This blog is a paper wirtten by the Programme Director of McCam Centre Mrs. Pauline Watson Campbell, OT MSc, for the 9th Biennual Conference on Occupational Therapy presented by the Assocation Of Caribbean Occupational Therapist (ACOT).
"The Role of Occupational Therapists as advocates for persons with disabilities (PWDs) – a report on promoting SRH for AWDs in Jamaica"
This paper is not based on a theoretical model or framework. It is a composite of my experience as an advocate for persons with disabilities in Jamaica. It is clear to me that as an occupational therapist in a situation where there are limited resources and ignorance surrounding the needs of persons with disabilities, one cannot avoid adopting an attitude of advocating for improvement in the situation surrounding people’s lives.
Advocacy is the pursuit of influencing outcomes — including public-policy and resource allocation decisions within political, economic, and social systems and institutions — that directly affect people’s current lives. (Cohen, 2001)
Therefore, advocacy can be seen as a deliberate process of speaking out on issues of concern in order to exert some influence on behalf of ideas or persons. Advocacy has many interpretations depending on the issue at stake ……
The World Health Organization has advanced a definition of disability which confirms that the approach of occupational therapy, which has always maintained a focus on removing barriers to functional living for persons with disabilities, is indeed the correct approach. Occupational Therapists are educated to appreciate the matrix of the physical, mental, psychosocial and spiritual factors that co-exists in any client’s experience of disability. It is never only about the client’s ability to be independent but also about removing social and environmental barriers that depreciate the quality of a person’s life, so enhancing the individual’s ability to take full control of his/her life, giving him/her the required support to pursue a chosen lifestyle.
Therefore the occupational therapist consistently advocates for the best possible situation for the client by making recommendations for change that will facilitate optimal, independent living and the continuance of roles and habits that are the essence of persons’ lives such as being a homemaker, socializing with friends or attending worship service. Let me mention here that as members of the OTAJ we have been making inroads in our individual churches as we advocate for an environment for worship that will accommodate ‘all who will’ to come and be ….. At a practical level this means that persons with disabilities should find that they can enter the sanctuary, access toilets, share in the service through sign language, braille or large print. The whole congregation must be sensitized to the diverse needs of persons with disabilities who may become members of their church. It is our intention to take our ideas to the Jamaica Council of Churches so as to expand our reach to a greater number of member churches.
The occupational therapist understands that creating a partnership with the client is important as together they explore the possibilities and the challenges of being disabled- the implications within the home, social settings, the place of work for the adult or school for the child. It is typical for the occupational therapist to ask ….how can this person live as complete a life as possible (complete being determined by the client)?…what are the obstacles that must be eliminated to allow this to happen? What does the client see as a goal to be achieved in the immediate and in the long term? How can I help this person to achieve that goal? The occupational therapist realizes that the motivation to be successful in any domain of human existence requires effort and drive and a willingness to overcome real and imagined obstacles. The challenges are likely to be multiplied for the disabled person.
Therefore, the client must be motivated to want to overcome the challenges. I suggest that this is where the occupational therapist often has to begin to advocate - To advocate at this personal level, the client must believe that that opportunities will eventually outstrip the barriers. This is particularly true as the individual goes through the stages of acceptance of his/her disability or parents, that of their child. I have sometimes had to argue on behalf of the child whose mother wants to give up because she perceives that she is alone in her struggles and she does not see a future for this child living with her. What of this child’s right to realize her potential in a loving, caring home? The situation of single mothers in Jamaica is of particular significance as we contemplate this reality. A large percentage of our families in Jamaica are headed by single parents, in particular, single mothers. The structure of families has changed and the extended family is no longer a certainly to give support and well needed respite at timely intervals. Single mothers who have migrated to the city face even greater challenges. The occupational therapist in directing this mother to the services that she needs for her disabled child, must seek to empower her to be positive in her thinking, to be determined in struggles and to achieve a balance in her life which ultimately affects the quality of her life and therefore that of her child.
My advice to all parents of children with disabilities is always to 1.‘fight for the right’ of your children to a life that is not less than but equal to that of their peers., 2.to bond with other parents so that they can support each other and 3.to be united in their appeal for services. Many parents do not know of the existence of services or are reluctant to go public with their situations. I have had many persuasive discussions with mothers who for instance refuse to go to the family court to see redress from fathers who have neglected their children ….although they struggle to make the cost of services and in some cases must deny their children therapeutic intervention, they are reluctant to exercise their right to support in court.
