Category Archives: Spinal Cord Injury Articles

Informative medical information on spinal cord injury hospitalization, wheelchair life, and living with a disability from people who have been there.

3D Wheelchair Art Modeling

3D Wheelchair Model Animation

Creating 3D wheelchair model animation is easy with so many user friendly programs available these days. You no longer need a degree in kinetics to easily create realistic animations. I explained how to set up some simple 3D wheelchair models previously using free 3D software Daz3D. Now here are a few 3D wheelchair model animations I put together. One of the options in the Daz3D 4.6 free version is export as an AVI movie. I then simply rip to GIF format to be cross browser friendly and post here.

The 3D wheelchair model animation below is a short endless loop of 50 frames. Our female model Susan in sports gear is walking beside our male model Michael in a Flex wheelchair on a warm sunny day.

3D Wheelchair Model Animation Walking

3D Wheelchair Model Animation

This second 3D wheelchair model animation is sexy Susan in a bikini on roller blades pushing a shirtless Michael in his Flex wheelchair. This one is an 80 frame loop. Sometimes it’s the simple things that make it look most realistic, like Susan’s hair blowing, and Michael’s head bob on each push. Did I over do her boobs lol? The scene in the background is a single image making the rendering process (saving as video) faster.

3D Wheelchair Animation Roller Blades

Wheelchair Model Animation of sexy bikini girl jiggle on roller blades pushing guy in flex wheelchair

Once you get the basic movement right there are many easy to apply options; skin color, hair type, clothing, body type, muscle size, plus lighting effects, endless camera angles, and so on that all conform or magnetize to your base 3D wheelchair model animation. I created the above short animation simply by making a few changes to the first countryside one.

3D Wheelchair Animation

Bookmark this page and have a go at making your own 3D wheelchair animation. I’m here to help and happy to post any of your creative works on a page of your own.

wheelchair provision 01

Policy and Planning for Wheelchair Provision

 
Policy and Planning to Implement Sustainable Wheelchair Provision 
concludes our five part series on wheelchair provision in less resourced settings brought to you with permission from the World Health Organisation. In this article we cover the following policy and planning guidelines;

  • present key activities for the planning and implementation of wheelchair provision
  • suggest strategies for costing and financing wheelchair provision
  • suggest links between wheelchair services and other sectors

Testimonial from a user in the Philippines

wheelchair provision 01Michelle lives on the rural island of Masbate, a remote area of the Philippines. She is 20 years old, and was born without legs and with on one arm. Unable to propel a standard wheelchair, Michelle has lived without one for most of her life. For mobility she has had to “walk” with one arm and her torso. In 2005, Michelle was referred by community workers to a wheelchair service operated by an international nongovernmental organization.

The service team saw that for a wheelchair to be useful to Michelle, it would need to be operable by one arm, be suitable for rough surfaces, and be easily portable on public transport for travel into town. A local wheelchair factory that operates in partnership with the wheelchair service team was able to create a wheelchair to these specifications.

Michelle is now able to propel herself in her wheelchair, and no longer has to move herself along at ground level. She uses the wheelchair to attend church, make social visits and play basketball. Most importantly, Michelle, who has a keen entrepreneurial spirit, aims to improve the economic well-being of her family. With improved mobility, her opportunities for this are greater.

5.0 Purpose and Outputs

The purpose of the policy and planning guidelines is to develop and implement policies for cost effective and sustainable wheelchair provision. Implementation of these guidelines will lead to:

  • develop a national wheelchair policy
  • plan wheelchair provision programs at national level in collaboration with all stakeholders, based on identified needs
  • integrate wheelchair services into existing health and rehabilitation services
  • develop national standards for wheelchair provision
  • calculate costs and establish sources of funding
  • link wheelchair provision with existing sectors and institutions in society

Stakeholders and Resources

Stakeholders involved in policy and planning include policy-makers, planners and implementers, manufacturers and suppliers of wheelchairs, providers of wheelchair services, disabled people’s organizations and users.

5.2 Policy

Developing a Policy

A national policy on wheelchair provision can ensure that users receive wheelchairs that meet minimum requirements for safety, strength and durability and that are appropriate for their individual needs. A national policy can also ensure that wheelchairs are provided by trained personnel who know how to properly assess users’ needs and how to train users and caregivers on how to use and care for the wheelchairs.

When developing a national policy it is recommended that the following relevant areas are considered; 

  • issues addressed by relevant international policies
  • design, supply, service delivery, training and user involvement
  • funding
  • links with other sectors

To avoid a separate policy for wheelchair provision, wheelchairs can be included in a general policy for provision of assistive devices. However, specific issues related to wheelchair provision may need to be addressed in additional policy documents.

International Policies

The two main international policy instruments related to wheelchair provision are: 

  • the Convention on the Rights of Persons with Disabilities; and
  • the Standard Rules on the Equalization of Opportunities for Persons with Disabilities

The Convention

The Convention on the Rights of Persons with Disabilities consists of 50 articles. Articles 4, 20, 26 and 32 are particularly applicable to wheelchair provision as follows;

Article 4. General obligations

1. States Parties undertake to ensure and promote the full realization of all human rights and fundamental freedoms for all persons with disabilities without discrimination of any kind on the basis of disability. To this end, States Parties undertake:

(a) To adopt all appropriate legislative, administrative and other measures for the implementation of the rights recognized in the present Convention;

(g) To undertake or promote research and development of, and to promote the availability and use of new technologies, including information and communications technologies, mobility aids, devices and assistive technologies, suitable for persons with disabilities, giving priority to technologies at an affordable cost;

(h) To provide accessible information to persons with disabilities about mobility aids, devices and assistive technologies, including new technologies, as well as other forms of assistance, support services and facilities;

(i) To promote the training of professionals and personnel working with persons with disabilities in the rights recognized in this Convention so as to better provide the assistance and services guaranteed by those rights.

Article 20. Personal mobility

States Parties shall take effective measures to ensure personal mobility with the greatest possible independence for persons with disabilities, including by:

(a) Facilitating the personal mobility of persons with disabilities in the manner and at the time of their choice, and at affordable cost;

(b) Facilitating access by persons with disabilities to quality mobility aids, devices, assistive technologies and forms of live assistance and intermediaries, including by making them available at affordable cost;

(c) Providing training in mobility skills to persons with disabilities and to specialist personnel working with persons with disabilities;

(d) Encouraging entities that produce mobility aids, devices and assistive technologies to take into account all aspects of mobility for persons with disabilities.

Article 26. Habilitation and rehabilitation

3. States Parties shall promote the availability, knowledge and use of assistive devices and technologies, designed for persons with disabilities, as they relate to habilitation and rehabilitation.

Article 32. International cooperation

1. States Parties recognize the importance of international cooperation and its promotion, in support of national efforts for the realization of the purpose and objectives of the present Convention, and will undertake appropriate and effective measures in this regard, between and among States and, as appropriate, in partnership with relevant international and regional organizations and civil society, in particular organizations of persons with disabilities. Such measures could include, inter alia:

(b) Facilitating and supporting capacity-building, including through the exchange and sharing of information, experiences, training programs and best practices;

(d) Providing, as appropriate, technical and economic assistance, including by facilitating access to and sharing of accessible and assistive technologies, and through the transfer of technologies.

The Standard Rules

The Standard Rules on the Equalization of Opportunities for Persons with Disabilities consists of 22 rules. With regard to preconditions for equal participation, Rules 3 and 4 apply to wheelchair provision. With regard to implementation measures, Rules 14, 19 and 20 are applicable.

Rule 3. Rehabilitation

“States should ensure the provision of rehabilitation services to people with disabilities in order for them to reach and sustain their optimum level of independence and functioning.”

Rule 4. Support services

“States should ensure the development and supply of support services, including assistive devices for people with disabilities, to assist them to increase their level of independence in their daily living and to exercise their rights.”

Rule 14. Policy-making and planning

“States will ensure that disability aspects are included in all relevant policy-making and national planning.”

Rule 19. Staff training

“States are responsible for ensuring the adequate training of personnel, at all levels, involved in the planning and provision of programs and services concerning people with disabilities.”

Rule 20. Monitoring and evaluation

“States are responsible for continuous monitoring and evaluation of the implementation of national programs and services concerning the equalization of opportunities for people with disabilities.”

Both the Convention and the Standard Rules clearly state that the government has the primary responsibility for wheelchair provision. It is therefore recommended that wheelchair provision be an integral part of national strategies.

Article 32. International cooperation

1. States Parties recognize the importance of international cooperation and its promotion, in support of national efforts for the realization of the purpose and objectives of the present Convention, and will undertake appropriate and effective measures in this regard, between and among States and, as appropriate, in partnership with relevant international and regional organizations and civil society, in particular organizations of persons with disabilities. Such measures could include, inter alia:

(b) Facilitating and supporting capacity-building, including through the exchange and sharing of information, experiences, training programs and best practices.

(d) Providing, as appropriate, technical and economic assistance, including by facilitating access to and sharing of accessible and assistive technologies, and through the transfer of technologies.

Specific wheelchair provision issues

There are five areas to be considered when developing a policy for basic wheelchair provision.

1. Design: Each person has a unique set of individual or environmental needs that dictate the wheelchair design that is best for him or her. Because user needs are so diverse, no single wheelchair design will be appropriate for all users under all conditions. It is recommended that policies:

  • require that several types of wheelchair be made available to service providers to ensure that each user receives a wheelchair that meets his or her needs; and,
  • specify minimum national requirements to ensure that wheelchairs will be safe, durable and locally maintainable.

2. Production and supply: Wheelchairs can be produced and acquired in a number of ways. They should be tested for strength, durability and suitability for the context in which they will be used. Decisions will need to be made on how wheelchairs will be produced and acquired. It is recommended that policies:

  • approach the overall need for wheelchairs in relation to the funding available, the sustainability of supply over time, local economic development, and the impact on the local wheelchair provision infrastructure;
  • encourage assessment of wheelchairs against minimum guidelines;
  • encourage participation of users and service providers in the selection of wheelchairs; and,
  •  take into account other national policies on related issues, such as support of local production and local employment.

3. Service delivery: Providers of wheelchair services play an important role in liaising between the users and the wheelchair manufacturers. They can ensure that individual users are provided with an appropriate wheelchair. They provide education and training about the user’s needs, as well as ongoing support and referral to other services. It is recommended that policies:

  • promote user empowerment and choice;
  • require that wheelchairs be provided through a proper wheelchair service delivery system;
  • require that all wheelchair service providers follow recommended practices regarding of wheelchair availability, prescription, fitting, training of users and follow-up services; and,
  • require wheelchair service providers to demonstrate transparency, fair pricing, and monitoring and evaluation of their services.

4. Training: Training of all personnel involved in wheelchair provision ensures that service delivery can be maintained at a nationally accepted level. It is recommended that policies:

  • encourage that training be made available for all individuals directly associated with the development and implementation of wheelchair provision, including those involved in design, production, testing and service delivery.

5. Financing: Each of these four areas of basic wheelchair provision requires funding. Different funding strategies are described in Section 5.4. Typically, the costs of designing, producing and supplying a wheelchair, the delivery of wheelchair services and training of personnel are included in the price of the provided wheelchair, unless the costs are covered in other ways. It is recommended that policies:

  • specify funding mechanisms;
  • set eligibility criteria for funding;
  • specify the categories and standards of wheelchairs and services that are funded under the scheme; and
  • promote user empowerment and choice.

Other policy support mechanisim governments could consider

  • waiving import duties on raw materials used to build wheelchairs;
  • waiving import duties on wheelchairs if they are not available in the country;
  • supporting local nongovernmental and disabled people’s organizations that provide wheelchairs and related services through direct grants, or by facilitating relationships between local and international nongovernmental organizations, business communities and other stakeholders;
  • supporting private wheelchair manufacturing businesses through competitive tender offers, loans and training grants;
  • promoting the participation of users at every level of service planning and implementation;
  • removing architectural barriers to increased mobility, independence and participation, thus stimulating interest in, use of and demand for better wheelchairs; and
  • including wheelchair provision and allied issues (such as accessible environments and accessible transport) in other national policies.

Example of a policy in India related to wheelchair provision

In India, the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act (2) was adopted in 1995 as a result of continual lobbying by disability activists and nongovernmental organizations. This lobbying involved extensive consultations with officials, protest marches and press conferences (3). Regarding wheelchairs, the Act states in Chapter VII: “The appropriate Governments shall by notification make schemes to provide aids and appliances to persons with disabilities.”

On the basis of this Act, the Indian Government introduced the Assistance to Disabled Persons of India scheme, under which people with a monthly income of less than US$ 160 can get a wheelchair free of charge. If the monthly income is between US$ 161 and US$ 250 the user has to pay 50% of the cost, and if the income is above US$ 250, the user has to pay the full cost of the wheelchair.

