Module 2- Human Rights

  1. Evolution of Human Rights
  2. Rights of Individuals Living in CILAs
    1. Confidentiality
      1. Consent for Release of Private Information
      2. Informed Consent
      3. Due Process
    2. Promoting Rights
    3. Privacy
    4. Intimacy, Sexuality and Education
  3. People First Language
  4. Individual Council
    1. Self-Advocacy
  5. What is a right restriction?
    1. Human Rights Committee (HRC)
    2. Behavior Management Committee (BMC)
    3. Guardianship
      1. Appointment of a Guardian:
      2. Power of Attorney (POA)
  6. Person Centered Planning and Rights
  7. Final Thoughts:

Evolution of Human Rights

Historically, society has tended to isolate and segregate individuals with intellectual disabilities. Many early institutions were simply warehousing people. These individuals were sent to the institution for a variety of reasons; not all of which were related to mental illness or intellectual disabilities, few ever received any form of individualized treatment or habilitation.

Because of the landmark court decision in 1970 Wyatt vs. Stickney, we recognized that persons with intellectual disability are citizens who have "rights". The case resulted in the establishment of 49 Principles of service which include the requirement to establish a Human Rights Committee to review all habilitation plans to ensure that the human rights of the residents were preserved.

It also resulted in the establishment of:

  • Qualified Mental Retardation Professionals (Now called Qualified Intellectual Disabilities Professional or QIDP)
  • A Right to Treatment
  • Staff to client ratios
  • Physical plant features/dimensions
  • Development of behavior plans

The US Constitution guarantees these rights to each citizen, regardless of ability:

  • Access to the courts and legal representation
  • Free association
  • Right to contract, own and dispose of property
  • Equal educational opportunity
  • Equal community-integrated employment opportunity
  • Equal protection and due process
  • Fair and equal treatment by public agencies
  • Freedom from cruel and unusual punishment
  • Freedom of religion
  • Freedom of speech and expression
  • Right to marry and raise children
  • Privacy
  • Right to vote

Rights of Individuals Living in CILAs

The rights of individuals living in CILAs and the rights of individuals receiving services through the DHS Medicaid Home and Community-Based Services are protected by the DHS Medicaid Home and Community-based Waiver, Rights of Individuals. (59 Ill. Admin. Code 115.250). The law requires that CILA agencies provide their individuals with a written statement describing their rights. The document should be written so everyone it protects can understand the material. QIDP's will assist the individuals to review this information at least annually.

The rights of individuals living in CILAs and the rights of individuals enrolled in DD Waiver are summarized below.

  • the use of seclusion will not be permitted
  • the right of individuals' confidentiality is protected by the Confidentiality Act
  • the right to contact (and a right to assistance to do so) the Guardianship and Advocacy Commission; Equip for Equality, Inc., Office of Inspector General, and the CILA agency's Human Rights Committee
  • the right to be free from abuse or neglect
  • the right to purchase and use private physicians and other mental health and DD professionals of their choice. The names of these professionals will be documented in their personal plans
  • The individuals' files contain documentation that they were advised of their rights and will contain justification for any restrictions of their rights
  • the individuals have a right to submit grievances and appeal decisions of the agency and other service providers. Individuals receiving Waiver services also have grievances and appeal rights detailed in 59 Ill. Adm. Code 120
  • individuals shall not be denied, suspended, or terminated from services or have their services reduced for exercising any of their rights
  • The individuals have a right to remain in a CILA unless:
    • they voluntarily withdraw
    • their medical needs cannot be met by the CILA program
    • their behavior places themselves or others in danger
    • they are transferred to a program offered by another agency and the transfer has been agreed upon by the individuals, the individual's guardian, the transferring agency and the receiving agency
    • they no longer benefit from CILA services
  • individuals have the right to live in the least restrictive environment
  • individuals have the right to services that are consistent with their needs
    • if existing programs do not meet the needs of people, service providers must seek alternatives to existing programs. Individuals cannot be limited simply due to the availability of services
  • Right to a lease, residential agreement or other living agreement if residing in a provider-owned or controlled residential setting
  • Right to privacy in their bedroom
  • Right to have a bedroom door that the individual can lock
  • Right to choose their own roommate
  • Right to furnish and decorate their bedroom
  • Individuals have the freedom and support to control their own schedules and activities
  • Right to have access to food at any time
  • Right to have visitors of their choosing at any time
  • Right to typical, normal living conditions
  • Right to dignity and respect
  • Right to freedom from discomfort and deprivation
  • Right to appropriate clinical, medical, and therapeutic services
  • Right to attend the religious worship service of their choice
  • Right to physical exercise
  • Right to manage personal money
  • Right to nutrition
  • Freedom from involuntary servitude
  • Freedom from unnecessary medication and mechanical, chemical, or physical restraints 

