Adulting, but Way More Complicated
Entering adulthood is a tumultuous period, filled with uncertainty and obstacles. You are suddenly burdened with having to schedule you own medical appointments, making seemingly life-changing choices, and making sure that that was the last time you paid rent a couple of days late. Early adulthood is a time filled with stupid decisions, making what feels like an endless number of mistakes and, ultimately, exploring who you are.
However, for people with disabilities, along with their families or caregivers, entering adulthood is complicated further by barriers to needed support systems. For people with disabilities, adulthood doesn’t seem to hold the same type of excitement as it does for neuro-typical individuals. Many families and caregivers receive inconsistent information and suffer financial and social hardship, as they manage their child’s transition into adulthood. Often, parents and caregivers perceive adulthood as a black-hole: a terrifying abyss of inadequate or limited services and inaccessible government supports. While they may have a support worker, parents and caregivers often find that they have to become tireless advocates for their child, in order to receive requisite support and services. The excitement about finally becoming an adult is overridden with anxiety and uncertainty about the future. This is a common theme not just in Alberta, but also across Canada: many people with disabilities report feeling extreme trepidation about entering adulthood, due to an absence of support and the inaccessible nature of assistance programs.
I am writing from personal experience. My brother, who has autism spectrum disorder, was kept in high school for an extra year and graduated at the age of 19. My parents made this decision so that we would have extra time to prepare for and understand the complex system of adulthood support programs. I watched as my parents worked tirelessly, day and night, to find the appropriate supports for my brother before his high school graduation. My mother became incredibly skilled at navigating the maze of disability supports and programs. She is my brother’s biggest advocate.
In Alberta, adults with disabilities have access to two primary government financial supports, after turning 18. Assured Income for the Severely Handicapped (AISH) and Persons with Developmental Disabilities (PDD) are both heavily regulated by the Alberta government: both have strict eligibility criteria and only provide financial support. The rationale behind the criteria and financial support systems is entrenched in neoliberal ideals. Neoliberalism is defined by principles of individual initiative, market-based competition, and the free flow of global goods, services, and capital.1
Neoliberalism maintains that the solution to the fiscal crisis is a shift in power structures, such as giving state responsibilities to the free market.2 With the market in power, neoliberalism makes individuals accountable for their own financial independence and economic freedom.3 In Alberta, neoliberal ideals intensified with the election of our former premier, Ralph Klein, and the Alberta Progressive Conservatives party – who, in 1992, went on to implement and reform various social policies.4
Neoliberal social policies have exacerbated systemic oppression and the stigmatization of adults with disabilities. Neoliberal welfare state programs focus on individual responsibility and autonomy.5 Their preoccupation with cost reductions has led to the creation of strict eligibility criteria; these determine whether an adult with a disability is deserving of government funding, due to an inability to obtain and sustain employment. Restrictive criteria have left many ineligible adults with disabilities in limbo, without any government support.
For instance, the criterion of having an IQ score of 70 points or lower, as outlined in the PDD’s eligibility criteria, leaves many adults with disabilities without support. Many individuals with autism spectrum disorder score well beyond 70, and therefore are denied the much-needed financial support. Not only are they not given any subsidy, but also they are often denied government supports, such as an individual service plan which might include employment supports and community living supports. This leaves many adults with autism spectrum disorder in limbo, relying upon alternative sources, such as non-profit organizations, to meet their needs.
This is only one of the many examples of how restrictive criteria leave adults with disabilities stranded. On top of the IQ score, PDD also looks for adaptive skills, to determine eligibility. One of AISH’s criteria is to have a severe handicap, where applicants have to meet the AISH definition of a severe handicap, in order to receive funding.
These eligibility criteria fail to address all of the barriers to employment for adults with disabilities. Adults with disabilities have reported difficulties in seeking employment.6 One study reported that Calgarians with disabilities found that having a disability led to difficulties in securing and maintaining employment. Calgarians with disabilities reported a lack of trust in their own employability, due to the employers’ tendency to label workers, as they becomes aware of their disability or disabilities. Some even reported that this has led to their dismissal.7 Vocational support programs and social enterprises have become popular responses to gaps in government support systems and services – however, this has led to an over-reliance on non-profit social services. Here in Alberta, waitlists for adults with disabilities entering support programs are lengthy. Some individuals and their families wait for years. Even with my mother’s meticulous research and early applications to various programs, my brother had to wait for a lengthy period, in order to obtain a place in the appropriate program.
So what are we doing wrong? Alberta is a bit of a conundrum. It has progressive policies and multiple programs to support children with disabilities. Yet, adults with disabilities suffer from marginalization and oppression, such as strict eligibility criteria and lengthy wait-lists for support programs. I certainly do not have the answer to this question. However, I wanted to write an introductory post, outlining the problems, to get a better grasp on why this is a reoccurring issue in Alberta. And so, I will leave you with two questions:
1) If you are an individual with a disability, or a family member / caregiver to an individual with a disability, what has been your experience, entering adulthood? What were the most significant challenges for you?
2) Where would you like to see improvements within Alberta’s disability support programs and policies for adults?
1. [Steger, M.B. & Ravi K. R. (2010) Neoliberalism: A very short introduction. New York: Oxford University Press.]↩
2. [Steger, M.B. & Ravi K. R. (2010) Neoliberalism: A very short introduction. New York: Oxford University Press.]↩
3. [Steger, M.B. & Ravi K. R. (2010) Neoliberalism: A very short introduction. New York: Oxford University Press.]↩
4. [Sonpal-Valias, N. (2016) Paradoxes in paradise: Neoliberalism in Alberta’s developmental disability field. (Doctoral dissertation) Retrieved from http://hdl.handle.net/11023/3046.]↩
5. [Malacrida, C. & Duguay, S. (2009) ‘The Aish review is a big joke’: contradictions of policy participation and consultation in a neo-liberal context. Disability & Society. 24(1), 19-32. https://doi.org/10.1080/09687590802535360.]↩
6. [Shier, M., Graham, J. R., & Jones, M. E. (2009) Barriers to employment as experienced by disabled people: a qualitative analysis in Calgary and Regina, Canada. Disability and Society. 24(1), 63-75. https://doi.org/10.1080/09687590802535485.]↩
7. [Shier, M., Graham, J. R., & Jones, M. E. (2009) Barriers to employment as experienced by disabled people: a qualitative analysis in Calgary and Regina, Canada. Disability and Society. 24(1), 63-75. https://doi.org/10.1080/09687590802535485.]↩