By: Jeff Hartman MPT

Summer 2006 Field Work

University of Wisconsin School of Medicine and Public Health

Supported by: Hillside Health Care International and the University of Wisconsin Latin American, Caribbean and Iberian Studies Program.

Table of Contents

                                                                                                                                                Page

1. Intro ……………………………………………………………………………….     4
2. Background …………………………………………………………………….…     5
3. Methodology……………………………………………………………………….    11
4. Results Part I: Survey assessment
1. Demographics ………………………………………………………………   12
2. Types and causes of disability ……………………………………………...   14
3. Functional and cognitive limitations ……………………………………….   15
4. Medical intervention and access ……………………………………………   16
5. Self reported needs…………………………………………………………     17
6. Summary of survey findings ………………………………………………     17

5. Results Part II: Rehabilitation organizational
1. Hillside Healthcare International…………………………………………..     18
2. C.A.R.E.- Belize…………………………………………………………...     18
3. B.C.V.I……………………………………………………………………..     19
4. Special Education Unit- Ministry of Education……………………………     19
5. Project H.O.P.E…………………………………………………………….     19
6. Helpage……………………………………………………………………..    19
7. S.N.A.T……………………………………………………………………..    19
8. Punta Gorda Hospital ………………………………….................................    20
9. T.O.L.C.A…………………………………………………………………..     20
10. Ministry of Human Development…………………………………………..     20
11. Ministry of Health…………………………………………………………..     20
12. Bob Farley…………………………………………………………………..     20

Page

6. Discussion ………………………………………………………………………….    21
7. Recommendations
1. More rehabilitation specialists ………………………………………...........    27
2. Organizational collaboration………………………………………………...   28
3. Early screening and intervention……………………………………………..  29
4. Community education and training…………………………………………..  32
5. Health Statistics………………………………………………………………  33
8. Conclusion…………………………………………………………………………...  38
9. References …………………………………………………………………………..  40
10. Acknowledgments ………………………………………………………………….   41
11. Appendices …………………………………………………………………………   42

“LET ME WIN, BUT IF I CAN NOT WIN, LET ME BE BRAVE IN THE ATTEMPT”

                                                            - 2006 Belize National Special Olympics Motto

Introduction

The 2006 Belizean national Special Olympics motto demonstrates the attitude and struggle of people living with disabilities. These people have the same desires to win, earn a living, get ahead, and contribute to society as all people in Belize . Because of the lack of opportunities and resources available to them, these desires are not always met, and often times they must be extremely brave when attempting to survive within their communities. These people are very courageous and inspirational and they deserve every right and opportunity as the common man. No paper can describe the life of someone living with a disability yet this assessment attempts to listen to the people and answer the question “What are the needs of people living with disabilities in the Toledo district of Belize, and what can be done to address these needs so that they may have equal opportunities and full integration into their communities?”.

The following report is written based on observation of and interaction with patients, caregivers, medical providers, local leaders, teachers and lay people and attempts to be a “voice” for the people living with disabilities. The goals for this assessment are to increase the communities awareness to the different types of disabilities and how these disabilities affect people’s lives; increase awareness of the barriers to receiving the proper medical care needed for self-actualization; and propose recommended actions to ensure that disabled people with special needs are integrated into a network for rehabilitation services provided by the Hillside clinic and other participating organizations.

Background

Like a lot of the world, Belize has many people who are living at or below the poverty level, drinking contaminated water, living in poor sanitary conditions, and have limited access to basic health care. Like many countries, Belize lacks the financial means and necessary infrastructure to establish a good health care system to address the medical needs of the country. The climate is very tropical which can lead to a variety of health conditions, such as malaria, and the topography can make travel difficult which inhibits people from extensive travel and developing the rural communities. Other factors such as geographic location, endemic disease, ecological destruction, challenging conditions for food production, bureaucracy and lack of awareness to problems such as disabilities have been difficult to overcome when trying to address poverty and health in Belize .

Belize is very unique in that the population is comprised of a mix of ethnicity and cultures. The Mestizos constitute 48.7%, creoles 24.9%, Mayan Indians 10.6%, Garifunas 6.1%, Mennonite 3.6%, and East Indians 3.0%. The remainder of the population (3.1%) is made up of Chinese, Arabs, Africans and Caucasians (1). The country is divided up into 6 districts. The southern most district named the Toledo District consists of approximately 27,000 people and is the most rural district in Belize with 81% of residents living outside of Punta Gorda (PG), the largest town in the district(2).  Many residents of the Toledo district live in small, remote villages accessed via unpaved roads or by foot and some villages do not yet have electricity or safe potable water. (3) The 2003 poverty assessment report listed the Toledo district as the poorest and least developed, with a poverty rate of 79% and a higher than average unemployment rate (3). 

Access to medical care is a big issue for people living in the Toledo district. Less then 10 percent of the population lives within 3 miles of a medical facility and most people do not have cars and rely on walking, biking or bus to travel outside of their village (4). Many people are hindered by a disability which makes mobility even more difficult if not impossible. One option for transportation is the bus, but for many in the villages, access is limited to four days a week. In addition, riding the bus is expensive and can be very difficult to ride if one has a disability. Another option would be to hire a taxi but this is even more expensive and less practical than riding a bus. There is an ambulance service out of the Punta Gorda (PG) hospital but its purpose is for emergency services only and even this service is not reliable. Because of these issues, it is often very challenging for a person to consult a medical professional and receive proper medical care and follow-up when necessary.

The only district hospital is found in PG and for many in the villages, even if they have access to transportation, the roads are very rough and unpredictable, especially during the rainy season when up to 180 inches of rain can fall. In addition, the medical services at the PG Hospital are very limited. All the basic inpatient services are available but physicians at the hospital are generalists therefore no regular surgical services exist. A General Surgeon and OB-Gyn Physician from the Southern Regional Hospital in Dangriga hold clinic two Fridays a month at the PG hospital. If a person requires higher level of services, they are referred to the Southern Regional Hospital or the Karl Huesner Hospital in Belize City which is Belize ’s chief referral center for specialist and high level care. Some emergency procedures may even be sent out of the country if services aren’t available in Belize . Currently no rehabilitation services are offered out of the PG or Dangriga hospitals. (See appendix A for operational definitions).

