Individualized Funding Coalition for Ontario

February 2023

An invitation for conversation and collective action! Welcome fellow citizens: individuals, families, friends, partners and allies! Join this event – a call for action, learning and hope!

Now is the Time! Thurs. March 23, 2023 – 6:30-8:00 pm

RSVP by Wednesday, March 22, 2023: REGISTER HERE

Have you experienced barriers that prevent you or someone you care about from living life as a full citizen? Have you or someone you care about who lives with disabilities, been waiting a long time for SSAH, Passport, or any other type of individualized funding in this province? Do you need adequate funding to pay support workers to help live a basic life like other citizens in Ontario? Do you wish you had a facilitator – someone that stands with “you” through life’s ups & downs? IF YOU ANSWERED YES TO ANY OF THESE QUESTIONS – THIS EVENT IS FOR YOU! HERE IS WHAT TO EXPECT:

A starting point for all of us!
Highlights from the Now is the Time paper!
A common message!
Actions that are doable! Sharing of ideas!
Partners & allies who are aligned and want fellow citizens – people and families living with disabilities – to do more than ‘just’ survive . . . and to have the right supports and funding for a self-directed tailor-made everyday life!
8:00-8:30 pm – An optional time for peer-to-peer conversations and questions.

DOWNLOAD THE EVENT FLYER HERE: Now is the Time! March 23, 2022-Flyer

October 2022

Now is the Time!

The Individualized Funding Coalition for Ontario (IFCO) is pleased to be launching a comprehensive paper called: Now is the Time, Key Principles and Core Elements to Bring About Effective Individualized Funding Mechanisms in Ontario. Click the image or this link to download Now is the Time

This paper is a synthesis of many of the writings produced by IFCO, as well as some provincial, national and international research reports and information, and direct input from people, families and others. It is about individualized funding, third party assistance like independent facilitation and planning, individualized mechanisms and structures for people including the recognition of rights, support for decision-making, social networks and more. All this leading to an effective individualized approach for living an everyday, ordinary life of inclusion and social connections.

The principles, core elements and approaches described in this paper apply to all people living with vulnerabilities at every stage of life from young children and families looking for community inclusion, to youth and adults living their own unique lives, to elders and seniors who want to stay in their homes, neighbourhoods and communities.

IFCO has had opportunity to collaborate with many like-minded individuals, families, allies, agencies and provincial partners over the past 28 years while working to build positive change. The kind of change that leads to people and their trusted others having control over key decisions, and having the funding and supports they need to live a good life expanding relationships and meeting others.

The values and principles taken up by IFCO have been affirmed by individuals, their families and/or trusted others over time and proven to be central elements of a desirable individualized funding model. These principles include community inclusion, community first, natural relationships and access to third party structures, (like independent facilitation and planning supports), to foster an everyday, ordinary life of inclusion. They have been re-affirmed recently with input from people, families, and allies at 10 different gatherings where IFCO was presenting and/or facilitating discussions in 2021 and 2022. Affirmation also came through many international research reports that have been published in the last 4 years that identify shared values and principles, similar to those we have named as crucial to the success of individualized funding, also lending credibility to the work.

The primary purpose of the first individualized funding programs developed in Ontario was to promote social inclusion by supporting individuals to remain in their homes and to contribute in their neighbourhoods and local community. The focus on social inclusion and supporting individuals (of all ages) to live in their homes, neighbourhood and local community has been significantly lost over the past 10 years.

Today, we are seeing less investment for individualized, inclusive type/home support funding being allocated for individuals with physical disabilities, individuals living with developmental/intellectual disabilities, and older citizens who need extra assistance. We are finding that the individuals and families who were devoted in their advocacy for social inclusion and who worked at creating individualized custom supports feel defeated. Not only because they are aging and have less capacity to continue to advocate for coherent options, but because they see a bleak future for their loved one and even for themselves. One of our allies has summed it up best: “For people with disabilities needing support it is like having a straight line to Long-Term Care.”

