Gavin Howe
People with Down syndrome often face challenges when it comes to making their own decisions due to legal arrangements like guardianship and a lack of proper support. The United Nations Convention on the Rights of Persons with Disabilities recognizes the right of people with disabilities to have legal capacity, meaning they are recognized by the law as individuals with the right to make choices about important aspects of their lives. This has sparked discussions on supported decision-making, which involves providing people with Down syndrome the necessary tools and assistance to make their own decisions. The mental capacity of individuals with Down syndrome varies, and each person's unique abilities and needs must be considered. While some may require assistance in understanding and processing information, the presumption of capacity states that we should not assume they are incapable of decision-making. This empowers individuals with Down syndrome to live fulfilling lives on an equal basis with others.
| Characteristics | Values |
|---|---|
| Legal capacity | People with Down syndrome are often denied legal capacity, which means the law recognises them as a person with rights. |
| Guardianship | Legal arrangements like guardianship prevent people from making their own decisions. |
| Accessible information | Information is often not presented in an accessible way, making it difficult for people with intellectual disabilities to understand and make decisions. |
| Right to control | People with Down syndrome have the right to control their own money and property. |
| Support | People with Down syndrome can make decisions with appropriate support, and safeguards are in place to prevent abuse. |
| Easy-to-understand communication | Using easy-to-understand communication means more people can understand and participate in decision-making. |
| Parental influence | Pediatricians should consider the developing capacities of patients with Down syndrome and involve them in decision-making when possible. |
| Family-centred care | Family-centred care recognises the family's primary role in supporting the child and leads to better patient outcomes and satisfaction. |
| Informed consent | If a person with Down syndrome is not competent to give informed consent, a guardian may be appointed to make decisions on their behalf. |
| Individual ability | The mental capacity of people with Down syndrome varies, and each person's ability to make decisions should be considered individually. |
| Assisted decision-making | Steps may be taken to assist people with Down syndrome in the decision-making process, such as presenting information in a different way or using suitable language. |
| Independence | Teaching independence and providing opportunities for individuals with Down syndrome to make their own choices are crucial for their growth and living a fulfilling life. |
| Planning for the future | Families and carers may consider setting up Lasting Powers of Attorney (LPAs) to assist individuals with Down syndrome in making future decisions. |
What You'll Learn
The right to legal capacity
Legal capacity is a legal term referring to an individual's ability to understand and make decisions about various aspects of their lives. This includes decisions about healthcare, finances, living arrangements, and personal relationships. For individuals with Down syndrome, legal arrangements like guardianship or conservatorship can be implemented, transferring decision-making authority to a third party if it is determined that the individual lacks the capacity to make their own decisions.
The United Nations Convention on the Rights of Persons with Disabilities affirms that individuals with disabilities have the right to "Enjoy legal capacity on an equal basis with others in all aspects of life" and should have access to the necessary support to exercise this capacity. This includes the right to make decisions with appropriate support and safeguards in place to prevent abuse.
It is important to recognise that the mental capacity of individuals with Down syndrome can vary significantly. Therefore, each decision-making situation should be carefully considered, taking into account the complexity of the decision and the individual's ability to understand and process the information. The involvement of family, carers, and friends can be crucial in supporting individuals with Down syndrome in making informed decisions.
In recent years, there has been a growing awareness and advocacy for the right to legal capacity for individuals with Down syndrome. Campaigns such as World Down Syndrome Day have highlighted the need for decision-making support and easy-to-understand communication. Supported Decision-Making (SDM) is an alternative to guardianship, allowing individuals with disabilities to retain their decision-making capacity by choosing trusted supporters, such as friends, family, or professionals, to assist them in making choices.
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Supported decision-making
The United Nations Convention on the Rights of Persons with Disabilities affirms the right of individuals with disabilities to "Enjoy legal capacity on an equal basis with others in all aspects of life" and to have access to the necessary support when exercising their legal capacity. This recognition of legal capacity is a fundamental step towards inclusivity and autonomy.
In the context of Down syndrome, supported decision-making can take various forms. For example, parents or caregivers can play a crucial role in helping their adult children with Down syndrome make informed choices. This may involve providing accessible information and offering guidance, while respecting their right to grow, learn, and make their own decisions. It is important for parents to understand that their children have the right to independence and self-determination, even as they continue to provide support and assistance.
Additionally, individuals with Down syndrome can benefit from supportive living arrangements. For instance, roommates or housemates can contribute to a positive and organised living environment, fostering independence while also promoting teamwork and strong communication skills. This balance of independence and mutual support can enhance their overall well-being and ability to make decisions.
The medical field has also recognised the importance of supported decision-making for individuals with Down syndrome. Pediatricians and physicians are encouraged to involve patients in the decision-making process, taking into account their developing capacities. This approach, known as family-centred care, leads to better patient outcomes and increased satisfaction for both patients and their families.
In conclusion, supported decision-making is a vital framework for empowering individuals with Down syndrome to make choices and lead self-determined lives. By providing the necessary assistance and resources, we can help them overcome barriers and fully participate in society. This process not only promotes their legal rights but also enhances their overall quality of life.
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Guardianship and consent
Guardianship Options:
Guardianship laws vary by state and country, but the overarching goal is to promote independence and self-reliance for individuals with special needs. In the United States, for example, Oregon law requires guardianships to encourage maximum independence, tailoring the arrangement to the individual's actual mental and physical limitations. This means that guardianship decisions are made on a case-by-case basis, taking into account the specific needs and capabilities of the person with Down syndrome.
