This blog is Part II of previously posted blog.
The following report is an example of the role that I was asked to play as an occupational therapist in making a difference in the delivery of health care to adolescents with disabilities. In advocating for this change, I had to engage providers at all levels, that is, from the community to the policy level and vice versa.
In 2003, the GOJ/EC/UNFPA agreed on an approach to poverty alleviation and a millennium goal which involved the introduction of contraceptives in family planning, the safe delivery of babies for both mother and baby and the control of STIs . The youths were targeted as a core group to be educated on issues related to their sexual and reproductive health and to advocate for the practice of safe sex. For the first time, this national programme also included adolescents with disabilities since persons within the disability sector continued to advocate strongly for inclusion. Afterall, AWDs also had the same challenges, and in some cases more so, to their sexual and reproductive health. Subsequent research conducted among adolescents with disabilities by the Jamaican Association on Mental Retardation revealed that –
Children with disabilities are at high risk for sexual molestation and abuse by care givers and family members (JAMR, 2005).
It was also discovered that the inclusive practices of some disability groups such as the deaf, made their members particularly susceptible to the spread of STIs. What did these adolescents know about their sexual and reproductive health and what were the obstacles to their accessing health care services?
Three agencies were given the responsibility to investigate these obstacles and to determine a way forward for AWDs which considers equality in accessing SRH services and the fulfillment of their expectations as citizens.
The report from the qualitative research conducted among AWDs by the Jamaican Association on Mental Retardation (JAMR), indicated their dissatisfaction with the approach of members of the medical team. This approach is best described as the medical model of disability which believes that the medical practitioner is ‘the expert’ who fully understands the patients’ medical needs and how to ‘cure or fix it’. The medical practitioner is prepared to make decisions that significantly affect disabled persons lives without giving due consideration to their opinions or the circumstances of their lives. AWDs described the general attitude of practitioners are condescending while deaf persons spoke of the lack of privacy in discussing intimate matters as most doctors insisted on having a third party present ‘a communicator’ using sign language between doctor and patient.
As OTs we must be passionate in our defense of a model of intervention /practice that is client –centred.
The client’s mental and physical state is given primary consideration and not the super ego of the practitioner.
In addition, we must also use the facts to argue for change!
THE FACTS AS DESCRIBED BY AWDS
Research conducted among AWDs identified the following insights
* Most AWDs reported negative experiences in many SRH service delivery sites and with service providers.
* AWDs have a strong desire to be treated with respect and dignity and to have their rights respected.
THE FACTS AS SEEN BY PROVIDERS OF SERVICES
Simultaneous research conducted among the providers of services revealed the following.
Rights Issues
Should AWD 18+ yrs make own decisions about contraceptive use?
* 81-89% agreed that the deaf, blind and physically disabled adolescents should make decisions about contraceptive use.
* 40% disagreed or were undecided that the mild MR should make decisions about contraceptive use.
* 70% disagreed or was undecided that moderate MR should make decisions about contraceptive use
* 70-80% agreed parents should be involved in contraceptive decisions for mild and moderate MR
Attitudes – cultural biases
Comments were noted on 57 questionnaires indicating respondents feelings that sexual relationship should not be outside of marriage
* disability and age less of an issue
Can AWD make a contribution to society
* More than 80% of respondents said AWD can contribute to society
* Mild and moderate MR had the highest rating for not being able to make contribution to society (10% & 13%)
However, as we reviewed the outcomes, one group of health care professionals seemed to have eluded the process. The findings of the research conducted among AWDs had identified
Advocacy is also about providing pertinent information to key persons and expecting such persons to act on that new knowledge in a manner that will effect positive change.
As an occupational therapist, I could immediately relate to the issues that were likely to be problematic for PWDs in a pharmacy. It is the right of PWDs to be able to enter (physical access) any pharmacy, fill their prescription and have their concerns addressed in a confidential manner by the pharmacist and/or their assistants. I had always wondered how persons in wheelchair or who were blind, navigated the floors of most pharmacies. We considered that PWDs could best be their own advocates if they were brought face to face with the pharmacists. As OTs we can empower our clients /patients to be their own advocates. A face to face encounter in a cordial atmosphere would facilitate frank open discussion. pharmacists as one discreet group with whom AWDs consistently had negative experiences. Pharmacists are not traditionally a health provider with whom occupational therapists have direct contact concerning clients’ health care which possibly explains this omission. However, we have to be prepared to cross the bridge over uncharted waters. We had made an assumption that pharmacists were unaware of their effect on this population of persons. This was another opportunity to impact positively on the delivery of health care to persons with disabilities.
A 2-day workshop was organized in a residential setting, involving pharmacists from the administration/policy level, the inspectorate (council), professional (hospital based) and retail (community based) pharmacies.
