An International Summit Conference on Independent Living
Washington, DC
September 21-25, 1999
___________
Independent Living Services
Washington, DC
September 21-25, 1999
___________
Independent Living Services
Introduction
The term Independent Living was coined in California in 1959, according to Adolf Ratzka from Sweden, when a law was passed allowing counties to provide personal home services to people with disabilities in the community. However, there is a great disparity internationally in the availability of services, whereas the philosophy of the Independent Living movement is more unified around the world (see separate chapter on IL definitions in this report). Information about IL services being provided around the world was collected through surveys, discussions during the conference and through a timeline completed by the Summit participants.
Surveys
IL Summit participants were asked to complete a survey with a list of services promoting independent living to determine which ones were available in their countries. Of the 50 countries represented, surveys from 20 countries were sufficiently complete for analysis. Though not representative of the breadth of the countries at the Summit, the surveys do offer a framework to understand the plenaries and small group discussions at the conference. Countries from all 4 regional groupings are represented in the surveys. Independent living services of some kind are available in all but one of the countries surveyed. The results break down as follows:
Of the 20 countries represented in the surveys, only 40% indicated that there are IL Centers in their country. However, this can be misleading. What defines an Independent Living Center? In some places, it is a physical building, were people with disabilities can get services. In the United States, ILCs are defined somewhat through the requirements of their Federal funding. In Norway, surveys indicated that there are no IL Centers, however IL services are being provided across the board. In other places, such as Finland, people with disabilities organized peer support and advocacy activities years before they opened a center in a physical sense. This is also true for Russia, where peer support and self-advocacy services are going on in some regions, without a physical center. Therefore, an interesting result of this survey is indications of the development of "IL Centers without walls."
Training Services
Training as a topic area is extremely broad. In the context of this section, training services do not include areas more closely linked with "education." In the context of IL services, this section intends to cover international examples of training programs developed primarily to empower people with disabilities to live independently. These include primary skills training, such as independent living skills training, training for users of personal assistance services, self-advocacy and other advocacy training and employment skills training. Some examples of training being provided to people with disabilities internationally include:
Germany: BIFOS e. V. is located in Kassel. They are a research and training institute founded to support people with disabilities to be as informed as possible in how to lead a self-determined life. They provide six-week training courses for peer counselors and for disabled women peer counselors. In addition, they provide a six-weekend training course in self-advocacy.
Finland: In 1999, the Threshold provided 20 "know your rights" training courses in different parts of the country in conjunction with local advocacy groups. In addition, both Finland and Sweden have developed extensive "Boss courses" to assist disabled people to transition from objects of services to employers of personal assistants.
Russia: The All-Russian Society of Disabled People has an extensive training program. ARSD trainers work in 30 Russian regions providing ARSD staff training in disability issues, public education through the media, disability legislation and NGO management. In addition, they have developed a curriculum in business plan development. Four ARSD Regional Boards (Novgorod, Krasnodar, Perm and the Republic of Komi) have active disabled youth programs, where they have developed disabled youth advocacy teams. These disabled youth activists have received training and are currently providing disability awareness lessons to children in local schools. These youth teams also have received training and are currently leading peer support groups and in self-advocacy workshops for other youth with disabilities in their communities.
USA: The California Foundation for Independent Living Centers manages a systems change network of disabled activists from 21 of the Independent Living Centers in California. In order to support the network to recruit advocacy teams of people with disabilities in each community, CFILC provides these activists training in public education through the media, public speaking, volunteer recruitment, community organizing, advocacy and training of trainer techniques. In addition, they receive training on the Independent Living Movement and Philosophy, the Americans with Disabilities Act, the California system on personal assistance services, assistive technology, housing and other advocacy issues. In 1999, there were 21 advocacy teams with 256 volunteers working to promote the advocacy agenda of people with disabilities in each community.
Brazil: Centro de Vida Independente in Rio conducts annual trainings on independent living for people with disabilities to expand or improve IL services. These trainings include sections on IL philosophy and history, as well as training in peer counseling, and in how to conduct independent living skills training. They also conduct employment trainings, which are independent living skills trainings for the workplace. Additionally, they conduct training on accessibility, peer-counseling, and independent living skills training for persons with spinal-cord injuries.
Japan: The Human Care Association provides three levels of IL training, ranging from skill development to overseas study. Details appear in the Country Portraits section of this report.