We all know that Long Term Care institutions continue to be heavily funded to grow and expand as a ‘residential’ option. LTC institutions appear to be the acceptable default option for seniors and people with disabilities. We have seen LTC being promoted and favoured for those living with significant needs in social media. Without investments in individualized funding, supportive housing arrangements and daily life, the future looks grim.

At recent IFCO gatherings, we heard loud and clear that people and families were highly dissatisfied with the lack of adequate and equitable individualized funding, the unreliability of the funding, and the lack of power and control they were given over the funding. They were also frustrated with the lack of resources they were given to engage independent facilitation and planning support to enhance their capacity for creating an everyday ordinary life in the community.

The Now is the Time paper outlines individualized funding approaches that recognize basic rights with supports for decision-making, along with good principles, and adequate funding to live a good life – all together keystone pieces that make a significant difference moving forward. The paper presents a way to ground joint action in core values and principles.

The Individualized Funding Coalition for Ontario recognizes the need to bring like-minded individuals, families, trusted others, allies, independent facilitators, agencies and provincial partners together for collective action and moving forward. We leave off with an invitation forthcoming for collective action . . . Now is the Time.

April 2022

The Provincial Election: Your chance to talk about individualized funding and adequate in-home supports for elders and people living with disabilities!

The issue of providing adequate funding for people living with disabilities, and for elders who want to stay in their own homes, has again come to the forefront in Ontario. Many individuals, families, and older adults are asking that funding be adequate and ‘individualized’ so they can 1/ live their best life and 2/ choose their own supporters – supporters who would be accountable to them and not a system. We are hearing a ‘shout out’ for a great deal more flexibility and less institutional-think in Ontario. Whether it be about the Ministry of Children, Community and Social Services (MCCSS) and funding for: Special Services at Home (SSAH), Passport or other types of individualized supports OR the Ministry of Health, for direct funding or self/family managed home care – all of these areas are needing new investments. To see recent data compiled by People for Personalized Funding, check out this link: Information regarding Passport and SSAH funding.

The Individualized Funding Coalition for Ontario is hearing the ‘call’ for a doubling of the current budget for ‘Home and Community Care’ from groups like Seniors for Social Action Ontario (SSAO) https://www.seniorsactionontario.com/ . We are also hearing about the importance of expanding the option of direct funding like self/family managed home care within that budget. Such an investment would mean this flexible option could be made available and accessible to more elders (and also others) needing health support at home. These requests are timely with more than 90% of older adults recently surveyed in Ontario saying they do NOT want to live in a long term care institution.

choice-gd77c27e28_1920 More and more we are hearing that older adults would rather have home care support in their homes. Yet, as citizens-at-large in Ontario, we are not hearing about large scale investments by the government to increase, enhance and transform home and community care supports and services in Ontario – despite what older citizens are asking for.

Leaders with IFCO, and other provincial groups, have concerns about the financial investments being announced to build additional long term care institutions in Ontario – what many call the warehousing of our citizens. One question being asked: “Where is the balance to this expansion of institutions without widespread investment and expansion for more adequate, flexible, and responsive home and community care. Where is choice for Ontario citizens? There are groups calling for the abolition of long term care institutions through the investment of other options, and stopping future investments in long term care. See this article by the Disability Justice Network of Ontario which does a comparison between long term care institutions and prisons: https://www.djno.ca/timeline-of-ltc-and-prisons

Different statistics have been shared, but it is safe to say that more than 5,000 people with various disabilities who are NOT older adults are living in long term care institutions in Ontario. This is usually by default, which means there is no other support available. Additionally, we hear about many young adults with developmental disabilities languishing on couches without support, and parents leaving their jobs, because there are no funds to pay a support worker to assist them. Or, they have a $5,000 Passport allotment, which gives them enough funding to pay a support person only 1.5 – 2 hours each week. This is not nearly enough for the majority of people living with a developmental disability, many of whom also have other complex challenges/issues. Some young adults with disabilities go into the long term care system when their families can no longer provide support, or they have no family.