Organizations should protect and promote the rights of individuals served. This commitment should guide the delivery of services, supports and ongoing interactions with individuals served.


Confidentiality is required by law. The federal Health Insurance Portability and Accountability Act, known as HIPAA, mandates the way information is obtained and maintained. If confidentiality rules are not followed, legal action may occur. While on the job, if you have any doubt if something is confidential, do not share it with anyone. Wait until you receive further clarification on the information. We have all been informed about the importance of keeping private information confidential. Personal information, including, age, health diagnosis, photos, family history, etc., is all information in an individuals record that is considered confidential and should be handled on a need to know basis. If you do not have written consent to share protected information, you cannot share any information regarding health information, financial information or any other personal information.

As a supervisor, it is also your responsibility to set a good example to ensure staff do not violate the confidentiality laws. If someone begins to share confidential information with you but you do not need to know, end the conversation and inform staff of the reason. If a conversation of confidential information is occurring in a public place, move the conversation to a more appropriate environment. Remember, confidentiality is everyone's business!

Consent for Release of Private Information

Section 5 of The Illinois Mental Health and Developmental Disabilities Confidentiality Act (IMHDDCA) 740 ILCS 110/1), states that all records and communication may be disclosed to someone other than those persons listed in Section 4 only with written consent of those persons who are entitled to inspect and copy a recipient's records.

To be valid, consent must be in writing and must specify all the following:

  • the person or agency to whom disclosure is to be made
  • the purpose for the disclosure
  • the nature of information to be disclosed
  • the right to inspect and copy the information to be disclosed
  • the consequences of a refusal to consent
  • the calendar date to which consent expires, provides that if no calendar date is stated, information may be released only on the day the consent form is received
  • the right to revoke the consent at any time

For more information on the Illinois Mental Health and Developmental Disabilities Confidentiality Act (IMHDDCA) please visit

Informed Consent

When records are shared, or information requested, informed consent must be obtained. According to the Mental Health & Developmental Disabilities Confidentiality Act, the consent should be in writing and contain the following elements…

  • The person or agency to which disclosure is to be made
  • The purpose for which disclosure is to be made
  • The nature of the information to be disclosed
  • The right to inspect and copy the information to be disclosed
  • The consequences of a refusal to consent, if any
  • The calendar date on which the consent expires
  • The right to revoke the consent at any time

All consents should be written in plain, easy to understand language.

Due Process

The agency should have a formal policy by which persons served may formally complain. Due process, which is outlined in the Fourteenth Amendment, states no person shall be deprived of liberty without the process of law. The concept of due process is intended to protect people from undue restriction of rights.

Agencies must assure that a procedure concerning formal complaints exists and it conveys the procedures in writing. Further, assurances should be in place that guarantee that the action will not result in retaliation or any barrier to services. The written policy information should contain the answers to the following questions:

  • What efforts will be made to resolve the complaint?
  • What are the levels of review?
  • What are the time frames that are considered adequate to expect a result in a timely manner?
  • How does the individual access outside assistance, if desired?
  • What is the procedure for written notification regarding actions taken to address the complaint?

Complaint procedures (and forms, if applicable) should be readily available to persons served and be written in a way that is understandable. An organization may have a separate policy and procedure for grievances and appeals or may include these in a common policy and procedure covering complaints, grievances, and appeals. Written guidelines for practices include procedures for levels of review and the rights and responsibilities for each party involved. These procedures are explained to personnel and persons served in a way that meets their needs.

Promoting Rights

Questions for your agency to ask:

  • Is training about rights provided to staff?
  • What services and supports assist people to exercise the rights that are important to them?
  • Is access to legal advice and personal advocates supported?
  • How are rights issues monitored and addressed?

