Joint Position Statement of AAIDD and The Arc

Statement

All individuals with intellectual and developmental disabilities (IDD)[1]have the right to recognition as persons before the law and to enjoy legal capacity on an equal basis with individuals who do not have disabilities in all aspects of life (United Nations Convention on the Rights of Persons with Disabilities (UN CRPD), 2006). The personal autonomy, liberty, freedom, and dignity of each individual with I/DD must be respected and supported. Legally, each individual adult or emancipated minor is presumed competent to make decisions for himself or herself, and each individual with I/DD should receive the preparation, opportunities, and decision-making supports to develop as a decision-maker over the course of his or her lifetime.

Issue

• Current trends presume the decision-making capacity of individuals with 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 guardianship[2] 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 I/DD and their families.
• Serving in the dual roles of guardian and paid service provider or paid advocate creates a conflict of interest or the appearance of a conflict of interest. Such conflicts must be mitigated or avoided.
• Some statutory privacy measures have made it more difficult for those assisting other individuals to have access to their records, make decisions, or both.  Thus, to obtain or modify needed medical care, services, and supports, an individual with 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 I/DD 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 I/DD.
• Members of the judiciary, attorneys, and other professionals need training and education on alternatives to guardianship for individuals with I/DD, and they must zealously advocate for preserving the substantive and procedural rights of all individuals with I/DD.
• If a guardian is to be appointed, the preferences and assent of the individual with I/DD with respect to the identity and function of the proposed guardian should be considered.
• The appointment of a guardian should be appropriately time-limited in order to provide regular periodic review of the individual’s current capabilities and functioning and whether a less restrictive alternative is now indicated. The reviews should include an independent professional assessment by a highly qualified examiner of the individual’s functioning with necessary accommodations and communication supports. All costs of the review should be paid by the state and not imposed on individuals with I/DD or their families.
• Guardianship should include a person-centered plan of teaching and/or supports for decision making so the individual with I/DD will have opportunities to learn and practice the skills needed to be autonomous and to direct his or her own life.  Understanding the nature and purpose of guardianship and understanding that most people with I/DD can manage their own affairs with assistance and guidance should be part of transition planning in schools and of any curriculum or procedures that prepare the individual’s person-centered plan for adulthood. Schools should not give legal advice to students and families, and should provide students and families with information about less restrictive alternatives to guardianship.
• The ultimate goal of any such curriculum or procedures should be to ensure the individual’s autonomy to the maximum extent possible, individualize decision-making supports for the individual, and ensure that the individual has maximum access to equal opportunity, independent living, full participation, and economic self-sufficiency, each with supports that take into account the individual’s capacities and needs.

 Guardian Responsibilities

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

 

______________

[1]

Intellectual 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.

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

Adopted:      

American Association on Intellectual and Developmental Disabilities
Board of Directors
March 16, 2016 

The Arc of the United States
Board of Directors 
April 10, 2016              

Chapters of The Arc
October 28, 2016