Developmental Center Closure/in /by Arc Ny

Community-based residential and day programs have been essential in ensuring people with intellectual and other developmental disabilities their rightful place in society. The Arc New York continues to support closure of all Developmental Centers and the development of appropriate community-based services to accomplish that goal.

Individuals with intellectual and other developmental disabilities living in Developmental Centers can be fully integrated into community settings with appropriate training and support.

It is The Arc New York’s position that:

  • Developmental Center closure efforts must continue to move forward;
  • Developmental Center closures must be in accordance with principles pertaining to person-centered placement;
  • Downsizing must continue as responsibly and appropriate as possible;
  • Providers must be guaranteed the financial resources to provide the proper training, and supports for individuals to successfully transition in to community settings;
  • Closure plans must ensure that appropriate supports are developed for persons with special needs;
  • Developmental Centers must never again become an accepted way of life.
Data and Transparency/in /by Arc Ny

Data collected by New York state agencies such as DOH , OMH , OPWDD , and the NYS Comptroller can offer insights into the I/DD population in myriad ways. This information is vital for understanding who is seeking access to services, what supports they seek, and how long they might wait to achieve their stated goals. Additionally, this information can provide a metric for tracking the efficacy of policies, particularly when it comes to residential placements.

True transparency accomplishes two goals. First, it maintains access to the information collected on a continual basis from providers, people, and other front-facing organizations and, second, it builds trust among all parties as long as the information distributed is accurately and fairly presented.

New York State offers many platforms for data access, but they do not fully illuminate the data of people with I/DD and in ways that are easily accessible.

It is the Position of The Arc New York that:

  • OPWDD must, on a rolling basis, collect and share data on the full waitlist, which they maintain for emergency, substantial, current, and other residential supports
  • Data must be accessible to people and stakeholders in a way that offers:
    o Insight into the need
    o Demographics of the current population being supported
    o The ways people are being supported
  • Results and analysis of survey data that OPWDD collects from service providers must be shared with the providers in a timely fashion
  • Costs associated with state operations must be accessible to people and stakeholders transparently and proactively
  • OPWDD must partner with providers in the design of data definitions and collection methods wherever possible to maximize provider participation and the effectiveness of the survey process
Comprehensive and Integrated Health Care/in /by Arc Ny

People with intellectual and other developmental disabilities have the right to comprehensive, appropriate, timely, affordable, and accessible medical, dental and habilitative services throughout their lives. Comprehensive health care must be provided, regardless of a person’s ability to pay.

It is The Arc New York’s position that:

  • Comprehensive Health Care must:
    • Include quality primary care, specialty medical care, dental care, oral health, clinical, behavioral health, and habilitative services based on the person’s medical and developmental diagnosis;
    • Preserve and/or improve the person’s physical or psychological health and overall well-being;
    • Include care coordination that will integrate comprehensive health care services, enhance health care outcomes, and avoid duplication of services, which may reduce costs;
    • Be available, accessible, affordable and timely;
    • Be provided only with the informed consent of the person receiving services, legal guardian, surrogate decision-making committee or, any other legally authorized person.
  • The Health Care Decision Maker must:
    • Have the legal capacity to give consent;
    • Be given sufficient information to understand the benefits and risks of the
      proposed treatment;
    • Be offered the opportunity to ask questions and receive complete answers in a
      manner understandable to the decision maker;
    • Never be forced to accept or reject a particular treatment through deceit, threat or for reasons that relate to the convenience of the provider.
    • Be selected by the person receiving services as a collaborative partner to the fullest extent possible.
  • Properly obtained and documented advance directives must be honored for persons with intellectual and other developmental disabilities;
  • Public policy must guarantee that health insurance coverage for persons with intellectual and other developmental disabilities is comprehensive in scope covering all physical and behavioral health issues, has a competitive rate structure with flexibility that allows for integrated service delivery, covering all
    health and health-related services, equal in every respect to that afforded to the general population;
  • In the delivery of health care services to people with intellectual and other developmental disabilities, providers and caregivers must educate the medical community on research-based best practices;
  • Direct Service Providers who accompany people with intellectual and other developmental disabilities in health care settings should receive training in how to effectively navigate those encounters
Care Coordination/in /by Arc Ny

People with intellectual and other developmental disabilities must have access to services and resources that are available to all other citizens. Identifying, obtaining and coordinating these services and resources to meet the entire range of personal needs and preferences necessary to assure quality of life in the community can be
challenging.

It is The Arc New York’s position that:

  • Such services and resources should be available to individuals and their families through an organized process.
  • Such services should address the needs and wishes of the individual and their family or guardian through a person-centered needs assessment interview process.
  • Care Coordinators must be competent, sensitive and committed to representing the interests, preferences and visions of the individual and their family or guardian and assist them in making informed decisions.
  • Care Coordinators need initial and ongoing training and supervision to ensure knowledge of all appropriate program and opportunity choices available to individuals and their families. Care Coordinators should identify and facilitate formal (day hab) and informal (family) supports as well as be aware of other options more suitable for an individual rather than the existing programs including schools.
  • Care Coordinators should exercise confidentiality and neutrality and seek out services identified using all providers available in the community.
  • Adequate funding must be available to support care coordination that is of high quality, and responsive to meeting the positive quality outcomes of the individual served. As a foundation for any future transition to managed care for people with I/DD, resources must be sufficiently allocated to ensure successful outcomes.
Advocacy at the End of Life/in /by Arc Ny

All persons with intellectual and other developmental disabilities are valuable and deserve respect consistent with human dignity throughout their life. The value of a person’s life is not related to the type, degree, or severity of disability. Attitudes related to care at the end of life may vary based on clinical experience, medical practice, religious beliefs and an understanding of the legal rights of individuals with intellectual and other developmental disabilities.

