PRESENTATIONS | disabilities

CONFERENCE PRESENTATIONS

Children With Disabilities Have Rights Too

High Level Panel Presentation

The Promise of Equity: Advancing the protection of Children with Disabilities
presented by:Ms. Lakshmi Puri

To Be Inserted

Special Olympics a Global Movement

A Vehicle for Achieving Inclusion and the Social Development Goals
Presented By: Ms. Maureen Webber

This afternoon I speak from my role as a former volunteer and now contracted team member of Special Olympics North America. I have an underlying reason for this all, a 24 year old young man, who is the wind beneath my wings, Brian has pervasive and non-diagnosed mental disorder… which means that the doctors have no idea, and I stopped spending money on that. Today Brian does not speak, is incontinent but does not comprehend the spoken word. Along with Brian I dedicate all my work to himself, Anna-K a daughter and sister extraordinaire and to my God.

So I thought I would start with some facts that is what us Social Development Practitioners do:

14- 15% of the population have a disability, for us in the emerging economies that figure is higher.
Children with disabilities are less likely to attend school….the result they have limited opportunities for human capital formation and productivity as adults.
No surprise that 80% of adults PWDs are unemployment, no opportunities as a child = economic exclusion as an adult.
Children with disabilities suffer low self-esteem, ridiculed, teased and in some instances opting out of school even when the opportunities exist.
Because of higher cost people with disabilities and their households face they are likely to be poorer than their non-disabled counterpart.
41% of the basic dental needs of persons with disabilities are not met.
Not surprisingly, since many disabilities are related to ageing the break out show that 9% of those with disabilities are ‘children’ that is 0-14 years.

It is not then a wonder why our children get lost in the development landscape. 9% of 14-15%. But least we forget children with disabilities grow up to be adults with disabilities. Failing to respond to their needs, excluding them from the social and economic fabric of life has consequences.

It also means that when in general we don’t respond to the needs of PWDs, and in particular those of Children with Disabilities we are certainly ignoring two important global agreements which most of the countries in this region are signatories to namely:

The Convention on the Rights of Persons with Disabilities and
The Social Development Goals.

SPECIAL OLYMPICS … What it is

What could a sports organisation have to do with ensuring inclusion of Children and in fact all Persons with Disabilities?
I share some information on the incredible relevance of Special Olympics. However, before I start and because we are often confused with the Paralympics movement a moment for me to summarize who we are and what we do.
Special Olympics is world’s largest sports organization for people with intellectual disabilities:
Special Olympics provides year-round sports training and athletic competition in a variety of Olympic-type sports for children and adults with intellectual disabilities. We are not a 4 year event.
Our Athletes have continuing opportunities to develop physical fitness, demonstrate courage, experience joy and participate in a sharing of gifts, skills and friendship with their families, other Special Olympics athletes and the community.
The Special Olympics is on the brink of 50, we were founded in 1968 by Eunice Kennedy Shriver.
When I say Global movement you think sports, but I want to hit a few of our high notes, and you be clear this is not a sports organisation focused on a few ‘elite athletes’, some data again, bear with me:

5.3 million Partners in seven regions, including UNIFIED Partners
1.2 million Unified team mates
3.6 million young persons engaged in Youth Activation Councils globally, some of them there were this morning, young persons who volunteer to be a part this movement as activists for our message of respect and inclusion.
133,000 free health exams, and we have done a total of 1.7 million of these globally.Please recall a number earlier about access to health care for PWDs.
Worlds Games 2015, 20 billion had an opportunity to see our athletes compete through a range of traditional and social media.

Hold on to the numbers and the magnitude of our movement and I am going to share why supporting Special Olympics Programmes in your respective countries gives Children with Disabilities an opportunity for inclusion, and also gets your respective countries closer to honoring your commitments to the Convention and achieving SDG by 2030.

But specifically and for this event SO is well positioned to support us moving to “breaking barriers for an Inclusive Society for Children with Disabilities”, the theme for this conference.

Social Development Goals

Much what I do, not only for the community of persons with disabilities but for other vulnerable groups is guided by the SDGS. I am selecting seven of the 17 SDG which I believe are most closely related to Children with Disabilities and if we achieve these we are en-route to inclusion:

No poverty
Good Health and Well Being
Gender Equality
Decent Work and Economic Growth
Reduced Inequalities
Partnerships

As there is a time constraint I want to focus on the work of Special Olympics and how it addresses inclusion and three of the SDG.

The first is “the Reduction of Poverty”
The second “Good Health and Well-being”
And the third “Reduced Inequalities”

The Reality & How Special Olympics Addresses Poverty

Some facts

PWD make up 1 in 5 of the world’s poorest (Groce, 2011)
80% of PWD reside in low income countries (UNDP)
Disabilities impact families’ ability to earn
70 – 80% of PWDs are unemployed and truthfully are unemployable

SO Response to Poverty Reduction

We provide year round training and opportunities for persons with intellectual disabilities, an opportunity to build self-esteem, to be on the playing field of life, to increase in their confidence and abilities to perform in the classroom
What potential employers here in Belize and in I know in countries like St. Vincent & the Grenadines and St. Kitts & Nevis saw when the athletes when they returned from World Games 2015 were not ‘persons with disabilities’ but athletes and abilities, the perception began to change
We have a robust Athlete Leadership Programme which provides development opportunities for our athletes, builds their confidence and self-esteem for them to enter the work world.
We provide year round grants to our Programmes to bring together families to discuss their fears, the opportunities and how to support both their children and each other.

The Reality & How Special Olympics Addresses Health & wellness

Some Facts

The community of persons with intellectual disabilities is the single most excluded group for access to health care.
When you compare those who did not access adequate health care, 8.5% indicate the equipment was inadequate but for the community of PWDs, it was 18.7%.
5.1% of those without disabilities were denied but for those with disabilities it was 15.1%
56% of the doctors graduating in the US are not considered ‘competent’ to provide care to persons with disabilities.

SO Response to Access to Health & Wellness

Special Olympics is the single largest provider of health care screening in the world for persons with intellectual disabilities.
We screen our athletes in five areas including eyes, ears and teeth. This happens at both our Winter and Summer World Games, but it happens also at national games, here in the Caribbean and globally. And if you recall we have year round events you can appreciate how many screenings are don. There is more work and more support needed for us to increase the access to this opportunity.
HA promotes health and reduces health costs. The stories are unreal. But I want to share two in our Region. [Shared the stories of an Athlete from St. Kitts & Nevis and from St. Vincent & the Grenadines. For privacy purposes they are not included in the printed document.]

The Reality & How Special Olympics Addresses Inequality

Some Facts

Children and adults with intellectual disabilities face extreme exclusion, moreso in emerging economies like ours in the Caribbean. As they are less likely to learn in traditional learning spaces they are excluded from or have reduced access to education.
Children and adults with intellectual disabilities are subjected to ridicule and parents/family or caregivers opt to keep them home rather have them in public spaces.
Children with disabilities have reduced access to sports and opportunities to train and compete.

SO Response to Access to Health & Wellness

Special Olympics provides an opportunity as I indicated for training, but we have expanded this, we realise that while it is incredible for our athletes to showcase their abilities we have taken it a step further, we ‘train, play and compete unified’. You saw that this morning.

Inclusive sport promotes inclusive schooling
What is a unified team mate, for those who saw the game this morning there were at least 8 unified team mates on the field this morning that is athletes without disabilities playing with athletes with disabilities. Imagine what those partners left that game with a sense of, oh both Goal keepers were our athletes.
Through the power of sports, people with intellectual disabilities discover new strengths and abilities, skills and success. Our athletes find joy, confidence and fulfilment -- on the playing field and in life. They also inspire people in their communities and elsewhere to open their hearts to a wider world of human talents and potential.

I close by quoting our Vision and our Goal to make clear that SO is an incredible partner on the move towards breaking down some barriers, storming some barricades and marching towards ‘inclusion’ of Children with Disabilities

VISION

Social Change that results in full and effective participation in society for people with intellectual disabilities

GOAL

Expand social protection, inclusive policies and programming by transforming the way governments and the international development community identify, engage, commit resources, and serve people with intellectual disabilities.

ADVOCACY FOR CHANGE: POLICY TO PRACTICE

Presented by HON. PATRICK FABER

Good afternoon. It is truly a pleasure to be a part of this very distinguished panel to share some thoughts on Children With Disability on the theme, Advocacy for Change: From Policy to Practice.

For context, I begin with some history of services for persons with disabilities in Belize. Now this is rather lengthy, so I will only present selected milestones if you will: [Selected Milestones]

I think you will be able to conclude from those selected milestones that the journey of addressing the needs of children, indeed people with disabilities started a long time ago in Belize and though it has been slow, it has been steady.