Rights training should be provided to persons served and should be communicated to them in a way that is meaningful. A good practice is to include rights information in an individual handbook or present it through audiotapes, videotapes, pictures and other formats. If appropriate to the persons served, it may be presented in more than one language.

Communication of rights issues should take place at every opportunity, but at least documented annually. Training includes both staff and people receiving services working together to understand rights. Rights information can be shared during any meeting related to the individual personal plan, individual's council meetings, etc.

Any discussion about rights needs to include the discussion of responsibilities that accompany those rights. Responsibilities are sometimes formally expressed and taught. However, many times this teaching is done in an informal way. Staff should always be looking for ways that people can make choices throughout their daily lives. Many opportunities for exercising choice are available every day: choices about clothing, activities and behavior.


The reasonable expectation to privacy is a constitutional right. All citizens have the right to keep certain parts of their lives private. The right to privacy includes access to time alone and keeping specific possessions and information personal. The right to privacy includes keeping specific information and possessions personal.

Privacy issues become very challenging in a group living situation, however everyone has the right to private time. Each person has specific preferences for privacy. Some people like to be alone when they are angry or upset or when they just want to relax. Other people enjoy being with others most of the time and don't need a lot of time alone. The first step in supporting the person's right to privacy is to learn what the individual's preferences are regarding private time and space. Many of the problems regarding privacy for people with intellectual disabilities lies in the difficulties in accommodating large numbers of people where bathrooms and bedrooms are shared, leaving very little space for privacy.

Staff needs to be particularly sensitive to the need for privacy in the activities and situations that require extra attention. These include such things as: grooming, dressing, receiving correction, talking about personal feelings, seeing a doctor or receiving medical treatments or medications, visiting with family and friends or when feeling angry or upset.

Intimacy, Sexuality and Education

Having an intellectual disability does not alter the right of a person to express his or her desire to have intimacy. Intimacy is very personal. It is often a reflection of a person's need for closeness with others. It is particularly difficult to judge the "appropriateness" of another's social choices. The person's desires for social relationships, marriage and potential parenthood should be understood by the organization.

People with intellectual disabilities have the right to and deserve acceptance of their sexuality. The people involved in a sexual relationship must both be consenting adults. Consent is always seen as informed consent. Some people may need support to deal with unwelcome sexual behaviors and support to report if necessary.

The organization should understand what sexuality means for the person. What opportunities exist for this expression? What supports are needed? (education, counseling, privacy.) The person should receive sexuality education that will help them understand and be prepared for the risks, and possible results of sexual behavior. Staff should listen and watch carefully for issues that people may express and help them get  the  appropriate help as needed. Staff should also not be judgmental and try to impose their own personal values on people. It is important that staff respect the privacy of people they support to discuss and express their sexuality. Most agencies have specific policies and procedures for addressing sexuality that you should ensure are followed while protecting the person's rights and safety.

A high percentage of people with intellectual disabilities experience sexual abuse in their lifetime. A main factor contributing to the high prevalence is sexual abuse is the lack of sexuality education provided to them.

While not all individuals choose to be sexually active, all individuals are sexual beings. Expressions of sexuality include, but are not limited to, socialization, activities of friendship, boundaries in relationships, body awareness, human connectedness, genital interactions, assertiveness, self-image, self-care, decision making, and personal code of ethics.

Why is age appropriate, meaningful sexuality education important for children, youth and adults with intellectual disabilities?

  • Sexuality education should include not only facts about sex and biology but must also teach people to manage and enjoy relationships, make responsible choices and distinguish right from wrong.
  • Sexuality education helps people with an intellectual disability recognize if someone is trying to take advantage of them, so they can recognize inappropriate sexual advances early on, better protect themselves from exploitation and/or be able to report incidents of suspected sexual abuse.
  • Education also helps people with disabilities avoid making social mistakes that might make them look foolish or might be mistaken for criminal activity.
  • Information about sexuality also increases a person's awareness of the possible consequences of sexual activity, such as the risk of pregnancy or of acquiring a sexually transmitted disease.
  • Sexuality education teaches people how to protect themselves from some of the unintended outcomes of sexual activity.