Example of a policy in Afghanistan related to wheelchair provision

In October 2003, the Ministry of Martyrs and Disabled in Afghanistan published a Comprehensive National Disability Policy. The policy was “developed in collaborative manner by all stakeholders including primarily disabled people organizations and self help groups; disability NGOs both national and international; major line ministries including Ministry of Education, Ministry of Public Health, Ministry of Labor and Social Affairs, Ministry of Women Affairs, and Ministry of Martyrs and Disabled (MMD); related UN agencies including UNOPS/CDAP, WHO, ILO, UNICEF, and UNHCR; National Constitution Commission; and President Office” (4). It is expected that the initial policy will lead to a more detailed and prioritized plan of action that needs to be developed in order to achieve the ultimate objectives of this policy. The policy goes on to state:

Provisions for people with physical disability for example, should include orthopedic rehabilitation centers; physiotherapy services; and orthopedic, assistive and mobility devices. These services should be close to a regional or provincial hospital with orthopedic surgical services so that the local population has easy access. They could be located ideally, in cities with medical teaching faculties such as in Kabul, Mazar, Herat, Kandahar and Jalalabad. Future services should provide for an expansion in orthotics as this is underserved.

All patients have the right to receive devices. Devices should be well-made, well-fitting, of local materials whenever possible and repairable locally. Appropriate technology should be standardized throughout the country. A mechanism for national standardization should be created with relevant experts in collaboration with MOPH [the Ministry of Public Health].

5.3 Planning

There are six key activities in planning and implementing wheelchair provision.

1. Identifying the need for wheelchairs and services

Identifying the need for wheelchairs is necessary to determine the numbers of services and personnel required and where to locate services. Such assessments also provide information on user satisfaction with wheelchairs that are in use and may have been distributed with or without service provision. Statistics should include the number of users, prevalence of different health conditions, impairments and restrictions in participation, and the geographical location of these individuals. Collection of data can often be facilitated by collaborating with community-based rehabilitation programs and disabled people’s organizations. Where collection of data is not possible, the conservative estimate that 1% of the population will require wheelchairs can be used.

2. Planning wheelchair provision at national level

It is recommended that governments be actively engaged in the planning, establishment and continuing development of wheelchair services. Governments are advised to consider funding wheelchair services along with other rehabilitation services. Where government funding is already allocated to wheelchair provision, it is recommended that the services be assessed to determine whether they are being provided in accordance with the recommendations made in these guidelines.

3. Encouraging collaboration between governmental and nongovernmental service providers

Wherever possible, national and international nongovernmental organizations involved in wheelchair provision are encouraged to collaborate closely with relevant ministries and departments to assist in developing and implementing the national plan for wheelchair provision. A coordinated plan can help to make maximum use of resources and ensure that the appropriate services are accessible to those who need them.

4. Integrating wheelchair services into existing rehabilitation services

Wheelchair services will be enhanced by integrating them into other rehabilitation and health care services where possible. Integration helps to coordinate efforts among key stakeholders, make the best use of resources such as health centres and personnel, and facilitate strong referral and consulting networks. A good example is that of the Kilimanjaro Christian Medical Centre, where a multidisciplinary group of medical professionals have established a wheelchair committee to address issues related to production, service delivery, distribution and maintenance (6).

Referral networks are critical to the sustainability of wheelchair services, and help to ensure that the services are accessible to those who need them. Consulting networks and access to health care professionals such as physicians, occupational therapists, physiotherapists, speech and language therapists and other specialists help to ensure that appropriate services and equipment are provided to users. This is particularly important for those with complex needs.

5. Adopting national standards of wheelchair provision

National authorities and providers of wheelchair services are urged to develop and adopt national standards. National standards need to address issues associated with the quality and testing of wheelchairs, personnel training and service delivery. These guidelines may serve as a starting point for developing standards. It is also recommended that monitoring and evaluation be carried out to ensure wheelchair services meet the established standards.

6. Empowering consumers

National governments and international development agencies can create and support an enabling environment. Users need to have the opportunity to choose the right product for themselves from among a variety of products. A good information package about these products, including possible sources of funding or subsidy, could be very useful for the user in making the right decision.

The best strategy for developing a national wheelchair provision programme will depend on the current state of wheelchair services in the country, the available resources and the needs the service has to meet. It is useful to consider the following questions when planning wheelchair provision.

  • What are the characteristics and specific needs of the user population?
  • Do stakeholder groups exist and, if so, what are their interests and opinions?
  • Do wheelchair services already exist (through local workshops, community-based rehabilitation, disabled people’s organizations, other nongovernmental organizations, the private sector or government)?
  • Is there any wheelchair provision outside the formal infrastructure, for example provision of mass imported wheelchairs?
  • What can be done with existing resources?
  • What are the current funding mechanisms?

Strategies for Developing a Wheelchair Provision Programme

  1. The government wants to establish a national wheelchair service programme. The government may contact interested nongovernmental and disabled people’s organizations, users, training  programs for health professionals, international organizations such as WHO and the International Society for Prosthetics and Orthotics and relevant international nongovernmental organizations to help in developing an appropriate plan for a national wheelchair service. The government may look at its own prosthetic and orthotic services and use these as a basis for developing a wheelchair service. It may also contact government bodies in other countries to learn from their experience and seek advice.
     
  2. Wheelchair provision exists but on a small scale through independent organizations; there is no collaboration. The government, local organizations or an international nongovernmental organization could assess the possibility of scaling up the operation. A resource centre can be set up to involve people from the different organizations in a collaborative effort. The resource centre can then evolve into either a coalition of organizations interested in wheelchair services or an independent nongovernmental organization in its own right.
     
  3. There are organizations in the country but no wheelchair service delivery. An interested nongovernmental or disabled people’s organization can serve as the nucleus for a resource centre. The organization needs to identify an appropriate organization with wheelchair provision experience as a partner (e.g. a governmental or nongovernmental organization in a neighbouring country or an international nongovernmental organization) and should follow the other initial steps in scenario 4 below. Alternatively, this process may be started by an international nongovernmental organization, which then seeks out local nongovernmental and disabled people’s organizations as partners. Efforts should be made to identify and network with other countries or organizations that have had similar experience in initiating wheelchair services.
     
  4. There are no organizations in the country and no regular wheelchair service delivery. An international nongovernmental organization, either on its own initiative or at the invitation of or in partnership with the government, could establish a resource centre in the capital or other major city. The resource centre could be an integral part of an already existing rehabilitation institute. The resource centre should begin by providing important information to users, their families or caregivers and health professionals about mobility needs and wider issues pertaining to mobility. The international nongovernmental organization should develop a stakeholder analysis and survey people who use or require wheelchairs, in order to identify gaps and determine the need for wheelchairs and services. Preliminary participatory research will present options for meeting the needs. Funding should be secured to begin wheelchair provision. Efforts should be made to establish a working relationship between the resource centre and relevant governmental bodies as a first step in establishing a national wheelchair service.
     

5.4 Funding Stratagies

An important part of setting up a wheelchair service comprises costing and establishing sources of funding in order to ensure the financial sustainability of the service.

Costing

 The first step towards financial sustainability is the accurate calculation of the direct and indirect costs of wheelchair services. It is important that the cost of service delivery and the cost of the product are accounted for. Initial costs of setting up a wheelchair service should also be provided for but do not need to be included in the calculation of running costs. When estimating funds needed to establish and sustain wheelchair services, planners are advised to consider the total cost of wheelchair provision. The total cost is the sum of all direct and indirect costs.

Direct Costs

Product

  • Manufacturing cost or purchase price of wheelchair
  • Shipping and transportation of wheelchair

Initial Service

  • Personnel costs (clinical, technical, training) for assessing, ordering, fitting and training
  • Personnel costs for ordering and inventory of wheelchairs
  • Materials and equipment for assembly and modifications
  • Supplies (assessment forms, record-keeping, etc.)

Follow-up service

  • Personnel costs
  • Maintenance and repair

Indirect  Costs

  • Management
  • Administration
  • Overheads
  • Capacity building – training of service personnel

Sources of Funding

Many individuals who need a wheelchair cannot afford to buy one. Nevertheless, everyone who needs a wheelchair is entitled to one, regardless of his or her ability to pay for it. Thus, funds will need to be made available to users needing financial assistance. Different funding mechanisms are described below.

Government Funding

Government funding is usually the most reliable funding source where the government is committed to wheelchair services. Where wheelchair services are being established or provided by nongovernmental groups, it is recommended that there be continued consultation with the relevant government departments. Consultation should include long-term planning to determine when, how and to what extent the government is able to assume overall responsibility for the service in the future, including financial contributions.

Donor Funding

In many contexts, the initiation of a wheelchair service may depend on funding from national and international donors. Owing to its usually short-term nature, donor funding should be complemented by advocacy for government and other more sustainable sources of funding.

Wheelchair Funds Managed by Committee

A local “wheelchair fund” may be established to subsidize the cost of wheelchairs for individual users. Wheelchair funds exist to source funding and equitably manage donations secured for wheelchair provision. Users apply to the fund committee for a full or partial subsidy of the cost of a wheelchair. It is recommended that such funds apply a means test to determine how much financial assistance should be given. Government funding may also be channelled through a wheelchair fund.

Committees should comprise a cross-section of individuals who have a vested interest in sustainable wheelchair provision, such as (though not limited to) users, representatives of disabled people’s organizations, clinicians and technicians, government representatives and local dignitaries.

Contributions From Users

Unless full government funding is provided for wheelchair purchase, it is recommended that any financing system incorporates an element of financial contribution from users themselves. Contribution  programs should be run in conjunction with individual means tests to ensure that users contribute no more and no less than they can realistically afford. Users’ contributions also stimulate demand for products and services of appropriate quality.

A credit scheme is an option that allows users to borrow funds to purchase a wheelchair and to repay it over a period of time. Another option is an employment scheme, linking wheelchair provision with the opportunity for the user to obtain a job or funds to start a business and to pay for the wheelchair over time.

Fees on Donated or Imported Wheelchairs

Even when a wheelchair is donated free of charge, there are costs associated with its responsible provision to the user, including follow-up with the user and maintenance of the wheelchair. Organizations that import wheelchairs on a large scale without ensuring the necessary services, as described in Chapter 3, could be required to pay a fee to support the services.

Income Generation

Wheelchair services can be subsidized through income from the sale of other products such as canes, crutches, walkers, and toilet and shower chairs.

Voucher System

A voucher system may enable users to make their own purchasing decisions. The user is assessed and receives a prescription for a wheelchair with certain features. The user is given a voucher to the value of the cheapest wheelchair that fits the user’s prescription and that also meets minimum standards for safety, strength and durability. Users who want a more expensive chair that meets the prescription have to find the additional funds themselves.
 

5.5 Links With Other Sectors

Wheelchair service stakeholders are encouraged to collaborate with other sectors and institutions. These linkages reduce the cost of establishing and operating a wheelchair service and allow the service to grow more rapidly. Professionals in these other sectors will learn about wheelchair services, while the services will benefit from the increased involvement of educated and trained professionals. Collaboration will also facilitate more enabling or barrier-free environments, and a higher level of inclusion and participation

Health services and community outreach campaigns

Existing health services provide an infrastructure into which wheelchair services can be integrated at the lowest possible cost. Information services can be expanded to include wheelchairs, thus facilitating the identification and follow-up of users. The advantages include a common location for all services, the use of existing referral networks, and greater awareness among health and rehabilitation workers. Visits by health services to outlying areas (for HIV/AIDS awareness, community-based rehabilitation  programs and vaccination campaigns, for example), as well as literacy, voter registration/political participation campaigns and any other outreach  programs, also provide an opportunity to provide wheelchair services.

Education

Linking wheelchair provision with the education sector can facilitate the development of training materials and implementation of training  programs. In some instances, core subjects may already exist within the academic institution. In these situations it may be possible to integrate training for wheelchair provision into existing courses.

Similarly, manufacturing and testing laboratories may exist, which can help facilitate the design, production and testing of wheelchairs. University students in a variety of technical and health disciplines can be recruited for careers in wheelchair provision. Service providers can engage students for field placements to obtain experience. Finally, academic institutions will be familiar with methods of accreditation, which may help in establishing nationally recognized, accredited training for wheelchair provision.

Wheelchair services can also work with the education sector to ensure education is accessible to people with disabilities, as stated in Article 9a of the United Nations Convention on the Rights of Persons with Disabilities. With a wheelchair and a barrier-free environment, a person with disability can access education in school or college. Schools and colleges need to have, as a minimum, easy access to classrooms, wide doorways and accessible toilets.

wheelchair provision 02Livelihood

It is likely that new wheelchair users will need help in finding a job or acquiring the necessary skills to find a job or return to work. Article 27 of the United Nations Convention states: Parties recognize the right of persons with disabilities to work, on an equal basis with others; this includes the right to the opportunity to gain a living by work freely chosen or accepted in a labour market and work environment that is open, inclusive and accessible to persons with disabilities.

