Black father and son smile together outside
Anti-Racism/in /by The Arc
Racism is the systemic prejudice, discrimination, or antagonism directed towards a person or people based on their membership in a particular racial or ethnic group, typically one that is a minority or marginalized. Anti-racism means being committed to the daily work of identifying and disrupting racism in both its implicit and explicit manifestations. This includes looking at public policy work with an intersectional lens, considering the intentional or unintentional impact upon people of color with intellectual and/or developmental disabilities1 (IDD). It also includes partnering with all Black, Indigenous, and people of color with IDD because they are uniquely capable of providing the leadership required to truly address issues at the intersection of disability and racial justice.

ISSUE

Today, as throughout history, racism is embedded at the individual, institutional, and structural levels of society. To be anti-racist is to actively identify these embodiments and work to reverse and repair them. The first step in being anti-racist is acknowledging how biases can be intentional, unconscious, or unintentional. It is also critical to acknowledge that people with multiple marginalized identities experience complex challenges because of their intersectional identities. People of color with IDD face more profound challenges because of historical and current barriers. Some examples of these challenges include:

  • Inequity in Education: Children of color are more likely than their White peers to be identified with a disability in schools with a majority White census but are substantially under-identified in schools that have high percentages of students of color. Additionally, Black students are more likely to be misdiagnosed or categorized with an intellectual disability or emotional disturbance, while more accurate diagnoses of learning disabilities, autism, or speech/language impairment remain unrecognized. Students of color are also more likely to be restrained and secluded. They are more likely to be placed in a restrictive classroom setting than their White peers.
  • Disproportionate interactions with the criminal legal system: Law enforcement disproportionately interacts with people of color. People with disabilities are overrepresented amongst those who are injured or killed by law enforcement. The lack of a crisis response system that can serve people with IDD and people with co-occurring IDD and mental health disabilities contributes to these horrific instances. In schools, the presence of school resource officers and other law enforcement agents often lends to the unnecessary and harmful criminalization of students of color with disabilities, as early as elementary school. Threat assessment teams target those same students for behaviors related to their disabilities. These early interactions compound the likelihood that people of color with disabilities will be forced into the criminal legal system, contributing to the preschool to prison pipeline.
  • Systemic Health Inequities and Access to Health Care Services: People of color experience far more barriers to quality health care and health insurance than White Americans, systemically leading to negative health outcomes. On average, communities of color experience a significantly higher incidence of chronic health conditions. People with IDD are already more likely to develop common health conditions such as high cholesterol, high blood pressure, cardiovascular disease, obesity, and diabetes; rates are even higher for people of color with IDD. Additionally, people of color have historically experienced a breakdown of trust with health care providers because of inequities in access and the provision of services. Studies have demonstrated that many health care providers carry implicit biases towards people of color, perhaps most shockingly demonstrated in the mortality and morbidity rates of Black mothers in childbirth. These mothers are more likely to develop a disability and are more likely to give birth to premature babies who, if they survive, often develop chronic complex medical conditions. A history of sterilization of people with disabilities, including a disproportionate number of people of color with disabilities, as well as illicit medical experimentation involving people of color, has increased distrust. Other systemic gaps, such as a lack of accessible transportation in Tribal and other areas, has kept people of color from getting the care they need.
  • Housing Discrimination: Historically, many people with disabilities, especially those with the highest needs, were forced to live in large, congregate residential treatment institutions that isolated the residents from the rest of society. These facilities also discriminated on the basis of race and treated people of color with disabilities differently. People of color with disabilities continue to face the risk of institutionalization in the modern versions of these facilities and face housing discrimination when they seek homes in communities of their choosing. People of color have been excluded from housing through block-by-block segregation, restrictive covenants, redlining, and racially targeted subprime loans, along with other discriminatory practices. The current greater rates of housing insecurity for communities of color are a legacy of these practices, many of which continue to this day. They are compounded for people of color with disabilities who might also need wheelchair access or deaf-accessible housing. Black and Latino renters are more likely than any other group to face eviction.
  • Socioeconomic Inequalities: People of color with IDD face compounded barriers to financial independence through employment discrimination, barriers to banking services, medical debt, geographic food deserts, and exposure to unsafe housing (such as lead poisoning), and environmental racism (such as disproportionate rates of asthma and lung disabilities for families of color living in high pollution areas). These historical factors all prevent people of color from building wealth and disproportionately impact the generational wealth of families of color, especially those with family members with IDD.