Belize has a population estimated to be 273,700 (5). According to the World Bank and the World Health Organization’s (WHO) estimations, 27,000 people are living with some sort of disability and would benefit from special services or equipment to improve their standard of living (6). The 2000 Belizean census found approximately 10.9 percent of the population were living with some sort of disability but this number is debatable and believed it to be much higher (7). To determine this percentage, the government included in the 2000 census a section that included yes/no questions on seeing, hearing, mobility, learning, behavior, mental functioning, and self care. An additional question was asked in order to determine whether these problems impacted their abilities more than other people their age (8).  There is some argument about the accuracy of this figure and even the literature consistently reports that yes/no categories in census surveys do not describe the disability experience, which must be measured differently to obtain information on the intensity, duration and environmental factors affecting persons with disabilities (9). There are other common problems associated with census studies that lead to an inaccurate reflection of the prevalence of disabilities. For example to reach 80-90% of the public, time is an issue, so questions are often very general and limited in number. In the Toledo district, statistics are arguably more inaccurate due to the remoteness of villages and difficulty getting to the people. Underestimation of disabilities is a trend seen in developing countries (9).

Despite these difficulties, the inclusion of disability in the census is an indication that the Belizean government has recognized the importance of disability awareness and statistics but more research and resources need to be allocated to collecting this information more effectively. The 2010 census reportedly has an improved disability section but the central statistics office (CSO) in Belmopan has not made the survey available.

There are multiple dimensions of disability that affect the individual. Among these dimensions are social and cultural exclusion (10), denial of opportunities to work and receive an education (11), and reduced ability to participate in household and community decisions (12). For example, many people feel the elderly are neglected in the villages because they are often unable to contribute to the family physically. Others feel they are neglected in larger communities because many of the family members have moved away for better opportunities and have left the person to fend for themselves. Either of these scenarios can leave the elderly isolated from society and left to fend for themselves which can be very difficult when their health and physical strength is limited.

Costs can also be incurred by households of the persons with disabilities. These costs can be financial costs directly related to the disability; cost to the caregiver in terms of time and effort required to provide assistance; and the social and emotional costs that come with social isolation and vulnerability to depression, fatigue and hopelessness. The impact of disability is not only experienced by the individual and family, but also by the community. A community with members who are unproductive and uneducated does not develop as well economically or socially. It has fewer people contributing to farming, business and industrial activities, fewer people planning for the community’s future, and fewer contributing financially. Unemployment and lack of education may also contribute to increased crime in communities, which can ruin the sense of community and divert the use of limited and valuable resources.

The Belize government is doing very little in addressing these issues. Belize has few laws protecting the rights of people with disabilities and there is no entity in place charged with protecting these people. As a result, no strategy is set up in case of an emergency for people with disabilities, no subsidies are available for parents of children with disabilities, schools must enroll students with disabilities but are not required to provide assistance, 75% of the public buildings are not handicap accessible, no system of transportation is wheelchair accessible and there is no national policy for the employment of people with disabilities, private or governmental (13). In fact, as of 2004, one of the largest employers in Belize , Belize Sugar Industries, did not employ any person with a disability (13). 

 In 2000-2001, the Belize government dismantled what was known as the Disability Services Division of the Ministry of Human Development which was responsible for developing and monitoring programs and services for people living with disabilities (2). Previously the Disability Service division of the Ministry of Human Development provided training in rehabilitation and physical therapy for parents of children with severe, profound or multiple disabilities. But now, there is very little training or support for the parents and the Ministry of Health in Belize does not allocate funding for the promotion of health or rehabilitation of persons with disability (2). The government and some non-government organizations (NGOs) assist in the delivery of rehabilitation services by providing some technical and financial support to various agencies.

 The Ministry of Human Development on paper has established a “Framework for Action for Persons with Disabilities” as recently as July of 2005. Although upon conversation with Mr. Alvan Cadle, officer in charge in the Toledo district, he admits resources are extremely limited in the Toledo division and they are only able to assist approximately 180 people with financial assistance on an average of 5 Belize dollars per week. If any equipment or other services are needed, they will refer the person and family to local non-government organizations such as CARE- Belize.

There has been an effort by the government to improve the provision of health care in the country, primarily through the Health Care Reform Act (5). In the last 3-5 years this project has resulted in the opening of health care centers, private clinics and a private hospital in Belize City . A pilot National Health Insurance (NHI) system was also just rolled out in the Toledo district on June 5, 2006 . This was a highly anticipated day and many local and national dignitaries such as Prime Minister Said Musa, Punta Gorda Mayor Carlos Galvez, and Regional Medical Director Dr. Jose Marenco were in attendance. A common theme stated by many of the speakers was that “healthy people equals a healthy and wealthy nation” and “health is a basic right”. They claim that the national health insurance program will be the financing part of a national health system which will ultimately improve access and quality of care to all people in the Toledo district. The first phase will focus on primary care and will not include rehabilitation services.

Many people are very pessimistic with the national health reform idea and NHI. They see it as a political ploy for the upcoming elections in 2006 and 2008 and they don’t believe the Toledo district will see increased medical resources in the future. They don’t understand why the government would roll-out the NHI system and promise resources later. On the other hand, many people see the benefits of the new NHI program in southern Belize City where the initial roll-out phase of the NHI occurred. They also feel health care reform is greatly needed and this is a step in the right direction.

Because the government is not very active in the treatment of people with disabilities, NGOs have taken it upon themselves to serve these people in many different ways. Unfortunately many of these organizations struggle to find funding or technical resources to implement and sustain many programs.

In summary, Belize is a country that has many challenges when attempting to meet the health needs of the people, especially the disabled. People with disabilities don’t have equal opportunities for employment, transportation, civic duties, and education which have an impact not only on the person but their family and community. No national coordinating agency is taking responsibility for establishing disability policy and there is no national disability action plan for the country. Several NGOs are attempting to influence governmental actions in addition to attempting to meet the needs of people living with disabilities. Despite the limited resources and other challenges, more can be done to meet the needs of the disabled if someone would listen and discover their needs and attempt to coordinate the available resources.

The first objective of this project was to survey at least 25 people living with disabilities to learn what types of disabilities they have and the struggles they face. The second objective was to observe or participate with all the organizations in the Toledo district working with the disabled so that recommendations could be given as to how to distribute resources more effectively. Finally, the third objective was to talk with people who would be instrumental in future program development and research.

Methodology

The study was divided into two main components: The first component consisted of field visits to the homes of families in which discussions were held to determine the difficulties they experience and an interview survey was used to act as a guide to facilitate discussions aimed at collecting data on the demographics of people living with disabilities, types and causes of disabilities, functional limitations as a result of disability and medical intervention and access. The patients were selected primarily as a convenience sample from the current patients seen by health care workers with Hillside Health Care International and CARE-Belize in Punta Gorda and the surrounding villages. The villages visited were: Aquacate, Baranco, Crique Jute, Eldridge, Hopeville, Jalacte, Midtown, Monkey River , Otaxha, San Marco, and San Jose .