You will have observed the steps taken to address the needs of persons with disabilities through establishing schools, training of and increase of Ministry of Education and school personnel to be better able to meet their needs, as well as some intermittent efforts to provide training that would enable such persons to lead productive independent lives. You will have also noted the paradigm shift that the Ministry of Education pursued as it changed the name of the Special Education Unit to the National Resource Centre for Inclusive Education (NaRCIE). This reflected a shift in GOB policy to inclusive education – that sought to mainstream children with disabilities within the constraints of what is possible in our context. This continues to be our push and today, we have at least 2 Special Education Officers per district who are there to support teachers in schools where children with disabilities are enrolled. This is not ideal but an improvement over what existed before. You will also note our continued attempts to train personnel in the Ministry to be able to more adequately respond to the needs of children with disabilities. The Ministry is also paying for interpreters for several students who have transitioned to high school or are attending our Institutes of Technical and Vocational Education. West Block, Belmopan Tel: (501) 822-2380/0385/2698 Belize Fax: (501) 822-3389 Central America E-mail: moeducation@moe.gov.bz Website:www.moe.gov.bz

What I describe to you is our attempt to meet the challenge of providing the enabling environment for children with disabilities to live and enjoy full lives in keeping with their God-given human rights. Such provision is not charity. It is recognition of these children, indeed persons, with disabilities as full human beings deserving of human rights like everyone else. Indeed, none of us is perfect and we all have our own disabilities and so it is in this spirit that we recognize children and persons with disabilities as deserving of the same opportunities to live and enjoy full lives.

The challenge we face in meeting the needs of children with disabilities reminds me of the opening paragraph of an article, of December 2013, written by Diana Farrell and Andrew Goodman entitled Government by design: Four Principles for a Better Public Sector. The article is posted on the McKinsey and Company website under insights and publications. It opens as follows, and I quote: Governments everywhere face a daunting paradox. On the one hand, they operate in an increasingly complex environment and must deliver on an expanded set of policy objectives. In a world characterized by macroeconomic uncertainty, rapid social change, and technological innovation, citizens’ expectations of what government ought to deliver are rising. On the other hand, governments are hampered by unsustainable debt burdens and shrinking budgets. The ratio of general government debt to gross domestic product for member states of the Organisation for Economic Co-operation and Development (OECD) now exceeds 100 percent. Meanwhile, public trust in government is eroding. Against this backdrop, not only must governments do more with less; they must do so in highly visible ways, if they are to regain the faith of their constituents. [End Quote]

I think that no one can question the commitment of the Government of Belize to rights of children with disabilities. The challenge is as Farrell and Goodman put it: doing more with less and doing so in highly visible ways! So as I consider this in light of the topic, Advocating for Change: From Policy to Practice allow me to point to some opportunities for advancing the rights of Children with Disabilities. West Block, Belmopan Tel: (501) 822-2380/0385/2698 Belize Fax: (501) 822-3389 Central America E-mail: moeducation@moe.gov.bz Website:www.moe.gov.bz

1. Policy and legislative framework: Belize signed and ratified the Convention on the Rights of Persons with Disabilities in 2011. And while our education legislation and our National Youth Policy1 makes reference to meeting the special needs of challenged pupils and of developing and expanding programmes for young people with disabilities, there is no specific legislation to govern their treatment. This represents an opportunity for action: putting in place the policy and legislation to govern the treatment of children, indeed persons, with disabilities. Some of the opportunities for putting in place policy include: • Improve the policies and enforce the regulations so schools cannot deny placement but that they seek the support to make inclusion possible • Develop a teacher career path that includes opportuntieis for teachers to specailise in fields such as special education and that they can serve a coordinators/leaders of special education in schools where they teach • Incentivize local teacher training institutions or partner with regional and international institutions to provide such specilisations as part of teacher continued professional development • School managements be required to made suitable accommodations, and seek support to include students with disabilities • Ensure that all new educational infrastructure cater for the needs of children with disabilities.

2. Making our efforts more highly visible: Promote and extend “Brightspots” in the provision for Children With Disabilities There are many examples of good practice, areas of strength that are already exist, we need to promote and spread these. For example: • Transitioning from primary to secondary for Deaf students - Presently we 7 deaf students in high schools • Several model schools that are inclusive across the country (e.g. St. Peter’s Anglican) 1 Education and Training Act Part VI, Section 49. (1): The Ministry shall ensure equitable access for both sexes to education at all levels, and that provision of education is sensitive to the particular needs of both males and females, and caters to the special needs of challenged pupils. From the Belize national Youth Policy Five priority areas Goal 2- Young people completing formal education, have access to opportunities for lifelong learning and possess life and livelihood skills especially developing and expanding programmes to rural communities for young people with disabilities and develop and implement programs to support gifted youth West Block, Belmopan Tel: (501) 822-2380/0385/2698 Belize Fax: (501) 822-3389 Central America E-mail: moeducation@moe.gov.bz Website:www.moe.gov.bz • More schools are now following the rules in regards to ramps and bathroom facilities to accommodate students with physical disabilities • Increased education and awareness have caused more parents to become more sensitive to the needs of their children and thus accessing services. • Many high schools support inclusion and made adaptations to the students report cards to allow them to obtain their high school certificate.

3. Doing more with less – an Intersectoral Approach We are already pursuing this approach in the area of Early Childhood Development in which the Ministries of Education, Health and Human Development are developing an Intersectoral Framework for delivery of Early Childhood Development services with a view to expanding coverage through greater efficiency and enhancing effectiveness of programming. The opportunity here for addressing the needs of children with disabilities is twofold: • First it will enable early identification of children with disabilities and coordinated and early intervention. • Second, this intersectoral approach can be extended to provision of services for children with disabilities more broadly.

Finally, on the matter of doing more with less, I would like to make a connection here with the first point I made with respect to the Policy and Legal Framework. I think in formulating such policy and legislative framework there is the need for practical judgments between what is desirable and ideal and what is within our capabilities to achieve. Often we have very lofty aspirations that right away become demotivating when we realize how far away achievement of those aspirations may be. What is needed in Policy is very clear articulation of core commitments – similar to the core commitments we have established for Early Childhood Development. Thank you for your attention

The Work on Disabilities in Guyana: A Cross-Sectoral Approach

Presented By H.E Mrs. Sandra Granger

Madam Moderator, Ms. Ann-Marie Williams;

Members of the Panel;

Distinguished Guests;

Ladies and Gentlemen;

I wish to first thank Mme Kim Simplis Barrow, Spouse of the Prime Minister, Special Envoy for Women and Children and Global Ambassador for Special Olympics of Belize and Mr. Ivan Yerovi, Belize Country Representative, United Nations Children’s Fund for inviting me to participate in this Conference on a Regional Partnership for Children with Disabilities.

As you are no doubt aware, it is very challenging for a small developing state to provide the resources required to address the needs of its citizens, more so its citizens with disabilities. The state therefore often relies on partnerships with public spirited citizens and local and international organisations to assist in the provision of such services.

Guyana has a small population which has hovered at around three-quarters of a million people. It is also challenged by the vast and varied geographic space it occupies, with some areas accessible only by plane or boat, and some needing all-weather roads to travel from coastland to hinterland. So the challenge in meeting the needs of children with disabilities increases in trying to serve those who live in hard-to-reach places.

Collaboration and a cross-sectoral approach to addressing the needs and ensuring the rights of these citizens therefore become imperative.

Article 7 of the UN Convention on the Rights of Persons with Disabilities specifically speaks to the Rights of Children –

“1. States Parties shall take all necessary measures to ensure the full enjoyment by children with disabilities of all human rights and fundamental freedoms on an equal basis with other children.

2. In all actions concerning children with disabilities, the best interests of the child shall be a primary consideration.

3. States Parties shall ensure that children with disabilities have the right to express their views freely on all matters affecting them, their views being given due weight in accordance with their age and maturity, on an equal basis with other children, and to be provided with disability and age-appropriate assistance to realize that right.”

Article 18:2 states that -“Children with disabilities shall be registered immediately after birth and shall have the right from birth to a name, the right to acquire a nationality and, as far as possible, the right to know and be cared for by their parents.”

In June 2010, Guyana passed the Persons with Disabilities Act which aims

“…to provide certain rights to persons with disabilities; to provide for the promotion and protection and full and equal enjoyment of the rights; to facilitate the enforcement of the rights; to eliminate discrimination on the basis of disability; to provide for the welfare and rehabilitation of persons with disabilities; to provide for the registration of persons with disabilities; to establish the National Commission on Disabilities; and for connected purposes.” Decisions under this Act, it is stated, should be informed by the United Nations Convention on the Rights of Persons with Disabilities.

