Inclusion & Choice for Individuals with Complex Needs

From the Outside In:

Inclusion & Choice for Individuals with Complex Needs

Battery Hotel, St. John’s, Newfoundland

October 20-21, 2009

Conference report prepared by

Martha Muzychka, ABC – Praxis Communications

With additional material supplied by Andrew Safer

From the Outside In conference was organized by the following organizations:

NAVNET, a new government and community partnership that will be working to address systems barriers that make it difficult for individuals in St. John’s with “complex needs” to obtain support

To contact NAVNET, please call or write Lisa Zigler, Project Coordinator (709) 777-3090 E-mail:

The NL Housing and Homelessness Network (NLHHN), is a group of community-based service providers, municipal, provincial, and federal department and agencies, and representatives of persons at risk of homelessness, which are committed to working collaboratively on issues related to homelessness and housing.

To contact NLHHN, please call or write Dave Murphy, Coordinator (709) 691-7570 E-mail:

Table of Contents

Special Events
Key Note Presentations
Panel Discussions
Workshops
Evaluation Summaries (Day OneDay Two)

1. SPECIAL EVENTS

Day One: October 20, 2009

KILAUTIUP SONGUNINGA -- The Strength of the Drum is an aboriginal drum group whose members perform Inuit drum dancing, throat singing, Inuit music, Inuit games, and story telling. The conference opened with their performance, setting a tone for inclusion, listening, and building community.

HON SUSAN SULLIVAN, Minister for Human Relations, Labour and Employment brought greetings on behalf of the provincial government. The Minister profiled several initiatives and funding programs in Newfoundland and Labrador. She expressed support for the innovations that continue in addressing the needs of people with multiple and complex needs and congratulated the organizers on creating such a successful event for learning.

NAVNET & NLHHN WELCOME– Colleen Simms, Regional Director for Mental Health and Addictions (Eastern Health) and Sheldon Pollett, Executive Director of Choices for Youth highlighted the work of NAVNET and the Newfoundland and Labrador Housing and Homelessness Network.

INCLUSION CHOIR – The afternoon began with a performance by the Inclusion Choir of Stella Burry Community Services. Membership is open to any member of the Stella Burry community – the only requirement is the desire to make music together. The choir has been in existence since the fall of 2007 and has 30 full time members with a growing roster of others who join in from time to time. They are in demand for their lively and thought provoking performances at gatherings that explore such themes as housing, poverty literacy and indeed, inclusion in the community for all members. The Choir provided inspiration and modelled the benefits of inclusion and participation for people with multiple and complex needs.

Day Two: October 21, 2009

CLOSING REMARKS –Lisa Zigler – Project Coordinator of NAVNET thanked the Australian and Ontario presenters and turned the microphone over to Anne Leonard who thanked Stella Burry, Choices for Youth, and the Tommy Sexton Centre for inspiring and invigorating her and her colleagues. “We’ve learned an incredible amount from you,” she said. “Like you, we’re looking at which part of your puzzle fits into our bit of jigsaw.” She thanked Lisa and Dave Murphy (NL Housing and Homelessness Network) for the “enormous amount of time and commitment they put into this.” James Lim praised conference participants for “the level of enthusiasm and commitment you all share”, and added, “I have a strong feeling that you are heading up the right way, and you’re probably a few steps in front of us.” Lisa presented the Australian guests with a parting gift, and James Lim presented Dave Murphy and Lisa with a didgeridoo, a traditional Australian instrument. Dave said the organizing committee plans to put on more conferences like this in the future, and added that they are looking forward to receiving input on topics that would be of benefit.

2. KEYNOTE PRESENTATIONS (Oct. 20, 2009)

Keynote Address I– Multiple and Complex Needs Initiative, VictoriaAustralia

Anne Leonard, Manager of the Multiple and Complex Needs Initiative (MACNI) a state-wide cross program initiative led by the Victorian State Government, based in Melbourne, Australia.

Melinda Kidgell, Manager Community Outreach Services with the Melbourne Central Division of the Salvation Army

MACNI developed from concerns raised by service providers, clinicians, carers, advocacy groups, Police, Courts and others. They were seeing poor service outcomes for a small but significant group with complex needs that challenge existing policy and legislative frameworks. There was strong stakeholder support for change. Today MACNI receives funding from three key ministries: Health, Justice, and Human Services.

MACNI began by carrying out some scoping work which involved two years of consultation and data collection (2002-2004). They identified a group of 247 individuals with “multiple and complex” needs. The costs associated with supporting these individuals averaged $248,000 and the highest cost package was 2002/2003 was $643,000. MACNI also developed a client profile so they could understand better what services were being used and what was needed.