The second component to the study was a rehabilitation organizational assessment in which numerous governmental and NGOs were investigated to determine the extent of their involvement in supporting people with disabilities and their caregivers. The organizations assessed were Hillside Healthcare International, The Community Agency for Rehabilitation and Education for Persons with Disabilities (CARE-Belize), The Belize Council for the Visually Impaired (BCVI), Project HOPE, Helpage, The Special Needs Association of Toledo (SNAT), missionary Bob Farley, PG Hospital, Ministry of Education Special Education Unit (SEU), The Toledo Organization for Children and Adolescents (TOLCA), Ministry of Human Development, and the Ministry of Health (MOH).

This pilot study was performed to aid in the assessment of the needs of people living with disabilities in the Toledo district. It was also performed to determine the effectiveness of the survey and to determine if a larger scale study would be feasible in the future.

Results Part I: Survey assessment

            The purpose of the survey was to gain first-hand insight into the lives of people living with disabilities to learn about the challenges they face and the needs they have in order to improve their lives. The results of the survey are as follows:

Demographics

A total of 25 people were interviewed and 60 % were male and 40% were female. 68% were from the eight villages while 32% were from Punta Gorda town. Belize is very unique in that many different ethnic groups reside there as was evident in the diversity of the people involved in the survey (Graph 1.).

Of the 25 participants, only 32% were able to communicate independently, the others required assistance from a family member who claimed to be the primary caregiver. Finally, 56% of the disabled ranged in ages between 0-18 years (Graph 2).

Types and Causes of disability                                                                                   

Diverse samples of ailments were noted in the study (Table 1). Up to 17 different conditions were reported and most of them were not formally diagnosed but were selected based upon observation or patient/caregiver report. Twenty four percent of the people presented with orthopedic type problems while the rest presented with visual, neurological or medical type conditions of which cerebral palsy, stroke, and developmental delay were the most prevalent. 52% of the respondents related their condition to problems occurring at birth while 32% related their disability to illness and 12% to injury. Only one respondent did not know the cause of their disability. Finally, the onset of the conditions ranged from being chronic or acute in nature to problems occurring at birth (graph 3).

Functional and cognitive limitations

            The survey asked questions specific to the effect of disability on the patient but affects on the family and community were considered during discussions. Many of the conditions noted during the study resulted in functional and cognitive limitations which impacted the lives of the individuals, families and communities. Of the people interviewed, the most prevalent limitations were issues of self-care, mobility, communication and cognition (table 2).

Table 2. Number of people with functional limitations

 Medical intervention and access

            Despite the challenges of transportation and limited medical services, all 25 participants sought out care for their condition. 88% of the people had gone into the PG or Belize City for hospital care while 4% saw a local healer or went to a community health center. Several different types of medical professionals were consulted as is evident in graph 4.

It is important to note that the people who saw a rehabilitation specialist did not have to seek them out or travel to see them. The specialist came to them from a variety of referral sources.

            Rarely did people seek medical care for conditions they deemed minor. They either had to be very sick, in a lot of pain, or unable to perform an important part of their life for them to struggle through the challenges of travel and spending money to see a provider (table 3).

Self-reported needs

            The final two questions of the survey were open-ended questions regarding the needs of people with disabilities and the difficulties of accessing care for their problems. The overwhelming majority of the people voiced frustration with the previously mentioned issues of transportation, lack of confidence in the medical providers and lack of caregiver and social support. Other needs were assistive equipment to help them perform daily activities, special education services, social outlets for the elderly, and even a visa to get to the United States for better treatment options.

Summary of survey findings

            In summary, the findings of the survey assessment show basic activities such as self care, mobility and cognitive functions are most limited as a result of disabilities. Early disability screening and public education could help reduce the effect of disabilities seen in the young and old populations. Poor access due to limited services, transportation difficulties and multiple challenges at home all hinder the ability of people to receive care for their disabilities. Additional perceived needs of the people are assistive equipment, special education, and social outlets.  

Results Part II: Rehabilitation organizational assessment

As mentioned in the introduction, many people living with disabilities or caring for someone with a disability are very brave and they persist through many challenges. The results of the survey assessment show people living with disabilities face many obstacles when attempting to attain medical treatment. The problem in the Toledo district is not only the difficulty of gaining access to available services, but actually finding the necessary services. 

The purpose of the organizational assessment was to learn about the organizations providing services to the disabled in order to determine if services are effectively meeting their needs. Here is a list and description of the organizations in the Toledo district:

1.      Hillside Healthcare International- For the past 2.5 years, Hillside in collaboration with the Catholic Medical Mission Board sponsored an occupational therapist named Melissa Clifford. Ms. Clifford was very involved in the community collaborating with organizations such as CARE, TOLCA, HOPE, and the special education unit with diverse activities involving the disabled. Her primary focus was patient care in which she traveled to people’s homes but she also worked in some of the schools and at the Hillside clinic helping people gain functional and cognitive ability and independence. Like all NGOs in the area, Ms. Clifford worked within the constraints of minimal equipment, man-power and support but she was able to maximize her resources to achieve wonderful things in the district. She was a leader in the community on many different levels and it will be vital to the community that she be replaced in the future.

2.       CARE- Belize- is one of the leading providers of rehabilitation in the country. They are a non-profit organization which was established in 2001 to organize rehabilitative services for children (0-6 years old) with special needs and disabilities. Currently CARE has only one rehabilitation field officer (RFO) working in the Toledo district named Andrea Coc who was trained by CARE and has been providing rehabilitation services in the homes of 25-32 people over the past several years. Ms. Coc is Belizean and has a relational approach to rehabilitation. She spends a lot of time educating the caregivers and helping adapt the homes and equipment to facilitate higher level function for her kids. She is able to see each patient on an average of one time per month and CARE does provide limited equipment to patients that was either donated or made by CARE.

3.      BCVI- was established in 1981, aims to improve the quality of life for all Belizeans through comprehensive eye services. They are widely considered the country’s leader in eye care services and rehabilitation. BCVI’s staff in Punta Gorda works in eye glass production, rehabilitation, eye care (optometrists and support staff), and secondary eye care (ophthalmologist, nurses and support staff) and provide services in PG and the surrounding villages. Services are sustained by grants from international agencies, National Health Insurance, fundraising and income from services.

4.      Special Education Unit, Ministry of Education- was established in 1991 by the Belizean government to oversee the integration and education of all children with special educational needs in the country. Learning disabilities are very prevalent in the Toledo district and many schools are having difficulty with the integration of children with special needs into mainstream classes. These kids often require specialized attention and the teachers are often overwhelmed and unable to give them what they need. The Toledo district has a special education office in PG and many people claim it is currently understaffed. Because of this, they are unable to provide the services that are needed and many of the villages feel they have been “forgotten”. The Methodist school in PG has a special education class taught by teacher Alex but he admits he is not properly trained and does not do an adequate job. Many people are of the opinion that the special education in the Toledo district is very poor and these kids are being severely neglected.                    

