Human Rights Committee Chairperson Training Curriculum

Role of Human Rights Committee
Chairperson Duties
Membership Education
Freedoms of Everyday Life
Perspectives on the Historical Treatment of People with Disabilities
1. Societal Perspective and Treatment
2. Notable Legislation or Advocacy
Wyatt v. Stickney
Laws, Administrative Rules and Regulations
HRC Membership
Some Common HRC Models
1. Stand Alone
2. Consortium
3. Combined Human Rights and Behavior Intervention Committees
What is a Rights Restriction?
Least Restrictive Alternatives
Typical Behavior Intervention Committee (BIC)/Human Rights Committee (HRC) Flow Chart
Helpful Information
HRC Endorsement Options
Resolving Issues that Emerge Between Meetings
Agendas, Sign-In Sheets and Meeting Minutes
Recruiting Strategies
Informed Consent and Confidentiality
Due Process
Guardianship
Human Rights Policies and Procedures
Language - It's not just 'semantics'
Some Philosophical Considerations
1. Personal Growth vs. Freedom from Harm
2. Risk
Appendix A
Scenarios for Discussion
Appendix B
Resource

"Disability is a natural part of the human experience, and in no way diminishes the rights of individuals to live independently, enjoy self-determination, make choices, contribute to society, pursue meaningful careers, and enjoy full inclusion and integration in the economic, political, social, cultural and educational mainstream of American society." Federal Legislation and the Rehabilitation Act Amendments of 1992

Role of Human Rights Committee

The general responsibility of the Human Rights Committee is to assist the provider in affirming and promoting the human rights of the individuals the provider serves. This includes monitoring and reviewing the means used by the agency to promote the rights of individuals served.

Specifically, HRC should review all rights restrictions. A behavioral program is systematic intervention meant to improve well-being or safety. This could be a medical intervention like a psychotropic drug, a safety device like bed rails or a more significant restriction like supervised access to hygiene products. Not all behavior programs require a behavior support plan. Rights restrictions will be discussed and defined later in the training.

The Human Rights Committee has a Chairperson that is selected and empowered by the executive director and/or the Board of Directors to ensure the committee acts independently and in the best interest of the individuals in order to ensure human and civil rights are protected. The Human Rights Chair is responsible for ensuring the committee is monitoring and reviewing the activities of the provider to assure that the rights of individuals are protected and promoted in accordance with the laws, rules and statues that govern them.

Other responsibilities of the HRC include:

Being committed to questioning every situation in which a person's rights are restricted for any reason
- For examples, please see scenarios for discussion
Presume competency
The Human Rights Committee must review the consents and other ways the provider informs the individual, staff, guardian and family members about the rights of people receiving services
Advocate and monitor the way individuals are supported to exercise their rights, including:
- Being proactive to ensure individuals have full access to their rights as citizens (as opposed to their rights as clients)
E.g. ensuring that all individuals have access to voting rights
The Human Rights Committee must review any provider policies and procedures that involve individuals' rights
Reviewing policies and procedures annually to assure compliance with Department regulations pertaining to individuals' rights
Reviews and monitors the authorization of emergency rights restrictions
Should never be a 'rubber stamp committee' that approves anything and everything that comes before it. See Appendix B for suggestions on how to avoid "rubber stamping".
Assures that providers have policies and procedures in place to support the individuals if they need legal counsel or advocacy
- For example, if an individual is being evicted, accused of a crime, or needs assistance with guardianship issues
Monitors and reviews the authorization and use of behavior programs approved by the Behavior Management Committee
Makes recommendations on ways to improve the degree to which human and civil rights are promoted
The Human Rights Committee can have additional functions as providers see fit.

However, the function of the Human Rights Committee is largely dependent on the role it serves within the agency. The policies of the agency will determine the exact role of the HRC.

Chairperson Duties

The role of the chairperson is to coordinate all the activities of the committee, synthesize information, achieve consensus and make recommendations to the executive director. Aside from these duties, the chairperzon may be responsible for a variety of other duties. These duties may include such things as membership education, recruiting new members, assuring that confidentiality is upheld, assuring due process and promoting individual rights.

Some additional HRC Chairperson Duties may include:

Develop an agenda and sign-in sheet for HRC Committee.
Introduce members of the committee and presenters at the HRC meeting
Establish rapport with members on the committee
Ensure the minutes are taken accurately and recorded
Ensure minutes are retained appropriately
Lead and facilitate the HRC meeting
Ask probing questions to ascertain information
Assist QIDPs presenting information, as needed
Arbitrate issues at the meeting
Ensure follow-up on any HRC issues
Communicate with Behavior Intervention Committee as needed
Communicate with program managers, as needed
Reinforce the purpose of the HRC meeting
Reinforce confidentiality with committee members
Provide educational resources/technical assistance when needed
Monitor and facilitate group decisions and recommendations
Listen to people supported who have concerns or complaints about their experience with restrictions
Handle issues in the interim including responding to emergency situations
The ability to commit to the term length of HRC Chair (2 years is typical)

Membership Education

Because rules require that a certain percentage of members of the committee must be unassociated, we must realize that some of our members may not be familiar with many subjects associated with developmental disabilities. Therefore, as chairperson, it is your responsibility to provide information to the committee. This can be done in various ways, such as having a guest speaker, providing written information that can be disseminated and discussed at the next meeting, videos, field trips, etc.