As a paediatric occupational therapist, I make the necessary links between the Government agencies in health, education and social services, voluntary organizations, service clubs and other agencies. The advantages of practicing in a fairly small country like Jamaica are that 1. We can work closely with persons who can influence change 2. We can network effectively since the circle is smaller and it is not difficult to get to the top of the ladder if we persist long enough.
For example, we have made a positive move towards a holistic approach to meeting the needs of our children in Jamaica through the establishment of a Early Childhood Commission to include the Ministry of Justice and Local Government in providing a more comprehensive offering of services. It will be sometime before we will have a cadre of OTs in health, education and social services, however, we can now advocate on behalf of a child for services at all levels, from the tertiary /institutional level to the community.
Here, I pause to acknowledge the work of the members of the OTAJ who have for the past 30 years, have been relentless in the struggle for an education programme in occupational therapy in Jamaica. We have written many proposals, spent days in dialogue with Government and institutions. We have been angry, but we have never given up the cause. Today, the reality of the years of advocating for this development seems to have born fruit. We hope to see a programme in occupational therapy within the next 2 years under the faculty of medical sciences at the UWI.
Jamaica is signatory to several international agreements or non-binding resolutions that reference the Human rights of persons with disabilities. These include:
* The Convention on the Rights of the Child (1991).
* The International Covenant on Civil and Political Rights (1976),
* The Universal Declaration on Human Rights and
* The Economic Social and Cultural Rights (1976).
* International Convention on the Rights of Persons with Disabilities (2006)
Our National Policy on Disability provides guidelines based on the requirements of the U.N. Standard Rules - reduces the risk of social exclusion although there are no legal sanctions.
A National Disability Act is being drafted by the Central Parliamentary Counsel (CPC). The Act will Provide for the protection of the rights of persons with disabilities and for matters incidental to or connected with disability.
The occupational therapist must know the details of the Act and be prepared to pass on this information to disabled persons and their families as they advocate for their right to services. They must learn how to exercise their rights as citizens. Advocacy is a new concept for many persons in this country.
To be cont'd
Reference
Bartley M. (2007), Paper entitled Disability Rights presented at workshop for providers of health services, social workers and guidance counselors.
Cohen, D., R. de la Vega , G. Watson. 2001. Advocacy for social justice. Bloomfield, CT: Kumarian Press Inc.
Jones et. al. 1998. Sociology and Occupational Therapy, An Integrated Approach, Churchill Livingston.
WHO International Classification of Functioning retrieved from http://www.who.int/classifications/icf/en/.
"The Role of Occupational Therapists as advocates for persons with disabilities (PWDs) – a report on promoting SRH for AWDs in Jamaica"
This paper is not based on a theoretical model or framework. It is a composite of my experience as an advocate for persons with disabilities in Jamaica. It is clear to me that as an occupational therapist in a situation where there are limited resources and ignorance surrounding the needs of persons with disabilities, one cannot avoid adopting an attitude of advocating for improvement in the situation surrounding people’s lives.
Advocacy is the pursuit of influencing outcomes — including public-policy and resource allocation decisions within political, economic, and social systems and institutions — that directly affect people’s current lives. (Cohen, 2001)
Therefore, advocacy can be seen as a deliberate process of speaking out on issues of concern in order to exert some influence on behalf of ideas or persons. Advocacy has many interpretations depending on the issue at stake ……
The World Health Organization has advanced a definition of disability which confirms that the approach of occupational therapy, which has always maintained a focus on removing barriers to functional living for persons with disabilities, is indeed the correct approach. Occupational Therapists are educated to appreciate the matrix of the physical, mental, psychosocial and spiritual factors that co-exists in any client’s experience of disability. It is never only about the client’s ability to be independent but also about removing social and environmental barriers that depreciate the quality of a person’s life, so enhancing the individual’s ability to take full control of his/her life, giving him/her the required support to pursue a chosen lifestyle.
Therefore the occupational therapist consistently advocates for the best possible situation for the client by making recommendations for change that will facilitate optimal, independent living and the continuance of roles and habits that are the essence of persons’ lives such as being a homemaker, socializing with friends or attending worship service. Let me mention here that as members of the OTAJ we have been making inroads in our individual churches as we advocate for an environment for worship that will accommodate ‘all who will’ to come and be ….. At a practical level this means that persons with disabilities should find that they can enter the sanctuary, access toilets, share in the service through sign language, braille or large print. The whole congregation must be sensitized to the diverse needs of persons with disabilities who may become members of their church. It is our intention to take our ideas to the Jamaica Council of Churches so as to expand our reach to a greater number of member churches.
