Address – The First Parent Skills Training Programme For Children With Disabilities

Feature Address By His Excellency Anthony Thomas Aquinas Carmona ORTT, SC President Of The Republic Of Trinidad And Tobago
At The First Parent Skills Training Programme For Children With Disabilities
At Mount Hope Women’s Hospital – August 21, 2017

I wish to welcome the esteemed visitors from Autism Speaks and the World Health Organization (WHO) to the Republic of Trinidad and Tobago, where they will undoubtedly provide much needed assistance and touch lives in a transformational way. Today represents the progressive and favourable results of active, tireless and relentless advocacy. Advocacy never results in instantaneous success. This project reinforces the need to be consistent, persistent and persevering in the advocacy of a just cause and this is a just cause. For it seeks to improve the quality of life for persons with disabilities, their families and caregivers. Permit me for a second as I commend and applaud the efforts of my wife, Her Excellency for her fight, a fight with foresight, as a facilitator, in the trenches of genuine advocacy who together with Dr. Natalie Dick were critical in making this venture possible. Hard work really does pay off. I further wish to commend the Office of the Prime Minister and the Minister of State Dr. Ayanna Webster-Roy, who unfortunately could not make it this morning, for all their hard work and assistance rendered in ensuring that this project now comes to life.

Again well supported by the Permanent Secretary in the Office of the Prime Minister.
Allow me to rewind to the year 2013 when Her Excellency attended the 6th World Focus on Autism, which is annually co-sponsored by the spouse of the United Nations Secretary General and U.S. based organization, Autism Speaks, the world’s largest Autism-focused Non-Governmental Organisation (NGO). The profound testimonials of Bob and the now deceased but phenomenal Suzanne Wright, co-founders of Autism Speaks were telling and this knowledge and experience gained inspired Her Excellency to try in some measure to improve and uplift the quality of lives for persons with Autism and their families.

At that forum and subsequent fora, Dr Natalie Dick, a committed Specialist Developmental Behavioural Pediatrician, served as her Technical Advisor. This provided networking opportunities for Trinidad and Tobago and was the catalyst that resulted in Autism Speaks offering to host the first Caribbean Regional Parent Skills Training Programme.

In October of 2016, Dr Natalie Dick attended the Global Autism Advocacy & Leadership Network meeting in Washington DC, USA and in April of this year Dr Lucia Murillo, Assistant Director Education Research, Autism Speaks visited Trinidad and Tobago for the Project’s Planning meeting. Ladies and Gentlemen, four months later, my wife and I are here today to witness this Gala Opening Ceremony of this much needed training workshop.

What has happened is a unique collaborative effort between the Office of the President of the Republic of Trinidad and Tobago and the Office of the Prime Minister, with the implementing ministry being the Gender and Child Affairs Division of the Office of the Prime Minister. The mandate of the Cabinet of Trinidad and Tobago, Cabinet Note PM (16) 99, led to the creation of an inter-ministerial team, with a Planning, Implementation, Quality Measuring and Monitoring team comprising representatives of the Office of the Prime Minister – Gender & Child Affairs Division, the Ministry of Social Development & Family Services, Ministry of Education, Ministry of Health, North Central Regional Health Authority, Children’s Authority and the Consortium of Disability Organizations (which in turn represents forty-three (43) disability related organizations).

The World Health Organization (WHO) and Autism Speaks are both respected international organizations with a wealth of international programme development and management expertise in public health research. Both organizations belong to extensive professional networks of international experts in the field of health and disability, and can add great value to existing national and regional professional capacities and ongoing initiatives in this area.

This practical, flexible, culturally adaptable training programme especially designed for families of children with developmental disabilities, requires meaningful financial, policy and legislative support from the Government and stakeholders to be truly sustainable. It stands to be a valuable resource for caregivers and families of children with developmental disabilities in Trinidad and Tobago, and also as a crucial community based resource and component for caregivers of children with disabilities in the CARICOM group and the rest of the Caribbean.

Parent Skills Training represents a plan to educate, train and empower caregivers by way of  an evidence-based strategy that is useful in professionally under-resourced settings, like Trinidad and Tobago and the Caribbean for it enhances the efficacy and the performance of overall patient management. Parent Skills Training is not meant to take the place of specialized services but rather, a supplement and compliment for professional services and/or fill gaps while specifically children with ASD are on waiting lists for these services.

This programme will train Master Trainers and Facilitators, who in turn train parents and other caregivers to use scientifically proven strategies for promoting child development, improving how they interact with their children, communication and social skills, reducing disruptive and other inappropriate behaviours, sometimes so being, and strengthening their own coping skills as caregivers. The emphasis is therefore on skills that the parents and their children can use daily and practically as they participate in activities at home, school and play.  In this regard I feel a similar project ought to engage the employers of this country, because employers in this country, the Caribbean and the world at large, can be very insensitive out of sheer ignorance so I feel we can look at the possibility of the programme engaging employer services. The philosophical outvie and raison d’être are undeniable in impact in this particular programme.

