THE SCHOOL OF PUBLIC POLICY’S DISABILITY DATA PROJECT
DR. JENNIFER ZWICKER DIRECTOR OF HEALTH POLICY STEPHANIE DUNN & BRITTANY FINLAY RESEARCH ASSOCIATES
NEEDS ASSESSMENT INFORMS RESEARCH AND POLICY • Policy and interventions have been designed to address high prevalence physical disability and disabilities related to aging
Costs are from age 2, not from onset in one’s 60s
• Developmental disabilities are lifelong conditions • Inverted support pyramid– parents looking after kids in adulthood • Need to take a lifespan perspective
https://i.ytimg.com/vi/y40YZLIaHoo/hqdefault.jpg
Stephanie Dunn and Jennifer Zwicker
POPULATION DATA IN CANADA National data is inadequate for children and youth with disabilities
DEVELOPMENTAL TRAJECTORIES CAN INFORM POLICY
Common age of diagnosis
Ages and stages questionnaire is a screening tool that can early identify children at risk of developmental delay (Lamsal, Dutton and Zwicker, BMC Pediatrics 2018)
DESCRIBING UNMET NEEDS FOR PERSONS WITH DEVELOPMENTAL DISABILITY Return on investment in human capital according to age
Findings from the Canadian Survey on Disability, 2012 Persons with developmental disability aged 1564 (also looked specifically at ASD and CP) Education outcomes • 50% did not complete high school • 30% completed high school • 20% completed post secondary •
65% not in the labour force
•
Mean personal income $15,700
•
Mean employment income $16,500
Zwicker et al. 2017, Research in Developmental Disabilities
LABOUR FORCE PARTICIPATION 100 90 80 70
63.4
60 50 40 30 20
45.2 34.5 21.5
24.1 14.3
10 0
5.4 Labour force participation All disabilities
Employment Developmental Disability
7.3
6.8
Unemployment ASD
Zwicker et al. 2017, Research in Developmental Disabilities
SUPPORT FOR ACTIVITIES OF DAILY LIVING Provision of support
Over 70% of persons with developmental disability need help that was not received for at least one need Zwicker et al. 2017, Research in Developmental Disabilities
“We are impacted by the inability to secure our son’s future. We are his sole social circle, we are his financial backers, we are his transportation — we are his life. My fears keep me awake at night. If we don’t have something in place — a plan, a program, a support network — what will happen to my son when I’m gone? Institutionalized, neglected, or worse, homeless, with no love or supports — I need peace of mind and he needs a future.” – Parent statement for Senate Standing Committee
ADDRESSING UNMET NEEDS OF PERSONS WITH DISABILITIES “The true measure of a nation’s standing is how well it attends to its children, including their health, safety, material security, education and socialization and their sense of being loved, valued and included in the families and societies into which they are born” – UNICEF, Innocenti Report Card 2007
“We agree that there is much scope to improve the current patchwork of federal, provincial and territorial benefits and services. Work needs to be done at both levels of government to reduce the fragmentation of our supports and services” – IN UNISON a 1998 report from provincial ministers responsible for social services
• • • • •
Federal legislation as contributed to the equality of rights of Canadians with disabilities: Canadian Charter of Rights and Freedoms Canadian Human Rights Act Employment Equity Act UN Convention on the Rights of Persons with Disabilities Federal government is developing accessibility legislation with the objective to “eliminate systematic barriers and deliver equality of opportunity”
First step in polices for efficient and equitable services for those with DD is a better understanding of needs and challenges
INCOME SUPPORTS: THE DISABILITY TAX CREDIT (DTC) • Persons with disabilities and their caregivers face higher costs than those without disabilities • The DTC is a key federal support for individuals with severe disability A non-refundable tax credit designed to provide tax relief for non-itemizable (or hidden) disability- or therapy-related costs Administered by the Canada Revenue Agency (CRA) Can be claimed by the individual with the disability and can also be transferred to an eligible caregiver
FINDINGS: DTC TAKE-UP IS LOW Policy Paper
Op-ed
LOW DTC UPTAKE HAS BROADER IMPLICATIONS BEYOND THE CREDIT
RECOMMENDATIONS: IMPROVE ACCESS & USE OF DISABILITY SUPPORTS 1. Increase available information, including better data on target population 2. Improve administration of the DTC a) Implement a clear and transparent review and appeals process b) Consider a new disability assessment process for disability benefits, decoupling eligibility for other important benefits from the DTC
3. Improve support for individuals with disability living in low income
Senate Standing Committee on Social Affairs, Science and Technology
Disability Advisory Committee
NEXT STEPS: HOW DO PROVINCIAL GOVERNMENTS SUPPORT PERSONS WITH DISABILITIES ACROSS CANADA?
