Prepared by Erin Basler, MEd
People with disabilities are 3 times more likely to experience serious violent crime than those without disabilities. The rates of victimization increase to 7 times the average when the person has an intellectual or developmental disability (IDD)(Smith, Harrell, Judy, 2017).
Although traditionally viewed as separate issues, the values inherent to Domestic and Sexual Violence (DSV) services and supports for people with IDD are aligned. Both fields need to balance autonomy in decision making (referred to as Empowerment Model in DSV work and Self-Determination in the disability field) and personal safety. When looking at the intersection of DSV and people with IDD, autonomy and safety can seem like competing priorities.
Currently, nationwide and especially in Massachusetts, the two fields are beginning to focus on access and inclusion at the intersection of DSV and IDD supports. The following issues require more exploration to balance autonomy and safety in a meaningful and intentional way.
Guardianship (of an adult) is put into place when a person is deemed incompetent by a judge. For someone to make decisions on behalf of an adult with IDD, that person must be named in a guardianship decree. If a guardianship decree is not in place, at the age of 18 a person is considered competent until proven otherwise.
In Massachusetts two types of guardianship exist:
- Plenary (of the person) Guardians typically make medical and personal decisions for the incapacitated person. These decisions include medical and surgical consents, admission into rehabilitative services, participation in recreational services, and decisions on residence.
- When appointing a Limited Guardian, judges will outline the specific duties of the guardian within the decree. Examples of limited guardianship include medical proxies, who handle medical decision making only, and representative payees, who manage financial obligations.
A model that is gaining traction is Supported Decision Making, in which the person with IDD selects a number of trusted people in their life to consult and offer advice.
A lack of clarity remains about the role of plenary guardians in the provision of DSV services, particularly where the services require some form of legal consent. Some examples of this issue include releases of information and consent to services. One area that highlights the struggle between safety and autonomy is medical treatment after a sexual assault. Some of the questions that go unanswered have long-lasting implications: ● Is the sexual assault forensic kit considered emergency care? ● Are medical professionals legally liable if they fail to obtain legal consent from a guardian? ● Does the guardian need to consent to the collection of evidence? ● Is the evidence void if it was obtained without guardian consent? ● Can the person with IDD override guardian consent by deciding to seek or refusing medical treatment? Consent Legally, the capacity to consent to sexual activity is assumed of all adults and contains 3 components: knowledge (e.g. mechanics and awareness of the
act), understanding of the meaning and context (e.g. that an act is sexual), and voluntariness. People with IDD are often restricted from exercising their rights to make major decisions in their lives, develop friendships, and build long-lasting relationships. The protectionist arguments for limiting consensual sexual expression are linked with the desire to ensure safety. However, capacity to consent is not a fixed status because education and training can increase knowledge and understanding, aligning autonomy with education support for taking risks and making mistakes. Issues atthe intersection of DSV and IDD We know that sexual violence against people with IDD is significantly higher than the average and we know that prevention education can reduce rates of abuse. Many people with IDD are not provided with the same access to supplemental education for typical students. Many DSV organizations partner with schools to provide healthy relationships and violence prevention education. Few of those partnerships include information that is adapted for diverse learners. Additionally, adults with IDD tend to have very limited access to options even if they are in control of decision making. Many of the factors that increase risk are based in the ability to give or not give consent. Mandated Reporting Mandated reporting laws vary throughout the US. People with disabilities are typically covered either under a blanket “vulnerable adults” statute or a disability-specific one. These laws are designed to ensure the protection of people with disabilities and to respond to abuse allegations quickly. In Massachusetts, most of the professionals that adults with IDD come into contact with are Mandated Reporters and bound to report the reasonable suspicion of abuse to the Disabled Persons Protection Commission.
Issues atthe intersection of DSV and IDD One of the main tools in DSV work is the safety plan. A safety plan outlines the ways someone experiencing violence can safeguard against abuse and can cover a range of topics from available support and resources to a coordinated strategy for leaving. The process centers the person experiencing violence as the expert in the nuances and risks in the process and begins to restore their control. Current mandated reporting procedures don’t begin safety planning early enough in the reporting process. Some states have addressed this by exempting DSV advocates from mandated reporting. Others put the onus for investigation on the individual agencies where abuse is reported and only request documentation of the report. Massachusetts law provides the ability for a person with IDD to alleviate the mandate to report if that service provider would be bound to confidentiality when working with someone without a disability. However, this requires the person with IDD to understand that they are experiencing abuse prior to disclosing and explicitly reclaim confidentiality - a difficult task when many people with IDD haven’t received accessible education about healthy relationships, consent, human rights, or mandated reporting. In Massachusetts In Massachusetts, there are a number of organizations and stakeholders involved in increasing access, safety, and autonomy for people with IDD. ● There have been two state-wide convenings about sexuality education for students with IDD. ● Several multi-agency collaborations have been funded through the Office on Violence Against Women grant program focused on survivors with disabilities.
● Policy at both the Department of Public Health and the Department of Developmental Services has shifted to center access and self-determination in services. ● There are multiple chapters of the Rainbow Support Group, an LGBTQ organization by and for people with disabilities. ● The Disabled Persons Protection Commission has a separate Sexual Assault Response Unit that provides wrap-around case coordination for people with IDD who have experienced assault. References Nancy Smith, Sandra Harrell, and Amy Judy. How Safe are Americans with Disabilities? The facts about violent crime and their implications. New York: Vera Institute of Justice, 2017