5.      Project HOPE- is one of only two organizations who address the needs of the elderly in the Toledo district. HOPE is a group of volunteers who provide social opportunities for approximately 120 elderly throughout the Toledo district. They have the only bus in the district that is wheelchair accessible but despite this, transportation is still difficult so most of the people who attend are from PG or within close proximity. HOPE meets once a month in the Red Cross building in PG but because of space limitations, they are only able to have approximately 20 people per month. The purpose of the group is primarily a social outlet but Hillside contributes basic medical screening and monitoring and the students give monthly health education talks.

6.       HELPAGE- is a small group of volunteers who work with the elderly on a weekly basis. Resources are very minimal but they are attempting to meet some of the needs of 50 people over the age of 60 in the area. Every Monday they serve the people lunch at their office across from the PG hospital and they sometimes have clothing sales and social activities. They have been around for awhile but they have not developed much due to limited resources and minimal collaboration with other organizations. They do have a very nice building that could be utilized for various activities if more program development occurred. 

7.      Special Needs Association of Toledo- is a community based organization that started as a support group for parents, friends and well wishers of children with special needs in Punta Gorda Town . The organization started in September 2005 and to date has a membership of fifty women, men and children with special needs. Its mission is to improve the quality of life of people with special needs by advocating for the creation of an enabling environment for them to lead economically and socially productive lives; allowing them to develop to their fullest potential while safeguarding their legal rights, and addressing their social and cultural needs. This is a very new organization and they have just recently put their mission, goals and objectives in writing. One challenge they face is finding dedicated people with loved ones with special needs to participate in the planning and fund-raising for the organization. Some families are already burdened and have difficulty making other commitments, other families are embarrassed or just don’t care enough to participate in this kind of organization. This is a wonderful idea and could be of great benefit in the community.

8.      PG Hospital- offers no rehabilitation services at this time. They do have assistive equipment but restrict its distribution. They also have no referral system set-up to send people to rehabilitation services in town. One department that is of benefit is the public health department. This department offers many services such as maternal and child health, vector control, public health inspection, immunizations, health education among others. One program the hospital offers that could be useful for people living with disabilities is the psychiatric counseling. This department has two psychiatric nurses that offer psychiatric counseling to patients and their families both in PG and in the rural villages.

9.      TOLCA- was described by Steve Enendu, director of TOLCA, as an extension of UNICEF in the Toledo district comprised of multiple governmental and non-governmental organizations aimed at improving the lives of children and adolescents in the Toledo district. They are not currently working on any projects concerning children and adolescents with disabilities but have expressed an interest in doing so in the future. One consideration is making some of the high schools in the district more handicapped accessible with ramps and assisting in the funding of future research regarding disabilities. 

10.  Ministry of Human Development- As previously discussed, this agency within the Toledo district is currently only able to assist approximately 180 people living with disabilities with financial assistance only on average of $5 per week.

11.  Ministry of Health- It is the role of the Ministry of Health to ensure a better quality of life for all Belizeans. The Ministry’s role is to maintain an environment that is conducive to good health and wellness within a framework that ensures equity, quality and accessibility. Among the departments are: environmental health, maternal and child health, mental health unit, nutrition and vector control among others.

12.  Bob Farley- a missionary from Texas who has been living in the PG area for the past 7 years feels a “calling” to be involved in the lives of people living with disabilities. He is very close to securing the funding and government’s permission to purchase 25 acres of land approximately one mile west of Jacintoville. His vision is to build a 6400 square foot complex that would be available to provide rehabilitative and special educational services. His vision is for him to provide funding for the construction of the building and future sustainment. He would need someone to manage the medical and educational aspect of the building and the logistics of the use of the facility. He wants the designing and utilization of the building to be a collaborative effort with all the organizations dealing with the disabled involved.

Discussion

The results of the survey and organizational assessments reveal some of the problems people with disabilities experience on a daily basis. Many of these problems go unnoticed by society which leads to further difficulties that could be avoided. The results of this study demonstrate that disability has no bias and can affect any person regardless age, sex, ethnicity, or where they live and it can occur at any point in time. Most disabling conditions are preventable with birth complications, accidents, and inadequate prevention and treatment of diseases contributing to the majority of disabilities. The most prevalent conditions reported in the study were cerebral palsy, developmental delay and strokes and one program that is lacking in the district that could reduce the severity and incidence of these conditions is an adequate disability screening and early intervention program. It makes sense that education along with early identification and intervention could facilitate proper health care, adaptive equipment distribution and therapeutic interventions which in turn would instill hope in the person and the family. The prevention of strokes and other conditions is a very challenging task which will require a lot of organizational and social change and education which is just beginning to be addressed through the ministry of health and other NGOs.

These issues and others are some of the issues that local people feel the mission organizations in the Toledo district fail to address. They greatly appreciate the work they do but they feel they do not do enough for sustainability, development and training of local people. For example, people believe Hillside does a lot for the district, but some feel they do not do enough to educate people how to prevent conditions or care for themselves or others. People are concerned that if Hillside ever closes, no one in the district would be able to continue the work they do for the people. Ideally they would like to see organizations like Hillside either help train people directly or help sponsor them in attaining proper training or degrees. One concern with this approach is the fact that if people are properly trained, they may not be able to find employment in the area or they will leave to find better opportunities (the “brain drain” effect). Because of this, it does not make sense to expend valuable resources in this way. CARE actually has a formal training program for rehabilitation field officers but they are currently unable to train people because of the lack of employment opportunities and funding problems. The government of Belize and the ministry of health need to be involved in the development process in that jobs need to be provided upon training and education of individuals for this type of program to be successful.

The most prevalent disabilities discovered in the survey assessment involved basic activities of daily living such as bathing and dressing. These activities often provide a person with a sense of dignity and pride. The study also identified functional activities such as walking, standing, squatting and riding a bike to be very prevalent and these activities allow a person the independence to go places and do things when they want or need. Finally, the study showed cognitive issues such as the ability to rationalize, socialize and make decisions to be very prevalent in the district. The cognitive aspect of a person is a primitive component of a person’s life and what many people would say define a person. Activities of daily living, functional activities and cognition are vital aspects of a person’s life and are often taken for granted by many able-bodied people. They don’t realize how important these activities are to a person’s pride and life until they are taken away. In many cases, rehabilitation can help restore some level of independence to people with functional and cognitive difficulties thus helping restore some level of dignity, pride and independence.

