LiveWorkPlay presentation to the Select Committee on Developmental Services

Click here to read the SELECT COMMITTEE ON DEVELOPMENTAL SERVICES FINAL REPORT

Update: follow-up communication delivered to all members of the Select Committee and the Clerk:

As stated in our submission below, an issue of concern for LiveWorkPlay is the lack of province-wide measurement of relevant indicators of Ontario’s collective progress towards social inclusion for individuals with intellectual disabilities. While any measurement of “inclusion” is difficult, we believe that the answers to these six questions would help in understanding what sort of outcomes and impact are resulting from the annual Ontario investment in Developmental Services.

How many adults with developmental/intellectual disabilities are living in apartments or homes of their own?
How many adults with developmental/intellectual disabilities live in agency-owned staff-oriented homes?
How much of the annual Developmental Services budget is applied to supporting each of the above?

How many adults with developmental/intellectual disabilities are living included lives in the community with paid employment and other non-segregated community engagement such as sports, arts, and recreation with other citizens?
How many adults with developmental/intellectual disabilities are spending their daily lives mainly in segregated site-based agency environments that are exclusive to other people with disabilities and paid staff?
How much of the annual Developmental Services budget is applied to supporting each of the above?

It has been our experience that this information is not readily available for the simple reason that there is no requirement for anyone to collect or provide it. At LiveWorkPlay we believe it is important that the Committee ask these questions. If the answers are available, the data will provide an immediate indication of where we stand as a province in terms of how the Developmental Services budget is being invested, the type of results that are being produced, and the connection or lack of connection to the intended goal of social inclusion. If the answers are not available, then hopefully the Committee can recommend the development of new data collection that provides relevant indicators with respect to Developmental Services activities and results.

The work of Developmental Services agencies is as complex as the lives of the people they support, and at LiveWorkPlay we certainly appreciate the need for flexibility in supporting person-centred planning and community-based outcomes for each individual. We are concerned however that in an environment of financial scarcity, it remains unclear how much of the resources currently committed to Developmental Services in Ontario are targeted to activities that can be reasonably expected to achieve a socially inclusive outcome. Thank you again for your important work with the Committee and I would greatly appreciate any help you can provide with respect to the questions posed above.

(View this presentation in its original format)

“If our goal as a province is the social inclusion of people with intellectual disabilities, then we must seek to

increase our investment in that which includes people in their communities, and we must

work towards reducing and eliminating our investment in

that which excludes people from community”

Presentation to the Legislative Assembly of Ontario

Select Committee on Developmental Services

January 17, 2014

On behalf of the LiveWorkPlay organization, I appreciate the opportunity to contribute this written brief to the Select Committee on Developmental Services.

We have attached for you as an appendix our most recent Annual Report, and invite you to access that document in the event that you wish to learn more about LiveWorkPlay. It would be our pleasure to respond to any questions you have about our organization or this. In our annual report you will find many examples of the types of inclusive outcomes we have emphasized in this brief.

LiveWorkPlay was formally launched in 1995 as the outgrowth of a grassroots advocacy movement of individuals with developmental and intellectual disabilities, family members, and others who shared a belief in social inclusion.

As we move towards our 20^th anniversary celebrations in 2015, we find ourselves with multiple identities. We provide supports and services funded by the Ministry of Community and Social Services, through which we attempt to lead by example in promoting inclusive outcomes with the regulatory environment in which they are provided.

LiveWorkPlay also has an important identity that exists outside of funding partnerships, which is to express our belief in people with intellectual disabilities as valuable contributors to the diversity of our community and to the human family.

Our main interest in providing this brief is to contribute to a focus on the result that the Developmental Services system is morally and legislatively required to produce: the social inclusion of citizens with intellectual disabilities.

If our goal as a province is the social inclusion of people with intellectual disabilities, then we must seek to increase our investment in that which includes people in their communities, and we must work towards reducing and eliminating our investment in that which excludes people from the community. We will return to this theme after a brief review of funding and regulatory pressures.

Funding & Regulatory Pressures

Having seen many of the presentations and submissions provided to the Select Committee to date, we are aware that you have heard substantial arguments calling for increased funding. It is clear that there are many thousands of individuals and families without access to the supports they need.

Funding issues and pressures have been an ever-present concern with our organization since its founding in 1995, and we share concerns similar to what other agencies have identified. For example, the recruitment, training, and retention of quality staff is of critical importance to any human services endeavor. The Development Services sector is well past due for appropriate attention to this issue. Our work is demanding and important, and it is simply unfair to expect workers to experience indefinite loss of real income through ongoing wage freezes.