The rights set out in the Guyana Act include the right to employment, education, health, housing and water, auxiliary social services, sports and recreation, communications, accessibility, and voting. In addition, the Act clearly states that

“A parent, guardian or next of kin shall not conceal a person with a disability in a manner as to deny that person the opportunities and services available under this Act.” (Sub-Part X para. 34.1),with the persons committing this offence liable on sum mary conviction to a fine not exceeding fifty thousand Guyana dollars, which is roughly equivalent two hundred and fifty United States dollars.

The Act recognises the importance of a cross-sectoral approach to dealing with these issues and ascribes to the relevant line ministries responsibilities relating to specific rights. However, it must be noted that there is, as yet, no policy that deals specifically with children with disabilities.

The National Commission on Disabilities established under this Act comprises twelve members appointed by the President including:

one each from the Ministries of Education, Foreign Affairs, Public Health, and Social Protection, including Labour;
three persons nominated by and from non-governmental organisations “directly and solely concerned with the welfare and advancement of persons with disabilities, two of who should be persons with disabilities;
one representative of organisations dealing with human rights;
one representative of organised labour;
one representative of the private sector; and
one member who has extensive experience as a care giver of persons with disabilities.

In my view, the Commission would benefit from collaboration with our Ministries of Communities and Public Infrastructure, respectively, since these could provide the infrastructure at the community and nation al levels to facilitate the access of children and adults with disabilities to their rights.

In accordance with its 2015-2019 strategic plan, the Commission is currently engaged in developing internal resources, as well as policies and procedures to support its activities. It is currently engaged in a pilot project in Administrative Region 6 – East Berbice/ Corentyne surveying the living conditions, needs, capacities and locations of persons with disabilities. It is anticipated that similar projects with be conducted in other regions upon completion of the Region 6 project.

The Government of Guyana, the private sector and several not for profit organisations collaborate to some extent to provide services catering to the needs of persons with disabilities.

In this regard -

The Ministry of Public Health of Guyana oversees three institutions established by the government which cater for persons with disabilities. These are:

The Ptolemy Reid Rehabilitation Centre, established in 1967 to provide rehabilitative services for children who had suffered residual paralysis due to the poliomyelitis epidemics of 1960 and 1964. With control and reduction in such cases, the Centre expanded its services to provide comprehensive rehabilitative programmes for children with various types of physical and other developmental disabilities. Included in the programmes offered are information and communication technology.

With the aim of expanding and providing quality service and improve resource acquisition, the Centre was delinked from the Ministryof Health and is now managed by a voluntary Management Committee.The government provides an annual subvention and professional staff while the Board raises funds to finance its operations locally and internationally. Its Orthotic and Workshop has expanded from only catering to the needs of the children at the Centre to potentially manufacturing almost any appliance required by a person living with a physical disability.

The Cheshire Home, Guyana’s first semi-independent residential facility for persons living with disabilities. It currently houses 25 young adults.
The Open Doors Centre caters for teenagers and young adults with disabilities who are capable of learning vocational skills. 30 students are presently enrolled in vocational training.

The Ministry of Education oversees the David Rose School for Handicapped Children which caters primarily to children with hearing impairment. There are also Special Needs Schools located at Diamond, on the East Bank of Demerara and at New Amsterdam in Berbice.

This year, the Starkey Foundation of the USA teamed up with the Audiology Department of the Ministry of Public Health to provide hearing aids to persons, including children, with this disability.

The Blind Institute caters to the needs of the visually challenged and provides training in braille and vocational skills.

The Ministry of Social Protection provides assistance to families with children with disabilities.

In 2011, the Step by Step Foundation, a registered not for profit organisation, set up the only school catering to children with Autism Spectrum Disorder. It is a model school which meets the best practice guidelines for children with ASD. Because of space limitations and the intensity, as of the beginning of this school year, the school increased the number of its students to 20. It is funded entirely through assistance from generous donations from the private sector and individuals and generous and committed US-based consultants.

The Ministry of Education recently donated a plot of land to the Foundation to build a school which can accommodate children with ASD and provide better training facilities. The Ministry and the Foundation are currently in discussions about extensive training for teachers as well as the development of peripatetic ASD teachers who can provide support to children with ASD in mainstream schools and classes.

Apart from social outreach programmes, the activities of international service organisations such as the Lions Club and Rotary International, for example, include projects aimed at vision and other impairments.

The United Women for Special Children Club is one organisation in Guyana which focusses specifically on partnering with institutions in the provision of resources for children with special needs. This organisation, registered in September 1993, provides support on a “needs” basis and has assisted in the training of older students of the Ptolemy Reid Rehabilitation Centre, the David Rose School for Handicapped Children – both in Georgetown- , the Special Needs School at Diamond on the East Bank Demerara, the New Amsterdam Special Needs School, the Deaf Association of Guyana, and the Open Doors Centre.

For the most part, the private sector and service organisations do not focus on supporting one specific entity or disability. However, Republic Bank is actively engaged with the Step by Step Foundation (educating children with ASD) and the Bank of Nova Scotia participates in fund-raising drives with the Periwinkle Club, which assists patients diagnosed with cancer.

Corporate bodies, organisations and individuals tend to respond to requests coming from individuals, groups and organisations. But those donations are not solely devoted to children with disabilities. They include sports events, concerts, prize-givings, fairs and so on.

It should also be noted that the facilities for children with special needs are mainly located in the more populated coastal region. It is hoped that with the conclusion of the surveys conducted by the National Commission on Disabilities more attention will be paid and access expanded to the children in the rural and hinterland regions who are in need of these services.

It is also anticipated that relevant training will be provided to facilitate the access of these children to equal employment; education; health; housing and water; auxiliary social services; sports and recreation; communications; accessibility to premises; and ultimately, voting.

The provision of these will require that persons in the above fields be trained specifically to cater to the needs of children with disabilities, particularly in the communities, health, housing, education, public infrastructure, and social services sectors. It will require conscious effort and planning on the part of those officials to ensure that the special needs of these citizens are adequately met.

I believe that children with disabilities may be best served through a collaborative approach where, for example, the Ministry of Health provides information to the Ministry of Social Protection on the age and status of the child’s health, so that the parents may access social assistance, if they so need. The Ministries of Communities, Public Infrastructure and Education can also be advised of the special needs of these children so that appropriate planning may be made for their induction and inclusion in the education system and into the communities in which they live.

Above all, there is need for timely, empirical data on the number, location and particular needs of children with disabilities so that our government agencies and institutions can receive a clear indication of the resources required to give these children a secure and comfortable life, and to plan accordingly.

We are taking these steps.

I believe that through dedication, hard work and collaboration we will achieve our goals.

Thank you.

Living With a Disability
Presented by Alexander Garbutt

My name is Alexander Garbutt. I am fourteen years old and I am the youngest person at my school. I attended Stella Maris School and I am now at Canaan Seventh Day Adventist School. I have a Learning Disability. This makes it hard sometimes for me to do my work. It takes me a longer time to understand things in the different subject areas. I work hard and always try my best and even though I have challenges I am able to do it if I focus and get special help from my teacher.

Growing up people would tease me and call me “retarded” and “dumb”, but I would ignore them because I knew I was a special child. When they teased me it made me try harder to show people that I could do the work. At Stella Maris I did Math, Language, Social Studies among other subjects. My teachers pushed me to work hard and to do and be the best I could. It was at Stella Maris; through the guidance of my teachers, I learned to read. I took the Primary School Examination and I did my best.

It is hard to be a person with a disability because sometimes people judge you and don’t want to be your friend. At time I meet people who don’t want to talk to me because they say I am weird. I still have people who call me “Stella High”, but that is okay because I am proud of the school I came from. They would talk to other people in my class and not to me and this makes me sad; but then I think about what I was taught and I remember “the hardest thing to change is the way people think”. I would like everyone to teach children about their disabilities so they can talk to others about it. This will help children with disabilities to be confident in themselves and what they can do.

Although I have a disability I don’t allow this to stop me from doing things I like. I am an excellent basketball player and I am good at gaming. I play games on my computer and I even have followers on YouTube. I post games that I play and win and people in the virtual world like and follow me. One of my favourite games to play is geometry dash.

Thank you for listening to my story. I want you to always think of children with disabilities as special people who are capable of doing anything they put their minds to. My wish is to one day become a police officer.