Not only does a disability affect the individual, it can affect the family and community as well. These people have difficulty caring for themselves, require a lot of social support, and have difficulty contributing to society.  An example of this is an elderly man who suffered a stroke and his son. His son has to ride his bike approximately 4-5 miles one way into PG to get medications for his father and he has to physically assist him with many activities of daily living. This has been very physically and emotionally demanding on the son and he is unsure how much longer he can care for his father in this manner. Without the son’s efforts, the father will not be able to receive the proper medicine and exercise for his condition and will live a lower quality of life as a result. Rehabilitation can help change the lives of these people if better access and more interventions were available.

According to the survey assessment, most people go to a health provider when their self care is limited, when they are sick, or when they can not socialize or participate in leisure activities. Fewer people sought out help when they were in an accident or in pain. These findings demonstrate the value people put on independence and social interaction.

Because all the participants sought out medical treatment on their own, it was difficult to determine reasons for not seeking out treatment for their condition. During some conversations, people did express reasons for not returning for continued treatment and they were primarily transportation and financial difficulties. Other people expressed a lack of confidence in the nursing assistants in their community or the doctors and nurses in PG and they would rather wait for someone from Hillside or another mission team from the United States to come to their village. The problem with this is the Hillside mobile teams reach less that a quarter of the villages in the district and the medical mission teams even fewer. In addition, Hillside reaches each village every 4-6 weeks, if roads allow, and the mission teams are typically once a year. Many of the mission teams also have good intentions but fail to understand the cultural and social issues of health in the villages and how to adequately address the problems.

Another problem with mission teams is the lack of follow up care which is illustrated by a man in one of the rural villages. Mr. C developed a very serious leg problem due to what he believed was an “obia”, or curse that was put on him by a jealous man in the village. He went to Belize City to try and save his leg but they were unable. A medical mission team from Texas came to the village and gave him a prosthetic leg but left with no follow up care. What they didn’t realize was the prosthetic leg did not fit him properly and he actually developed wounds and a lot of pain, fortunately they did not become infected. In addition, the leg was very heavy and not practical for farming which was his major source of income. 

People also do not return for follow-up care because they have no caregiver and social assistance at home. A common scenario is when the father is out working, the mother can’t leave home unless she takes multiple kids with her which poses many challenges. An example of this is a family living outside of PG. This family has 4 children, three of whom are disabled, two severely. The father had been working, but was involved in an accident in which he suffered a traumatic brain injury which left him unable to work or care for the children. This leaves the mother alone to care for these needy children. Though she desires to do all she can for her children, she just doesn’t have the financial means or the physical ability to care for them properly. It is extremely difficult to access medical or rehabilitation services and if it wasn’t for the home care she receives from Hillside rehabilitation and nurses, she would not be able to get the appropriate assistance in town and their quality of life would be significantly affected.

Another example of some of the difficulties people face at home was seen with a family in another rural village. A man fell into a hole and fractured his foot and was unable to work in the fields and provide for his family for 6 weeks. Though he had two sons, one had left the village to pursue better employment and the other had just tragically committed suicide a week earlier. This man and his family were running out of food and had no options for acquiring more. He was quite troubled by the whole situation and didn’t know who to reach out to for support.

There are approximately twelve organizations in the Toledo district that are attempting to meet the needs of people living with disabilities. As one reads through the list of organizations, it appears as if a lot is being done in the district, but for a district of 27,000 people, this is not the case. There was only one licensed occupational therapist and one “NGO” trained rehabilitation field officer, both of whom were primarily seeing kids aged 0-6. Now that Ms. Clifford has left, this leaves only one trained provider in the district. There are some organizations helping with the disabled but most are very specialized in their mission and are operating on very limited resources and man-power.  Because of this, not everyone who qualifies for these services are being reached and some people do not have the correct services available for their needs.

The survey and organization assessments showed many gaps in the services that need to be addressed. Issues such as transportation, learning difficulties and social support at home are areas of great need, and more equipment needs to be available to the people. Minimal services are available to the adolescents, middle-aged and elderly and they make up a large percentage of the people with needs. Money, personnel, equipment, space, ideas, and dreams are all vital to an organization’s success and the biggest challenges for most organizations in the Toledo district are often the lack of these resources. Most of the organizations in Toledo maximize their resources and they often feel they could do more “if only…”. One approach to more effectively maximize resources is to facilitate more collaboration amongst the participating organizations in the district. The collaboration of resources and ideas would expand a district’s ability to reach out to the disabled and minimize the gaps in services.

 There seems to be more interest in national statistical services in the field of disability throughout the world. Over the past several decades, national efforts to collect disability statistics have increased significantly, specifically since 1981 which was declared the International Year for Disabled Persons.  However, this increase is due mainly to the inclusion in the census of a question or questions on disability which can often be ineffective in collecting data. Some countries have included a special module on disability and only a few countries have undertaken a special disability survey (9). Some research institutions have attempted to design a standard tool and survey methodology so that disability can be measured uniformly and appropriately throughout the world. The London School of Tropical Medicine is one of those institutions and they are currently in the middle of analysis from a study performed in Rwanda . The University of Belize supposedly did a prevalence study throughout the Belmopan area but the results and methods of the study have not been found yet at the time of this paper.

National registers of persons with disabilities are rare, and the lack of international standards to guide the production and compilation of statistics in the field of disability is a major problem. As a result, the quality, completeness and detail of existing statistical information are usually inadequate for national policy and program needs (9). The Toledo district is in great need for data regarding disabilities to help guide policy development, allocate time and resources, and to increase public awareness. Currently no effort has been made other than the 2000 census to collect prevalence or qualitative type data in the district. 

Recommendations

1.  More rehabilitation specialists

             With one remaining rehabilitation specialist in the district and a large population of disabled people, there is a strong need for more trained personnel with a long term presence in the district. It will be vital to the people and the rehabilitation community that Hillside continues working to find a long-term replacement for Ms. Clifford. There has been some question as to the feasibility of Hillside supporting another therapist and a lot of this questioning may be the result of poor documentation and productivity records. New assessment, treatment, and weekly productivity forms have been developed to assist Hillside in tracking patient care and outcomes, and as a result, more accountability will be expected from the future therapists.  Once a long-term rehabilitation specialist is established, many feel a program that mimics the the nursing, medical and physician’s assistant student programs would be very helpful in increasing the number of rehabilitation specialists in the Toledo district. There is enough work for this type of program to be established and there is interest in many of the universities throughout the world. For instance, the University of Evansville , in Evansville , IN has already established an international clinical program for its school of physical therapy since 1995 and has been sending multiple students throughout the world on a yearly basis. The University of Wisconsin currently has several students interested in doing international work and discussions have been initiated with the director and clinical coordinators regarding elective opportunities for students in places such as Belize . There is also a variety of professional rehabilitation international groups that could be utilized in finding interested students and professionals (see appendix C). Of course logistics such as housing, transportation, etc. will need to be further considered by the Hillside board and other organizations in the district.

