How Much Do You Know About Individual Rights? Trivia Questions Quiz

Where Do Rights Come From?   Our rights in the U.S. come from 3 sources:  

• The U.S. Constitution

 

• Legislation (federal & state)

 

• Court Interpretations of the Constitution and of legislation

    Constitutional Rights Some come from the original Bill of Rights and some from Amendments to our Constitution.  

• Access to the courts & legal representation

 

• Free association

 

• Contract, own, & dispose of property

 

• Equal educational opportunity

   

• Equal employment opportunity

 

• Equal protection & due process

 

• Fair & equal treatment by public agencies

 

• Freedom from cruel & unusual punishment

 

• Freedom of religion

 

• Freedom of speech & expression

 

• Marry, procreate & raise children

 

• Vote

What rights do people with DD have?  Which don't they have?  Do people who have mental retardation have the right to marry? To have kids? To vote? The answer is that the U.S. Constitution guarantees these rights to every citizen, regardless of ability or disability.   The only way an adult person with DD gets any of these rights taken away from him/her is when the person is judged incompetent in a court of law. Only then is a guardian appointed who takes on some or all of these rights for the person. Parents must go to court to become guardians once their child reaches his/her 18^th birthday.    Not every individual in our programs necessarily has a guardian.  Also, nowadays some guardians are quite limited in the types of decisions they are allowed to make on behalf of their wards.   I guarantee you'll end up knowing at least 1 person with a developmental disability you think should not, for example, ever have children.  But I'll bet you'll also know someone with no disability you feel the same way about.  You have no right to prevent either one of them from exercising their rights. Can we end up with more rights than what is in the Constitution?  Yes.  While the federal government or an individual state cannot take away any Constitutional rights, it can establish more rights through legislation and the court system.  For example, we all recognize the right to privacy, but it is not specifically mentioned in the Constitution.   Likewise, an agency such as ours cannot take away any federal or state-given rights, but can recognize additional rights. We will talk about rights in Wisconsin in detail.  

It used to be that parents had two choices for their children who had developmental disabilities: keep them at home or place them in institutions.  Often, the well-meaning family doctor would recommend institutionalization as the better choice.   Community-based options for either residential or daytime programs did not exist until the 50s. In that decade, parents in a grass-roots movement invented "sheltered workshops" so that their adult children with DD living at home had a safe place to be when the parents were at work during the day.  Other community-based options progressed from there. So from their beginnings until fairly recently, institutions were basically it.  The problem is, they functioned primarily as warehouses where people were kept hidden away from the rest of society and as cheaply as possible.  This had a lot to do with public thinking that a person with DD was defective, even subhuman so that issues of human rights did not apply.   Typically, staffing was minimal to keep costs down.  Restraining devices were routinely used. With the invention of the major tranquilizers in the 50s, drugs often were used to keep wards quiet, what we now know as "chemical restraint." Some institutions had working farms where people never got paid for their labor.  Abuses were rampant but who would know? Families often were discouraged from visiting.   The timeline we're about to look at traces some key events of the last 50 years or so, and by no accident: a lot has happened since then. The Civil Rights Movement of the 50s and 60s mobilized advocacy efforts for DD populations–as well as other under-valued groups–as never before. Events from the Evolution of Rights timeline:  

• "Standards for Public Training Services," 1953.  Here, the American Association on Mental Deficiency made an effort to introduce efforts at treatment into the institutional setting.

 

• "Declaration on the Rights of the Mentally Retarded," 1971.  This was a United Nations declaration that people with mental retardation have and should be guaranteed the same rights as all other human beings and advocated placing protections on those rights.
• Wyatt vs. Stickney, 1972. A court found that the rights of residents in an Alabama facility were being violated.  The decision resulted in the development of 49 Principles of Service, most importantly including: 
• Establishment of Human Rights Committees in human services organizations;

 

• Standards set for Qualified Mental Retardation Professionals (QMRPs); 
• Establishment of minimum staff-to-client ratios; and 
• Recognition of residents' right to treatment, as opposed to the warehousing model.

  Specific requirements of the Principles of Service can vary from state to state.  

• Willowbrook Expose´, 1974.  Before Geraldo Rivera became a talk-show host, he was a serious investigative reporter.  His work included taking TV cameras into the Willowbrook State School in Staten Island, New York. 