POSITION

To be anti-racist, all policy reform efforts must include the voices of and perspective of people of color with disabilities. Policy work then must move forward to enact necessary changes with and in support of the efforts of people of color and disability-led organizations. To do this work, policy and advocacy efforts must:

  • Acknowledge the impacts that racism and the intersectional aspects of racism have had on existing systems.
  • Acknowledge the role that all organizations, including our own, have in perpetuating racist systems and structures.
  • Analyze and identify specifically racist structures and biases that impact people of color with IDD.
  • Actively advocate in response to circumstances that have a significant impact on people of color with IDD.
  • Engage people of color from diverse communities in ways that are culturally respectful and intentional, ensuring that they are present, heard, and supported at every level of leadership and in all federal policy work.
  • Prioritize efforts to eliminate racist barriers, systems, and biases, including reversing the impacts of historical discrimination, while working towards collective access.
  • Demonstrate a commitment to cross-disability solidarity by ensuring that each person, regardless of their disability, has an option to be a part of the disability justice movement.
  • Support efforts of people of color with disabilities and the disability and racial justice movements.
  • Examine internal priorities and efforts continually to ensure they are actively anti-racist.

Rev’d 2022
Joint statement with the American Association on Intellectual and Developmental Disabilities (AAIDD).

1Intellectual Disability (ID) is a lifelong condition where significant limitations in both intellectual functioning and adaptive behavior emerge during the developmental period (before adulthood).

Developmental Disabilities (DD), first defined in 1975 federal legislation now known as “The DD Act”, are a group of lifelong conditions that emerge during the developmental period and result in some level of functional limitation in learning, language, communication, cognition, behavior, socialization, or mobility. The most common DD conditions are intellectual disability, Down syndrome, autism, cerebral palsy, spina bifida, fetal alcohol syndrome, and fragile X syndrome.

The acronym “IDD” is used to describe a group that includes either people with both ID and another DD or a group that includes people with ID or another DD. The supports that people with IDD need to meet their goals vary in intensity from intermittent to pervasive.

Portrait of a smiling young woman in a red top
Self-Determination/in /by The Arc
People with intellectual and/or developmental disabilities1 (IDD) 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.

ISSUE

Historically, many individuals with IDD have been denied their right to self-determination. They have not had the opportunity or the supports to make choices and decisions about important aspects of their lives. Instead, they have often been overprotected and involuntarily segregated, with others making decisions about key elements of their lives. For many, the absence of the dignity of risk and opportunities to make choices has impeded people with IDD from exercising their right of self-determination and has inhibited their ability to become contributing, valued, and respected members of their communities, living lives of their own choosing.

POSITION

People with IDD have the same right to self-determination as all people and are entitled to the freedom, authority, and supports to exercise control over their lives. People with IDD must understand that they can direct and influence circumstances that are important to them. This right to self-determination exists regardless of guardianship status.

Family members, friends, and other allies play a critical role in promoting self- determination by providing supports and working collaboratively to achieve the individual’s goals. Families, friends, and other allies should understand, recognize, and promote the rights and responsibilities of self-determination and respect the limitations on their own authority. Service providers, educators, and substitute decision-makers must recognize and respect the individual’s right to self-determination and the limitations on their authority.

To this end, people with IDD must be able:

  • In their personal lives to:
    • lead in decision-making and problem-solving about all aspects of their lives and have the supports they want to make decisions;
    • advocate for themselves with the assurance that their desires, interests, and preferences will be respected and honored;
    • choose their own supporters, friends, and allies;
    • direct their own supports and services and allocate available resources;
    • hire, train, manage, and fire their own staff;
    • acquire additional skills to assist in determining the course of their lives;
    • use adaptive communications devices and other assistive technology; and
    • take risks to achieve the lives they desire.
  • In their community lives to:
    • participate fully and meaningfully in the community;
    • receive the necessary supports and assistance to vote and exercise other rights as citizens.
    • become valued members and leaders of the community;
    • serve as active members and leaders of community boards, advisory councils, and other organizations;
    • take leadership roles in setting the policy direction for the self-determination movement; and
    • have representation and meaningful involvement in policy-making at the federal, state, and local levels.

Recognition of the right to self-determination must be a priority. The principles of self- determination and opportunities to promote self-determination must be incorporated into conferences, publications, advocacy, training, services, policies, and research in the IDD community.

Laws, regulations, policies, procedures, and funding systems should be regularly reviewed and revised to remove barriers and to promote self-determination. People with IDD must be involved in this process at all levels.

 

Rev’d 2018
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.

A young man wearing glasses smiles at the camera, waving
Self-Advocacy and Leadership/in /by The Arc
People with intellectual and/or developmental disabilities1 (IDD) have the right to advocate and/or be supported to act as self-advocates. Self-advocates exercise their rights as citizens by communicating for and representing themselves and others, with whatever supports they need. Self-advocates must have a meaningful role in decision-making in all areas of their daily lives and in public policy decisions that affect people with IDD.

ISSUE

People with IDD have been isolated and segregated from their communities, and presumed incompetent, resulting in loss and denial of basic human rights and discrimination in almost all areas of personal and community life. Through self-advocacy, people with IDD will have more impact on their own situations and on the public policies that affect them.

