childhood disability (without) poverty: a national discussion
Friday, May 12th & Saturday, May 13th, 2023
9 AM to 1 PM PT / 12 PM-4 PM ET – both days
Thank you for attending this family-led event that explored the intersection of familial poverty, childhood disability, and health outcomes. We created an opportunity for families, health care professionals, and policy researchers to come together and share both their knowledge and lived experiences on equal footing to identify where we can partner to effect systemic change. Childhood disability is known to have a huge financial impact on families and children.
There is simply not enough data or awareness about the intersection of childhood disability with familial and personal lifelong financial challenges.
We want to change that.
Disability Without Poverty is a movement, led by people with disabilities supported by our families, friends, service providers, allies and organizations. Right now, our priority is to build consensus toward a federal Canada Disability Benefit that would ensure income support above the poverty line for people who live with disabilities.
All times in Pacific Time Zone
Friday, May 12th, 2023
Rabia Khedr / Kyrstin Dumont
Learning from Northern & Indigenous Experiences
Jennifer King / Symbia Barnaby / Alyson Colón
A Discussion about Care Supports
David McDonald / Erika Cedillo / Dr. Eyal Cohen
Body Movement and Well-being Pause
A Discussion about Income Supports
Leila Sarangi / Jennifer Zwicker / Michael Prince
Day 1 Closing
Complete by 1:00pm
Saturday, May 13th, 2023
Welcome to Day 2
Special musical guest: Rattle and Strum from Calgary, Alberta
Learning From Families
Abiodun Odueke / Khadija Zafar / Allana Mullally
A Discussion about Disability & Health Related Supports
Dr. Olaf Kraus de Camargo / Jennifer Baumbusch
Body Movement / Well-being Pause
Learning from What is Working in Other Jurisdictions & Potential Policy Innovations
Catherine MacGillivray / Hubert van Niekerk / Anouk Lanouette Turgeon
What’s Next and Closing
Rabia Khedr is dedicated to equity and justice for persons with disabilities, women and diverse communities. Rabia most recently served as a Board member of Accessibility Standards Canada and the Minister’s Disability Advisory Group and previously served as a Commissioner for the Ontario Human Rights Commission. She is the National Director of Disability Without Poverty and CEO of DEEN Support Services.
A founder of Race and Disability Canada, she is also a board member of the Muslim Council of Peel and a board member of the Federation of Muslim Women.
A motivational speaker and a documentary commentator, Rabia has campaigned in municipal elections to serve as a city councillor in Mississauga. Rabia has received numerous awards for her humanitarian services, including a Queen Elizabeth II Diamond Jubilee Medal. Rabia holds a Bachelor of Arts (University of Toronto) and a Master of Arts (York University).
First Nations Child & Family Caring Society
Jennifer King (she/her) is Anishinaabe of mixed descent with family ties to the Wasauksing First Nation. She has been working in areas of research, policy and public engagement in support of Indigenous women and children for over 15 years. Jennifer has a Master’s degree in social work, with a focus on Indigenous methodologies and Indigenous perspectives on policy and practice. She is passionate about the role of critical education and research in promoting justice, equity and meaningful reconciliation in Canada.
An experienced presenter and facilitator, Jennifer has authored/co-authored several publications on Indigenous issues and has also worked as a sessional instructor in the School of Social Work, University of Victoria.
Symbia Barnaby is an Indigenous woman of Haida and Mi’kmaq descent. She currently lives on the traditional unceded territory of the Coast Ts’msyen People, specifically the Nine Allied Tribes of Lax Kw’alaams. Her traditional Haida name is Guu Gaa Jung and her spirit name is Warrior Woman. She is a single mother of 6 children (5 of which have neurodevelopmental disabilities). She is trained as a Practical Nurse and a Reiki Level 3 Practitioner. Symbia is a fierce community inclusion advocate. She is also a storyteller, a filmmaker, and a Wisdom Translator.
Symbia volunteers with several community based organizations aimed at supporting the healing of generational and systemic trauma. She has developed and run workshops on decolonization, anti-racism, health equity, inclusion, disability and intersectionality. She also consults on projects with various agencies and individuals wanting to understand equity, policy and protocols through an Indigenous lens with her business called Healing Nation Coaching and Consulting.
David joined the Canadian Centre for Policy Alternatives (CCPA) as its Senior Ottawa Economist in 2011, although he has been a long time contributor as a research associate.
Since 2008, he has coordinated the Alternative Federal Budget, which takes a fresh look at the federal budget from a progressive perspective. David has also written on a variety of topics, from child care to income inequality to federal fiscal policy. He is a regular media commentator on national policy issues, often speaking to the CBC, Globe and Mail, Toronto Star and Canadian Press.
