Parents need flexible supports and a high-trust model
When we provide parents of disabled children with resourcing that doesn't require a heavy administrative burden, everyone is better off
Working collaboratively from a high-trust, autonomous model - with an emphasis on meeting the point of need with as few barriers as possible - means that families receive needed supports when and as they need it. This post describes one example from one grass-roots organisation in Aotearoa New Zealand to showcase the possibilities and rewards of taking a flexible, family-oriented approach to providing support.
A low-trust model of punitive welfare support creates multiple administrative burdens for families. For example, parents who receive the Child Disability Allowance have to regularly provide specialist reports to confirm that their child is still disabled; if they receive Carer Support they must correctly fill out extensive paperwork and track receipts for reimbursements; if the family is eligible for Working For Families, the parent must perform precise calculations for a family’s income - or risk incurring a debt that must be repaid the following year.
The compounding effect of these interactions, barriers, and worries can leave parents of a disabled child without the necessary financial supports. Parents also worry about receiving sufficient funding for their child’s needs and can feel overwhelmed by the sheer amount of bureaucratic work required for what can be a rather small amount of cash.
During the first year of the Covid-19 pandemic, a number of funding restrictions were loosened and additional funds made available. One such fund was the Community Awareness and Preparedness Grant Fund, which was made available during 2020 to community groups providing “essential community-led solutions that supported local resilience and community wellbeing during COVID-19 lockdown restrictions”. Parents of Vision Impaired (PVI) was one of the many organisations which applied for and received this funding.
Examples of the challenges PVI families were facing during this time are as follows:
one family had to manage the grocery shopping for their vision-impaired 35-year-old daughter who is in a community living situation but who was now without her usual supports
another family had their 45-year-old intellectually disabled and vision-impaired son move home with them for the duration of the lockdowns and they were in need of art supplies to keep him engaged during the afternoon
another family with five children had to cancel their home assistance due to the vulnerable nature of their vison-impaired 8-year-old and they were struggling to find items to keep family members engaged and entertained
one mother had to live away from home for the duration of the lockdowns as the primary income earner is an essential worker and their vision-impaired 6-year-old is highly vulnerable. They found themselves needing additional data to stay connected with friends and family and desperate for new apps to keep the 6-year-old engaged during the day
PVI families utilised the funding for various items, from purchasing applications for their child(ren) to use during lockdown to stands/holders for iPads to printer ink and paper to stationery items for arts and crafts to grocery vouchers for food.
For example:
A blind, immunosuppressed teenager was at home during the nationwide lockdown. During this time of great tedium, the student expressed an interest in learning baking skills. Subsequently, their specialist support teacher prepared a series of lessons that incorporated baking. However, the cost of providing the necessary pantry items during a pandemic impacted on the family’s already stretched budget. PVI sent the family a supermarket voucher, which eased their additional financial pressures and ensured the teen could continue enjoying their lessons.
Interactions to distribute the funding to PVI parents occurred across several platforms: direct messaging, Facebook groups, email, telephone, and via specialist teacher support. This flexibility and high-trust model meant the process was as barrier-free as possible during what was already a stressful situation. Similarly, in providing support PVI utilized multiple options according to parent’s expressed preferences and needs, from reimbursing printing costs directly to bank accounts to purchasing items on behalf to mailing out supermarket vouchers. Rather than insist on a specific form being completed in a particular way we simply worked with parents to identify their current need and how we could best meet it at this time.
Below a parent comments on the difference this process made to her:
A family from a major urban centre had a need for high contrast black on white materials which could be enlarged and/or sat close to the eyes for their low vision child. As their child has dyslexia and hearing loss, they needed diagram explanations, drawing, and enlarged materials utilising solid black on clean white. PVI assisted the family to find suitable materials from a stationery store that was (a) open and (b) able to home deliver. The seamless and parent-centred nature of the interactions resulted in this comment from the parent: “I just burst out crying - good crying! Nothing is ever this straight forward…it was suddenly evident how hard it's been!?”
Being able to provide practical assistance in dignifying ways left parents feeling supported. Likewise, centring parents’ needs throughout restored a sense of control and self-determination at what was an exceedingly difficult time. For parents the feeling of being heard was as valuable as the provision of practical support. Simply knowing that there were not alone or forgotten about did wonders for their mental health and emotional load.
Parents of a disabled child are typically managing multiple interactions across organizations and agencies. It is not uncommon for parents to navigate assorted subsidiaries of the Ministry of Health, the Ministry of Education, and the Ministry of Social Development in order to access some of the support their child needs. The process to access this support is typically time and energy consuming, contains various barriers and hoops, and does not always result in the needed support eventuating.
As the above example from PVI shows, supporting families means ensuring support initiatives are easily accessible, flexible, support self-determination, have multiple entry points, and don’t add to the parents administrative burden.
Further reading:
Graham, R. (2021). Barrier free supports for parents of a vision-impaired child during COVID19. Journal of the South Pacific Educators in Vision Impairment. 13(1) pp.52-57. Link: https://www.spevi.net/jspevi/