Definitions and Legal Status
The Adult Guardianship and Trusteeship Act R.S.A. 2008, c. G-2.2, refers to an adult "who has a decision-making disability" as having "an impairment of the mind or brain or the area of the human mind or body associated with cognition or communication. While this definition is clear, it does lead to many questions about what "impaired" means and how this impairment causes the decision-making challenges that are required.
Other words used in the law to encompass an adult with a decision-making disability include "adult with a disability", "adult with a mental incapacity", "person with a disability" and "mentally incompetent".
The law makes a big distinction between adults and minors, and between "incapacity" and "disability" . An adult may be "incapable of making a decision" but the law would not classify that adult as having a "mental incapacity" or "disability" if they are only temporarily unable to do so. They would, for physical injury that is temporary, be considered "incapable of giving, refusing, withdrawing or revoking consent" and when able, regain their "legal capacity" to make a decision.
The law also makes distinctions and different types of laws apply if an adult is under guardianship, has a guardian of property, a trusted person or the decision-maker under a Personal Directive.
While the definitions are all there, it can be helpful for determining if there are legal issues that need to be addressed to consult a lawyer specializing in adult guardianship law in Alberta.
Guardianship or Independent Living?
In order to legally benefit from the guardianship of parents, an adult with a disability must have been deemed as lacking sufficient mental or physical capacity. The Centers for Disease Control and Prevention (CDC) explains that a parent has the ability to obtain guardianship of his or her disabled adult child through a few different methods. In particular, if the adult child is incapable of consenting to treatment or understanding the nature and risks of it, a court may grant a declaration of incapacity and find the adult dependent in need of guardianship. If the adult child cannot comply with the fundamental requirements of living independently without guardianship, then it may be granted.
While a parent searching for legal rights for disabled adults living with them may be relieved to obtain guardianship of their adult child, the parent should also know the consequences. A person under guardianship is no longer given the same legal rights and freedoms as an independent adult. The guardian effectively takes over the role of making decisions for the individual with the disability. Fortunately, a parent can maintain some degree of independence by obtaining less than full guardianship. This allows the adult with a disability to retain some choices in his or her own agency but nevertheless provides the disabled adult with protection.
Despite some restrictions placed on the adult with a disability, this person still retains certain legal rights while under guardianship. For example, the individual under guardianship may still have the right to vote, the right to enroll in the military, the right to marry, the right to enter into a living arrangement with a partner or friend, and the right to consent to his or her own medical care.
Financial Entitlements and Disability Benefits
When an adult disabled child continues to live at home with their parents, there are certain financial rights to be aware of. In many cases, living in the family home can provide a cost-effective and convenient way to manage a disabled adult child’s finances. At the same time, however, these financial rights can be severely affected by certain conditions, such as Social Security benefit eligibility or Medicaid qualifications. Because of these conditions, individuals should be aware of different programs that can affect the financial rights of disabled adults who live at home. These programs include Supplemental Security Income (SSI), Medicaid and the Program of All-Inclusive Care for the Elderly (PACE). In this section of the article, we will discuss these three programs:
Supplemental Security Income (SSI) In most circumstances, receiving disability benefits reduces the work of certain benefits, such as Supplemental Security Income (SSI) for adults and children with disabilities. For individuals eligible for both SSI and Social Security Disability Insurance (SSDI), the SSDI payment amount is usually added to the monthly SSI check. If they are just SSI recipients, they would receive a monthly payment from SSI, as long as their total countable income only equals a certain limit, which is set at $735 for an individual. A disabled adult’s personal assets must also be below $2,000 at all times to qualify for SSI benefits. To become eligible for an increased benefit amount, the adult must be able to establish that he or she has limited income and financial resources, which are also referred to as being "deemed eligible." The Social Security Administration will deem the parents’ asset level and countable income, as well as the living arrangements of the adult, when determining the SSI benefit amount. This means parents and their adult disabled child must live in a home together to receive full benefits. However, the benefit amount is typically reduced if the adult disabled child lives at home with his or her parents. Even still, the money received from the SSI benefit can be used to pay for the disabled adult’s needs, including housing, basic living expenses and education costs.
