National Advocacy Service for People with Disabilities Annual Report 2012 1.

Introduction

The National Advocacy Service for People with Disabilities was established by the Citizens Information Board (CIB) in January 2011. The Citizens Information Board provides independent information, advice and advocacy on public and social services through www.citizensinformation.ie, the Citizens Information Phone Service and the network of Citizens Information Services. It is also responsible for the Money Advice and Budgeting Service. Under the Citizens Information Act 2007 the Citizens Information Board has a mandate to provide advocacy for people with disabilities. Advocacy is a means of empowering people by supporting them to assert their views and claim their entitlements and where necessary representing and negotiating on their behalf. Advocates may support or represent clients at para-legal tribunals but not in courts of law. Between 2005 and 2010 CIB developed and funded a pilot programme of 46 advocacy projects for people with disabilities in the Community and Voluntary sector. An evaluation, carried out by Pathfinders and Round Table Mediation and Training attested the worth of this programme and the outcomes achieved for people with disabilities and recommended a new national structure. The National Advocacy Service for People with Disabilities (NAS) was launched by Minister Joan Burton TD on March 31st 2011. The service is managed by five Citizens Information Services in Dublin (Clondalkin), Westmeath, Offaly, Waterford and Leitrim and staffed by five Managers, 35 advocates (FTE) and five administrators. During 2012 NAS continued the process of establishing its role as an independent voice for vulnerable, isolated people with disabilities. Across the five regions NAS advocates promoted the service at community level and negotiated access to people with disabilities in residential institutions across the disability spectrum, physical, intellectual, people with mental health difficulties, people with acquired brain injury and people on the autism spectrum.

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NAS and CIB have met with and built relationships with key stakeholders at local and national level and worked to build the skills and experience of staff while improving and developing the structures, policies and procedures to support a high quality service.

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Statistics January to December 2012

Statistics are collated from www.advocacycase.ie. This is the electronic case management

system developed to support case work in the National Advocacy Service and in CISs. It provides a tool for case management which allows for consistency of approach, case review and safe storage and retention of files. 2. 1

Numbers of Clients and Cases.

The Electronic Case Management Programme report for NAS from January to December 2012 showed the following: NAS client statistics by year on Books at Start of Period Total NAS clients for year New Cases Closed Cases Initial Interview Waitlist Average clients per advocate (35)

2011 206 856 650 291 748 34 23

2012 % change 573 1068 495 411 872 20 31

178% 25% -24% 41% 17% -41%

The table shows 495 cases opened since January 2012 along with 573 cases on the books at the start of the year. Total client numbers are up 25% at 1068. The average number of clients per advocate for the year stands at 31, also a rise of about one third. The proportion of closed to total cases is 38%. Considerably more cases were carried over in 2012 and as would be expected, there were fewer new cases (down almost a quarter). These figures point to the long duration of many cases.

Six month numbers 2012 Clients on Books at Start of Period Total Client Numbers

Jan-Jun 2012 573 841

Jul-Dec 2012 645 872

Change 12% 4%

New Cases Closed Cases Initial Interviews with Clients

268 196 477

228 215 395

-15% 10% -17%

When the six month figures (Jul-Dec) are compared with those of the June six monthly report, the second six months shows a 4% increase in client numbers. The proportion of closed to total cases was 23% in the first six months and 25% in the second. However, the number of clients on the books at the start of the period had risen by 12%, pointing again to the increased duration of cases and new cases are down by 15% 2

2.2

Total New Clients per region were as follows:

Total Client Numbers by Region Region 1

2011

2012 Change

172

208

21%

Region 2 Region 3

123 187

176 223

43% 19%

Region 4

146

187

28%

Region 5

222

271

22%

2012 Region 1 Region 2 Region 3 Region 4 Region 5 Overall

As % of NAS Average number of clients per total advocate 19% 30 16% 30 21% 38 18% 27 25% 34 31

Client nos. 208 176 225 187 272 1068

Please note: averages do not allow for illness and absence among some regions’ advocates.

Counties with the highest numbers of clients were Dublin, Cork, Kilkenny and Galway. Those with the smallest numbers were Cavan and Laois. 2.3

Type of Client

client type clients with Intellectual /Learning disability clients with Physical & Sensory disability clients on Autistic spectrum clients with Mental Health difficulties clients with Acquired Brain Injury

All NAS

R1

R2

R3

R4

R5

29%

32%

32%

32%

33%

26%

32% 5%

23% 11%

30% 3%

35% 6%

35% 8%

33% 4%

19%

20%

20

16%

16%

23%

9%

11%

4%

8%

9 12%

Categories with small numbers not included. Some categories have been amalgamated.

The major category served was people with physical and sensory disability, followed by those with intellectual and learning disability.

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2.4

Type of Advocacy support

Preparation & research Negotiation Accompaniment to formal review meeting/case conference Self-advocacy support Assistance with review or meeting

17% 18% 18% 15% 17%

In this report issues are divided into two sections with Quality of Life issues listed separately. Most common case issues excluding quality of life: Health Housing Social Welfare Justice Family relationships Education/Training Childcare related court case

23% 23% 19% 11% 5% 5% 2%

Categories with small numbers not included

The childcare-related Court cases which have absorbed much advocacy time represent only 2% of issues. 2.5 Number of Issues Sixty per cent of cases had 2-7 issues, illustrating their complexity. About 11% had more than 8 issues while 29% reported a single issue. 2.6

Method of Referral

Twenty per cent of clients referred themselves to NAS while 36% were referred by a service or a health professional and 12% by family or friends. CISs and CIPS accounted for seven per cent of referrals and nine per cent were referred by a disability group Referral Self Service /health professional Family/friend Disability Group CIS & CIPS

Jan Dec 2012 20% 36% 12% 9% 7%

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3.