Policies that encourage employment training, job referral  programs and mainstream education for people with disabilities can help to increase the employment opportunities for users. There are benefits for both users and society when users are able to secure their own livelihood. Through employment, users and their families can better secure the necessities of life and improve their economic and social situation.

wheelchair provision 03The Standard Rules on the “Equalization of Opportunities for Persons with Disabilities” notes that users have obligations as well as rights. With mobility, and a greater opportunity for work, users are in a better position to fulfil their obligations to society.

Social

Quality Of Life: With a wheelchair and a barrier-free environment, a person with disability can easily participate with dignity in social and community life. Active participation in the social, spiritual and cultural life of a community has a strong impact on the quality of users’ lives and their self-perception and self-esteem. Both participation in and appreciation of the arts, sports and recreational activities, can greatly contribute to a positive self-image and well-being.

wheelchair provision 04Active Participation: Barriers to participation of users include negative attitudes held by the public, the users’ families and sometimes the users themselves. An effective way of overcoming attitudinal barriers is for users to become more visible, demonstrating to family, friends and the broader public that they can participate in social activities (see Fig. 5.3.). Through direct experience, users and those around them learn the full extent of a user’s abilities. Users have the same rights and opportunities as others to have a family. In fact, a wheelchair makes family life easier and less stressful for a person with disability and his or her family.

Governments are encouraged to assist users in accessing wheelchairs and services that allow them to function as independently as possible. Users and their families also need to receive the social benefits to which they are entitled.

Infrastructure: Barrier-free environments create opportunities for users to exercise their rights, opportunities and freedoms, to become productive members of the family and to fulfil their duties to their family and community. The success and optimization of wheelchair provision in any country largely depend on the environment: a barrier-free environment will benefit not only wheelchair users but also others, especially older people. Basic aspects of the infrastructure that need to be accessible include:

  • buildings, i.e. housing and public buildings providing, for example, health services, education, employment, banking, government services and other public services;
  • public transport, such as buses, trains and ferries;
  • roads, streets and footpaths;
  • food, water and sanitation facilities such as open-air restaurants and markets, water taps, tube wells and toilets; and
  • facilities for culture and recreation, for example stadiums, cinemas, theatres, parks, public halls and community centres.

It is recommended that experts on wheelchair accessibility, for example users with adequate knowledge, be represented on local, regional and national committees that determine planning and construction. Universal design, including wheelchair access, could be included as a requirement in university  programs for civil engineering, architecture, urban planning and design.

Access for all in Sri Lanka

In Sri Lanka, a consortium of disability organizations was formed to support a campaign to promote the inclusion and participation of all people with disabilities in tsunami relief, reconstruction and development work. The Access for all campaign asks for the inclusion of people with disabilities when rebuilding the nation. This means rebuilding an accessible nation: making all public buildings, transport, places of employment, services and infrastructure accessible to all. It also means including people with disabilities in plans for the nation.
 

5.6 Inclusion and Participation

The ultimate aim of wheelchair provision is to facilitate inclusion and participation. Mobility is often a precondition for participation in society. Hence, provision of wheelchairs that enhance personal mobility is an essential element of interventions to ensure that all citizens of a country get equal opportunities to enjoy all human rights and fundamental freedoms.

Inclusion and participation of people using wheelchairs will require: 

  • barrier-free environments and disabled-friendly products and services;
  • general services and systems such as housing, health care, transportation, schools and income generating activities are made accessible; and
  • specific services and systems such as medical treatment, rehabilitation, wheelchairs and other assistive devices and support services are made accessible and affordable

It is important that all stakeholders in wheelchair provision are aware of and understand the ultimate aim of providing wheelchairs, and translate this understanding into appropriate action to ensure sustainable inclusion and participation. When the wheelchair needs of people in less-resourced settings begin to be met, this will benefit not only the individuals and their families but also their countries.
 

Conclusions

  • Countries have the primary responsibility for wheelchair provision, as stated in United Nations policy instruments.
  • Areas to consider when developing a policy for wheelchair provision include design, production and supply, service delivery, training and financing.
  • Key activities in planning and implementation wheelchair provision are:
    identification of need
    planning at national level
    collaboration among stakeholders
    integration of existing health care of rehabiliation services
    adoption of national standards
    emp0werment of users
  • Linking wheelchair provision to other sectors of the society can be effective.
  • Infrastructure and transport systems need to be accessible to all.
  • The ultimate aim of wheelchair provision is to facilitate inclusion and participation.
     

Resources

  1.  Scherer MJ. The change in emphasis from people to person: introduction to the special issue on assistive technology. Disability & Rehabilitation, 2002, 24:1–4.
  2. The Persons with Disabilities (Equal Opportunities, Protection of Rights & Full Participation) Act, 1995. New Delhi, Ministry of Social Justice and Empowerment, 1995 (http://socialjustice.nic.in/disabled/welcome.htm, accessed 11 March 2008).
  3. Wong-Hernandez l. Moving legislation into action: the examples of India & South Africa. Disability World, 2001, No. 6 (http://www.disabilityworld.org/01-02_01/gov/legislation.htm, accessed 11 March 2008).
  4. The Comprehensive National Disability Policy in Afghanistan. Kabul, Ministry of Martyrs and Disabled, 2003 (http://www.disability.gov.af/npad/publications.htm, accessed 11 March 2008).
  5. Oderud T et al. User satisfaction survey: an assessment study on wheelchairs in Tanzania. In: Report of a Consensus Conference on Wheelchairs for Developing Countries, Bangalore, India, 6–11 November 2006. Copenhagen, International Society for Prosthetics and Orthotics, 2007.
  6. Munish A. Follow-up, service and maintenance (including repairs and maintenance), sustainability of service, service delivery system. In: Report of a Consensus Conference on Wheelchairs for Developing Countries, Bangalore, India, 6–11 November 2006. Copenhagen, International Society for Prosthetics and Orthotics, 2007.
  7. Wiman R. et al. Meeting the needs of people with disabilities: new approaches in the health sector.Washington, DC,World Bank, 2002.

 

Changing Supra Pubic Catheters

Changing Supra Pubic Catheters

It is important to use a sterile technique when changing supra pubic catheters. It is also a good idea to watch a doctor or nurse perform a supra pubic catheter change before you attempt to do your first one. Check that the old and new catheters are the same size. Look for matching numbers eg: 18fr and that the catheter port ring colors match. A supra pubic catheter change of different sizes should only be performed in a hospital by qualified medical staff.

Why and how often to change a supra pubic catheter depends on the user and catheter type. Catheters are durable but they do not last forever. The longer a catheter is left in the more chance of infection, blockage, sticking and other problems. Depending on the type of catheter, they have a shelf life of several years and use life of one to three months max. Silicone Foley and silver coated catheters may be changed every 3 months. Check the catheter packaging for details.

Changing Supra Pubic Catheters Silicone Foley

NOTE: I take no responsibility for how you use or misuse these guides or any problems that may result from that use. Many have asked me things about changing supra pubic catheters. This is only my personal experience (and explanations). In an emergency such as a blocked catheter call an emergency service! In the event that is not possible and the situation is life threatening, here is a quick emergency 3 step guide to changing supra pubic catheters. You can do this in a seated position or laying flat. Please only attempt this if you have already called emergency services and you are really, really desperate.

3 Step Emergency Supra Pubic Catheter Change

  1. Plug a 10cc syringe onto the old catheter port and deflate the catheter balloon.
  2. Remove the old catheter and insert the new one as far in as the old one was.
  3. Plug the 10cc syringe onto the new catheter port and inflate the balloon.

I have had to do this and survived. Sterility comes second in an emergency. Your first supra pubic catheter change should be done by a doctor or a nurse six weeks after install.

10 Step Easy Safe Supra Pubic Catheter Change

Catheter Change Equipment:

  • Catheter change pack (often these include all below but the new catheter and drain bag).
  • Lubricant (to lessen the pain and ease the new catheter in).
  • New sterile catheter of appropriate size (to replace the old catheter).
  • New drainage bag (don’t plug a dirty drain bag onto a sterile catheter).
  • Pair of sterile gloves (to avoid infection).
  • Sterile saline or water (to inflate the catheter balloon).
  • Two 10cc syringes (one to deflate and one inflate the balloon).

Catheter Change Method:

Have the supra pubic catheter user take a big drink of water and lay face up. Thoroughly wash your hands and forearms, remove any dressing, and clean around the supra pubic catheter site. Prepare your workspace. Then take a deep breath and try to relax. We know it can be a daunting task. My mother has been changing supra pubic catheters for years. My beautiful Mum has done 100’s of catheter changes for me and still gets nervous every time I ask her too. I love you Mum.

Caution: When changing supra pubic catheters note how far the old one was inserted. This is where most people go wrong. I have bleed from the penis for days because a new catheter was pushed in to far. On two occasions at the hands of doctors who failed to make this vital observation. You can mark the old catheter with a pen or clip something onto it near the skins surface prior to removal if you wish.

  1. Using a sterile method open out your catheter change pack and check for or add; a new sterile catheter (open the packet dropping the catheter onto your sterile field), two 10cc syringes, sterile saline or water, a sterile lubricant and gloves.
  2. Wash your hands and forearms thoroughly and dry with a clean dry towel.
  3. Using a sterile technique put the gloves on.
  4. Open the lubricant and apply it liberally to the first two inches of the catheter tip (that is the pointy end where the eyelets are).
  5. Fill one 10cc syringe with 8cc of saline (or clean water) and plug it firmly onto the new catheter port (where the colored ring is, you may test inflate the balloon at this point if you wish, but don’t waste time).
  6. Plug the second empty 10cc syringe onto the old catheter port and draw back on it to deflate the balloon (it may have less than 8cc). Remove the catheter (you may feel some mild resistance. If you are sure the balloon is fully deflated, it’s alright to give it a little tug). 
  7. As you withdraw the old catheter it is VERY important to note how far in it was. Also note, your hands are now no longer sterile.
  8. Pick up the pre-lubricated catheter and insert it. Only push it in as far as the previous catheter was (if you insert it too far it may go into a ureter or the urethra).
  9. A little bleeding is common after changing supra pubic catheters. If some urine starts to flow it usually means you have the catheter in the correct position. Keep holding the catheter in position and slowly inflate the balloon with 8cc of sterile water. Once the syringe is empty unplug it from the catheter port.
  10. Attach a new clean drainage bag.

Congratulations you are done.

Tips on Changing Supra Pubic Catheters

  • A quick change is a good change.
  • Using a topical numbing gel around the catheter site prior to change to help ease pain.
  • Sterilize water by boiling and set aside until cool.
  • Do not leave a person alone after changing supra pubic catheters. Watch for any bleeding or adverse reactions.
  • A few blood clots in the tubing are common. If it lasts for more than a few hours something may be wrong.
  • Some bleeding is common after changing supra pubic catheters. If it lasts for more than an hour something is likely to be wrong.
  • Profuse bleeding at the site, in the tube, or from anywhere else is not common. If it lasts for more than five minutes something is terribly wrong. Call a doctor.
  • Check, and if needed top up the amount of fluid in a catheter balloon every four weeks.
  • Never leave a supra pubic catheter out for more than a few minutes.
  • Never cut a catheter trying to release it.

Resources

 

Silicone Foley Supra Pubic Catheters

Super Supra Pubic Catheters

I hear people say Super but it is Supra Pubic Catheter. I have had an SPC for 16 years now and it has mostly been super. There is not much first hand info on the net so I will share my personal experience. Supra pubic catheters are a method of bladder management. It is a fairly simple procedure usually performed under a general anesthetic.

An incision was made about three inches below the belly button and a small hole is poked in the bladder. At this point, a catheter is inserted. It is held inside the bladder by plugging a syringe onto the catheter port and inflating a 5 to 40cc balloon with sterile water. The syringe is unplugged and a drainage bag is connected to the catheter flange. Usually the site (incision point) is low enough to hide below your pants belt line. It took three weeks for my supra pubic catheters site to settle and stop bleeding. I no longer keep it covered with any type of dressing.

With supra pubic catheters you must always keep a catheter in place. Your bladder can heal very quickly. In as little as ten minutes without a catheter in, you may not be able to get one in. Your body treats a suprapubic catheter as a foreign object. Forming a tube from stomach wall to bladder. Always trying to expel the foreign object, the catheter site never totally heals. It will always require a little cleaning. We use an alcohol wipe each morning and night. I’d much rather my carer clean around the super pubic catheters site than the pointy end of business (I’ll call him Sarge). Especially when your primary carer is a family member.

Silicone Foley Super Supra Pubic Catheters

Silicone Foley Super Supra Pubic Catheters

Changing Supra Pubic Catheters

Silicone Foley supra pubic catheters like these above are good for three months. I change mine every two months. Even then it often requires a little tug to remove. Some rotate their supra pubic catheters frequently to keep them free from sticking. This can cause leakage so I don’t do it.