Medicaid for Disabled Adults Medicaid is a federal-state program designed to provide health care and other basic living services for disabled individuals with low incomes. Medicaid eligibility is available to low-income individuals who meet the required income limits. For the purposes of Medicaid, the disabled adult cannot contribute to the household income until a full-time job is obtained, at which point the disabled adult may then contribute. Disabled adults can live at home with their parents, but the parents’ income may be considered when applying for Medicaid. However, when a disabled adult reaches age 21, the parents’ income needs to be excluded, even if the disabled adult continues to live at home. Another alternative for caregivers of disabled adults is the PACE program, which stands for the Program of All-Inclusive Care for the Elderly. This program helps to provide health care and services for individuals over 55 years of age, including physical and occupational therapy, nutritional counseling, adult day-care and in-home personal care. Medicaid pays for the full cost of the PACE program.
Privacy and Freedom from Parental Control
Provided that he has the capacity to understand and appreciate these legal rights, the disabled adult may also continue to have a right to privacy and autonomy at home. Within the limits of the Parents and Guardianship Law, he may exclude people from entering his apartment at his own will, or in other words, may decide who may enter and who must be excluded from his dwelling. This is true even when he resides with his own parents, who, under the Parents and Guardianship Law are presumed to be his guardians, as explained above. When it comes to decision making, the legal presumption may be in favor of the parents’ authority to make decisions for their own child, although in a limited manner only. For instance, when the disabled adult is lacking legal capacity, his parents or guardian may ordinarily decide on his behalf in health matters, such as deciding what medications to use or what medical procedures to undergo. Yet, when the disabled adult’s condition allows him to understand the situation and express his own wishes, his parents should give his wishes full consideration before taking an action on his behalf. Related to privacy and autonomy is the right to choose or decline to have visitors. While parents normally have the legal authority to choose the visitors who come to meet with their disabled child at home, they should avoid preventing favors from being done to their child, such as refusing a visitor’s request to buy the disabled adult a gift. The parents’ right to control their child’s communications should not be used to prevent gifts or to stop friends from calling their child at home. For example, the parents normally have the right to choose the disabled adult’s medical doctor, yet they cannot interfere with that disabled adult’s right to have his own doctor visit him at home as well.
Making Medical Decisions as an Adult
The right to choose one’s healthcare provider is a potential flashpoint in many families. Parents of very young disabled children have input into their care; it is less clear to what extent adult disabled children have the same rights. The manner in which a state allocates decision-making responsibility (DSR) among adult children is determined by its laws, and while statutory language may be straightforward, its application to individual circumstances tends to be less so. In assessing DSR, most states consider capacity and presumed capacity. For example, in Nevada, NRS 449.328 grants "a person who is at least 18 years of age and who is a resident of this State" the right to "choose his or her health care provider." Subsidiary sections of that statute go on to define "health care provider" as "a hospital, physician, osteopathic physician, dentist, dental hygienist, chiropractor, podiatric physician, nurse practitioner, optometrist, chiropractor and physical therapist." NRS 449.320(1). A "resident" is defined as a "natural person licensed or otherwise authorized by the State of Nevada or any political subdivision thereof to engage in the practice of medicine, dentistry or other health care in this State," or "a person who resides in this State for other than temporary purposes, with the intent of making his or her home here and not elsewhere, including a homeless person." NRS 449.302(1) and (2). The law thus appears to assume that all residents over age 18 can make their own choices regarding their healthcare provider. However, a person "who is not competent to speak for himself or herself, including an infant, an insane person whose insanity has not been specifically adjudicated by a court, a person who is partially mentally incompetent and a person who is the subject of a protective order" is deemed to lack capacity to give informed consent under NRS 449 . 730, which establishes certain regulatory protections and considerers the patient’s best interests. Similarly, California Civil Code Section 679.6 states that "A natural person of 18 years of age or older has the right to choose his or her health care provider." Cal. Civil Code Section 679.6(e). "Health care provider" is defined as "a person, hospital, institution, or other entity, governmental or non-governmental, providing health care." Cal. Civil Code Section 679.1(a). "Health care" means "any preventive, diagnostic, therapeutic, curative, palliative, rehabilitative services, or procedure, including self-care, furnished, or contracted for by any provider of health care." Cal. Civil Code Section 679.1(b). Here in Florida, Chapter 765 of the Florida Statutes provides for substituted consent to medical treatment, and an adult’s right to consent depends on whether he or she lacks capacity for informed consent. § 765.401(1), Fla. Stat. (2014). Specifically, a physician can rely on the consent or permission given by an "adult who has not been found by a court to be either partially or totally incapacitated or a person selected by that adult while competent to alternatively direct or consent to medical treatment." Id. In short, Florida law assumes that an adult has the ability to consent or refuse consent to medical treatment unless he or she has been found incapacitated by a court. An adult, "for whom a guardian has not been appointed by a court, may be considered competent unless or until a court determines the adult to be incapacitated." Cross v. CSX Transp., Inc., 412 F.Supp. 2d 1159, 1173 (M.D. Fla. 2005) (citation omitted).