We want to be clear that at LiveWorkPlay we have always been creative, inventive, and innovative in developing additional funding sources, and have worked hard to be efficient and effective in their use. But as the Select Committee has heard from others, there are limits to fiscal creativity and efficiencies. Operational funds for the type of work that we do – building and maintaining relationships with individuals and families that carry on for five years and beyond – are not easily or readily available from non-government sources. Project grants and other short-term or non-renewable funds have helped LiveWorkPlay in many ways, but our most critical responsibility is to make sure those who rely on us can be confident that we will be continuing our high quality of service for years to come.

The Select Committee has also received many presentations that include discussion of challenges brought about by the introduction of the Developmental Services Ontario system and the Quality Assurance Measures. From the agency perspective, many of these concerns have been related to a loss of flexibility that has made it more difficult to serve individuals and families, creating distractions and inefficiencies for agencies that in turn frustrate those who are waiting for help.

We agree with many of these arguments, notwithstanding that we have seen many exceptional efforts from DSO staff in our region who have clearly done their best to help us fill vacancies with appropriate referrals that are made in a timely fashion. This is not always the case, but we have confidence that this can continue to improve. Our greater concern is with the choices that are (or are not) being made available to individuals and families when they are presented with the opportunity to access government-funded services.

A Reminder: The General Quality Assurance Measures for Service Agencies

LiveWorkPlay was supportive and actively participated in the transformation of developmental services process that was formally launched in 2004. At the request of MCSS representatives we have made several contributions to the Spotlight on Transformation newsletter and will continue if asked.

The Services and Supports to Promote the Social Inclusion of Persons with Developmental Disabilities Act, 2008, through the accompanying General QAM regulations, represents a continuation of that transformative spirit that began some ten years ago. LiveWorkPlay shares below a selection of these statements, not only because they remain both inspirational and appropriate as guidance for the future of developmental services, but also because they may assist in framing the future recommendations of the Select Committee.

Regarding the promotion of social inclusion, individual choice, independence, and rights:

Promoting social inclusion means supporting people so that they can be a part of the community through activities such as volunteering, working, and participating in local sports teams. Agencies must provide support to make sure people with developmental disabilities can be a part of the community where they live.

Agencies must make sure that people have the supports they need to live on their own or with others, and help people make informed choices.

All agencies must have a mission statement, service principles and a statement of rights. These talk about the agency’s values and explain how it provides support. They should show how the agency will help people participate and be included in their communities.

Is Developmental Services Delivering?

Does the current state of Developmental Services reflect the above requirements? How do we know?

An issue of concern for LiveWorkPlay is the lack of province-wide measurement of relevant indicators of our collective progress towards social inclusion for individuals with intellectual disabilities.

What percentage are living in apartments or homes of their own? How many individuals are truly a part of the community where they live? What number of individuals live in agency-owned staff-oriented homes, and/or spend their daily lives mainly in segregated site-based agency environments? How much choice do individuals have in determining the type of help they receive from funded agencies? Who is accountable for ensuring that support is focused on socially inclusive outcomes?

It has been our experience that this information is simply not available because there is no requirement for anyone to collect or provide it. It is important that the Province of Ontario ask these questions and find the answers. Until Ontario is actively measuring the impact of Developmental Services in consideration of these fundamental values, we have no means of accurately evaluating our progress.

This is acutely important at a time when our sector has been in a dialogue of resource scarcity for many years. At LiveWorkPlay we understand and appreciate that Ontario does not have the ability to make a dramatic overnight increase in Developmental Services financial investment. This means we have a responsibility to make sure that the resources we do have at our disposal are being directed appropriately. Social inclusion is the right thing to do. But are we doing it? How well?

Doing The Right Thing

As a brief synopsis of the LiveWorkPlay approach, and what we deliver to individuals, families, and taxpayers, we would like to share with the Select Committee that we do not operate group homes, sheltered workshops, or day programs. Although LiveWorkPlay once operated a day program and some small sheltered work initiatives, starting in 2008 we made a successful phased transition to fully community-based supports and services, which was completed in 2010.

In keeping with our mission (adopted 2011) of “helping the community welcome people with intellectual disabilities to live, work, and play as valued citizens” we support approximately 100 individuals each year through a person-centred planning process.