The occupational therapist understands that creating a partnership with the client is important as together they explore the possibilities and the challenges of being disabled- the implications within the home, social settings, the place of work for the adult or school for the child. It is typical for the occupational therapist to ask ….how can this person live as complete a life as possible (complete being determined by the client)?…what are the obstacles that must be eliminated to allow this to happen? What does the client see as a goal to be achieved in the immediate and in the long term? How can I help this person to achieve that goal? The occupational therapist realizes that the motivation to be successful in any domain of human existence requires effort and drive and a willingness to overcome real and imagined obstacles. The challenges are likely to be multiplied for the disabled person.
Therefore, the client must be motivated to want to overcome the challenges. I suggest that this is where the occupational therapist often has to begin to advocate - To advocate at this personal level, the client must believe that that opportunities will eventually outstrip the barriers. This is particularly true as the individual goes through the stages of acceptance of his/her disability or parents, that of their child. I have sometimes had to argue on behalf of the child whose mother wants to give up because she perceives that she is alone in her struggles and she does not see a future for this child living with her. What of this child’s right to realize her potential in a loving, caring home? The situation of single mothers in Jamaica is of particular significance as we contemplate this reality. A large percentage of our families in Jamaica are headed by single parents, in particular, single mothers. The structure of families has changed and the extended family is no longer a certainly to give support and well needed respite at timely intervals. Single mothers who have migrated to the city face even greater challenges. The occupational therapist in directing this mother to the services that she needs for her disabled child, must seek to empower her to be positive in her thinking, to be determined in struggles and to achieve a balance in her life which ultimately affects the quality of her life and therefore that of her child.
My advice to all parents of children with disabilities is always to 1.‘fight for the right’ of your children to a life that is not less than but equal to that of their peers., 2.to bond with other parents so that they can support each other and 3.to be united in their appeal for services. Many parents do not know of the existence of services or are reluctant to go public with their situations. I have had many persuasive discussions with mothers who for instance refuse to go to the family court to see redress from fathers who have neglected their children ….although they struggle to make the cost of services and in some cases must deny their children therapeutic intervention, they are reluctant to exercise their right to support in court.
As a paediatric occupational therapist, I make the necessary links between the Government agencies in health, education and social services, voluntary organizations, service clubs and other agencies. The advantages of practicing in a fairly small country like Jamaica are that 1. We can work closely with persons who can influence change 2. We can network effectively since the circle is smaller and it is not difficult to get to the top of the ladder if we persist long enough.
For example, we have made a positive move towards a holistic approach to meeting the needs of our children in Jamaica through the establishment of a Early Childhood Commission to include the Ministry of Justice and Local Government in providing a more comprehensive offering of services. It will be sometime before we will have a cadre of OTs in health, education and social services, however, we can now advocate on behalf of a child for services at all levels, from the tertiary /institutional level to the community.
Here, I pause to acknowledge the work of the members of the OTAJ who have for the past 30 years, have been relentless in the struggle for an education programme in occupational therapy in Jamaica. We have written many proposals, spent days in dialogue with Government and institutions. We have been angry, but we have never given up the cause. Today, the reality of the years of advocating for this development seems to have born fruit. We hope to see a programme in occupational therapy within the next 2 years under the faculty of medical sciences at the UWI.
Jamaica is signatory to several international agreements or non-binding resolutions that reference the Human rights of persons with disabilities. These include:
* The Convention on the Rights of the Child (1991).
* The International Covenant on Civil and Political Rights (1976),
* The Universal Declaration on Human Rights and
* The Economic Social and Cultural Rights (1976).
* International Convention on the Rights of Persons with Disabilities (2006)
Our National Policy on Disability provides guidelines based on the requirements of the U.N. Standard Rules - reduces the risk of social exclusion although there are no legal sanctions.
A National Disability Act is being drafted by the Central Parliamentary Counsel (CPC). The Act will Provide for the protection of the rights of persons with disabilities and for matters incidental to or connected with disability.
The occupational therapist must know the details of the Act and be prepared to pass on this information to disabled persons and their families as they advocate for their right to services. They must learn how to exercise their rights as citizens. Advocacy is a new concept for many persons in this country.
To be cont'd
Reference
Bartley M. (2007), Paper entitled Disability Rights presented at workshop for providers of health services, social workers and guidance counselors.
Cohen, D., R. de la Vega , G. Watson. 2001. Advocacy for social justice. Bloomfield, CT: Kumarian Press Inc.
Jones et. al. 1998. Sociology and Occupational Therapy, An Integrated Approach, Churchill Livingston.
WHO International Classification of Functioning retrieved from http://www.who.int/classifications/icf/en/.
This part is great.That is creative twist on word. I read the whole thing.
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