For those who had hoped to do some planning with an independent facilitator to help them create a positive vision for their life and make connections – another individualized approach to living – that option is not available either (unless individuals want to spend half of the $5,000 allotment on planning instead of a support worker).

To summarize and keep it simple: Needed within both Ministries is adequate, portable and flexible individualized funding (no matter the program name or term used). This is true for citizens who need such support – whether in home, health supports and/or supports for participation and contribution outside the home. In addition to increasing budgets for adequate, individualized funding programs, new investments are needed from: 1/ ‘health’ to enhance, expand and transform the home and community care system; 2/ ‘community and social services’ to fund independent facilitation and planning to listen to and assist individuals living with developmental disabilities to move forward in their life, knowing parents will not always be there.

Candidates running in your riding during the upcoming election may be interested in hearing about individualized, and respectful approaches for supporting citizens in Ontario. The results: more flexible, community-think, less institutional think, and healthier, happier citizens!

February 2022

Updates and items to keep in the forefront

Remembering Barb Folke: We were sad to receive the news that Barb Fowke had passed away. Barb supported the work of the Individualized Funding Coalition for Ontario (IFCO) over many years in her various roles as a leader, including as a People First member and President, and as a citizen wanting to give back. Click on the title here to read the article called Remembering Barb Fowke, Speaker, writer, poet, and painter – friend and colleague to many. The article is a reflection about Barb’s contributions to IFCO, including her assistance in the creation of some legacy documents with IFCO and others. This reflective piece ends with two of Barb’s poems. Barb will always be remembered fondly for her poetry, and her kindness to others. Our condolences go out to her friends and family at this time.

IFCO Website Updates: There have been a few things added to the website. This includes a new tab called Events/Gatherings (2021-2022) with links to related documents. And we have started to move our 2021 information from the Home page to a new tab called Messages, News (2021-2022). We are also getting ready to archive some of the older resources but want to do this in a way that ensures they will be easily found. We have been observing that the site continues to be used as a prime location for information and resources. Many of IFCO’s own resources, and others, are downloaded on a regular basis – both old and new. IFCO’s goal with the site has always been to be a relevant repository of information for people, families, agency allies, researchers, students and government – for learning, for affirming, for taking a next step, for activism, for policy development, and for research. Below are links to some good resources. Click on this first link, and scroll to the bottom for international and Canadian resources: https://individualizedfunding.ca/say-yes/ Use this next link for resources by IFCO and partners: https://individualizedfunding.ca/resources/

Coming Together at Virtual Events and Gatherings:

We had a successful Have Your Say event January 19, 2022 with great discussions, ideas shared, and good questions asked. We hope to continue having these virtual gatherings for citizens living with a disability and their communication supports. This is a conscious effort on IFCO’s part to be listening to people with lived experience, those for whom the systems are meant to support. Many thanks to co-chair Kory Earle for his leadership and facilitation, and to those coming out to share their experiences and ideas.
Our Coffee & Conversations gathering held February 16, 2022 also brought forth some good discussion. Participants heard a presentation on developmental services reform by representatives from the Ministry of Children, Community and Social Services (MCCSS). This was followed by a time for questions and answers, conversations and discussions. Many thanks to the MCCSS folks for sharing their time with us, to the participants who put forward good questions, and to the volunteers who have been supporting these gatherings.

Other Work: The IFCO Ad Hoc group is developing a simple model design and graphic based on past work, and common principles and values. We hope to share this with partners, members, friends, and allies soon. We will be reaching out in the near future, hoping to explore some ongoing and newer collaborations.

IFCO Accord, Our Compass: The IFCO Accord can be found at the top of the side bar on each page of our website. The ‘Accord’ continues to provide a solid foundation from which the Individualized Funding Coalition for Ontario draws its direction. It has been and will continue to be our compass.

