Woman speaking into megaphone surrounded by people at an outdoor protest
Human and Civil Rights/in /by
The human and civil rights of all people with intellectual and/or developmental disabilities1 (I/DD) must be honored, protected, communicated, enforced and thus be central to all advocacy on their behalf.

ISSUE

Today, as throughout history, the human and civil rights of people with intellectual and/or developmental disabilities have been unjustifiably limited or denied based on a lack of understanding of their humanity. These rights include the right to autonomy, dignity, family, justice, life, liberty, equality, self-determination, community participation, property, health, well-being, access to voting, freedom from unwarranted and unjustifiably extensive guardianship, equality of opportunity, and other rights recognized by law or international declarations, conventions, or standards.

Though freedom from discrimination is a basic human right accepted as part of the fundamental law of the land, advancing the human and civil rights of people with intellectual and/or developmental disabilities presents particular challenges.

Many individuals, businesses, federal, state, and local government agencies and other entities remain unaware of or ignore the human and civil rights of people with intellectual and/or developmental disabilities. As a result, people with intellectual and/or developmental disabilities face unique challenges, including the following:

  • A history of discrimination and exclusion from meaningful choice and participation in employment, housing, voting, transportation, and other programs, activities, and services provided by the public and private sectors of society;
  • Social and cultural attitudes of devaluation and fear;
  • Unfounded beliefs that people with intellectual and/or developmental disabilities cannot and/or do not contribute to society;
  • Societal failure to provide the supports wanted and needed for full community participation, equal opportunity, independent living, and economic self sufficiency;
  • Overprotection without freedom to exercise individual rights;
  • Under-payment for labor and services and denial of the means of economic self-sufficiency;
  • Forced impoverishment;
  • Prejudice that views people with intellectual and/or developmental disabilities as unworthy of progressive public policies and related public funding; and
  • The presence of other factors that, in combination with intellectual and/or developmental disabilities, expose them to increased risk of rights violations. These factors include: age; gender; race/ethnicity; sexual orientation; cultural, linguistic, geographic, or spiritual diversity; economic status; severity of disability; intensity of needed supports; and others.

POSITION

All people with intellectual and/or developmental disabilities are entitled to human and civil rights. Given that all people with intellectual and/or developmental disabilities are complex human beings with varying attributes and living circumstances, and many experience multiple risk factors for human and civil rights violations, we emphasize that all are entitled to human and civil rights regardless of age, gender, race/ethnicity, sexual orientation, cultural, linguistic, geographic, and spiritual diversity, economic status, severity of disability, intensity of needed supports, or other factors that expose them to increased risk of rights violations.

These rights include the rights to autonomy, dignity, family, justice, life, liberty, equality, self-determination, community participation, property, health, well-being, access to voting, and equality of opportunity and others recognized by law or international declarations, conventions, or standards. All people with intellectual and/or developmental disabilities must have the right to supports they need to exercise and ensure their human and civil rights. Local, state, federal, and international governments must strongly enforce all human and civil rights.

 

Rev’d 2015
Joint statement with the American Association on Intellectual and Developmental Disabilities (AAIDD).

1“People with intellectual disability and/or developmental disabilities” refers to those defined by the AAIDD classification and DSM IV. In everyday language they are frequently referred to as people with cognitive, intellectual and/or developmental disabilities although the professional and legal definitions of those terms both include others and exclude some defined by DSM IV.

A rear-facing defendant speaks to a judge with his attorney beside him
Criminal Justice System/in /by
People with intellectual and/or developmental disabilities1 (I/DD) have the right to justice and fair treatment in all areas of the criminal justice system and must be afforded the supports and accommodations required to make justice and fair treatment a reality.

