There is an interplay between progress on social inclusion for citizens and Inclusive Destination development. As the general level of accessibility for people with disabilities increases so can the desirability of a location as a destination of choice for the disability community. The influx of tourism dollars can provide for the continued improvement of barrier-free infrastructure.
Below is a paper written by Mojalefa Zacharia Ntlatlapa on the evolving scene in Lesotho in regard to the infrastructure of basic services for people with disabilities there.
Posted by rollingrains at November 20, 2007 03:31 PMINDEPENDENT LIVING CENTRE – LESOTHO AND TRADITIONAL DISABILITY PARADIGMS
By Mojalefa Zacharia Ntlatlapa (B.Phil; B.S.Th; MDisSt.)
Abstract
The Independent Living Centre - Lesotho (ILC Lesotho) is a leader in the application of the socio-political approach to disability services in Lesotho. The philosophical foundation for ILC Lesotho’s very first strategic plan 2007-2011, “Facilitating Independence” is based on consumer choice and control, independence, personal autonomy, self-direction, barrier-free environments, non-dependency services, and consumer leadership.
This article serves to highlight the difference between the Independent Living Centre approach and the previously existing disability services in Lesotho by demonstrating the contrast in approach between its consumer-driven, socio-political paradigm and the medical, charity and/or vocational rehabilitation traditional approaches that have hitherto been used within the Lesotho disability sector.
Guided by the “Draft National Policy on the Inclusion of People with Disabilities into Society”, ILC Lesotho recognises that there are limited allied health services available to people living with disabilities. As consequence among its future development areas, ILC will strive to work with the disability sector to: improve the range and quality of assistive technology available to the Lesotho community of PWDs; develop an outreach service to the rural communities of Lesotho; source out local and overseas opportunities for ILC staff and for the Lesotho disability sector as a whole; as well as to establish a research demonstration, dissemination, and utilisation centre, in order to promote access to information for PWDs, DPOs, other independent living related service providers.
Table of contentsAbstract 1
Introduction 3
Background 3
ILC Lesotho Programmes 4
The Options Coordination Service 4
The Client Therapy Service (CTS) 6
The Independent Living Equipment Programme (ILEP) 7
Respite Services 8
Paradigms/Models of Disability 9
The Socio-political (Independent Living) and Traditional Paradigms 10
Independent Living and the National Policy 11
Future Directions for the Independent Living Centre - Lesotho 14
Development Areas 16
Conclusion 16
Values 17
We value our clients 17
We value our staff 17
We value our relationships and partnerships 17
We value prudent management 17
Introduction
The concept of the Independent Living Centre – Lesotho (ILC Lesotho) has been in existence since 2006 and has been incubating at its current location at the Maseru Industrial Area since then. ILC Lesotho was legally registered under the Societies Act of 1966, in March 2007, as a non-profit making, non-governmental organisation whose ultimate end is to build a vibrant and responsible community that takes care of marginalised severely disabled individuals and families of People with severe and/or multiple disabilities including those who are either infected or affected by the HIV/AIDS pandemic within their communities of origin throughout the Kingdom of Lesotho.The ultimate vision of ILC Lesotho is to provide equipment, home modifications, client therapy and respite services for people with disabilities who are eligible under the Options Coordination Programme, as well as information for the general community. As a registered organisation, the ILC Lesotho has a constitution and is governed by a Board of Directors made up of people with a wide range of professional skills and backgrounds.
The Independent Living Centre is a leader in the national Independent Living services in Lesotho. The ILC Lesotho will assist with database development and facilitate the development of the IL website. The ILC Lesotho website will run a home page for IL information and advice service, research demonstration, dissemination, and utilisation centre, and collate detailed information about the equipment and aids available in Lesotho and the neighbouring cities of South Africa. The ILC intends to work with the Ministry of Health and Social Welfare to implement its strategic agenda (2007-2011) for Families and Communities. The “Draft National Policy on the Inclusion of People with Disabilities into Society” has also guided the development of this organisation.