Legal Protections against Discrimination
Adults with disabilities have the right to be free from discrimination by their parents, extended family, caregivers, and other such individuals. Importantly, these provisions also apply to discrimination on the part of financial institutions, government agencies, and professional service providers. A primary means of prohibiting discrimination in the nation is the Americans with Disabilities Act, which was signed into law in 1990, as amended by the ADA Amendments Act of 2008. While many of the provisions of the ADA address the services, venues, and products of businesses, it also prohibits acts of discrimination against persons with disabilities from individuals, families, and caregivers. As such, the ADA expressly prohibits questions relating to disability by any covered entity, including family members and other caregivers, for the purpose of providing an accommodation or special service. In addition, the Fair Housing Amendments Act prohibits discrimination against persons with disabilities in residential property acquisition and financing, including mortgage lending and appraisals. Most states have their own laws that mirror the ADA and Fair Housing Amendments Act and provide additional remedies and protections against discrimination.
Living Arrangements and Housing Statutes
If a mentally disabled adult resides in the house of his parents, what are his housing rights in New York? A related question is whether the value of the home occupied by a mentally disabled adult residing with his parents should be counted in the SSI calculation as income in-kind (i.e. not as income). For the answers to these questions we turn to the SSI regulation, section 20 C.F.R. § 416.1105.
Section 416.1105(a) provides that "[a] person is legally eligible for SSI benefits when both the following apply: (1) he or she lives in the United States, and (2) he or she is aged 65 or older, or has a physical or mental condition (other than one resulting from his or her own misconduct) of at least long-continued and indefinite duration which results in functional limitations so severe that he or she is unable to do any substantial gainful activity."
Subsection (b) of section 416.1105 goes on to define residence in terms of the relationship between the beneficiary and the householder. Under subsection (b), "[i]f a person is living in the household of another as the child, spouse, or parent of that household, we consider the person to have the same residence as the household member. This applies even if the person is away from the household temporarily but intends to return there." Section 416.1105(b) further provides that "[w]e may consider you to have the same residence as your parent unless he or she is estranged from you for a period of at least 60 days. (For estrangement, see §416.1410). You will still be considered to have the same residence as your parent if he or she is living outside the United States."
Subsection (c) contains additional rules for the consideration of homeownership, "If you (or your spouse) own the home in which you live and you use the home as your principal place of residence, the home is not income."
Legal Aid and Advocacy Groups
Plenty of legal resources can assist disabled adults and their families. For example, the National Association of Rights Protection & Advocacy (NARPA) is a nationwide organization that advocates for people with disabilities. It promotes and protects the legal and human rights of the disabled, improves accessibility to public services, and advances quality of services and opportunities in life. NARPA provides a comprehensive list of resources , including chapters within each state.
Legal services also help the disabled on a regional basis. The Legal Services Corporation’s Special Legal Programs provide civil legal assistance to the lower-income disabled. As of June 2019, it has already distributed $703 billion in grants to legal aid organizations that provide free assistance to the indigent. Whether the disabled individual is a child or adult, there will be a supportive network of attorneys, non-profit organizations and others dedicated to upholding the rights of those with mental or physical disabilities.