Sterilize all equipment and around the catheter site. Deflate the old catheter balloon by firmly plugging an empty 10 cc syringe onto the supra pubic catheters port and drawing back. Remove the catheter taking note of how far it was inserted. So then you will know how far to push the new one in. Lubricate and insert the new catheter, then inflate the balloon. It should slip back a little to rest against the bladder wall. Holding the syringe plunger depressed, remove it and plug a new clean drainage device onto catheter flange.

You might like to check our 10 step guide on changing supra pubic catheters.

We once pushed my catheter in to far, right through the bladder and half way out my urethra. When we inflated the balloon it ruptured my urethra. Sarge was wounded by friendly fire! I bled from the penis for three days. The same can happen if it’s not in far enough. A little bleeding is common after a change or trauma (yanking on the catheter) but any bleeding should stop quickly.

Plug a leg bag or whatever drainage receptacle you prefer. I use a 16fr gauge Silicone Foley catheter with a 4-Sure 2000 cc overnight drain bag in a cover slip hung up under my power wheelchair. The 4-Sure is emptied morning and night, changed weekly. The boys get jealous when we have a session at the pub. They run back and forth to the bathroom while I don’t need to go at all. Check and top up the amount of sterile water in the supra pubic catheters balloon monthly. Some osmosis can occur in time and you don’t want the catheter falling out when asleep.

Lifestyles Diet Flying Sex and Swimming

Drinking is essential with Supra Pubic Catheters. It’s recommended you drink at least 3 liters daily to keep sediment levels down and the catheter eyelets clear. A lower urinary pH can be of benefit in reducing sediment and bacteria causing UTI’s. Bacteria don’t like acidic urine. Some pH lowering drinks and those of general benefit to supra pubic catheters are; cranberry juice, coffee, naturally brewed beer, buttermilk, wine, green tea, colloidal silver, distilled and filtered water.

Diet is unrestricted. You can eat anything you like. Some foods that lower urinary pH and help to reduce urinary tract infection are; beef, berry juices, corn, corn silk, eggs, fermented milk products (yogurt), fish, fowl, goldenseal, grape seed extract, gravy, horsetail, marshmallow root, probiotics, sour cream and whole grains. Avoid processed foods and artificial sweeteners. Please keep in mind it is all about balance. A healthy pH range is between 6.5 and 8.0.

Flying is no problem though be aware silicone slightly expands at 20 000 ft. Some tell me they like to use a smaller gauge catheter on international flights. I have never tried this. I fear I would be soaked in pee before I even got on-board the plane. I have flown many times without making any changes to my daily use of SPC. I’ve been in gliders, stunt planes, across the country and on international flights. I’ve never had a problem. I do suggest reducing fluid intake. If you can’t, or the free booze is too tempting, ask the staff if you can pee in a bottle rather than trying to get to the bathroom.

Sex is the main reason I went for Super Pubic Catheters. How can I put this… Sarge is always battle ready, free to stand to attention at anytime. No having to fold an indwelling catheter back and cover with condom. No having to do a quick self catheter drain to prevent leaking pee during sex. I’m good to go anytime. Now I just need to find someone to have sex with! Haha. A friend tapes her supra pubic catheters down to her side during sex. It’s a good tip if you like it rough, your partner is worried about hurting you, or you or your partner are turned off by the sight of a suprapubic catheter. You can tape it down.

catheter-blockSwimming is not a problem. Disconnect your drainage device and press a stent (sterile cone shaped stopper, can use anything really) into the catheter and splash on in. Avoid drinking to much before and during swimming. If for some reason the urine cannot be drained via the suprapubic catheter you will usually bypass. The sphincter muscle which controls urination can only hold so much pressure before it will leak and you go the old fashioned way. That is a good thing! While it is inconvenient at times it acts as a safety valve. When urine can’t escape it backs up into your kidneys and will nearly always cause kidney infections (renal sepsis can be life threatening).

Sleeping puts your bladder into a dormant state, yes it sleeps too. Sleep on your back, side or front as long as it doesn’t kink the suprapubic catheter or tubing. Having a large drink just prior to sleeping will help your urine remain clear overnight. Keep your tubing and drainage device lower than your bladder. I clip the tubing full of urine onto my bottom sheet so it can’t pull on my catheter. A quick look around this web site will show you, quadriplegia and supra pubic catheters don’t prevent me from living a happy full and active life.

Sediment and Urinary Tract Infection Prevention

You will never completely stop Urinary Tract Infections (UTI). Anytime you have broken skin you’re vulnerable to bad bacteria, especially when you have a suprapubic catheter pointing the way in. Good hygiene is very important. I suffer less than one UTI/yr. The only indicators are that my urine has a stronger odor and is darker in color. Other quadriplegics shake, shiver, sweat, suffer headaches, blotchy skin or possibly display autonomic dysreflexia symptoms. Females seem to be more prone to adverse reactions to UTI.

The latest research suggests drinking large amounts of water to flush the infection through works as fast as antibiotics. UTI can grow from sediment so keeping sediment levels down is paramount. Cranberry products, corn silk, naturally brewed beer, and wine are also good UTI preventatives (see Diet above for more). I have a few beers near everyday and haven’t needed anti-sediment medicines for a number of years now.

Infections at one time were so frequent we had to change my Super Pubic Catheter every two weeks. Bacteria grows on sediment and can build up blocking the catheter’s draining eyelet’s. We would perform a bladder washout daily. Taking a large 50cc syringe and sterile bottled water (or cooled boiled water) we would push the fluid in and out to “flush” the catheter. I don’t recommend frequent bladder wash-outs. It’s much better to cure the sediment and UTI problem.

The catheter insertion point (site) itself is also at risk of infection. If the super pubic catheters site becomes red, warm to touch, crusty, tingles, smells bad and/or is pusy you probably have a site infection. A doctor can take a swab to confirm. Keep hair trimmed back away from the site as it promotes bacteria. Exposure to the sun, saltwater baths, cleaning with an alcohol wipe morning and night, keeping it dry and with good air flow, will all help avoid site infections.

Silver is a highly effective antibacterial substance which can be applied to various types of catheters. Multiple studies have suggested that silicone urethral catheters coated with hydrogel and silver salts reduce the risk of developing bacteriuria. Specifically, silver alloy catheters (coated on both internal and external surfaces) were shown to provide a greater than 3x reduction in the development of catheter-associated bacteriuria over silver oxide (coated on the external surface only), silicone Foley, and standard laytex catheters respectively. Silver alloy catheters cost around $5 more than standard laytex catheters but if you find you are prone to urinary tract infections they are worth trialing.

UTI Medications and Drugs of Benefit

Hiprex tablets (Mandelamine) Urex or Ural the anti-infection drink can help. Hiprex is a pro-drug absorbed from the gut passing into the urine where it’s hydrolysed to formaldehyde. Formaldehyde causes the breakdown of proteins/sediment essential to bacteria. However this only occurs if urinary pH is less than 5.5 acidic which is considered an unhealthy level. It’s a big pill to swallow and tastes like horse piss but they work. They recommended twice daily but one every three days was enough for me.

You may like to try D-Mannose or Ethical Nutrients Urinary Tract Support (in Aus) and Probiotic supplements (see Diet above for more). Everybody produces sediment it’s just that “regular” people don’t notice it. Tell them to pee into a jar and wait 6 hours, they’ll see sediment.

With supra pubic catheters the bladder is constantly drained. Over time the bladder may contract or shrink (like any muscle does) frequently spasming. The condition is called an overactive bladder. Ditropan, Vesicare, Enablex and Detrol LA are bladder specific muscle relaxants. These are prescribed to help reduce spasm and shrinking. You can imagine how hard it would be to get a replacement catheter located correctly when your bladder is the size of a grape. Of course, please consult your doctor before taking any new medications.

Ceasing Use of Supra Pubic Catheters

No need to worry if supra pubic catheters are going to be the right type of bladder management for you. If for any reason you are unhappy with your SPC it is fully reversible. Just leave it out and resume your old method. Of course you must consult your doctor first. The last thing you want is a raging infection left trapped inside your body.

Basically you restrict fluid intake, remove the catheter, and cover the old site with a dressing. It is that simple. For best results we suggest you cease all activity for a few days to allow the site to heal. Keep the dressing clean. Also avoid showering and over-distending the bladder. Generally your bladder will seal itself off within 10-60 minutes. The suprapubic catheter site takes a few days to weeks to fully heal and will leave a small scar. Like I said however, please consult your doctor before you go leaving it out.

Kind Regards
Graham Streets
MSC Founder

Further Resources

  • Care Guide: How To Care For Your Supra Pubic Catheters
  • Queensland Health: What is a Suprapubic Catheter? PDF
  • Spinal Injury Center: Managing your bladder with a suprapubic catheter
  • Wikipedia: Suprapubic cystostomy
  • Library of Congress Cataloging-in-Publication Data. Spinal cord injury / editor, Thomas N. Bryce; associate editors, Naomi Betesh. Rehabilitation medicine quick reference.
  • I. Spinal Cord Wounds and injuries handbooks, manuals, etc. Bryce, Thomas N.
  • II. Series: Rehabilitation medicine quick reference. [DNLM]
  • III. Spinal Cord Injuries, rehabilitation handbooks: [WL 39 S757 2010] RD594.3.S6683 2010.
  • Maki DG, Tambyah PA. Engineering out the risk of infection with urinary catheters. Emerging Infectious Diseases. 2001; 7:342-347.
  • Karchmer TB, Giannetta ET, Muto CA, Strain BA, Farr BM. A randomized crossover study of silver-coated urinary catheters in hospitalized patients. Archives of Internal Medicine. 2000;160:3294-3298.
  • Saint S, Veenstra DL, Sullivan SD, Chenoweth C, Fendrick AM. The potential clinical and economic benefits of silver alloy urinary catheters in preventing urinary tract infection. Archives of Internal Medicine. 2000; 160:2670-2675.
  • Riley DK, Classen DC, Stevens LE, Burke JP. A large randomized clinical trial of a silver-impregnated urinary catheter: lack of efficacy and staphylococcal superinfection. The American Journal of Medicine. 1995;98:349-356.
  • Newton T, Still JM, Law E. A comparison of the effect of early insertion of standard latex and silver-impregnated latex Foley catheters on urinary tract infections in burn patients. Infection Control and Hospital Epidemiology. 2002;23:217-218.
  • Thomas L, Valainis G, Johnson J. A multi-site, cohort-matched trial of an anti infective urinary catheter. presented at Society for Healthcare Epidemiology of America (SHEA), April 7-9, 2002.
  • Leape LL, Berwick DM, Bates DW. What practices will most improve patient safety? Evidence-based medicine meets patient safety. JAMA. 2002;288:501-507.
  • Ahearn DG, Grace DT, Jennings MJ, Borazjani RN, Boles KJ, Rose LJ, Simmons RB, Ahanotu EN. Effects of Hydrogel/Silver Coatings on In Vitro Adhesion to Catheters of Bacteria Associated with Urinary Tract Infections. Current Microbiology. 2000;41:120-125.
  • Liedberg H. Catheter induced urethral inflammatory reaction and urinary tract infection. An experimental and clinical study. Scandinavian Journal of Urology and Nephrology. 1989;Suppl. 124. BARDEX System with Anti-Infective Foley Catheter ®I.C.® 49629_0304-25.qxd 12/28/06 2:13 PM Page 1
Bladder Washout Kit

Bladder Washout

A bladder washout is a technique used to flush blood clots or debris from the bladder by pushing water solution into the bladder and immediately draining.

Who Requires a Bladder Washout

You may need a bladder washout if:

  • You have a lot of sediment in your urine
  • You are unsure if your catheter is draining correctly
  • Your catheter has blocked and you have no replacemnent
  • You have been advised by your doctor or community nurse to do bladder washouts in the treatment of a specific urinary tract infection

Advantages of a Bladder Washout

  • If you are unable to drink large amounts of fluids to treat a urinary tract infection or heavy sediment this may be an alternative method
  • If your catheter repeatedly blocks off and you are unwilling or unable to do frequent catheter changes
  • Stretching the bladder frequently can help avoid shrinkage

Disadvantages of a Bladder Washout

  • Every time you disconnect a catheter from drainage bag you create an entry point for infection
  • You are introducing foreign fluid into your bladder
  • The procedure is time consuming
  • If not done carefully it can cause bleeding and blood clots
  • There is risk of damage to the epithelial lining of the bladder
  • Studies have shown it has little or no effect on most infections
  • Bladder washouts may induce autonomic dysreflexia in quadriplegics

Bladder Washout Equipment

  • 60ml plastic syringe
  • 2 clean plastic trays (ice cream containers or similar)
  • 500mls of sterile bottled water or treated tap water boiled and cooled to room temperature (not* bore water tank water or chlorhexidine)
  • Small supply of cotton wool balls
  • Alcohol wipes (or small amount of methylated spirits or sterilizer for swabbing the catheter connections only)
  • Clean bench area
Bladder Washout Kit

Bladder Washout Kit

Bladder Washout Procedure

If you experience pain at any time during the bladder washout procedure you should cease immediately and call a doctor or paramedic!