Some topics for member education may include:

Introduction to Intellectual/Developmental Disabilities
Historic perspectives of people with disabilities
Rights
Agency policy
Abuse/neglect
U.S. Constitution
Guardianship
Behavior Modification
Informed Consent
Advocacy
Positive Behavior Supports
Acronyms

Committee members should be provided with adequate training and discussion time for members on relevant issues on personal freedom and privacy such as:

private phone calls
private email accounts
smoking
engaging in sexual behaviors

Additionally, interacting and building relationships with people with disabilities will provide committee members the opportunity to learn directly from people with disabilities.

Freedoms of Everyday Life

The Human Rights Committee assures that Constitutional rights are upheld. 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

The Human Rights Committee also advocates and protects rights entitled to individuals who are receiving the Illinois Developmental Disability Medicaid Waiver. These rights include:

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
Freedom 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 services in the least restrictive environment
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
Individuals or guardians shall be permitted to purchase and use services of private physicians and other mental health and developmental disabilities professionals of their choice, which shall be documents in the person-centered plan.

Perspectives on the Historical Treatment of People with Disabilities

Historical perspectives regarding people with intellectual and developmental disabilities show that ignorance, neglect, superstition and fear ruled people's perceptions. People with disabilities were referred to as being "inferior" and "less than human" and the care that was provided reflected these beliefs. Common language used in the past reflected our perceptions: "fools" "idiots" and "imbeciles" were common terms used. Families of people with disabilities would hear over and over again from specialists in the field "Your child is defective, put him/her away and forget them." People with disabilities were looked upon as "broken" and needing to be "fixed". These false perceptions led to development of social policy which reflected these beliefs. This fostered use of ineffective "treatments", the effects of which still persist today.

From the late 1860s until the 1970s, several American cities had laws making it illegal for persons with "unsightly or disfiguring" disabilities to appear in public. These were called "ugly laws." One such law was the Chicago Municipal Code, Section #36034 which included an ordinance that stipulated: "No person who is diseased, maimed, mutilated or in any way deformed so as to be unsightly, disgusting or improper is to be allowed in or on the public ways or other public places in this city, or shall therein or thereon expose himself to public view, under penalty of not less than one dollar nor more than fifty dollars for each offense." Many states' and cities' Ugly Laws were not repealed until the 1970s, and Chicago was the last to repeal its Ugly Law in 1974.

Examination of these historical perspectives is important because sometimes we need to know where we have been to figure out where we are now, and what the future may hold.

In 1990, the Americans with Disabilities Act became law, and it provided comprehensive civil rights protection for people with disabilities. Closely modeled after the Civil Rights Act, the law was the most sweeping disability rights legislation in American history. It mandated that local, state, and federal governments and programs be accessible, that employers with more than 15 employees make "reasonable accommodations" for workers with disabilities and not discriminate against otherwise qualified workers with disabilities, and that public accommodations such as restaurants and stores not discriminate against people with disabilities and that they make "reasonable modifications" to ensure access for members of the public with disabilities. The act also mandated access in public transportation, communication, and in other areas of public life.

For more information on historical treatment of people with disabilities please go to: Museum of Disability

Societal Perspective and Treatment

1200-1700: Accepted belief that mentally ill people (lunacy and idiocy) were

possessed by the devil or evil spirits. As a result, they were routinely whipped, tortured and burned at the stake. Between 1400 and 1700 more than 100,000 women executed as witches. Many of these women had some form of mental illness or other age-related disability. Many individuals were tortured, burned at stake, and left to die.

1800: Science begins to replace religion as the main authority guiding leaders in the West. Biology and science are used to explain the world. Instead of being seen as having a spiritual deficit, people with disabilities are seen as having a genetic deficit. People with disabilities placed under the care of medical professionals, professional educators and social workers. Almshouses, workhouses, institutions proliferate in the U.S.

1800-1920s: The beginning of the Eugenics Movement started in 1850. The goal was to improve the quality of the human gene pool. People with disabilities were segregated and hidden (institutions, asylums, hospitals, segregated schools, sheltered workshops, attics) or placed on display as entertainment (freak shows, circuses). They were thought to be genetically defective and polluting the race. Many individuals were hidden away.

1930-1940s: Genetically defective and polluting the race. Many individuals starting being sent to institutions, sterilized, and exterminated. President Franklin Delano Roosevelt's physical disability was hidden from the American public for fear that it would detract from his power and status.

1940-1970: Unfortunate, object of charity, and pity. Individuals were still being institutionalized with the hopes of being rehabilitated.