Dr. Erika Cedillo
Director of Public Policy and Programs, Inclusion BC
Erika joined Inclusion BC in the summer of 2018 as a Community Inclusion Advocate, and she became the Director of Public Policy and Programs in May 2020. Erika has been a strong, effective advocate and support for families in her community and brings a collaborative and solutions-based approach to her work. Erika has a Ph.D. in Law from the Peter A. Allard School of Law at the University of British Columbia, a Master’s Degree in Administration, Finance and Corporate Law from Universidad Humanitas (Mexico) and obtained her Law Degree from Tecnologico de Monterrey (Mexico). Outside of work, Erika enjoys being with her family, spending time in nature, and a good run to clear her mind.
Alyson Colón has a master’s degree in Gender and Women’s Studies from the University of Toronto, and has experience connecting policy makers and industry leaders with leading research on gender and inclusion.
Alyson is a Research Associate with the Nunavummi Disabilities Makinnasuaqtiit Society (NDMS) and is heading the first territory-wide study in Nunavut that specifically looks at the experiences of people with disabilities and their families. Prior to joining NDMS Alyson worked at the University of Toronto for 12 years, most recently as Associate Director for the Institute for Gender and the Economy, at the Rotman School of Management. She also brings more than 10 years of experience in nonprofit management.
Catherine is a physiotherapist who has primarily worked in the pediatric disability area of care since graduating from the University of Queensland in 2016. She worked in Australia when the NDIS was being rolled out and saw the positive impact this program had on families.
Catherine has also worked with kids in New Zealand, Canada and the UK and has experience in both public and private sectors. Outside of work, Catherine has been volunteering with Every Canadian Counts to help advocate for a system that takes care of all disabled people across Canada.
Dr. Olaf Kraus de Camargo
Associate Professor in the Department of Pediatrics at McMaster University
Dr. Olaf Kraus de Camargo is an Associate Professor in the Department of Pediatrics at McMaster University. He completed his medical education and pediatric training in Brazil, followed by a residency in Germany where he received training in developmental-behavioural pediatrics and child neurology.
Prior to joining the faculty at McMaster, Dr. Kraus de Camargo held positions in Germany as a Professor of Social Medicine at the University of Applied Sciences Nordhausen and as CEO and Medical Director of Kinderzentrum Pelzerhaken gGmbH, an inpatient and outpatient facility for children with developmental-behavioural disabilities and chronic neurologic disorders.
Dr. Kraus de Camargo is the co-director of the CanChild Centre for Childhood Disability Research and a member of MacART (McMaster Autism Research Team). He practices as a developmental pediatrician at the Ron Joyce Children’s Health Centre in Hamilton, Ontario.
Since 2001, Olaf Kraus de Camargo has been involved with the implementation of the WHO – International Classification of Functioning, Disability and Health (ICF). He co-edited the book ICF: A Hands-On Approach for Clinicians and Families. He is a member of the steering committee of PONDA – Physicians of Ontario Neurodevelopmental Advocacy and a member of the Disability Advisory Committee to the Canadian Revenue Agency.
I’m a Polish born Pakistani Canadian Muslim woman with a Master’s in Education. I’m a mother of three and a lived experience caregiver to a child with disability.
My hope is to bring change through education, outreach and lived experience. I’m passionate to bring change for our children and youth with disabilities through research, culturally comprehensive and educational workshops, community conversations and ongoing advocacy to make our society accessible and inclusive for all children and youth no matter the disability.
RN, PhD, FAAN, FCAN
Jennifer is a Professor at the School of Nursing at the University of British Columbia.
Jennifer leads a research program focused on improving person- and family-centered care for older people and people with disabilities. During the pandemic, she has been conducting research about the impact of public health measures on families of children with medical complexity.
Anouk Lanouette Turgeon
Anouk Lanouette Turgeon is a mother of two beautiful children: Éli, who lives with Down Syndrome; and Lhassa, who gave the world the most beautiful smiles in human history before she died from a very rare genetic progressive disease (KIF1A) on November 15th 2019 at age 5. These 2 extraordinary human beings forced her to want a revolution – and to work very hard to make the world a better place.
With Parents jusqu’au bout, she advocated for a decent financial support for families with a severely disabled child. The small and mighty group of 4 mothers fought relentlessly hard and obtained the creation of the Supplement for Handicapped Children Requiring Exceptional Care (approximately 1100$ a month for eligible families) from the provincial Québec government in 2016.
Anouk has a bachelors’ degree in Writing and Communication; a diploma in translation; a certificate in Immigration and Interethnic relations. She works as an employment counsellor for people living with an intellectual disability or autism. She is also an author: her first novel was published in September 2021 (Une vie fretless ou comment j’ai accouché d’une méduse, XYZ).
