Welcome to Vital Light - a village concept where families can co-fund a cooperative supported holiday homestay retreat in Bali with view to hosting a series of informal family retreats that will help to work out compatibilities, we hope to evolve an inclusive co-operatively managed village of local and international parents and families with special needs children.
Essentially, we are forming a co-operative where families and people with special needs themselves as well as members of the global community, can contribute in monetised and non-monetised ways to the evolvement of a village through a model that is non-profit based, and where surplus funds are used within the community itself or gifted to other communities.
We have nearly finished building our first prototype Homestay house in Bali, connected with our local school program there, where families may come and spend time time with their family member and receive support to have a holiday together... This is a space where we can initially discuss our plans and vision for our futures and see where we have some compatibilities and means of working together. From there we may plan and create some pop-up respite retreats in Bali and/or Australia which we can co-funded through time/labour and or financial contribution.
For most families, it’s hard to imagine being able to go away on “holiday” with a family member with special needs (disability). Often it's actually harder than living/staying at home because the usual respite or care supports can't be relocated and new environments often don't have the needed safeguards. Currently, when families go away on holiday, they usually have to leave their PWD at a respite house somewhere and go holiday; or, take their family member with them (without their local carer support) which doesn’t then turn out to be a “holiday” at all! Further, having a child with a disability can and does exclude families from reasonable and necessary family bonding time that most "normal" families take for granted.
Not only in terms of care needs, but parents/carers can feel even more uncomfortable/socially isolated or even be excluded if their child demonstrates “inappropriate behaviours”, needs constant supervision, does not comprehend social norms and appropriate behavioral codes, and/or has difficulty adapting to different situations. These children have high-support needs which limit their parent/s’/carer/s’ ability to participate in “normal” social/holiday activities.
If nothing is done, carers will continue to experience isolation and struggle in a seemingly meaningless battle trying to get their person with a disability's needs met and fighting a long perpetual battle while their person's funding continues to largely benefit people who are making a business out of people being disabled. This model puts the power and responsibility back with the community and families of people with disabilities and uses funds to develop facilities which may be co-owned and enable "co-housing projects" to become self-sufficient in the long term or at least require much less funding than is currently being spent to maintain the lives of people with special needs disabilities. It will also give governance and accountability to people approved by family members and people with disabilities, not random CEO's of profit-based companies.
What if families COULD go somewhere WITH their person with a disability, who can have appropriate care while the parents can also have some time out/retreat time... What if there were somewhere parents/Carers could regenerate themselves, feel supported and spend time with other parents in similar situations: Be able to do things they couldn't usually do like an early morning yoga class, go for a walk or meditate... and have help with their family member with a disability's care. Where activities are organised for our "kids" and where s/he can be involved with with other "kids" and where people are trained to know how to manage or are at least tolerant of challenging behaviors (stimming and repetitive behaviors, exploring, nail biting, destroying things...) ; Where they can just have some time For themselves while knowing their family member is still close by and they are Able to participate in holiday time in a village/family-type environment.
COM – MUNITY or COMMON UNITY
I share this Vision with you – as a parent/carer of a 14 year old child/young adult with Intellectual Impairment /Autism– in the hope that I can bring families together, and also the wider community to help support each other – and improve our quality of life through reducing our levels of stress – creating more of a village-type retreat and mental health haven from the incessant but necessary demands of day-to-day life-management; Creating connections between people and putting a step forward in the future planning and compatibility possibilities for village-type environments/intentional communities we may live in in the future - and discuss models for this type of environment.
I imagine living in a community with my daughter and with other families - where I spend time With her doing activities with her for some time most days, but I am not responsible for being her "Carer" and also have my own house/space, my own life. She and I need help in order to live in this world: I am committed to making a good environment, a good life for her, where she can enjoy being around friends doing activities that are “normal” and “meaningful” and where I'm not going insane looking after her by myself all the time. Oh, and so when I die she'll be part of a caring community with other families and parents who share my sentiment/concerns and can manage her life like I would want.
I need to live in an environment where I can be supported in Freyr’s care needs… whether it be by other parents, carers and/or volunteers. I Know there could be a community surrounding me and her and other kids with special needs that is like a natural village – where it’s not ‘WORK” to look after PWD, where it’s not a “job I have to do”! Where it’s just Life – part of life – and everyone is happy and looked after /has their role which they enjoy.
Yes there can be external paid Carers that come in and do personal care and harder work – are trained in certain medical things and behaviour management. Others are volunteers and do more day-based activities with the kids, community support, kitchen, laundry, gardening, cleaning etc. And the parents get to enjoy spending time with their kids! And other siblings who often miss out on their parents’ time. But the basis for the village-community is to facilitate the process of co-contribution – and to see how we can change our individual and collective mentality from being “ownership/self-based” to “custodian/community-based”.
I imagine a group of parents getting together to form a Co-operative. This Co-operative manages the decision-making for the village/community. Parents make agreed physical/financial contribution to the CO-op. Land is held/owned/managed/rented by the CO-op and families/individuals "rent" an area of Land and then bring/build their own house (like in some retirement village models) - but all income stays within the community (except taxes of course). The CO-op could decide to hire a CEO or there maybe someone in the co-op that could perform this role as part of their Contribution to the co-op membership. There is no “external” ownership syphoning off money to shareholders; (no external "investors" to syphon off the village's finances). The CO-op will directly manage funding from NDIS for carers and other funding needs. Families and individuals with special needs can have businesses within the village that help to service the needs of the inhabitants. There can also be businesses run by the Co-operative that help manage and fund the village as a whole.