In explaining to individuals and families who we may assist them, we talk about support for three general outcomes: a home of one’s own, real paid work, and the enjoyment of education, recreation, arts, culture, volunteers, citizenship, and other engagement with the community alongside other citizens, with and without disabilities.

Working closely with family members, we have 12 full-time staff, about 150 volunteers, and about 80 community partners in the public, private, and non-profit sectors who help us realize our mission. As mentioned, this work is associated in a significant way with our MCSS funding partnership and service delivery, which represents about 60% of our annual budget and activities.

We also work hard to ensure a diversity of funding relationships, which has enabled us to engage in important initiatives that are not funded through our MCSS agreements. This includes our focus on supporting competitive paid employment and our contributions to that field through local, national, and international engagement with government, non-profit, and professional business networks.

Getting Results

Over the past 5 years we have seen positive results that far exceeded our own expectations, and more importantly, the expectations of those who rely on us for support. We have been honoured with local, national, and international invitations to share these results along with our methods and experiences. While we have appreciated this recognition, LiveWorkPlay is concerned that in our own jurisdiction our work is considered “innovative” when our assumed norms, activities, and results should simply be typical of any Developmental Services agency. These include:

Close to 100% of the 100 individuals we are currently supporting live in apartments, condominiums, townhomes, or single family homes with their own name on a lease or deed.
Close to 100% enjoy volunteerism, arts, culture, sports, education, and other social, recreational, and citizenship activities alongside other citizens, with and without disabilities.
More than 50% are employed at minimum wage or better in real workplaces (approximately double the employment rate for people with intellectual disabilities in the broader labour market). This employment ranges from a few hours a week to full-time, and includes the private, public, and non-profit sector, with jobs ranging from service to clerical and all points in between.

These are important statistics, but they do not capture the greater impact, such as the experience of fundamental human rights and freedoms, financial security, quality of life, and the establishment of social capital and reciprocal relationships in all aspects of life.

Although we are a relatively small agency, LiveWorkPlay has had the opportunity and experience of supporting individuals and families in crisis, including those with a dual diagnosis of intellectual disability and mental health issues. In learning the history of involvement of these individuals and families with Developmental Services we have seen many preventable harms. These can often be attributed to a reactive process whereby help was not made available until a full-blown crisis is at hand. The harm reduction (and cost savings) of a preventative approach are well known, and yet we find ourselves in a situation where Developmental Services has become largely devoted to reactive thinking.

Social Inclusion: Beyond Reaction

In sharing our results on the previous page, we are not suggesting that we have all the answers for all people. Systems are necessary and important. They provide an essential safety net for people in crisis and for people with complex needs for which community-based solutions are not easily found (even though no one should ever be permanently labeled as incapable of being included). LiveWorkPlay does not want to reduce the resources available to people in crisis and/or with complex needs, and joins the many voices speaking out in favour of additional means for crisis intervention and relief.

But no successful human services system can be based on reaction alone, and we believe it will be important for the Select Committee to consider those who are waiting (but not yet in crisis) and those who are becoming systems-dependent due to service delivery that is not focused on outcomes that bear a meaningful connection to social inclusion.

“If our goal as a province is the social inclusion of people with intellectual disabilities, then we must seek to increase

our investment in that which includes people in their communities, and we must

work towards reducing and eliminating our investment in

that which excludes people from community”

Despite legislative changes and corresponding changes in language and communication, the experience of individuals and families who engage with the Developmental Services system in Ontario continues to operate within a framework of infrastructure, supports, and services that are largely invested in separating people with intellectual disabilities from other citizens and the communities around them.

The dominant housing assumption continues to be the congregation of multiple individuals with intellectual disabilities in shared housing and staff-oriented environments. The investment and focus on what people with intellectual disabilities “do with their time” continues to be on day programs, sheltered workshops, and other congregated staff-centred places and practices.

Although the language of “person-centred planning” is now common throughout the Developmental Services system, the functional reality is that individuals and families continue to be presented with a limited set of choices: group homes, day programs, and other systems-oriented activities. But the QAM calls for supports to be focused on helping people find a home of their own, a job, friends, and social, recreational, and citizenship activities with the same opportunities and possibilities as are common to non-disabled citizens.

Education System: Homework Needed

LiveWorkPlay must also note that the public school system in our jurisdiction continues to host some of the strongest investment in segregated practices, whether this is represented by entire schools that are exclusively populated by individuals with disabilities, or classrooms within schools where Special Education students exist within the greater school environment, but are not educated alongside other students or immersed in the same social environment.