Reaching more vulnerable people with disabilities

The primary target group for NAS is more vulnerable people with disabilities. The aim of the service is to ensure that the voices of people with disabilities are heard and their rights safeguarded. The Service has a particular remit for people with disabilities who are isolated from their community and services, have communication differences, are inappropriately accommodated, live in residential services, attend day services and have limited informal or natural supports. CIB aims to continually strengthen the mainstream services so that people with disabilities who are able to advocate for themselves with assistance, can, where possible, use their local Citizens Information Service as this will work towards their inclusion in “ordinary” life. NAS has continued to make inroads into residential services for people with disabilities and appropriate referrals are being received by service providers. However it is noted that to reach the most vulnerable people who do not have the ability to self-refer and who may not have family or other informal supports NAS is dependent on the service providers and staff to make a referral. While many services are engaging very positively with NAS advocates there is still a lack of understanding of advocacy in some services and a level of resistance at times. The very nature of institutional living suggests that there may be quality of life issues that impact on people who reside in such services. The existence of rights committees may address some of these issues, but as an internal process it does not provide the independence that NAS offers. While there are many good examples of services trying to implement Person Centred Plan’s (PCPs) appropriately, in some instances advocates have noted that PCPs are not being adhered to. In these cases advocates have found it difficult to find evidence of implementation or outcomes achieved for people on the basis of their PCPs when enquiring on behalf of a person with disability and/or their family. Reaching those who are disconnected from services within the community remains a challenge and during 2012 NAS has begun to make contact with primary health care teams and voluntary organisations which would be aware of isolated people with disabilities in their communities. These have included; Family Resource Centres, G.Ps, religious leaders, mental health teams, St Vincent de Paul and homeless services - all of whom may have access or knowledge of those most disconnected. During 2012 CIS boards became more aware of the safeguarding role of advocates and the challenges of this role. Advocates questioned when they could safely close a case where agreed advocacy issues were addressed, but when the client’s circumstances may not have changed greatly and there may still be risks to their welfare. Other advocates questioned their role in a residential institution where they are representing a particular person but note evidence of apparent neglect among other residents. A vulnerable adults’ policy and parallel procedures have been developed during the year with the aim to support advocates in this situation.

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In this case a service provider used Guardianship as a means to restrict access to advocacy. In this instance an advocate was working with a person who communicates differently on a particular issue. The advocate became aware of practices, put in place by the service, which were restricting the person’s access to community participation. The service provider informed the advocate that they had requested support on a particular aspect of the person’s life and would not engage in discussion with the advocate on the restrictive practice issue. In the interim, family members were supported to access Guardianship and the associated decision making role. The service instructed the advocate that there was no longer a role for the advocate in the case as the family were acting in the person’s interests and as decision maker. The case is on-going.

4.

Type of Case

As the service becomes more established, more vulnerable people with disabilities are being referred for advocacy support. These cases have multiple complex issues, often with a lengthy history with service providers, and a context that needs to be understood before progress can be made that will effect change for the person. Cases are presenting where people have significant issues in core human rights areas of safety and health, lack of meaningful occupation or community participation, lack of family and other natural supports and lack of choice of housing and accommodation. Advocates are receiving more enquiries on behalf of people who have lived long-term in institutional settings. Many of these people have not had updated speech and language therapy interventions or person centred plans (PCPs) which show developments and improvements in their lives. Many PCPs place emphasis on health and safety rather than lifestyle, life choices or involvement in decision-making processes. When Advocates work with these individuals there is a great deal of time spent trying to understand communication and negotiating with service providers to provide communication support to assist the person to make a choice or decision. In order to present and represent will and preference the advocate must spend time interacting with the person in their different surroundings and observing their interactions with others to ensure he/she has evidence to support the representation. Advocates are working in environments where the people who use the service have traditionally not been involved when decisions which affect them are made. The challenge for advocates is to ensure the person is included and that the service provider is fully engaged with the process. There has been an increase in requests for advocacy support for people who wish to pursue new living arrangements where the request has been ignored or considered not feasible by the service provider. 6

Advocates have also noted an increase in referrals of young people with disabilities who are experiencing problems in family breakdown situations and need support in having their voices heard, people in acute hospital and rehabilitation settings who do not need to be there and where no residential service or home care package is available for them to move on and adults with disabilities living with elderly family members where there has to date been little or no support. During the year there was an increase in the number of cases supporting parents with disabilities (usually intellectual disability or mental health issues) involved in the legal and pre-legal child protection process. When this was noted in June 2012 a new field was added to the electronic case management system to capture this information. 36 cases concerning child protection were logged from June 2012. There has also been an increase in some regions in referrals of people with autism, Asperger’s Syndrome and acquired brain injury. Mark is a Ward of Court following an Acquired Brain Injury. He also has a speech impairment and often becomes overwhelmed when dealing with professionals or in group settings. The advocate supported Mark to liaise with his wardship committee and legal professionals in the process of purchasing a house. The advocate supported him to highlight delays and the impact they were having to the Ward of Court Service. The advocate also supported Mark to explore the option of renting and the support services available for sustaining tenancies, while a suitable property was sought. A suitable property was identified. Throughout the course of the advocacy work, the advocate supported Mark to selfadvocate where possible. Initially formal meetings caused anxiety for him, however over time he developed greater confidence to speak up on issues. This growth in confidence is also evidenced in the fact that Mark will now speak on the phone. In the past he felt that his speech impairment was a barrier. Mark is now liaising with a relevant support service and this should open up new opportunities for training or employment. At times, Citizens Information Service staff facilitated communication between Mark and the advocate, due to literacy difficulties and memory issues. This interaction not only developed stronger links between the NAS advocate and CIS staff but it also gave the CIS staff an opportunity to explore wardship issues.

5.

Parents with Disabilities involved in Child Protection Cases

At a High Court Judicial Review (2005/474 JR), the Irish Human Rights Commission made a submission regarding the rights of parents who have impaired capacity to be fully supported throughout child care legal proceedings so that their Human Rights under a number of legislative articles are protected. The resulting Legal Aid circular 2/2007 states that an ‘appropriate person’ be appointed, if so required, under the criteria of the circular.

