Financial Security and Financial Abuse Prevention Among Persons with Intellectual and Developmental Disabilities

Prepared by: Virginie Cobigo and Golnaz Ghaderi

Open Collaboration for Cognitive Accessibility and University of Ottawa 

Contact information: Virginie@OpenAccessibility.ca

Effective policy measures are essential to create an inclusive financial landscape:

Cognitively Accessible Banking Services: Integrate evidence into the development of Canadian accessibility standards to make banking services cognitively accessible.

Promotion of Autonomy: Regulatory systems must recognize the capability of persons with intellectual and developmental disabilities to manage their finances with the necessary support, emphasizing their right to autonomy.

Accessibility and Accommodation to Support Autonomous Decision-Making: Before determining a lack of capacity, regulatory frameworks must explore accommodation options up to the point of undue hardship, ensuring the preservation of individuals’ rights.

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Financial Security and Financial Abuse Prevention Among Persons with Intellectual and Developmental Disabilities

Rationale

Article 12.5 of the UN Convention on the Rights of Persons with Disabilities (CRPD) stipulates that: “States Parties shall take all appropriate and effective measures to ensure the equal right of persons with disabilities to own or inherit property, to control their own financial affairs and to have equal access to bank loans, mortgages and other forms of financial credit, and shall ensure that persons with disabilities are not arbitrarily deprived of their property.“ Nevertheless, many individuals with intellectual and developmental disabilities have limited control over their finances, and are often under strict expenditure control. 

The ability to exercise legal capacity on an equal footing with others, and the right to use the necessary supports to exercise legal capacity are also covered under Article 12 of the CRPD. Nevertheless, persons with intellectual and developmental disabilities are at risk of having their legal capacity taken away, leaving caregivers and family members to act on their behalf.

Legal capacity guarantees that an individual is acknowledged by the legal system, enabling them to make decisions regarding their own life, exercise their rights, navigate civil and court proceedings, engage in contracts, and advocate for themselves.

Freedom from exploitation, violence and abuse is covered under Article 16 of the UN Convention on the Rights of Persons with Disabilities (CRPD). Persons with intellectual and developmental disabilities are four times more likely to experience abuse, including financial abuse, compared to those without a disability. Financial abuse against individuals with intellectual and developmental disabilities tends to be chronic and more severe compared to the general population. Individuals with intellectual and developmental disabilities who are the victims of abuse may experience mental health problems, nightmares, posttraumatic stress disorder (PTSD), self-harm, and suicide attempts. Most often, financial abuse is perpetrated by paid caregivers and family members who may be inclined to overprotect individuals they perceive vulnerable to exploitation and overlook their right to self-determination. 

Financial abuse is taking someone’s money or property without permission; withholding or limiting money to control someone; pressuring someone to sign documents; and forcing someone to sell things or change a will, as well as theft and fraud which are considered as crimes. 

The intent of this Policy Brief is to support the Government of Canada in its effort to develop regulations under the Canada Disability Benefit Act (CBD). The act has a goal to reduce poverty and improve the financial security of working-age adults with disabilities. However, to do so, the risk of financial abuse must be taken seriously, and policy and practices put in place to reduce this risk.

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Why are persons with intellectual and developmental disabilities at risk of financial abuse?

Lack of accessibility of banking services

Individuals with intellectual and developmental disabilities report uncertainty regarding how to access their money and financial accounts, and they encounter barriers accessing and utilizing banking services. Therefore, they rely on others to manage their finance and use banking services, which contributes to the lack of control they exert on their financial affairs. Their dependence on others also increases the risk of experiencing financial abuse. 

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Direct funding and risk of exploitation

In many jurisdictions, persons with intellectual and developmental disabilities have access to direct funding programs (e.g., the Passport Program developed by the Ontario Ministry of Children, Community and Social Services), which offer them a funding opportunity to hire support staff and purchase services on their own. Nevertheless, researchers looking at similar programs (e.g., in the U.S., Ireland, the UK, and Australia) have raised concerns that direct funding may increase the risk of financial exploitation. Direct funding creates a support system that is less structured than before and where people might be lured to direct their funding towards fraudulent service providers. To our knowledge, no Canadian study exists to monitor positive outcomes and adverse effects of direct funding. 

