Feature Issue on Transition in a Global Context for People with Intellectual, Developmental, and Other Disabilities

Inés Escallón

Over the years, families of individuals with intellectual and developmental disabilities (IDD) have promoted and achieved many of the positive changes that we see today in the lives of their family members and in society at large. They have worked relentlessly so their sons and daughters have the needed supports to be included in the community and recognized as contributing citizens at every stage of their lives. And yet, these contributions and solutions emerging from family grassroots groups are often not widely known or are taken for granted by governments, provider agencies, and society.

Research on families tends to ignore families of children with disabilities, and research on disability tends to ignore families. In the case of children with IDD, families are particularly important because they may be required to play a support role for the entire life of their family member.

In Canada, family-led organizations started 70 years ago promoting the inclusion of their family member with intellectual disability. They were strong advocates during the development of the United Nations Convention on the Rights of People with Disability (CRPD) and they continue to work towards a more inclusive and equitable society for all. We see more and more people with IDD in regular schools, living in the community, making their own choices, and working in regular jobs. We also know there is still a long way to go.

Our beginning

Established in 2018, the Family Support Network for Employment (FSNE) is a family-led coalition advocating for systemic change to improve employment opportunities and jobs for individuals with IDD facing high employment barriers in Ontario. FSNE strives for employment for all, regardless of disability, by supporting families to become “critical thinkers” in employment. Long-term employment in the general workforce for people with intellectual disability is possible, practical, and sustainable.

With funding from the Ontario Ministry of Children and Community and Social Services, FSNE conducted a global study of effective policies and best practices in 2018. The study used evidence-informed research and it was the first study in Ontario to include individuals with intellectual disability, their families, service providers and employers.

FSNE provides individuals with IDD and their families with information, knowledge, and advocacy skills to support the needed transformations and opportunities to access employment.

We developed a free online course, Learning Path to Employment at bit.ly/3LvlMXm to provide individuals with IDD and their families the knowledge and tools they need to advocate for, and secure, meaningful paid employment. We also designed a survey (www.surveymonkey.com/r/TS7ZJBJ ) to measure the current state of employment for individuals with a developmental disability in Ontario.

FSNE supports practices known as the Consultive Selling Model, which focuses on employment service providers building relationships with both employers and job seekers, and Third-Party Representation support, which involves a trusted professional understanding the employer’s needs and presenting motivated, reliable, and dependable jobseekers who would not have been considered by the employer because of unconscious biases.

Our philosophy

Employment is a foundational aspect of adult life for many people, and in our view, it is the gold standard for inclusion. Disability groups, including ours, advocate for a life path for people with IDD that closely resembles the one for their peers without disabilities. Thus, employment in the general workforce must be the first and preferred outcome of publicly funded services for all working age citizens with disabilities, regardless of level of disability. Employment creates socially valued roles, promotes the development of social networks, and contributes to a community’s recognition of an individual as an adult. An employment-first framework positions access to employment in the community as a human right. This supports the implementation of best practices in the education system and in government funding and programming, and the provision of employment supports in Ontario.

In Ontario, despite large investments being made over the years by governments and non-profit organizations to serve individuals with disabilities, the current system directs them to traditionally-funded programs, such as sheltered workshops, day programs, ODSP (Ontario Disability Support Program, a public support system), volunteer opportunities, congregated and segregated classes, and activities targeted exclusively to individuals with a disability.

Employment programs have focused on preparing job seekers to overcome their individual barriers to employment, while not addressing the underlying systemic issues. Specifically, job readiness programs do not address that the candidates are motivated, reliable and dependable, but lack access to employers. These programs also fail to address false perceptions and unconscious biases from employers and agency staff. The system traps people in a perpetual revolving door of training programs that have demonstrated poor employment outcomes.

The majority of adults with intellectual disability who work in sheltered workshops would prefer to work in competitive employment, and their families do as well (Migliore, 2016). Yet, fewer than 2% of adults with intellectual disability are referred annually to the Ministry’s employment supports (ODSP, 2019), and employment agencies continue to use strategies that yield poor outcomes. This is why unemployment rates for people with IDD are consistently far higher than those for people without disabilities.

Family members, including extended families and other unpaid supports, are critical stakeholders in leading the employment-first journey. If families have a genuine expectation of employment from the early years, they will support inclusive education, provide job opportunities at home, pursue employment goals set out in individualized education plans (IEPs), and help their family member find summer and part-time work during the school year. It is more likely their son or daughter will gain inclusive employment.

It is also well known that having a paid job during the school years is the prime indicator of an individual having a paid job after finishing their school years (Cobb, 2013).

It is through the lived experiences of real families that one can begin to recognize how public policies and government- funded initiatives affect the conditions under which private entities like families operate. Individuals with IDD and their families need to be consulted and heard on issues that affect their lives.

Individuals with IDD face higher employment barriers and are typically left out of employment services because of systemic failures that occur because of low expectations and government policies that are not inclusive nor based on employment-first principles. Other causes include funding structures that target those with the least barriers, unconscious biases from employers, and practices that do not meet support needs.

The tools and supports necessary to create effective, sustainable, and high-outcome employment services for individuals with IDD who face higher employment barriers, are well-known. Implementation remains sporadic in Ontario, however, so families once more are called to lead the change.

Our future

We’re working to become the disrupter on community employment in Ontario, supporting all stakeholders, policymakers, government, educators, employment service providers, employers, families, and individuals with IDD. The priorities are supporting the government to design and implement an employment system based on employment-first principles; assisting employment service organizations to serve job seekers with the most significant employment barriers to those with the lowest; spurring educational institutions to rethink their role in preparing students with and without disabilities for jobs of the future; and supporting employers to change their perceptions and biases about job seekers with IDD.

If a sustainable, unified common voice on employment exists in the community, families will be able to effectively advocate for the changes required in policies, funding, and practices to develop a more inclusive model of employment in the province. FSNE is that unified voice.

References

Migliore, A., Mank, D.M., Grossi, T.A., & Rogan, P. (2016). Integrated employment or sheltered workshops: Preferences of adults with intellectual disabilities, their families, and staff. Journal of Vocational Rehabilitation, 26, 5-19.

Cobb, R. B., Lipscomb, S., Wolgemuth, J., Schulte, T., Veliquette, A., Alwell, M., Batchelder, K., Bernard, R., Hernandez, P., Holmquist-Johnson, H., Orsi, R., Sample McMeeking, L., Wang, J., and Weinberg, A. (2013). Improving Post-High School Outcomes for Transition-Age Students with Disabilities: An Evidence Review (NCEE 2013-4011). National Center for Education Evaluation and Regional Assistance, Institute of Education Sciences, U.S. http://ies.ed.gov/pubsearch/pubsinfo.asp?pubid=NCEE20134011.

Office of the Auditor General of Ontario. (2019). Agency annual report, Ontario Disability Support Program. https://bit.ly/3c7RuOk.

Related Content

It’s Not What You See | This video explains the consultive selling and third-party representation models of support for which FSNE advocates.