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During 2012 the number of NAS cases supporting clients with disabilities who are involved in child-care proceedings both at HSE case conferences and at District Court hearings, continued to increase. In most cases the parent(s) have an intellectual disability. The quality of NAS involvement in these cases has been praised by judges, solicitors and barristers. However there is a concern that these cases could take a disproportionate level of NAS resources, as there is potential for many referrals from the Legal Aid Board under the circular. These cases are very time consuming, involve much preparation and debriefing and in many cases there can be a need for two separate advocates to be appointed if both parents have ‘impaired capacity’. This issue was discussed at the National Advisory Group and whether or not this work should fall under the NAS remit. As a result of these discussions CIB decided to undertake research into this area and to consult with stakeholders, draw up a short report and make recommendations on NAS’s future involvement in such cases. It is hoped that this report will be available in mid-2013. Pamela is a woman recently diagnosed with an intellectual disability. For a range of reasons the HSE were looking for temporary care orders for her children. Pamela was extremely distressed and confused about what was going on and what role she could play in the court process. The advocate met with Pamela to get to know her and worked with her, contacting her solicitor to inform them about NAS and advocacy practice; preparing and supporting Pamela before she attended meetings, during meetings with her solicitor and during court hearings. Pamela finds these meetings very stressful. The advocate also supported Pamela to raise her opinions in relation to reports associated with the court process, to engage as much as possible and to input as effectively as she can. The advocate also supported her in exploring further her diagnosis of ID with relevant professionals. The advocate liaised with the landlord on Pamela’s behalf in relation to some outstanding urgent repairs. So far Pamela has had a positive and engaging relationship with her solicitor and barrister where she is able to express and input her opinions and perspective; she has also been able to attend the court and discuss the process that is going on around her. Pamela has recently been diagnosed with ID following exploration of reports carried out by the HSE which she was unaware of – this is still on-going and Pamela and advocate are currently looking for a meeting with her psychologist.

6.

Contacts with Services

In 2012 all regions have continued to promote the advocacy service in residential institutions. In some cases taking promotion to individual units, houses, and cluster teams in each of the residential service providers and made presentations to staff, service users and family members. Each team has kept a log of promotional work and contacts with services in their locality.

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In one region a programme of visits to Primary Care Teams commenced in the latter half of 2012. The aim of these presentations was to reach out to vulnerable adults living in the community. These meetings have proved very useful and have been attended by GP’s, Public Health Nurses, and other allied health professionals.

7.

Non Case-Work Support for Services

During 2012 NAS has assisted residential services working on plans to move people into community based settings as part of their strategic response to the Congregated Settings Report. NAS has also been consulted on rights based issues in services and has participated on rights review and restraints committees and teams. These committees actively engage in proofing supports to ensure they are least restrictive and most therapeutic for people with disabilities in their care. Other residential services approached NAS to seek support on the development of rightsbased financial management policies for service users.

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Brian is a young man with a moderate Intellectual Disability, Autism Spectrum Disorder, and Epilepsy. Brian lives with a parent and siblings who also have disability issues. He has very limited verbal skills. Brian was referred to NAS as a result of concerns raised by a Day Service Provider and HSE Training & Guidance Officer regarding the living conditions of some young adults with intellectual disabilities. Brian’s situation was of particular concern. Following a protracted period of advocacy work:  Brian was removed from a situation of neglect to a safe and stable environment within a respite setting  Brian was given access to basic care e.g. nutrition, personal care and medical services which had been absent, and in addition was provided with specialist speech & language assessments and psychological assessment in the respite placement  Brian was given opportunities to participate in his community life and to try new activities, and was therefore able to demonstrate some preferences to support staff  Brian was supported to re-establish contact with his natural circle of support, his father and extended family  Brian is currently living within a stable family home and is linked to appropriate medical services  Applications for day service provision are in progress. Advocacy support is also on-going to ensure that Brian’s voice is heard within his complex family situation. There is a significant partnership approach between NAS and HSE and circles of support in protecting Brian’s fundamental rights. The advocate implemented and worked with a key internationally recognised rights-based tool, the witness-observer approach, to achieve successful outcomes for Brian.

8.

Building Relationships at Local and National Level

NAS and CIB have worked through 2012 to build positive working relationships with relevant individuals, services and organisations at local and national level. This has benefited advocates progressing cases, achieving outcomes and arranging long term supports for clients. Building these relationships has also served to increase the knowledge about NAS and understanding of the role of advocacy. Some of the organisations which NAS and CIB have engaged with include; community welfare offices, local authorities, homeless persons services, children’s services, NUIG Disability Law Unit, migrant services, Garda Siochana, women’s refuges, community OT services, community nursing services, primary care teams, social work, psychotherapy , psychiatry, counselling and clinical staff, HSE mental health managers, specific autism services and family support services. NAS has also engaged with local disability support groups and service user and self-advocacy groups, 10

At national level NAS and CIB have engaged with the Legal Aid Board, the Wards of Court Office, The Family Support Agency, the Disability Equality Specialist Support Agency (DESSA), Centres for Independent Living, the Irish Advocacy Network, the Federation of Voluntary Bodies, the Disability federation of Ireland, Genio and the Third Age National Advocacy Programme. While staff, service and role changes within the HSE have posed challenges for the development of relationships in some counties, CIB and NAS have continued to engage closely with the HSE at local, regional and national level. A meeting was organised with the HSE National Disability Unit and National Advocacy Unit in order to develop more clarity about pathways to redress for advocates and how NAS should progress issues with the HSE when local avenues do not work. A protocol, setting out these pathways was agreed following this meeting. Key to this is allowing for due process and reasonable responses from services. In one instance, clarity about the respective roles of NAS and the Irish Advocacy Network when working with people with mental health difficulties was sought before access to a NAS advocate was agreed. NAS engaged in discussions with IAN regarding the work of both organisations and the type of advocacy offered i.e. peer and representative advocacy. Consequently NAS developed a ‘Clarity of Purpose’ document which outlines the purpose and scope of NAS. Further engagement with IAN is planned. It is still at times difficult to advance cases when services or professionals fail to respond to calls or letters, send standardised responses or quote lack of funding as a reason not to engage. In some cases services do not apply their own policies and in others advocates are blocked from attending meetings. It can be very difficult to bring all parties involved with an individual to work together to achieve an outcome for the person. The Wards of Court office has engaged with NAS on a number of cases and developed an understanding of the role of advocates in supporting their clients but in at least one documented incident they have refused to engage with an advocate even where the advocate had gone to great lengths to present the Ward’s wishes to the office. It remains the case that engagement with NAS relies greatly on the good will of services and professionals as there is no legal obligation for them to do so. Services are still more likely to seek a NAS service for issues external to the service (e.g. disagreement with family) while more reluctant to work with NAS on enduring issues that relate to the agencies themselves. This raises the question as to whether services should be obliged to engage with and facilitate advocates. However, promotion and better understanding of the advocacy service has improved the on-going development of relationships at local level during 2013. NAS, CISs and MABS services continue to develop constructive relationships in order to provide appropriate referral and joint working where this provides a better service for people with disabilities. The Advocacy Support Worker (ASW) Programme was established to enhance the capacity of Citizens Information Services to deliver advocacy as part of an integrated information, advice and advocacy service to the general public including people with disabilities. One of the aims of the ASW Programme is to support CISs’ collaboration with the National Advocacy Service to ensure people with disabilities receive the service 11

appropriate to their needs. ASWs have provided an important link between the services with regard to pre-case work, assessment and referral, have engaged in joint training events and information sessions and generally provided a bridge between NAS and mainstream advocacy in CISs.