Background
The Independent Living Centre – Lesotho is a vibrant, client focused organisation that intends to assist people living with disabilities, including the frail age, to achieve greater independence. Our strongest knowledge base is assistive technology – aids and equipment - which assist people living with disabilities and their carers to remain safe and independent in the community. Our staff will be composed of a multidisciplinary team, consisting of Occupational Therapists, Physiotherapists, Registered Nurses, Speech Pathologists, Special Needs Educators, Social workers and other Therapy Aids.We intend to build up a flexible and responsive administrative team and a Management Group who work with the Board, staff, clients and stakeholders to achieve positive organisational outcomes. Our aim is to pride ourselves on our productivity which will be achieved through the effective use of technology, staff using their time efficiently and managers, staff and stakeholders working together to identify innovative approaches.
The philosophical foundation for our very first strategic plan 2007-2011, “Facilitating Independence” is based on consumer choice and control, independence, personal autonomy, self-direction, barrier-free environments, non-dependency services, and consumer leadership. In conformity with these philosophical principles, the Board of the Independent Living Centre strives to work with the Management and potential service users to implement this plan. There have been several discussions with other stakeholders to ensure that this plan fits with other developments and changes occurring within the disability sector and other health sectors in Lesotho.
ILC Lesotho Programmes
The centre plans to kick-start its services with the establishment of four programmes. These will include:
• The Options Coordination Service,
• the Client Therapy Service (CTS),
• the Independent Living Equipment Programme (ILEP) and
• Respite Services
The Options Coordination Service
This programme will coordinate the allied health assessments for Clients with Physical, Neurological, Sensory, Intellectual disabilities and Traumatic Brain Injuries. The Options Coordination Service will contribute to planning and to the development of community-based services and informal support networks to ensure that individuals with disability are able to achieve their full potential and attain a quality lifestyle within the community of their choice.The Options Coordination Service will to provide specialist knowledge and expertise through the following programmes:
• Options Coordination - for children who have physical and neurological disability or brain injury
• Options Coordination - for adults who have a physical and/or neurological disability
• Options Coordination - for adults who have acquired brain injury
• Options Coordination – for people who have intellectual disability and/or autism.
• Sensory Directions - for people who have sensory disability such as hearing and vision impairmentsWe believe that access to information assists people to make an informed choice in relation to their specific needs. Information is collected on all aspects of living with a disability and shared with anybody who asks. The Options coordination service will contribute to the planning, provision and evaluation of direct services to people with disability and their families inter alia by:
• Providing information
o Printed information will be available for all visitors to the Centre including product description, product suppliers and approximate cost;
o An extensive database will be maintained on availability of equipment, manufacturers and suppliers within Lesotho and South Africa;
o A directory of organisations and services offering assistance to people with disabilities;
o Details on design and access and the relevant Australian Standards.
• Displaying equipment
o A large range of aids and equipment is on display. Items can be demonstrated or visitors can try out products to determine which equipment best suits their needs.
The Client Therapy Service (CTS)
CTS will provide therapy, training and equipment prescription for, and together with, persons with disabilities in the community. CTS may provide services in the client’s home, work or educational environment, day service and/or at the ILC. Assessments for equipment such as wheelchairs may need to take place at the CTS office. CTS Occupational therapists will be highly trained in the assessment, prescription and training for accessing systems, which will enable people with disabilities to undertake daily tasks with greater independence. Under the CTS therapists will provide particular services for people with different types of impairments. These will include:
1. Communication
Here Speech Pathologists can provide:
• Communication, speech and language assessment and therapy programs,
• Augmentative and Alternative Communication (AAC) system prescription, support and training, for those with little or no verbal communication.
• Training for parents, care-givers, community staff, teachers and relevant others within the community to help support those with communication difficulties.
2. Mealtimes
Speech Pathologists can provide:
• Assessment and management recommendations for swallowing and mealtime difficulties
• Written documentation (mealtime guidelines) and training for carers, outlining how to safely assist clients with swallowing.
3. Mobility
CTS therapists will be able to:
• Prescribe suitable wheelchairs, seating and modifications to mobility equipment, and advise on and prescribe standing or walking frames
• Develop chest care and hydrotherapy programs.
