Case Preparation

Legal and Reproductive Rights

Many potential barriers stand between individuals with intellectual disabilities and health care providers. Examples of these barriers include negative biases, unfamiliarity with the intellectually disabled, and difficulty communicating effectively with each other (Grabois, 2001). Appropriate reproductive health services for intellectually disabled women are also inadequate.  Fundamentally, women with intellectual disabilities often lack knowledge about sexuality. They are often excluded from discussions about sex and reproduction during their school years (Smeltzer et al., in press). In addition, many health care providers fail to discuss the matter due to the assumption that the women are asexual (Grabois, 2001). A lack of reproductive knowledge can lead to unplanned pregnancy. It is important that all women, regardless of intellectual status, have access to reproductive services. Indeed, all women are guaranteed this right under the Americans with Disabilities Act (ADA).

In 1990, the ADA legislated equal rights for individuals with disabilities with respect to employment, public service, and health care services (Gooding, 1995). The ADA establishes the fundamental expectation that should ensure patient autonomy, proper health care treatment, and reproductive services for all people (Judge, n.d.)  Under the ADA, health care providers are legally obliged to provide equal treatment to disabled individuals and if it is not currently available, to make the necessary accommodations in order to provide equal treatment.

Autonomy, “which focuses on self-governance, has been a guiding value in health care since the late 1960s and early 1970s.  Today, in nearly every state in the United States, a Patients’ Bill of Rights legally establishes clients’ rights to accept or refuse any medical treatment” (Veach, LeRoy, & Bartels, 2003).  Autonomy means that a patient understands and has control of medical decisions that affect him/her.  The National Society of Genetic Counselors Code of Ethics states that counselors should “enable their clients to make informed decisions, free of coercion, by providing or illuminating the necessary facts, and clarifying the alternatives and anticipated consequences (NSGC).  For a patient to give informed consent for medical treatment, he/she must understand in broad terms what the treatment will involve (Gooding, 1996).  The minimal amount of information that should be provided to the patient about treatment is: (1) the risks and benefits; (2) any side effects or complications; (3) likelihood of improvement with and without and; (4) any alternative methods (Levy et al., 1996).

Individuals have the right of informed consent as long as they are competent decision-makers (Parry & Phillips, 2002).  As a general rule, individuals with intellectual disabilities capable of decision making can be expected to have the right to informed consent.  Of course, there is great variation from person to person in the capacity to make decisions, which may also vary from decision to decision (Levy, 1996).  It can be difficult to test for competent decision making capabilities and a definite measure is not available.  Incompetency under one civil standard may have little relevance to incompetency under another civil mental health standard, and legal decisions may vary depending on the issues at hand and/or by jurisdiction (Parry, 2002).  Unless determined otherwise, every adult is presumed to be competent and to have the right to informed consent (Levy, 1996). The right to informed consent includes the right to be free of influence from others by means of coercion, fraud, duress, force, or deceit (Parry, 2002). In addition, the HIPAA regulations define many aspects of patient’s privacy; individuals with disabilities are subject to the same regulations as the general population for all health care (HIPAA Privacy Rules).

If an individual cannot make autonomous decisions, his/her decisions are typically made by a guardian.  There are different levels of guardianship for persons with intellectual disabilities.  Guardianship can be temporary to permanent, with an extensive scope that includes all decision-making rights, or one that is limited to specific rights such as protecting the individual’s finances (Parry, 2002).  Guardianship laws vary from state to state. For example, some states have established advocacy groups to enhance individual decision making when necessary.  New York State has a Surrogate Decision-Making Committee for individuals living in state-run facilities who cannot make their own decisions (Levy, 1996).  Individuals also have the right to appoint a person of their choice as their health care proxy.  Documentation is required to appoint the specified person who will act as a proxy if healthcare decisions are needed (Jetty, 2005). A health care proxy is not a permanent assignment.  Proxy status can be revoked by the protected individual or by a third party if the proxy is unable to fulfill the appropriate obligations (Jetty, 2005). The opportunity to appoint a health care proxy is intended to provide a trustworthy advocate for the individual with disabilities. However, one study showed a tendency for proxies to overestimate the level of impairment and to underestimate health-quality of life for people with disabilities (Andreson, 2001). The study indicated that proxies tend to misjudge the severity of the disability and the well-being of the person they make decisions for. When a client is not in control of his/her own decisions, medical diagnosis and treatment regimes become more complex.  It is important for the health care proxy to remain impartial in terms of personal perspectives, and committed to ensuring outcomes that are in the best interest of the client.

Women of minority groups have been targeted by racist sterilization groups (Socialistworker, 2004).  Women with disabilities have reported being offered immediate termination of pregnancy based on the assumption that they do not want to be pregnant or should not be having children (Carty, 1998).  It is important to avoid suggesting directly or indirectly that a woman with a disability is unfit and irresponsible for considering childbearing (Smeltzer, 2007). Legally, all women have the right to decide what happens to their body. In 1973, a Supreme Court ruling gave women the right to terminate pregnancy (USA, 2006).  In addition, the ADA prohibits physicians working in private offices and publicly-funded clinics from engaging in actions that may prevent women with disabilities from obtaining equal reproductive health care services (Grabois, 2001). Therefore, women with disabilities are subject to the same rights to abortion as all women.

Women with intellectual disabilities who want to be parents may have difficulty maintaining custody of their children or they may encounter other threats to their parental rights (Judge, n.d.).  According to the ADA, legally disabled parents have right to the same services, programs, and activities as the general public.  Parents with mental disabilities may require modified services to assist them in regaining custody or preventing termination of parental rights.  They should be able to assert an ADA claim if the state fails to make needed and reasonable modifications in their services (Judge, n.d.).  Other laws pertaining to the issue include the Rehabilitation Act Section 504 and the Federal Adoption and Safe Families Act (ASFA), which require that reasonable modifications be provided to ensure individuals with disabilities have equal opportunity to participate in and benefit from programs and activities that receive public funding (Judge, n.d).

 

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