This case concerns Joan, a woman with cerebral palsy who had been living independently in her home for many years with the support of PA’s and home helps but was in danger of losing her independence due to her deteriorating health situation Joan and her advocate worked intensively to research and develop alternatives to a residential placement. This work included consultation with service providers with the required experience to support Joan in a home situation. The proposal included formal and informal elements which would provide the required care (in home and some overnight support) as well as social supports. A major component of the plan was the support to be provided by friends and local community as the person did not have local family support. The option was costed at significantly less than the proposed residential option and would maintain Joan in her own home with her local connections retained. The proposal was rejected by the HSE on the grounds that they could not fund overnight or 24 hour support and the plan did not meet clinical requirements. Joan was informed that should she not accept the residential offer she would have to go to a nursing home. Joan and her advocate are exploring other ways in which she may return to live in her community with the appropriate supports. This may include further negotiations with the HSE or engaging in a complaints or review process.

9.

Demand for the Service

As NAS is charged with supporting the most vulnerable and isolated people with disabilities, decisions on offering an advocacy service are now being taken using access and eligibility criteria. NAS is now becoming more pro-active in focusing on those in residential services and isolated in the community who are not seeking out a service or being referred by a third party. Disability, vulnerability and level of risk if advocacy isn’t provided are the primary criteria. These are linked with criteria for eligibility for the Personal Advocacy Service (not commenced) described in the Citizens Information Act. While reiterating the need for advocates to use discretion in making the decision to take a case or not and to assess the needs of each individual, ten eligibility criteria were agreed. If a person is not considered eligible for the service under these criteria, every effort is made to refer the individual to another more appropriate service. This is the first year where the service reports an issue in managing demand and trying to balance casework across disability: intellectual, physical, sensory, mental health, and autism 12

spectrum. In the process of using the access and eligibility criteria, clients are given an initial assessment and, according to their needs, are either sign-posted or referred to a more appropriate service or supported to access community based and other state and non-state supports where options are available. Where CIS and/or MABS are involved in this process this provides a powerful holistic way of dealing with people struggling to engage with and access services in their community. As advocates develop full caseloads a prioritisation policy/workbook has been developed. This will be used in conjunction with the access and eligibility criteria to support advocates to assess further the vulnerability of the people referred, prioritise among those qualifying under the criteria and to direct and link those with less need to alternative self-advocacy supports provided by other agencies. Arising from this, advocates have had discussions with other agencies around their capacity to provide advocacy support and their responsibility to develop this part of their service, and they have begun questioning the responsibilities of other professionals to support people, particularly when impartiality is not an essential aspect of the enquiry/case. So far indications are that this has given advocates confidence in how they respond to enquiries. Advocates have stated that they feel clearer and stronger in their own understanding of the criteria and how to apply them. The prioritisation policy will be finalised in the first quarter of 2013 and will continue to be monitored and reviewed. The workload of advocates varies. Determined by the needs and priorities of their regions, some advocates are working with more people in residential services or nursing homes and others have more cases within the community. This tends to be because some counties have more residential services than others.

Work is on-going to develop a consistent approach to caseload management as NAS gains more understanding and experience of the nature, extent and complexity of cases. External factors also impact on time taken to address advocacy issues for example; response times, vulnerable client engagement, process requirements e.g. with the Ombudsman’s Office etc.

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This case study concerns Bernard, a young man with autism whose service had been withdrawn following incidents there and who had been left in the care of a frail parent whose health was deteriorating. The original service had been withdrawn after 10 years and until NAS got involved no alternative had been offered, despite the vulnerability of Bernard and his family, “lack of resources” was the reason given by the HSE for no service being put in place Neither Bernard nor his family had been provided with full information on the behaviours that had led to service withdrawal. There had been no long term planning for Bernard and this had resulted in his placement with an inappropriate service for eleven years. For a period of time Bernard had had no service at all. Bernard’s parent’s ill health, which required hospital treatment, had not been acknowledged and this also meant that the risks of this parent continuing as her son’s main carer had also not been acknowledged. Bernard’s parent had difficulty challenging the service providers on their decisions. Compounding this, the service providers did not respond to queries and challenges and when they did respond claimed they could do nothing due to a lack of resources. The advocate gathered all the necessary up-to-date information and reports relating to the withdrawal of service from Bernard and took some time to clarify where responsibility lay in relation to the duty of care for Bernard. The advocate supported Bernard at meetings with key decision makers and gathered supporting documentation to advocate for appropriate long term services for him. The advocate located additional services, including legal options that could support Bernard and his family. Due to the work of the advocate the family got access to new information to support Bernard’s case for a long term service. A part-time temporary service was put in place. There are on-going negotiations for a full time appropriate autism service and the advocate has continued to highlight the risks of the precarious situation in which Bernard and his family are in. The advocate has set up meetings between Bernard, his family and a local autism service to discuss day and part-time residential service for Bernard.

10.

Outcomes for People with Disabilities

When we look at outcomes beside issues, we see that Housing has the greatest proportion of successful outcomes at 23%, closely followed by Social Welfare, 22% and Health 22%, justice at 7% and Education and training at 6%. In child protection cases advocates are mainly acting to ensure that parents with disability have equal access to justice in a situation where the thrust of HSE support is with the children. Many of the outcomes documented relate to giving a person a voice and supporting them to get due process and this may not always result in achieving the outcome desired by the client. However the process does contribute to ensuring that people have been given access to information held about them to assist them in exploring options and making informed choices. This can give people more

control over their general situation and often their finances which they may not have had in 14

their lives to date, particularly where they have lived long term in residential institutions with few or no expectations for their lives. As advocates have developed working relationships with residential and day settings, more people with communication differences are receiving a service. Advocates report, in some instances, a lack of developmental opportunities for people with communication differences and attachment of labels which preclude participation in ordinary life experiences. Advocates report limited if any change in people’s lives over the preceding years and have worked to re-engage speech and language and other multi-disciplinary team services to promote input to decision making processes. Advocates observe reluctance among service providers to challenge families where decisions are being made excluding the person’s will and preference in the areas of finance, independent living and lifestyle choices.