2. Organizational collaboration

One of the best ways to maximize a community’s resources and abilities is to involve all participating people and organizations in the collaboration of resources and ideas. This could be achieved in the Toledo district by the establishment of a central rehabilitation or disability alliance that would meet on a regular basis to discuss the current programs and to discuss how the alliance could work together to help each other achieve individual and community goals. The purpose of this group would be to reach out to people of all ages and strive to address the different components of health which is defined by the World Health Organization (WHO) as: “A state of complete mental, physical and emotional well-being and not just an absence of disease or infirmity”. Some would also add social and spiritual well-being. Here are ways that the current providers are working and ways collaboration could be achieved:

1.      Mental well-being: learning disabilities and emotional needs. Currently learning disabilities is an area that needs to be improved in the district. The SEU is the only group addressing these needs and the deficiencies with the SEU were previously discussed. More collaboration of ideas as to how to address this issue could be facilitated in a larger forum like an alliance. The emotional needs of people and care-givers are another gap in services in the district. Groups like SNAT and the psychiatric department in the public health department would be excellent resources to collaborate ideas and resources with so that more people and families could be reached. This alliance could also be a great way for groups to educate each other.

2.      Physical well-being: medical and rehabilitation. The medical component is already established with Hillside and the PG hospital. Hillside is already collaborating with groups such as the PG hospital, HOPE, Ministry of Health, and CARE to reach more people in need of primary care services. Of course, communication could be better and a forum like an alliance would be a good way to facilitate this. The rehabilitation needs of the district are an area that collaboration of resources and ideas could make a big difference. Hillside and CARE are already collaborating and this relationship needs to continue in order to reach the kids aged 0-6. A big gap still remains in the adolescents, middle aged and elderly. Groups like Helpage and HOPE are already working with groups of elderly on a social level but some discussion needs to be facilitated as to how they could integrate therapeutic exercise into their current plans. A referral system also needs to be established between the PG hospital, Ministry of Human Development, Hillside, and CARE and some discussion needs to occur to determine an effective way to utilize and distribute the limited space and equipment that is available at the PG hospital, Red Cross, and Helpage.

3.      Social well-being: patients, care-givers, elderly, and social awareness. Social opportunities for younger people with disabilities and their care-givers is a major gap in the district. SNAT’s mission involves the social integration of all people and care-givers living with disabilities but they are just being formed and have very limited resources readily available. More collaboration of ideas and resources needs to be put in to addressing this aspect of health in the community. Finally social awareness of people with disabilities is a very important aspect to community development that needs to be addressed. There is a lot of potential for social change in that Belize has a very close sense of community and word quickly gets around about new ideas and happenings. This alliance would need to make this a priority if people living with disabilities want to have a chance of integrating into the communities and leading healthy, productive lives.

4.      Spiritual well-being. In the short-term, involvement of the local spiritual community needs to be considered for people who’s lives are influenced by faith. This can be a very powerful means of giving people hope and strength to handle difficult situations. The rehabilitation community must not underestimate this and needs to involve the church when appropriate.

In summary, these were a few suggestions as to what could be accomplished if organizational collaboration occurred. Many more ideas such fund-raising, reaching out to international groups, and political activism would develop once people started talking and dreaming together. Collaboration of resources and ideas is an essential component to addressing the needs of people living with disabilities in the Toledo district. Each group can still have its individual mission, goals, and objectives but a bigger vision for Toledo needs to be established if large change is to occur. Great things can be accomplished when everyone works together

3. Early screening and intervention

A program that is currently implemented through the ministry of health that could be utilized as a screening program is the current immunization program. This program boasts a 97% immunization rate in children which is one of the highest in the world and could be used to screen over 90% of the children for disabilities and begin early intervention if necessary. Due to the large number of children to be screened in the Toledo district, any method of case identification must be accurate, inexpensive and simple to administer. There are several tools that can be used, one in particular was developed by a University of Wisconsin researcher, Dr. Maureen Durkin PhD, DPH. She along with her colleagues developed a screening tool called the “Ten Questions Screen” (TQS) that has been rigorously studied and tested in a variety of settings throughout the world (14). The TQS is a 3-5 minute interview in which most responses are based on assumptions and conclusions derived from observation of behavior by the caregiver for children. The TQS is not an assessment tool rather it is a sensitive screen for six types of disabilities in children ages 2-9 with serious disabilities. Its sensitivity is much lower for the mild cognitive, visual and hearing disabilities not previously identified and it has a higher than desired rate of false positives (15). Despite these flaws it helps create awareness about childhood disability in the community and offers a good basis for the disability expert to start designing community-based identification and intervention of the disabled children in the community. The TQS or a tool similar tool could be easily performed when the booster is administered at around 4-5 years of age.

If adding the tool to the current immunization program is not a feasible option, another option would be to add this tool to the current growth monitoring program that is currently implemented through the ministry of health. This program monitors the growth patterns of children during the early years of life and attempts to identify “at risk” kids.

A third way of screening for disability is to utilize volunteers from overseas. One possibility is the utilization of the newly formed University of Wisconsin Global Health Inter-Disciplinary Alliance . This extremely diverse group of University students is made up of student representatives from the schools of medicine, public health, physical therapy, nursing, pharmacy, communicative disorders (speech and audiology), veterinary medicine, social sciences, engineering, anthropology, among others, and has expressed interest in doing a collaborative medical trip to address health needs around the world. Perhaps this group or another of its kind could be utilized to do a health screening project in several of the 12 registered pre-schools in the Toledo district. If successful, this could be a model of a yearly program to screen kids as they enter the Toledo school system. Cherry Mae Avilez of the Toledo ministry of health has expressed a strong desire and need to develop a pre-school screening program of some sort in the Toledo district; perhaps this is a way of doing so. The advantage to this approach is that more thorough screening in the different disciplines would be achieved but the potential downfalls are the dependence on foreign volunteers of varied disciplines which is not always guaranteed from year to year and only school bound kids would be screened. Perhaps a long-term goal would be to utilize the university students to help train local personnel such as teachers, parents, and nursing assistants in properly screening the children themselves.

In summary, a screening tool like the TQS could easily be administered as part of the routine growth monitoring or immunization booster programs and could help identify children with cerebral palsy, developmental delay among others. International volunteers could also be utilized to do more in depth screening to reach the school bound children. All three of these options would allow for early detection and intervention which could change a person’s life.  