The self-advocacy movement has been critically important in supporting people with IDD to learn about self-advocacy skills and other topics, including:

  • Civil rights, including the right to vote, the right to integrated services and supports, and self-determination;
  • Self-confidence and development of leadership skills;
  • Successful story-telling;
  • Public speaking;
  • Problem-solving techniques;
  • Participation in group decision-making; and
  • Involvement on boards and task forces and with policymakers at the local, state, and national level.

There are many ways for people with IDD to act as advocates, including individual self-advocacy for the individual services and supports that they or another person with IDD needs, as well as policy advocacy for the funding, services, and rights that impact people with IDD at the local, state, and national level.

POSITION

People with IDD must have the right to advocate for themselves and others. People with IDD have the right to speak or act on their own behalf and alongside other people with disabilities, whether the issue is individual or related to broader public policy. Recognizing these rights in a respectful partnership between people with and without disabilities can lead to better outcomes and better lives for everyone.

Self-advocates provide important knowledge, experience, and skills that individuals, organizations, and government agencies need in order to effectively support the needs of and enhance the lives of people with IDD. To promote this participation, it is critical to acknowledge the important role that self-advocates play in developing leadership skills and increasing people’s pride, influence, and opportunities. To achieve this partnership between self-advocates and their support persons or organizations, the following must occur:

  • People with IDD must have the power to make informed decisions about their own lives and the services they receive, including those who need support and those who have legally appointed guardians.
  • People with IDD have access to necessary accommodations and supports in order to meaningfully participate in meetings, conferences, task forces, boards, and other forums when issues and policies that are important to them are discussed (“Nothing about us without us” principle). These accommodations include but are not limited to:
    • Extra time planned for meetings to ensure the participation of each person;
    • Enhanced and alternative communication methods, such as communication devices, sign language, or interpreters;
    • Availability of technology supports and access through technology to ensure participation;
    • Materials provided ahead of the meeting for review;
    • Meeting materials written in plain language;
    • Support from direct support professionals, when needed; and
    • Funding for transportation and travel-related costs, including support staff
  • When communicating with or about people with IDD, it is important to respect the way that people with disabilities prefer to be identified. In most circumstances, person-first language is most appropriate, e.g. person with IDD. However, some people with IDD prefer identity-first language, e.g. autistic person. In addition, people’s self-identified pronouns for gender identity must be respected.
  • Policy development must include self-advocates and be regularly evaluated to ensure that self-advocates are actively and meaningfully participating.
  • Families, advocacy organizations, service providers, and government agencies must work with self-advocates to increase public awareness of the importance of the self-advocacy movement.
  • Self-advocacy organizations and individual self-advocates must be supported to develop and sustain the self-advocacy movement, including mentoring youth and young adults with IDD to become self-advocates.
  • Foundations and federal, state, and local funding agencies must promote self-advocacy as a key matter of policy. These entities must provide enough money and resources to make sure that (1) people with IDD have accessible information, training, and education in self-advocacy, and (2) providers have the information they need to deliver person-centered services that address self-advocate-led trends in policy and design.
  • Children and youth with IDD must be supported by families, schools, direct service providers, and other entities to learn self-advocacy skills and put these skills into practice. Children and youth with IDD should have opportunities to use advocacy skills in educational planning, including Individualized Education Programs (IEPs), transition plans, and all decision-making.
  • Adults with IDD can be effectively supported by peers, self-advocates, families, direct service providers, and other entities to learn self-advocacy skills and put them into practice. In order to continually use these skills, adults with IDD should have opportunities to use self-advocacy skills in service planning and daily decision-making.
  • Self-advocates must be afforded the same dignity of risk that all people have to make informed decisions and learn from any mistakes that impact themselves and others in the community.
  • Self-advocates must be included on boards and other advisory bodies for disability advocacy organizations, service providers, and agencies who serve people with IDD, as well as encouraged to meaningfully provide input on the policies, programs, and evaluation methods of those organizations and agencies.

Rev’d 2020
Joint statement with the American Association on Intellectual and Developmental Disabilities (AAIDD).

1Intellectual Disability (ID) is a lifelong condition where significant limitations in both intellectual functioning and adaptive behavior emerge during the developmental period (before adulthood).

Developmental Disabilities (DD), first defined in 1975 federal legislation now known as “The DD Act”, are a group of lifelong conditions that emerge during the developmental period and result in some level of functional limitation in learning, language, communication, cognition, behavior, socialization, or mobility.
The most common DD conditions are intellectual disability, Down syndrome, autism, cerebral palsy, spina bifida, fetal alcohol syndrome, and fragile X syndrome.

The acronym “IDD” is used to describe a group that includes either people with both ID and another DD or a group that includes people with ID or another DD. The supports that people with IDD need to meet their goals vary in intensity from intermittent to pervasive.

 

A distraught looking person sits on the floor with their head in their arms against their knees, and a brick and concrete wall behind them
Protection From Mistreatment/in /by The Arc
People with intellectual and/or developmental disabilities1 must be free from abuse, neglect, or any kind of mistreatment.