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Unclear definitions of financial abuse

Individuals with intellectual and developmental disabilities who have experienced abuse indicate that when they reported incidents of abuse, others did not support them, and in fact they were dismissed as they were believed to be overreacting by others. Current definitions of financial abuse appear insufficient to capture chronic abuse and situations of financial abuse that result from authoritative and overprotecting caregiving practices. When working with individuals with intellectual and developmental disabilities, it is crucial to balance protective practices and opportunities for them to become independent. However, creating such a balance might be complicated, when expectations and guidelines are ambiguous regarding what constitutes an abusive situation for persons with intellectual and developmental disabilities. Similarly, risk management can be a challenge for support staff. These professionals are required to facilitate positive risk-taking among individuals with intellectual and developmental disabilities and prevent abuse. In other words, while support staff attempt to assist individuals with their financial management, they may limit access to their funding with the intent of safeguarding them from exploitation. 

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Lack of best practices, training and education for support persons

Family members and paid caregivers often provide tremendous support to persons with intellectual and developmental disabilities in managing their finances, making choices, and exploring options. However, they report: 

• Having difficulty assessing the numeracy skills and financial literacy of persons with intellectual and developmental disabilities. 
• Experiencing difficulty supporting individuals with severe support needs (i.e., those with more complex needs and more severe impairment in cognitive and communication skills) regarding money and finance.
• Lacking information and direction provided as part of the direct funding programs.
• Not wanting to be involved in providing money advice due to the risk of being accused of financial abuse. 

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Lack of education and support for persons with intellectual and developmental disabilities

Persons with intellectual and developmental disabilities have expressed their desire to have more autonomy and control over their finances and to learn how to protect themselves from financial abuse. Nonetheless, it is unclear how individuals with intellectual and developmental disabilities interpret abusive situations and whether they identify danger in real-life situations. Therefore, educating individuals with intellectual and developmental disabilities is of utmost importance. Education should cover identifying harm and danger in abusive situations and implementing interventions to improve their decision-making skills in such situations. 

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Implications for Practice

A clear definition of financial abuse is needed along with the development of best practices and training for paid caregivers and family members. Definitions must explicitly include chronic abuse, including from caregivers and family members, while recognizing the need to balance promoting self-determination and caregivers’ duty to protect. 

Effective reporting systems and reactive processes should be put in place, as both persons with intellectual and developmental disabilities and direct support staff members report low confidence in reporting systems and the likelihood that organizations will act when abuse is reported. Effective systems and processes must be co-designed with direct support staff members since direct funding, precarious employment and under-resourcing in the sector require the consideration of organizational constraints. 

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Implications for Policy

The development and implementation of Canadian accessibility standards must integrate evidence to make banking services cognitively accessible. In previous research, we highlight the need to develop guidelines to make authentication methods cognitively accessible. 

Persons with intellectual and developmental disabilities must be considered as capable of managing their finances, with required support. Regulatory systems must affirm their right to autonomy. Moreover, before determining that a person lacks capacity, one has a duty to explore accommodation options to the point of undue hardship. 

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Overview of research

The information provided in this document is based on the following: 

• A review of the scientific literature on abuse and financial abuse among persons with intellectual and developmental disabilities. 
• A study investigating how persons with intellectual and developmental disabilities define and analyze financially abusive situations, and how they would feel and act in situations that they consider abusive. We presented three short stories consisting of different types of financial abuse to 12 persons with intellectual and developmental disabilities and asked them questions to investigate their perspectives regarding such situations. Full report available here: https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.13196
• A study investigating how employees of agencies providing support to persons with intellectual and developmental disabilities define and analyze financially abusive situations, and how they would feel and act in situations that they consider abusive. Fourteen support providers participated in a semi-structured interview where they were asked to reflect on five vignettes illustrating different forms of financial abuse. Full report available upon request. 

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Revelant references