cope with very little support but became so 'worn out' they sought the help of their local advocate to meet with staff of the NASC agency.

Their complaint highlighted the following issues:

Poor communication from NASC.
Lack of information about disability support options.
Lack of timeframe for supports to be commenced as well as a lack of follow-up to ensure they were in place.

At the meeting, support options and outcomes were discussed. Although the NASC staff agreed to keep the family informed, the advocate had to chase them up on a regular basis to make sure information was provided and appropriate disability supports were put in place to ease the stress for the family.

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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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Complaint on behalf of consumer with complex disability

Residential Care ~ Complex disability ~ Medication ~ Appropriate standards

An advocate was contacted by the mother of a consumer. The consumer has high needs, is non-verbal and is fully dependant on the staff of the residential home she lives in. The mother expressed concern that her daughter had been admitted to hospital as a result of not receiving medication that prevents muscle spasm and grand mal seizures, and that this was not the first time she had been admitted as a result of her failing to receive the prescribed medication.

After initial discussions with the advocate, the complainant said she felt empowered enough to manage the complaint process without further advocacy support. The advocate followed up on the complainant's progress with her complaint, and was advised she had not yet received a response from the provider. After further discussion the complainant requested the advocate assist her to organise a meeting. Upon contacting the provider it was decided that the meeting would be held the following day as the new area manager would be in town.

The complainant, supported by the advocate, was able to address her concerns about the medication as well as discussing her additional concerns about not being notified of serious issues affecting her daughter. She also wanted to know what the evacuation plan was for her daughter and how staff were assessed and trained to provide safe care for her.

As a result of the meeting, the complainant was able to receive feedback in respect of her medication concerns, and the manager also agreed to:

educate staff on the purpose and function of the consumer's medication
check the seizure protocol to ensure it was correct and that staff knew what to do
follow up and feed back to the complainant the outcome of the consumer's recent x-rays
determine the process for staff notifying/contacting the complainant when there are events, issues etc regarding her daughter
provide a copy of the consumer's annual personal care plan to the complainant
check the evacuation plan.

The complainant felt it was a positive outcome. She believed that by having her concerns addressed, the overall standard of care would improve for all residents.

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Communication problems with a needs assessment agency

NASC agency ~ Needs assessment ~ Effective communication ~ Timely response ~ Self-advocacy

A mother contacted the advocacy service as her request to the local needs assessment agency had not been acted on. She had asked for an assessment for her younger son and an update on support services for her older son. Despite making these requests on a number of occasions, there had been no response and the information had not been provided.

She stated she wanted clear and honest responses from the NASC agency with communication and support provided in a timely manner.

After discussing her complaint with an advocate, she wrote to the NASC agency outlining her complaint and asking for a meeting with a manager to discuss her concerns and a way forward. Although she used the advocate to prepare for the meeting, she had other support available at the meeting and felt able to advocate on behalf of her sons.

At the meeting, the NASC manager personally undertook to ensure that appropriate service provision was in place for the two children and that all future communication with the family would be open, honest and timely.

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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.

aAlthough 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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Disability

The importance of communication

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