ISSUE

Abuse, neglect, mistreatment, exploitation, and maltreatment (collectively, “mistreatment”) of people with intellectual and/or developmental disabilities is all too common. Mistreatment often occurs where people are isolated.

Individuals living outside the family home, regardless of the size or location of the residence, are vulnerable to mistreatment.

Some families lack knowledge or access to appropriate professional or informal supports and services that would help them care for their family members appropriately. A few may, as a result, mistreat their family members. Many more families lack the support they need to help them protect their members from mistreatment by others. When families believe mistreatment has occurred, they often do not have the support to ensure an effective investigation or forceful prosecution after the finding of probable cause.

Federal and state laws may in fact be insufficient for this purpose. Ineffective professional practices among child and adult protective service agencies may add to the problem. Emergency responders and other professionals such as police, emergency room, and protective service workers need to be educated as to how to assist people with intellectual and/or developmental disabilities to be safe without violating their rights. Finally, individuals with intellectual and/or developmental disabilities may not have received any, much less enough, training on how to protect themselves from or report mistreatment.

POSITION

Protection of all people with intellectual and/or developmental disabilities from mistreatment is a core concept of public policy in the United States and an ethical obligation of anyone involved in their lives. The efforts to keep people safe from mistreatment should be balanced with the dignity of risk.

All people with intellectual and/or developmental disabilities should receive training, in ways they can understand, on their rights to exercise their human and civil rights and to be free of mistreatment. They should also learn about the nature of mistreatment and its likely sources. They should know how to avoid it, report it to the appropriate authorities, and give credible proof that it has occurred.

Whenever children or adults with intellectual and/or developmental disabilities are removed from their families’ homes to protect them from mistreatment, they should be placed in small homes, integrated into the community, and not in institutions. Putting people with intellectual and/or developmental disabilities in segregated settings is not an effective way to keep them safe. One of the best protections people with intellectual and/or developmental disabilities can have is a wide, involved network of contacts and relationships and a consistent visible presence in their community.

Children

The law and culture in our country presumes that the birth, adoptive, or foster family is the best source of protection from harm for a child. To assure that families can indeed protect their children, the following should be both available and easy to access:

  • Family support systems, services, and funding;
  • Groups that provide information, referral, and direct services to parents and other family members; and
  • Advocacy, law enforcement, and judicial systems that ensure effective investigation and forceful prosecution of suspects.

If the family is unable to protect its child for any reason, then federal, state, and local child protection systems, services, and funding should be available, accessible, appropriate, affordable, and accountable to the child and, as appropriate, the family.

Whenever a federal, state, or local government agency acts to protect a child, it must do so in ways that are least intrusive into the child’s and family’s rights to privacy. These entities must protect children from abuse.

Adults

The best protection for an adult needing such assistance usually comes from the person’s family, community, and friends. However, when necessary, adult protective agencies or advocacy groups should also provide the needed services. As with children, the full force of the law should be applied to protect the individual from mistreatment. The law, as applied, should recognize the right of all adults to make and follow through on choices that do not put their own physical, emotional, mental, and financial well-being at great risk.

 

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

1Intellectual Disability (ID) is a lifelong condition where significant limitations in both intellectual functioning and adaptive behavior emerge during the developmental period (before adulthood).

Developmental Disabilities (DD), first defined in 1975 federal legislation now known as “The DD Act”, are a group of lifelong conditions that emerge during the developmental period and result in some level of functional limitation in learning, language, communication, cognition, behavior, socialization, or mobility.
The most common DD conditions are intellectual disability, Down syndrome, autism, cerebral palsy, spina bifida, fetal alcohol syndrome, and fragile X syndrome.

The acronym “IDD” is used to describe a group that includes either people with both ID and another DD or a group that includes people with ID or another DD. The supports that people with IDD need to meet their goals vary in intensity from intermittent to pervasive.

An outstretched hand lays with pills on it on a bed with a pill bottle behind
Physician-Assisted Suicide/in /by The Arc
Physician-assisted suicide must be prohibited for people with intellectual disability1 (ID) due to the inherent risk of undue influence.

ISSUE

Physician-assisted suicide occurs when a physician provides a medical means for death, usually a prescription for a lethal amount of medication that the patient takes on his or her own2. As the nation, individual states, and various interest groups consider the adoption of physician-assisted suicide policies, it is essential that people with ID have their rights and interests protected. Historical ignorance, prejudice, and discrimination against people with ID continue. Education of policy makers and society at large is critical.

Major problems that exist are:

  • The documented history of denial of basic rights and medical care, including nutrition and hydration, places the lives of people with ID at extraordinary risk.
  • Despite well-intended laws designed to protect people with ID, our constituents can be unduly influenced by authority figures such as doctors, health care workers, social workers, family, guardian/conservators, and friends, resulting in a lack of true informed consent.
  • The current system of health services, particularly managed care, provides economic incentives for rationing health care, and can lead to the encouragement of physician-assisted suicide.
  • Society often incorrectly perceives that people with ID, by definition, have a poor quality of life.