4. Manual Handling
CTS therapists are able to:
• Provide manual handling plans for carers to assist with safely transferring clients
• Provide advice and suggestions for manual handling equipment.
• Provide training to care-givers on lifting and handling methods for individual clients.
5. Activities of Daily living
ATS Occupational Therapists will provide expert advice, assessment and training in supporting clients with disabilities to undertake day-to-day activities. These may include:
• Advice and suggestions on home modifications, including bathroom equipment
• Splints, wheelchair trays and customised beds
• Mechanical and electrically operated hoists.
• Wheelchair driver training.
The Independent Living Equipment Programme (ILEP)
ILEP will cater for people who have permanent disabilities and are clients of Options Coordination. The role of the ILEP is to assist people with disabilities to remain living safely and independently within their homes and the community by providing them with assistive technological equipment.ILEP will provide the more complex types of equipment designed for use by people with disabilities. The types of equipment available from ILEP will include (Please refer to the ILEP policy for full details):
• Bedding: Electric Beds, Pressure Management Overlay Communication Devices
• Home Modifications: Ramps, Bathrooms, Kitchens, Doorways
• Mobility Devices: Specialised Footwear, Children?s Walking Frames, Adult walking frames, Manual Wheelchairs, Powered Scooters, Powered wheelchairs, Children?s Buggy Pusher, Children?s Manual Tricycle, Children?s Manual Castor Cart, Children?s Powered Castor Cart
• Orthosis and Prosthetics: Orthosis, Mammary Prosthesis, Wig
• Bathing and Toileting: Mobile commode chair, Static shower chair: customised, Static toilet chair: customised, Change Table, Children’s Toilet Chair, Children’s Bath Insert and Continence Aids (reusable only)
• Seating: Adult Postural Chairs, Children’s Postural Equipment, Electric Recliner Chairs
• Manual Wheelchair Transport: Portable ramps for wheelchair transport, Tow bar mounted manual wheelchair carrier,
• Hoists: Mobile Hoist, Ceiling Hoist, Portable Bath Hoist, Car hoist for a person, Roof mounted manual wheelchair hoist.
Respite Services
Respite Services will lead in developing a countrywide, comprehensive, and integrated home and community-based service system that supports dignity, diversity, and choice for persons with disabilities, their caregivers, and families.Providing full-time care for someone with severe or multiple disabilities that involve health problems such as HIV/AIDS, in our case, can be fulfilling, but it can also be hard work and leave a carer feeling exhausted and isolated. This is where respite services come in. Taking a break from the pressure of supporting someone who depends on someone's care, can prevent the care-giver from becoming over-tired, stressed, resentful or depressed.
Respite care will help both carers and the people they support to gain confidence and independence, and build new relationships. Using respite services on a regular basis – however happy the caregiver is to be a carer – can re-energise him/her and enable him/her to look after the person they care for more effectively. The key goals of ILC Lesotho's respite services are:
• Public policy will reflect the priorities of ILC's respite services and its advocacy partners;
• All members of ILC's respite services will have access to the information, resources, and peer support necessary to fulfil their leadership role;
• The organisation will have the financial resources to attain its Mission;
• The organisation will have successful working relationships with all partners in the home and community-based services network; and
• Educate and enlist the support of the public in furthering the priorities of ILC's respite services and its advocacy partners.Our services will provide support in the home to give the caregiver regular, planned breaks. A Community Support Worker (usually the same person every time) will visit each week and look after the person who needs support, freeing the caregiver to do other things and have some time to herself/himself. We will offer:
• someone to talk to about the caregiver’s caring routines and responsibilities who can offer practical advice and support
• care that the client's caregiver can be confident in – we will engage professionals who have both disability and mental health expertise, and our staff will respect both the needs of the caregiver and those of the person s/he supports
• information on how to deal with things like social benefits
• a plan of support – drawn up with the agreement of both of the caregiver and the client – so that they can make the most of our services
• flexibility – we aim to give service users the support they need when they most want it, and can also help with emergency, illness or holiday cover
• Consistency – we aim to make sure that service users are supported by the same person week to week, so that they can build a relationship with them.Most respite-care services provide support for as long as it is needed. The maximum amount of time each person can get will vary between about four and ten hours a week. The amount of support the service user will receive will be reviewed regularly.