The focus of this workshop was 1. To sensitize pharmacists to the SRH care needs of the AWDs 2.To present the reality of being disabled. 3. To determine how the lack of access to this service can directly affect the quality of life for persons with disabilities?
The following strategies were employed -
* Pharmacists were brought together in a non threatening environment –the atmosphere was non-adversarial.
* The president of the Association of Pharmacists was involved in the planning of the workshop – determining key persons to be involved
* Pharmacists were exposed to experiential learning as they were encouraged to take on a particular disability and live this experience for most of day one.
* Persons with disabilities joined the group on day 2 after the pharmacists had been educated about issues related to different disability groups. They shared openly about their experiences.
* The current standards of the pharmacy council were reviewed with respect to the delivery of services for all persons
The outcome of this workshop was truly inspirational and an example of advocacy at its best –there was a willingness on the part of all parties to speak and to listen and to appropriate the issues in a context for professional grow and development. A historic moment was captured as a mature pharmacist, overwhelmed by the nature of the sharing, chose to apologize on behalf of her colleagues for the negative experiences of disabled persons – those present and the community of persons they represented.
ReferenceBartley 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"
The following report is an example of the role that I was asked to play as an occupational therapist in making a difference in the delivery of health care to adolescents with disabilities. In advocating for this change, I had to engage providers at all levels, that is, from the community to the policy level and vice versa.
In 2003, the GOJ/EC/UNFPA agreed on an approach to poverty alleviation and a millennium goal which involved the introduction of contraceptives in family planning, the safe delivery of babies for both mother and baby and the control of STIs . The youths were targeted as a core group to be educated on issues related to their sexual and reproductive health and to advocate for the practice of safe sex. For the first time, this national programme also included adolescents with disabilities since persons within the disability sector continued to advocate strongly for inclusion. Afterall, AWDs also had the same challenges, and in some cases more so, to their sexual and reproductive health. Subsequent research conducted among adolescents with disabilities by the Jamaican Association on Mental Retardation revealed that –
Children with disabilities are at high risk for sexual molestation and abuse by care givers and family members (JAMR, 2005).
It was also discovered that the inclusive practices of some disability groups such as the deaf, made their members particularly susceptible to the spread of STIs. What did these adolescents know about their sexual and reproductive health and what were the obstacles to their accessing health care services?
Three agencies were given the responsibility to investigate these obstacles and to determine a way forward for AWDs which considers equality in accessing SRH services and the fulfillment of their expectations as citizens.
My agency’s mandate was –‘to build the capacity of providers of SRH services to deliver equitable, gender sensitive, high quality services to AWDs’.
It was widely speculated that in mainstream health care in Jamaica, providers of services were not inclined to consider the needs of persons with disabilities as they plan and execute their delivery of health care services for the ‘whole’ community. There was genuine ignoranceThe only effective approach that we could use to fuel our arguments was from a human rights perspective. - for nurses and doctors this was a perspective that could be readily understood since their oath of practice prepares them to act without prejudice when responding to the needs of patients. The members of the health team to be targeted included:
* Community Health Aides
* Registered Nurses
* Public Health Nurses
* Registered Midwife
* Enrolled Assistant Nurse
* Family Nurse Practitioner
* General Practitioner
* Contact Investigator
* Dental Nurses/Assistant
* Health Educator
* Other – the receptionist, the porter, the security guard in the clinics and hospitals
If we were to advocate effectively for improved SRH services for AWDs we had to hear from the stakeholders, that is, the AWDs as well as the providers of the SRH services. As Advocates, we must know the facts and not make assumptions. about the diverse needs of persons with disabilities, including their sexual and reproductive health needs. The planning of health care services for AWDs would have to transcend institutional, personal and environmental barriers.
It was widely speculated that in mainstream health care in Jamaica, providers of services were not inclined to consider the needs of persons with disabilities as they plan and execute their delivery of health care services for the ‘whole’ community. There was genuine ignoranceThe only effective approach that we could use to fuel our arguments was from a human rights perspective. - for nurses and doctors this was a perspective that could be readily understood since their oath of practice prepares them to act without prejudice when responding to the needs of patients. The members of the health team to be targeted included:
* Community Health Aides
* Registered Nurses
* Public Health Nurses
* Registered Midwife
* Enrolled Assistant Nurse
* Family Nurse Practitioner
* General Practitioner
* Contact Investigator
* Dental Nurses/Assistant
* Health Educator
* Other – the receptionist, the porter, the security guard in the clinics and hospitals
If we were to advocate effectively for improved SRH services for AWDs we had to hear from the stakeholders, that is, the AWDs as well as the providers of the SRH services. As Advocates, we must know the facts and not make assumptions. about the diverse needs of persons with disabilities, including their sexual and reproductive health needs. The planning of health care services for AWDs would have to transcend institutional, personal and environmental barriers.