Much of the work of advocates supports people to complain about poor practice, including; exclusion, lack of community connection, medication issues and (often resulting) challenging behaviour. Much of the work of advocates supports people to complain about poor practice, including; exclusion, lack of community connection, medication issues and (often resulting) challenging behaviour. 10.1 Some Examples of Outcomes achieved for people with Disabilities The following are some outcomes for clients logged at case closure on the electronic case management system by advocates under a number of headings. Living Arrangements 

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Numerous cases relate to advocates supporting people in their move from residential institutions to transitional housing or to semi or fully independent living. In one case an advocate supported a man who had been living in a residential institution for 27 years to move to his own apartment. In another case, with the support of an advocate, a man with intellectual disability moved from a residential institution to an apartment of his own with staff on hand. Problems he had with staff have now been resolved with the advocate’s help and a social worker is now involved. In another case a woman who had lived in a residential institution for 30 years was told she was moving. After exploring options with the advocate she decided that she wished to move to another residential setting within the same service. She preferred this residential setting over fully independent living as she is keen to continue social contact with other residents. Her new location is more independent and private and she has been fully involved in decorating and choosing furnishings. Advocate assisted a wheelchair user with a number of personal care needs which could not be met within homeless services where he was living. Advocate assisted the man in applying to his local support service to attend a day service and access FAS training. He has now moved back to independent living in his home county which was what he desired. 15

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Advocate met with a man with intellectual disability, his key worker and family to develop an action plan and circle of support to achieve his goal. As there were legal issues around capacity the advocate supported him to get legal advice to enable decision making and supported him through the steps needed to purchase a house with his own funds in his name. Advocate worked with this woman to explore possible options and wishes about where she wanted to live, including the option of returning home. When this possibility was no longer available she was supported to try a couple of different options. She is now settled in a home with support workers and is happy with her situation When this case commenced this man was living in a residential service for people with acquired brain injury. He was unhappy and wished to move to a more independent setting. He is now living in a shared house with supports in place. Prior to the intervention of the advocate this woman wheelchair user lived in very poor conditions, her house was not accessible, was not centrally heated and the roof was in bad need of repair. Her house has now been fully adapted to meet her needs and is in an excellent state of repair. This person had been served with an eviction notice and the advocate worked with him to look at options of supported living within the community as he was unable to live unaided and was aware that he would need a higher level of support for the future as his condition was deteriorating. He now has a council house and his current care package has been transferred. When the advocate became involved this person was feeling under pressure from her service to accept a place being offered although it was not what she wanted. She wanted to move to a service where she had some friends. She felt that her wishes were being ignored. With advocacy support an agreement was reached with the manager of the residential institution to slow the process down and give her an opportunity to explore the service that she was interested in. The outcome was that she got a place in the service where she wanted to live. Advocate assisted this woman in her 70s with mental health difficulties to move towns and establish home in a new community. Advocate assisted her to establish new support networks including local community groups, education classes, mental health support, public health nurse, social worker and meals on wheels.

Education 

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Many people with disabilities have been supported to access training and education including computer courses from the local VEC, literacy classes and distance-learning courses that can be completed from home. Advocates have also supported people in meetings with education providers to ensure a clear understanding of the person’s support needs and linked people with Disability Access Services in colleges. Others have been supported to discuss their disability with 16

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the college authorities and draw up a support plan. These discussions have helped college personnel understand the additional challenges created by having a disability in a college environment. In one case the advocate worked with the person and the course co-ordinator to ensure that all course work was carried out in locations that could be accessed by a wheelchair user independently. A person on the autistic spectrum was supported to articulate the reality that due to a break in relationship he should not be pushed to return to school prior to sitting his leaving certificate and that the school should do everything possible to accommodate him to prepare from home. The school agreed to this. Advocate spent significant time with this person and his mother exploring options around pursuing a leaving certificate or looking at alternatives due to anxieties he was expressing and to link in with mental health services. This person, (with the support of his mother) chose to move to a specific Asperger’s service and the advocate made the case on his behalf to the disability manager to secure funding for this option. He engaged with this service around Asperger’s issues for one year and then transferred to a college for supported further education. Prior to advocacy intervention he was not attending for Foundation Leaving Certificate classes and was self-harming as a result of anxiety it was causing. Now he is engaged in further education. People with intellectual disability have been supported to explore education and training specific to their needs and advocates have linked people with self-advocacy programmes including IAM advocacy training, RUA training and other appropriate further education in DCU and Trinity College. Advocate supported a person with mental health difficulties to review a decision to drop out of 3rd level education; to re-open discussions with tutors around an apprenticeship he decided to work towards completing and to engage with outreach supports, linking in with 3rd level if required One case involved supporting a parent to successfully argue for home tuition on the basis of support needs that were previously seen as behavioural problems and as a result restricting access to the home tuition scheme. This also involved making representations to the school concerned and the education welfare services around the support needs of young people with an Autistic Spectrum condition and the very real, significant anxiety they can experience as a result of engagement with mainstream education that does not seek to accommodate their specific needs This person has a learning difficulty and cannot read and write. He wanted a specialised literacy class with a tutor who was aware of his traveller culture. Advocate organised one-to-one sessions in a centre which provides programmes for travellers and settled travellers.

Employment

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Advocates have worked with a number of people with disabilities who have been treated unfairly in the workplace because of their disability. These cases included supporting people in taking cases under the Employment Equality Act, preparing complaints, representation at Tribunal hearings and submissions on outstanding matters to the Equality Officer. With the support of an advocate this person received a Redundancy payment and an apology from her employer for how she had been treated because of her disability. She has now moved on to other employment and is being supported by her local EmployAbility service. In many cases advocates supported people to access supported employment services in their local area and assisted people with physical disability to engage with the EmployAbiity programme and work based training programmes specifically set up for people with physical disabilities. In one case the “reasonable accommodation” previously assessed and agreed in the work place was renegotiated with the employer as the person’s disability had progressed and their needs had changed. This was not initially accepted by the employer and the person’s job had been threatened.