  1. Select a clean area where the procedure is to be carried out. (We suggest a bench area in the bathroom with a clean towel over the top of it).
  2. This procedure can either be carried out by the patient or their carer – the instructions are the same for both.
  3. Take the 500mls of prepared water and place within reach on the bench. Ensure the second container is alongside the first as this will be used for the used irrigation fluid and urine that is ‘washed out’ of the bladder during the procedure.
  4. Place the clean 60ml syringe alongside the containers on the prepared area. This is used to insert the water into the bladder.
  5. Place the cotton balls beside the container and have the methylated spirits within reach.
  6. Ensure the connection between the catheter and the drainage bag is exposed so you can get to it easily.
  7. Wash your hands thoroughly.
  8. Take a cotton ball soaked with methylated spirits and wipe the connection thoroughly. Dispose of the cotton ball.
  9. Carefully take the connection apart and rest the catheter end in the empty container.
  10. Fill the syringe with 60mls of water from the water container. Insert the syringe into the end of the catheter and gently insert the water by pressing on the plunger of the syringe. Do not withdraw any fluid through the catheter at this stage.
  11. Remove the syringe being careful to put the open catheter end into the empty container. You will notice that some of the urine/water will drain into the container.
  12. Fill the syringe again with 60mls of water and insert into the bladder. Once the syringe is completely empty withdraw 40mls of the mixture of urine/water into the syringe then discard into the drainage container. Again you will notice there is drainage of urine/water from the catheter into the drainage container.
  13. Repeat step 12 until all 500mls of water has been used.
  14. On completion take another cotton wool ball soaked with methylated spirits and wipe the catheter connection again before reconnecting to the drainage bag.
  15. Discard urine/water into the toilet and using a small amount of disinfectant clean out the container.
  16. Both containers should be kept covered and scalded out once a week with boiling water.

Care of Bladder Washout Equipment

You will need to make fresh milton solution each time you sterilise your bladder washout equipment before and after each procedure by doing the following;

  • Into your clean water container place 500mls of tap water and either ¼ milton tablet or 7mls of milton solution (you can use vinegar and clean water at a 1:10 ratio or gently boil the equipment for 5 minutes)
  • Once the solution has mixed place syringe with plunger removed from main barrel into this solution
  • Leave the syringe to soak in the solution for one hour
  • After one hour remove syringe and discard milton solution from container
  • Using a clean towel or disposable paper towel dry container and syringe and store syringe in sealed container

Resources

  • The Spinal Injuries Unit: Phone (07) 3240 2215 or (07) 3240 2641
  • The SIU Consultant on Call Through PAH switchboard (after hours)
  • Queensland Spinal Cord Injuries Service: www.health.qld.gov.au/qscis
wheelchair disability fetish woman

Disability Fetish and Medical Fetish

A fetish is like a spider web. A fetish means to have a sexual arousal to an object behavior or type of person. Simple enough, until you try to describe an individual’s fetish to someone. It is like trying to guide them to one particular span of a spider web, without pointing at it. Adding to the complexity many fetish can overlap each other. A person with a disability fetish may also have some parts of a medical fetish. We separate the two, explain them, and look at their differences.

I think most of us have been guilty of over using the term fetish at one time or another. Bragging about your favorite fishing rod does not mean you have a fishing rod fetish. While I have heard some of my friends describe their fishing rod as if it were an extension of their penis, in clinical terms it does not qualify as a fetish.

Disability Fetish

Abasiophilia is the medical term given to those who are sexually aroused by and attracted to disabled people. It may be a minor disability like missing fingers, or a profound one like blindness. Some of the most common disability fetish are a strong sexual attraction to amputee’s and paralyzed wheelchair users such as paraplegics and quadriplegics with a spinal cord injury.

wheelchair disability fetish woman

Wheelchair disability fetish woman with crutches and neck brace

The extreme form of disability fetish is a very strong desire to be disabled. So strong, a person with an extreme disability fetish may elect to have their legs broken, limbs amputated, or even paralyzed by having their spinal cord cut. These people are often called wheelchair wannabes, because they are attracted to and want to be in a wheelchair.

I know of one girl who loves wheelchairs so much she spent her first year of college living in one. At the end of the year she went to stand up out of the wheelchair and collapsed on the floor. By using a wheelchair for so long her leg muscles had wasted and they could no longer support her. She was quite happy about her new found disability.

Many find it hard to understand why any one would want to have a perfectly healthy limb amputated. I try to explain it this way. They do not find perfect people attractive. They see disabled as normal, and normal people as disabled. With an extreme atypical disability fetish they can feel very uncomfortable with a healthy limb. Only once that limb is disabled or removed do they feel good with it.

Less extreme disability fetish include the sexual arousal and attraction to disability equipment. The medical term for this is Paraphilia. By wearing leg braces, plaster casts, and using a wheelchair to feel disabled, they become sexually aroused. You may have heard of the term wheelchair pretender. Because wheelchair pretenders fake a disability for sexual arousal they are a much maligned group. Wheelchair pretenders are not seen in public very often. Please don’t go tipping people out of their wheelchair because you think they are faking it.

[nggtags gallery=disability-fetish]

A disability fetish does not have to be a love of a particular object. It can take many forms. Some feel a strong sexual attraction to the actual disabled person. In the case of spinal cord injury they are known as wheelchair devotees. With an attraction to wheelchair users, a wheelchair devotee often knows what life in a wheelchair is like. Therefore, they make good lovers and life partners to wheelchair users.

Very few real wheelchair users have a disability fetish. They only use a wheelchair because they have to. Most wheelchair users do have an interest in disability and medical devices but it is not a sexual attraction or arousal. Wheelchair users may also be attracted to other wheelchair users, but again it is not usually in a disability fetish, or love interest kind of way. They are simply interested in like-minded people.

Medical Fetish

An atypical medical fetish is a strong attraction to medical apparatus purely for erotic sexual gratification. People with an extreme medical fetish use torturous medical devices, speculum’s, mouth and anal spreaders, enema kits, probes etc. They may even consent to false operations where they are surgically opened, and with nothing fixed or removed, sutured closed. An extreme medical fetish can be a dangerous thing.

Medical fetish woman in wheelchair and neck brace

Medical fetish woman in wheelchair and neck brace

In recent clinical observations extreme medical fetish are being aligned with identity disorders and OCD (Obsessive Compulsive Disorders). OCD are an anxiety disorder in which people have unwanted and repeated thoughts, feelings, ideas, obsessions, or behaviors. They get a very strong compolsion to think or act a certain way. Often when it is acted on it results in self harm. For example, an obsession to wear a neck collar constantly will result in weak neck muscles causing all kinds of harmful problems. We do not condone self harm in any way.

Our featured model is sexually aroused by a skin tight rubber dress, wheelchair and stiff neck collar. It is not a case of extreme fetish or OCD. The restrictive elements are disability fetish. She likes the feeling of being disabled that they give. The apparatus that excite her, wheelchair and neck collar, are medical fetish. This is a prime example of how several fetish can overlap.

These less extreme medical fetish, the sexual arousal of wearing orthopedic leg braces (calipers), plaster casts, spinal braces, and wheelchairs are common. In such settings the wheelchair simply becomes a device to fuel erotic pleasure. The same way some people find a vibrator or lingerie sexually arousing. Some like the feel some like the look. For the most part these mild forms of medical fetish are harmless.

[nggtags gallery=medical-fetish]

A medical fetish can include a sexual attraction to medical people. Doctor and nurse porn movies, people receiving medical examinations and so on. Most are simply role play, and they are not very good actors at that. You know, the movies where the patient suddenly finds their spinal cord injury is cured by the sight of a half dressed doctor or nurse, and well… you can guess the rest. If it were only that easy I would be walking. These “actors” give doctor’s, nurses, wheelchair pretenders and real wheelchair users a bad name.

It is rare for a real wheelchair user with a spinal cord injury to have a disability fetish. They may be interested in medical apparatus, wheelchairs and mobility equipment. They may have a great appreciation for doctors and nurses. But seldom is it in a sexual medical fetish way. Just as some people with a spinal cord injury use an enema, it is not by choice, they consider it a chore. We don’t find probes sexy.

Conclusions

wheelchair fetish disability fetish medical fetish woman

Wheelchair fetish disability fetish medical fetish woman

Disability fetish are grossly mis-represented in the commercial sex industry. Gimp calendars and videos of amputees having sex are a poor representation of real life. In true atypical form a disability fetish is a sexual arousal to disability equipment or a desire to be disabled. A medical fetish can range from an attraction to wheelchairs to torturous medical devices. In the extreme a fetish can be harmful to your health.

Most disabled wheelchair users do not like to see wheelchair pretenders use a wheelchair to gain pity, sympathy, money, or special service. Neither does the general public. Wheelchair devotees are attracted to wheelchair users and so make good partners to them in love and life. However, not all wheelchair devotees have the best interests of wheelchair users in mind.

Resources

  1. All images used in this article are courtesy of Ultimate Psycho. Model; Lou Moon. You may not use or redistrubute any of the images that appear in this article without express written permission from the copyright holder; Ultimate Psycho.
  2. Blais MA, Smallwood P, Groves JE, Rivas-Vazquez RA. Personality and personality disorders. In: Stern TA, Rosenbaum JF, Fava M, Biederman J, Rauch SL, eds. Massachusetts General Hospital Comprehensive Clinical Psychiatry. 1st ed. Philadelphia, Pa: Mosby Elsevier; 2008:chap 39.
  3. Feinstein RE, Connelly JV. Personality disorders. In: Rakel RE, ed. Textbook of Family Medicine. 7th ed. Philadelphia, Pa: Saunders Elsevier;2007:chap 60.
  4. Koran LM, Hanna GL, Hollander E, Nestadt G, Simpson HB, et al. Practice guideline for the treatment of patients with obsessive-compulsive disorder. Am J Psychiatry. 2007;164:5-53. [PubMed: 17849776]

 Websites

whale watching redcliffe

Whale Watching From Redcliffe Wheelchair Friendly

Being a public event I invite you all to join us on our second wheelchair thill-seeking event for the year. We will be onboard the Eye-Spy for a relaxing whale watching cruise. Departing from the Redcliffe Jetty at 9:30 am on the 19th Aug 2011. Returning at 3:00 pm the same day. It is wheelchair friendly. Feel free to book your own tickets and join us.

Adults $135.00pp
$165.00pp $165.00pp
$185.00pp
Direct from Redcliffe
Ex Brisbane Hotel/CBD Transfer
Ex Sunshine CoastTransfer
Ex Gold CoastTransfer
Seniors* $125.00pp
$155.00pp $155.00pp
$175.00pp
Direct from Redcliffe
Ex Brisbane Hotel/CBD Transfer
Ex Sunshine CoastTransfer
Ex Gold CoastTransfer
Students $125.00pp
$155.00pp
$155.00pp
$175.00pp
Direct from Redcliffe
Ex Brisbane Hotel/CBD Transfer
Ex Sunshine CoastTransfer
Ex Gold CoastTransfer
Children* $95.00pp
$125.00pp $125.00pp
  $145.00pp
Direct from Redcliffe
Ex Brisbane Hotel/CBD Transfer
Ex Sunshine CoastTransfer
Ex Gold Coast Transfer
Family Pass $365.00pp
$455.00pp
  $455.00pp $515.00pp
(2A + 2C) Direct from Redcliffe
(2A + 2C) Ex Brisbane Hotel / CBD Transfer
(2A + 2C) Ex Sunshine Coast Transfer
(2A + 2C) Ex Gold Coast Transfer

*Children Price for ages 4-14yrs inclusive. (Infants 0 – 3 are welcome on board and are free of charge however they are not catered for.)

*Above prices are valid for Season 2009 June-November and subject to change without notice.

whale watching redcliffe

Whale watching onboard the Eye Spy Redcliffe

What are the tour times?

Tours operate daily* departing from Redcliffe Jetty with guests invited to board at 9.30am for a 10.00am departure, and returning between 2.30pm and 3.00pm. Hotel transfers from Brisbane, Gold Coast and Sunshine Coasts available should you require. *Weather permitting

How do I book a tour?

1. To make an immediate on-line booking using your credit card for payment, Book Now
2. Telephone bookings:
3. Email: info@brisbanewhalewatching.com.au
4. Fax: +61 (0)7 3880 1122

Do I need to book in advance?

Yes. There is a high demand for Brisbane Whale Watching Tours so we strongly recommend you book well in advance to avoid disappointment.

Am I guaranteed to see a whale?

Yes – we offer a complimentary cruise for you on the next available departure if you don’t sight any whales on your day of travel.

What will I see?

Each year from June through until early November, the mighty Southern humpback whales grace us with their beauty as they migrate through the crystal clear waters of South East Queensland. Each and every Brisbane Whale Watching’s tour is a unique experience and sightings vary from day to day. Whilst the humpback whales are the stars of the show, a typical tour may encounter pods of dolphins leaping and playing alongside our magnificent vessel as well as an array of other marine life.