The report from the qualitative research conducted among AWDs by the Jamaican Association on Mental Retardation (JAMR), indicated their dissatisfaction with the approach of members of the medical team. This approach is best described as the medical model of disability which believes that the medical practitioner is ‘the expert’ who fully understands the patients’ medical needs and how to ‘cure or fix it’. The medical practitioner is prepared to make decisions that significantly affect disabled persons lives without giving due consideration to their opinions or the circumstances of their lives. AWDs described the general attitude of practitioners are condescending while deaf persons spoke of the lack of privacy in discussing intimate matters as most doctors insisted on having a third party present ‘a communicator’ using sign language between doctor and patient.
As OTs we must be passionate in our defense of a model of intervention /practice that is client –centred.
The client’s mental and physical state is given primary consideration and not the super ego of the practitioner.
In addition, we must also use the facts to argue for change!
THE FACTS AS DESCRIBED BY AWDS
Research conducted among AWDs identified the following insights
* Most AWDs reported negative experiences in many SRH service delivery sites and with service providers.
* AWDs have a strong desire to be treated with respect and dignity and to have their rights respected.
THE FACTS AS SEEN BY PROVIDERS OF SERVICES
Simultaneous research conducted among the providers of services revealed the following.
Rights Issues
Should AWD 18+ yrs make own decisions about contraceptive use?
* 81-89% agreed that the deaf, blind and physically disabled adolescents should make decisions about contraceptive use.
* 40% disagreed or were undecided that the mild MR should make decisions about contraceptive use.
* 70% disagreed or was undecided that moderate MR should make decisions about contraceptive use
* 70-80% agreed parents should be involved in contraceptive decisions for mild and moderate MR
Attitudes – cultural biases
Comments were noted on 57 questionnaires indicating respondents feelings that sexual relationship should not be outside of marriage
* disability and age less of an issue
Can AWD make a contribution to society
* More than 80% of respondents said AWD can contribute to society
* Mild and moderate MR had the highest rating for not being able to make contribution to society (10% & 13%)
At the completion of the project 0ver 500 health care providers including nurses, doctors, community health workers, public health nurses, hospital administrators and regional health managers were sensitized about the health care needs of persons with disabilities and there was much discussion around the shaping of services.
However, as we reviewed the outcomes, one group of health care professionals seemed to have eluded the process. The findings of the research conducted among AWDs had identified
Advocacy is also about providing pertinent information to key persons and expecting such persons to act on that new knowledge in a manner that will effect positive change.
As an occupational therapist, I could immediately relate to the issues that were likely to be problematic for PWDs in a pharmacy. It is the right of PWDs to be able to enter (physical access) any pharmacy, fill their prescription and have their concerns addressed in a confidential manner by the pharmacist and/or their assistants. I had always wondered how persons in wheelchair or who were blind, navigated the floors of most pharmacies. We considered that PWDs could best be their own advocates if they were brought face to face with the pharmacists. As OTs we can empower our clients /patients to be their own advocates. A face to face encounter in a cordial atmosphere would facilitate frank open discussion. pharmacists as one discreet group with whom AWDs consistently had negative experiences. Pharmacists are not traditionally a health provider with whom occupational therapists have direct contact concerning clients’ health care which possibly explains this omission. However, we have to be prepared to cross the bridge over uncharted waters. We had made an assumption that pharmacists were unaware of their effect on this population of persons. This was another opportunity to impact positively on the delivery of health care to persons with disabilities.
A 2-day workshop was organized in a residential setting, involving pharmacists from the administration/policy level, the inspectorate (council), professional (hospital based) and retail (community based) pharmacies.
The focus of this workshop was 1. To sensitize pharmacists to the SRH care needs of the AWDs 2.To present the reality of being disabled. 3. To determine how the lack of access to this service can directly affect the quality of life for persons with disabilities?
The following strategies were employed -
* Pharmacists were brought together in a non threatening environment –the atmosphere was non-adversarial.
* The president of the Association of Pharmacists was involved in the planning of the workshop – determining key persons to be involved
* Pharmacists were exposed to experiential learning as they were encouraged to take on a particular disability and live this experience for most of day one.
* Persons with disabilities joined the group on day 2 after the pharmacists had been educated about issues related to different disability groups. They shared openly about their experiences.