Dr. Eyal Cohen
Dr. Eyal Cohen received academic training at the University of Toronto (medicine) and McMaster University (health research methodology), and clinical training at The Hospital for Sick Children (SickKids) and the Children’s Hospital at Westmead in Sydney, Australia. Dr. Cohen co-founded the Complex Care Program with his colleagues in the Division of Paediatric Medicine at SickKids. He is currently the Program Head of Child Health Evaluative Sciences at SickKids Research Institute and Co-Executive Director of the Edwin S.H. Leong Centre for Healthy Children.
Dr. Cohen is a Professor of Paediatrics and Health Policy, Management and Evaluation at the University of Toronto. He is also a Scientist with the CanChild Centre for Childhood Disability Research at McMaster University and an adjunct scientist at ICES. Dr. Cohen serves in a number of advisory roles for the Provincial Council of Maternal and Child Health, BORN Ontario, and the Ontario Public Drug Program.
Allana Mullally lives on Prince Edward Island with her 4 children including two diagnosed with Autism and one with a rare disorder who is medically complex.
She lost her husband, the father of her children, in a motor vehicle accident in August 2020, and has been a solo parent ever since. She understands the barriers to employment faced by solo parents and the ensuing financial instability when trying to keep up with the extraordinary costs of her children’s support needs. Allana is also an active member of the Maritime Children Hospice Society, working on the goal of creating a respite/hospice home in each Maritime province. She believes that supporting caregivers and giving them “free time”
will be beneficial in the long term by helping them to be more mentally stable, have more energy, and give back to themselves what they deserve.
Allana wants to contribute whatever she can so families don’t have to face the same struggles and she believes that a wealthy country like ours should be supporting all children and families to thrive including children with health complexities.
Hubert van Niekerk
Hubert van Niekerk has a long history of working, advocating and volunteering in the disabled community. He has been involved with the Ontario Association for Developmental Education for 19 years serving as a member-at-large, president and past president. Hubert served as the president for the Council for Exceptional Children in London-Middlesex. He is on the board of directors for L’Arche London.
At the age of 48 Hubert went to university and became a teacher for 17 years as a special education high school teacher working mostly in a self-contained classroom teaching students with a wide range of intellectual, medically fragile and physical disabilities. Hubert also engaged in a year-long teacher work exchange to Australia for the year of 2010.
Hubert is the current Vice-chair for Every Canadian Counts which is advocating for a publicly funded national disability insurance plan for all persons with long term and chronic disabilities.
Michael J. Prince
Michael J. Prince joined the University of Victoria in 1987, as the inaugural Lansdowne Professor of Social Policy in the Faculty of Human and Social Development. He is also an adjunct faculty member in the Department of Political Science in the Faculty of Social Sciences at UVic.
An active volunteer, Michael is currently a member of the social policy committee to the Council of Canadians with Disabilities, the income security advisory committee to Inclusion Canada, and a member of the Registered Disability Savings Plan (RDSP) Action Group to the Ministry of Social Development and Poverty Reduction, Government of British Columbia.
Since 2018, he has been the board chair of Community Living BC, a provincial Crown corporation providing supports and opportunities for adults living with developmental disabilities.
Since 2020, Michael also serves on the Ministerial Disability Advisory Group to the Honourable Carla Qualtrough, Minister of Employment, Workforce Development and Disability Inclusion, Government of Canada.
Abiodun Odueke is a mom to an Autistic boy and has experienced firsthand the difficulties in assessing childcare. She is currently a Community Liaison for the Family Resource Network at the Calgary Immigrant Women’s Association and a member of the National Advisory Council on Early Learning and Childcare.
Within the past years, she has coordinated an early learning program for immigrant parents and children, worked as an Early childhood Educator and advocated for inclusive programs in Calgary. She is passionate about making ELCC inclusive and accessible to all Canadians and connecting people with programs, resources, and services.
Director, Social Action / National Director, Campaign 2000 at Family Service Toronto Researcher
Leila Sarangi is the Director of Social Action at Family Service Toronto and the National Director of Campaign 2000, a pan-Canadian movement working to end child and family poverty. With 25 years of front line, research and policy experience, Leila has learned that the people experiencing systemic marginalization can be the furthest away from decision making. Her professional experience demonstrates commitment to connecting lived reality with public policy, advocating with and engaging people in a meaningful way to inform policy and legislative changes.
Leila began her career working in homeless and violence against women’s shelters across Toronto. Her community-based research has taken her into diverse low-income neighbourhoods across Toronto, and as far as rural India. As a community builder, she has worked intentionally to create spaces for people with lived expertise of poverty and violence to direct and participate in social actions of all kinds. She uses an intersectional gender equity framework to think critically and strategically, work with diverse communities, engage the media, and successfully impact public policy and legislation.