The Rights of the Child with Disabilities—From Early Childhood to Inclusive Education
Plenary Session I

Rights of a Child with Disabilities; Raising Awareness at the Decision Making Level

Presented By: Ms. Beverly Reynolds

Belize City

13 - 14 October 2016

Disabilities, Rights and Decision-makers

Disabilities:is a complex phenomenon, reflecting an interaction between features of a PWD and features of the society in which he or she lives Many and varied barriers hindering the full and effective participation of PWD in society on an equal basis with others

Purpose for raising awareness is to effect positive, sustained change in the quality of life for P/CWD and their families through ensuring all Rights are honoured.

It is generally accepted that it is the Governments’ duty to provide these Rights – the entitlements that belong to all human beings regardless of race, ethnicity, socio-economic class, abilities/disabilities

Raising Awareness at the Decision-making Level

Conference of the Heads of Government (CHOG)

The Bureau of the Conference

Community Council

Organs (Ministerial Level) – COHSOD, COTED, COFAP, CONSLE, COFCOR

Technical Level – officials from Member States

Civil Society, FBO, Special Interest groups

Concept/position papers

Sharing of concerns and experiences

The Reality

CWD are the among the poorest, most stigmatized and marginalized of all the world’s children

Many face rejection and isolation from birth; and expectations for life and achievement are reduced

Children with intellectual disability are 4 to 10 times more likely to be victims of violence (Dobsey et al; 95); victims of crime, and at twice the risk of physical and sexual abuse (Crosse et al; 1993), exploitation

Little or no access to reproductive health information, services, or programmes;

Lack of /limited access to education deprives them of opportunities to develop their full potential and to participate in society; and perpetuates the cycle of poverty their abilities are overlooked, their capacities are underestimated, and their needs are given low priority (UNICEF)

State Plus Interventions

Addressing underlying factors which State interventions alone cannot change (e.g. cultural practices in treating with persons with disabilities)

Widen the base of those persons considered as ‘decision-makers’

Advocacy

Champions who will work on behalf of CWD and their families, to raise awareness of their situation and concerns and to promote solutions to the issue

State + Interventions

Champions who have the ability to Influence others bearing in mind that influence is built on competence, credibility, and trustworthiness

Communication and public education

Putting a ‘human face’ on the issue

Collaboration

working with others to achieve a common goal

Practicing the guiding principles for successful collaboration - trust, mutual respect, and credibility.

Early Childhood Development: Progressive Milestones Starting at Home
Presented By: Mr. Garren Lumpkin

TO BE INSERTED

The Cross-Sectoral Approach— Response to the Barriers that Affect Children with Disabilities in the Social and Education Sectors and in Emergencies

Plenary Session II

Addressing The Barriers For Children With Disabilities In The Education Sector

The Cross-sectoral Approach—Response To The Barriers That Affect Children With Disabilities In The Education Sector.

Presented By: Mr. David Leacock

June 2016- 792 clients; 213 referrals
Teachers use the National Primary Curriculum, with adaptations and the Life Centred Career Education Curriculum
Some training provided for teachers in curriculum plus skills – Braille, sign language etc.
Some deaf students are in inclusive classrooms with the aid of an untrained, uncertified “interpreter”. Seven presently enrolled in high schools

BARRIERS & GAPS
Schools Not Prepared To Accommodate CWD
School Infrastructure not built to accommmodate CWD
Teachers not trained and schools challenged in terms of appropriate policies, ethos and support systems for children with disabilities – unable to cope with and/or uncomfortable/afraid of accommodating CWD
Lack of programmes for children and youths with disabilities for transitioning to the productive sector and independent, productive lives

BARRIERS & GAPS
Parents Unable To Cope With CWD
May withhold the child from school because of stigma and fear of discrimination
Not knowledgeable and skilled in caring for a child with disability – and in exceptional circumstances may significantly challenge their capacity to manage life demands
Insufficient support to parents (lack of coordinated approach across sectors)

BARRIERS & GAPS
Parents Unable To Cope With CWD
May withhold the child from school because of stigma and fear of discrimination
Not knowledgeable and skilled in caring for a child with disability – and in exceptional circumstances may significantly challenge their capacity to manage life demands
Insufficient support to parents (lack of coordinated approach across sectors)
Referral systems not fully developed for CWD

BARRIERS & GAPS
Lack of Data/Information on Which to Base Decision-making
No evidence of any data collected with respect to CWDs in the 2010 Census
MOE does collect information but only on clients
Management Information Systems exist or are being developed in various Ministries but as yet no established protocols and systems for these databases to be able to ‘talk to each other’

RESPONDING TO THE CHALLENGES:
THE NEED FOR AN INTERSECTORAL APPROACH

Early Childhood Care and Education

Opportunities in nurturing environments where children can learn what they need to succeed in school and life.

SAFE SUPPORTIVE LEARNING ENVIRONMENTS IN SCHOOLS BEYOND EARLY CHILDHOOD CARE AND EDUCATION
STANDARDS, GUIDANCE AND SUPPORT IN DEVELOPING SUCH ENVIRONMENTS (POLICIES, SYSTEMS, ETHOS) BY EDUCATION SUPPORT SERVICES OF THE MOE
TRAINING OF TEACHERS, PRINCIPALS, AND PUBLIC SECTOR OFFICERS (E.G. PROFESSIONAL DEVELOPMENT FOR TEACHERS AND CAREER PATHWAYS FOR PROFESSIONALIZATION IN FIELDS RELATED TO CWD)
PROGRAMMES FOR CHILDREN AND YOUTHS WITH DISABILITIES FOR TRANSITIONING TO THE PRODUCTIVE SECTOR AND INDEPENDENT, PRODUCTIVE LIVES
STANDARDS AND ENFORCEMENT FOR SCHOOL INFRASTRUCTURE TO MEET NEEDS OF CWD
Health, Mental Health and Nutrition

Comprehensive health services that meets children’s vision, hearing, nutritional, behavoiural and oral health as well as medical health needs.

PREVENTION THRU’ PRE/POST NATAL CARE OF MOTHER AND BABY
REGULAR HEALTH CHECK-UPS OF THE CHILD AS THE CHILD GROWS/DEVELOPS
Special Needs Early Intervention

Early identification, assessment and appropriate services for children with special health care needs, disabilities or developmental delays

INTERSECTORAL COLLABORATION IN EARLY IDENTIFICATION, ASSESSMENT AND INTERVENTION FOR CWDs (MOE DEVELOPING ASSESSMENT FOR INFANT 1 BUT NEEDS TO BE LINKED TO ASSESSMENTS DONE BY OTHER MINISTRIES)
MORE EFFECTIVE AND EXTENSIVE REFERRAL SYSTEMS (e.g. CURRENTLY CWDs IN 2 NORTHERN DISTRICTS GIVEN ID CARDS THAT ENABLE IMMEDIATE ACCESS TO HEALTH SERVICES & REDUCED FEES)
COLLECTION OF DATA ON CWD, TRACKING AND MONITORING OF INDIVIDUALS AND OF POPULATION

Economic and parenting supports to ensure children have nurturing and stable relationships with caring adults

COMMON PARENTAL INFORMATION AND EDUCATION ACROSS MOE, MOH, MHD
MORE EFFECTIVE AND EXTENDED REFERRAL & SUPPORT SYSTEMS
STRENGTHENING OF DISTRICT ASSOCIATIONS FOR PARENTS OF CHILDREN WITH DISABILITIES
FORMATION OF A NATIONAL PARENTS ASSOCIATION FOR CHILDREN WITH DISABILITIES
RESPONDING IN A COMPLEX ENVIRONMENT

Governments everywhere face a daunting paradox. On the one hand, they operate in an increasingly complex environment and must deliver on an expanded set of policy objectives...

Against this backdrop, not only must governments do more with less; they must do so in highly visible ways, if they are to regain the faith of their constituents.