  The graphic video record of the horrible living conditions endured by the adults and children who lived there created a huge public outcry nationwide. More tax money was allotted for providing better treatment.  

• HCFA begins "look behind" surveys, 1984. Ten years after Willowbrook, a U.S. senator who was struggling to find appropriate care for his son who has mental retardation charged that little had changed despite all the money the federal government had put into improving living conditions.

This discovery resulted in the Health Care Finance Authority being ordered to conduct  "look-behind" surveys in Intermediate Care Facilities (ICFs) to see if the level of care being paid for by Medicaid–a level of care now called "active treatment"–was being provided.  It wasn't.  Some facilities were closed down. States tightened supervision of facilities so as not to lose federal funding for their programs.  

• Americans with Disabilities Act, 1990. This legislation most importantly establishes standards of accessibility of public areas and facilities to people with disabilities and the concept of reasonable accommodation of disabilities in the workplace.

 

Residents' Rights in Wisconsin We have a responsibility not just to guarantee resident rights but also to teach CBRF residents what their rights are.  This is trickier than it sounds because many residents need more than someone just sitting down and reading them a list once a year. We need daily, consistent teaching strategies:

• Ask individuals what they want more often. You can probably relinquish at least a little more control over day-to-day decisions so residents can exercise their options.

 

• Recognize teaching opportunities. Rights issues surface regularly, with privacy being the most often-violated right.  Discuss the rights angles of these situations when they arise. Help the person apply the lessons whenever possible.

 

• Advocate residents' rights. Being an advocate means helping a person speak up for herself. Always document  advocacy so that other staff are aware of what the resident wants, and needs help with.

 

• Model behavior that asserts rights. Being passive means that people are taking advantage of you.  Being aggressive means that you are being disrespectful of others in the process of getting what you want and need. Proper assertive behavior lies between these extremes. People learn what they see.

 

• Help residents rehearse behaviors that assert their rights.  People learn more easily in environments that are not stressful to them, so informal role-playing can help residents pick up skills that they can eventually use in real-life situations.

 

• The right to be informed of one's rights
• The right to know the house rules 
• The right to be notified of service charges
• The right to be informed of the grievance procedure

This list has to do with rights that are related to the right to privacy:

• The right to physical and emotional privacy in toileting, bathing, any part of programming. People not directly involved in program never should be present during treatment except with the resident's express written or verbal consent. No one may search a resident's room or belongings without consent unless there's a reasonable suspicion of contraband and the person and/or guardian is present.

• The right to private phone communication. Reasonable time limits set in house rules are OK. The person with no source of personal funds for three days can make one long-distance call without charge to a source of help such as guardian, therapist, family member, attorney, or DHFS or other outside agency.

• The right to confidentiality of all treatment records and communications.  Discuss people's cases discreetly and only with staff who have a need to know.  Never discuss a resident's treatment with another resident. 

• The right to private mail correspondence If the person can't afford writing materials, the CBRF must supply a couple of stamped envelopes each week. Also: residents open all their own mail. If for some reason you have to open a resident's mail, you must have consent and s/he must be present when you open it.
• The right to privacy in their sleeping or living unit (bedroom).  Staff will always knock and receive permission prior to entering an individual's room or personal living space to respect the person's privacy.  Units have entrance doors which are lockable by the individual, unless they are otherwise assessed by their team to not have the intellectual/physical capacity to use a key or door lock, or as indicated in their support plan due to a safety or behavioral concern.  Refer to Dungarvin Policy and Procedure Concerning Key Holders (B-33).  Staff will always know and receive permission prior to entering an individual's room or personal living space to respect the person's privacy.

The resident is guaranteed these choices:

• Choice of service providers

• Choice of treatment

• Choice of medical services/providers

• Choice of religion & religious activities

Rights "not to"

• The right not to perform unpaid labor except for tasks related to personal housekeeping or other chores established by house rules, or is a part of the person's ISSP.

• The right not to be subjected to abuse This includes physical, sexual and mental abuse; seclusion; physical and chemical restraints; and misappropriation of funds.

• The right not to be recorded without consent E.g.; photographs and videotaping, except for what's needed for I.D. What they are getting at: the person cannot be used for promotional or advertising purposes.  Photos taken for fun on holidays and the like are OK.