Leila is a recognized leader in influencing the City of Toronto to commit to integrating an intersectional gender analysis to its budget process and policy work. Her long-term efforts, which included facilitating the participation of over 2000 diverse low-income women and gender-diverse people in the public process of developing Toronto’s Poverty Reduction Strategy, contributed to the creation of the City’s Equity Budgeting Review process and the Gender Equity Strategy and Gender Equality Office at the City of Toronto.
In addition to her gender equity work, her social action leadership and research experience spans a variety of issue areas including poverty elimination, housing and homelessness, gender-based violence, police accountability and immigration. Leila holds a Specialized Honours Degree in Women’s Studies from York University.
An avid city cyclist, Leila lives, volunteers and raises her three children in Parkdale, Toronto.
Dr. Jennifer Zwicker
Dr. Zwicker is Director of Health Policy at the School of Public Policy, associate professor in the Faculty of Kinesiology, University of Calgary, Canada Research Chair (II) in Disability Policy for Children and Youth and Deputy Scientific Officer for Kids Brain Health Network. Her research program assesses interventions and informs policy around allocation of funding, services, and supports for youth with disabilities and their families. Strong stakeholder and government collaboration has been critical in the translation of peer-reviewed publications to policy papers, op-eds and briefing notes for provincial and federal ministries and senate committees.
Her work recently informed the Canadian Academy of Health Sciences National Autism Strategy Working Group and Royal Society of Canada Expert Working Group to develop disability inclusive policy during the COVID-19 pandemic. She has been recognized for her policy leadership as an Action Canada Alumni, Governor General Leadership Forum, and Canada’s Top 40 Under 40.
Kelly Foxcroft-Poirier čiiʔiłumqa (she.her) is a disability mom raising three creative amazing kiddos living on her traditional Tseshaht Frist nation territory in tsuumʕas (Port Alberni).
Kelly is a lifelong learner and expander, working in the spirit of lifting each other up through her work as a facilitator, educator, graphic recorder, cheerleader, artist and maker of snacks. With a huge amount of humour and even more humility, Kelly aspires to arrive to all work in a way that is human centred, hope oriented and moves us towards the collective liberation and healing work of being a good ancestor to the earth and our grandchildrens grandchildren. čuuch!
Amanda Lockitch juggles multiple jobs in addition to keeping her family on track and being primary caretaker for her autistic son. She organizes arts events and writes, and assists the writing, of Op-Eds and blog posts for Disability Without Poverty, among other tasks.
With her background in theatre and film, Amanda coaches actors for auditions, teaches young people speech and drama, and works with adults on their public speaking skills, from writing to presentation. When she is not doing that, she loves taking long walks with her family, reading books, having at-home dance-parties, and relaxing in a bathtub with a mud mask.
Brenda Lenahan is mom to a young son with health complexities who has inspired her involvement in advocacy, research, and her home based business selling adaptive outdoor recreation equipment.
She co-founded the grassroots group BC Complex Kids, in an effort to bring forward a collective family voice for systemic change & access to equitable supports for kids with health complexities.
Brenda works on various research projects and initiatives in hopes that one day the research can inform needed policy changes. She recently was appointed to the National Advisory Council on Early Learning & Child Care as a caregiver and is on the Minister’s Advisory Council for Children and Youth with Support Needs in BC.
In her role on the Disability Without Poverty leadership team, she has witnessed the united efforts to bring policy change for disabled adults and now aims to support a united movement in support of children with disabilities.
Brenda has an optimistic heart and hopeful vision of an equitable future for her son and all persons with disabilities in Canada.
Kyrstin Dumont is a Knowledge Keeper, and a passionate and caring young woman and proud band member of the Algonquins of Kitigan Zibi.
She has been awarded 3 times for her work within and outside Indigenous communities. Kyrstin has won the CBC Trailblazer award, the June Girvan award, and the youth Ottawa RBC Spirit of the Capital Take a Stand Award.
She has taken part in sacred walks to protect the water, and has spoken on Parliament Hill about climate justice and human rights. She has spoken in the House of Commons about the Missing and Murdered Indigenous Women and Girls genocide in Canada.
Kyrstin has worked with organizations, churches and schools such as the Ottawa Catholic and Carleton school boards, Project of Health, the Child Welfare League of Canada, UNICEF Canada and the Kitchissippi [kitch-i-SIP-ee] Church and Woodroofe church, all while pursuing her post-secondary education.
Kyrstin works as a strong role model for other students who have fallen through the cracks of mainstream colonial education systems. She is an advocate, educator, and a mentor to her family and community alike.