Doing More With Less & With Greater Visibility

Creativity and Innovativeness

Practical judgments between what is worth wanting/ideal and what is within our capacity to achieve

Addressing the Barriers for Children with Disabilities in the Social Sector
Presented by: Mrs. Lliani Arthurs

Participation and Protection of Persons with Disability in Emergencies and Disasters in Central America
Mr. Gerardo Quiros Cuadra

TO BE INSERTED

ZIKA and its Impact on Affected Children in the Region

Plenary Session III

Presented By: Dr. Armando Vasquez
Zika and its impact on children: In recent years, fundamentally since the Ebola virus broke into our society and perceive the real risk of the spread of emerging infectious diseases, several international alerts by imported diseases have occurred; the most recent produced by arboviruses such as dengue or chikungunya. The current alert, is the Zika fever virus; almost unknown until the recent epidemic in Latin America and the Caribbean and with unexpected association and severity of neurological manifestations in neonates and causal suspicion between Zika and microcephaly. For this reason it is declared by the World Health Organization (WHO) in February 2016 "International Public Health Emergency" with great impact on morbidity in children. Zika virus is a flavivirus transmitted by mosquitoes that was first identified in macaques (Uganda, 1947), through a monitoring network of yellow fever. Later, in 1952, it was identified in humans in Uganda and the Republic of Tanzania. There have been outbreaks of this virus disease in Africa, the Americas, Asia and the Pacific. Between the decade of the sixties and eighties, human infections in Africa and Asia were detected, usually accompanied by mild disease.. The first major outbreak occurred on the island of Yap (Federated States of Micronesia) in 2007. In July 2015, Brazil reported an association between infection with the virus Zika and Guillain-Barré syndrome, and in October the same year its association with microcephaly. Following a comprehensive review of the data, it has reached a scientific consensus about the causal relationship between Zika virus and microcephaly and Guillain-Barré syndrome. Continuing intensive efforts to rigorous investigation of the relationship between this virus and other neurological disorders. Zika virus is mainly transmitted to people through the bite of infected Aedes mosquitoes gender, and especially Aedes aegypti in tropical regions. Aedes mosquitoes usually bite during the day and are the same that transmit dengue, chikungunya and yellow fever. It is also possible sexual transmission, and are under investigation other modes of transmission such as blood transfusions. Zika virus can be transmitted during a sexual relation, a fact that is worrying because there is an association between virus infection and the presence of adverse pregnancy outcomes and damage to the fetus. Zika virus epidemic is news in the media worldwide. Researchers are working to discover more about the virus and health authorities try to present the potentially devastating impact of this virus, without causing undue alarm. The current outbreak of Zika was first detected in Brazil in 2015 and health officials estimate that could infect up to 4 million people in the Americas. Currently, the Aedes aegypti mosquito is transmitting the virus in 57 countries and territories, 38 of them in the Americas. Sexual transmission of the virus has been confirmed in 9 countries and has reported nearly 1,300 cases of microcephaly or birth defects, mostly in Brazil. Impact on children: When a pregnant woman is infected, the virus can cause microcephaly, a rare birth defect characterized by the small size of the head and underdeveloped brain in newborns, as well as a number of other neurological and developmental disorders potentially severe. So far, the country hardest hit by the outbreak is Brazil, but they have been reported high rates of infection in Colombia. The virus is spreading rapidly in Puerto Rico. Health officials in the United States fear local outbreaks, especially along the coast of the Gulf of Mexico, Houston and Galveston, Texas, New Orleans and Florida areas are particularly vulnerable, given the high concentrations of mosquitoes that may carry the virus. The spread of the virus Zika in America would affect dozens of thousands of children over the next year, with a broad spectrum of neurological and psychiatric problems that will require a new approach to treatment. Dr. Peter Hotez, of the National School of Tropical Medicine at Baylor University, published in the medical journal JAMA Pediatrics that would quickly mobilize a range of pediatric specialists, including neurologists and rehabilitation experts in order to anticipate the Zika. "We have to educate and train a new generation of primary care providers," Hotez wrote. "We have to assemble interdisciplinary teams of pediatric (...) specialists, we will need new child support programs." Coinciding with the epidemic in the Americas has been demonstrated an unusual increase in autoimmune Guillain-Barré syndrome in adults and congenital microcephaly in newborns from infected mothers by Zika during pregnancy, with serious neurological disorders described associated with this entity, such as mental retardation and motor. This is undoubtedly the greatest global public health impact of the disease by Zika, commonly known by pediatricians as a congenital viral infection, with such classics as rubella or cytomegalovirus and chikungunya models. The reasons why in initial periods of the impact of the epidemic associated with microcephaly was not described are unknown; environment, genetics and particularly more virulent strains of Zika may be involved in this selective behavior. In March 2016, it was published a report on infection in pregnant women during the epidemic Zika in Brazil, which includes pregnant with rash between 5-38 weeks of gestation; 88% with Zika blood, urine or both. Doppler ultrasound in pregnant Zika positive and negative is compared and confirming alterations in 29% from the positive fetuses and none of the negative. It was described two fetal deaths, intrauterine growth retardation, microcephaly, ventricular calcifications and other lesions of the central nervous system (CNS). In April posmorten isolation of Zika virus was confirmed in the central nervous system from a newborn with neurological involvement, son of infected mother to the 11th week of gestation, head circumference decreased from 47 percentile 24 percentile is confirmed between 16-20 weeks and polymerase chain reaction (PCR) positive for Zika and Zika-IgG and IgM positive maternal blood. In addition to severe microcephaly, the fetus has brain atrophy, hydrocephalus and calcifications, which had already been shown in utero by ultrasound and resonance. The most common finding is the global developmental delay in early childhood, later associated with intellectual disability. Nearly all children with severe microcephaly have lower intellectual performance and, considering the microcephaly from mild to severe, the percentage is close to 70% of cases. Other clinical findings are epilepsy (28% to 43%), cerebral palsy (21.4%), language delay (33%), ophthalmologic disorders (30%) and finally, in the following order, hearing, heart, kidney and skeletal disorders. Therapeutic approach: Microcephaly is a chronic condition that has consequences throughout life and has no specific treatment. Mild forms cannot be associated with other neurological disorders and justify clinical monitoring of growth and development of children affected. Severe forms are associated with neurodevelopmental disorders, such as global developmental delay, mental retardation, motor disorders, epilepsy and sensory deficits. While there is no specific action to improve brain growth interventions, secondary microcephaly can be prevented in some cases of neurometabolic conditions, for example, phenylketonuria. In cases of malnutrition during pregnancy and birth, we must provide adequate nutritional support. With regard to breastfeeding, PAHO / WHO recommends start it for the first hour of birth; Breastfeeding is also recommended exclusively for the first six months of life and timely, adequate and safe complementary feeding while breastfeeding continues up to two years of age or older. These recommendations are still valid in relation to the Zika virus and cover mothers and families of newborns with congenital malformations (eg microcephaly), which should be supported to initiate and sustain breastfeeding and, if necessary, specialized support feeding. Children with microcephaly should be referred to a stimulation and early intervention center where it can begin a program of comprehensive care involving multidisciplinary teams that include professionals as pediatricians, neurodevelopmental specialists and physiatry and other rehabilitation professionals. In such centers, interdisciplinary treatment includes phonoaudiological intervention to improve feeding and swallowing, social and verbal communication, physical therapy for psychomotor development and psychological care for the family, so to prevent and treat emotional disorders of children and family. This procedure begins at birth and is intended to enhance child development with adequate environmental stimulation and to involve their parents or caregivers to improve neuropsychological development in all its components, ie, communication, motor, cognitive and affective. A systematic review of the evidence on this issue confirms the positive effects of early intervention in child neurodevelopment. The active participation of the family is essential in the process of habilitation / rehabilitation. When children are cared for outpatient program and stimulation in their natural environment, the positive effects are maximized. Identifying a genetic pathology, family counseling required by geneticist. If detected or suspected environmental factor, such as alcohol or drug abuse, exposure to heavy metals or other teratogens, is justified to get familiar advice to prevent such problems from recurring in future pregnancies.

Best Practices and Lessons Learned for an Inclusive Society for Children with Disabilities

Plenary Session IV

The CHILD DEVELOPMENT
AND GUIDANCE CENTRE:
An Early Intervention Service Provider
for Children in St. Lucia
Presented by Aretha Cooper

ST. LUCIA STATISTICS: Census 2010 and MICS 2012
Total Population: 166 526
Total 0-4 years population: 11 810
85% of children 36 -59 months attend preschool

OUTLINE

To provide an overview of history of CDGC’s development as an NGO and its role in early intervention services in St. Lucia.
To describe CDGC’s current operations and services.
To highlight key partners and collaborative relationships with government agencies.
To highlight some challenges of the organization and children with disabilities in St. Lucia.

CDGC: Our Mission

The Child Development and Guidance Centre,

established in 1998, is a registered

non-profit organization and

the only facility of its kind in St. Lucia.

Its mission is to provide assessment and early

intervention therapy services to children with

developmental delays and disabilities in

order to maximize their potential.

CDGC in its infancy

CDGC: A National Service

The CDGC is a national service for St. Lucia; achieved with no government funding or permanent therapy team for the first decade. Strong vision and dedicated collaboration with community, regional and international partners made this attainable and it is hoped that this serves as an inspiration for other developing countries.