All individuals receiving services in state operated  facilities, Community Integrated Living Arrangement (CILAs), Intermediate Care Facilities must have access to sex education, resources and treatment planning that supports the right to sexual health and healthy sexual practices. Individuals have the right to be free from sexual exploitation and abuse. Agencies are required to conduct individualized assessments to determine the individuals capacity to consent to sexual activity and provide developmentally appropriate sex education materials/resources. To determine consent capacity and developmentally appropriate materials, consideration must be given to all medical, psychological and psycho-social evaluations. The determination must be made by a treatment team that includes the individual, professionals who have knowledge of the individual and the guardian (if one is appointed). The guardian decision-making is to be made in accordance with the court order of appointment and the standards of decision-making established in the Illinois Probate Act.

Sex Education materials and instruction must be developmentally appropriate and present sexual identify as part of mature adulthood. Programs should be based on evidence-based programs. There should be substantial emphasis on the prevention of pregnancy's, sexually transmitted infections and diseases, and stress abstinence is the ensured method of avoiding unintended pregnancy and sexually transmitted infections and diseases, including HIV/AIDS. Materials should include discussions about the possible emotional and psychological consequences of sexual intercourse and the consequences of unwanted pregnancy. Course material should provide information on the use or effectiveness of condoms in preventing pregnancy, HIV/AIDS and other sexually transmitted infections and diseases. Programs should teach individuals to avoid behavior that could be interpreted as unwanted sexual advances and how to reject unwanted sexual advances. The program should also include possible dangers that potential predators present.

People First Language

People first language is using language that puts the person first and the disability last. Using people first language is important so that we portray a positive message about people with disabilities.

Who should use People First Language? Everyone!!!

  • Staff
  • Media
  • Family members
  • People with disabilities

Following is a set of guidelines, adapted from guidelines prepared by the Research and Training Center on Independent Living at the University of Kansas. The guidelines explain preferred terminology and offer suggestions for appropriate ways to describe people with disabilities. They reflect input from over 100 national disability organizations and have been reviewed and endorsed by media and disability experts.

  • Do not focus on a disability unless it is crucial to a situation. Avoid tear-jerking human interest stories about incurable diseases, congenital impairments, or severe injury. Focus instead on issues that affect the quality of life for those same individuals, such as accessible transportation, housing, affordable health care, employment opportunities, and discrimination.
  • Do not portray successful people with disabilities as superhuman. Even though the public may admire super achievers, portraying people with disabilities as superstars raises false expectations that all people with disabilities should achieve at this level.
  • Do not sensationalize a disability by saying afflicted with, crippled with, suffers from, victim of, and so on. Instead say person who has multiple sclerosis or man who had polio.
  • Do not use generic labels for disability groups, such as "the retarded," "the deaf." Emphasize people, not labels. Say people with intellectual disabilities, people who are deaf.
  • Put people first, not their disability. Say woman with arthritis, children who have a hearing impairment, people with disabilities. This puts the focus on the individuals, not the functional limitation. Crippled, deformed, suffers from, victim of, the retarded, infirm, etc. are never acceptable under any circumstances.
  • Emphasize abilities, not limitations. For example, uses a wheelchair/braces, walks with crutches, rather than confined to a wheelchair, wheelchair-bound or is crippled. Similarly, do not use emotional descriptors such as unfortunate, pitiful, and so forth. Disability groups strongly object to using euphemisms to describe disabilities. Some blind advocates dislike partially sighted because it implies avoiding acceptance of blindness. Terms such as handicapped, mentally different, physically inconvenienced, and physically challenged are considered condescending. They reinforce the idea that disabilities cannot be dealt with upfront.
  • Do not imply disease when discussing disabilities that result from a prior disease episode. People who had polio and experience aftereffects years later have a post-polio  disability. They are not currently experiencing the disease. Do not imply disease with people whose disability has resulted from anatomical or physiological damage (e.g., person with Spina Bifida or cerebral palsy). Reference to disease associated with a disability is acceptable only with chronic diseases, such as arthritis, Parkinson's disease, or multiple sclerosis. People with disabilities should never be referred to as patients or cases unless their relationship with their doctor is under discussion.
  • Promote that people with intellectual disabilities are active participants of society. We know that persons with disabilities interacting with non-disabled people in social and work environments helps break down barriers and open lines of communications.

