Citizens of the United States obtain rights in three different ways: they are enumerated in our Constitution and Bill of Rights; they are enacted through legislation (local, state or federal) and codified in regulations that further explain or interpret the legislation; or they are the result of court decisions that further define our rights, how they should be interpreted and commonly understood.
Citizens with disabilities have the same rights as citizens who do not have disabilities, among them the right to vote, to own property and dispose of it as they wish, the right to marry, the right to privacy, the right to worship, and freedom of speech, and the right to due process.
After World War II and the Nuremberg Trials, an important concept of informed consent became the standard when medical or other interventions are recommended. This means that a person needs to consent to treatment and needs to understand both the benefits of the treatment and any risks that might derive from the treatment. If we go in for surgery, we are asked to sign a consent form that details what could happen to us as a result of the surgery or of medications that are prescribed. Informed consent also applies to issues like behavior management interventions.
One issue that has involved informed consent and is the source of some tension at the moment is the issue of guardianship. In New York State, the law presumes that anyone who is over 18 can make his or her own decisions. Some individuals with intellectual disabilities may need support in order to make decisions about health care, whether or not to have children, or other life choices. Parents can retain the power to make these decisions for their adult children with intellectual or developmental disabilities if they go to court and petition to remain their adult child’s guardian. Sometimes parents are awarded limited guardianship – they can make some decisions for their adult child with a disability, but not all decisions. Recently a new idea – supported decision-making – is gaining ground. The idea is that the person appoints someone he or she trusts to assist in making important decisions without giving up her or his rights.
When a person with a disability enters public care (or private care) they often give up some rights or parts of rights in order to be eligible for the care they receive. For example, if a person is moving into a group home or apartment program that is run by a service agency, s/he might be giving up some rights to privacy or self-determination in order for the service agency to provide what’s needed. For example, if the person is living with six people and there are two staff members, and five of the residents want to go swimming on Tuesdays, the person who would prefer to stay home may end up going swimming because there is no one to stay home with him or her. Or if the person is used to having a private room s/he may be living with a roommate, at least for a period of time. These issues are typically spelled out so that they are clear before the person moves from one setting to another. While the goal of these organizations should be to provide as much choice as possible – to provide services in the ‘least restrictive environment’ possible, practical issues sometimes mean choices may be limited.
There are five basic laws and regulations that affect disabled children and adults. These are explained below:
The Rehabilitation Act of 1973: Sections 504 and 508 (1973)
The Rehabilitation Act of 1973 is very important because its Section 504 mandated that any public entity receiving federal funds needed to be accessible to individuals with disabilities. Since hospitals, federal courts, transportation systems and educational institutions received federal funds, what this meant was that for the first time people who had mobility or sensory issues could take advantage of higher education or the court system, or have access to public transportation. Section 508 mandated that internal federal systems – for example, the telecommunications systems- had to be accessible. This opened the door for people with disabilities to be employed by the federal government. One of the important principles included in the Rehab Act of 1973 was the idea of ‘least restrictive alternative’ or ‘least restrictive environment.’ What this means is that when services are needed – whether they are rehabilitative or educational – they should be provided in the least possible segregated setting, and that people with disabilities should only receive segregated services when absolutely necessary. So, rehabilitation services should be provide in the community, not in segregated settings like hospitals or institutions.
PL 94-142 (1975), renamed IDEA (2004), and Every Student Succeeds Act (2015)
Public Law 94-142, the Education of All Handicapped Children Act – further modified in and renamed Individuals with Disabilities Education Act (IDEA) mandated a free and appropriate education to all children, whether or not they had a disability. IDEA expanded on this idea, and recent reauthorizations have made some improvements. Important to the original and subsequent modifications is the idea which was embedded in the Rehab Act of 1973 – the idea of ‘least restrictive setting.’ Extending this idea is the concept that the default educational setting should be one where the child with a disability is included or integrated, and only removed from an inclusive classroom for a specific, documented reason (therapy or another documented reason). Also included is the mandate for a written individualized education plan (IEP) that describes the student’s needs and the services to be provided to assist in that child’s education, due process and appeals, formalized input from parents and the student, and periodic review. Additional supports needed by the student are detailed in each student’s IEP.
The Developmental Disabilities Act (1963)
The Developmental Disabilities Act was initially authorized in 1963 by President Kennedy. It is administered under the federal Administration for Community Living (ACL). It is reauthorized periodically and changes are made depending on current needs. For example, in 1975, the State Protection and Advocacy systems were created to address civil rights violations. The Act of 1978 provided for the creation of Developmental Disabilities Planning Councils in each state. These Councils are awarded federal funds and are charged with funding pilot projects that can be widely adopted if they prove to be viable and useful. The DD Act also provided for the creation of University Centers of Excellence in Developmental Disabilities (UCEDs) which are charged with training clinicians and other staff to work in the community with individuals with developmental disabilities. Protection and Advocacy programs in each state can help with bringing legal actions in cases of violations of individual rights, but they frequently bring actions against more systemic violations of rights. Protection and Advocacy Programs address legal rights of individuals with developmental disabilities, assistive technology, voting accessibility and traumatic brain injury. You can read more about the Developmental Disabilities Act here: https://acl.gov/about-acl/history-dd-act
The Americans with Disabilities Act of 1990
The Americans with Disabilities Act of 1990 is the most sweeping legislation for persons with disabilities in the United States. The ADA was signed by President George H. W. Bush in July of 1990, and took effect two years later. The ADA and its amendments of 2008 provide for reasonable accommodation in employment, communication, transportation, and in the use of community resources, like local businesses. While the ADA lays the groundwork for forcing accessibility, it also puts the burden of complaint upon disabled citizens. While the Office of Civil Rights will investigate and prosecute violations of the ADA, reliance for identifying instances of violation rests with individuals with disabilities.
The Olmstead v L.C. Decision of 1999
The Olmstead v L.C. Decision of 1999 was a lawsuit filed by two women living in the Georgia Regional Hospital. Each of the women wanted to live in the community and in each case the professionals treating the women agreed that they would be able to do that. The State of Georgia had not placed the women arguing that their budget was inadequate to support them in the community. The case went all the way to the Supreme Court, which found that “under Title II of the ADA states are required to place persons with mental disabilities in community settings rather than in institutions when the State’s treatment professionals have determined that community placement is appropriate” and when other conditions have been met. The decision also reaffirmed that individuals with disabilities should not be excluded from life in the community but instead should be included in society. You can read the Supreme Court decision here: https://www.law.cornell.edu/supct/html/98-536.ZS.html.