 

• The right not to be treated as incompetent unless so established by a court of law (in other words, the person has a guardian).

Rights of Free Association

• The right to family contacts and help in arranging them, if needed.

• The right to receive visits. Adequate time and private space must be provided.
• The right to fair treatment The person always is treated with courtesy and respect. Also, a resident can't be segregated from others on the basis of the type of disability s/he has, but only on compatibility and/or safety issues.

Property Rights There are some rights connected with owning & disposing of property:

• The right to have one's own belongings. S/he has and uses his/her own clothing and own furnishings as space permits. 

  S/he also enjoys the right to dispose of property as s/he sees fit, including giving gifts on festive occasions. But staff may not borrow or accept money or sell anything to a resident. 

• The right to manage one's own money. If the person is not able to manage his/her own money, s/he must authorize the agency or another person of his/her choosing to do it; his/her funds must be kept separate from other funds; and s/he gets a written monthly account of how the funds are spent.

Rights Related Directly to Services

• The right to prompt & adequate treatment. Staff must respond without delay to immediate physical and emotional needs.  Examples: supplying first aid or getting the person medical attention when appropriate; helping a person clean up after soiling him/herself; helping the person cope with an emotional crisis.

• The right to refuse treatment unless the person has a guardian who makes such decisions. This includes refusing medications. Of course you document refusals and check with a supervisor for instructions if this occurs.

• The right to adequate staff-to-consumer ratios & staffing patterns as established by needs assessments and Service Plans. If a resident in the CBRF needs 24-hour supervision, staff must be on the premises at all times the resident is present; if one resident needs continuous care, the staff must be on duty and awake at all times.
• The right to live in the least restrictive environment possible. The person has a right to maximize skills at self-direction and independent living in as home-like a setting as we can make it. 
• The right to a safe environment. This is your Job 1: to ensure each resident's basic health and safety.  Yes, keeping a safe environment that is also the least restrictive for an individual can be a balancing act sometimes and an ongoing job for a resident's IDT.
• The right to daily opportunities for recreation & leisure activities. TV does not count.  An adult day program might.
• The right to access the community. We make monthly activity schedules to make sure residents get out of the CBRF regularly if they want.

• The right to help with increasing or  maintaining communication skills to get wants and needs known.

• The right to help in maximizing socialization, as in learning how better to get along with others and strengthen relationships.
•  The right to consumer-specific services. What's fair is not that everyone gets the same, but that each person gets what s/he needs. Services must be individualized, a big reason for the ISSP–which we must have in place within 30 days of a person's move into a CBRF.  We assess interests, abilities and needs objectively and re-assess at least once a year through the annual staffing process.
• The right to evaluate services. Once a year, before the annual staffing, the resident and guardian or other representative rate their level of satisfaction with the agency's services, and can comment on any aspect of them including the level of respect they are getting from staff, how they like the food, and so on.

  There is one more right to discuss: the Grievance Procedure.  Normally we expect individuals can share concerns and ideas on a regular and informal basis, but when issues cannot be resolved through regular channels, individuals and their guardians have recourse through our Grievance Procedure.   Grievance Procedure Our grievance procedure is given in writing to every individual in our programs and/or the guardian, as part of the Service Agreement. The basic procedure is this:

• Any individual or guardian may file a grievance.  It may be registered with the case manager, Dungarvin management, DHFS, or an organization that provides advocacy services such as the Wisconsin Coalition for Advocacy for Persons with Mental or Physical Disabilities or the State Board on Aging.

• The Community Support Manager or Program Director responds, within one week if the complaint is verbal, two weeks if written.

 

• Appeals can be made if the issues are not resolved to the person's satisfaction.  Details can be found in the Dungarvin Service Agreement.

Here's where you come in: you are expected to act as an advocate by assisting as needed with the Consumer Grievance Procedure. Assistance might mean providing access to the case manager, DHFS or advocacy organization; or helping the individual express a grievance or appeal, or to find an attorney. Follow the procedures objectively. Never, ever try to discourage or prevent an individual from filing a grievance or from exercising any of the other rights we have discussed.   Coercion or retaliation against a resident who files a grievance is strictly prohibited.  Retaliation against you for helping a resident file a grievance is likewise prohibited.  