Individual Council

One way of protecting individual rights is through the Individual Council. Individual Council members listen to what individuals must say, and they work towards handling/correcting issues that the council has identified as needing changed. They can empower people by giving them a voice.

Ways to strengthen our Individual Council...

  • Where possible, implement their requests or make their requested changes.
  • Write about them in your newsletter.
  • Have a member of your resident council on your board of directors.
  • Print business cards.


Self-advocacy is the civil rights movement of individuals and organizations to empower people with intellectual and other disabilities to speak for themselves, make their own decisions and stand up for their rights.

Basic beliefs and goals of self-advocacy include:

  • People with disabilities should be treated as equals.
  • People should be given the same decisions, choices, rights, responsibilities, and chances to speak up and empower themselves.
  • People should be able to make new friendships and renew old friendships just like everyone else
  • People should be able to learn from their mistakes like everyone else.

What is a right restriction?

Restriction means anything that limits or prevents an individual from freely exercising his/her rights and privileges. Something is usually considered restrictive if it impedes the enjoyment of general liberties that are available to all citizens.

Any procedure used to restrict personal rights is considered very serious because rights are so fundamentally important to our sense of individuality. Even if imposed for the protection of the person or others in the environment, these limitations should only be used after exhausting nonrestrictive and positive supports before restricting anyone's rights. Every available option should be considered before choosing one that restricts a person's rights in any way.

It should be assured that any program causing a restriction of rights has the following components in mind:

  • The restriction is temporary
  • The restriction is defined with specific criteria (under exactly what circumstances will it be used)
  • The program includes what was done prior to try to avoid the restriction
  • The program is paired with learning/training components to assist the person in the eventual removal of the restriction
  • The restriction is removed upon reaching clearly defined objectives
  • Reviewed regularly by HRC

Even if the restriction is imposed for the protection of the person or others, limitations should only be used after honest efforts at using a non-restrictive and supportive approach have been tried. Emergency situations can require that we act immediately to protect and address the rights restriction as soon as possible.

All efforts should be made to support the person in ways that maintain their self-esteem, and to avoid the kinds of restrictions which we might use with children. It is often important to look at organizational rules and routines which cause the person problems.

Human Rights Committee (HRC)

Each agency/facility is required to have an HRC. The Human Rights Committee (HRC) reviews policies, programs and practices, and advises organizational staff and management about the protection of rights. The HRC members are responsible for protecting the rights of the individuals whom the agency/facility supports. The HRC may include a group of individuals from a diverse subset of backgrounds and a broad range of experiences-- both from within and outside of the agency/facility. They should not be the same people who are on the Behavior Management Committee (BMC).

Behavior Management Committee (BMC)

The BMC serves important functions within your agency. A BMC is composed of individuals with technical expertise, usually in the behavioral sciences, who can evaluate the merits of proposed programs. Others who serve on this committee are the staff who know the individual the best and may include self-advocates, professional staff, and board members. The committee has responsibility for reviewing behavior plans. These plans must then be reviewed by the HRC to ensure that the behavior management plan does not unduly restrict an individual's rights. Plans that do not receive approval from the BMC should not go to the HRC.


A guardian is a person, institution or agency appointed by the Probate Court to manage the affairs of another, called the ward. The law presumes that an adult eighteen years of age or older can handle his/her own affairs. A guardian may be appointed to serve as a substitute decision maker if a person is disabled because of mental deterioration,  physical incapacity, mental illness, or intellectual disability.

The disability must prevent the person from making or communicating responsible decisions about his/her personal affairs. A guardian may also be appointed if, because of "gambling, idleness, debauchery, or excessive use of intoxicants or drugs", a person spends or wastes his/her estate to expose himself/herself or his/her family to want or suffering. In either case, guardianship may be necessary to protect the person and to promote the interests of others, such as service providers or creditors.

Guardianship is the legal process that transfers certain decision-making powers to the court appointed guardian. It is a process intended to:

  • Provide a legally authorized decision maker when a person is deemed unable to make his or her own informed decision.
  • Protect a person from potential harm when they have limited ability to make informed decisions.

Parents are considered the "natural guardians' of their children under the age of majority but not of their adult children.