ISSUE

When individuals with intellectual and/or developmental disabilities become involved in the criminal justice system as victims, witnesses, suspects, defendants, or incarcerated individuals, they face fear, prejudice, and lack of understanding. Attorneys, judges, law enforcement personnel (including school-based security officers), first responders, forensic evaluators, victim advocates, court personnel, correctional personnel, criminal justice policy-makers, and jurors may lack accurate and appropriate knowledge to apply standards of due process in a manner that provides justice for individuals with I/DD. These individuals are:

  • Unrecognized as having a disability. Individuals with I/DD are frequently undiagnosed or misdiagnosed, especially by evaluators, including law enforcement personnel, who are not trained in assessment of individuals with intellectual disability and who do not recognize common characteristics such as individuals’ attempts to hide their disability. Defendants with I/DD are often denied a fair evaluation of whether they are entitled to legal protection as having I/DD on the basis of false stereotypes about what individuals with I/DD can and cannot understand or do;
  • Victimized at high rates. Individuals with I/DD are significantly more likely to be victimized (at least two times more likely for violent crimes and four to ten times for abuse and other crimes), yet their cases are rarely investigated or prosecuted because of discrimination, devaluation, prejudice that they are not worthy of protection, and mistaken stereotypes that none can be competent witnesses. Their victimization comes in many forms including violence, oppression, financial exploitation, sexual exploitation, and human trafficking;
  • Denied redress. Individuals with I/DD are subject to routine denial of opportunities for legal redress because of outdated and stereotyped views of their credibility, their competence to testify, or their need for advocacy, supports, and accommodations;
  • Denied due process. Individuals with I/DD are often denied due process and effective, knowledgeable advocacy and legal representation at each stage of the proceedings; and
  • Discriminated against in sentencing, confinement, and release. Individuals with I/DD are subject to abuse and exploitation when incarcerated and denied either alternatives to incarceration or appropriate habilitation programs that would address their intellectual disability, and/or behavior, and help them return safely to the community. When incarcerated, individuals with I/DD often serve extended time because they do not understand or cannot meet steps to reduce time and secure an earlier release.

When individuals with I/DD or their families come into contact with the criminal justice system, they find few organized resources for information, training, technical assistance, referral, and supports. Moreover, people living with I/DD who enter the criminal justice system encounter unique problems not faced by their nondisabled peers, such as:

  • Failing to have their disability correctly identified by authorities who lack the expertise to discern the presence and nature of their disability (especially when the disability is denied by the person or somewhat hidden);
  • Giving incriminating statements or false “confessions” because the individual is manipulated, coerced, misled, confused by either conventional or inappropriately used investigative techniques, or desires to please the questioner;
  • Experiencing inappropriate assessments for competency to stand trial even when the individual cannot understand the criminal justice proceeding or is unable to assist their lawyer in their own defense;
  • Being inappropriately placed in long-term institutions and subject to inappropriate one-size-fits-all “competency training” designed for people with other disabilities or no disabilities; and
  • “Waiving” rights unknowingly when warnings such as Miranda are given without accommodating the person’s I/DD.

While the Supreme Court ruled in Atkins v. Virginia2 that it is a violation of the Eighth Amendment ban on cruel and unusual punishment to execute people with intellectual disability, states continue to play a major role in applying the term and in deciding the process for consideration of a defendant’s intellectual disability. Laws vary from state to state on how a defendant proves the presence of intellectual disability. States also vary widely regarding whether it is the judge or jury who decides if the defendant has intellectual disability. States sometimes inappropriately appoint people who are not knowledgeable about intellectual disability to conduct “assessments” for intellectual disability or to offer “a diagnosis” that they are not professionally trained or qualified to provide. As a result, defendants may not have their intellectual disability correctly identified because of a state’s unfair and inaccurate procedures. The Supreme Court ruled again in Hall v. Florida3 in 2014, reaffirming the Atkins decision and denying states’ use of strict IQ cutoffs to diagnose intellectual disability.

POSITION

People with intellectual and/or developmental disabilities must receive justice in the criminal justice system, whether as victims, witnesses, suspects, defendants, or incarcerated individuals.