Master Trainers have some specialized training in child development that includes autism or related developmental delays or disabilities. In some countries, Master Trainers may include child psychologists, special education teachers, social workers, speech therapists and developmental pediatricians. Master Trainers train non-specialists we call Facilitators. The Facilitators then go back to their local communities to conduct group programs and visit individual homes to share the strategies with parents free of charge. Many of the facilitators will be teachers, social workers, nurses and caregivers of children with disabilities and other community workers. They will also include parents who are taking a leadership role in the community of persons with disabilities locally and in the region.

The Office of the President remains a committed and concerned stakeholder by virtue of its consistent advocacy and endorsement of initiatives to raise awareness not only of persons with Autism Spectrum Disorder (ASD) but persons with all forms of disabilities. A measure of that advocacy is ensuring that the wider community and the region are sensitive and empathetic to persons with ASD and that equality of treatment is not the sole domain of the able bodied. In 2014, to raise awareness for the first time, the Office of the President of the Republic of Trinidad and Tobago participated in the global advocacy initiative by hosting a , “Light it Up Blue” ceremony in the President’s Grounds as part of the World Autism Awareness Month, that is commemorated annually in April. This exercise has continued in 2015, 2016 and 2017, and saw several local corporate entities, members of civil society the NGO’s and of course the Government with their support following suit. Her Excellency and I even successfully encouraged the authority in the Bahamas to initiate a “Light it Up Blue,” never experienced before in the Bahamas during our visit to the Bahamas in 2015. So that advocacy doesn’t have to be local.

At the Seventh World Focus on Autism in 2014, the urgent need for greater levels of international advocacy for persons with ASDs and other disabilities was ventilated.
In the spirit of this international command 2015 marked another first for the Office of the President of the Republic of Trinidad and Tobago, with the publication of a newspaper supplement in the Trinidad Newsday, on April 30/2015, entitled “Autism in Trinidad and Tobago: Awareness to Advocacy and Action”. This was accomplished with the yeoman support of Dr Natalie Dick consisting of informative articles on ASD, advice and solutions and personal stories and it was highly commended by the international stakeholders of Autism Speaks and the United Nations.

In April 2017 again with the same support of the Office of the Prime Minister and the relevant ministry and certain members of corporate Trinidad and Tobago. Again with the pivotal assistance of Dr. Natalie Dick the Office of the President published a newspaper supplement again with a view of sensitizing and informing the public of ASD and its corresponding challenges to the family unit.

As an International Lawyer, I was heartened by Trinidad and Tobago’s ratification and signing on of the United Nation’s Convention on the Rights of Persons with Disabilities and obviously all of us look forward to enabling legislation that would institutionalise the rights of those with disabilities in a very effective way. I think there is need for a regional trust in this regard and as a result I wish to reiterate the call by Her Excellency at the The Opening Ceremony Of The United Nations Regional Training Workshop in May of 2017 On the Rights of Persons with Disabilities at the Hyatt. There are movers and shakers among us and it is us to strive for this Caribbean initiative, and wish to quote what Excellency stated, and I begin the quote, she said, “ This Forum must therefore become the engine room that drives this basic human philosophy and need of the persons with disabilities to be a genuine part of the whole. It is my humble suggestion that this forum may even see it fit to encourage our Caricom leaders to declare a Caribbean Decade for Disabled Persons 2018- 2028 following the UN Decade for Disabled Persons 1983-1992 and the African Decade for Disabled Persons 1999-2009. Such a Caribbean initiative will invariably encourage, policies and culturally sensitive programmes that can result in the full, genuine participation of persons with disabilities in Caribbean society. It will encourage behavioural change towards persons with disabilities alleviating their poverty and marginalisation and will implement in spirit and fact, genuine inclusivity, equal opportunity and mutual respect in the Caribbean Region.”

In so doing we in fact will create the kind of holistic society that will encourage us all, because at the end of the day, how will a society be judged? By how we treat the strong and powerful? No, it is by how we treat the weak, the marginalized nad the voiceless. So I have again to thank from the bottom of my heart on behalf of my wife, Autism Speaks, Dr. Dick, Jacqline Johnson, and Minister Ayana Webster-Roy.  I tell you I remember going to a church ceremony in the Anglican Church and she sat next to me and she said to me, “It’s not happening fast enough,” and that passion was demonstrated by her engaging us at the Office of the President to do things in collaboration and giving support to Her Excellency’s thrust to make us a little more aware.

So I have to thank you at the office of the Prime Minister for engaging us in this affirmative manner. So again ladies and gentlemen, we must not give up, we must not lose hope, we must continue to struggle in the face of any adversity that plagues us because we shall overcome, good will overcome, the just things will overcome arbitrary things.

I know it’s not easy, we recognise that the Autistic society, the parents, the caregivers, they suffer, they suffer every single day, it is a struggle. As much as many times they will optimistically state, the sense of hope we need to ensure that they are given the kind of support that is required to be better parents and to make our society a more understanding society. So again I have to thank all the persons here today who have helped tremendously in making this wonderful occasion a delight. We must not give up, we must always look forward.

I thank you.

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