The service can be withdrawn if our Community Support Worker experiences mistreatment such as insulting or discriminatory behaviour, threats or physical violence from either the carer or the person being cared for.
Paradigms/Models of Disability
Prior to 1970's disability policies revolved around a "Segregation Model". This involved:
• legally sanctioned segregation and exclusion based on widespread fears, myths and stereotypes
• segregated schools
• Institutions without options for integration often referred to a "special"
• why 'special' is not a popular word among disability advocates
• 'Special' often connotes unequal and separate!In the 1970's Rehabilitation/Charity/Medical Models emerged. According to these models, the burden of dealing with consequences of disability rested with person. Attempts were made to medically and vocationally rehabilitate people with disabilities but society had no responsibility to remove barriers. For example:
• For a wheelchair user: no accessible parking spaces – hence a disabled person would have negotiate long distances to get to work site from his/her vehicle;
• At a work-site, he/she would have to negotiate two sets of steps, to get to job on third floor of a non-elevator building;
• A person using braces and crutches, who is forced to laboriously make way up steps, takes 20 minutes to get to worksite instead of two.As a result of the awareness about the impact of institutional barriers imposed by society on people with disabilities, gradually disability policy models began to move to a Socio-political rather than the traditional Rehabilitation/charity/medical models.
The Socio-political (Independent Living) and Traditional Paradigms
The Independent Living Centre – Lesotho (ILC Lesotho) advocates the socio-political paradigm or approach to disability. The chart below compares traditional paradigms such as the medical, vocational rehabilitation and charity models with the consumer-driven, socio-political paradigm.
MEDICAL, CHARITY &
REHABILITATION
PARADIGMS INDEPENDENT LIVING OR SOCIO-POLITICAL PARADIGM
Definition of problem Physical or mental impairment; lack of vocational skill (in the VR system); lack of abilities to think, walk, see or hear (Medical system); lack of ability for independent living skills (charity system). Dependence upon professionals, family members & others is rooted in social attitudes & environments that are hostile. These are the elements that need to be fixed not the person with a disability.
Locus of problem The problem is perceived to rest in the individual who is seen to be sick or incapacitated and needs to be "fixed" in order to become normal. Disability is a common part of the human condition. Some people are born with disabilities while many others acquire disabilities due to common mishaps in real life.
In the medical/charity and/or rehabilitation processes disability is treated as if it is not a strange human factor.
Solution to the problem Professional intervention; treatment (fixing). 1. civil rights & advocacy
2. barrier removal
3. self-help
4. peer role models & peer support
5. consumer control over options & services
Social role The individual with a disability is a "patient" or "client". He/she becomes the object of pity. The individual with a disability is a "consumer," "customer" or "user" of services and products.
Who controls Professionals in Medicine, welfare officers or vocational trainers choose the best intention mechanisms for their helpless patients or clients. The consumer or individual with a disability is the main stakeholder with a right to choose the most appropriate service.
Desired outcomes Palliative care or activities of daily living (in medical system);
Gainful employment (in VR system) or
Hand outs/ disability grand (in charity system). Independent Living through control over ACCEPTABLE options for every day living in an integrated community and/or personal support depending on gravity of the impairment.
Independent Living and the National Policy
Around the globe disabled persons started organising themselves to engage society on the question of their fundamental human rights and basic freedoms. The United Nations has in turn issued a number of documents to this effect. These include:
• The Declaration on the Rights of Mentally Retarded Persons (1971),
• The Declaration on the Rights of Disabled Persons (1975),
• The World Programme of Action Concerning Disabled Persons (1982),
• The United Nations Decade of Disabled Persons (1983-1992),
• The United Nations Standard Rules for the Equalisation of Opportunities for Persons with Disabilities (1993), and
• The Convention on the Rights of People with Disabilities (2006).Lesotho as a member of the United Nations system and other international and sub-regional bodies, such as the Southern African Development Community (SADC), has acceded to several international and sub-regional agreements, declarations, protocols and instruments that commit it to implement and follow certain actions and norms for promoting and respecting the rights of persons with disabilities in the country. United Nations (UN) has put in place the principles of participation, integration and equalisation of opportunities in the World Programme of Action Concerning Disabled Persons. It also set the UN Standard Rules for the Equalisation of Opportunities for Persons with Disabilities.