As victims, witnesses, suspects, defendants, or incarcerated individuals, they must:

  • Be protected by laws and policies that ensure their right to justice and fair treatment;
  • Be treated fairly by personnel who are knowledgeable and trained about I/DD, including all attorneys (prosecution and defense), judges, law enforcement personnel (including school-based security officers), first responders, forensic evaluators, victim advocates, court personnel, correctional personnel, criminal justice policy-makers, and jurors;
  • Be informed about and have access to appropriate sentencing alternatives to incarceration, and be provided the supports and accommodations to enter alternatives;
  • Receive supports and accommodations to effectively participate in all stages of legal proceedings for which they are competent;
  • Have necessary supports and accommodations available so that their testimony is heard and fairly considered when they are victims;
  • Have access to victim supports and compensation as appropriate;
  • Have access to, and the right to present, expert evaluations and testimony by professionals with training, experience, and expertise in their disability;
  • Have an advocate, in addition to their lawyer, who has specialized, disability- related expertise;
  • Have their conversations with their advocate covered under, or treated similarly to, attorney-client privilege; and
  • As a suspect, be protected from harm, self-incrimination, and exploitation at all stages of an investigation and prosecution, including when they are questioned, detained, and incarcerated.

When sentenced, individuals with I/DD also must:

  • Have available reasonable and appropriate supports, accommodations, treatment, and education, as well as alternatives to sentencing and incarceration that include community-based corrections; and
  • Have access to well-trained probation and parole officers who will treat them fairly based on their individual disability and their need for the supports and accommodations necessary to re-enter society, including those that will enable people to re-establish Medicaid Waiver services, SSI, housing, education, and job supports.

When death penalty is an issue, individuals with intellectual disability also must:

  • Continue to be exempt from the death penalty because existing case-by-case determinations of competence to stand trial, criminal responsibility, and mitigating factors at sentencing have proved insufficient to protect the rights of individuals with intellectual disability;
  • Have access to expert witnesses and professionals who are knowledgeable about, as well as trained and experienced in, intellectual disability and who can accurately determine the presence and effects of intellectual disability; and
  • Have their intellectual disability determined by state procedures that are accurate and fair. Those state procedures must be consistent with the national standards on making an intellectual disability determination and ensure that people with intellectual disability are not executed.

 

Rev’d 2014
Joint statement with the American Association on Intellectual and Developmental Disabilities (AAIDD).

1“People with intellectual disability (ID)” refers to those with “significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills. This disability originates before age 18,” as defined by the American Association on Intellectual and Developmental Disabilities (AAIDD) in its manual, Intellectual Disability: Definition, Classification, and Systems of Supports (Schalock et al., 2010), and the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5), published by the American Psychiatric Association (APA, 2013). “People with developmental disabilities (DD)” refers to those with “a severe, chronic disability of an individual that- (i) is attributable to a mental or physical impairment or combination of mental and physical impairments; (ii) is manifested before the individual attains age 22; (iii) is likely to continue indefinitely; (iv) results in substantial functional limitations in 3 or more of the following areas of major life activity: (I) Self-care, (II) Receptive and expressive language, (III) Learning, (IV) Mobility, (V) Self-direction, (VI) Capacity for independent living, (VII) Economic self-sufficiency; and (v) reflects the individual’s need for a combination and sequence of special, interdisciplinary, or generic services, individualized supports, or other forms of assistance that are of lifelong or extended duration and are individually planned and coordinated,” as defined by the Developmental Disabilities Assistance and Bill of Rights Act 2000. In everyday language, people with ID and/or DD are frequently referred to as people with cognitive, intellectual and/or developmental disabilities.

2Atkins v. Virginia, 536 U.S. 304 (2002). The term “mental retardation” was used in the Atkins decision banning execution of people with intellectual disability (ID) and, though outdated, was still used in some state legal and criminal justice systems until the U.S. Supreme Court’s decision in Hall v. Florida. The outdated term has appeared, therefore, in many legal decisions and briefs, including amicus (“friend of the court”) briefs. The Arc and AAIDD support the modern terminology of ID and urge courts to follow the Supreme Court’s lead in adopting this modern terminology.

3Hall v. Florida, 134 S. Ct. 1986 (2014).

An elderly couple with disabilities. The man is kissing the woman's cheek and she smiles sheepishly off to the side.
Autonomy, Decision-Making Supports, and Guardianship/in /by
All individuals with intellectual and/or developmental disabilities1 (I/DD) have the right to recognition as persons before the law and to enjoy legal capacity on an equal basis with individuals who do not have disabilities in all aspects of life (United Nations Convention on the Rights of Persons with Disabilities (UN CRPD), 2006). The personal autonomy, liberty, freedom, and dignity of each individual with I/DD must be respected and supported. Legally, each individual adult or emancipated minor is presumed competent to make decisions for himself or herself, and each individual with I/DD should receive the preparation, opportunities, and decision-making supports to develop as a decision-maker over the course of his or her lifetime.

