By Maia Chung
The need for the Jamaican State to look into the funding and development of at least three Autism Respite Care Facilities in the short term; possibly over the next two years is an imperative.
These state operated centres would be crafted to offer “best practices “care for Autistic individuals of all ages, or at least up until the age of 18 years old – initially.
The recommendation here is specifically to provide Jamaican parents with a window of opportunity to work to support their wards and charges.
Respire care can take several forms as defined by http://www.disabilityscoop.com/2013/04/08/respite-care-autism-parents/17659/
“Parents of children with autism often report high levels of stress, but new research suggests that getting a care giving break for as little as one hour a week can really make a difference.
In a new study looking at moms and dads of those with autism, researchers found that parents were less stressed and had improved marital quality with each hour of respite care received.
Researchers polled 101 sets of parents from across the country, each of whom were married and had at least one child diagnosed with autism ranging in age from 1 to 33. Moms and dads were asked to individually answer questions about their marriage, their feelings about daily responsibilities like money and work as well as how much respite care they received during a typical week or weekend.
Overall, parents indicated that about 64 percent of their kids with autism spent time with a respite care provider.
Grandparents were most often the ones cited in giving parents a break, but moms and dads also reported getting help from babysitters, community agencies and extended family members.
Such support had a significant impact, with parents experiencing less stress and more so-called “uplifts” — qualities that led to better relationships — researchers reported in the Journal of Autism and Developmental Disorders last month.”
My foundation The Maia Chung Autism and Disabilities Foundation, (MCADF) has found anecdotally that parents, are calling for Respite Centres so that they can work and care for their family members affected by the Autism disorder. In Jamaica the issue of funding the family member affected by Autism is a primary source of stress.
The care…from these Respite Facilities and as recommended by this author;should not be academic, but could include it – but should centre on daily requisite care, as it relates to hygiene, meals, stimulation and therapies - to allow their families to have a safe place to leave their charges – to work and undertake some of the financial care of their Autistically affected child or relative.
I would recommend that these facilities be set up with the demographic target group, at the outset being between 7 to 17.
Currently what pertains is that many of the working class families affected by Autism, as well as the officially classified poor are not able to work to earn to help themselves and their families, due to an inadequate provision of safety centres where the children and or wards can spend the work day safely, to allow the parents and guardians to work and contribute to their care.
With more parents working the State burden to finance these persons should decline.
The recommended way forward is a non-academic structure, at the outset… if these Facilities would be considered as a part of a short term solution.
Why? It will take years of inter-ministerial planning between the Education, Health, Youth and Social and Security ministries of Jamaica, to develop the proper policies that are necessary to speak to the re-organization of existing health and education systems now available, for Autistically affected persons in this nation.
In the meanwhile necessary as policy revision and long term planning are – the needs and issues relating to Autism are proliferating and are not being addressed at the pace they need to be addressed at. Which include getting those impacted that is the caregivers, into the net of doing their part to provide for their Autism impacted family member? This has to be an option.
There has to be some short to medium term initiatives that are instigated at the State level, that look to getting a hold or even a grasp on the Jamaican Autism issue - in order that some elbow room, may be garnered; by the very State - so that long-term policy building and structuring which is the only way to comprehensively and truly get the issue under some control in Jamaica…can be allowed to happen.
These recommended Respite Centres could be in Kingston Montego Bay and Central Jamaica, at the outset; to provide as wide a spread as possible.
The issue of Autism and provision of State designed infrastructural care is one of urgency, as data on the ground in Jamaica says that one in five hundred children are presenting with Autism in 2013, this is based on anecdotal research conducted by my agency The Maia Chung Autism and Disabilities Foundation (MCADF).
This number is a conservative estimate and has been repeatedly decried as woefully inaccurate, i.e. the presentation of Autism cases in 2013 Jamaica …is at a much higher rate than one in five hundred.
Currently based on anecdotal research by the MCADF there are not enough schools here to handle the number of children presenting with the disorder, with that in mind if there were three day care facilities planned for the nation, in the areas specified, where the affected could be kept in safety until the Jamaican community can grow the proper long term infrastructure necessary for these families – this could be a positive progressive action that yields valuable outcomes.
The inability to work due to their Autism charges is a primary concern of the clients of the MCADF . These facilities should see more relief for the problems associated with Autism for the Jamaican family as the entire family unit would not be compromised by the Autism disorder .
I would hazard to say that Facilities of the nature of these proposed in this piece, should be a simpler step to enact by the State, in terms of planning costs and actualization.
However what is being done in Jamaica is too much discussion about the problem and no action, one gets the impression, most of those who can affect a movement for progress in this area, are waiting on the perfect solution, I haven’t lived that long, but I have yet to see the perfect solution to anything.
Right as we read this, diagnoses of Autism are out pacing cancers, HIV and diabetes combined – daily, in every country in the world.
In the summary of the first World Report on Disability a collaborative work between the World Health Organization and the World Bank it says on page 17 under Recommendations, “while many countries have started taking action to improve the lives of people with disabilities much remains to be done.
The evidence in this Report suggests that many of the barriers that people with disabilities face are avoidable and that the disadvantages associated with the disability can be overcome.
The Report says “…recommendations for action are cross-cutting…implementing them requires involving different sectors, health, education, social protection, labor, transport, housing and different actors, governments, civil society organizations (including disabled persons organizations), professionals, the private sector, disabled individuals , their families, the general public and media.”
The Report continues, “it is essential that countries tailor their actions to their specific contexts. Where countries are limited by resource constraints, some of the priority actions, particularly those requiring technical assistance and capacity building can be included within the framework of international cooperation.”
Maia Chung is a Member of the National Advisory Board for Persons with Disabilities in Jamaica, which advises the Prime Minister and Chairman of the Board Public Education Sub Committee and Founder and Managing Director of The Maia Chung Autism and Disabilities Foundation