DISABILITY DATA PROJECT: RATIONALE The UN Convention on the Rights of Persons with Disabilities (CRPD) Committee noted concern that Canada “does not have up-to-date quantitative and qualitative data on the situation of persons with disabilities” and recommended that Canada “systematically facilitate the collection, compilation and updating of data and statistics on persons with disabilities”
DISABILITY DATA PROJECT: RESEARCH QUESTION AND AIM Research question: How do federal and provincial governments support persons with disabilities across Canada? Aim: To collect data on direct expenditure on disability-related benefits and programs (income supports and services) across all provinces, as well as federally from 1999/2000 onwards
ANALYSIS PATHWAYS How do supports compare across provinces? What are the implications of differences?
METHODS • Expenditure information we are collecting: o Disability social assistance (like AISH) o Disability services o o o o
Disability supports (PDD) Employment supports Family supports (respite, caregiving) Child supports (like FSCD)
o Tax measures (eg DTC, RDSP)
• Sources of this information: o Public accounts o Budgets and annual reports from the ministries of education, community services/social affairs and finance o Freedom of information requests to relevant government departments o Collaboration with provincial ministries
LEVEL OF SUPPORT
LEVEL OF SUPPORT
HOW DOES THIS COMPARE TO OTHER COUNTRIES?
DESIGN & DELIVERY MECHANISMS
PROGRAM DESIGN Family with a child with disability in Alberta in 2016 (excludes FSCD)
Single young adult with disability in Alberta in 2016
POSSIBLE USES OF DATABASE • Monitoring framework for policies and programs & comparisons with other jurisdictions Budget monitoring to promote the rights of persons with disabilities (as per Article 31 UN CRPD) Budget analysis for issues such as accessibility, support for persons with disabilities, inclusive education, medical services, social protection and national monitoring mechanisms
• Evaluating current and proposed policy solutions – for example, a disability insurance system to replace the patchwork system of income supports across the country
DISABILITY DATA PROJECT: POLICY THROUGH COLLABORATION • We are interested in developing a Disability Policy Collaboration, bringing together stakeholders to: Aim: develop effective, research-informed and practical public policies designed to reduce barriers and improve outcomes for Canadians with disability, in line with UN Convention on Rights of Persons with Disabilities Collaboratively develop a research agenda based on both our database and needs of the community. For example, this includes: - Discussing ways to improve the state of disability data in Canada and brainstorm pathways forward - Developing relevant and timely research questions, some based on our database
Annual policy roundtables to bring researchers together with members of the Disability Policy Collaborative to discuss the results of our research, disseminated knowledge and influence policy.
OUR TEAM IS EMBEDDED IN COLLABORATIVE NETWORKS
THE SCHOOL OF PUBLIC POLICYUniversity of Calgary Downtown Campus 906 8th Avenue S.W., 5th FloorCalgary, Alberta T2P 1H9
PERSONS WITH DEVELOPMENTAL DISABILITY 1.4
DD
ASD
1.2 1 0.8 0.6 0.4 0.2 0
15-64 years (%)
15-24 years (%)
25-44 years (%)
45-64 years (%)
Zwicker et al. 2017, Research in Developmental Disabilities
RIGHTS IN THE UN CRPD • • • • • • • •
Equality before the law without discrimination (article 5) Right to life, liberty and security of the person (articles 10 & 14) Equal recognition before the law and legal capacity (article 12) Freedom from torture (article 15) Freedom from exploitation, violence and abuse (article 16) Right to respect physical and mental integrity (article 17) Freedom of movement and nationality (article 18) Right to live in the community (article 19)
• • • • • • • • •
Freedom of expression and opinion (article 21) Respect for privacy (article 22) Respect for home and the family (article 23) Right to education (article 24) Right to health (article 25) Right to work (article 27) Right to adequate standard of living (article 28) Right to participate in political and public life (article 29) Right to participation in cultural life (article 30)
ADULT DISABILITY SERVICES
CHILD DISABILITY SERVICES