Moral and Ethical Issues Specific to Developmental Disabilities
Guardianship
Ethical dilemmas in guardianship extend beyond mere legality, deeply focusing on the core principles of decision-making authority and autonomy.
The central, often contentious question: Should individuals with developmental disabilities possess the right to make life-affecting decisions, or should these critical decisions be made for them by others, ostensibly in their best interest?
A pervasive misconception exists, falsely assuming that all individuals with developmental disabilities inherently lack the capacity for sound decision-making.
Guardianship profoundly impacts the lives of people with developmental disabilities, touching nearly every aspect of their existence.
Appointment of a guardian can result in the significant loss of fundamental rights, including:
Choosing their place of residence and with whom they live.
Deciding on medical treatment options and healthcare choices.
Obtaining a driver's license, impacting their mobility and independence.
Owning property or entering into leases, affecting their financial autonomy.
Owning weapons, subject to specific regulations and potential restrictions.
Entering into contracts or initiating lawsuits, limiting their legal capacity.
Getting married and forming intimate relationships.
Having or raising children, with considerations for parental fitness and support.
Voting, thus impacting their civic engagement and political voice.
Guardianship is essentially substitute decision-making, fundamentally transferring an individual's decision-making rights to another party.
This authority can be vested in various individuals, such as parents, relatives, friends, or government appointees, each with their own perspectives and motivations.
Alarmingly, control is sometimes assumed without any legal basis or a formal determination of incompetence, raising serious ethical concerns.
Guardianship options in the 1950s were notably limited, often granting guardians extensive and unchecked power over the individual under their care.
Currently, a broader range of guardianship types exists, with control limited to specific decisions such as healthcare or finances, offering a more tailored approach.
Emerging approaches prioritize supported decision-making and independence for people with developmental disabilities, fostering greater autonomy.
A guardian is legally empowered to make decisions for someone deemed incompetent by a court of law, underscoring the gravity of such determinations.
The Guardianship Rights of Parents
Parents are automatically guardians of their minor children, inherently possessing decision-making rights until the child legally reaches the age of majority.
The U.S. Supreme Court firmly affirmed these parental rights in controlling a child's upbringing in the landmark case of Meyer v. Nebraska (1923).
Parental guardianship typically ends when a child reaches the age of majority, or under specific circumstances such as graduation, marriage, or military service.
These traditional rules don't always seamlessly apply to individuals with developmental disabilities, as their decision-making power isn't automatically assumed at the age of majority.
Parents and the state often continue making critical decisions for adults with developmental disabilities, frequently based on perceived or presumed incompetence.
Challenges to Parental Rights
Disputes can arise between parents and the state regarding decision-making rights for a child, potentially leading to court-appointed guardians representing the individual's best interests.
In Prince v. Massachusetts (1944), the U.S. Supreme Court affirmed the government's legitimate authority to regulate child welfare, thus limiting absolute parental authority.
Court decisions have consistently supported challenging parental rights, particularly in cases of neglect or abuse, with limitations on parental authority regarding property transfer, medical treatment, and exposure to necessary ideas (Parham v. J.R., 442 U.S. 584, 1979).
Current law duly acknowledges that parents may not invariably act in a child's best interest, necessitating state intervention to safeguard the child's welfare.
State intervention is more common for children in general compared to children with developmental disabilities, where decisions have historically protected the interests of others over the child.
This historical trend was especially evident in residential facilities, where residents' property was often taken, medical treatment was inadequate, and exposure to experiences necessary for independence was limited.
Guardianship laws in the U.S. have been in place for centuries with few substantive changes until the 20th century, leading to concerns about their relevance.
"As a consequence of this neglect, the guardianship laws are probably the most archaic laws related to children on the statute books of the [United] States." (Weisman, 1949, p. 17)
Since the 1950s, several critical issues have challenged the effectiveness of guardianship:
Outdated guardianship rules that fail to address contemporary needs.
A prevalent lack of parental planning for adult children with developmental disabilities, leaving a void in support.
The broad range of decisions that guardians are typically allowed to make, granting them extensive control.
Problems with the Rules
A comprehensive 1949 review of guardianship rules identified major problems:
Unmet needs for guardianship, leaving individuals without adequate support.
Unclear rules that hinder access to essential social services.
Federal benefits inappropriately paid to adults caring for children without proper screening or appointment.
Inadequate legislation that fails to protect the rights and welfare of those under guardianship (Weisman, 1949, p. 17).
By 1962, guardianship rules had not significantly improved, with further problems emerging for both children and adults with developmental disabilities.
The President’s Committee on Mental Retardation expressed profound concern:
Most states’ provisions for guardianship of the retarded are relics of a time when the mentally retarded individual was considered an incompetent who had to be kept away from normal social and work contacts. They largely consider or assume the retarded person to be without rights, deny him due process or the equal protection of the laws, and often encumber his family’s estate for years as the price of the state’s assuming his care. The damage done to retarded individuals who are capable of self-support and self-reliance, to those who have become caught up in the judicial process, and to families who can be in effect held responsible for a retarded individual into a second generation is incalculable.
Richard Allen documented growing problems with guardianship laws by 1969:
Difficulty in finding someone willing and suitable to serve as a guardian.