In addition, Article 2 of the ILO Convention No. 159 on the Vocational Rehabilitation and Employment of Disabled Persons states that “each member shall in accordance with national conditions, practice and possibilities, formulate, implement and periodically review a national policy on vocational rehabilitation and employment of disabled persons.” The UN Standard Rules that recognize the necessity of addressing both the individual needs of persons with disabilities and the shortcomings of society provided a very useful tool in the development of the Kingdom of Lesotho’s up-coming “National Policy on the Inclusion of People with disabilities into Society”.
This policy has been inspired by the Constitution of Lesotho and other national policies, such as, Vision 2020 and the Poverty Reduction Strategy (PRS). The constitution provides for support to persons with disabilities as a principle of national policy through, Part II and Part III of the Constitution of Lesotho 1993 that provide for the Protection of Fundamental Human Rights and Principles of State Policy respectively. These documents call for extensive changes in the environment to accommodate the diverse needs of disabled persons in society. The emphasis is on a fundamental shift from the unfortunate situation that has imposed environmental, institutional, attitudinal and economic barriers between people with disabilities and the mainstream society.
Prior to the drafting of this policy, other national legal instruments that enhance the protection of a person with a disability had already been in existence though without much enforcements mechanisms. These include the following promulgated laws:
• Section 19 (1) and (2) of the Building Control Act 1995 which provides for the Identification of draughtsman of plans, specifications, documents and diagrams to the extent that “plans… shall provide for the physical access to the proposed building to persons of different categories of disabilities.”
• Section 3 of the Education Act 1995 provides for Access to education of children with disabilities;
• Section 5(1) and (2) of the Local Government Act of 1997 which for Powers of the Local Authority;
• Criminal Procedure and Evidence (Amendment) Act 2000 has some protection clauses under non-bailable offences;
• Section 3 of the National Assembly (Amendment) Act 2001 provides for Disability, gender and Youth, in that PWDs should participate in politics for development;
• Section 15(1) and (2) of the Sexual Offences Act 2003 provides for sexual offences against disabled persons;
• Clause 12 of the Children’s Protection and Welfare Bill 2005 provides for the protection of children with Disabilities.These documents generally prohibit discrimination in areas such as:
• Employment opportunities;
• Public accommodations (museums, theatres, malls, grocery stores, doctors offices, schools, hotels, restaurants, etc.);
• Social activities at both central and local government;
• Transportation;
• Telecommunications and so on.With the advancement of the Socio-political model for the first time, national and international legal structures recognized that people with disabilities are also worthy citizens, regardless of which disability they have. The model acknowledges that everyone citizen has equal rights in society and no one deserves to experience discrimination based on biological impairments. This attitude is a predisposition to a major shift in public policy regarding the promotion and protection of the rights of people with disabilities. The discrimination based on biological or medically diagnosed impairment was recognized as root cause for the isolation, segregation and second-class citizenship of PWDs. The shift marked a significant shift in the way the society looks at biological impairments. The burden of impairment shifted from the individual to the society. Referring back to those steps, mentioned above, the model recognises, inter alia, that people with disabilities have as a civil right, the right to enter a building, to work, and do not deserve to be discriminated against by environmental barriers.
Future Directions for the Independent Living Centre - Lesotho
The current situation analysis shows that there are a number of stakeholders trying to address disability issues in Lesotho. Their efforts are aimed at ensuring that persons with disabilities can lead decent lives. These stakeholders face various challenges. The institutional arrangements for dealing with issues of disability need to be examined to ensure capacity building and effective utilisation of the scarce resources.One of the weaknesses of the country’s institutional set-up has for a long time been the absence of a national policy that clearly sets up the vision for provision of services within and outside the disability sector. This has resulted in the lack of sound direction for all stakeholders. Thus, the development of the up-coming National Policy referred to above, is a milestone in government’s efforts to mainstream disability issues. An Act of Parliament to provide the legal basis for this Policy would be significant in effectively addressing the issues and problems that affect persons with disabilities.