1970-2000s: Independent and self-determined. Society is recognizing that individuals should be independent, autonomous, and lead self-directed lives.

Notable Legislation or Advocacy

1907: Indiana became the first of 29 states to pass compulsory sterilization laws directed at people with genetic illnesses or conditions.

1924: The Commonwealth of Virginia passed a state law that allowed for sterilization (without consent) of individuals found to be "feeble-minded, insane, depressed, mentally handicapped, epileptic and other." Alcoholics, criminals and drug addicts were also sterilized.

1935: The League of the Physically Handicapped is formed in New York City to protest discrimination against people with disabilities by federal relief program. The group organized sit-ins, picket lines and demonstrations and traveled to Washington D.C. to protest and meet with officials of the Roosevelt administration.

1945: President Harry Truman signed a proclamation creating National Employ the Handicapped Week.

1950: Laws still on the books in some states prohibiting persons "diseased, maimed, mutilated, or in any way deformed so as to be an unsightly or disgusting object" from appearing in public.

1961: President Kennedy appoints a special President's Panel on Mental Retardation, to investigate the status of people with mental retardation and develop programs and reforms for improvement.

1970: Independent Living movement begins, grass roots effort by disabled people to acquire new rights and control over their lives.

1972: The U.S. District Court of Alabama decided in Wyatt vs. Stickney that people in residential state schools have a constitutional right "to receive such individual treatment as (would) give them a realistic opportunity to improve his/her mental condition."

1975: All Handicapped Children Act codifies 1972 special education proposals that require students with a disability to have an individual plan.

1986: Education of the Handicapped Act Amendments (PL 99-457) Earmarks funding for states to collaborate with families to develop plans and programs from birth forward.

1990: Individuals with Disabilities Education Act (IDEA) - IDEA was a reauthorization by the US Congress of the Education for All Handicapped Children Act (EHA - 1975-1990). IDEA's purpose is to ensure students with disabilities receive the same opportunities for education as students without disabilities, receiving free public education individualized to their needs.

1992: Americans with Disabilities Act of 1992 is an extension of the 1994 Civil Rights Act that extends civil rights to those individuals with disabilities.

1999: Olmstead Vs. LC - Supreme Court decision - "unjustified segregation of persons with disabilities constitutes discrimination in violation of Title II of the Americans with Disabilities Act." The Court held that public entities must provide community based services to persons with disabilities who want them, for whom community based services are appropriate, and who can be reasonably accommodated, taking into account available resources and the needs of others the entities serve.

2002: No Child Left Behind (NCLB), producing measurable gains and outcomes to increase achievement. This was the educational centerpiece of the George W. Bush presidency

2009: Common Core State Standards are to be designed so that they will challenge and help students with disabilities in the same manner they are intended in the general education setting.

2011(Illinois specific): Ligas Consent Decree: The Ligas vs. Hamos lawsuit, was settled on behalf of individuals with developmental disabilities residing in Intermediate Care Facilities for Persons with Developmental Disabilities or ICF/DDs who wanted to move to community-based services or settings.

2013 (Illinois specific): Employment First Act (20 ILCS 40): Competitive and integrated employment shall be considered the first option when serving persons with disabilities of working age.

2014: Home and Community Based Services (HCBS) Settings Rule: Released by the Centers for Medicare & Medicaid Services (CMS) - will ensure that Medicaid-funded HCBS programs provide people with disabilities opportunities to live, work, and receive services in integrated community settings where they can fully engage in community life.

Wyatt v. Stickney

One of the most significant legal cases affecting rights of people with developmental disabilities is Wyatt v. Stickney. Wyatt v. Stickney, filed in the federal United States District Court for the Middle District of Alabama on October 23, 1970, was a landmark ruling that established baseline care and treatment requirements for the institutionalized "mentally disabled." The suit was filed on behalf of the patients at Bryce Hospital in Tuscaloosa, with 16-year-old Ricky Wyatt as the main plaintiff. Wyatt had been incarcerated for "delinquency" but had never received any other diagnosis of mental disability or condition. The defendants in the case were the Alabama Department of Mental Health (DMH) and its commissioner, Stonewall Stickney. The suit initially was prompted by layoffs at Bryce Hospital, with attorneys alleging that insufficient staff at the hospital would prevent involuntarily committed mentally ill patients from receiving adequate treatment, a violation of their civil rights under the Fourteenth Amendment of the U.S. Constitution.

As a result of this ruling, minimum standards were created for care of people with intellectual disabilities who reside in institutional care.