Let's look at the list of abuse terms we need to define:  

• Physical Abuse

 

• Mental Abuse

 

• Sexual Abuse

 

• Aversive Procedures or Deprivation

 

• Neglect

 

• Restraint

 

• Seclusion

 

• Misappropriation of Property

  In this course we will use the term "abuse" as a general term to describe the various forms of maltreatment, which is in line with the terminology you will find in our P&P.  We will use the term "misconduct" to describe staff behavior that is abusive to residents.  

• Physical abuse is staff misconduct that could reasonably be expected to cause physical pain or injury.  The act does not have to cause actual injury.  Physical abuse also has to be intentional and non-therapeutic, so an accident or event that results from a good-faith effort to provide treatment do not count as abuse.

  Examples of physical abuse would be hitting, kicking, punching, slapping, pinching, biting, shoving, or burning.      

• Mental abuse is oral, written, or body language that a reasonable person would believe to be distressing, demeaning, disparaging, humiliating, derogatory, harassing, frightening or threatening to another person.

  Examples of mental abuse would be shaking a fist in a person's face, yelling, swearing, or throwing an object at or near a person. Sometimes, the abuse is more subtle: staff give residents "cute" nicknames, use sarcasm, tease, or "joke around" with people in a way that degrades them or makes them uneasy.   Can you think of other examples?   Take a look at the "11 Kinds of Disrespect." These are some of the more subtle ways that residents might be mistreated. 11 Kinds of Disrespect  

1. Intentionally avoiding or ignoring one individual while giving attention to another.

 

2. Any form of retaliation by staff.

 

3. Destroying trust by making unreasonable promises.

 

4. Ignoring complaints.

 

5. Speaking about a resident in front of her as though she is not there.

 

6. Not respecting the person's status as an adult.

 

7. Not respecting physical and emotional privacy.

 

8. Denying an individual's feelings and choices.

 

9. Demonstrating low expectations of a resident.

 

10. Setting an individual up to fail.

 

11. Withholding pertinent information from a resident.

 

• Sexual abuse.  In this context we are talking about staff actions with consumers.  Period. It does not matter who initiates the contact; it is still considered sexual abuse by the staff person. There are three types of sexual abuse:

 

• Sexual conduct or molestation. This is intentional touching or fondling of the breast, genitals, or anus.

Example:  A staff person fondles the breasts of a resident while she sleeps.  

• Sexual penetration. This is any contact between the sex organ of one person and the sex organ, mouth or anus of another person; or anything else inserted into the sex organ or anus of another person.

  Example: A staff person engages in oral sex with a resident.   

• Sexual exploitation.  This is the sexual use of another person for gratification, advantage or profit.

  Example: A staff person takes a nude photo of a resident and sells it to another person.  

• Aversive procedures or deprivation we classify together because they both are basically punishment. You are not allowed to hand out your own consequences for behaviors you don't like.  Here are some examples of aversive or deprivation procedures. Unless they are spelled out in the person's ISSP/behavior plan/doctor's order–and most wouldn't be–these are bad ideas:

     

• Taking away a person's dinner;

 

• Taking away any of a person's stuff;

 

• Limiting a person's water intake;

 

• Restricting a person's normal access to adequate ventilation, hygiene facilities, medical attention, legal counsel, and necessary clothing;

 

• Denying a person her normal contact with family or friends.

 

• Neglect

  Abuses are the result of staff acts.  Neglect, on the other hand, is more often due to omissions: intentional failures to act. Neglect happens when a resident, due to staff negligence, does not get what she needs, such as:  

• Food

 

• Clothing

 

• Shelter

 

• Medical services

 

• Regard for his/her rights

 

• The amount of supervision s/he needs to be safe and healthy

 

• The amount of attention s/he needs for mental and emotional health

  When it comes to attention, at least two things need to be said to address common staff mistakes: 1) In general, when a resident seeks your attention, give it.       The person may seek attention in an inappropriate way but there's still a basic human need behind the behavior.  And, 2) If a behavior plan calls for "planned ignoring" of a particular behavior make sure that it is only the target behavior you ignore, not the person.   Some examples of neglect:  

• A resident burns her hands repeatedly on the kitchen stove.  No one bothers to take steps to prevent this from happening again and again.