January 2022

Thoughts for 2022

Taken from the ‘Message from the Individualized Funding Coalition, December 27, 2021.’

Many of us who have been involved in disability issues over the years – like full inclusion and receiving adequate, flexible, individualized funding & support for people with disabilities – are interested in social justice as a whole. And this is the time of year when many citizens think about others in need – people who are marginalized, or people experiencing discrimination. What this message is bringing forward are social justice issues that have been close to many of our hearts throughout 2021.

winter-g8fd7c1294_1920 The Individualized Funding Coalition for Ontario (IFCO) Leadership Group has been sharing in some good discussions with people, families, and allies over the last months. A number of important issues facing people living with disabilities are front and centre.

They are listed here for your thought and consideration.

Ending poverty for people living with disabilities
Human rights and legal capacity: the importance of having choice and control over one’s life
Access to affordable housing and adequate support funding as adult citizens (without long waits)
Ending the systemic discrimination of people living with disabilities
Halting the default to institutionalization of people needing additional supports, especially younger adults living with disabilities, and Seniors who want be supported at home.

Below are excerpts from the IFCO Message dated Dec. 27, 2021 that was sent to members, friends and allies as we approached the New Year. This Message/Newsbrief contained links to articles and information about all of the above topics, some of which were time limited. Below are a few relevant excerpts, highlights and links as per the points listed above.

Ending poverty for people living with disabilities

Disability Without Poverty: The mission of the Disability Without Poverty movement is to get the Canadian Disability Benefit into the hands of people with disabilities as soon as possible. And to have it implemented nationwide without claw backs to people’s existing supports and benefits. Learn more about this movement led by people with disabilities supported by families, friends, service providers, allies and organizations. https://www.disabilitywithoutpoverty.ca/our-movement/

Human rights & legal capacity: the importance of having choice & control over one’s life

Family Managed Home Care (FMHC) and taking away the rights of people with developmental disabilities: In October 2021 various grassroots groups in Ontario put out a call to send letters to Minister of Health, Christine Elliott about changes needed with Family Managed Home Care (FMHC). Some families have shared that in their responses they are being told the Ministry of Health is ‘exploring ways to address these concerns’. This is a bit vague with no guarantees at this point, and why a second round of email letters is needed. Families, whose family members rely on home care, continue to feel incredible pressure and worry. Having to pursue guardianship of their loved one in order to receive self-directed home care support is a big price to pay. What many believe is that guardianship would not only strip their loved ones and friends of their basic human rights, it would leave them more vulnerable into the future.
Legal capacity – a priority for People First of Canada. From their website: “People First of Canada believes that all people, regardless of disability, have legal capacity. People have the right to make their own decisions and choices. The decisions and choices made by a person with an intellectual disability need to be honoured in terms of legal capacity and the authority to act. If a person has a support network or decision-making team, this needs to be honoured in terms of legal capacity and the authority to act on behalf of the person.” To continue reading use this link: Legal Capacity – People First of Canada For more on human rights and legal capacity from People First of Canada, click here: United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) – People First of Canada

Supporting people to have more choice & control over their lives. What IFCO is saying:

ABOUT INDIVIDUALIZED FUNDING: IFCO believes having adequate individualized funding is a part of the solution for some of the concerns facing people living with disabilities today. Self-determination and support for decision making are also key. Having individualized funding (which includes direct funding as one form) means that people can organize and purchase supports that are personalized and tailor-made to their lives. It means choosing one’s own supporters, being supported in your own home option with what you want to do and who you want to live with. It also means having reliable and flexible support for home care.
ABOUT INDEPENDENT FACILITATION: IFCO also believes that having the OPTION of independent facilitation that is funded, available and positioned outside the current systems/agencies (direct service providing agencies and central access places) would be another big part of the solution. Independent facilitation as a role with no strings attached: helps people through a process of strengthening their voice, and making choices – assists within a family context or with others, helps create a vision for life, supports individuals with making different decisions than the system has to offer in the way of menus, and helps to mediate and broker their supports. People living with disabilities are already at a disadvantage within difficult and complicated systems of support in Ontario. They need every opportunity to be heard and to build confidence over time. A skilled independent facilitator assists in this way.