These minimum standards or 49 principles of care included:

"Right to treatment"
Establishment of the Qualified Intellectual Disabilities Professional (QIDP) previously known as the Qualified Mental Retardation Professional (QMRP)
Staff to client ratios
Physical plant features/dimensions
Development of Behavior Plans
Establishment of Human Rights Committees

Laws, Administrative Rules and Regulations

Rules have been established to protect the rights of individuals receiving Developmental Disability Medicaid Waiver services. The Human Rights Chairperson is responsible for ensuring all laws, administrative rules and regulations that are listed below are followed. Some of these rules are outline in Rule, the Waiver Manual and statue and include

Each agency is required to establish a chairperson for the Human Rights Committee to ensure compliance with all listed rules, regulations and laws.
Notice of Rights to Appeal (IL462-1202) is provided at the initiation of services, upon request, annually, and with changes or discontinuation of services as applicable.
Each agency/HRC Chairperson is required to establish or ensure a process for the periodic review of human rights issues involved in the individual's services and supports. Agencies required to have behavior intervention and human rights review policies and procedures under licensure or certification standards shall continue to comply with those standards.
Each agency is required to establish or ensure a process for the review of restrictive behavior interventions, at minimum every 6 months or more frequently according to individual plans, involved in the individual's services and supports.
The Human Rights Chairperson is responsible for holding the committee and providers accountable for promoting appropriate alternative skills/behaviors to replace target behaviors and use behavior intervention procedures that do not involve unnecessarily restricting the rights of individuals.
- The BMC is responsible for providing evidence of other positive supports being utilized prior to using restrictive approaches. This can be done through minutes kept at meetings. More restrictive measures can be implemented prior to utilizing positive supports if the health, safety and well-being of the individual or others is at risk. All interventions implemented must be within the guidelines of the agency's policies and trainings.
- The BMC Chairperson should ideally be a different person than the HRC Chairperson to ensure both disciplines are monitored appropriately. Any exceptions to this requirement can be made as long as it is clearly defined in provider policy.
The chairperson shall review program policies, procedures and practices which restrict an individual's rights, whether general or specific to behavior
management in all programs written within the agency (CILA, CDS, ICF, etc.) with all committee members.
The HRC must review all rights complaints, all restrictive interventions including those used in emergency situations, all use of psychotropic medication, any medications used to manage behaviors, any restrictive interventions used to manage behaviors or to treat a diagnosed mental illness. The review must occur at least annually for all individuals regardless of service/supports being provided.
The HRC Chairperson can approve emergency rights restriction based on emergent situations. The Chairperson is responsible for notifying committee members the following business day to seek approval, or to remove the restriction until a full meeting can be scheduled.
The HRC shall maintain minutes, including attendance, discussion surrounding restrictions and decisions made.

The HRC Committee must meet at least quarterly and more often if needed

HRC Membership

HRC Membership should include . . .

at least 5 members
at least 1 person receiving services from the agency and/or his or her family member or guardian
at least 1/3 of the members otherwise unassociated with the agency
no more than 1/2 of members employed by the agency

To be considered "unassociated" with the agency, a member must not be a former employee, person receiving services or guardian of person formerly served by the agency. Vendors providing products or services are considered associated members. Staff from other providers or programs are considered associated members.

HRC Chairperson is responsible for ensuring appropriate membership for the committee.

HRC is most effective when comprised of members who will advocate for persons served and who will weigh the relative merits of restrictions versus the risk or potential gain and assess validity of procedures.

Some Common HRC Models

Stand Alone

These committees are based on the agency's own resources. They work well in supporting the 'culture' of the agency; however, it may be difficult to recruit an adequate number of outside members.

Consortium

Due to size and more rural location, a smaller agency may find the consortium most beneficial. Since the HRC would be shared by two or more agencies, the problem of recruitment of outside members is lessened. The preservation of confidentiality needs special consideration here.

Combined Human Rights and Behavior Intervention Committees

This model is generally discouraged because each committee should serve different functions. The Behavior Intervention Committee is there to examine the technical aspects of behavior programs. With the combined method, each of the important tasks of these committees may become slighted.

What is a Rights 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. Rights restrictions include (but are not limited to) such things as:

Limitations on access

To personal possessions (mail, clothing, money, etc.)
To food or drink
To activities
To family, friends, children
Intimate relationships
To privacy
To financial authority

Limitations to movement

Mitts
Therapeutic holds
Helmets, gait belts, splints or other safety devices
Mechanical restraints
Door/window alarms and other environmental restrictions
One-to-One supervision, enhanced supervision
Self-directed mobility within their home and community

Other typical issues reviewed by the HRC may be…

Guardianship issues
Psychotropic medications
Incident report review
Reviews recommendations made by regulatory bodies pertaining to individual's rights (e.g. findings from a BALC Survey, recommendations from a Bureau of Quality Management Survey, etc.)
Choice of services

The uses of psychotropic medications, physical restraint or denial of food or possessions are all easily recognized restrictions. But due to a variety of reasons, persons served may be subjected to a variety of less obvious restrictions. The HRC needs to be diligent in assessing services and supports to determine if restrictions or limitations are imposed.

Some other examples of Rights Restrictions include:

Staff enters an individual's room without permission.
Staff goes through the individual's purse, pockets, drawers, etc.
The individual does not or is not allowed to make own decisions.
The individual is not allowed or assisted to answer their phone or doorbell.
Junk mail is removed from the individual's mail before they see it.
The individual must ask permission to go anywhere in their own home (locked doors, refrigerator, cupboards).
All medical services are provided by one physician and the individual does not have a choice in determining their medical providers.

