Passed by Participants of the International Personal Assistance Services Symposium Sponsored by the World Institute on Disability, Convened September 29 to October 1, 1991, Oakland, California. Published in: American Rehabilitation, Volume 24, Number 4, Winter 1998, Personal Assistance Services, Part 2 of 2. American Rehabilitation is the official publication of the Rehabilitation Services Administration (RSA) 330 C Street S.W. Washington D.C. 20202-2531.
WE, PEOPLE WITH DISABILITIES AND OUR ALLIES, have come together from across the United States and around the world from September 29-October 1,1991, in Oakland, California, at the symposium entitled EMPOWERMENT STRATEGIES FOR THE DEVELOPMENT OF A PERSONAL ASSISTANCE SERVICES SYSTEM.
This conference has focused on personal assistance services as an essential factor in independent living, which itself encompasses the whole area of human activities, including but not limited to housing, transportation, community access, education, employment, economic security, family life and interpersonal relationships of choice, leisure, and political influence.
Recognizing our unique expertise derived from our experience, we are taking the initiative in the development of policies that directly affect all people with disabilities. People with disabilities are entitled to be enabled to achieve the highest possible level of personal functioning and independence through appropriate education, health care, social services and assistive technology, including, as necessary, the assistance of other people.
We firmly uphold our basic human and civil rights to full and equal participation in society as called for in the Americans with Disabilities Act and the United Nations Universal Declaration of Human Rights. We consider independent living and the availability of support services to be critical to the exercise of our full human and civil rights, responsibilities and privileges.
To this end, we condemn forced segregation and institutionalization as direct violations of our human rights. Government policies and funding should not perpetuate the forced segregation, isolation, or institutionalization of people with disabilities of any age. The Americans with Disabilities Act was passed into law to promote the equalization of opportunity. The passage of comprehensive federal personal assistance legislation is essential to realizing the historic promise of the Act.
The recommendations of the United Nations World Programme of Action (s 115) specifically state that "Member states should encourage the provision of support services to enable disabled people to live as independently as possible in the community and in so doing should ensure that persons with a disability have the opportunity to develop and manage these services for themselves."
In support of the international movement of disabled people and in Disabled Peoples' International, which has a special commitment to setting up a network of initiatives for personal assistance services as part of the implementation of the equalization of opportunities, we call on governments and policy makers to assure greater and more equitable access to personal assistance services based on the principles below:
1. Personal assistance services are a human and civil right. These services shall serve people of all ages, from infancy throughout a person's lifetime, when the person's functional limitation(s) shall necessitate the services. This right is irrespective of disability, personal health, income, marital and family status, and without discrimination on the basis of race, national origin, cultural background, religion, gender, sexual preference, or geography.
2. All people with disabilities (and their self-designated or legal representatives if applicable) shall be informed about their rights and options related to personal assistance services inaccessible formats and appropriate languages. All levels of personal assistance services should respect the privacy and confidentiality of the user.
3. Personal assistance users shall be able to choose from a variety of personal assistance services models which together offer the choice of various degrees of user control. User control, in our view, can be exercised by all people regardless of their ability to give legally informed consent or their need for support in decision making or communication.
4. Services shall enable the users to exercise their rights and to participate in every aspect of sociocultural life including, but not limited to home, school, work, cultural and spiritual activities, leisure, travel, and political life. These services shall enable disabled people, without penalty, if they so choose, to establish a personal, family and community life and fulfill all the responsibilities associated with those aspects of life.
5. No individual shall be forced into or kept in an institutionalized setting because of lack of resources, high costs, sub-standard or non-existent services or the refusal and/or denial of any or all services.
6. These services must be available for up to seven days a week for as many hours as needed during the 24 hour period of the day, on long-term, short-term and emergency bases. These services shall include, but are not limited to assistance with personal bodily functions; communicative, household, mobility, work, emotional, cognitive, personal, and financial affairs; community participation; parenting; leisure; and other related needs. The user's point of view must be paramount in the design and delivery of services. Users must be able to choose or refuse services.
7. Government funding shall be an individual entitlement independent of marital status and shall not be a disincentive to employment.
8. Government funding must include competitive wages (based on consumer cost experience within the private sector) and employment benefits for assistants and related administrative and management expenses.
9. Payments to the user shall not be treated as disposable, taxable income and shall not make the user ineligible for other statutory benefits or services.
10. Sufficient governmental funding shall be made available to ensure adequate support, outreach, recruitment, counseling, and training for the user and the assistant. Government efforts shall ensure that a pool of qualified, competent assistance shall be available for users to access through a variety of personal assistance services models, including, but not limited to, individual providers and full service agencies.
11. The user should be free to select and/or hire as personal assistants whomever she/he chooses, including family members.
12. Children needing personal assistance services shall be offered such services as part of their right to inclusive education as well. Such education and personal assistance services shall include age appropriate opportunities to learn to use and control personal assistance services effectively.
13. There shall be a uniform appeals procedure which is independent of funders, providers, and assessors that is effected in an expeditious manner and allows the applicant/user to receive advocacy services and legal counsel at the expense of the statutory authority.
14. In furtherance of all the above, users must be formally and decisively involved and represented at all levels of policy making through ongoing communication and outreach in planning, implementation, design, and development of personal assistance services.