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In numerous cases, due to the support of an advocate people with disabilities have maintained or increased personal assistance and home help hours appropriate to their needs Advocates have worked with people with mental health difficulties, making links at local level with necessary health professionals. In one case an advocate worked with a man to make contacts with the local Mental Health team (psychiatrist, occupational therapist and speech and speech and language therapist) who are now providing him with on-going support to address his anxiety Advocate worked with one young foreign national whose mother was initially concerned that her health was too poor to support her son during his transition from a mental health unit. They have no other family members in the country who could support them during this time. The advocate supported her to address any concerns with the service provider, gave her assurances that an independent organisation was there for her son should she become unable to cope and maintained a background supporting role until she and her son were settled into the new routine. Advocate assisted this woman to look at a number of alternative options in seeking therapy for her mental ill health. Following work with the advocate she has re-engaged with the Community Mental Health Services which are now willing to assist her. She will engage with this service and attend on a weekly basis. Advocates have worked with a number of people in residential services to seek a review of their medication regime because of family or staff concerns. In many cases these 18

reviews resulted in a reduction or change in the medication regime and in some cases an acknowledgement that other issues were causing behavioural problems and if these were addressed the need for medication would be lessened.

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This case concerns John, a young man who had difficulty moving from his family and engaging with psychiatric and residential support services. His first placement, achieved with the help of NAS, did not last and he returned to NAS for further assistance; it is hoped that this has led to a more successful long-term placement John has a mixed diagnosis including Autism Spectrum Disorder and a mental health problem. He had isolated himself in the family home for a couple of years, had engaged in self injurious behaviour and had some inappropriate interests. His parents had difficulties giving him sufficient support. When he had been referred to a psychiatrist he had not engaged with the process. He had previously attended an intellectual disability service but had difficulties when key staff moved on. Attempts to get him to engage again led to rows and he did not have much insight into his situation. The social worker from his previous service referred him to NAS. John’s Advocacy plan involved building a relationship with John, understanding his perspective and supporting him to engage with assessment and options arising, linking with possible providers and ensuring his voice was heard at meetings. At first the psychiatric service was resistant to NAS’s involvement but the advocate built a strong working relationship with the consultant and John engaged with the assessment process and with his GP. With the support of the advocate, he moved, at first temporarily, to a residential support service which he had chosen himself and he also began taking part in specialised and mainstream activities. The HSE provided funding for these services. John’s relationship with his family improved and at this stage the case was closed. Sometime later John’s parents referred him again to NAS because his residential placement had broken down and they feared that his supports package would be cut. His health had deteriorated (more frequent seizures) and the type of support service he was receiving had altered and he was no longer happy with it. There had been an incident with a fellow resident and later with a staff member. After being sectioned under the Mental Health Act he was discharged into the care of his parents. When NAS queried the service on what had occurred, the advocate was told that John had knowingly sabotaged the placement in order to return to the comfort of home. Again the advocate engaged with John, his parents the service and the HSE Disability service in order to reach an understanding of what had gone wrong, how new supports could be put in place and how extra individually tailored assistance would be available, if needed. The advocate provided a lot of back-up to John in terms of contacting different services, assisting him with meetings and helping him to articulate his preferences. Initially the service refused to accept that any of John’s issues had any substance and wanted him to follow their medication regime without considering other triggers for his anxiety. John moved to a new residential support service and has had input into an individualised support package with strong involvement from his family, HSE disability services and the mental health team. Subsequently he moved to semi-independent living with outreach supports, with resource funding being utilised around areas he found particularly challenging. John now has a HSE social worker linked to his case who is acting in an oversight capacity regarding supports.

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11.

Service Level Agreements with HSE Funded Services

Following discussions at the National Advisory Group the HSE representative undertook to include the NAS in the policy and protocol section of the 2012 Service Level Agreements with HSE funded services. This means that agencies must comply with the policy or protocol included in this section. “The HSE acknowledges the role of the National Advocacy Service for people with disabilities (NAS). The voluntary agency X undertakes to make independent advocacy available to persons using its services. It will allow NAS advocates to access its premises/houses at reasonable hours; assist advocates to make private appointments with its service-users, facilitate its staff to cooperate with the advocate(s); make available to the advocate files or FOI documents relating to the person receiving advocacy, where this is requested; and accept the advocate as representing the person at case-conferences and multi-disciplinary meetings, where appropriate.” A background document was also drawn up spelling out what the service can expect of an advocate and what an advocate can expect from the service.

12.

Implementation of Congregated Settings Report

The HSE report ‘Time to Move on from Congregated Settings - A Strategy for Community Inclusion’ was published on the 28th June 2011. The Report proposes a new model of support in the community for those in congregated settings. The model envisages that people living in congregated settings will move to dispersed forms of housing in ordinary communities, provided mainly by housing authorities. A National Implementation Group, chaired by the HSE, has been set up to drive and implement the transitioning program. NAS worked with the implementation Group to draft a policy to inform good practice for services engaging in this transition, which respects the dignity and enhances choice for people moving out of congregated settings. It is expected that if services follow this transition planning template, in a person centred way, independent, representative advocacy will not be required for the vast majority of people moving out of congregated settings. A referral to NAS may be required where particular issues arise for individuals. CIB is now represented on the Implementation Group in order to provide a link to the NAS service. In the interim, NAS is receiving calls and enquiries from people who feel excluded from the decision making process in their moves from Congregated Settings. This has been relayed to and discussed at the National Advisory Group. NAS reports a number of cases where moves are occurring with little evidence of the person’s involvement or a process that engages them or their circle of support.

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13.

Bedding down a National Service

In order to ensure a consistent national approach to the development of the Service, CIB advocacy team met regularly with the five managers and chairs of the service during the year. These meetings involved national planning, discussion and agreement on national policies, training, promotion, access and eligibility, communications, referral, single point of telephone contact and regional and national advisory group activities. Every effort has been made to ensure a consistent national approach, however the regional structure does pose challenges in this regard with some variation in approaches to development and responses to challenges. It is hoped that advocates will have more opportunity to meet at national level in 2013.

