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Disability (physical)

Using what she says in confidence against her

Promoting independence with a stand-in-hoist

Residential Care Bullying

Fighting for the right to dignity and independence

Plan makes family responsible for daughter's care

Access to a self propelled wheel chair

Needing more community contact

Residential visits make access to an advocate easy for residents

Dealing with a poor memory

Complaint on behalf of consumer with complex disability

Meeting to discuss issues of mobility

Using alternative forms of communication with consumers who are non-verbal

Using what she says in confidence against her

Residential ~ Right 2 ~ bullied ~ Right 5 ~ effective communication

A consumer contacted an advocate because she felt that some staff were using what she said in confidence against her. She requested advocacy support to get confirmation she could freely raise an awareness of the concerns she wished to raise with the manager. 

Goals:  

1.   Communication - felt that she couldn't talk freely with the providers

2.   Felt she was being bullied and as a result was becoming isolated

The consumer wanted to meet with the manager to discuss her concerns about communication so she felt free to speak and that her confidentiality would be maintained. She sought the following:  

• An assurance that staff would accept her preferred dinner days
• That staff would listen to her concerns and act on them
• That anonymity and confidentiality would always be upheld.

At the meeting between the consumer and the manager it was agreed staff would be made aware of the consumer's choice to sleep in and that if the consumer raised any concerns where appropriate the manager would feed directly back to her. The consumer was very happy with the outcome.

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Promoting independence with a stand-in-hoist

Residential facility ~ Right 3 ~ dignity & independence ~ multiple sclerosis (MS)

The consumer lives in a residential facility because he has multiple sclerosis (MS). He still has muscle strength in his legs and can weight bear. He has also been using a standing hoist to maintain this strength.

As a result of a caregiver placing him incorrectly in the hoist he fell and the home reacted by refusing to allow him to use the hoist any more as it was a health and safety risk. The hoist was removed without further discussion. 

The consumer contacted the advocate as he was devastated by the decision. To him, the hoist represented his independence. He said he had tried talking to the manager and area manager but the providers were standing by their decision. The advocate arranged to meet the consumer to discuss his concerns as well as the options for resolution. 

After speaking with the advocate the consumer decided to have a letter written, in his own words, to the area manager. His letter stated what his concerns were, his desired outcome and a request to meet with him and his advocate to discuss the matter.

The issues to be addressed were as follows:

• The consumer wanted to be able to continue to use his stand-in hoist to keep the strength in his legs. He felt his rights had not been respected under the Code of Rights. He said he had not been included in the decision making process and had not been offered any alternative.
• To be fully informed about why he could no longer use the stand-in-hoist
• To receive a second opinion about the use of his stand-in hoist  

The meeting was attended by the area manager, the consumer and his advocate. The consumer outlined his concerns and requested the following: 

• A completely independent decision on the safety of the stand-in-hoist
• A totally independent occupational therapist (OT) assessment from someone outside the DHB
• For the manufacturers to be contacted to find out the safety recommendations
• For his case to be reviewed and the stand-in-hoist to be used again in his daily living 

The area manager agreed to:

• Employ a private OT to provide a second opinion
• Look at what options would be available if the consumer was unable to have his hoist 
• Get the manufactures involved in the safety aspects
• Ensure the consumer is part of the process and is kept informed of any developments

The advocate agreed to follow up with the consumer to make sure the agreed actions had taken place. When contacted, the consumer advised the OT was very good and very professional. She did an assessment observing the consumer at different times of the day using the hoist, and wrote a full report.

As a result of her report the stand-in hoist was reinstated. All staff were trained by the OT in the use of the hoist.

The manufacturers of the hoist visited the facility and showed the consumer other models he may like to consider.

The consumer requested that the original OT who called the stand-in-hoist a safety hazard did not have any part in his care or in future assessments.

The consumer was delighted with the result of his complaint. "I think I've had a very good outcome from all of this, thanks to you. So, in answer to your question, yes please, close the file on this one. I have achieved, or rather, WE have achieved all we set out to achieve. 

Thanks again, I was lost without your help. With your assistance people listen and things get done".

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Residential Care Bullying

Right 1 ~ respect ~ Right 2 ~ harassment ~ cerebral palsy ~ Right 10 ~ complaint process

The consumer described himself as being dependent on the staff to assist him with his daily needs because he had limited use of his limbs due to cerebral palsy.

He said that over a twelve month period he had been bullied and threatened by one staff member so much that he had begun wetting and defecating himself. He said the staff member had told him not to tell anyone, including his counsellor or he would be called a liar and she would make sure that he was thrown out of the residential home. The bullying behaviour included being sent to his room whenever the staff member came on duty, talking over him if he tried to voice an opinion, telling him to "get that true and correct, otherwise you are a liar" and stating that he knew nothing and she was a health professional. 