It is The Arc New York’s position that:

  • All Chapters providing services must be knowledgeable and well-versed of all laws, regulations, statutes and policies that apply to end of life decisions.
  • The end of life is defined as the last year of life, consistent with the current standard in the public health law. Individuals may be considered to be at the end of life when:
    – they have a terminal condition that is progressive, irreversible, or incurable such as late-stage Alzheimer disease or terminal cancer,
    – expected to cause death in less than one year or
    – they are permanently unconscious; and
    – treatment would impose an extraordinary burden, other than intellectual or developmental disability.
  • Individuals are not at the end of life when they are living in a stable condition that requires significant life-sustaining treatment (such as a mechanical ventilator or a feeding tube) and wish to continue receiving such treatment.
  • Discussions about care at the end of life should occur, if possible, prior to being at the end stage of life. These discussions should include statements about what care the person would like to receive if he or she were in one of the end of life conditions described above. Those who are closest to the person (ordinarily the family, legal guardian, trusted caregivers, nurses, friends, and others) are best able to identify the person’s preferences when the person is unable to express them directly.
  • Legal or other professional assistance should be used to develop living wills, health care proxies, and other such statements about personal preferences. These statements should be updated periodically taking into account the individual’s wishes, medical advances, technological improvements, and changing perspectives during one’s lifespan.
  • Withdrawing or withholding care may be appropriate in some situations, consistent with legal authority granted by New York State, but should not itself imply lack of respect for the importance of that person’s life. Withholding or withdrawal of life-sustaining treatment (including nutrition and hydration should be consistent with the current public health law noted above.
  • The principles of informed consent, as contained in statute, require that decision-makers have:
    1. the legal authority to provide consent if the person does not have the capacity to provide consent,
    2. all of the information needed to make a decision;
    3. the ability to assess the information adequately; and
    4. freedom from undue influence by others. Guardians and healthcare proxy representatives must always seek to determine the uncoerced, authentic voice of the person with an intellectual or other developmental disability, and failing that, what is in the person’s best interest, and provide all of the information the person needs to express his or her preferences.
  • Instructional strategies and training materials should be developed that will assist individuals with intellectual and other developmental disabilities to access relevant information, analyze it effectively, and utilize it to assess options and make choices.
  • Religion and spirituality of the person are important and must be respected. Their religious or spiritual preferences should be made identified or articulated by the individual or his or her loved ones. Spiritual or pastoral care should be provided when it is desired.
  • Needed treatment should be available in the most appropriate context, taking into account the person’s preferences and health care needs. People should not be required to live in a nursing home in order to receive care that could be provided in a more natural setting such as the person’s home. Needed treatment includes (but is not limited to) provision of home health care, nursing, medications, nutrition, hydration, and social interaction.
  • Hospice care at the end of life shall be available when it is appropriate. Adequate pain relief is essential to alleviate and prevent suffering at the end of life.
  • The wishes of persons who have clearly and competently expressed them should be honored by caregivers and health care providers.
  • Persons who are “permanently unconscious” should only have treatment withheld or withdrawn in the event that such treatmentis found, under the standards and processes of the surrogates’s court procedures act, to be an “extraordinary burden on such persons, in light of” the person’s condition and the expected outcome of the treatment, both exclusive of such person’s intellectual or developmental disability.
  • The legally determined surrogate (parent, spouse, etc.) or court-appointed guardian is authorized to make treatment decisions when the person is not able to make these decisions directly in accordance with the Health Care Decisions Act for Persons with Mental Retardation and the Family Health Care Decisions Act.
  • Prompt hospital ethics committee and/or judicial review is appropriate and necessary when application of this policy is unclear or in dispute among health care providers, family members, guardians, friends and other significant caregivers. All other avenues such as the use of internal Ethics Committee, Guardianship Committee or Surrogate Decision-Making Committee should be exhausted.
Portrait of a smiling young woman in a red top
Self-Determination/in /by
People with intellectual and/or developmental disabilities1 (I/DD) 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 I/DD 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 I/DD 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 I/DD 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 I/DD 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 I/DD 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 I/DD community.

Laws, regulations, policies, procedures, and funding systems should be regularly reviewed and revised to remove barriers and to promote self-determination. People with I/DD 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
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
People with intellectual and/or developmental disabilities1 (I/DD) 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).

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.

An outstretched hand lays with pills on it on a bed with a pill bottle behind
Physician-Assisted Suicide/in /by
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 own.2 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

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) manual, Intellectual Disability: Definition, Classification, and Systems of Supports, and the Diagnostic and Statistical Manual of Mental Disorders, 4th Edition (DSM IV), published by the American Psychiatric Association (APA). In everyday language, people with ID are frequently referred to as people with cognitive, intellectual and/or developmental disabilities.

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
All people with intellectual and/or developmental disabilities1  (I/DD) 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 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.