Turning eighteen brings new gaps and challenges
The journey into adulthood is a well-celebrated and can be an exciting time for many young people. But crossing the threshold into the adult-care system sheds light on a number of unique challenges for many young adults living with disabilities, medical complexities or developmental differences.
Researchers report fragmented systems, complex barriers, lack of appropriate support, and undeniable financial and emotional hardship. This issue doesn’t just affect a select few, as we may like to think. Rather the Holland Bloorview report, called, “Turning 18 isn’t so Sweet” put together with an advisory group of young adults with disabilities, paediatric health care providers and caregivers, suggests that there are 70,000 young adults with disabilities annually who transition out of paediatric care in Canada– and the number continues to rise.
Gaps in access and inclusion
Though ‘best practice’ guidelines to assist with the transition have been developed at both the provincial and federal level, there is still a reported desire for improvement. Specific recommendations to improve include: flexible age cut-offs for transfers into adult care, learning and development for youth in transitional care issues and improved quality standards for practice.
Disability stigma: While these ongoing efforts can be applauded for bringing awareness, the current lived experience of young adults and their caregivers showcases a few ongoing issue worth solving. Simply put, issues within the adult medical care’s perception of youth with disabilities suggests that ‘disability stigma’ is key factor in the provision of inadequate care, recent reports cite.
Missing services: There is also evidence of shortcomings in the provision of adult services. Almost a third of youth and their caregivers told surveyors that they do not have access to qualified specialists and clinics in the adult system leaving almost half (50%) of the caregivers surveyed falling back to rely on paediatric health care providers.
Lack of knowledge: Even worse, there are discrepancies in the understanding of disabilities by adult health care providers and specialists. This results in more than a quarter (38%) of young adults having a lack of confidence in their care providers knowledge and awareness of their disability, leading to them feel unsupported and unheard. Caregivers echo this non-confidence vote with 41% feeling that in the situation they are unable to provide care the health-care system will be inadequate in taking their place.
Worse rurally: These issues are exasperated in rural locations, with higher percentages of rural caregivers (40%) feeling like the adult-medical system doesn’t understand their young adults’ disability, compared to caregivers in suburban (25%), and urban (26%) areas. The same discrepancies are seen in access to adult specialists and clinics with higher percentages of rural caregivers (43%) reporting lack of access, compared to suburban (30%) and urban (28%) locations.
Ableism: The barriers don’t stop there, almost eighty percent of young adults with disabilities face one or more barriers when accessing medical care. These included almost half (49%) who reported facing attitudinal barriers, which showcases how prevalent ableism is in restricting young adults from getting much needed care and supports.
The report’s authors suggest that these identified barriers can cause young adults to refrain from seeking medical care, which can be extremely detrimental especially in the areas of sexual and mental health.
A fulfilling life…
The impact of inadequate healthcare can also force young adults to reduce activity levels and socialization:
– 64% of young adults face the issue of their health care needs limiting their participation in life. The result is social isolation and support gaps, which can have an adverse effect on physical and mental health.
– 87% of young adults do not always have the appropriate support to safely socialize with friends or peers and 38% report rarely or never relying on access of additional care services.
Financial burdens
People with disabilities are also twice as likely to live in poverty wherever they live in Canada. The switch to adult services is a significant contribution to the ongoing financial challenges that more than 70% of young people face.
While the paediatric system provides some services (i.e., physiotherapy in Ontario for example) that coverage stops in adulthood. Government-funded prescriptions stop at age 24 (unless they have Trillium benefits) forcing many to have to pay out-of-pocket if they no longer qualify for parent’s private insurance or don’t have their own coverage. The cost of medical devices in the adult system, and tickets prices for accessible transportation are also an additional surprise for many families.
Navigation issues
The aforementioned challenges are exasperated by the unreasonable amount of time that is required to manage in the “adult health care” system. This causes many youth with disabilities to cut back on work hours or perhaps quit their jobs- so as to make room for medical appointments. One-third of survey respondents reported changing their education or job status to maintain their precarious struggle between finances and health.
Although they can’t really afford it, over half of transitioned young adults and caregivers find themselves forced to work within the private health care system to access services they require. This worsens their frustration and financial strain and highlights a troubling link between health status and financial stability, which begs the question – “what happens to those who simply can’t afford the care they need?”. Access to healthcare in Canada is supposed to be a fundamental right—but the actuality of financial barriers and systematic gaps is taking
that away.
A path forward
The report’s author’s paint a bleak outlook for current transitioning youth but are optimistic that the way forward can improve every youngster’s transition into adult care. Founded on the basis of three pillars, recommendations include:
1) Focus on coordinated care:
The fostering of a more integrated system of care where no youth is transitioned out of paediatric care until the adequate equivalent care in the adult system is secured.
2) A more knowledgeable health-care force: With the clear gap seen in understanding or training of adult health care providers the report calls for increased learning and education will allow for the elimination of stigma and more enlightened disability related care.
3) Transitional support that extends beyond clinical care: Holistic life-long care should
be expanded to include assistance in education, employment, overall wellness and social integration.
Anjolina Rankin-West is an editorial assistant with an interest in family caregiving.
For a copy of this report visit: hollandbloorview.ca
Photos: iStock. Shutterstock.