For example, there may be a small business which is responsible for Community transport: It could be an individual family business or be managed and run by the co-op and be collectively funded or established from residual funds from other services provided by the co-op. If an individual/family business, it may receive a no-interest start-up loan from the co-op; it could be funded to provide subsidised transport for the village.
Example 2: There may be a cafe/shop/spa/restaurant working on the same principle; a vegetable garden/community farm combined with school/activity centre for the "kids" that provides subsidised meals and also organises and coordinates therapies/therapist retreats; a business that coordinates care-giving; a natural building/construction; a massage/health care/yoga centre. The village as a whole may offer retreats/supported holidays for other families with "kids" with disabilities to come and stay as a "commercial service" and as a means for people to contribute financially who may not be involved at such an in-depth level of organising and back-end setup/service works.
Parents can volunteer their time and be responsible for supervising certain activities for the kids through the day. If everyone volunteers 2-3 or 4 hours a day (depending on needs and agreed contribution) then the cost of staffing for carers/care-givers will be lowered (dramatically) and kids with similar needs may be grouped together where appropriate and be able to share funding/carers which gives them friendships and group activities to participate in instead of being alone/isolated.
The village may also have a volunteer program that accepts "interns" who come and stay and help contribute to the village in areas such as care-giving, food preparation, gardening, natural building, massage therapy, administration etc. some places/appointments may also offer a small salary/award. basically their food and accommodation is provided by the village and in exchange they do an agreed number of hours or work in a chosen area. they may have specialist skills and come for a "working holiday", they could also be offered additional paid work, or they could come to build their skill set and for learning what about the village/community and how it it is working and to share their own skills and gifts.
The nice thing also is that when people work “in community”, people with disabilities can more easily be included. For example, a differently-abled person could help in child care or gardening/food prep... maybe even in helping prepare for massage treatments; and definitely in natural building. When there are more “eyes”, there is less need/pressure for one person to have “sole” responsibility, because in a “community-mindset”, we all help each other; Helping Together… That is how humans have survived over the millennia. It's something I've witnessed living in Bali for 3 years and Philippines before that. It's Natural for people with disabilities to be included in the community this way. And, it's giving back to us some of the things we have become dependent on external systems for.
Coming from my experience at the Earthship build in Tacloban following Typhoon Yolanda/Hian in 2014, I was moved and inspired by the one face-smacking realisation or – I'm trying to find the word in english – that what pervaded my experience at this site was the sense of happiness I felt; the sense of community – which I felt came from the feeling of everyone helping together – it was like a beehive. No one single person had anything to gain – but the community as a whole did... And it was this feeling of custodianship within people that permeated the whole camp with such an amazing sense of … I don't know what it was … maybe it was Freedom. All I know about the ingredients was that people came to Give Freely.
I imagine a kind of building cooperative being formed where a group of 5-10 families contribute a base amount of money to secure land lease and relevant permissions, legal setup, training for local people as carers and building and sustainable technology infrastructure costs for an area to develop into a village-community. There would be a yearly fee based on running costs and capital infrastructure for the cost of building so that in the first year – if one house is built, each family is allocated or chooses a “time-share” option and everyone gets to spend a portion of the year there in a “family holiday” environment. Depending on the scale and speed of building, how many local people are employed in building housing and the availability of local carers (or bring a friend with you) then maybe 2,3 or more families can have a holiday together the first year... and then perhaps 4-6 families the following year etc until all families can live there in their own dwelling if desired: Or if the aim is to keep a family retreat for holidays or living part-time then there would be enough dwellings for all families to share a yearly family holiday each year.
There may be some areas of improvement to develop in working out compatibility of kids for grouping families together for each holiday. For example, you wouldn't want a kid with noise intolerance and high sensitivity in the same group as say my daughter who can't get enough noise and sound/light stimulation. During the initial stages and also through pop-up family gatherings in Australia, parents can meet each other and work out some compatibilities for the longer term.
Matching and catering for different physical support needs in terms of accommodation and behavioural support skills and communication methods will be the challenge but it is hoped that in time we will be able to accommodate everyone at varying stages or help specific target/niche groups. If a family, after investing found a lack of compatibility or interest with others, there would be a way they could switch to another group, or else sell their “share” or “interest” (with no interest or inflation) or “seed” in their “pod/pocket” (these terms allude more to the ideas of grouping together)
The Vision is to enable families with children and young adults to come together and spend time living in community, feeling supported by paid carers, friends and each other. Being part of a natural learning environment and activity program. Giving quality-of-life and enriching experiences to carers and their families, support staff and friends... Contributing to local life here in Bali towards community projects and workshops that raise awareness about sustainability in practical ways... Finding compatibilities, common strengths and building towards a community-living environment where our kids can spend more time and form lifelong relationships. I believe that it is safer for our kids to be “in community” than “alone” in a care home/institution... And forming naturally protective community around our kids is the best safeguard for their future when we are “gone”.
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