MACNI established clear goals for their clients:

•Achieve stability in: housing, health and well-being, safety, social connectedness

•Provide a platform for long-term engagement in the service system

•Pursue planned and consistent therapeutic goals for each person

And they established what they wanted from their partners:

•Greater collaboration, partnership, flexibility (“seamless”, “joined up”)

•Better use of service resources – “capacity building”

•Better use of financial resources – cost effectiveness

The key parts to the MACNI model include: regional coordination mechanisms (within government); a legislative framework; and an assessment, planning and intensive case management function. In addition, the program is time-limited and is funded through client attached dollars. MACNI’s first phase of operation ran from 2004 to 2009. They engaged in consultation and referral processes involving different levels of services. Some key statistics from this period:

•84 referrals (from regions)

•79 determined eligible

•56 care plans determined

•39 care plans extended into second year

•39 care plans concluded

They identified key learnings:

There was a steep learning curve
They had to develop a shared understanding of roles and responsibilities
There were some assumptions that did not hold up in actual practice (for example, they assumed housing was the most important consideration; they found that all the components needed equal consideration and planning.)

An important piece of MACNI’s ability to move forward in the next iteration of their work is building on the results found in their evaluation. MACNI, through an external evaluator, asked four key questions:

•Was there improvement in individual outcomes? Yes

•Was there improvement in service coordination? Yes

•Was the legislation adequate? Yes

•Did they achieve promised cost-benefit? Not clear.

The MACNI Care plan was described as an effective tool, and Anne noted that care plan coordination is a critical role in ensuring success. Other hallmarks of success included:

•Coordination through care teams (see more details on pg 14)

•Access to training and mentoring

•Reflective space – insists on focus and attention

•Some additional dollars useful

The MACNI model review also identified some key challenges. Anne noted that the service system and MACNI’s own model were complicated. This meant some transitions were difficult to negotiate, and the issues mirrored broader service system problems. Anne also reported that they also experienced issues with maintaining client momentum and commitment after MACNI involvement. A significant issue is the fact that MACNI is program offering time-limited intervention. Ongoing care planning is critical to sustaining the gains they fostered. They also found that good planning may reduce costs or it might not, depending on the client’s needs.

MACNI started its second phase in June 2009. They have continued with the legislative base and they have created a government gate-keeping and review group. The regional coordinators and regional panels are better resourced and they are able to make key decisions. There is also more staffing at the regional level and there are tighter guidelines around client attached dollars. Anne and Mel concluded their session by identifying future priorities: doing a good job for people from indigenous backgrounds and implementing a review from the perspective of service users.

Keynote Address II -- The Integrated Services Project (ISP): An inclusive model of intensive, transitional support for individuals with complex needs

Don Ferguson, An Executive Director with (New South Wales Department of Ageing Disability and Home Care, Sydney, Australia)
James Lim, Manager for Supported Living with the Integrated Services Project, NSW, Australia

Don and James described the process for the development of the Integrated Services Project (ISP). The project began in 1999 with the creation of a task force and the first participants were accepted in September 2005. The task force carried out research which confirmed the local experience. They found that there was:

Rigid service inclusion/exclusion criteria
Lack of capacity and incentives to be flexible in meeting individual needs
Lack of identified lead agency with responsibility for case management and coordination of multiple services
Lack of knowledge across services – confusion about roles and responsibilities, and how to access services
Lack of effective communication between service providers (crisis-driven responses; rigid boundaries)
Lack of access to specialist multidisciplinary expertise and tailored treatment options (eg drug and alcohol)
Lack of accommodation options

When ISP began the implementation phase, they had the endorsement of the whole government. All human service and justice agencies of the New South Wales Government were drawn in to support project development and identification of individuals of highest need.

The ISP received pilot funding of $26 million over three years running from July 2005 to 2009 to serve clients 18 years older in the Greater Sydney area.

The ISP aims to:

Improve a person’s housing stability, behaviour and social networks
Improve coordination and capacity of local supports
Reduce cost and impact of behaviour on self, others and services
Contribute to evidence base on supporting people with challenging behaviour

The ISP achieves this through the direct and immediate provision of time limited housing and support, as required, while working in partnership with each individual and their support networks to understand, plan and establish a more sustainable range of support from across their community and the specialist services system.

Don and James identified key components which worked successfully for Sydney’s model:

Diversity and immediacy of accommodation options
Staffing model used to support complex needs
Allocation of key workers, psychologist & other professionals for ongoing assessment and support during transitional placements.

Even with their success, the ISP also faced challenges. They found that the assessment unit was too restrictive and expensive. It became an early unintended focus of the program and was all-consuming. They also faced challenges with community acceptance. Don and James reported that administratively, certain time frame restrictions coupled with shaky financial support (they began as a pilot and funding was staggered), contributed to issues with maintaining a stable staff and also facilitating reliable intake and placement planning.