Public perception on this issue is sometimes confused with specific issues related to advance directives3 and death with dignity.

POSITION

We strongly oppose physician-assisted suicide for people with ID and believe it requires strong and absolute vigilance because:

  • The death of any person with ID by way of physician-assisted suicide is never acceptable and should not be allowed by law under any circumstances;
  • Laws and procedures, however strict, are not sufficient to protect people with ID from being coerced into ending their lives;
  • When the person is seriously ill and in pain, the use of appropriate medical or palliative care to reduce and/or eliminate pain and discomfort can and must be provided.

Rev’d 2017

1Intellectual Disability (ID) is a lifelong condition where significant limitations in both intellectual functioning and adaptive behavior emerge during the developmental period (before adulthood).

2Physician-assisted suicide: Occurs when a physician provides a medical means for death, usually a prescription for a lethal amount of medication that the patient takes on his or her own. (In euthanasia, the physician directly and intentionally administers a substance to cause death.) (Ethics Manual, American College of Physicians, 2012). The American College of Physicians does not support legalization of physician-assisted suicide or euthanasia. “After much consideration, the College concluded that making physician-assisted suicide legal raised serious ethical, clinical, and social concerns and that the practice might undermine patient trust; distract from reform in end-of-life care; and be used in vulnerable patients, including those who are poor, are disabled [sic], or are unable to speak for themselves or minority groups who have experienced discrimination.” The American Medical Association also opposes physician assisted suicide: “allowing physicians to participate in assisted suicide would cause more harm than good. Physician-assisted suicide is fundamentally incompatible with the physician’s role as healer, would be difficult or impossible to control, and would pose serious societal risks.” (Code of Ethics, American Medical Association, 1996). As of March of 2012, only two states, Oregon and Washington, specifically authorize physicians, in limited circumstances, to assist suicide. These states, however, do not allow for the practice to be used in situations where the person choosing to commit suicide lacks mental competence.

3See The Arc’s health care position statement regarding advanced directives.

Three teenage girls sit outside smiling and laughing as they talk
Inclusion/in /by The Arc
All people with intellectual and/or developmental disabilities1 benefit when fully included in community life.

ISSUE

Individuals with intellectual and/or developmental disabilities often are not treated equally. They have been labeled by their disability and separated from the community. For many years they were relegated to sterile, dehumanizing institutions. Even as they have begun living in the community, they have experienced exclusion from its schools, jobs, and social life. Moreover, the services they receive frequently segregate, isolate, and focus on an individual’s deficits rather than their strengths and lifestyle choices.

POSITION

All people benefit when persons with intellectual and/or developmental disabilities are included in community life. People with disabilities should be welcomed and included in all aspects of our society. This includes public activities, programs and settings, and private establishments which are open and accessible to members of the general public. People with disabilities should receive the supports they need to participate actively in community life without having to wait.

Children should have the opportunity to:

  • Live in a family home;
  • Have access to the supports that they need;
  • Grow up enjoying nurturing adult relationships both inside and outside a family home;
  • Enjoy typical childhood relationships and friendships;
  • Learn in their neighborhood school in a general education classroom that contains children of the same age without disabilities;
  • Participate in the same activities as children without disabilities;
  • Play and participate with all children in community recreation; and
  • Participate fully in the religious observances, practices, events, and ceremonies of the family’s choice.

Adults should have the opportunity to:

  • Have relationships of their own choosing with individuals in the community, in addition to paid staff and/or immediate family;
  • Live in a home where and with whom they choose;
  • Have access to the supports that they need;
  • Engage in meaningful work in an inclusive setting;
  • Enjoy the same recreation and other leisure activities that are available to the general public; and
  • Participate fully in the religious observances, practices, events, and ceremonies of the individual’s choice.

 

Rev’d 2021
Joint statement with the American Association on Intellectual and Developmental Disabilities (AAIDD).

1Intellectual Disability (ID) is a lifelong condition where significant limitations in both intellectual functioning and adaptive behavior emerge during the developmental period (before adulthood).

Developmental Disabilities (DD), first defined in 1975 federal legislation now known as “The DD Act”, are a group of lifelong conditions that emerge during the developmental period and result in some level of functional limitation in learning, language, communication, cognition, behavior, socialization, or mobility. The most common DD conditions are intellectual disability, Down syndrome, autism, cerebral palsy, spina bifida, fetal alcohol syndrome, and fragile X syndrome.

The acronym “IDD” is used to describe a group that includes either people with both ID and another DD or a group that includes people with ID or another DD. The supports that people with IDD need to meet their goals vary in intensity from intermittent to pervasive.

Woman speaking into megaphone surrounded by people at an outdoor protest
Human and Civil Rights/in /by The Arc
All people have human rights and are entitled to the protection and benefits of the civil rights laws of their country. This includes people with intellectual and/or developmental disabilities1 (IDD). They are entitled to exercise their rights and to have their human rights and civil rights respected. When their rights are violated, they are entitled to protection and rights restoration.