The consumer relayed an issue he had attempted to address with the house supervisor about being served dinner at 3:30pm. Initially the meal time changed but when it reverted back to the earlier time this reinforced the consumer's perception that he was powerless to make changes and he had no confidence in the management. 

By the time the family contacted the advocate they had already made a complaint to the manager of the service and the staff member had been moved to another residential home.

During the initial meeting with the advocate, the consumer asked for assistance to write a letter to the management which outlined his concerns and his request for a resolution meeting to occur. In his letter, the consumer briefly outlined his experience and asked management what their screening process was for staff, what training they had in place for staff, and how they intended to keep consumers safe.

The consumer also advised the management of the poor follow-up to his complaint regarding meal times and how this had discouraged him from telling staff about the bullying. The consumer said he wanted to feel safe and that he also wanted a safe complaints process. 

The meeting was attended by the manager, the newly appointed head of residential care, the consumer, his brother and the advocate. At the beginning of the meeting the group was reminded that the meeting was the consumer's opportunity to voice his concerns and for the management to be able to respond to his questions. The management listened to the consumer and then offered the following feedback:

• The staff member who had bullied the consumer had been dismissed.
• The organisation had established a position for a Human Resources Manager who would have the responsibility of ensuring that appropriate staff were hired. 
• The complaints procedure had been altered so that all complaints would be sent to the Head of Residential Care for proper follow up, including checking back with consumers. 
• Consumers would be provided with the opportunity to have involvement in staff assessments. The feedback process would be confidential and would ensure that the anonymity of the consumer offering feedback would be maintained. 
• A new care review process was to be implemented to ensure that appropriate levels of care were being offered to consumers by staff and that consumers were to be encouraged to have a say in their own care plan.

• A new staff training schedule was to be developed and implemented. 
• The management also supported the consumer's request that the advocate be able to visit with the consumers once a month as part of a self-advocacy training programme. 

The consumer advised that for him the outcome of the meeting was very positive. He felt safer in his home and more respected as an individual. He appeared to continue to grow in confidence and participated enthusiastically in the first self advocacy training.

The management also agreed for the advocate to provide in-house training for the staff which would include a focus on the complaints process. 

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Fighting for the right to dignity and independence

Right 3 - Right to Dignity & Independence ~ Significant physical disability ~ Controlling support worker

A young man with a significant physical disability contacted an advocate with concerns that one of his support workers had become, to use his words, "controlling". "I am sick of it and I want my own life", he said.

The young man said that the behaviour of the worker was leaving him feeling scared. He said that even when he had moved to a different residence the support worker had insisted that he continue providing some support claiming the consumer would miss him. The consumer was adamant that he wanted this worker out of his life and felt the support worker was even influencing his family about decisions relating to his care.

The advocate met with him at his home. He had several of his workers who had been trying their best to support him but had found it difficult as it involved a fellow colleague. At the end of the meeting, the man decided he wanted support in meeting with the service's regional manager to ask him to stop this worker being involved in his care.

A week after talking it through with the regional manager, the consumer was given reassurance that the worker would no longer have contact with him of any kind. At the manager's suggestion, it was agreed that everyone attending that meeting get together in a couple of months to review the situation to ensure the consumer was happy with the outcome.

This was a wonderful example of a consumer who had learned about his rights, knew where to go for help and was able to speak up for himself with support. It was also a credit to his other support workers and regional manager for their insistence on valuing the consumer's right to live his own life.

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Plan makes family responsible for daughter's care

Residential disability home ~ Right 4 ~ Appropriate standards ~ Care plan

A mother contacted the service relating to issues with her disabled daughter's care. Her daughter lived in a residential home and had complex health issues. She had been sent to hospital in an ambulance without an escort. Her family members were not able to attend.

There were several meetings with the providers to make up a new care plan. The family believed that as their daughter was receiving 24-hour funding, that a person could be called on to go with her to hospital if necessary. 

The plan was drawn up several times with the family being made responsible to care for their daughter in an emergency as the service provider informed them they did not receive funding to call on a staff member to go to hospital with the residents.

The plans were not signed and the mother was not satisfied with the outcome. 

The advocate spoke with the daughter and arranged another meeting with the provider. The specific issues were discussed and an agreement was made for a new care plan to be drawn up. This stated that the daughter would have a grab and go bag ready to take to the hospital with her. This would contain her care plan, toiletries, equipment and medication. The staff would contact the clinical person  on call to discuss issues in an emergency or if they had any queries relating to the daughters health.

Both mother and daughter were pleased with this outcome.  