They also faced challenges from a program perspective, whereby transitioning clients to the next phase or locating appropriate service providers for service continuation needed further work.

In addition the ISP allowedstaff to put individual need ahead of service access issues, saying service fit becomes our problem not the individual’s. They reported that the

ISP has had a positive impact on individuals and services including a reduction in service cost from about $200,000 per year per person compared with $375,000 average cost pre-ISP. They also found there was a reduction in frequency and severity of behaviours, especially for those who have exited (36-42% decreases). They also found changes in service use with decreases in both hospital stays and imprisonment.

Based on their experience with the ISP, Don and James identified elements of effective service model. These are:

Timely identification of people and response to need
High quality, clear and accountable case management
Stable and flexible supported accommodation options
Specialist multidisciplinary assessment, formulation clinical, and behavioural interventions
Individualised treatments such as D&A, anger management, community participation and vocational programs
Interagency agreements and collaboration based on effective communication

In addition to having an impact on clients, the ISP also had an impact on the systems in which they worked. The ISP was influential in creating effective mechanisms for resolving service support issues at local and senior levels through the development of MOUs and committee participation.

3. PANEL DISCUSSION (OCT. 20, 2009)

Promoting Inclusion and Choice: Our vision for coordinated, integrated systems response -- Lessons learned and our vision for this province

Colleen Simms, Eastern Health - Regional Director for Mental Health and Addictions

Denise Hillier –Clinical Director - Stella Burry Community Services for Jocelyn Greene, Executive Director, Stella Burry Community Services

Joan Edwards Karmazyn – Past President of CHANNAL, Member of the Board of Directors- Mental Health Commission of Canada, Member of the National Network for Mental Health

Don Ferguson, Executive Director (New South Wales Department of Ageing Disability and Home Care, Sydney, Australia)

Anne Leonard – Manager of the Multiple and Complex Needs Initiative (MACNI) – Victoria, Australia

Three members of the panel represented a diversity of perspectives including Institutional, Community and Consumer/Survivors. They focused on their vision for an integrated system.

The presentations of Colleen Simms, Denise Hiller (for Jocelyn Greene) and Joan Edwards Karmazyn are summarized below. Don Ferguson (ISP-Sydney) and Anne Leonard (MACNI-Melbourne) answered additional questions on the lessons they learned from developing and implementing an integrated approach for clients with multiple and complex needs.

Their comments amplified material already presented in the keynote speeches summarized above, or addressed specific funding, programming, and planning issues.

Colleen Simmsbegan by noting that we live in a province whose scattered population and geography would challenge the most visionary and capable among us when it comes to providing services that are not only accessible to the person who needs them but also helpful in meeting the need. These sound like simple things, yet in a society where people with mental illness still experience stigma, ignorance and fear, these things aren’t at all simple.

However, the term complexity doesn’t really apply to the people we serve but the systems that we work in. We also know that those formal services that involve hospital beds and medications are only a small part of what people need to recover and get on with their lives. These things definitely make a difference but to really talk about what makes a difference we need to talk about homes, jobs and friends. And when those lives have been impacted with poverty, abuse, homelessness, severe illness, disability, brain injury, criminal activity, we are talking about much larger systems such as Education, HRLE, Housing, non government organizations, community organizations, CYFS, Justice and health that need to be integrated.

Colleen said we are struggling right now to work within government systems that sometimes just don’t make sense. Some benefits are built around specific diagnoses or disabilities to the exclusion of others. Clients have to have a certain IQ or income level; or have to be a client of a particular program to qualify for other programs. There’s no dedicated funding for a lot of what we do. In many instances there’s no policy. Or if there is existing policy, such as the case with home support, it doesn’t apply well to client situations so we create our own and call it a pilot project. Colleen noted that many of the programs existing started as pilot projects.

A truly integrated system would have funding packages that do not have discriminatory criteria. Our policies need to be broad and inclusive with appropriate accountability mechanisms. Restricting criteria to certain diseases or programs and sticking by those criteria does not in my opinion make us accountable for public money. We can’t be accountable without broad policies that are inclusive of the people who are in need. We have to put more into supportive housing options and employment opportunities.

An integrated system is also more than responsive; it is proactive and is integrated at a high level with promotion and prevention activities. We need more funding in literacy, early childhood development, parenting; and more effective secondary prevention strategies such as not drinking while pregnant. These things exist now in fragments however we need strong leadership throughout community and government to bring us all together and appropriately fund these programs. It is under this kind of integrated system that the most disenfranchised populations will be brought into the fold.