ISSUE

Freedom from discrimination is a basic human right. Yet today, and historically, the human and civil rights of people with IDD have been unjustifiably denied or limited.

People with IDD form a diverse group, sharing the same characteristics found in society at large. People with IDD can be found among people of any age, gender identity and expression, race and ethnicity, sexual orientation and sexuality, communication and expression, culture, language, faith or religion, location, economic status, immigration and legal residency status, familial status, support need, and among people who have other disabilities.

Many identities and lived experiences, including IDD, are socially marginalized. Those with IDD who have additional marginalized identities – including those related to race, ethnicity, LGBTQ+2 status, and poverty – are least likely to have their rights respected, protected, and enforced. Those at the intersection of multiple marginalized identities are most likely to experience oppression and violation of their human and civil rights.

People with IDD have the right to share in the benefits and riches of society and the world as well as the right to make their own contributions to their communities and society. They have often been denied these rights and opportunities.

HUMAN RIGHTS

One of the purposes of the United Nations is to “reaffirm faith in fundamental human rights, in the dignity and worth of the human person …”, as stated in its 1945 charter. The UN’s Universal Declaration of Human Rights (1948) includes recognition of the inherent dignity and worth of, and equal and inalienable rights of, all members of the human family as the foundation of freedom, justice, and peace in the world. The Declaration, which the United States ratified in 1992, holds that human rights should be protected by law.

A number of UN covenants address human rights, most notably the right to individual autonomy and independence and the right to make one’s own choices. Other human rights noted in the Declaration and later covenants3 include freedom from discrimination on the basis of disability; freedom from fear, torture, or inhuman or degrading treatment or punishment; and the right to accessibility and equality of opportunity for people with disabilities. They address self-determination, including control of own resources; availability of education for all; the right to work, fair wages, safe working conditions, and reasonable time off; and the right to be equal before the courts. Identified human rights are protected by civil rights laws of the various countries and enforced by governments, legal systems, and private actions.

CIVIL RIGHTS

In the United States, civil rights are affirmed at the national level by the U.S. Constitution, the Bill of Rights, and the various civil rights laws. In practice, state and federal laws have failed to adequately protect or support people with disabilities and other marginalized identities. People with IDD, their families, and advocates filed numerous lawsuits, including class actions, over more than fifty years to enforce the rights of people with IDD at the state and federal levels.

In response, Congress has enacted many additional federal laws to establish, bolster, and further protect the civil rights of people with disabilities. Recent examples include Section 504 of the Rehabilitation Act, the Individuals with Disabilities Education Act (IDEA), the Civil Rights of Institutionalized Persons Act, the Americans with Disabilities Act (ADA) and its amendments, and provisions of the Affordable Care Act.

Regrettably, even with federal protections, people with IDD continue to face barriers to the full exercise and enjoyment of their human and civil rights, including:

  • Discrimination in education, employment, housing, voting, transportation, and other programs and activities;
  • Social and cultural attitudes of devaluation and fear;
  • Prejudiced beliefs and implicit bias that promotes that people with IDD cannot and/or do not contribute to society or that they are unworthy of public funding;
  • Societal failure to provide the supports wanted and needed for full community participation, equal opportunity, independent living, and economic self-sufficiency;
  • Systems that value protection over freedom to exercise individual rights;
  • Restraint, seclusion, use of aversives, and other forms of behavioral control masquerading as treatment;
  • Reliance on prisons, jails, psychiatric, and other institutional facilities as a substitute for supporting people in successful community living;
  • Barriers to economic independence that are built into existing programs, intentional or not;
  • Underpayment for labor and services and denial of the means of economic self-sufficiency;
  • Systemic barriers to culturally accessible and competent health care resulting in significant health disparities, including higher rates of treatable illness and death; and
  • Legislation and regulations that restrict or limit access to voting or the ability to vote without undue barriers or hardship, including support to cast one’s ballot.

POSITION

Human and civil rights are recognized by national or international laws, declarations, conventions, or standards. These rights include the right to life; liberty; equality; speech, assembly, and petition; dignity; self-determination; autonomy; family and reproduction; justice; community participation; property and finances; health; well-being; voting; equality of opportunity; choice; and bear arms. They also include freedom from unwarranted and unjustifiably extensive guardianship or conservatorship, restraints, seclusion, and aversive treatments.

People with IDD are richly diverse, sharing the same characteristics found in society at large. People with IDD can be found among people of any age, gender identity and expression, race and ethnicity, sexual orientation and sexuality, communication and expression, culture, language, faith or religion, location, economic status, immigration and legal residency status, familial status, support need, and among people who have other disabilities.

People with IDD have the same human rights as all people and are entitled to the same benefits and legal protection of their civil rights. They are entitled to exercise their rights and to have their human rights and civil rights respected. When their rights are violated, people with IDD are entitled to protection, rights restoration, and compensation for losses.

