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.
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!
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.
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.
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
Direct Funding Can Enhance Home Care for Elders
By John Lord, December 7, 2021, Seniors for Social Action Ontario
There is growing interest among senior’s advocates for direct individualized funding to be a key component in a transformed elder care system. Directly-funded home care is an option that many elders need and want.
In most home care programs, people receiving support have little say about who or when staff come into their home. Many elders have expressed frustration with not being able to influence the way their personal supports are provided. It is also not unusual for home care recipients to have several different workers coming in and out of their home.
Direct funding provides government funds directly to the person needing support or to the family. The person/family can then choose who will provide support to them as well as when and how that assistance will be utilized. The recipient of direct funding can self-manage (hire, provide direction, deal with payroll) or they can assign those roles to another person or an agency. Direct funding also expands workforce capacity since people can hire neighbours and others in their network.
People with disabilities and their allies have long been advocates for direct funding. All provinces now have some form of direct funding for people with physical or developmental disabilities. Few of these programs are comprehensive and most do not fulfill all the support needs of disabled citizens. Nevertheless, with forty years’ experience with direct individualized funding, much has been learned that could benefit home care for elders.
To continue reading the entire article, you can link to the pdf document here: Direct Funding Can Enhance Home Care for Elders
To learn more about Seniors for Social Action Ontario (SSAO), go to their website: https://www.seniorsactionontario.com/
Picture from Pixabay
Reflections: Past and Present, Fall 2021
The Individualized Funding Coalition for Ontario’s Leadership Group has had some good conversations and gatherings over the last few months with: people and families; independent facilitators, partners and allies; executive directors and provincial leaders, and the Ministry of Children, Community and Social Services (MCCSS). Many thanks to the leaders who have helped us – you know who you are! It has been a busy and productive time.
For many of us, it has also been a time of remembrance. Given all that we have seen and experienced in the last months, we are also remembering key leaders who have passed away. As we wrestle with this new environment where hopes for social justice and pro-active reform abound, those who worked with the Individualized Funding Coalition for Ontario (IFCO) for change are being deeply missed.
Malcolm Jeffreys, Judith Snow, Peter Dill, Beth French, and Richard Ruston are names that keep coming up as we reflect about what IFCO accomplished and learned because of each of these amazing leaders. Their courage, innovation, commitment, and wisdom were predominant within ‘our’ movement to enhance citizenship, self-determination, inclusion, and the use of individualized funding to increase choice and control for people living with disabilities. . . . You can continue reading this article and the entire Fall News Brief at this link: https://individualizedfunding.ca/messages-news-2021-2022/
April 2021 News
Why Ontario doesn’t need ‘more’ institutionalized supports for seniors and others living with disabilities
For decades the Individualized Funding Coalition for Ontario (IFCO) along with many other provincial organizations, service agencies, people and families have supported the closure of institutions for people with disabilities. They have done this knowing there are other options that can provide what is required for people to be successfully supported. This meaning: viable alternatives and supports in people’s homes, neighbourhoods, and communities. . . . To continue reading this message and to read the information alert/report from Seniors for Social Action Ontario (SSAO) and a paper on the work being done in Denmark, click here.
A Message from the Co-Chair for 2021 (and beyond)
Individualized Funding Models Do Work
By Yona Frishman
It is with great excitement that I share with you my recently acquired knowledge about a comprehensive study on individualized funding.
The study is called: Individualized funding interventions to improve health and social care outcomes for people with a disability: A mixed‐methods systematic review
- This study is a review of 73 studies on individualized funding for people with disabilities.
They include 4 quantitative studies, 66 qualitative and 3 based on a mix-methods design.
- The data refers to a 24 – year period from 1992 to 2016, with data for 14,000 people.
- The review authors searched for studies up to the end of 2016. Studies that were carried out in Europe, the US, Canada and Australia.
- This review was published in January 2019.
The aim of this review was to examine the effects of individualized funding on a range of health and social care outcomes. . . . . To continue reading this message and to learn more about
the research and the authors, click here.
Pictures from Pixabay
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.
The Individualized Funding Coalition for Ontario supports the self-determination of persons with disabilities.
We believe that all people should have 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 significant others, has access to and control over the funds allocated for his/her supports.
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.
Address: Individualized Funding Coalition for Ontario
c/o 3357 Walker Rd, Suite 2, Windsor, ON N8W 5J7