ISSUE

  • Current trends presume the decision-making capacity of individuals with I/DD and the preservation of legal capacity as a priority for all people needing assistance with decision-making.
  • Like their peers without disabilities, individuals with I/DD must be presumed competent; they must also be assisted to develop as decision-makers through education, supports, and life experience. Communication challenges should not be misinterpreted as lack of competency to make decisions.
  • Individuals with I/DD should have access to supports and experiences to learn decision- making skills from an early age and throughout their lifetimes in educational and adult life service systems.
  • Families should have access to information about all options for assisting their family member to make decisions over the life course.
  • All people, with and without disabilities, have a variety of formal and informal processes available to enact their decisions and preferences, including healthcare proxies and advance directives.
  • Less restrictive means of decision-making supports (e.g., health-care proxies, advance directives, supported decision-making, powers of attorney, notarized statements, representation agreements, etc.) should be tried and found to be ineffective in ensuring the individual’s decision-making capacity before use of guardianship2 as an option is considered.
  • Where judges and lawyers lack knowledge about people with I/DD and their human rights, poor advocacy and tragic legal outcomes often result. Financial incentives frequently benefit professionals and guardianship corporations, often to the detriment of individuals with I/DD and their families.
  • Serving in the dual roles of guardian and paid service provider or paid advocate creates a conflict of interest or the appearance of a conflict of interest. Such conflicts must be mitigated or avoided.
  • Some statutory privacy measures have made it more difficult for those assisting other individuals to have access to their records, make decisions, or both. Thus, to obtain or modify needed medical care, services, and supports, an individual with I/DD may be adjudicated to be incompetent and subjected to guardianship. This result conflicts with the legal presumption of competence and with principles of autonomy, decision-making supports, presumption of competence, and the use of less restrictive alternatives.

The appointment of a guardian is a serious matter for three reasons:

  1. It limits an individual’s autonomy, that is, the individual’s agency over how to live and from whom to receive supports to carry out that choice;
  2. It transfers the individual’s rights of autonomy to another individual or entity, a guardian; and
  3. Many individuals with I/DD experience guardianship as stigmatizing and inconsistent with their exercise of adult roles and responsibilities.

POSITION

The primary goals in assisting individuals with I/DD should be to assure and provide supports for their personal autonomy and ensure equality of opportunity, full participation, independent living, and economic self-sufficiency (Americans with Disabilities Act, 1990, section 12101 (a)(7); Individuals with Disabilities Education Act, 2004, section 1400 (c)(1)).

Each individual adult and emancipated minor is legally presumed competent to make decisions for himself or herself and should receive the preparation, opportunities, and decision-making supports to develop as a decision-maker over the course of his or her lifetime. All people with I/DD can participate in their own affairs with supports, assistance, and guidance from others, such as family and friends. People with I/DD should be aware of and have access to decision-making supports for their preferred alternatives.

  • If legal limitations on autonomy are necessary, then National Guardianship Association or equivalent standards that are consistent with the values expressed in this position statement should be followed. If any restrictions on autonomy are legally imposed, each individual has the right to the least restrictive alternative, due process protections, periodic review, ongoing training and supports to enhance autonomy and reduce reliance on approaches that restrict individual rights, and the right to ultimately seek to restore rights and terminate the restriction when possible.
  • Information and training about less restrictive alternatives to guardianship should be available to people with I/DD, their family members, attorneys, judges, and other professionals.
  • If the use of a guardianship becomes necessary, it should be limited to the fewest restrictions necessary for the shortest amount of time and tailored to the individual’s specific capacities and needs.
  • Strict monitoring must be in place to promote and protect the autonomy, liberty, freedom, dignity, and preferences of each individual even when placed under guardianship.
  • Regardless of their guardianship status, all individuals with I/DD should be afforded opportunities to participate to the maximum extent possible in making and executing decisions about themselves. Guardians should engage individuals in the decision- making process, ensuring that their preferences and desires are known, considered, and achieved to the fullest extent possible.
  • Regardless of their guardianship status, all individuals with I/DD retain their fundamental civil and human rights (such as the right to vote and the right to make decisions related to sexual activity, marriage and divorce, birth control, and sterilization) unless the specific right is explicitly limited by court order.