What happens if the weather or sea conditions are not suitable?

Brisbane Whale Watching’s tours are always subject to sea conditions. Our team constantly monitors weather and respond professionally to any changes. Guest comfort and safety is always our priority. Should a cruise be cancelled due to tide and / or weather conditions, a seat on the next available cruise will be offered or a full refund will be given.

If my tour is cancelled, will I be transferred to the next one?

Yes, should a cruise be cancelled due to tide and / or weather conditions, a seat on the next available cruise will be offered or a full refund will be given.

How long is the tour?

The tour boards at 9.30am and returns to shore between 2.30pm and 3.00pm.

What should I wear on my Brisbane Whale Watch tour?

Dress warmly and wear flat shoes. If you wish to spend time on the outside decks of our vessel, you may like to wear a light waterproof wind-jacket.

What if I get seasick?

MV Eye-Spy has been purpose built to specifications to ensure maximum comfort for whale watching. However, should you if you are susceptible to motion or seasickness, natural active motion-sickness tablets are available on board.

Can I buy film on board MV Eye-Spy?

Yes – a licensed bar and souvenir counter is available on board, selling a range of goods such as film, confectionery, beverages and Brisbane Whale Watching merchandise.

Is there parking available?

Yes – there is an all day free car park located opposite the Redcliffe Police Station, just 100 metres north of the Redcliffe Jetty which is our departure point.

Wheelchair friendly?

Yes – please contact our friendly booking operators regarding tides.

Spinal pain treatments and relief

Chronic Pain After Spinal Cord Injury

We take asprin for headaches, broken bones heal in six weeks, ongoing chronic pain however is a never ending nightmare of doctors drugs and treatments that typically yield little success and soon daily life becomes consumed by pain. From getting groceries to attending Susie’s wedding, life decisions are based on levels of pain felt today or of those percieved in time. So how can we ease and free ourselves from chronic pain with minimal drugs and little effort.

Training in the field of psychology I’ve been studying chronic pain more lately and noticed how deeply it is entrenched in lives watching someone close to me battle the condition. The very deadline I set myself for this article passed due to my relative’s chronic pain and her resulting difficulties. Whether you use a wheelchair, have ambulatory difficulties, or have other physical issues, the odds are chronic pain will factor in life at some point.

Who Suffers Chronic Pain

Chronic Spinal Pain

Chronic Spinal Pain

In developed countries, almost 20% of the adult population is currently afflicted with persistent and/or recurrent pain. According to International Association for the Study of Pain (IASP), only 1-2% of that documented chronic pain is attributed to cancer. The majority of that chronic pain is attributed to neck, back, joint, and musculoskeletal disorders.

There’s little wonder why people with on-going, unrelenting pain seriously consider suicide as an alternative to suffering a life defined by pain.

Only recently has the study and appropriate treatment of pain become part of mainstream medical research. Pain study now encompasses interdisciplinary research by psychologists, clinical doctors, biochemists, and neurophysiologists, among other professions. The most recent research has found that the sensations caused by severe, ongoing pain can literally change the chemical mechanisms within the central nervous system. Neuronal changes occur and the brain becomes primed to perceive pain, even after the source of pain is removed.

Additionally, research had found that pain perception is perceived differently based on gender and ethnicity. Believed to be attributed to neurochemical responses, women appear to experience pain far more than men, and those of African descent show a greater tendency to experience chronic pain than whites. When comparing responses to analgesic treatment to chronic pain, particularly various forms of opioids, men and women can expect markedly different levels of relief.

What is Chronic Pain

Pain is defined in three medical stages:

  • 1. Acute pain lasts 30 days
  • 2. Subacute pain spans 30 to 90 days
  • 3. Pain that exceeds these time spans is classified as chronic pain.

Acute pain after any trauma or disease signals actual tissue damage as well as the potential for possible future tissue damage. Acute pain and chronic pain should be addressed and treated differently. The timing of pain treatment is another factor to consider, the longer someone experiences untreated pain, the longer it will take medical specialist to treat and hopefully remedy that pain.

Pain specialists note an individual experiencing severe pain treated within 60 to 80 days from onset, has a probability of becoming pain free near zero percent. If that same individual was treated within the first 30 to 60 days of onset, they would most likely have become pain free.

Economic Cost of Chronic Pain

Chronic pain left untreated or under treated drives the costs of health-care skyward in the form of visits to the emergency room, urgent care clinics, and predominantly extended stays in hospital. In the US alone, there are more than 50 million lost workdays related to persistent pain per year. Translated into cost for businesses $61.2 billion each year.

Cost Following Spinal Cord Injury

Chronic pain in persons with spinal cord injury (SCI) is a common and significant problem. Almost four out of five persons with SCI report chronic, persistent pain. Of that identified group, almost one-third report that chronic pain interferes with their daily activities and quality of life. In a separate study, over one third of participants with thoracic or lumbar SCI pain reported they were willing to trade recovery from their SCI for immediate pain relief.

Recent research has found that adequate pain relief around any spinal cord lesion early in treatment can help prevent later chronic pain. Correlations among those with incomplete spinal cord lesions where abnormal sensation exists near the initial lesion site treated for pain relative to the number who have gone on to suffer chronic pain later in life are also emerging in favor of early pain management.

Spinal pain treatments and relief

Spinal pain treatments and relief

In a survey by Spinal Universe back pain treatments reported as most successful were also the most simple to enact, weight loss, exercise and massage, and furthermore aligned with other studies they conclude prescription pain management is the most effective in treating chronic pain.

Pain Management Narcotics and Addiction

There are numerous things to consider in the discussion of pain: how pain is measured, the sources of chronic pain, how individuals rate their pain, the perceptions of doctors, and the need of the sufferers, to name a few. However, based on my most recent experiences, the most difficult component of pain care is pain management through pharmaceutical treatments. I have found the single greatest fear, among untrained physicians and their desperate suffering patients, is addiction to narcotic pain relievers.

Despite our expectations to the contrary, chronic pain management is not explored in detail in medical school, unless one is going to specialize. The popularly held misconceptions regarding opiates, their derivatives, and the newer non-opioid analgesics are one of the major reasons many suffer chronic pain needlessly. While studying psychology, my primary focus was substance abuse, a field which is complicated and filled with emotional issues.

There is a clear and well-defined line between an individual whose body has sustained trauma seeking pain relief and substance abuse. The concepts of addiction are complicated and fraught with different theories of addiction and treatment. To clearly examine the nomenclature of abuse and addiction to medicinal drugs intended to relieve pain we need to understand that profound differences exist between medical pain relief, substance abuse, and chemical dependence.

Spinal cord injury pain medications

Spinal cord injury pain medications

Substance abuse is defined as the use of drugs or any other chemical substance (legal or illegal) with some pattern of regularity, such as drinking to excess every weekend. Substance abusers are still able to maintain their life roles and responsibilities with some degree of competence. Monday is still a work day and the individual arrives on time, worn out and hung over, but still at work.

Chemically dependent individuals are, however, a completely different story. Chemically dependent individuals devote all their attention, emotions, and thoughts toward every aspect of their addicted life. A chemically dependent person chooses to forgo relationships with their family and friends; their primary relationship is with their drug of choice. Their life revolves around the drug, instead of enhancing quality of life, it consumes their life. It’s rare for a person who is adequately treated for chronic pain to display such behaviours.

While at times chronic pain may seem to overshadows everything in our lives, it is not by choice. When we seek treatment and care for chronic pain, we are entitled to the most appropriate medication possible, whether that is morphine or methadone. When we experience such profound chronic pain, the odds are very slim that we will become addicted to our medication. Unless there is a history of addiction in the family background, it is relatively safe to take powerful medications, strictly according to the prescriber’s orders.

Making changes and adjustments to narcotic pain medication is reckless and potentially life threatening, unless under the prescriber’s orders. If at any time you feel you have become dependent on pain medication consult your physician and ask they re-examine your prescriptions and drug regime.

Conclusions

Chronic pain is frustrating and exhausting. It hurts those who suffer from it and those who love and care for them. Chronic pain is a condition that is often extremely difficult to treat. It can take months or even years to find the right physician, the right treatment, and the right medication. Many find it difficult to stand up to a doctor and tell them we are capable of participating in the choice of our treatment, particularly if narcotics are part of the discussion.

We are all well within our rights to educate ourselves and subsequently advocate for ourselves or a loved one. We are all entitled to pain relief and an improvement in the quality of life. The consequences of inadequate chronic pain relief are potential greater harm than the consequences of addiction. The earlier a possible dependency is addressed the more effectively it can be dealt with. If you have concerns or questions about chronic pain, please contact your physician.

Resources

  • ABC of Spinal Cord Injury, 4th Edition; Grundy, David (ed). 2002, BMJ Books, London.
  • American Pain Foundation;  http://painfoundation.org
  • Encyclopedia of Disability; Albrecht, Gary L. (ed). 2006, Sage Publications, Thousand Oaks.
  • Fundamentals of Substance Abuse Practice;  Johnson, Jerry. 2004, Brooks/Cole-Thomson Learning, Belmont, CA.
  • Health.Com;  http://www.health.com
  • International Association for the Study of Pain; http://www.iasp-pain.org
     
NDIS SIA 6 Supporters

NDIS Six Reasons to Support a National Disability Insurance Scheme

Media Release: Powerful National Disability Insurance Scheme (NDIS) video demonstrates the daily disasters faced in the disability sector.

Graham Streets is one of six people to star in a YouTube campaign calling for the Federal Government to implement a National Disability Insurance Scheme (NDIS). The short video, titled Why the Spinal Injuries Association supports an NDIS, was released last week on YouTube.

In the YouTube campaign, Graham shares how his spinal cord injury has taken a life-long effect on his health. He now weighs just 45 kilograms.

People with permanent, physical disabilities in Australia are really struggling. There are not enough appropriate supports and services in place to allow people to get back into the community and contribute to society. At the moment I can only afford to have my carer help me out of bed in the morning and back into bed at night, so it’s pretty tough going for me during the day. I don’t get to have any lunch. — Graham Streets

Spinal Injuries Association CEO Mark Henley said as well as Graham’s story, the video also highlighted the challenges faced by four other members of the organisation and a member’s mother, who has been caring for her son for the past 35 years. These people also stated how an NDIS would improve their quality of life.

While many of our members and clients lead productive, fulfilling lives, too many are in crisis and it’s time for much-needed change. With the Productivity Commission handing down its final report into an NDIS on 31 July, we need as many people as possible to view our video and sign the online petition for an NDIS at www.spinal.com.au/ndis. People power can really make a difference – it could transform the lives of people with disabilities and those that often support them – their family and loved ones. — Mark Henley

Mark said recent figures from National Disability Services showed that if just 2% of people with a disability had appropriate support and could come off the pension and return to work, there would be a $2.5 billion injection into the economy.

An NDIS wouldn’t just signal major social reform, it also makes good, economic sense. — Mark Henely

Graham, who sustained quadriplegia in a motorcycle accident in 16 years ago, said the key recommendations in the Productivity Commission’s draft report, which was released on 28 February, further highlighted the dire need for an NDIS.

Currently, 1.4 million Australians have a serious disability, and unfortunately, a disability can be sustained in an instant. By 2030, there will be around 2.9 million people with a serious disability in this country. On top of those numbers, consider the family and friends who are often providing personal care to people with disabilities and it highlights the enormity of the issue. — Graham Streets

If implemented, a National Disability Insurance Scheme (NDIS) would begin in stages from January 2014. It would provide appropriate financial support for people with physical disabilities sustained either at birth (for example, cerebral palsy) or at any stage during their life (for example, a spinal cord injury).

This support would allow people to fund their personal care needs, therapy, aids and equipment, home modifications, and employment training, — expenses that they now have to pay for on top of their everyday — living expenses that all Australians face.

Spinal Injuries AssociationNDIS Website

The Spinal Injuries Association supports and empowers 2,000 Queenslanders who have spinal cord injuries. For more information on the organisation, please visit www.spinal.com.au or www.everyaustraliancounts.com.au for more NDIS information.

Resources

Disability adoption of wheelchair children

Adoption and Fostering Disabled Children

Children with disabilities are mostly raised in the homes of one or both biological parents, others grow up in adoptive and foster care homes or institutions. Historically children with disabilities were not considered adoptable, in the twenty first century that preconception has changed.

A greater recognition of the rights of persons with disabilities combined with a decreased adoption availability of healthy infants has lead to more favorable public attitudes toward adoption of special-needs children; those who are older, of minority race or ethnicity, members of sibling groups of three or more, wheelchair users including spinal cord injury, and those with profound intellectual disabilities.

Spinal cord injury wheelchair child

These more favorable attitudes were ratified in federal law in the United States under the Child Abuse Prevention and Treatment and Adoption Reform Act of 1978 and the Adoption Assistance and Child Welfare Act of 1980. This legislation expedited the adoption process by establishing adoption exchanges, training adoption workers, and offering financial subsidies for adoptive families, all of which promoted the adoption of children with special needs and disabilities.