All people with intellectual and/or developmental disabilities have the right to accommodations, assistance, and 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.

Education of all key actors is important. It is imperative that responsible people, including law enforcement, educators, providers, direct support professionals, family members, and others are held accountable for negligent, deliberate, or unlawful harm to people with IDD caused by their actions or inactions. Harm can result from indifference and brutality. Both can result in severe consequences to people with IDD. One glaring example is the inhumane use of restraints, seclusion, and aversive treatments, which too often lead to death.

Policy makers must act to ensure that human rights are protected by law; that any gaps or failures in the law are corrected; and that laws are enforced by respectful and knowledgeable authorities.

 

Rev’d 2021
Joint statement with the American Association on Intellectual and Developmental Disabilities (AAIDD).

1Intellectual Disability (ID) is a lifelong condition where significant limitations in both intellectual functioning and adaptive behavior emerge during the developmental period (before adulthood).

Developmental Disabilities (DD), first defined in 1975 federal legislation now known as “The DD Act”, are a group of lifelong conditions that emerge during the developmental period and result in some level of functional limitation in learning, language, communication, cognition, behavior, socialization, or mobility. The most common DD conditions are intellectual disability, Down syndrome, autism, cerebral palsy, spina bifida, fetal alcohol syndrome, and fragile X syndrome.

The acronym “IDD” is used to describe a group that includes either people with both ID and another DD or a group that includes people with ID or another DD. The supports that people with IDD need to meet their goals vary in intensity from intermittent to pervasive.

2LGBTQ+ stands for lesbian, gay, bisexual, transgender, queer or questioning, and other expressions.

3The United States has not ratified all of these additional covenants or conventions.

A rear-facing defendant speaks to a judge with his attorney beside him
Criminal Justice System/in /by The Arc
People with intellectual and/or developmental disabilities1 (IDD) 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 (IDD) 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 IDD. These individuals are:

  • Unrecognized as having a disability. Individuals with IDD 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 IDD are often denied a fair evaluation of whether they are entitled to legal protection as having IDD on the basis of false stereotypes about what individuals with IDD can and cannot understand or do;
  • Victimized at high rates. Individuals with IDD 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 IDD 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 IDD 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 IDD 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 IDD often serve extended time because they do not understand or cannot meet steps to reduce time and secure an earlier release.

When individuals with IDD 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 IDD 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 IDD.

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 IDD, 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

When sentenced, individuals with IDD 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

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 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 2021
Joint statement with the American Association on Intellectual and Developmental Disabilities (AAIDD).

1Intellectual Disability (ID) is a lifelong condition where significant limitations in both intellectual functioning and adaptive behavior emerge during the developmental period (before adulthood).

Developmental Disabilities (DD), first defined in 1975 federal legislation now known as “The DD Act”, are a group of lifelong conditions that emerge during the developmental period and result in some level of functional limitation in learning, language, communication, cognition, behavior, socialization, or mobility. The most common DD conditions are intellectual disability, Down syndrome, autism, cerebral palsy, spina bifida, fetal alcohol syndrome, and fragile X syndrome.

The acronym “IDD” is used to describe a group that includes either people with both ID and another DD or a group that includes people with ID or another DD. The supports that people with IDD need to meet their goals vary in intensity from intermittent to pervasive.

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 The Arc

All individuals with intellectual and/or developmental disabilities1 (IDD) 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 IDD 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 IDD 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 IDD and the preservation of legal capacity as a priority for all people needing assistance with decision making.
  • Like their peers without disabilities, individuals with IDD 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 IDD 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 IDD 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 IDD 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 IDD 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 IDD experience guardianship as stigmatizing and inconsistent with their exercise of adult roles and responsibilities.

POSITION

The primary goals in assisting individuals with IDD 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 IDD can participate in their own affairs with supports, assistance, and guidance from others, such as family and friends. People with IDD 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 IDD, 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 IDD 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 IDD 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 IDD.
  • 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 IDD 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 IDD.
  • Members of the judiciary, attorneys, and other professionals need training and education on alternatives to guardianship for individuals with IDD, and they must zealously advocate for preserving the substantive and procedural rights of all individuals with IDD.
  • If a guardian is to be appointed, the preferences and assent of the individual with IDD 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 IDD or their families.
  • Guardianship should include a person-centered plan of teaching and/or supports for decision making so the individual with IDD 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 IDD 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 IDD 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 2021
Joint statement with the American Association on Intellectual and Developmental Disabilities (AAIDD).

1Intellectual Disability (ID) is a lifelong condition where significant limitations in both intellectual functioning and adaptive behavior emerge during the developmental period (before adulthood).