Personal Assistance Services
Adolf Ratzka, from Sweden, moderated a plenary session on PAS. For many in North America and Europe, the of topic personal assistance services is one of the core features of the independent living movement. Ratzka expressed the opinion that for personal assistance users, the issues of independent living – self-determination, user-control – have a concrete meaning in their daily lives. "It is not just the quantity of services, even more, it is the quality of the services that determines whether the services make us more dependent or independent." Questions such as how are PAS services paid for and the degree of consumer control have a large impact on the ability of a PAS user to live independently. However, in spite of these questions, only 40% of the countries answering the surveys indicated that there were personal assistance services available in their countries. In poor countries, the availability of these services at all can be more critical to an individual’s independence, quality of life and even survival.
Eileen Giron Batres spoke about the situation in El Salvador, where there are no government-supported personal assistance services. In her country, most services are provided either by family members or by paying directly for an assistant. One story she related was about a brother and sister, both PAS users. They did not have the money to have two assistants, so they shared one. Invariably, the brother would always get assisted first. Another issue she raised was that problems often arose within families that provide the assistance. When a family member has to leave home to work, the disabled family member often receives only intermittent assistance. Not only does the person with a disability lack the ability to be active during these times, a pattern of intermittent assistance often causes severe medical problems. She concluded with the point that in poor countries, the issue is not just the quality of services, but their general availability. There are no institutions for severely disabled people in El Salvador. This is an important option where there is no alternative, regardless of the lack of consumer control and other IL priorities.
Summit participants discussed a number of models of personal assistance services around the world, where programs exist.
Source of funding
In the United States, Norway, Sweden, the UK, and Japan, funding for PAS programs comes from public funds. In Brazil and El Salvador, there is no public money to fund personal assistance. The users pay for the services themselves. In Germany, there are two sources of funding, the Department of Social Welfare (using state funds) and the long-term care insurance, which is shared between the employer and the individual. In the US, personal assistance is funded through Federal, State and private sources. Where government funding exists, participants indicated that the level of funding was the key issue. In Wisconsin and Missouri, in the US, PAS providers received between $6-8/per hour, without medical benefits or paid vacation. This causes shortages of people willing to work as personal assistants, lowering the quality of the services. In 1999 alone, 27 home health care organizations in Wisconsin have closed because of insufficient funding.
Flow of money
Answers to this question ranged across the board. In many countries, state-run medical-model institutions receive funding directly and provide the services, leaving the consumer completely out of the loop. Often in the United States, Germany, Japan, Norway and Sweden, funding goes from the government to the service provider, which arranges for the services. In a few states in the US, ILCs act as the service provider of personal assistance services. In the US, many state programs are considering funding the PAS user directly, allowing them to chose their own providers. In California, a PAS user who requires enough hours of assistance can demand to receive money directly from the government to pay for personal assistance. However, the majority of PAS users in California do not know about this option. In this case, the county pays the provider based on timesheets submitted by the consumer. Summit participants noted that when nursing homes or other institutions receive funding and provide the services, the cost per hour of personal assistance was much higher than in home-based situations where funding flows through disability-run organizations or to the consumer directly. For example, in Germany long-term care insurance will pay Care Officers to provide personal assistance, whereas the Department of Social Welfare will pay the assistance user directly to pay a provider of his or her choice. In the second case, the amount of money per hour of personal assistance is less than the amount paid to the Care Officer. The rational is that the PAS user would hire family members or other non-professionals. In the UK, the 1996 Direct Payments Act provides national funding through the local government to the PAS user, who hires the provider.
Who is the Actual Employer?
In most cases, the employer is the service provider. This is true for some PAS programs in the United States, Japan, and Germany (in the case of the long-term care insurance). In California, the PAS user is the co-employer. In both Norway and Sweden, there are PAS cooperatives, where the user employs the provider through the cooperative. Each PAS user is provided with a certain number of hours of PAS which is put into his or her account at the cooperative. The cooperative is the legal employer, responsible for payroll and taxes. This protects the user from liability in case a provider is fired, for example.
Conclusion
This report indicates a great diversity around the world in the availability of IL services, from peer support through personal assistance services and training. In some cases this diversity is due to economic reasons. Where there is not sufficient funding to provide a wide range of services in the community, such as Russia, disability leaders have focused on training – to build wheelchairs or to change public attitudes on disability. Or in Brazil, where economic self-sufficiency through employment has been identified as a independent living priority. In other cases, this diversity is due to cultural factors. In spite of this diversity, one point was made repeatedly at the Summit, from participants coming from countries where many services are available and from countries where services are desperately needed, regardless of culture or socio-economic level: that the underlying principle of any IL service is of consumer control, design and direction of the service.
©1999 ILRU Program. All rights reserved.