The situation analysis of the status of persons with disabilities that lead to the formulation of this policy helped to identify challenges and key policy areas to be followed up by appropriate programmes. The identified policy areas include disability prevention, early identification and intervention; rehabilitation; accessibility (which includes access to physical environment, transport, information and communication); Capacity building (which includes: education and training and economic empowerment); quality and essential healthcare (including HIV/AIDS); social protection (including social welfare and Housing); self representation and participation; sports, recreation and entertainment; research and appropriate technology; and legal protection of PWDs. The need for capacity building and wide public education is also highlighted. The policy has developed objectives and strategies for each of these areas.
As a follow-up to the policy formulation process, the Independent Living Centre has been established in order to enhance the quality of access to information and advice on services for PWDs in the country. During the life of its current strategic plan (2007-2011) there will be particular emphasis on providing services to the rural communities. ILC Lesotho intends to establish a mobile service that will continue to visit all districts of the country at least once a year and the ILEP and CTS teams will coordinate with the Options Coordination Services to improve the access of rural community clients to ILC services.
The staff of the Independent Living Centre will be given more opportunities to expand their skills and expertise with a more systematic staff development program, included as part of staff meetings. A whole of agency staff development plan, which will be based on the outcomes of the staff performance management system, will be developed. Staff will be linked to overseas opportunities, by being encouraged to register as volunteers with Business Volunteers Abroad. ILC Lesotho is ensuring there is greater understanding of the Disability Services as well as the training opportunities that may be available for Lesotho organisations in overseas countries.
The Independent Living Equipment Program (ILEP) has been streamlined so that the path for clients is simpler and the relative priority of need can be ascertained. The Independent Living Centre believes that the new system works very well but requires more recurrent funding to match the growing needs of the community. ILC Lesotho recognises that there are limited allied health services available to people living with disabilities. The Centre will work collaboratively with other agencies in the disability sector to ensure adequate availability of allied health services.
The ILC Lesotho Board of Directors will continue to monitor and improve its own performance and the performance of the Executive Director so that the Independent Living Centre remains a highly successful, dynamic and client focussed organisation, in accordance with the philosophical foundation of consumer choice and control, independence, personal autonomy, self-direction, barrier-free environments, non-dependency services, and consumer leadership.
Development Areas
• Seeking adequate recurrent funding for the ILEP program
• Providing a broader range and more coordinated training and development programs for individuals and outside organisations
• Collaborating with other disability and health agencies to expand the availability and coordination of allied therapy services
• Working with the disability sector to improve the range and quality of assistive technology available to the Lesotho community
• developing an outreach service to the rural communities of Lesotho
• Developing local and overseas opportunities for ILC staff and for the Lesotho disability sector as a whole
• Establishing a research demonstration, dissemination, and utilisation centre, the Technology & Research Information Centre (TRIC)Conclusion
The mission of ILC Lesotho is, henceforth, to enhance the power of people with disabilities and/or their families especially those who are either infected or affected by the HIV/AIDS pandemic, to be independent and safe, to make their own informed choices, through increasing access to information, therapy services and to life opportunities. ILC Lesotho’s ultimate vision, therefore, is to ensure that people with disabilities have access to information, advice and provision of appropriate therapy, technology and design to enhance daily living.
Values
We value our clients
• by ensuring easy and equitable access to information and services
• by providing effective and responsive services
• by respecting our clients’ dignity, valuing their opinions and participation
• by developing flexible systems to support clients, carers and their safety
We value our staff
• by ensuring their safety
• by providing excellence in leadership and management
• by facilitating their growth and professional development
• by respecting their individual and family responsibilities
• by providing flexible work arrangements
We value our relationships and partnerships
• by committing ourselves to developing collaborative relationships with other agencies and groups
• by communicating information and concerns
We value prudent management
• by maximising the potential of our available resources