Systems Issues

  • States should provide systematic access to decision-making supports for all individuals with I/DD.
  • An individual (other than a family member) should not serve in dual roles as guardian and as paid advocate or paid service provider for an individual.
  • An organization should avoid serving in dual roles as guardian and as paid advocate or paid service provider for an individual.
  • Organizations that serve in dual roles of guardian and paid advocate or paid service provider must have written policies and organizational separations in place to mitigate conflicts of interest. These organizations should support efforts to develop independent guardianship organizations.
  • Financial incentives that benefit professionals or guardianship corporations should never drive guardianship policy or result in expensive and unnecessary costs to individuals or their families.
  • Appointment of a guardian of the person, the person’s finances, or both, should be made only to the extent necessary for the legal protection and welfare of the individual and not for the convenience or preferences of the family, the service system, or others.
  • Individuals with I/DD must have access to all the accommodations and supports, including communication supports, they need to demonstrate their competency at initial evaluations for guardianship and at all periodic reviews of any guardianship.
  • State laws should be reformed to prioritize less restrictive alternatives to full and plenary guardianship, including without limitation informal supports, supported decision- making, limited (and revocable) powers of attorney, health care proxies, trusts, and limited guardianships that are specifically tailored to the individual’s capacities and needs. These alternatives should always be considered first. Use of these alternatives can help an individual who may have limited capacity to consent to satisfy statutory privacy or other requirements and to have records released to a person or entity designated as the individual’s agent or provider of support and services. If used at all, any restrictions on the individual’s rights and decision-making powers should be confined to those areas in which the individual demonstrates a need for assistance that exceeds what can be provided through a less restrictive alternative.
  • Laws should be reformed to require that less restrictive options are tried and found to be ineffective to ensure the individual’s autonomy before full (plenary) guardianship is even considered. Alternatives and related procedures to change overly restrictive forms of any existing guardianship, including restoration of rights and termination of any guardianship, must be available under state law.
  • Since guardianship represents a transfer of rights and the responsibility for exercising them, adequate safeguards must be in place to protect those rights. These safeguards include procedural due process (including without limitation the right to counsel representing the interests of the individual, impartial hearing, appeal, and burden and quantity of proof) must protect the individual’s autonomy. The state must also ensure that the individual is informed and retains as much decision-making power as possible. The state should pay the costs of providing these due process protections and not impose the costs on families or on individuals with I/DD.
  • Members of the judiciary, attorneys, and other professionals need training and education on alternatives to guardianship for individuals with I/DD, and they must zealously advocate for preserving the substantive and procedural rights of all individuals with I/DD.
  • If a guardian is to be appointed, the preferences and assent of the individual with I/DD with respect to the identity and function of the proposed guardian should be considered.
  • The appointment of a guardian should be appropriately time-limited in order to provide regular periodic review of the individual’s current capabilities and functioning and whether a less restrictive alternative is now indicated. The reviews should include an independent professional assessment by a highly qualified examiner of the individual’s functioning with necessary accommodations and communication supports. All costs of the review should be paid by the state and not imposed on individuals with I/DD or their families.
  • Guardianship should include a person-centered plan of teaching and/or supports for decision making so the individual with I/DD will have opportunities to learn and practice the skills needed to be autonomous and to direct his or her own life. Understanding the nature and purpose of guardianship and understanding that most people with I/DD can manage their own affairs with assistance and guidance should be part of transition planning in schools and of any curriculum or procedures that prepare the individual’s person-centered plan for adulthood. Schools should not give legal advice to students and families, and should provide students and families with information about less restrictive alternatives to guardianship.
  • The ultimate goal of any such curriculum or procedures should be to ensure the individual’s autonomy to the maximum extent possible, individualize decision-making supports for the individual, and ensure that the individual has maximum access to equal opportunity, independent living, full participation, and economic self-sufficiency, each with supports that take into account the individual’s capacities and needs.

