Meet Sasha & Oleg – parents caring for a child with a disability

• Families where the major income earner has a disability are more likely to report food insecurity:  

Through our research, we talked with families caring for a child with a disability as well as families where a parent was living with a disability. The experiences of these families can be very different, but there are some factors which we saw across any family that includes a person with a disability, including inconsistent availability for employment, increased expenses, bureaucratic hurdles to obtain reimbursement for medical costs and/or access income benefits and tax credits and inconsistent and the potential need for different housing more supportive of a person with a disability.  

In today’s post, we focus on households that have a child with a disability. 

Sasha & Oleg 

When Sasha and her husband Oleg became concerned about their child’s developmental delay, their doctor referred them to a specialist for a diagnosis. Faced with a multi-year wait, they decided to pay for a private “fast-track” option which cost $5,000 which they paid for with a mix of savings, modest employer extended benefits, and a line of credit. When their child received a diagnosis, they were able to get on a waitlist for a one-on-one worker to support their child’s participation in school but were told that there is a five year wait. Oleg stepped away from his work as the needs of their child demanded constant care which impacted their household income and food budget. With less household income, Sasha and Oleg were faced with difficult choices and this often meant having smaller meals or missing a meal and occasionally seeking support from friends, family and neighbours. Oleg is keen to return to work, especially because he’s aware of their child’s medical costs on the horizon and worries about her future. 

Sasha and Oleg’s story highlights some key themes we heard in our interviews relevant for program design, including: 

Recognize rhythms of caregiving: Supports that recognize the need for caregivers to take a break, to access services alongside other care obligations, or to achieve multiple aims through a single interaction are likely to enable better outcomes. 

Create low-barrier supports during benefits application marathon: During the period of benefits application for people who have a newly diagnosed or acquired disability, low-barrier supports may help them bridge through this period of reduced income and great uncertainty. 

Meet families where they’re at: Families caring for a person with a disability are likely to already be deeply engaged with systems of care as well as bureaucratic systems. Meeting them in those spaces may reduce burden and improve access for them to the supports they need to reduce food insecurity. 

Critical moments to design for 

To prevent, or quickly move families out of, food insecurity, there are a few critical moments we can design for: 

• Birth of Child with a Disability: Giving birth to a child with a disability adds an additional layer above and beyond family costs and stress that may manifest now or later, driving medical expenses as well as adjustments to employment and household expenses. 

• Disability acquisition: For families where the disability is acquired later (e.g. a sports-related injury, illness), the period of disability acquisition can be a vital period with lost income for parents, spiking expenses, and deep uncertainty about the future. 

• Diagnosis, evaluation, benefits application: The process of diagnosis and benefits evaluation brings potential for spiking expenses, possible income loss from time off work to support appointments, and bureaucratic challenges accessing benefits. 

• Job loss or leave: Job losses or leaves for caregivers can be a challenging period to navigate, as can re-entry into the workforce after a period of leave. 

• Change in need: Change in the needs or life stage for the person with a disability can create periods where additional support to avoid food insecurity are required. New housing, transportation, or care services may require adjustments in the family financial picture. 

Promising system touchpoints

Our interviews and workshop also highlighted some promising system touchpoints to reach households with an adult or child with a disability including: 

• Community, Employment, and Social Assistance Offices: Families may be engaged with community and social assistance offices already, creating a context in which food challenges may also be addressed. Low-barrier, universal supports like 211 are also promising.  

• Disability Support Services & Healthcare Providers: Dependent on the nature of the disability, this group may have frequent contact with healthcare providers and disability support services.  

• Schools & Daycare: Families caring for children with disabilities may have frequent contact with educators, creating a trusted channel for highlighting other resources.  

• Food Banks & Emergency Food Supports: This group may be accessing emergency food supports due to expense spikes and severity of need following lost income. 

• Financial Services (Private Sector): The need to make long-term financial plans may lead this group to engage financial planners, accountants, and banks.  

• Social Media & Affinity Groups: Disability-oriented communities may be powerful channels for benefits navigation, surfacing support options, and steering families towards the resources they need for their specific situation. Social media can be a useful tool for accessing both specific affinity communities as well as broader local opportunities for food access. 

You can learn more about all five archetypes in our summary report. Later this month we will take a deeper look at the archetype of a single person with a disability. 

If you’d like to discuss the report or receive a copy of the full research report, please fill out our request form or email info@feedopportunity.com.