Who Are Special Needs Children

The term “special needs” describes several categories; disabilities, race, age, sibling status, and at-risk. When a child is determined to be a member of a “special needs” group, he or she may qualify for adoption assistance payments, the amount of which is dependent on the type and severity of the need. Special needs children waiting to be adopted are referred to as “waiting” or “adoptable” children and have usually spent some amount of time in foster care.

Special needs children

Special needs children

Children with many types of disabilities have been adopted. Some disabilities are mild and correctable, whereas others are severe and life threatening. Although severity of disability and prognosis for a very limited lifespan are deterrents for some potential adopters, at least one-third of women currently seeking to adopt consider adopting a child with a severe physical or mental disability, and approximately 5 percent actually prefer to adopt this kind of special-needs-child.

As an example, in the 1980s and 1990s in the United States, the AIDS pandemic began to orphan children, some of whom were HIV-positive and therefore at high risk for both disability and early death. Many of these children were placed with foster families, became available for adoption, and were adopted. Although the number of pediatric AIDS cases in the United States is declining, worldwide it is increasing rapidly, and U.S. families who adopt internationally are at some risk for unknowingly adopting an HIV-infected child.

Who Adopt Special Needs Children

To quote a leading adoption agency in the United Kingdom — adoption.org.uk

Adopters of disabled children need understanding and commitment but they do not have to be “very special people”. We hear from those who adopt disabled children just how “ordinary” they are.”We don’t have any special powers or abilities. We just love children and our adopted youngster just gives us so much more love in return.” — adoption.org.uk

The criteria for adopting disabled children with spinal cord injury and other disabilities are much aligned with those for non-disabled children and these criteria vary little from one western country to another. Some factors that may cause an application to adopt children with a disability to be accepted or rejected include the following.

Factors Not Of Consequence

  • Employment Status; employed, self employed or unemployed
  • Housing Arrangement; renting or home owner
  • Income Level; irrelevant as long as you are financially secure
  • Marital Status; married or defacto
  • Religious Beliefs; any faith or none
  • Sexual Orientation; heterosexual lesbian or homosexual

Factors Of Consequence

  • Age; most countries require both adopters to be at least 21 years of age
  • Deceased Children; if you are the parent/s of a child that has died recently or been removed
  • Existing Children; the adopted child should be at least two years younger than any existing children
  • Fertlity Treatment; if you currently or have recently undergone fertility treatment
  • Health; you must be of sound mental health and adequate physical health
  • Housing Type; ability to provide settled safe spacious accommodation for the child
  • Offenders; if you have a recent criminal conviction or a pending criminal charge
  • Residency; most agencies require you to be a resident of the country you apply in
  • Single; singles and new couples are generally denied adoption

Four Ways To Adopt Special Needs Children

We agree with the general consensus that two methods — using an attorney and adopting from a country outside your own — while perfectly legal and fine for some are not always ideal. Placement through these methods can result in the loss of adoption assistance benefits for the child, cause language and cultural barriers, and discovery of genetic disease and other illness information not disclosed at the time of adoption.

The two means of adopting special needs children that are recommended are through public and private licensed adoption agencies. Children adopted through private licensed agencies are entitled to the same adoption assistance benefits as children who come through public adoption agencies. In the United States where private agency, parents should check if the agency is licensed and non-profit. Some states will refuse to write adoption assistance contracts for children placed through for-profit agencies.

Many report their GP as the best starting point to adopt a special needs child. Alternatively others suggest contacting a local adoption agency experienced in disability and/or inquiring online. No matter where you begin ask questions, follow up, and seek to learn as much as possible from a variety of reputable sources. Arming yourself with information before locking into legally binding contracts can avoid disappointment.

The Needs Of Special Children

Disabled child in a wheelchair

Disabled child in a wheelchair

Many are surprised to learn the adoption process for children with a spinal cord injury is more rigorous than for regular children. Somewhat unfortunately the additional financial cost of medicinal care, safe environment, and specialized equipment compounded by additional bureaucratic requirements deter some from adopting disabled special needs children.

It’s important to realize the gravity of the term “special-needs.” Just as young children outgrow their shoes, paraplegic and tetraplegic children with spinal cord injury outgrow their wheelchairs. Largely recognized, many countries offer financial assistance to help cushion these costs.

It is essential for parents wanting to foster or adopt any child with a disability to realize the additional requirements are not meant to deter the adoption of disabled children, it is to protect them.

Origins Of Special Needs Children

Children with disabilities who become available for adoption are generally relinquished voluntarily by their birth parents with the disability as a contributing factor, or are removed involuntarily because of abuse or neglect.

Approximately 20 percent of children with Down syndrome are voluntarily relinquished for adoption by their birth parents, almost always immediately after diagnosis. This relatively high percentage results in a large number of children with Down syndrome becoming available for adoption, and so children with Down syndrome are much in demand. Agencies frequently report that potential adoptive families need to wait for several years before such a child becomes available.

Many children with disabilities are adopted by their foster families, especially since 1997 in the United States when Public Law 105–89, the Adoption and Safe Families Act, was enacted. This complex legislation in conjunction with state regulations and policies has enacted a number of improvements in children’s welfare reform.

The amount of time children spend in foster care waiting to be reunited with birth parents has decreased. The number of disability related adoptions from foster care has increased, by as much as 50 percent in one year in the United States. Foster care adoptions in the United States grew from approximately 31,000 children in 1997 to 50,000 in 2001. A good proportion of these children have disabilities. An overall increase in adoptions from foster care also means an increase in the number of adoptions of children with disabilities.

Living Life With Special Needs Children

From the adoptive parent perspective, the rewards of adopting children with disabilities seem to far outweigh the difficulties. Many parents speak of the life changing experiences of their adoptions and report positive changes in their marriages, their other children, and their understanding of life meaning.

Like most parents, those with children in wheelchairs from spinal cord injury are proud of their child’s achievements. They delight in their child’s positive characteristics such as an affectionate nature, contagious sense of humor, and optimistic outlook on life, their ingenuity in overcoming obstacles and insightful acceptance of others. One indication of the success of adoptions is that many families choose to do it again. Often families will adopt more than one child with a disability, as research studies have identified, some over their lifetime have adopted more than 20 children with disabilities.

Disability adoption of wheelchair children

Adoption of disabled wheelchair children

The challenges in adopting children with disabilities are many. Parents report problems including a variety of negative child characteristics; worry, anxiety, or guilt relating to the child; an increase in family disharmony as a result of the child’s adoption; and a lack of emotional bonding. Medical emergencies and dealing with service providers can be stressful. Some children with disabilities up for adoption have suffered neglect and physical or sexual abuse, so psychological and behavioral issues can take form as over-sexualized behaviors or a victim mentality.

There is no evidence a spinal cord injury disability has ever caused disruption before finalization, or dissolution of a completed adoption. The likelihood of disruption or dissolution can however be reliably predicted according to a child’s behavioral disorders, externalizing or acting-out behaviors, in particular. Children who are older and have emotional or behavioral problems in addition to other disabilities are hard to place.

Potential adoptive families often have a preference of child types they wish to adopt, but to expedite placements agency workers may encourage parents to consider children who do not match those preferences, a practice called “stretching.” Many successful adoptions result from stretching, but disrupted and dissolved adoptions typically emanate from poor matches between child and family.

Disability wheelchair kids

Disability wheelchair kids

While there is no one family dynamic best suited to adopting a child with disabilities, some characteristics frequent successful adoptive families. These include prior experience with child rearing and with disability as well as family group decision making and a flexible parenting style. Higher education and income do not convert into more successful outcomes. Several studies conclude families with lower incomes and less education are more successful, possibly as their expectations for child achievement are less likely to be unrealistically high.

Post-adoption services are essential for families adopting children with disabilities, and use of these services is known to be associated with low disruption. Post-adoption service providers can help families identify, locate, and obtain assistance of a financial, educational, therapeutic, or medical nature.

Although a permanent placement is the ultimate goal for all children, including those with disabilities, it is not always achievable. At the beginning of the twenty-first century in the United States, more than a half million children were in foster care, with an average stay of almost three years. Although some of these children will return to their families of origin, and some will be adopted, others will remain in the foster care system throughout their childhood. Years in foster care usually result in multiple placements creating greater emotional and behavioral problems.

Conclusions

The majority of special needs foster children have psychological and developmental delays along with a variety of other disabilities. The adoption of children with extensive special needs has emerged as a viable option to institutionalization. Experienced mature therapeutic foster parents are trained to be responsive to many of the difficulties that handicapped children present. As special needs children in foster care are susceptible to poor outcomes, an enduring protective relationship with at least one supportive adult is imperative.

Where children remain in foster care until the age of majority, the transition to adulthood, including coordination with agencies serving adults with disabilities, only becomes more complex. Thus, it is important that children in foster care be returned to biological homes if possible or be placed for adoption as soon as is feasible. Stature and wealth are not always beneficial in adoption of special needs children, experience and flexibility are.

Resources

  • Dumaret, Annick-Camille, Catherine de Vigan, Claire Julian-Reynier, Janine Goujard, Dominique Rosset, and Ségolêne Aymé. 1998. “Adoption and Fostering of Babies with Down Syndrome: A Cohort of 593 Cases.” Prenatal Diagnosis.
  • Glidden, Laraine M. 1989. Parents for Children, Children for Parents: The Adoption Alternative. American Association on Mental Retardation Monograph No. 11. Washington, DC: American Association on Mental Retardation. 2000. “Adopting Children with Developmental Disabilities: A Long-Term Perspective.” Family Relations.
  • Gordon, Jeanne N., William Ganger, and Kristin Gist. 2002. “Developmental Delay in Young Children in Child Welfare by Initial Placement Type.” Infant Mental Health Journal.
  • Marshner, Connaught, ed. 1999. Adoption Factbook III. Washington, DC: National Council for Adoption.

Websites

pediatric spinal cord injury

Pediatric Spinal Cord Injury

Spinal cord injuries, particularly in children, can present parents and caregivers with complicated and countless challenges. Just as adults are continually one degree of separation away from paralysis and spinal cord injury, so too are children. Depending on the source of the data, the incidence of pediatric spinal cord injury (ages 0 to 20) reportedly accounts for almost 20% of all new spinal cord injuries each year. The 0 to 15 year age group accounts for 2%-5%, while the 16 to 20 age group accounts for 14%-18% of these new injuries. More male children incur SCI than female children.

Pediatric Spinal Cord Injury Physics

Depressed child in ill fitting wheelchair

Depressed child in ill fitting wheelchair

In both child and adult, there are three unique mechanisms which create a spinal cord injury: longitudinal compression, hinging, and shearing. Each mechanism causes unique spinal and neural injuries which call for specific acute treatment and long term care management.

A longitudinal compression occurs when one vertebra is crushed lengthwise against another; one such accident which can cause this type of injury can occur as the result of a fall from a height. The mechanism of hinging occurs if the spinal column experiences extreme bending such as whiplash. The movements experienced during whiplash often cause additional fractures in children.

The predominant causes of injuries are pedestrian ( vs. vehicular) accidents and falls, accounting for over 75% of all pediatric spinal cord injuries. Shearing of the spinal column occurs when, for example, a pedestrian is struck by an automobile. The shearing mechanism is a combination of hinging and a rotational movement causing a jerking, twisting and stretching motion of the spine.

Depending on the strength of force and the age of individual, the severity of the injury and the corresponding extent of medical intervention is related to whether vertebra was dislocated or fractures, ligaments and connective tissue was bruised, ruptured or severed, and if these tissues sustained bruising. Additionally, subsequent blood clots or even shock to the surrounding spinal region can contribute to the level of injury.

Etiology Of Pediatric Spinal Cord Injury

Due to a larger head size relative to a smaller proportioned body, children tend to be heavier on top. Vigorous, abusive shaking by an adult can quickly damage a small, immature spine of a top-heavy child. The instability and flexibility of the young child’s neural/spine structure can contribute to the level of injury. The spinal cord in the youngest of children can stretch up to 2 inches (5.08 cm), whereas in older children and adults the spinal cord may stretch only a ¼ inch (0.64 cm). The greater flexibility allows for more stretching and increases the potential damage to the young spinal cord with little or no obvious damage to the surrounding bony outer structures.

Spinal cord injury wheelchair child

Spinal cord injury wheelchair child

At 40% moving vehicle accidents continue to be the primary cause of SCI in children; in two-thirds of these accidents the children were not protected by any restraints. Ill-fitting car seats or improperly adjusted seat belts can also generate a spinal injury. Bruising and additional intra-abdominal trauma are the traditional markers of inappropriate seat belt or car seat use, commonly referred to seatbelt syndrome.

Although statistically rare, infants can sustain spinal injury as the result of a birthing accident and often result in a poor outcome. During a protracted and difficult birthing process, the injury will typically affect the spinal cord in the neck area. Standard presentation of the fetus just prior to birth is a “normal occipital” position, in that the top of the head is firmly pressed against the bottom of the womb.