Access to affordable housing and adequate support funding as adult citizens

Systemic Discrimination Against People with Disabilities, A Nova Scotia Example: N.S. Court of Appeal rules there is systemic discrimination against people with disabilities, By Staff – The Canadian Press – October 6, 2021. “Nova Scotia’s highest court has ruled there is systemic discrimination in the province against people with disabilities who are seeking services and housing in the community. In a landmark decision issued today, the Nova Scotia Court of Appeal said the provincial government’s failure to offer people with disabilities “meaningful” access to housing and care is demonstrated by long wait lists . . . . . ” To read the full article click here: https://globalnews.ca/news/8248747/nova-scotia-systemic-discrimination-disabilities-services-housing/

Ending the systemic discrimination of people living with disabilities

What is Ableism? Thoughts to consider: More and more, out in the public eye, is talk of systemic discrimination regarding people living with disabilities. We are also hearing more and more the use of the term ableism in conversations with friends and allies. To understand more about what ableism means, go to this link: What is Ableism? (aoda.ca)

Halting the default to institutionalization of people needing additional supports, especially younger adults living with disabilities, and Seniors who want be supported at home.

Seniors for Social Action Ontario (SSAO): “The mission of this group is to identify alternatives to institutionalization and encourage governments to finance these alternatives with a goal to end institutionalization.” Here is the link to their home page: https://www.seniorsactionontario.com/
The work SSAO is doing offers another example where we, as like-minded citizens, can support each other’s efforts. Their work is relevant today whether you or a loved one in your family need support as an elder now, or would be needing support later! Below is a link to their resources: https://www.seniorsactionontario.com/policyandresearch

A NOTE OF APPRECIATION!

THANK YOU to the individuals, families, and allies who have been participating in gatherings and connecting with us throughout 2021. We thank you ALL for your support of the Individualized Funding Coalition for Ontario (IFCO). Many thanks also to the volunteers who have assisted with our events, future planning, information gathering, partnering and more!

Pictures from Pixabay

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Welcome

The Individualized Funding Coalition for Ontario (IFCO) would like to welcome you to our website. It is our hope that you will find this site helpful for learning more about Individualized Funding and the possibilities it presents for people living with disabilities and for our elders as they face changes in their later years. We are a ‘coalition’ of different members who have lived experience with disability and various forms of individualized funding. We are working together to keep moving Individualized Funding forward in Ontario.

Individualized Funding is a support that assists people with disabilities and others to live an everyday ordinary life because it offers more choice and control. Supporting people to make their own decisions also assists them to live an ordinary life. Below is the IFCO Accord which outlines more fully what we believe.

Our Accord

The Individualized Funding Coalition for Ontario supports the self-determination of persons with disabilities.

We believe in all people having control over decisions concerning where they live, with whom they live, with whom they associate and how they spend their lives.

In order to achieve this we recognize that Ontario must develop a system of funding whereby the person requiring assistance, supported as appropriate by family and/or others, has access to and control over the funds allocated for his/her supports.

Website Information

Thank you for visiting the website for the Individualized Funding Coalition for Ontario. The purpose for this site is to provide information to members and allies about individualized funding and related topics. Most of our own documents available for downloading on the site have been updated with our current email address. There may be a few that have the old information. Please note our current contact information below.

Contact information:
Address: Individualized Funding Coalition for Ontario
c/o 3357 Walker Rd, Suite 2, Windsor, ON N8W 5J7

Email: individualizedfundingcoalition@gmail.com