 4. Community education and training

            Educational outreach and patient education needs to continue as is but more could be done in this area. One potential opportunity would be to collaborate with the University of Belize- Toledo center in PG. The center administrator, Stanley Nicholas, has had previous discussions with Hillside about guest lecturing at the University and has recently expressed interest in collaborating again. He said in the near future it would be possible for visiting doctors, therapists and students to do guest lectures on different health related topics, perhaps during the HSCI 200 class: Health and Family Life. This class is part of the primary education program and it is also offered to the public for a fee. This could be a good opportunity to expand the health curriculum to include concepts such as basic health care and prevention; the impact of disabilities on the individual, family, and community; how to identify and deal with children with disabilities; and what different treatment options are available for people with disabilities. A long-term goal could be to develop an actual class that would address many of the issues surrounding disabilities in greater detail although this would entail more planning and involvement of the main office in Belmopan . CARE has considered doing this with the nursing and education programs in Belmopan with the goal of training nurses on screening for disabilities and teachers on how to deal with children who are disabled. This approach would not reach a large amount of people directly but would reach many of the future teachers and leaders in the Toledo district.

            Other potential outreach training and educational opportunities would be to talk to the village “alcaldes” (leaders) and discuss what local interests are regarding health and disabilities. For example, two local healers from the village of Barranco expressed a need and desire to teach basic massage and stretching techniques to people in the village. They were made aware of the Bella Mani Institute for massage therapy in Belize City and Ms. Edwards in Eldridge, but they were thinking more of a one-day workshop with Hillside and that could easily be arranged and could be a model for future workshops in other villages.   

            In summary, some people in the district realize the importance of education and training for the long-term survival of their community and are asking for these services. They realize prevalent conditions like strokes could be prevented or minimized through basic health education and physical limitations could be minimized through training of the people and caregivers. It’s the medical community’s responsibility to respond appropriately.

5. Health Statistics

Health statistics regarding disabilities is vital to future development in the district. The 2000 Belize census attempted to quantify the magnitude of the problems in the Toledo district but many questions surround the accuracy of the figures. Several organizations such as TOLCA, CARE, Ministry of Health and Hillside have expressed an interest in collecting this kind of data, but no attempt has been made. This report will present two approaches describing ways to collect prevalence type data to help understand the magnitude of the problem, and one approach will be suggested to collect qualitative type data to describe the experience of someone living with a disability.

A census-type study would assist in the collection of prevalence data regarding the different types of disabilities in the district. This type of study would be the best in terms of speed of data collection and compilation but it would be the most complicated in terms of logistics and resources. Survey design is a very complicated process and many things need to be considered such as how to define disability, how to ask the questions, what questions to ask, and how to diagnose a disability so that the proper information can be gathered, analyzed and disseminated appropriately. Not many prevalence studies specific to disabilities have been performed throughout the world because of these issues. Carl at the PG CSO was very helpful in discussing options for gathering data on disability. His office has a lot of experience carrying out surveys and he agreed a census study in the Toledo district would be very challenging but he offered suggestions as to how his office could help.

A second approach to collecting prevalence type data would be to develop a district registry or data-base that would document people with disabilities. The advantage to this approach is that it would be constantly updated and accurate data about who and how many people living with disabilities would be available once the process was implemented over a period of time. Many organizations such as BCVI, Hillside , Ministry of Human Development, Social Security, Special Education Unit, and CARE already have data-bases created which could be combined so that a better sense of the magnitude of the problem can be available at any time. Other creative ideas need to be explored such as utilizing the NHI program in some manner to help gather and organize this type of data.

The immunization and growth monitoring programs previously mentioned could be great means of adding to the registry and medical volunteer groups that come into the district on a regular basis should also contribute data to the registry. Starting in 2007, Cherry Mae Avilez of the Ministry of Health will be responsible for coordinating all the medical volunteer groups who come into the Toledo district. It should be required of these groups to collect basic demographic and medical data along with treatment administered and this information should be given to Ms. Avilez upon completion of the mission. Of the data collected, information on disability should be included and entered into the district registry for all participating groups to have access too. Of course patient confidentiality will have to be considered so limiting access to the data to a select group of people will need to be considered when establishing a registry.

Finally, a third approach to gathering data in the district would be to perform a larger scale study like the one performed to guide this needs assessment. This pilot study is more of a descriptive type study in that it helps to “describe the disability experience”. It would not be practical for prevalence type information due to the complexity of the survey, but it would provide much more detailed information which could help more in program development and resource allocation in different communities throughout the Toledo district. Ultimately, both types of studies need to be performed to get a complete understanding of the magnitude and impact of disability in the Toledo district.  

6. Hillside development

            The Hillside Health Care Clinic has developed into one of the leading primary care centers in the Toledo district in less than 6 years. It is a leader in the community in many ways and the future is promising. The mission is as follows:

“Hillside Health Care International (HHCI) is a faith based, non-profit organization dedicated to serving God by providing health care and disease prevention to the people of Southern Belize .  HHCI is devoted to improving the Belizean quality of life through medical care, health education, and community outreach.  HHCI promotes healthy global attitudes by offering a culturally-rich educational program for medical volunteers that challenges them to better understand their role in international health care”.

This paper has presented many challenges of people living with disabilities in the Toledo district. If Hillside want to continue to “improve Belizean quality of life through medical care, health education, and community outreach”, more effort needs to be taken to reach more diverse communities including people living with disabilities. This is possible without a large increase in financial demands. The first issue of Jericho Pathways bulletin in2001 quoted a representative of Hillside as saying; “ Future dreams for the Medical College of Wisconsin’s participation at Hillside is to introduce interdisciplinary teams to include dentists, physical therapists, nurses and occupational therapists” (16). Hillside has done a wonderful job utilizing the resources available at medical schools around the globe, the same opportunity exists in other professions that could improve the quality of life for many people. Though the Medical College of Wisconsin no longer formally supports Hillside , more intimate collaboration with other universities such as the University of Wisconsin could open doors to interdisciplinary involvement in Toledo . World-class programs exist with students interested in serving people throughout the world. As previously mentioned, the University of Wisconsin has a interdisciplinary global health alliance made up of over 10 professional schools throughout campus with highly educated and motivated students looking for opportunities to serve. This alliance could be utilized in the manner previously discussed as a health screening team in the pre-schools, or it could be used to do needs assessments similar to this one to determine how the individual professions could be developed and utilized in the area.

            This assessment is being performed as part of a requirement for the masters of public health program through the University of Wisconsin School of Medicine and Public Health. Continued collaboration with the public health program needs to continue and this relationship should be used as a model for other professional schools and universities for future program development. There are many projects that could be done in the area of public health and great resources are available through the public health department at the PG hospital and through ministry of health. There are highly trained and qualified people who could act as mentors and preceptors for future public health work. 