Guardian Responsibilities 

  • Guardians should be knowledgeable about decision-making and other types of supports, services, and systems that can significantly affect the individual’s autonomy, supports, and quality of life. Moreover, guardians must be committed to the individual’s well- being and avoid any appearance or actual lack of commitment to the individual. They must know and understand the individual’s needs and wishes and act in accordance with them whenever possible and whenever any action will not negatively affect the individual’s health, safety, financial security, and other welfare. Family members are often preferable choices when a guardianship is ordered and the family members meet these standards of knowledge, they do not have conflicts of interest (other than also serving as a paid advocate or paid service provider), and the individual with I/DD does not object to the family member’s appointment as guardian.
  • Guardians shall defer to the individual’s preferences when decisions do not jeopardize the individual’s health, safety, financial security, and other welfare.

Oversight

  • States should adopt a set of minimum standards for all guardians and require training and technical assistance for all guardians.
  • Professional guardians (those who both serve two or more people who are not related to each other and also receive fees for these services) should, at a minimum, be registered, and preferably licensed or certified by the state, either directly or through delegation to an appropriate independent professional organization. They should also have the appropriate education and skills. They should be independent from and not be receiving payment for providing other services to the individual.
  • Guardians shall be legally accountable for all of their decisions and other actions with respect to the individual. Their decisions and other actions must be subject to the reporting and review procedures of the appropriate state court or other agency.

 

Rev’d 2016
Joint statement with the American Association on Intellectual and Developmental Disabilities (AAIDD).

1“People with intellectual disability (ID)” refers to those with “significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills. This disability originates before age 18,” as defined by the American Association on Intellectual and Developmental Disabilities (AAIDD) in its manual, Intellectual Disability: Definition, Classification, and Systems of Supports (Schalock et al., 2010), and the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5), published by the American Psychiatric Association (APA, 2013). “People with developmental disabilities (DD)” refers to those with “a severe, chronic disability of an individual that- (i) is attributable to a mental or physical impairment or combination of mental and physical impairments; (ii) is manifested before the individual attains age 22; (iii) is likely to continue indefinitely; (iv) results in substantial functional limitations in 3 or more of the following areas of major life activity: (I) Self-care, (II) Receptive and expressive language, (III) Learning, (IV) Mobility, (V) Self-direction, (VI) Capacity for independent living, (VII) Economic self-sufficiency; and (v) reflects the individual’s need for a combination and sequence of special, interdisciplinary, or generic services, individualized supports, or other forms of assistance that are of lifelong or extended duration and are individually planned and coordinated,” as defined by the Developmental Disabilities Assistance and Bill of Rights Act 2000. In everyday language people with ID and/or DD are frequently referred to as people with cognitive, intellectual and/or developmental disabilities.

2Terminology for guardianship and guardians differs by state and can include tutor, conservator, curator, or other comparable terms.

Advocacy/in /by

Advocacy is vital to ensuring the quality of life for people with intellectual and other developmental disabilities. Advocacy must take place at both the individual and system levels, including entities critical to the achievement of positive outcomes for people with intellectual and other developmental disabilities.

It is The Arc New York’s position that:

  • Individuals with intellectual and other developmental disabilities have the right to participate in decisions about their lives and advocate for public policy which provides the systems and supports they need to participate fully in society.
  • All self-advocates must be supported, educated, and provided with the information and tools necessary for effective advocacy efforts.
  • Families can be effective advocates for their family members. To be successful, they must have access to family support services, parent and sibling groups, information and referral, network and advocacy assistance and training.
  • Any advocate must be knowledgeable about how to access protection under federal, state and local laws and regulations.
  • Advocacy must be designed, adequately funded, staffed and implemented to ensure that services and supports are available to all individuals and their families who need them.
  • Advocacy efforts include the following:
    – Training in rights and advocacy skills,
    – Information and counseling on how to solve problems, including:
    – Referral of individuals to service agencies,
    – Appropriate mediation where necessary, and
    – Collaborating with community partners within and outside of the state.
    – Taking legal and other action, including class action litigation, to assert the rights of an individual or group;
    – Initiating investigations as needed; and
    – Influencing public policy decisions through direct education and information sharing with elected officials and governmental regulatory and funding entities.
A group of conference attendees poses together, all wearing nametags clipped to their shirts
Rights Summary/in /by
People with intellectual and/or developmental disabilities1 (I/DD) have the same basic legal, civil, and human rights as other citizens. They may need accommodation, protection, and support to enable them to exercise these rights. Their rights should never be limited or restricted without due process