 

• A resident soils himself and is unable to clean himself up.  Staff are aware that he is soiled but finish paperwork before someone helps out 45 minutes later.

 

• A door alarm sounds.  The staff person decides not to check on it because it malfunctions sometimes.  When she finally does check a few minutes later, a resident is missing. 

 

• Three residents of a CBRF require staff on the premises at all times, but the overnight staff leaves the house at midnight for 10 minutes to go buy a soda.

  Can you think of other examples, or do you have a question about whether something would be neglect? As these examples show, harm doesn't necessarily have to happen for the problem to be neglect.  Only the risk of some sort of physical, mental, or emotional damage arising from staff carelessness or negligence has to occur, no matter the actual outcome.          

• Restraint can be physical or chemical.
• Physical restraint is any manual technique or device that interferes with a person's freedom of movement, normal functioning, or normal access to a part of the person's body–and is difficult for the person to remove him/herself.  Putting someone in a locked room would also be physical restraint.

 

• Chemical restraint is when psychotropic medication is used for convenience or discipline and not required for treating medical symptoms.

  Are restraints ever OK? Yes. In an emergency you may use restraint; for example, to keep a person from running into the street in front of a car.  Also, physical restraint may be approved for use under these circumstances:  

• DHFS must approve use of the restraint and may place conditions on its use; for example, set how often a person in restraint must be checked on

 

• The resident's primary doctor must authorize use of a restraint in writing

 

• Only staff trained in the proper use of a restraint may apply it

 

• Any use of a restraint, including adverse reactions to it, must be documented in the resident's record

   Follow all procedures and conditions to the letter.  Restraints can be dangerous.  For example, people can have trouble breathing while restrained in certain positions or for too long.  Never feed a person who is in restraints. Also, think about if someone couldn't move or leave a room and you suddenly had to evacuate the house because of fire.   Use of medication as part of a behavior management plan is OK as long as these conditions are met:  

• The person must be free of unnecessary or excessive medication

 

• Medication must never be used as punishment 

 

• Medication cannot be used for staff convenience

 

• Medication cannot be used as a substitute for a proper, comprehensive treatment plan

  Medication used properly and meeting these conditions is not considered chemical restraint.  

• Seclusion means that staff have taken action to separate a resident physically or socially from others.

We are normally not allowed to make this kind of separation.  The only times we should are:  

• When we are properly following a behavior treatment plan.

 

• When a person has a contagious disease and we are following quarantine protocol.

 

• Or, when a resident has voluntarily agreed to a cooling-down period in an unlocked room.  We cannot just  "send" people to their rooms whenever we feel like it.

 

• Misappropriation of Property can happen with a person's money or other property.

  It includes:  

• using or taking away a resident's property without permission, with intent to deprive her of it

 

• gaining the person's property by deceiving them (e.g., making a promise with no intent to keep the promise)

 

• using a resident's money in any way that is not specifically authorized

 

• using a resident's i.d.(s) to obtain something of value

Indicators of Abuse 3. What our policy requires is that you report all indicators. Your report will trigger decisions on the actions needed to correct the situation.   There are four kinds of indicators of abuse: physical, verbal/vocal, behavioral, and circumstantial.  The first three are what you observe of residents.  Circumstantial indicators are what you observe about other staff. Some of these indicators are contained in Appendix IV of  Dungarvin P&P B-2 so you have access to a list anytime.  Even so, now is a good time to ask any questions you have so far about these indicators.  

• Physical Indicators are visible marks found on a person's body or clothing; pain; evidence of deception or fraud; or missing property.

  Since there are so many of these physical indicators, we will further break down this category 4 ways into physical indicators of physical abuse, sexual abuse, neglect, and material abuse.  

• Of physical abuse examples are cuts, scrapes, puncture wounds, swellings, bone fractures, sprains, dislocations, broken teeth, missing patches of hair, welts, or burns; evidence of over-medication; pain with no physical marks visible; bruises, especially those with unusual shapes or on parts of the body that usually don't get injured (for instance, the back).

  Some people get bruises and such regularly just in the course of their usual activity.  Watch that the explanation for an injury fits the type of injury involved.  

• Of sexual abuse physical indicators would include genital or anal abnormalities such as pain, bleeding, bruising, discharge, swelling and/or itching. There might be frequent and/or painful urination, sexually transmitted disease (STD) or pregnancy.

