NOVEMBER 2022: the four mums behind Australia’s number one social network for parents raising children with disabilities, Kindship, have raised more than $1 million that will go towards their start-up that unravels NDIS complexity. According to Summer Petrosius, Sandy Golder, Steph Wicks and Tara Thompson, one of their main priorities has always been to unshackle parents just like them from the time-wasting NDIS infrastructure. The group’s own research of more than 1,000 families raising kids with a disability has revealed 1 in 4 parents are spending 5+ hours each week navigating the NDIS. The  organisation’s end goal – parents being able to spend more time with their families, being able to resume meaningful employment, and regaining their identities.

The Kindship app matches up parents with lived experience with parents new to raising disabled children so they can more easily navigate a diagnosis and the complex healthcare and funding systems that come with it. They already have 2,500 families using their business via their app each month and the $1 million raised during their Birchal equity crowdfunding campaign will be used to launch and scale and NDIS plan management tool, the “Kindship Wallet”, so more families can be assisted. According to the organisation’s research, 77% of parents on the Kindship social networking app have signed up for the Kindship Wallet waitlist. Every NDIS participant is entitled to an additional budget of $1,248 per year to engage a plan manager. The four mothers believe their service offering is so unique, they can capture the lion’s share of the under-18 Plan Management Market, which is a $332 million-a-year opportunity. Note, there are currently 266,000 NDIS participants under the age of 18, of whom the vast majority are represented by their parents.

The group is set to launch an Australian first innovation called the Kindship Wallet that couples AI technology with community-driven data and recommendations, so that parents can make decisions regarding their choice of services and providers, and use of their child’s NDIS budget supported by families who have been there before. This will ultimately give families more choice and control, the tenets of the NDIS.

According to the CEO of Kindship platform, Summer Petrosius, parents raising children with disabilities are at breaking point. Of the 1 in 4 parents spending 5+ hours each week navigating the NDIS, 83% are neglecting physical exercise, 71% are missing routine medical check-ups, 31% have given up seeking employment, 53% never leave the house, 50% do not go on family holidays, 68% say they do not have time to clean their house properly, 63% are suffering sleep deprivation and 57% are feeling isolated and almost never see their friends and family.

Amanda Kenny is a Sydney mum of 5 boys who has not had any employment since 2009. Her son Ashton is Autistic and has ADHD, Anxiety, and a learning disorder. “I’ve had to deal with my son’s school refusal, so between having to chase him down streets after I drop him off at school, getting called in by the school to pick him up and taking him to his multiple therapy visits, I barely had any time left for myself. The limited time I was getting, I was spending it on the NDIS or caring for my husband and father who were both battling cancer. The weight of the world was on my shoulders and the NDIS made life even tougher,” said Amanda, who as a result of her workload has been diagnosed with multiple conditions including anxiety, depression, and panic disorder.

Parents like Amanda who are now using the platform report feeling more hopeful about their future (40.91%) and have seen an improvement in their mental health (42.05%) – all thanks to the social and peer support available through Kindship’s platform.

The soon to be introduced Kindship Wallet will help parents better budget, track and manage their child’s NDIS funding. Existing plan management services are described by parents as too complex and lacking in staff with lived experience of disability, which limits their capacity for empathy and experience-informed advice. As a consequence, families are often left with large NDIS budgets and no guidance on what to spend the money on or where. The Kindship Wallet sidesteps this fundamental service flaw because it exists within a social network, where parents can provide feedback on budget management and spending ideas, as well as local services and other supports that they are using to help their children achieve their goals.

“The demand for disability-related support and services often exceeds what is immediately available,” said Sandy Golder, Kindship Co-founder and parent of a child living with a disability. “It is not uncommon for families to call numerous service providers seeking help for their child and then sit on waitlists for 12+ months. This experience contributes to the distress and difficulty associated with navigating their child’s diagnosis and disability. We are providing parents with crowdsourced provider reviews and waitlist data, which will help families understand their options and find alternatives. This has never been done before.”

Most importantly, Kindship employs plan managers who are parents or carers of children with disabilities. “The Kindship wallet gives our community the opportunity to consciously spend their NDIS Plan Management budget, and directly contribute to the employment of other parents! Not only are they helping improve the financial well-being of families living with disability, but they are also having access to plan managers that truly understand what everyday life and navigating the NDIS is like. Amanda Kenny is a great example, who has now come on board as Kindship’s Head of Community Wellbeing. Juggling her care commitments means she hasn’t held down meaningful employment since 2009 – and now she can. She’s a brilliant asset to the team, and has a wealth of experience that she can offer to parents living through the same situation.”

“The Australian Government knows the NDIS is ridiculously hard to navigate, which is why it gives families $1,248 each year to help manage their NDIS plan. For every single parent that uses our plan management tool, the Government will reimburse Kindship $1,248 a year. With 266,000 children under the age of 18 with an active NDIS plan, that’s a $332 million opportunity every single year, which will be paid for by the NDIS.”

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