There are times when the fetus assumes a “breech position”. Although “breech” describes a number of fetal positions including buttocks, crossed legs, or feet directly above the birth canal, a particularly risky position for the fetus is having the brow or face pressed against the bottom of the womb. While in the birth canal, the fetus’ spine or neck can become extended, bent or compressed, particularly if labor becomes lengthy and difficult. Mechanical repositioning and use of forceps for infant extraction also contribute to the possibility of birth injury.

Anatomic and behavioral differences between adults and children account for the variation in injury type and severity. Almost 75% of SCI in children occurs in the C1-7 neck region, the younger the child the higher the cervical injury. As children approach 8–10 yrs of age, the spine has grown to almost adult size, therefore injures more closely mirrors adult SCI and treatment. As children begin to approach the age of eight, pediatric SCI begins to resemble adult SCI, with less injuries at the C1-2 level and more injuries at the C5-6.

While birth accidents, vigorous shaking, and improper use of vehicle restraints are unique to the population of youngsters, the remainders of injury causes are similar to that of the adult population. These spinal injuries can also be attributed to falls, sports injuries, diving accidents, trampoline accidents, and violent assault.

Pediatric Spine Stabilization

Acute treatment of a child diagnosed with SCI depends on age of child and the level of injury. Of primary concern to medical staff is stabilization, preventing vertebra from moving and shifting and risking further damage to spine.

Treatment is highly individualized, dependant on the child’s age, severity of spinal damage, and other injuries the child may have incurred. The child’s rate of growth, smaller bones, some of which have not fused yet, can create surgical dilemmas. There are two standard methods for spinal stabilization for consideration: the first method, “decompression”, takes pressure off the spine; the second uses wires, screws, metal plates, or rods to surgically stabilize the spine. “Internal fixation or instrumentation” protects the tissues of spinal cord while providing bone strength.

Careful consideration is given in deciding if surgery is required and if so, when it should be performed, as surgery can have adverse implications on a child’s growth and development. Additionally, risks from surgery are higher for young children. Timing of surgery risks: children who have not completed growth at time of injury (remember the spine is almost adult size between 8-10 yrs) may encounter problems later.

While stabilizing the vertebrae is of primary importance, a consequence of such surgery is curvature of the spine if the child’s spine is fixated while child is still growing. A growth spurt can trigger scoliosis if surgery is done before the end of major growth spurt. Curvature of the spine as a consequence of spinal cord injury is observed more in girls than boys. This curvature can also cause hip dislocation. Treatment for spine deformity is bracing, or more surgery if curvature is severe and bracing doesn’t work.

The use of methylprednisolone is becoming a protocol administration in trauma units and children’s hospitals for SCI. This medication, widely marketed as Solu-Medrol, has been found to provide multiple levels of favorable outcomes in some children and adults experiencing SCI.

Pediatric Wheelchair Choices

Basketball wheelchair adolescent

Basketball wheelchair adolescent

Not so long ago, if a child experiencing SCI was in need of a wheelchair, very little thought was given to the size of the child and an appropriately sized chair. Prescribing a chair suitably matched to the child’s level of paralysis, physical capabilities, and interests simply was not a part of the rehab agenda. More often than not, the child was given an adult size chair for the child “to grow into”. Now, as with adult chairs, there are far more options available to choose from.

Although the circumstances of a child’s physical needs are of primary importance, their personal preferences are an important factor. A wheelchair is not just a form of transport; it represents an extension of the child’s personality. It should suit their physical needs as well as their sense of adventure and need for inclusion. There is more to the choice than power or manual as far as the child is concerned. Involving the child in the decision making process when choosing a wheelchair or other mobility device is important. As they grow older, they are more adequately able to describe their needs and desires.

Just as a child enjoys picking out their own shoes and reading glasses, so too is it beneficial for the child to participate in the selection of their mobility devices. Manufacturers are also responding to the needs of children in having chairs that fit more easily into their environment and social situations. This may be accomplished with a more streamlined appearance and/or a wider selection of upholstery and/or frame colors.

Because their bodies are rapidly growing and changing, choosing chairs for children and adolescents requires consideration of factors which are not a part of the adult wheelchair selection process. One of these is the frequency with which a chair must be changed or replaced: the high cost of replacing a chair, and because insurance providers often place limitations on the frequency of chair replacement, purchasing a new chair each year can be financially prohibitive, if not impossible. Some government bodies, associations and charities offer financial assistance to part fund the exorbitant cost of wheelchairs but typically they only cover a small range of basic chairs.

Growth chairs or chairs with growth kits offer an alternative by allowing adjustments to be made in the existing chair to accommodate a growing child. This may include utilizing replaceable components or designing the chair with features that can be converted from a smaller size to a larger size. Considering how fast children grow, particularly during adolescence since puberty can include sudden and explosive growth, investing in a growth chair could save money over the long term.

Wheelchair children growing up by the beach

Wheelchair children growing up by the beach

Conclusion

This article only briefly examines just a few of the many issues encountered by children who have been diagnosed with a spinal cord injury. A young child nestled in smaller size wheelchair or other means of mobility may cause some people to react in a negative manner invoking exclusion. Many tend to pity a disabled child instead of celebrating their abilities and their childhood. Some fail to see the lively and happy child, focusing instead on what they may or may not be able to do.

Children are amazingly resilient and strong. In an accepting understanding supportive environment even the youngest child can and will learn how to adapt to life with a spinal cord injury. Making age-appropriate adjustments for children during the early stages of injury and recovery can greatly increase the chances of positive outcomes for the child.

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spinal injury wheelchair parents

Wheelchair Parents With Spinal Cord Injury

Some of the best parents you will ever meet are wheelchair users. Children of wheelchair parents are well adjusted, bright, caring, kind hearted, willing active family participants. They are very accepting of people and cultures outside of their own. Children of wheelchair parents and disabled parents more than most, display a healthy positive disposition, with tremendous respect and admiration for their parents knowing first-hand the daily challenges they face.  

Spinal cord injury wheelchair mother and children

Wheelchair Mother and Children

It is important to note that while we say most, like any demographic, not all wheelchair mothers and fathers are good parents. A disability like spinal cord injury is never an excuse for bad parenting. You may be inclined to make allowances, or conversely be overly critical of, parents with a disability. We suggest you treat wheelchair parents just like any other parent. Ask yourself if you would step in if there was no disability. When it comes to reporting neglect and abuse, a child’s safety and welfare must always be put before any other factor.  

Enza Ronaldi, a wheelchair mother with muscular dystrophy admits when in public with her children,

“I am very aware of people looking at me, and very aware of how I’m acting with my children because I know I’m in the spotlight.” But, she concedes with a laugh, “Maybe they’re just thinking, ‘Oh, what cute kids!’”  – Enza Ronaldi

Desirable Wheelchair Parenting Qualities

Cornell University’s Stephen Emlen and colleagues asked nearly 1,000 people aged 18 to 24 to rank several attributes, including physical attractiveness, health, social status, ambition, and faithfulness, on a desirability scale. People who rated themselves favorably as long-term partners were more particular about the attributes of potential mates. After fidelity, the most important attributes were physical appearance, family commitment, and wealth and status.  

“Good parenting, devotion, and sexual fidelity – that’s what people say they’re looking for in a long-term relationship.” – Stephen Emlen  

While worthy of consideration we need to use this information in context. These are what people say they’re looking for. These are not necessarily what it takes to be an excellent partner and parent. The data only spans a six year age difference. No statistics on the study group’s backgrounds were given and nowhere was a disability mentioned. With a focus on spinal cord injury and wheelchair parenting our list is quite different.  

Couples considering parenting where one or both parents are wheelchair users I offer one crucial piece of advice. The measure of a man is not his height, it is how high he holds you. Not one of the skills required to be a good parent is of a physical nature. Compassion patience love and support, fidelity honesty and loyalty, are required and so top our list of admirable parenting qualities.  

The human compulsion to seek an attractive tall athletic man or beautiful curvaceous healthy woman with good teeth dates back to caveman days. Partner selection based on genetic aesthetics ensured best family survival and longevity. Athletic men made good hunters, healthy attractive women bred healthy attractive children and the cycle repeated continuing bloodlines. There were no wheelchairs. Those with a disability born or incurred rarely lived more than a few years. A spinal cord injury meant imminent death.  

We don’t live in caves anymore, we have dental plans, yet still many chose partners based on aesthetics. Without the qualities essential to parenting in the modern era such relationships often fail. Equally a spinal cord injury does not gift you good parenting capabilities. It’s important not to dismiss the ability to learn grow into and develop good parenting qualities.  

For these reasons compassion patience and love top our desirable wheelchair parents list. An individual with spinal cord injury who is kind to animals, respectful and kind to family. Loving understanding and compassionate toward you, make good lifelong partners and parents. They typically afford the same ideals toward children be they biological or inherited children.  

Cost To Parents With Spinal Cord Injury

Certainly wealth and status are sought by the majority of parents wanting to provide their children the tools and opportunities to good education, health services, safety and social development. You only need consider a mobile (cell) phone. Used responsibly it can enhance all the above in a child’s life. These are not cheap devices especially if your child changes phones as frequently as those I know.  

Spinal cord injury wheelchair father carrying child

Wheelchair Father and Child

Living with a spinal cord injury is expensive costing around $167,000 AUD annualy to meet the basic needs of a paraplegic. The higher the level of injury the higher the cost of living post injury. Quadriplegia (tetraplegia) pushes this figure out to $392,000 AUD for essential basic services and equipment. The expense of high level quadriplegia requiring mechanical ventilaton is $1,047,000 AUD per year. This is in a country that provides (for those who qualify) free basic health care, education and subsidised housing.

Add the annual cost of $11,000/boy and $14,000/girl and clearly evident parents with a disability face huge financial expenses beyond the average citizen. Mobile phones and other “luxury items” come secondary to the cost of spinal cord injury. 

  • Length of initial hospitalization following personal injury in acute care units: 15 days
  • Average stay in rehabilitation unit: 44 days
  • Initial hospitalization costs following injury: $140,000 USD
  • Average first year expenses for a SCI injury (all groups): $198,000 USD
  • First year expenses for paraplegics: $152,000 USD
  • First year expenses for quadriplegics: $417,000 USD
  • Average lifetime costs for paraplegics, age of injury 25: $428,000 USD
  • Average lifetime costs for quadriplegics, age of injury 25: $1.35 million USD
  • Percentage of SCI individuals who are covered by private health insurance at time of injury 52%
  • Percentage of SCI individuals unemployed eight years after injury 63%.

 
New Zealand has taken lead in recent years recognizing that the actual cost of living with a spinal cord injury is the real disability. Australia Canada Switzerland Germany and other countries are adopting the NZ model through social and medical reform. The lives of wheelchair users have proven to be greatly enhanced by early financial assistance. From basic human rights to productive contributors in society early socio-economic support is key. 

Restoring Broken Spines And Homes

Some who accidently receive a spinal cord injury already have a partner or spouse children and extended family members. This can compound a pressure to resume their previous lifestyle and parental role. While desirable and possibly noble that approach is not practical. A spinal cord injury is for the majority a permanent disability. Wheelchair parents constantly report feelings of “sitting on the sidelines” being “unable to wrestle on the floor” and interact in sports and many other activities. It can become overwhelming. Some of these same wheelchair parents say the trick is to find new activities they can involve their children and participate in.  

Modern materials and adaptive technologies are greatly enhancing the opportunities and experience of parenting with a disability. A wide range of adaptive products are available as necessity continues to drive innovation and better design. Handicap friendly equipment is often more user friendly for all. From cloth nappies that come with Velcro, to wheelchair driver accessible vehicles. Amazingly functional wheelchairs and high-tech adaptive sporting equipment also enrich the lives of handicapped parents.  

The Right To Parent With A Disability

Not everyone believes that people with disabilities should have the opportunity to be parents. In the 1970s the practice of reproductive sterilization amongst individuals with intellectual impairments was common and is still practiced. I know a schizophrenic who married a bipolar schizophrenic whom together had a baby girl with various non-visible developmental and physical handicaps. To see this family in the street they looked like any other. Were they good parents? A judge thought not, they lost custody of their child, and eventually divorced.

A spinal cord injury is not contagious nor genetically contractible. To assume that a wheelchair makes anyone less capable or unworthy of parenting is simply a foolhardy misconception. Greater medicinal knowledge, social understanding and awareness establishes’ the opportunity to parent as a basic human right.  

It could be argued that spinal cord injury wheelchair parents are more responsible than most. How many able-bodied potential parents have their sperm and/or eggs tested for genetic integrity, motility and viability, prior to conception? How many financially plan and qualify for various schemes, professional advice, and support? Most wheelchair parents do. The common argument is, you need to pass a test and hold a license to drive a car. But anyone can have a baby, no test or license required. We see truly horrific abusive parents in news and other media reports, very seldom are they wheelchair users.  

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