  Also, blood or semen on clothing, towels, or bedding, or torn or missing clothing are indicators.  

• Of neglect the physical indicators would be that the person has an odor, is not dressed for the weather, has soiled clothing or bedding, has untreated medical and/or dental problems, has dehydration without illness that would explain it; has constant hunger or weight loss.

  You might see physical indicators in the house itself: lack of food in the home, unsafe or unsanitary conditions, repairs needed.  

• Of material abuse you see signatures on checks that don't look like the person's signature; personal belongings might be missing, or evidence of financial deception.

 

• Verbal/Vocal Indicators have to do with what the resident is saying, or in the case of someone who cannot speak, what vocalizations or other noises the person is making.

          Examples: Unusual or prolonged crying or screaming; unusual or prolonged crying or screaming in the presence of a particular person; complaints of not being treated well by a particular person; or accusation that a person has abused him/her.   Also: contradictory statements; unexplained or unusual new knowledge or words of a sexual nature; expressed interest in a new sex-related topic that cannot be explained; new complaints of pain in neck, back or genitals; complaints of frequent headaches or other aches, pains or illness.  

• Behavioral Indicators of abuse or neglect are actions that another person can observe; especially sudden behavior changes.

 

• Abuse indicators: Increased aggression; dramatic mood changes; sudden withdrawal from activities the person used to enjoy; changes in eating habits; changes in sleeping patterns; anxiety; ambivalence; suicidal gestures; reappearance of old behavioral challenges; fear of certain people, places or objects; fear of confinement; overcompliance; non-responsiveness; or running away.

 

• Neglect indicators: person begs or steals food.

  Watch for sudden avoidance patterns: a resident who always goes to bed at 10 p.m. has begun staying up very late and resists suggestions to go to bed earlier.  A resident starts avoiding a certain person or a certain area of the house, or doesn't want to take baths anymore, etc.      

• Circumstantial Indicators are what we can observe about other caregivers.

  Examples: negative behavior such as hostility, anger, disrespect, apathy, or callousness toward self and others; history of maltreating others; threatening to harm others; joking about harming others; finding humor in the pain and suffering of others; alcohol or drug abuse.   Circumstantial indicators specifically for sexual abuse would include all the examples we've covered so far, plus a couple more:  

• Caregiver seeks isolated contact with particular individuals

 

• Caregiver seems preoccupied with sex: brings pornographic material to work, or engages in sexual harassment or other inappropriate or excessive eroticism

Reporting Abuse  

• All program staff are mandated reporters when it comes to abuse.  If you suspect abuse of a resident, you must immediately contact your supervisor to report it.  This is a legal obligation and penalties can be imposed if you do not meet this obligation.  If your supervisor is the accused, or not available, contact the on-call supervisor, Area Director or Senior Director.

 

• You are authorized to contact law enforcement if you believe protection is needed to prevent further victimization.

 

• You have a right to be protected from reprisal from the accused person.

   

• A report triggers a number of actions:

 

• An Investigator is assigned

 

• If necessary, steps are taken to protect the alleged victim from reprisal

 

• Medical attention is sought if needed for the victim for treatment of injury &/or sexual assault exam

 

• Family and/or guardian is notified

 

• DHFS is notified within 24 hours (if a weekend or holiday, the first working day after).

 

• The Investigator completes a written summary of the report and investigation findings.

 

• An employee found to have abused or neglected a resident will be reprimanded, given a probationary warning, or dismissed.

 

• Reporting helps prevent abuse. Abuse and neglect will happen sometimes in a population that is as vulnerable as the one we work with.  If you report it when you witness it, you have a hand in prevention in several ways:

 

• You help prevent further victimization of the resident

 

• You help prevent other residents from being victimized

 

• You help cultivate an atmosphere that does not tolerate maltreatment, which by the way is good not only for the residents but for your own working conditions, if you think about it.

What about false reports?  Do they happen? Yes.  Should you worry about it?  Probably not. Investigators are allowed to take into account a resident's past history in making false reports.   Please do not make your own "judgment call" with a person who has a reputation for false reports.  Like the boy who cried wolf, residents who make false reports may be in the most danger of all.  Report indicators regardless of where they come from.