This of course has multiple negative impacts for all concerned: it teaches each of those separated groups of students that they do not belong together, attitudes that are then carried forward into adulthood, and contribute to the grooming of individuals and families for assumptions that lead to the perpetuation of segregated housing and community activity as an acceptable norm.

It is important to note the frequent concern expressed by families when discussing inclusive education: the fear that the resources made available to students through the Special Education system will disappear if they are moved to a classroom with other students. LiveWorkPlay advocacy for inclusive education does not include a call for a reduction in resources to students with intellectual disabilities. It calls for a shift in resources to support a more inclusive experience for all students.

Inclusion is never a mere physical presence in one environment or another. It is a rich and complex process befitting of what it means to be human and interdependent. It is a process that involves and requires support for all persons, not just those who have received diagnostic labels.

Non-segregated post-secondary educational experience remain elusive for people with intellectual disabilities in the Ottawa area. Working with specific individuals we have had some small successes in helping them enroll in regular classes with other students at the adult high school or in college, but this has often required a great deal of advocacy work and we have encountered a lot of resistance. Disability and accessibility resources in post-secondary institutions remain heavily focused on the inclusion of those with physical disabilities and more attention is required to a more diverse understanding of disability. It is appropriate that educational institutions should become leaders in this area.

Affordable Housing

An obvious barrier to supporting individuals with intellectual disabilities to live in homes of their own in the community is the almost impossible financial scenario that is faced by those with incomes in the range of $1000 per month. With the market rent of bachelor apartments at about $750, the cost of food, clothing, transportation, utilities and other essentials means that individuals must either receive financial support from family members who have the means to intervene, or must access the very minimal stock of below market rent housing options.

LiveWorkPlay has developed partnerships with non-profit housing providers and this has worked well. The communities are comprised of a variety of tenants paying a range of rents, and it is a very socially inclusive experience. However, simply put, there just aren’t enough of these units in existence. With the Ontario Disability Support Program housing allowance remaining below $500, starting each month more than $250 in the red on housing costs makes for a difficult life with choices that no citizen of Ontario should have to make.

Support for a dramatic increase in the availability of affordable housing units is essential at this time. It is simply impossible to support individuals with intellectual disabilities to live in homes of their own in the community if there is no suitable housing stock available to them. This contributes to the serious problem of individuals remaining at home with aging parents, awaiting an appropriate and affordable housing solution that never comes.

Conclusion

It would be our hope that what the Select Committee will take away from the LiveWorkPlay submission is that Ontario has already developed appropriate overarching guidelines for supporting an included life in the community for citizens with intellectual disabilities. However, there are not strong linkages between what the Developmental Services system and its partner agencies are delivering and what the system is supposed to accomplish. There is also a lack of useful data for measuring relevant progress.

As a province we need to understand how much of our Developmental Services investment is producing outcomes related to social inclusion. We need to make sure our resources are being used to do the right thing, and make the necessary adjustments to get those results.

The needs of individuals and families in crisis dominate the headlines, but it is important to remember that these situations tend to arise from many years or even decades of systems failures. As we continue to prioritize the needs of those in crisis, it is of critical importance that we simultaneously pursue changes that will ensure the reduction of crisis.

With the right supports at the right time, LiveWorkPlay believes the majority of individuals with intellectual disabilities in Ontario can live in homes of their own, and engage with the community as employees, volunteers, teammates, and other roles common to non-disabled persons. These outcomes can often be achieved through intensive support provided in the years after high school, with the independence and interdependence of the individual growing over time, and reducing the need for systems supports and interventions.

While it is not the case that such a path is readily or easily available for all individuals and families, an investment in this preventative approach will not only radically improve the quality of life for those who experience social inclusion success, it will also ensure that more intensive systems resources are available for those who need them most.

At present the work of our sector is not well understood by the citizens of Ontario. Their awareness is often limited to stories of tragedy, neglect, and other harms. It will be important in the years ahead to work with service delivery organizations to tell stories about people with intellectual disabilities living their lives as included and contributing citizens. These stories – supported by evidence of broader progress towards inclusive outcomes – should reflect not only the progress of the individual, but perhaps more importantly, the progress of the community in learning to be welcoming and inclusive.

In the end it is not Developmental Services alone that can produce an inclusive community. It is our job however to facilitate that change, leading by example through appropriate investment in strategies for the social inclusion outcomes we are called to deliver on behalf of the individuals, families, and taxpayers that are counting on us.

Respectfully submitted,

Keenan Wellar

Co-Leader & Director of Communications