Developmental Disabilities (DD), first defined in 1975 federal legislation now known as “The DD Act”, are a group of lifelong conditions that emerge during the developmental period and result in some level of functional limitation in learning, language, communication, cognition, behavior, socialization, or mobility. The most common DD conditions are intellectual disability, Down syndrome, autism, cerebral palsy, spina bifida, fetal alcohol syndrome, and fragile X syndrome.

The acronym “IDD” is used to describe a group that includes either people with both ID and another DD or a group that includes people with ID or another DD. The supports that people with IDD need to meet their goals vary in intensity from intermittent to pervasive.

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

Young African American boy in red jacket facing the U.S. Capitol building
Advocacy/in /by The Arc
Advocacy 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, or behaviors of government agencies, businesses, and others. Advocacy is essential for promoting and protecting the civil and human rights of people with intellectual and/or developmental disabilities1 (IDD). All advocacy efforts by, with, and on behalf of people with IDD must be centered around the views, needs, expressed interests, and leadership of self-advocates.

ISSUE

People with IDD often do not have access to the supports or opportunities they need to exercise their civil and human rights due to ableism and social, systemic, and institutional discrimination. Strong advocacy is necessary to support the full inclusion and participation of people with IDD in the community. Effective advocacy is also required to prevent and address abuse, neglect, discrimination, implicit and explicit bias, and any exploitation that people with IDD may experience.

POSITION

To achieve their goals, advocates must be able to interact directly with those responsible for policies and practices that affect their lives, including public officials, private and government funded support system leaders, other advocates, business leaders, and the general public. Self-advocates are people with lived experiences as people with IDD. Advocacy efforts should be led by self-advocates, sharing their stories, views, and expressed interests. Organizational advocacy efforts must be inclusive and accessible to all, regardless of age, gender identity and expression, race and ethnicity, sexual orientation and sexuality, communication and expression, culture, faith or religion, location, economic status, immigration and legal residency status, familial status, support need, or disability.

Advocates include individuals with and without IDD, family members, groups, and organizations that promote the human rights of people with IDD and support their full inclusion in the community. It is important that:

  • Advocates have tools and information to understand political, legal, and disability services systems.
  • People with IDD and families have resources to educate and empower them to be a force for change.
  • People with IDD and their families have support to effectively navigate service delivery systems.
  • Advocates understand the issues that people with IDD face and get to know the people they are advocating for.
  • Advocates facilitate opportunities and support the empowerment of people with IDD to advocate for themselves.
  • Advocates who need support get the support they need; supporters should respond to their support needs and provide education, as needed.
  • Advocates are not threatened or retaliated against for their advocacy.
  • Advocacy efforts involve whole communities, not just people with IDD.

Advocacy is critical for supporting the needs of an individual as well as for broader systemic change. Advocacy helps ensure the full exercise, enjoyment, and enforcement of human and civil rights for people with IDD. Advocacy is important to ensure marginalized groups have access to culturally responsive services and supports. Advocacy also is vital to influencing laws and policies to improve systems of support and services, both for those who currently receive services and for generations to come. Advocacy can happen informally and formally. For example, informal advocacy can take place through educational activities, personal conversations, and social media posts. Examples of formal advocacy can include sending letters, individual or group meetings, public testimony, rallies, education forums, town halls, meetings with legislators and other policymakers, and litigation. In certain situations, individuals with IDD need legal advocacy. There are federally mandated Protection and Advocacy (P&A) systems in each state that advocate for and protect the rights of people with disabilities, along with other forms of public legal assistance. Any form of public legal assistance must be available and accessible to people with IDD and must:

  • Be able to respond to issues concerning any stage of life;
  • Be independent of conflicts of interest, undue influence, and government control;
  • Be adequately funded and staffed;
  • Provide advocacy on behalf of clients even when a formal complaint has not been filed;
  • Be subject to appropriate oversight to assure their quality, cost effectiveness, efficiency, and high standards;
  • Be informed by data collection and available research on the needs and rights of people with IDD; and
  • Be able to deliver multiple advocacy strategies, such as information and referral, mediation, legal action, legislative and regulatory solutions, and appeals for unfavorable decisions.

All advocacy efforts must follow the lead of self-advocates, sharing their stories, views, and expressed interests.

Rev’d 2022
Joint statement with the American Association on Intellectual and Developmental Disabilities (AAIDD).

1Intellectual Disability (ID) is a lifelong condition where significant limitations in both intellectual functioning and adaptive behavior emerge during the developmental period (before adulthood).

Developmental Disabilities (DD), first defined in 1975 federal legislation now known as “The DD Act”, are a group of lifelong conditions that emerge during the developmental period and result in some level of functional limitation in learning, language, communication, cognition, behavior, socialization, or mobility.
The most common DD conditions are intellectual disability, Down syndrome, autism, cerebral palsy, spina bifida, fetal alcohol syndrome, and fragile X syndrome.

The acronym “IDD” is used to describe a group that includes either people with both ID and another DD or a group that includes people with ID or another DD. The supports that people with IDD need to meet their goals vary in intensity from intermittent to pervasive.