With any program that causes a restriction of rights, it is required that:

Nonrestrictive interventions were demonstrated as ineffective based on data collection
The restriction is temporary
The restriction is defined with specific criteria (under exactly what circumstances will it be used)
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 according to regulations

Psychotropic medications need to be reviewed every 6 months

Least Restrictive Alternatives

There are a number of interventions that a team can choose from when an individual's behavior is such that the team must intervene. When a restrictive procedure is presented to the HRC, the committee should ask certain questions to determine if the restriction is the least restrictive option. The committee must first ask "What right is being infringed upon?" More than one right can be restricted at the same time. For example, imposing a medically prescribed diet may result in several rights being restricted such as:

Limited access to food
Limited or no choice of food selections
Limited or no access to money that may be used to obtain food
Limited or no free community access

Before a restriction is proposed, there must be documentation that other less restrictive methods have been regularly applied by trained staff and failed.

Rights should not be restricted just because it's always been done that way. Teams are to determine the least restrictive level and type of support needed on an individual basis. There should be a rationale for the restriction and it should be clear that the restriction imposed meets the needs of the individual without being more intrusive than necessary.
House rules/staff convenience. Anyone living with others must abide by some rules and agreed upon routines. However, when a rule is imposed on a person against their will, it must be considered a restriction. Individuals should be involved in the development of rules and routines in order to live with other and exercise control over their own lives.
The team proposed it…Despite the best of intentions; a team may not have proposed the most appropriate plan. The HRC serves as a safety net to ensure that rights are unjustly or excessively restricted. The HRC needs to question and evaluate team decisions.

Important notes regarding restrictions

The individual's opinion about the restriction is important
Restrictions, when necessary, are not bad.
Restrictions must be individualized.
Don't think you can identify what is a restriction by compiling a list. Use the 'neighbor' test; if you cannot do it to your neighbor, it is probably restrictive.
What is restrictive for one individual may not be restrictive for another.
What is the least restrictive for one individual may be too intrusive for another.
The person's opinion about the restriction is important.
There is never just one solution to a rights issue.

Typical Behavior Intervention Committee (BIC)/Human Rights Committee (HRC) Flow Chart

Behavioral issues emerge that are identified as in need of social transition.
Qualified Intellectual Disabilities Professional (QIDP)/case manager schedules support team meeting. *
Support team discusses issues and recommends interventions.
The team, including the individual and/or guardian, develops a plan with leadership from the QIDP/case manager. *
The team presents the plan to BIC for review of technical merit. If approved, it moves to HRC or if not approved, the plan return to team for revisions.
The HRC reviews rights implications and either endorses the plan or returns it to the team or BIC.
The plan is sent for approval to the individual and guardian prior to program implementation.

*Opportunities for informal consultation by the HRC.

Helpful Information

In order for the committee to fully examine requests for any restriction of an individual's rights, it is helpful to have enough information presented. The chairperson is responsible for ensuring the appropriate information is available to the committee prior to review.

What type of information is helpful to have when discussing a submission?

Functional Assessment of the target behavior for which restrictive program was designed, including any history of trauma
Documentation that indicates the risks of the target behavior versus the risk of the proposed intervention
Past efforts to replace the target behavior
Documentation that the behavioral support plan is reviewed regularly by the person's support team
Clear definition of the targeted behavior or behaviors
Informed consent from the individual or the individual's legal representative
Behavior Intervention Committee approval

HRC Endorsement Options

The committee will need to approve any restriction before it can be implemented. Some endorsement options include:

Endorse for up to 12 months
Endorse contingent on specific modifications by Interdisciplinary/Community Support Team
Return for re-review by Behavior Intervention Committee, based on specific issues
Rejection or failure to endorse

Resolving Issues that Emerge Between Meetings

Meeting frequency will depend on how the flow of services works at the agency. Cases that are discussed at HRC will first need to be discussed at the Behavior Intervention Committee meeting and the timeline that is established between the two Committee meetings must be one that will work for the agency. The goal is to ensure that reviews take place in a timely manner. The chairperson is responsible for ensuring the timely transfer of plans from BIC and HRC. The chairperson is responsible for ensuring the plan is approved by the individual and the guardian.

However, sometimes issues need to be approved between scheduled meeting times. The procedure for approving restrictions between meetings will depend on your agency policy and procedure for approval. The Chairperson is responsible for ensuring approvals for any restrictions that require emergent review. After the emergency approval, the case is then discussed and noted in the minutes of the next scheduled HRC meeting.

Agendas, Sign-In Sheets and Meeting Minutes

Agendas are very helpful in guiding meetings and keeping them on track. The agenda may list who is presenting and at what time, topics that will be discussed and any highlights that will aid in keeping the meeting running efficiently.

The chairperson is responsible for ensuring that each member's name, signature, title and relationship to the organization is kept on file for regulatory bodies that may require this information.