Staffing
One Full-Time Paediatrician
One Full-Time Clinical Psychologist
One Full-Time Paediatric Physiotherapist
On Full-Time Administrative Assistant

Visiting Volunteer Occupational and Speech and Language therapists

(3-6 months contracts)
Provide with monthly stipend for living expenses
Typically from the UK

SERVICES PROVIDED
Diagnostic developmental and psycho-educational evaluations
Therapeutic interventions
Speech and Language Therapy
Physiotherapy
Occupational Therapy
Behaviour Intervention
Supportive counselling for families
Facilitating access to preschool and primary education.

Referral Process
Anyone can refer through a phone call to the CDGC to give key information about the child and the causes for concern.
Most referrals come from the CCHS including the Community Health Nurses (79) and Community Paediatrician (1) who visits each health region monthly (8 health regions)

Other referrals
Private Paediatricians (6)
Hospital Doctors and Nurses
Preschool teachers
Parents

Developmental Surveillance and Screening
There is an established system of screening for developmental delays and disabilities within the community based health centres. Any child for which there is concern is referred directly to CDGC for comprehensive assessment and intervention.
The Surveillance and screening procedures are carried out by the community health nurses.
In January 2013 a neonatal monitoring program of at risk infants was established and children with various perinatal risk factors are referred for developmental assessment, intervention and monitoring.

Screening Procedures

Manual for surveillance and screening created by CDGC
Developmental Surveillance at every health visit
Developmental screening at 6 weeks, 8 months, 18 months, 3 years and 5 years
Children who fail to meet developmental norms or for whom there is concern get referred to CDGC for developmental assessment, diagnosis and intervention.

Assessment/Diagnostic Procedures

There are set fees for services however this is reduced or waived for human services clients, unemployed parents or when parents state they are unable to pay.
Children 0-18 years
Individual or multidisciplinary assessments are conducted using standardized and informal assessment procedures such as observation of children in play and adapted assessments.
Assessment tools include:
Standardized questionnaires e.g. GARS, ASQ,
Cognitive tests e.g. WPPSI-III, WISC-IV, WASI,NEPSY, WNV
Therapy Assessment tools, e.g. BOT, CELF-IV,
Standardized Developmental Assessment tools for e.g. Bayley’s Scales of Infant Development.

Some Statistics

1450 children assessed from 1998-2015. Records in our database. Active Caseload: 311 children

INTERVENTION METHODOLOGY

The type and frequency of intervention is determined by the child’s level of impairment and indicators of progress.
A high level of parent education, support, and training needed on normal development, developmentally appropriate practices and positive discipline.
Dosage of therapy: Typically 1 hour weekly including parents in sessions with child. It is recognized that empirically based practice in US, UK and Europe dictates more intensive input for some diagnoses (minimum, 3 times a week for 6 weeks)
Outcome measures: SMART Targets, GAS

Rationale for this model:

High referral rates
Limited education of parents
Accessibility (transportation costs, location, public transportation limitations
National perceptions of special needs children and employers attitudes
VOLUNTEERS AND TRAINING
Volunteers typically from Europe, Australia, UK and US
Volunteers given stipend that contributes to their living expenses
Volunteer therapists must have 5 years or more of experience including work with paediatric populations.
Therapists must have specialist training
Physiotherapists: Bobath and Bayley’s
Speech and Language Therapists: PECS, TEACCH
Occupational Therapists: Sensory Integration Training
CURRENT CASELOADS 2016
THERAPY SERVICES

Physiotherapy:

Helps children to move as independently as possible.

THERAPY SERVICES

Occupational Therapy : Helps children to master daily living skills and help themselves.

THERAPY SERVICES

Speech and Language therapy: Helps children to communicate

Related Services and
Specialist Clinics
Initiatives to promote Inclusion and raise awareness
Sporting and Fundraising Events: e.g. fun walks and triathlons
Media appearances and participation in three documentaries on disability which covered autism, cerebral palsy and, developmental disabilities and special education.
Involvement in seminars and conferences. For example, first ever Autism Awareness Conference was held in St. Lucia October 2016. Organized by a parent of two children with autism.
Partnerships with Parent Advocacy groups including the Cerebral Palsy Association of St. Lucia and the Autism Society of St. Lucia.

CDGC: Professional Partners AGENCIES

UNICEF
World Paediatric Project
Pan-American Health Organisation (PAHO)
University of the West Indies (UWI)

COUNCILS AND COMMITTEES:

National Child Development Committee
National Child Protection Committee

GOVERNMENT AGENCIES:

Ministry of Health/ Community Child Health Service
Ministry of Education
Ministry of Social Transformation

Relationship with Government Agencies and Committees
National Child Development Committee established in 2013
CDGC initiative: Representatives from special education, community child health (CCHS), National Council of and for Persons with Disabilities (NCPD), Human Services-Ministry of Health, St. Lucia Blind Welfare Association SLBWA.
First Project: The Dunnottar School Program for children with multiple disabilities and visually impairment.
National Child Protection Committee established in 2013
Ministry of Health initiative
Dr Gardner, CGDC’s director is a board member
Disability Allowance Grant
CDGC and CCHS provide the developmental and medical evaluations to determine eligibility for the disability grant.
GOVERNMENT SUPPORTED SERVICES FOR CHILDREN

UNDER 5 AND CHILDREN WITH DEVELOPMENTAL DELAYS AND DISABILITIES.

CDGC receives a subvention that covers approximately half of its

annual budget.

Some Pre-school & Day Care Services supported by the government.
Four Special Education Schools and Two special part-time programs for children with multiple disabilities including visual impairment. Total enrolment around 400 children.
Ministry of Education’s Special Education Unit receives full government support.
The St. Lucia Blind Welfare Association SLBWA receives an annual government

subvention to facilitated support for the visually impaired, free vision assessments

and access to specialist vision services.

Hearing Testing-Two Health Centres, one in north and one in south of the island

specialize in the screening of hearing problems (Field Hearing Assessment)

CDGC SERVES AS A BRIDGE BETWEEN HEALTH AND EDUCATION

Specifically by:

Training of community nurses in developmental screening. Developmental screening results are reviewed at kindergarten entry and completion of the 5 year screening is required by the school before child is 5 ½ years.
For those referred, determining school readiness and the level of special education support needed for children 5 and under or those who have never been to school regardless of age.
Training of early childhood practitioners in identification of children with developmental delays and procedures for referral.
Outreach work to preschools, general education, and special education schools which involves:
Sharing outcomes of assessments
Therapy advice and programs
Recommendations on the child‘s educational and social emotional needs.
Member of the Multidisciplinary Team (MDT) chaired by the Special Education Unit of the Ministry of Education.
The MDT presides on matters related to eligibility for special education services and special school placement

Challenges to CDGC
Accessing funding for ongoing operational expenses including therapists salaries.
Based on the estimates from the MICS 2012 report, a significant number of children are not being identified for services. Possible reasons include: Sensitivity of screening tools, issues related to the training of community nurses, children not undergoing screening at key ages.
In delivering intervention extra time has to be devoted to educating parents about basic child development and appropriate child rearing practices such as how to play with their children and what activities and toys are developmentally appropriate for their children. This reduces the efficiency of the services because more specialist input cannot be provided until core components are in place. Broader initiatives to educate parents are needed.

Challenges to CDGC

There has not been and currently are no permanent resident paediatric SLTs and OTs in St. Lucia.
Lack of resident therapists is still the area of greatest need and concern because of the following disadvantages:
Continuity of care
Cultural and language differences between temporary therapists and St. Lucia population
Administrative and resource demands with changing staff frequently.

Educational Issues:
Not enough appropriate placements
Transportation costs
Provision of teaching aides and specialist support for educational needs to be adequately addressed in general education settings
Public awareness and sensitivity to issues affecting children and families living with disabilities
Inadequate Social/Financial Support for Families

THE TIME IS NOW
Last week our team saw a 12 year old boy with autism from another OECS island. His family had recently relocated to St. Lucia. He had been diagnosed at 5 years old, past the prime age of early intervention. Most of his language was non functional that is he was unable to communicate his basic wants and needs or to answer simple questions like how old are you? His story is heart breaking because with early identification and intervention his outcome would likely have been much more positive and he would have been closer to achieving his true potential.

Key Factors contributing to the success of CDGC
Committed passionate professionals to drive movement.
Partnerships with other NGOs both locally, regionally and internationally for funding, and technical support.
A comprehensive data collection system and analysis of our data allows us to quantify the needs of our children and account for the efficacy of our services.
Government support is key for growth and sustainability.
Promotion and support for Parent Advocacy groups.
Regularly engaging with the media to sensitize the public on issues related to disability.
Inclusion of children and persons with disability in sporting, social and community activities and events has increased public awareness and support for the centre.

