Protection & Advocacy Inc.

Advancing the rights of Californians with disabilities

LEGISLATION & PUBLIC
INFORMATION UNIT
1029 J Street, Suite 150
Sacramento, CA  95814
Tel: (916) 497-0331
TTY: (916) 497-0835
Fax: (916) 497-0813
www.pai-ca.org

Personal Autonomy Principles

(Amended 6/16/2007)

PAI is committed to furthering the personal autonomy rights of individuals with disabilities. Personal autonomy rights include the following rights: the right to self-direction and self-determination, the right to informed consent for treatment, right to appoint an agent to make decisions when the individual is unable to make their own decisions, right to refuse treatment, right to have minimum standards for conservators, right to parent, right to marry and engage in consensual sexual relationships, the right to vote, and the right to information about their rights. These principles apply to all individuals with disabilities, regardless of race, class, gender, disability, sexual orientation, gender identity, religion, or national/ethnic origin.

In the case of children with disabilities, it is not always clear who best represents the right of the child to be protected against involuntary sterilization, drastic medical interventions, procedures, or experimentations that violate the notion of personhood. In addition, societal support for families of children with disabilities has not progressed at the same pace as medical procedures. Families may be isolated and unaware of the potential of services to improve the lives of their children with disabilities.

Services, supports, and accommodations that improve the lives all persons with disabilities may include assistive technologies, respite services, therapies, habilitation and home and community-based services.  For children with disabilities, this may also include special education and other related services.

The Right to Personhood, Bodily Integrity and Personal Autonomy of Persons with Disabilities

All persons with disabilities, including children with disabilities, have the right to maintain personhood, bodily integrity, and personal autonomy.

PAI will support and encourage the participation of children with disabilities, to the extent that it is feasible, in medical decisions that affect their lives.

PAI will oppose policies that promote the sterilization on persons with disabilities.

PAI will oppose efforts which allow for or encourage the exploitative medical experimentation on all persons with disabilities.

PAI will oppose the use of medical procedures that violate the autonomy and personhood of children and adults with disabilities.

PAI will support measures that ensure that all persons with disabilities, including children with disabilities, have the services and supports they need to grow, develop naturally, and to live fully integrated lives of quality in their own homes and communities.

PAI will support measures that provide for education, community support, and increased awareness for families of potential services to improve the lives of their children with disabilities.

Informed Consent and Right to Refuse Treatment, Services and Release of Confidential Records

Individuals with disabilities have the right to give informed consent to medication, treatment and services and receive medication support services.

Individuals with disabilities have the right to refuse treatment, including Electro-Convulsive Therapy (ECT).

Individuals with disabilities have the right to develop Advance Directives for Health Care (ADHC) and appoint an agent to make decisions for them when they are no longer able to make their own decisions. Conservatees have a right to have their advance directive followed by their conservators.

Individuals with disabilities have the right to have medical and mental health records remain confidential, and to review their own records.

Conservatorships

Individuals with disabilities who are conserved have the right to expect that their conservator will act in concert with their wishes and needs.

A conservatee has the right to dismiss a conservator who is acting in a way that goes against the conservatee’s wishes and needs. A conservatee also has the right to dismiss a conservator without any stated cause.

Individuals with developmental disabilities have the right to a limited probate conservatorship instead of a general probate conservatorship.

Individuals under LPS conservatorship or commitment have a right to an individualized assessment of any limitations or deprivations imposed by the conservatorship or commitment.

Parenting Rights of People with Disabilities

Individuals with disabilities have the right to exercise their right to parent regardless of the nature and severity of their disability.

Parents with disabilities should have access to all supports and services available under the law to assist them in parenting.

Sexuality Rights of People with Disabilities

People with disabilities have the following rights regarding sexuality whether they live in the community or in institutional settings:

People with disabilities have the right to marry the person of their choice.

People with disabilities have the right to engage in consensual sex, to engage in activities of sexual expression that do not infringe on the rights of others, and to a private place where they can express their sexuality.

People with disabilities have a right to educational information concerning sexuality and contraceptives.

People with disabilities have the right to any assistive technology, medical care, or equipment needed to express their sexuality.

People with disabilities have the right to decide whether or not to use contraceptives and to obtain the contraceptives of their choice.

People with disabilities have the right to affirmation as sexual beings.

People with disabilities have the right to refuse a sexual relationship with another individual. A person with a disability should never be coerced to have sex.

People with disabilities should be free from discrimination, harassment, interference, and retaliation when exercising their rights to sexuality and when exercising their right to refuse to engage in any sexual activities.

Voting Rights of People with Disabilities

People with disabilities have the right to vote whether they live independently, in group living arrangements or in institutions.

People with disabilities should be free from interference or coercion when exercising their right to vote, including registering to vote and casting their vote.

People with disabilities have the right to accessible voting systems, assistive technology and alternative formats when exercising their right to vote.

People with disabilities have the right to vote independently and privately on secure accessible voting systems.

People with disabilities have the right to full and equal access at polling places.

People with disabilities should have access to nonpartisan information about the voting process, parties, issues and candidates that they can understand and is available in alternative formats.

People with disabilities have the right to reasonable modifications in voting policies, practices and procedures in order to exercise their right to vote.

Policy #1024.01

Adopted 6/19/2004;
Amended 6/16/2007