The chairperson must maintain minutes of each meeting held. Local, state and federal regulatory bodies often request the minutes when conducting an agency review. Many times, the Chairperson arranges for someone to take notes at the meeting, since at times discussion can become intense. This will allow the Chairperson to pay full attention and can assist with the accuracy of the record. Each plan will have an individual sign off that is maintained with BIC approval, and plan official approval. All notes should ensure that any medication mentioned is spelled correctly and that dosages are indicated. The minutes must include who was in attendance and what decisions were made. Be sure to include information regarding any emergency reviews that have occurred since the last meeting, member education that has occurred since the last meeting, etc. The meeting minutes should then be circulated to the committee and appropriate leadership within the organization.

Recruiting Strategies

The chairperson is responsible for ensuring appropriate membership is maintained. Many times it is best to recruit more members than you will actually need because sometimes new recruits don't stand the test of time. The requirement to assure that 1/3 of members are unassociated with the agency may turn out to be more difficult than initially anticipated.

Some ways to recruit may include:

Public Presentations (i.e., Rotary Club, etc.)
Presentations at self-advocacy groups
Ads
Personal Referrals/Word of mouth
Exchange with another agency
Agency web site (Facebook)
Be present in the community

Informed Consent and Confidentiality

Confidentiality and anonymity are important to maintaining trust among members of HRC and trust among the individuals a provider serves. Confidentiality means that what is discussed during the HRC meeting is kept private among members. Confidentiality can be broken when proper authorities need to be informed of wrong-doing. This may include, but is not limited to, contacting the police or the Office of the Inspector General.

Anonymity means that the identifying factors of individuals, staff, families or community members are withheld so that their identity remains unknown.

The Chairperson is responsible for ensuring committee members review confidentiality policies annually. Measures should be taken to maintain confidentiality and, when necessary, anonymity. Details in conversations should only include relevant information to the rights restriction. With the enactment of the Health Insurance Portability and Accountability Act (HIPAA) HRCs must be diligent in assuring that their practices remain in accordance with federal and state HIPAA regulations. A central aspect of the Privacy Rule is the principle of "minimum necessary" use and disclosure. A covered entity must make reasonable efforts to use, disclose, and request only the minimum amount of protected health information needed to accomplish the intended purpose of the use, disclosure, or request.

HRC members should be mindful of their surroundings when discussing meeting topics. Personal health information (individual's names, addresses, diagnosis, birthdates, and other identifying information) should not be shared via email unless there are reasonable safeguards in place to protect privacy. Information discussed in HRC meetings should not be shared on social media.

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

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.

Guardianship

There are several types of guardianship available under Illinois Law. If guardianship is needed, consideration should be given to obtaining the least restrictive form, based on the individual's capabilities.

Guardianships can take following forms:

Limited Guardianship - used when the person with disabilities can make some, but not all, decisions regarding his/her person and/or estate. "Guardianship shall be ordered only to the extent necessitated by the individual's mental, physical and adaptive limitations." A limited guardian makes only those decisions about personal care and/or finances which the ward cannot make. The powers of a limited guardian must be specifically listed in the court order. The ward retains the power to make all other decisions regarding his/her person or estate. Limited guardianship may be used to appoint a limited guardian of the person, a limited guardian of the estate, or both.
Plenary Guardianship - used when the "individual's mental, physical and adaptive limitations" necessitate a guardian who has the power to make all important decisions regarding the individual's personal care and finances. Plenary guardianship may be used for the person, the estate, or both.
Guardianship of the Person - used when a person, "because of his disability, lacks sufficient understanding or capacity to make or communicate responsible decisions regarding the care of his person." The guardian of the person makes decisions regarding the "support, care, comfort, health, education . . . maintenance, and . . . professional services" (such as educational, vocational, habilitation, treatment and medical services) for the person under guardianship who is called a ward.
Guardianship of the Estate - used when the person "because of his disability...is unable to manage his estate or financial affairs." A guardian of the estate makes decisions about management of the ward's property and finances.
Temporary Guardianship - used in an emergency situation. Temporary guardianship can last no longer than 60 days and is a means to assure that the person who evidences need for guardianship receives immediate protection.
Successor Guardianship - used upon the death, disability, or resignation of the initially appointed guardian, when guardianship is still needed.
Testamentary Guardianship - used by parents of a person with disabilities and designates, by will, a person who assumes the guardianship appointment upon the death of a parent. The designated person must still be appointed by the court before he/she can serve as guardian. The court will consider the designated person but is not bound by the testamentary designation. It can appoint someone else if the proposed guardian is found to be inappropriate.
Short-Term Guardianship: the court appointed guardian can appoint an acting guardian for short periods of time. This appointment must be in writing but does not require court approval. A short-term guardian cannot serve more than a total of 60 cumulative days in any 12-month period. This can be effective when the court appointed guardian will be traveling or otherwise unavailable for a period of time.
9. Stand-by Guardian - Stand-by guardians are appointed by the court and are used to provide continuity in the event the primary guardian dies, becomes incapacitated or is no longer acting. An example of its use could be a guardian diagnosed with a terminal illness. This guardian may want to exercise his/her role for as long as possible, but at some point the stand-by guardian will be required to step in.