CONCLUSION

Today CDGC exists because of the collective effort and commitment of many volunteers and organizations for over 18 years.

CDGC‘s success exemplifies the value of teamwork and perseverance and it is our hope to inspire and guide other organizations to build upon their vision for children with disabilities in their developing countries.

Our Journey with Zayne
Presented by Ms. Marisela Craig, Parent of a Child With a Disability

Imagine a place where there was limited understanding on how to care and love for children with disabilities? A place where collaborative efforts would be lacking? A place where hearts are absent for the beauty that lies within each child with a disability? I simply cannot imagine! Let’s take off our rose-coloured glasses and face facts. We are all on a journey facing more trials and tribulations than before; a journey that most parents are undertaking without support or encouragement. It is one with no maps and many oh so unwanted detours. This journey to an unknown destination not knowing how much we can enjoy ourselves or if even a thing is possible. Let’s face it being a parent is hard! Being a parent to a child with special needs is “extra” hard. It can also be “extra” rewarding if we allow ourselves to look deep and see the beauty that lies within.

My family and I have been on this journey with our son, Zayne, who has Down Syndrome. We have met many people along the way, maybe not with the same symptoms, but with very similar challenges.

I will never forget Dr. Eck’s humour when he came and diagnosed Zayne and affirmed that he did indeed have Down Syndrome and said, “ Don’t worry he will only be short, fat and cute like myself.” I could only chuckle at that moment as I had only just had a C-section. Those words, reassured me that life would be okay. At our first check up he gave me another piece of advice: “What you put in is what you will get out.” Even today I remember those words and that has become my mantra with Zayne.

I am also grateful for the encouragement of Dr. Gough who called me into his office before discharging us from Buttonwood Bay Medical Center. He also gave me very sound advice. Yes, I have son with Down Syndrome but Down Syndrome is not my life and everything does not revolve around Down Syndrome. He said, “Remember you have a husband and a young daughter. You will still need to make tortillas for them. (Which I did only a couple of days ago). You will still need to spend time with them. (Which at times I have to still remind myself) You will become an expert on Down Syndrome but do not become obsessive about it. You will become an advocate for your son but you will also need to live your life. These medical experts helped put perspective in my life.

We have been extremely lucky with Zayne, as he doesn’t face chronic health issues, but not all parents out there can say the same. In fact, I many times voice that I am not the face of special needs, as our journey is different from many families that I have encountered over the last three years. Zayne is meeting many milestones, attends school, and has the opportunities to live an almost “typical” life. But how many families can vouch for the same?

I have spent hours researching and re-researching for the best techniques and therapy that would benefit our son. To help Zayne walk, we used a box from one of my daughter’s toys and a towel. After hours upon hours of physical therapy, Zayne walked at 13 months. With my husband loving support and tenacity, Zayne is able to run, kick a ball, and ride a bike, and was fully potty trained before the age of two. He also does weekly swimming and music lessons. And yes, I do realize this is not representative of a special needs child, especially in our country where opportunities and finances are limited. Don’t get me wrong, life isn’t a bed of roses, we certainly don’t wear rose-coloured glasses. We face our challenges and trials daily. Who doesn’t? But we persevere and try to make the best of each situation.

Through speech therapy and early interventions he is now stringing along three word sentences. He believes he is Mike the Knight and has special powers. My favourite anecdote is him going around the house saying I Mike the Knight –no bathe. I Mike the Knight – no eat. And me of course telling him, “You will be the first knight whose mommy will spank your little behind.

I cannot say who discovered whom. Whether it was me discovering Inspiration Center or Inspiration Center discovering us or a cosmic collision, but another door was opened to us. We got formal speech therapy and again we were lucky: Zayne was not yet two when he started.

It is amazing to know that there is a place in our BELIZE that offers the services we parents need. The Inspiration Center has played such a role in ushering a paradigm that allows many to understand and see the true potential children with disabilities possess. But while they play an instrumental role and offer the best in their services, they are still limited.

We understand and know that there is more that can be done. We need more speech therapists to help with the daunting numbers of children who are still on the waiting list. There is also a demand for behavioural and occupational therapists. Research has clearly shown that early intervention provide the foundation upon which cognitive and language skills develop. It goes on to reiterate that early intervention can improve outcomes for children, families and the community.

We would like to march forward positively knowing that one day our government can provide better health programs with trained medical paediatric specialists who understand how to treat children with special needs. In this regard, I would personally like to thank World Pediatric Project, whose team of doctors make their yearly pilgrimage to Belize to offer their services to children free of charge. Zayne attends all these clinics yearly. We need more organizations like WPP.

Nationally we also need to raise awareness, acceptance, and understanding while at the same time bringing out the best in each child with a disability.

Nationally, we need more programs, more acceptance from the general public, more trained teachers, and more developed special education program in all schools. Stella Maris, while known for its special education program, should not be the only option for formal schooling. Parents should have choices. Integration and inclusion in all schools should be implemented.

Yes, there is a lot to accomplish yet, as we champion and advocate for the best for our children. I hope to one day see implemented a Disability Act and Disability Education Act as part of our laws.

Nationally, we need a formal organization with an up-to- date website for each disability. We would like to see a National Down Syndrome Society, A National Autism Organization, A National Cerebral Palsy Organization… the list goes on.

There is also the need for parent-directed community-based organizations, which empower families with services, information, and training to support the health, education and development of special needs children at home and in society.

There is much to be done, much to be accomplished.

This is my personal message to parents: Do not lose hope or your dreams. Do not be discouraged nor dispirited. Most importantly, keep GOD first and the rest will be added in the equation. We can certainly break barriers and create positive change so our children can have as normal a life as possible. Someone once beautifully penned this quote, “ I won’t change the way my child views the world, instead, I will change the way the world views my child.

My Lessons as a Mother
Presented by Ms. Maureen Webber

Advocate

You have to be willing to advocate, you have to make the time and the space, no matter how tired you are and how much time it takes you.

One experience:

My son was removed from my health insurance when I checked I was told that at 18 he has to be in school or at work. I told the lady that makes no sense. She says that is the rule. Not for me I said, and I called the CEO, who is a reasonable man and a friend, he said he could make that adjustment for myself and Brian, I said no Richard, you know me better than that, I want that for every parent like myself. That got changed. Ended that exclusion from access to health insurance.

Participate

You have to make the time, to help with key development milestones. They told me based on limited motor skills Brian would never be able to feed himself. I thought child, I am going to be sitting there feeding you and feeding myself when we old, no way. I actioned. At that time A-K was learning to feed herself and it hit me, I wrote down all her stages, there were 18, observed her over a two month period. Then I looked at my list and saw where B was and took almost 6 months off from work and today he self feeds, no knife of course but we are there. So we go out for dinner and have a grand time, we travel, yes all the way to places like Vanuatu, Washington DC. So we have to put in the time to ensure the inclusion.

Learn to Laugh

When you do you find it easier to include your child. Brian is incontinent. A-K and I went to a birthday party for a friend of mine, the Mayor of KSAC. A-K and I know when it is time ‘when there is a No. 2 happening’. As we are getting ready to get into the party mood we realise the hour is at hand. We not going home, we go out to the van where we are prepared for this. First open both doors to create for privacy. Bag is ready for disposal and A-K begins passing me wipes. She says mummy ‘be sure he has finished’ I say ‘all good man he is done’. We are doing well, clean-up is underway, then bam, I feel a stream of warm water, it is all over my legs. Anna-K burst into laughter and I with her, we finish addressing the needs of the Mighty B and I find a pipe, wash my leg off and we re-join the party. We not missing a party.

All things are possible

We are enroute to St. Kitts & Nevis for December Carnival. Yes that would include Brian. Did you know you can change and clean a 22 year old in those tiny bathrooms on the flight?

Reject

We get to hear people saying how much they are doing for ‘us’. But we know our world we know our reality, we know our exclusion. We must not settle, that has been my lesson. This is not just about advocacy, it is about being able to state clearly what is and what is not. Don’t be angry, don’t be upset, they don’t get it, they are not in your shoes, reject from a position of respect and love.

My Lessons as a Sibling

A child like Brian needs a mother like my mummy because she never hears the word no, and she has banished the thought of what Brian cannot do and focuses on what we can do to help him to move ahead. If we are going to get inclusion it has to start with the family and friends of the family. They keep things moving when mummy is travelling for work. They are equally committed to Brian’s inclusion, but also help us. I recall when my aunt in Florida took Brian for an entire year, it was great, time out for Mummy, Lord she needed that. So if we want to talk inclusion please provide us with some opportunities for respite care.

My Friends have to GET IT.