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Access to a self propelled wheel chair

Residential Facility ~ Physical disability ~ Right 3 ~ Dignity and Independence

A 55-year-old man living in a residential facility contacted advocacy because he had approached the staff regarding some concerns that were not being addressed, despite his repeated requests. The advocate had worked with this gentleman on a number of occasions and he was very familiar with the complaints process.

The man decided he would like to be supported in a meeting with the Clinical Manager to get his issues addressed. The man had dysphasia and a speech impairment and asked if the advocate would contact the Clinical Manager on his behalf to set up the meeting.

The Clinical Manager was very willing to meet and scheduled a meeting within a fortnight; she also agreed to take some meeting notes. The advocate forwarded her an agenda prior to the meeting so as she could be aware of the issues, and prepared to provide the consumer with the information he was seeking. Among other things, the consumer wanted to get more access into the community and felt that he needed a self propelled wheelchair to make this possible. The consumer also wanted an up to date assessment regarding his functional and active daily living abilities as he felt the staff were being over cautious in restricting his mobility.

At the meeting the Clinical Manager agreed to arrange for an application for funding for the chair to be made to the Ministry of Health, and also agreed to refer the consumer to an Occupational Therapist of the DHB Community Team who would come to the facility to assess him. 

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

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Needing more community contact

Residential disability facility ~ Right 3 ~ Independence ~ Right 5 ~ Effective communication ~ Dysphasia ~ Speech impairment ~ Occupational therapist ~ Wheelchair user

A resident with dysphasia and a speech impairment who had previously been supported by an advocate approached the advocacy service again after first attempting to address his concerns directly with the provider. He decided he would like to be supported at a meeting with the Clinical Manager to get his issues addressed and asked the advocate to set up the meeting on his behalf.

The Clinical Manager was very willing to meet and scheduled a meeting within a fortnight. The advocate forwarded her an agenda prior to the meeting so she would be aware of the issues and would be prepared to provide the resident with the information he was seeking. Among other things, the resident wanted to get more access into the community and felt that he needed a self-propelled wheelchair to make this possible.

At the meeting the Clinical Manager agreed to arrange for an application for funding to be made to the Ministry of Health.

The resident also wanted an up-to-date assessment regarding his functional and active daily living abilities as he felt the staff were being over cautious in restricting his mobility. The Clinical Manager agreed to refer the consumer to an occupational therapist from the DHB Community Team who would come to the facility to assess him. 

The resident was happy that the meeting had resulted in some firm actions to be taken.

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Residential visits make access to an advocate easy for residents

Networking ~ Residential visits ~ Vulnerable people

A new residential service had been added to an advocate's list to visit. The advocate contacted the Manager by phone to introduce himself. He told the manager about the role of an advocate and the purpose of residential visits to make access to an advocate easy for the residents. A date to meet was agreed.

When he arrived there were three managers waiting to meet him. He quickly established that they were apprehensive about the nature of the visits. He was able to put them at ease very quickly by explaining how the residents would find it very difficult and in most cases impossible to contact an advocate.

As the advocacy service has a mandate to be available to all consumers of health and disability services it is appropriate for advocates to be pro-active and go to those who are not able to come to them.

This explanation reassured the managers. They then took up the offer of free advocacy education sessions for both consumers and staff.

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Dealing with a poor memory

Residential Physical ~ Right 5 ~ Effective communication

During a network visit to a residential home, an advocate was approached by one of the residents who had concerns about how information was being communicated to them. The person suffered from a brain injury which had left him with very little memory recall. The person often became confused and did not understand how they come to be at the home and how long they would have to stay there.

The advocate and resident discussed the option of speaking with the nurse manager to organise a meeting where a request could be made for a written statement about why the resident was at the home. This would then be available for the resident to refer to on an ongoing basis.

At the meeting the nurse manager thought this was a good idea and suggested that the statement be kept at the front of a daily diary where the consumer and staff could record what activities the resident had been involved in. In this way the resident could refresh their memory of what they had been involved in on a day-to-day basis. The resident was very happy with this plan which has worked very well.

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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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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-cautious 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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Using alternative forms of communication with consumers who are non-verbal

I have been supporting a young consumer who has progressive multiple sclerosis and is non verbal. He communicates by using a communication board with some pictures and phrases.  His physical disability means he cannot always use his communication board as when he is tired communication becomes much more difficult for him.  I will usually arrange a visit in the morning, when he is less tired and better able to communicate.

I was delighted to be able to utilise my Makaton skills in working with this consumer so I was able to support him to clarify his main issues and his desired outcome.

I assisted this young man to write a letter to his GP, requesting more information about his choices and stating some of the concerns he had regarding his diagnosis.