Sources: Guardianship information

Human Rights Policies and Procedures

The HRC is responsible for keeping agency policies and procedures regarding individual rights current. It is recommended that these be reviewed at least annually. Be sure that the agency is up-to-date with applicable rules and best practice. Agency policy can cover such areas as:

HRC Mission Statement
Purpose of the committee
Functions (what does the committee review?)
Definitions
Meetings (Frequency, procedure, quorum)
Membership composition
Membership education
Approval consensus
Participation documentation
Emergency approval procedure
Special duties of the committee (for example, the Executive Director may request the committee investigate incidents related to individual care)

All members should be trained about policies and procedures by the chairperson. Sometimes organizations have clear policies; however, many times the policies are not enacted because employees or supervisors do not understand them. No policies and procedures should ever be regarded as "complete" in the sense that they will never change. The best policy/procedure manual is the one that is geared to continuous growth over time and incorporates design features that make this kind of growth possible.

Language - It's not just 'semantics'

Language is powerful. When we misuse words, we reinforce the barriers created by negative and stereotypical attitudes. When we refer to people with disabilities by phrases and names they do not prefer, we devalue and disrespect them as members of the human race. We need to recognize the power of words and carefully choose language that can positively influence and potentially change societal perceptions of people with disabilities. As a member of the HRC, it is especially important that you use and promote respectful language when referring to or talking about the people that you help support.

For too long, labels have been used to define the value and potential of people who are labeled. Often, when people hear a person's diagnosis, they automatically make assumptions. Assumptions are made about the person's potential, what he or she can or can't do, whether he or she can learn, be employed, or live in the community.

We must believe all people with disabilities are real people with unlimited potential, just like people without disabilities. People will live up (or down) to expectations. If we expect people with disabilities to succeed, we cannot let labels stand in their way. A person's self-image is strongly tied to the words used to describe them. Some people use infantilizing language when speaking to or about people with disabilities. It is important to recognize this and correct it when you hear it.

Generally in choosing words when talking/writing about people with disabilities, the guiding principle is to use the language that the person prefers. Some people prefer person-first language. This is language that puts the person before the diagnosis. For example, Sara is a person with autism who likes to run. Identity-first language is when the disability/condition/diagnosis comes first. For example, Sara is an autistic person who likes to run.

Some General Guidelines for Talking about Disability are:

Don't use labels! When we put a label on a person, it purports to tell us what's inside. It is as if we are labeling a can of tomatoes. The label tells us what to expect when we open it.
Do not refer to a person's disability unless it is relevant to the conversation
Use "disability" rather than "handicap" to refer to a person's disability
Do not use negative or sensational descriptions of a person's disability. For example, don't say "suffers from", "a victim of," or "afflicted with."

Some Philosophical Considerations

Personal Growth vs. Freedom from Harm

People with disabilities should have the freedom to direct all aspects of their lives. People should have the freedom to make choices, freedom to fail and the chance to learn from experience. This is called the dignity of risk.

However, it is important to make a risk/benefit analysis and determine the cost of absolute safety versus the benefit of interaction with the environment. The HRC can be a forum for this type of analysis. Many times, agencies have imposed blanket restrictions in the name of safety; however, this type of thinking only fosters dependence. There are certainly situational concerns regarding the right to try and the right to fail; however, an agency cannot ignore its responsibility in supporting this "dignity of risk."

Risk

It is vital to remember that the adults we support are fully adults. When considering the idea of risk, we may want to ask questions such as "What supports would we put in place for ourselves or friends or family who want to do things they've never done before?"

Talk about those things
Research the best safety practices and decide if it makes sense for the current situation
Try something for a short period of time
Try something with someone who has more experience than we do
Evaluate the experience and make new decisions about going forward.

Sometimes things go wrong. If they do…

Examine what happened and think about what you've learned
Don't over-react
Don't write another policy that applies to everyone when something happens with one person

"Freedom is not worth having if it does not include the freedom to make mistakes."

Mahatma Gandhi

Appendix A

Sample Questions for each plan	Committee Comments
Who is the person and what significant things are going on that require the committee's attention?
What is the issue?
What are the relevant data and what do they indicate?
What is the proposed restriction?
Has informed consent been obtained? From whom?
What is the impact of the restriction in the person's life and lives of those around them?
What alternatives have been tried?
What were the results?
Why is this particular action being recommended?
What is the person's perspective of the restriction?
Who will implement the procedure? How will they be trained?
Has the program been approved by the Behavior Intervention Committee?
What are the criteria for reinstatement?
What are the teaching strategies for reaching criteria?
What are the review mechanisms? Dates?
What are the Human Rights Committee recommendations?