Supported Decision-Making:
An alternative to traditional guardianship is supported decision-making. This approach recognises that individuals with Down syndrome can make decisions with appropriate assistance. It involves building a circle of support, including family, friends, and professionals, who can provide advice and guidance. This informal network empowers individuals with Down syndrome to make choices about their lives, including financial decisions, with the backing of their trusted support system.
Legal Capacity and Consent:
Legal capacity is a fundamental right recognised by the United Nations Convention on the Rights of Persons with Disabilities. It affirms that individuals with disabilities have the right to make decisions about important aspects of their lives, just like anyone else. This includes the right to control their money and property. However, many people with Down syndrome are denied legal capacity, and legal arrangements like guardianship can further limit their decision-making autonomy. It is crucial to provide accessible information and easy-to-understand communication to ensure individuals with Down syndrome can participate in decision-making to the best of their abilities.
Medical Consent:
In the context of paediatric care, physicians often rely on the proxy decision-making of parents or guardians when treating minors with Down syndrome. The American Medical Association's policy encourages doctors to seek assent from select patients, in addition to the informed consent of their parents. This recognises the developing capacities of adolescent patients like Jose, who, despite having Down syndrome, should not be dismissed from participating in decision-making about their care.
Family-Centred Care:
Family-centred care is a philosophy that acknowledges the primary role of the family in supporting a child with special needs. It involves recognising and building on family strengths, respecting cultural diversity, and supporting family choices regarding care. This approach leads to better patient outcomes and enhanced satisfaction for both patients and their families. However, it is important to note that family-centred care does not condone abusive or neglectful decisions made by family members.
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Family-centred care
Many people with Down syndrome are denied legal capacity, with legal arrangements such as guardianship preventing them from making their own decisions. However, the United Nations Convention on the Rights of Persons with Disabilities affirms that people with disabilities have the right to "Enjoy legal capacity on an equal basis with others in all aspects of life". This includes the right to control their finances and property. With the appropriate support, people with Down syndrome can make decisions about their lives.
The family physician's holistic approach is fundamental to effective care for adults with Down syndrome. It involves addressing the diverse health needs associated with the condition, including routine health screening for conditions such as sleep apnea, hypothyroidism, and dementia. Additionally, family physicians play a vital role in promoting good dental hygiene, communication skills, and social skills, all of which enhance independence and social interaction.
To implement person-centred care, collaboration among healthcare professionals, support workers, and health and social care providers is key. This collaboration ensures that individuals with Down syndrome receive comprehensive support that addresses their complex healthcare needs while respecting their inherent capabilities. By focusing on strengths and adopting an inclusive perspective, individuals with Down syndrome are empowered to reach their full potential and achieve their goals.
Person-centred approaches actively involve individuals in decision-making, ensuring their voices are heard and choices respected. This empowers individuals to make decisions about their lives and provides the necessary support to achieve their objectives. By spending time with the individual and understanding their unique needs, abilities, and preferences, support workers can create customised strategies for education, healthcare, and daily activities, fostering an environment that enables individuals to thrive.
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LPAs and attorneys
A Lasting Power of Attorney (LPA) is a legal document that allows an individual (the 'donor') to appoint one or more people (known as 'attorneys') to help make decisions or make decisions on their behalf. This is particularly important in the event of an accident or illness that leaves the donor unable to make their own decisions. It is important to note that the donor must be 18 or older and have the mental capacity to make an LPA.
There are two types of LPAs: the Property and Financial Affairs LPA, and the Health and Welfare LPA. The former allows attorneys to handle financial and property-related matters, such as bills and taxes. The latter addresses decisions regarding medical treatments and daily care, including the daily routine, such as washing, dressing, and eating. It is important to select trustworthy attorneys who understand their duties and respect the donor's wishes. Discussing intentions and preferences with them in advance is crucial.
The registration process for LPAs involves choosing an attorney, filling out forms to appoint them, and registering the LPA with the Office of the Public Guardian. The registration fee in the UK is typically £82, unless a reduction or exemption is granted. The process may take 8 to 10 weeks if the application is error-free. It is recommended to register LPAs immediately upon completion to avoid delays when they may be needed. Attorneys are expected to act within the limits of their authority, and any concerns about their actions can be reported to the Office of the Public Guardian for investigation.
Regarding individuals with Down syndrome, the United Nations Convention on the Rights of Persons with Disabilities affirms their right to "Enjoy legal capacity on an equal basis with others in all aspects of life" and access the necessary support to exercise this capacity. Legal capacity refers to the recognition of an individual's rights, including the right to make decisions about important aspects of their lives. While individuals with Down syndrome may require appropriate support to make decisions, they should not be denied legal capacity without proper evaluation.
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Frequently asked questions
Mental capacity is the legal term used to refer to a person’s ability to understand and make decisions. To make a decision, one must be able to understand all the information that is relevant to the decision.
Legally, we must always start with the presumption that a person with Down syndrome has the capacity to make their own decisions unless it can be shown that they lack the ability to do so.
Parents and caregivers should support individuals with Down syndrome in making their own decisions. They can help by presenting information in a different or more suitable way, using easy-to-understand language, or discussing decisions in a comfortable environment.
In the case of medical treatment, if an adult with Down syndrome is not competent to give informed consent, a guardian may need to be appointed to make decisions on their behalf. This guardian is often a parent, sibling, or trusted friend.
Yes, people with Down syndrome can make decisions about their lives with appropriate support. They have the right to control their own money and property and make choices about where to live and how to manage their finances.