14.

Limited Review

As requested by the Department of Social Protection, CIB issued a tender for an interim limited review of NAS in September 2012. The contract was awarded to Round Table Solutions. In the review the consultants were asked to focus on:  Good practice in NAS service delivery in the area of effective caseload management  Issues of governance and accountability for a service working with very vulnerable people  In the light of NAS experience to date, whether to recommend that aspects of the Citizens Information Act relating to statutory powers for advocates be introduced or amended. An extensive consultation has already taken place with CIB, NAS and other key stakeholders across the country. An advisory group has met twice to date and considered an interim report which suggests that the structure does not lend itself to developing a consistent national approach across the five regions. A final report is expected in March 2013.

15.

Supporting Advocates - Supervision, Case Review, Reflective Practice and Training

In order to ensure consistent, quality practice among advocates across the country, advocates continue to be supported and supervised within a range of support systems including team meetings, peer support, coaching, case review, line management and external supervision. Senior advocates coach and co-work complex cases with advocates as needed and work intensively with the advocacy team on waiting lists, pre-assessment planning and pre-casework. Team meetings focus on practice and implementation of policies. These sessions have also enabled the team to identify the skills set within the team and advocates link in individually with each other when appropriate to utilise the knowledge, skills and experience of their 22

peers. Advocates bring cases for group discussion and in the process share knowledge, build capacity, reflect on practice and help to build a cohesive team. Case reviews are carried out regularly in all regions. These provide an opportunity to develop best practice, to identify training needs and to support advocates. A template (designed by Senior Advocates in consultation with advocates) has been developed to track discussion and agreed actions at review. This will be a useful document for all regions in 2013. In preparing for case review the Manager accesses the electronic case management system and reviews the cases held by the advocate, this gives the opportunity to review the advocacy pathway and the actions carried out by the advocate since last case review. In preparation for case review the Advocates can refer to the last case review document and review and reflect on their work to date. Across the country there were a number of long term sick-leave absences, maternity leave and a few IR issues, relating to the transition from pilot projects, which have an impact on the ability of NAS to meet the demands on the service. Region 4 recruited a panel for the first six months of 2013. It is hoped the panel will cover some planned and potentially unplanned leave in 2013. Also in some regions (in particular the west and south west), advocates are covering large counties and due to the nature of the work, need to meet face to face with clients. This means that travel is taking up a significant amount of advocates’ time in these counties. However feedback from regions indicates that teams are working well together, that advocates have a firm commitment to quality, are flexible, have a strong value base and remain enthusiastic and dedicated to the work. Administrators now support the advocacy team as part of the Single Point of Telephone Contact (SPOTC) Initiative, doing low level initial enquiry and assessment work with clients. This process is being tested and evaluated as part of a national pilot project to improve access to services for the public.

16.

Training

During 2012 NAS managers planned and co-ordinated training regionally and nationally – identifying and prioritising training for teams in line with their requirements and skill set. During 2012 NAS staff undertook training in areas like; HIQA Standards, Mental Health Training, Assistive Technology, Social Policy, Autism Awareness, Self-Care, Presentation Skills ,Identification of Need Children & Families, Manual Handling, Litigation etc. A small number of advocates completed the CIB Information Providers’ Programme. Managers attended training on the Performance Management Development System in 2012 with the intention of rolling this out nationally in 2013. This will enable a comprehensive skills analysis of the Regional Teams and inform regional and national training programmes for NAS. Staff attended training on the Single Point of Telephone Contact (SPOTC). 23

Training in relation to working with parents (with disabilities) of children in childcare proceedings was scheduled for December but has been postponed until February 2013. This tailor made two day programme was developed in cooperation between NAS Region 4 and UCC. It will be delivered by the Law Department in UCC and will be attended by NAS advocates from all 5 regions. There is an identified need to develop a set of core training modules that all current and new NAS staff should complete, to ensure standardisation and quality practice. Such ‘core’ training would address the ‘clarity of purpose’ that is required in order for the national team to have a common understanding of the role, boundaries and limitations of the service. Planning for this training will take place in 2013.

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Advocacy Standards

Advocacy standards specific to NAS are currently being compiled and will be mapped on to the EFQM, (European Foundation for Quality Management) Excellence Model. The Centre for Competitiveness is the EFQM partner in Ireland and has been contracted to provide accreditation of quality standards across CIB partner networks. NAS will engage in this accreditation process during 2013/14.

18.

National Advocacy Policy/Code of Practice

The National Advocacy Code of Practice aims to provide a national framework for NAS and clarity for advocates on NAS’s role, scope, principles, defining values, standards, and the legal and human rights context in which NAS operates. The policies, standard procedures and toolkits developed to guide quality advocacy practice will link with and be informed by the code of practice. During 2013 this document will be redrafted and completed, current draft policies and procedures edited, gaps in necessary policies and procedures and toolkits will be identified and drafted in collaboration with an advisory group. This will become an on-line resource for all advocates working in the NAS. This, along with procedures for Case Management /Recording, Feedback and Complaints (including imaginative ways of acquiring feedback from people who communicate differently) will all be prioritised in 2013. The Policy and Practice Guidelines for working with people who communicate differently will be reviewed and expanded in 2013 as part of the NAS Code of Practice. Appropriate policies are an invaluable support to advocates, they assist in building best practice, they assist the advocate to work within the boundaries of the service and they support advocates to work confidently and safely on behalf of clients. During 2012 a range of policies and procedures developed to guide good practice in advocacy work in the NAS and in the mainstream CIS context were reviewed to ensure national consistency and to fill any gaps which relate to working with very vulnerable people. These policies are available on Advocacy Infonet and will be reviewed regularly. They include; access and eligibility,

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vulnerable adults, confidentiality, conflict of Interest, complaints, service User Feedback, case prioritisation, child protection, external supervision, personal safety procedures etc. A National Advocacy Service Descriptor, Aims, Vision and Mission Statement have also been agreed. CIB and NAS are working together on a lone worker policy which was developed from actual scenarios encountered by advocates. Training has been organised for all NAS staff to assess risk, follow agreed procedures and protect themselves in lone working situations. Media coverage which included anonymised case studies from a CIB report generated some concern about data protection during 2012. A policy on anonymising case studies was drafted and this is also available on Infonet.