Adapted and modified from: Human Rights Committees book by Steve Baker and Amy Tabor, "Staying on Course with Services and Supports of People with Developmental Disabilities".

Scenarios for Discussion

1. Joe recently moved to your agency. He has developed a habit of urinating in inappropriate places and seems to prefer using his and his roommate's dresser drawers. Adequate clean clothing for both Joe and his roommate is constantly in short supply. Both sets of parents regularly complain about Joe's actions and it was recently brought to the attention of the agency's Executive Director. Staff removed the dresser and locked it in the laundry room. Each evening after the roommates go to bed, staff take out one outfit for each roommate and hang them in the closet. Staff report that the number of instances of inappropriate urination is nearly zero since the dresser was removed. It is proposed that the clothing remain inaccessible until such time that something better is figured out. Both guardians agree to the plan. Will you endorse this plan?

Potential Rights Restrictions

Related Issues to Explore:

2. Jim is a fairly strong young man. He also seems to have experienced a life history in which he seldom was required to do anything he didn't want to do. Staff in his home often describe him as "non-compliant." When demands are placed on him, he may become physically aggressive until the demands are eased. The doctor has prescribed Paxil for agitation, as well as to calm the physical aggression. The psychologist also recommends a behavior program in which his aggressiveness is ignored in hopes of extinguishing it. The Behavior Intervention Committee has approved this plan. Will you endorse this plan?

Potential Rights Restrictions

Related Issues to explore?

3. Lori is receiving both residential and day services at the agency where she lives. Every morning, Monday through Friday, a bus stops at her house to take her and two other individuals to a day program, which is not very far from their home. In recent months Lori has become steadily more reluctant to get on the bus, although, once aboard, she seems fine. In the past two weeks she has had what appear to be panic attacks at the sight of the bus. Male staff are now being scheduled to be at the home in the morning to physically carry her onto the bus. In order to lessen the risks involved in the current staff response, it is proposed that her breakfast be withheld and served to her on the bus. Lori seems to regard food as a very powerful reinforcer. Additionally, the doctor has recommended Zoloft for her anxiety. Will you endorse this plan?

Potential Rights Restrictions

Related Issues to Explore:

4. Marian recently moved to your agency. Ever since she arrived she has attempted to run outside on a number of occasions. Risk assessment shows that she does not demonstrate traffic safety skills and the residence is located in a busy area. The team has determined that a door alarm needs to be installed on all doors so that at the sound of the chimes, they could be sure Marian was safe.

Potential Rights Restrictions:

Related Issues to Explore

5. Recently one of the QIDPs came to you as an HRC committee member for some advice.

It seems that Marcus, one of the gentlemen that she helps to support, has decided that he wants to go to the barber and have his head shaved. He's seen men on TV with shaved heads and thinks that this is the look for him. The problem is that that Marcus' parents don't want him to do it. They are very involved with their son and he goes home to Chicago to visit them often. The QIDP is worried that Marcus may not be able to visit the family if he goes through with the hairstyle choice.

What type of advice would you give to the QIDP?

Related Issues to Explore:

6. Sarah is an individual at your agency who lives in Intermittent CILA. She is very outgoing and friendly. She has connected with a few staff members on social media. The staff members send and receive private messages with Sarah. Recently, Sarah posted pictures on her social media that show she had a party and had people spend the night. Some staff members feel that this is inappropriate, and they should put measures in place to limit her ability to have overnight guests stay at her apartment. Other staff feel that Sarah is not responsible enough to have a party and things could get out of control. The pictures show that there was alcohol at the party. A staff has suggested that they require her to notify staff prior to the next party and give a list of friends who are invited.

Potential Rights Restrictions:

Related Issues to Explore:

7. Latonya is a woman who receives 24-hour services and needs very few supports with her daily activities. She has her own room and has a part-time job in the community. Latonya has a key to her house and her room. She was provided with a key to her room and lost it the first day she took it to her job. She was given another key to her room and signs a contract stating that if she loses this key, she will have to pay for the new one. Staff decide that she should leave the new key at home so she won't lose it. Her QIDP decides that until she can keep track of the key to her room, she does not get a key to the CILA. The agency is also encouraging her to schedule her shifts around her staff's schedule so that she won't need a key to access her CILA.

Potential Rights Restrictions:

Related Issues to Explore:

Appendix B

These are questions to ask to avoid "rubber stamping" rights restrictions

Why is the restriction necessary?

What else has been tried?

What type of training and/or supports has been provided to the individual?

Have health and environmental causes been ruled out?

Are these the same limitations that people without disabilities would experience?

Resource

Baker, Steve and Tabor, Amy Human Rights Committees, Staying on Course with Services and Supports for People with Intellectual Disabilities, High Tide Press

Sources: Guardianship Information

"The Guidebook of Laws and Programs for People with Disabilities" Illinois Legal Aid

For more information about Wyatt v. Stickney, please go to: Wyatt vs. Stickney

For more information on historical treatment of people with disabilities please go to: Virtual Museum