ADVOCACY

Advocacy on the individual or systems level is acting with or on behalf of an individual or group to resolve an issue, obtain a needed support or service or promote a change in the practices, policies and/or behaviors of third parties. Advocacy is essential for promoting and protecting the civil and human rights of people with intellectual and/or developmental disabilities and for establishing, maintaining or improving their quality of life.

AUTONOMY, DECISION-MAKING SUPPORTS, AND GUARDIANSHIP

All individuals with intellectual and/or developmental disabilities have the right to recognition as persons before the law and to enjoy legal capacity on an equal basis with individuals who do not have disabilities in all aspects of life (United Nations Convention on the Rights of Persons with Disabilities (UN CRPD), 2006). The personal autonomy, liberty, freedom, and dignity of each individual with I/DD must be respected and supported. Legally, each individual adult or emancipated minor is presumed competent to make decisions for himself or herself, and each individual with I/DD should receive the preparation, opportunities, and decision-making supports to develop as a decision-maker over the course of his or her lifetime.

CRIMINAL JUSTICE SYSTEM

People with intellectual and/or developmental disabilities have the right to justice and fair treatment in all areas of the criminal justice system and must be afforded the supports and accommodations required to make justice and fair treatment a reality.

HUMAN AND CIVIL RIGHTS

The human and civil rights of all people with intellectual and/or developmental disabilities must be honored, protected, communicated, enforced and thus be central to all advocacy on their behalf.

INCLUSION

All people with intellectual and/or developmental disabilities benefit when fully included in community life.

PHYSICIAN-ASSISTED SUICIDE

Physician-assisted suicide must be prohibited for people with intellectual disability (ID) due to the inherent risk of undue influence.

PROTECTION FROM MISTREATMENT

People with intellectual and/or developmental disabilities must be free from abuse, neglect, or any kind of mistreatment.

SELF-ADVOCACY

People with intellectual and/or developmental disabilities must have the right to and be supported to act as self-advocates. Self-advocates exercise their rights as citizens by communicating for and representing themselves, with supports in doing so, as necessary. This means they have a say in decision-making in all areas of their daily lives and in public policy decisions that affect them.

SELF-DETERMINATION

People with intellectual and/or developmental disabilities have the same right to, and responsibilities that accompany, self-determination as everyone else. They are entitled to opportunities, respectful support, and the authority to exert control in their lives, to direct their services, and to act on their own behalf.

 

1People with intellectual disability (ID)” refers to those with “significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills. This disability originates before age 18,” as defined by the American Association on Intellectual and Developmental Disabilities (AAIDD) in its manual, Intellectual Disability: Definition, Classification, and Systems of Supports (Schalock et al., 2010), and the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5), published by the American Psychiatric Association (APA, 2013). “People with developmental disabilities (DD)” refers to those with “a severe, chronic disability of an individual that- (i) is attributable to a mental or physical impairment or combination of mental and physical impairments; (ii) is manifested before the individual attains age 22; (iii) is likely to continue indefinitely; (iv) results in substantial functional limitations in three or more of the following areas of major life activity: (I) Self-care, (II) Receptive and expressive language, (III) Learning, (IV) Mobility, (V) Self-direction, (VI) Capacity for independent living, (VII) Economic self-sufficiency; and (v) reflects the individual’s need for a combination and sequence of special, interdisciplinary, or generic services, individualized supports, or other forms of assistance that are of lifelong or extended duration and are individually planned and coordinated,” as defined by the Developmental Disabilities Assistance and Bill of Rights Act 2000. In everyday language, people with ID and/or DD are frequently referred to as people with cognitive, intellectual and/or developmental disabilities.