My friends know that Brian is a part of my life, they know who is and about him. So when they come into our home, yes Brian does not speak, does not understand words, they come in and have full conversations with him. Ask him how his day is. I am already clear, if a young man is interested in me, or maybe as I get older a man, he has to know Brian is a part of me. I hear about the incredible opportunities in the US but we are here, and he is mine. I think if we want to talk inclusion there needs to be a national effort to tell people that persons with disabilities are first and all persons.

Siblings Matter

I am grateful that my mother has not thought that getting Brian included does not mean that I am excluded. I get to be a part of the decisions for Brian. I look forward to 2017 when Mummy and I will have shared guardianship of Brian, ever the planner she wants to be sure that there is someone who loves him. But she is ever so careful that I get to live and do things separately. I think it is because there was someone in her parent support group whose daughter took her life because there was so much attention on her brother.

Know no Barriers

We visited a friend who had a horses and I was petting one, Brian as usual who does not interact with animals stood back. When I stopped, he took my hand and put it back on the horses face and moved my hand to stroke the horse, the next thing I knew he took my hand away and he started stroking the horse, and we were all stunned. Mummy’s friend had Brian ‘work’ on the farm for a year. Then she had a new dream, Brian would ride a horse. She round a trainer and he begun the process. It is far and we have to have a taxi take him out. I went the first few times and I thought, will this work. The day he mounted the horse I was there. Today Brian rides a horse. When the cost went up and mummy said we would need to cut back, I just started turning off more lights in the house, and we have a pan to save just to be sure he is there two times a week.

If you guys want to talk inclusion it would be good to give support for things like this.

There is nothing without B

I still remember during our home invasion. Two men with guns, we were told to lie on the floor and hide our faces. They shouted it at Brian and I looked and saw that he was looking right at the man who was pointing the gun at him. They shouted at him to hide his face or they would kill him. I shouted and screamed the ‘R’ word. Don’t shoot him… please don’t shoot him. I still remember hearing them saying ‘oh is a idiot boy’ and they went on to take whatever they could. I learnt then what mummy felt when she thought that after 6 weeks in an incubator and she thought Brian was gone.

So I close by recalling what I remember the story about a woman who getting ready to give birth dreamed about landing up in the land of Italy, vibrant, much energy, and when here child was born and diagnosed with a disability she felt well at least she had landed in Holland, where there are still flowers and still energy but just at another pace. I settled that for a while. But no more. I am cashing in my frequent flyer points we are all three of us along with my sister and heading to Italy next summer.

Call to Action/The way Forward

Presented By-Mrs. Kim Simplis Barrow

The journey to inclusivity is a long one, and the path that has been followed in Belize has brought us closer to fundamentally changing the environment in which our children grow and develop. As we look behind us we can be proud of the steps we have taken and be grateful for all of those who have made it happen. But a journey of this nature should be measured not by how far we have come, but instead how far we still have to travel. When we run a race, whether sprint or long distance, our focus should always be on seeing the finish line ahead of us and expending all our energy in working out how we can cross it and reach our goal.

During these two days we have heard great practice and inspiring stories, but we must ensure that the story does not end here. Building an inclusive society where the current and future generations of children with disabilities are afforded the opportunities that they deserve requires a new chapter to open. We must also seek to serve past generations – those children with disabilities who have grown into adults and have not had the opportunities that we are now creating for younger generations today.

The chapter of our journey that we are about to enter is still to be written, but today we can choose to define the narrative it will follow. The challenge in front of us is to continue to build the services and support that are necessary, but to also work to change and adapt the mindset of the community in which the children with disabilities around us today will grow and learn. We need to work to ensure that all voices a child hears as they grow up talk of opportunity, of possibility and of acceptance. Once this unification of understanding is reached we can truly believe that we are on the road towards a fully inclusive society.

Creating inclusion for people with disabilities in Belize and across the region is dependent not simply on what we do, but how we do it and why we do it.

Why do we do this? We choose to because we know it to be right. Our mission is a just one which recognises the fundamental rights of all people to access the same and equal opportunities that we all take for granted.

How do we do this? We put the needs of the individuals with disabilities at the heart of our decision-making to ensure that what we do responds to their needs and aspirations. We do it with a spirit of cooperation and ambition which recognises that there needs to be a coordinated and coherent approach in order to create the best outcomes.

What do we do? We invest our time, resources and energy to ensure that those most vulnerable in our society are not left to travel alone, that we are travelling alongside them to support, guide and serve them.

The road map for our journey is complex and varied, and it is a map which may take in unexpected diversions, surprise obstacles and unknown areas that we have to carefully navigate. The journey we are taking is one which we hope we can take alongside others within the region. In drawing together the goodwill and aspiration of everyone here today we believe that we can continue our journey to our ultimate destination.

Today we make a call for action which will lead to a fully inclusive society built on a shared mindset founded in awareness, sensitisation and information. To build that mindset takes time – we are already moving along that path, but the ongoing generational shift that is required is a long process and we must commit to staying the course. The movement we are building needs nurturing and care over the long-term so it can bear fruit.

Our call for action begins with our eagerness to see legislative action which enshrines the rights of both children and adults with disabilities. From this we also call for each Government to:

all should sign and ratify the Convention on the Rights of PWD
all should begin the drafting of a Disability Bill, the Acts of the Bahamas, Jamaica, Trinidad & Tobago exist, let us use them as guides.
Where there is an Act, move to prepare regulations.
For all we should look at our current budget allocation and set a target to increase the allocation for state services.

2. We call for a review of the how the National Census in each country allows for capturing critical data on persons with disabilities. Let us establish minimum data which must be collected to ensure the design, implementation and tracking of national programmes and policies. While awaiting Census 2020/21 we will use existing networks and reporting mechanisms to gain deeper insights, and share this information so that those who are best positioned to respond to needs can be fully engaged in creating a person-centred approach guided by data.

3. In education and health we call for a continuation and growth of the investment that is taking place to build the capacity of our educators and medical professionals to become enablers of inclusivity. We recognise that the lifelong services and the providers of these services so that individuals with disabilities access need to be equipped to drive inclusivity.

4. Fundamentally we call for coordination and coherence across all services and activities. Throughout an individual’s life we need to ensure that the way in which the doctor, the teacher, the police officer or the government official approaches and works with them is coherent and unified, that they all speak to an inclusive and forward looking agenda that creates the greatest opportunity for community participation. That there will be equal access to justice, to health care, to counselling and social service support. That Governments build partnerships and support programmes offered by NGOs, CBOs, and international organisations which increase access to health screening and care, reduction in discrimination and supports inclusion.

5.Establish or strengthen National Council/Commission for People with Disabilities which can be the platform which brings together government, centres of excellence, NGOs, communities and persons with disabilities. They will chart, track and hold accountable the key stakeholders tasked to ensure inclusion. In doing this we seek to review the experiences and work of existing Commission such as the one that exists in the Bahamas and other territories.

6. Ensure the creation of real life chances for individuals with disabilities and their household ensuring that they can sustain and select a life and livelihood, whether through training, employment, enterprise or any other route they choose. We are calling for action to address the 15% who have severe to profound disabilities. Ensuring that there are programmes and opportunities which will support their needs and ensure inclusion.

7. We call on increasing at the Regional and national level mechanisms which will support self-advocacy by individuals with disabilities and advocacy on their behalf is embedded in action and behaviour. Through advocacy we can empower the families of children with disabilities to build the foundations of an inclusive life which will stay with them as they travel through life.

8.We call for provision of information to individuals with disabilities and their circle of support, this is the foundation for empowerment. We will create ways in which people with disabilities, their families and caregivers can gain access to valuable information and support networks, which will not only make them better informed to meet the challenges they are facing, but also give them the opportunity to engage with and learn from others who are going through the same challenges. Support for the child starts with the family, and a better informed and supported family will provide a better platform for their child.

9. Starting with a response to the Zika challenge that brings the Ministries together we will prove that a flexible and adaptable partnership across Ministries will create the best results. Building on the collaborative approach that is being taken across Ministries towards Early Childhood Development we will explore how to bring together leadership from across Ministries to create a flexible and responsive approach that focuses on inclusion in all areas, recognising that a collaborative approach will create the best outcomes.

10. Recognize the importance for supporting sports and cultural opportunities to increase the opportunities for inclusion of children with disabilities.

These actions that we call for are building blocks for an inclusive society, and there will be signposts along the journey to our destination. This destination is one in which a generation of children can grow up and not feel the stigmatisation of difference, in which they can build their life and fulfil whichever ambition they reach for, and where our children know that whatever challenge they are presented with they can depend on the rest of us to support them as they face it.