            Other professions such as veterinary medicine and pharmaceutical health are needed throughout the district. Hillside has never had a pharmacist or pharmacy student and they could be of great benefit immediately. Hillside just received permission to receive dental equipment and will be in need trained staff to utilize it. Currently there are no speech therapists in the district and audiological services are in great demand. Villages such as Crique Jute and Monkey River have requested assistance with special education and Aquacate is interested in assistance with nutrition in the form of education and a garden. These villages have leaders and visionaries who know what would benefit the community and Hillside , in combination with universities around the world, needs to work along side them to address more issues associated with the health of a person and community. All of these services and more could be developed into programs like the medical/PA program currently established and reach out to other parts of the community. To help with the housing challenges and to promote a “culturally-rich educational program for medical volunteers”, perhaps a home-stay program could be established for students to gain better insight and appreciation of the diverse cultures found in Belize and to help understand how people’s lives are impacted by their health.

What is being proposed is that Hillside should consider building on its holistic approach to medicine by broadening its scope of providing care to the people of Belize . There are models of organizations throughout the world that have begun as primary care providers and have reached into communities in other ways that should be investigated.

Finally, Hillside should develop a rehabilitation program for a model for future development. The needs assessment is done and ideas have been set in place for a comprehensive rehabilitation program to be developed. A therapist should be recruited and serious consideration needs to be done regarding housing options and stipend money to recruit experienced long-term volunteers in the future. Many people living with disabilities are not being reached so a rehabilitation program similar to the medical/PA student model should be established in the near future. Collaboration with other organizations should continue to be expanded upon and a relationship with Bob Farley should be pursued so that Hillside can contribute more to the needs of the disabled.

Hillside should continue to reach out to the community like previous medical directors successfully did and resources available at the University of Wisconsin and other universities of its kind need to be utilized and developed for future benefit to the Toledo district.  Of course, as these ideas grow, more resources and planning is required, but these are dreams and visions of what Hillside could be in the future. Who would have thought Hillside would have accomplished all it has in such a short period of time. Aim big and who know what could be accomplished in the next 6 years.

Conclusion

            There are many people living with disabilities in the Toledo district who are attempting to “win” in the game of life but their voices are not being heard. Their definition of winning is often different then most able-bodied people in that for many, winning is just having equal opportunities in the game of life. Currently, many of the disabled do not have equal opportunities because of the physical challenges they face personally or within the environment. They also face many social challenges in terms of limited laws and ignorance of people. These issues need to be addressed so that change and progress can be experienced at the individual and community levels.

The Toledo district currently has limited resources devoted to people living with disabilities and more can be done at little cost. More therapists need to be trained or recruited and collaboration needs to occur so that more people can be served and resource utilization in the district can be maximized. Screening for disabilities needs to occur to increase social awareness and to provide early intervention to those in need. More statistical data needs to be collected so that a better understanding of the magnitude and impact of disability can be achieved. This data will also aid in future funding and policy development and help to allocate resources in the areas of most need. Finally, more education and training needs to occur so communities can be enabled to provide for their own needs.

This may all sound like a lot of work, but much can be accomplished if people take the time to listen to the needs of their neighbor and attempt to work together as a community to serve each other. As a result, all will benefit.

References

1. http://www.paho.org/English/DD/AIS/cp_084.htm

2. www.belize.gov

3. http://hillsidebelize.net/
4. TOLCA powerpoint

5. The Belizean Child: A Situation Analysis of Children and Adolescents in Belize , 2004. UNICEF; September, 2005.

6. Internet Users and Population Stats. for America , (2004). http://www.internetworldstats.com

7. Tucker- Longsworth L. The Situation of Children with Special Needs and Disabilities. CARE Belize. July 31, 2005 .

8. Belize Census:  http://www.cso.gov.bz/census2000.html

9. Guidelines and Principals for the Development of Disability Statistics. United Nations publication, Department of Economic and Social Affairs Statistics Division. Statistics on Special Population Groups. New York 2001; Series Y, No. 10.

10. Crishna B. What is community- based rehabilitation? A view from experience. Child: Care, Health and Development. 1999; 25:27-35.

11. http://www.travel.state.gov/travel/cis_pa_tw/cis/cis_1016.html

12. Mitchell R. The research base of community- based rehabilitation. Disability and Rehabilitation. 1999; 21:459-468.

13. http://www.cirnetwork.org/idrm/reports/americas/countries/belize.html

14. Mung’ala-Oderaa V, et al. Validity and Reliability of the ‘Ten Questions’ Questionnaire for Detecting Moderate to Severe Neurological Impairment in Children Aged 6–9 Years in Rural Kenya. Neuroepidemiology 2004;23:67–7

15. Muga E. Screening for disability in a community: the ‘ten questions’ screen for children, in Bondo , Kenya .  African Health Sciences Vol 3 No 1 April 2003

16. Jericho Pathways bulletin Feb 3, 2002 , Vol 1, Issue 1 Page 1

Acknowledgments

            First of all I want to thank all the organizations who participated in this project, specifically Hillside Healthcare International, CARE-Belize, and the University of Wisconsin . I also want to thank the University of Wisconsin Latin American , Caribbean , and Iberian studies program who helped fund this project. I want to individually thank Jim Shropshire M.D. who was my academic mentor through all of this and Jeff Nicholson M.Ed., MPAS , PA -C who helped me with all the logistics of getting to Belize . I want to thank Claire Wendtland M.D, PhD for helping me develop the idea of this needs assessment and Lori Diprete Brown M.S.P.H for helping design the survey and preparing me for the project. I want to give thanks to the entire Hillside staff, specifically Mrs. Joycelyn Lopez- Hillside Administrator, Cherrymae Avilez – Belize Ministry of Health and Nurse Fran Choc for all the hospitality and for the wisdom and insight into the Belizean people and health care system. And finally, I want to thank all the patients and caregivers who trusted me and invited me into their lives. It is for you I do this work. Thanks again!

Appendix A: Operational Definitions

-         Disability is a restriction or inability to perform an activity in the manner or within the range considered normal for a human being, mostly as the result of impairment.  (WHO Bulletin, 2001). May be related to movement, vision, hearing, speech, learning, or behavior.

-         Impairment is any temporary or permanent loss or abnormality of a body structure or function whether physiological or psychological. An impairment is a disturbance affecting functions that are essentially mental (memory, consciousness) or sensory, internal organs (heart, kidney), the head, the trunk or the limbs, (WHO Bulletin, 2001).

-         Handicap is the result of an impairment or disability that limits or prevents the fulfillment of one or several roles regarded as normal, depending on age, sex and social and cultural factors.

-         Rehabilitation specialist A professional practitioner such as a physical or occupational therapist who is trained and licensed to practice physical rehabilitation, or a person who has had on-the-job training to provide rehabilitation services.

-         Special Needs refer to children with physical and/ or learning disabilities and social needs who require special services and facilities to allow them to participate in the social activities, education, health, work, etc.