  • When a person with an intellectual disability turns 18, a family member is not automatically appointed as their legal guardian.
  • In all cases, the court will decide as to the need for guardianship and if necessary, who should serve as guardian. Guardianship is needed when a person is unable to make and communicate responsible decisions regarding his or her personal care or finances due to a mental, physical or developmental disability.
  • The fact that a person is elderly, mentally ill, developmentally disabled, or physically disabled does not necessarily indicate the need for guardianship. Guardianship and other procedures used to restrict personal rights are considered very serious actions because rights are so fundamentally important to the sense of individuality. A mental, physical or intellectual disability and nothing more is not enough cause for the appointment of a guardian.

Appointment of a Guardian:

A family member may petition the court to be named guardian, or the person may express a preference as to his/her guardian. If the person expresses a preference, the judge will consider the person with a disability. However, the judge appoints whoever will make the best guardian and act in the best interest of the person with a disability, regardless of the party's relation to the person. Copies of guardianship papers must be in the person's file.

The extent to which a guardian can make decisions for an individual is determined by the court based on a thorough clinical evaluation and report.

Power of Attorney (POA)

There is a difference between a Guardian and a Power of Attorney (POA).

A Power of Attorney is a document which gives someone else authority to make medical decisions or financial decisions for another person. There are two categories of Powers of Attorney. They are:

  • Powers of Attorney for Health Care: The State of Illinois recognizes the right of adults to control all aspects of his or her personal care and medical treatment, including the right to decline medical treatment or to direct that it be withdrawn, even if death ensues. In the event the person becomes incapacitated, the person's attending physician must certify in writing that they lack the capacity to make their own health care decisions. Once appointed, the POA can make a broad range of medical treatment decisions for the person. The agent can consent; refuse to consent or withdraw medical treatment, including the refusal to activate life support systems or the termination of existing life support systems. The agent may not consent to voluntary inpatient mental health services; convulsive treatment; psycho-surgery; abortion; or neglect through omission of care primarily intended to provide for the comfort of the principal.
  • Powers of Attorney for Property (Durable Powers of Attorney): The State of Illinois recognizes the right of adults to appoint an agent, through a Durable Power of Attorney, to act on their behalf in financial and property matters. The Durable Power of Attorney must be executed by the principal or their guardian and must designate the agent and the agent's powers.

Person Centered Planning and Rights

An individual Personal plan outlines a person's dreams, goals and objectives. It also tells how these dreams, goals and objectives will be monitored. The Personal Plans are used as a guidepost to help an individual achieve what a person wants in his or her life.

Providers must not prepare or deliver any service for any individual without a personal plan that is tailored specifically to the needs and expressed preferences of the individual receiving services and, in the case of a minor, the minor and the minor's parent or guardian. Services provided in response to emergencies or crisis shall be part of the plan and thereafter documented in the individual's personal plan. Everyone has a right to services that they receive. These services should:

  • Respond to the needs and preferences of the individual
  • include the completion of the Discovery Tool, Personal Plan and Implementation Strategy
  • Be person-centered.

"Person centered" means focusing on the needs and preferences of the individual, empowering and supporting the individual in defining the direction for his life, and promoting self-determination and community involvement.

Final Thoughts:

Anyone who leads a life of dignity and meaning takes risks. Each of us, in the pursuit of jobs, our personal and romantic relationships, our leisure activities, and our adventure has stepped into the unknown and risked failure, rejections, and even our physical well-being. Anything any of us have ever accomplished has come from some level of risk-taking. The benefits of succeeding in these situations, or learning from our mistakes, are a crucial element in our development as independent people.

People who work and live with individuals with disabilities often try, usually with the best of intentions, to eliminate all of the risks and prevent any opportunities for failure in these individuals' lives. Some will even go to great lengths to prevent even minor failure. Allowing individuals to take risks and step into the unknown is part and parcel with treating them with dignity. This is not equivalent to encouraging recklessness; allowing risk does not mean being unsafe or setting people up to fail. Rather, by supporting individuals in prudent risk-taking and utilizing the wealth of teaching opportunities it unearths, we can bring meaning into peoples' lives. Providing them with the opportunity to try new things, test their limits, and discover capabilities they never knew they had will help them to achieve goals that enrich their lives.

Imagine for a moment what it would be like if you were never allowed to take risk. Imagine someone else making all of your decisions for you, having the last word on what your life's experiences would be.