* The current standards of the pharmacy council were reviewed with respect to the delivery of services for all persons
The outcome of this workshop was truly inspirational and an example of advocacy at its best –there was a willingness on the part of all parties to speak and to listen and to appropriate the issues in a context for professional grow and development. A historic moment was captured as a mature pharmacist, overwhelmed by the nature of the sharing, chose to apologize on behalf of her colleagues for the negative experiences of disabled persons – those present and the community of persons they represented.
It is not possible to present fully the recommendations from this workshop. However, I would like to share that four pharmacists committed to having their pharmacies reorganized as model client-friendly pharmacies –
Recommendations
At least one passage /walk way to the pharmacy would be cleared of obstacles, widened where possible and lead directly to the pharmacy window.
Pharmacy windows would be lowered to a level that allows for effective communication between pharmacist or assistant and some one in a wheelchair.
Pharmacists are to inform persons who are blind when other persons are too close to overhear their conversation and should take the person to a confidential corner which allows for private conversation.
At least one disabled parking spot should be immediately in front of all pharmacies
A communication kit is to be devised by members of the group to facilitate the sharing of information with clients who are deaf, blind, physically and intellectually disabled.
As OTs we must see the benefits of advocating for change at the policy level
A 1-day seminar was also organized with the Managers of Regional and Central Government in the Ministry of Health (MOH) with a focus on the reality of delivery of service from an organizational perspective….what policies would sufficiently address the weaknesses in the system when considering the needs of persons with disabilities?
The Ministry of Health’s response to issues raise was that they were actively engaged in creating a client-friendly environment which considers the needs of all clients, including those with disabilities. It was not clear if persons with disabilities were invited to be a part of this review team. The discussions at this seminar, clearly exposed the lack of resources and the capital which would be required to provide comprehensive services. Strong consideration was given a referral system which originates at the community level (in type 4 - 5 clinics) leaving the resources at the tertiary (hospital) level mainly for specialist care.
In summary, I must emphasize the fact that OTs are uniquely educated to understand the many issues which surround their clients’ lives. We assist clients in identifying these issues and in problem solving. However, we should go further to advocate for the services and support they need to live quality lives. We know how it works in the developed countries – how therapists are strategically placed in hospitals, clinics, social services and educational institutions. The resources that are made available to persons with different disabilities so that they can be functional and enjoy quality of life. It may not work in exactly the same here in Jamaica but we can build an awareness of disability issues among providers of services and the general public, influence legislation where possible and build the capacity of persons with disabilities to advocate on their own behalf. Perhaps, this is an approach that we should seriously consider in Jamaica, so that in the next 50 years we will present ourselves as professionals who are passionate about the right of all citizens to health care and education – we need to focus on the bigger picture.
At least one passage /walk way to the pharmacy would be cleared of obstacles, widened where possible and lead directly to the pharmacy window.
Pharmacy windows would be lowered to a level that allows for effective communication between pharmacist or assistant and some one in a wheelchair.
Pharmacists are to inform persons who are blind when other persons are too close to overhear their conversation and should take the person to a confidential corner which allows for private conversation.
At least one disabled parking spot should be immediately in front of all pharmacies
A communication kit is to be devised by members of the group to facilitate the sharing of information with clients who are deaf, blind, physically and intellectually disabled.
As OTs we must see the benefits of advocating for change at the policy level
A 1-day seminar was also organized with the Managers of Regional and Central Government in the Ministry of Health (MOH) with a focus on the reality of delivery of service from an organizational perspective….what policies would sufficiently address the weaknesses in the system when considering the needs of persons with disabilities?
The Ministry of Health’s response to issues raise was that they were actively engaged in creating a client-friendly environment which considers the needs of all clients, including those with disabilities. It was not clear if persons with disabilities were invited to be a part of this review team. The discussions at this seminar, clearly exposed the lack of resources and the capital which would be required to provide comprehensive services. Strong consideration was given a referral system which originates at the community level (in type 4 - 5 clinics) leaving the resources at the tertiary (hospital) level mainly for specialist care.
In summary, I must emphasize the fact that OTs are uniquely educated to understand the many issues which surround their clients’ lives. We assist clients in identifying these issues and in problem solving. However, we should go further to advocate for the services and support they need to live quality lives. We know how it works in the developed countries – how therapists are strategically placed in hospitals, clinics, social services and educational institutions. The resources that are made available to persons with different disabilities so that they can be functional and enjoy quality of life. It may not work in exactly the same here in Jamaica but we can build an awareness of disability issues among providers of services and the general public, influence legislation where possible and build the capacity of persons with disabilities to advocate on their own behalf. Perhaps, this is an approach that we should seriously consider in Jamaica, so that in the next 50 years we will present ourselves as professionals who are passionate about the right of all citizens to health care and education – we need to focus on the bigger picture.
ReferenceBartley 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/.
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