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National and Regional Advisory Groups

When NAS was set up, five regional groups and one national advisory group were set up t o advise

and support the Citizens Information Board and the Citizen Information Services with regard to the development and delivery of the National Advocacy Service for people with disabilities in line with CIB legislative requirements and disability policy as set out in the National Disability Strategy. The aim of the groups was to assist CIB and the NAS in developing a strategic approach to the delivery of a National Advocacy Service so that people with disabilities secure access to their rights and entitlements, experience greater participation in society and an enhancement in their quality of life. The National Advisory Group met on three occasions in 2012. To date NAS managers have made presentations and sought advice in areas like; NAS involvement in child protection cases, case prioritisation, difficulties in accessing residential institutions, draft vulnerable adults policy, inappropriate placement of younger people with disabilities in nursing homes and issues around Approved Agents for Social Welfare payments. Cases were cited where services moved people from residential institutions into the community without sufficient reference to good, person-centred practice, leaving people sometimes more isolated or in less suitable surroundings. Difficulties were also identified for people moving into housing in the community and accessing rent supplement. The advice and avenues for resolving some of these issues and influencing policy and practice at national level that the National Advisory Group has provided has been invaluable to the service to date. Four regions now have active regional Advisory Groups and NAS reports that they have been a strong resource and source of direction and advice for NAS boards and staff at regional level. Many of the issues brought to the National Advisory Group were initially discussed at regional level. “The insights and expertise of the members are valuable and it (the Regional Advisory Group) provides NAS with an opportunity to look at issues from the point of view of other people who have a strong interest in the development of representative advocacy for people with disabilities”.

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20.

Single Point of Initial Telephone Contact (SPOTC)

NAS is one of the CIB partner services to pilot the single point of initial telephone contact (SPOTC). SPOTC increases the range of the NAS service offer to the public by pooling the five administrator resources from across the regions to make up a “virtual call centre” for the public with its own dedicated number 0761 07 3000. Region 1 took the lead role in this project during the year. The Single Point of Initial Telephone Contact for NAS was launched in Nov 2012 supported by all five regions. This is the first time the public has a dedicated number for the National Advocacy Service with a trained and dedicated team of administrators to service it. This team is now operating as an integrated virtual call centre for the public who want to access information about disability specific rights issues, to get more information about NAS or to make a referral. The lines are open between 10am and 4pm Monday to Friday. Administrators have been trained to call-handle initial customer calls coming into NAS and this provides one number for the public to remember nationally and a dedicated team to take calls and make an initial assessment. Once a person has been assigned an advocate they are then in direct contact with that advocate throughout their case.

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Influencing Policy

NAS has drafted and contributed to CIB policy submissions on:  Draft HIQA Standards for Residential Services for People with Disability  Rent Supplement Problems  CIB Pre Budget Submission  Domiciliary Care Allowance  Proposed changes to payments for young people with a disability NAS has presented back-up case studies to the National Advisory Group on a number of issues arising for people with disabilities for whom they are advocating and achieved some policy change in the process. These include:  Inappropriate placements in nursing homes  Lack of monitoring of ‘Appointed Agents’  Access for advocates to residential services  Access for advocates to mental health services  Rent Allowance for those leaving long term residential care  HSE Vulnerable Adults Working Group  New Directions  Law Reform Commission on Criminal Justice Bill  Child Care Act In addition NAS and CIB have been involved in the National Congregated Settings Implementation group and the Region 3 NAS Manager contributed to the development of a 26

Community Transition Plan and a document setting out the Key Person Centred Planning Ingredients for successful transition and integration of people moving from congregated settings into their communities. Presentations have been made to the HSE National Disability Governance Group and the Department of Social Protection Disability Forum. A submission was also made to the Department of Social Protection looking for better monitoring of ‘Agents’ appointed to manage the finances of vulnerable people with disabilities. One Advocate sits on a Disability Cluster Group, this group has a long history of highlighting disability and policy issues in the local area, the Group comprises of many groups/services who work with people with disabilities. Senior Advocates from Regions 1 and 2 have attended HSE Dublin North East Regional Consultative Forum Meetings. The NAS were invited to participate by HSE senior management. These meetings have discussed implementation of Value for Money, Time to Move On from Congregated Settings, Day Service reform and other policy initiatives in the region and NAS has raised issues of inappropriate placements and service provision throughout the region. Jeffrey is 57 years old and previously held down a professional job and lived independently in the community. He became unwell and was admitted to hospital. He was discharged from hospital to a nursing home three and a half years ago. Professionals did not expect him to ‘become so well’ and therefore there was no exit plan for him to leave the nursing home. After two and a half years in the nursing home he was referred to a social worker and his case was reviewed. His GP, family and the nursing home all agreed he should move to community living. The social worker began working with him and referred him to the community occupational therapist. The social worker then went on maternity leave and wrote to say that no other social worker would be appointed. The case was referred from the nursing home to NAS six months later. The advocate made many representations. There is a dispute as to who does the OT assessment. The Community OT will only work with clients in the community. OT assessment is now done but there is no social worker or other relevant person to coordinate the move to the community. The senior social worker in the Primary Care Team has asked the GP to call a case conference. The GP says he cannot call a case conference but will attend one if it is called by someone else. There are no clear protocols over who should lead in this case. This person’s disability does not ‘fit’ easily into set disability areas.

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22.

Ensuring Future Professionals have an Understanding of Advocacy

One NAS Regional Manager delivered NAS Workshops for the “Intellectual Disability Module” of the Clinical Psychology PhD Programme at UCD. This year the department asked NAS to extend this into a workshop with representation from NAS customers who have an intellectual disability and who recently accessed and benefited from NAS advocacy. NAS sourced two such customers who consented and undertook the work on a commercial basis. This was a good occasion for clients to meet with the PhD students and present on their life story and their own personal experience of NAS advocacy. One person asked that the NAS advocate attend with her and this was facilitated. The feedback from the PhD students was extremely positive and they found the real life story element very powerful and energising. They noted that they were now better informed to encourage appropriate referrals in their own work in the coming years when they take up posts as fully qualified clinicians. A Region 1 Advocate and Manager also delivered an “Advocacy and Disability” lecture as part of the Psychology Department’s “Advocacy and Disability Module.” It was attended by students from the Disability Masters Programme, Social Science, and Psychology.

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