People Are People by zhangyun



People Are People
Labels and People First Language
                       Transparency: People are People

As recently as 1975, a popular medical guide classified people with mental retardation as
morons, imbeciles, and idiots. Other official classifications have included mongoloid and
epileptic, which continue to be used in some settings, and retardate.

Today, we know about the dehumanizing effects of labels. We know that all human
beings deserve respect, not because of who they are or how much they earn, but just
because they are people.

Labels create prejudice and misconception. Some people in our society are shunned
by others because of labels placed upon them. Even worse, some people are neglected or
even tormented because of those labels.

Research tells us that the first words you hear describe a person are the words you
remember most clearly about that person. For example, when you hear “retarded child,”
or “epileptic woman,” or “autistic man,” the words imprinted on your mind are retarded,
epileptic, and autistic. In other words, people tend to remember the disability rather than
the individual when this type of language is used.

Preferable terms are:
       A child with mental retardation;
       A woman with epilepsy; and
       A man with autism.

These preferable phrases are examples of people first language. Progressive workers in
the field of developmental disabilities services use this type of language.

                       Activity: Instruct the class to try to use people first language throughout the
                       training. Ask them to monitor each other and you, the trainer, as well, in order to
                       help everyone remember how they should speak in reference to people with
                       disabilities of any kind.

                       Activity: Ask the group for examples of non-people first language. Write these
                       on a flip chart. Beside them, list terms that are people first language and
                       discuss the differences.

                       Transparency: People are more than their disabilities.


People are more than their disabilities. They smile; they laugh; they are proud of the
work that they do. They are sons and daughters, brothers and sisters, husbands and
wives. They are musicians and athletes. They are employers and employees. They are
homemakers, laborers, volunteers, and sponsors. Therefore, if you must refer to a
person’s disability, you must use respectful, non-labeling language. You must not use
terms such as:
       “The handicapped...”           Say instead, “people with disabilities;” “people
       “The MRs or the CPs...”        with mental retardation or cerebral palsy;”
       “The epileptics....”           and “people with seizure disorders.”

Labels imply homogeneity and class distinction. These terms seem to indicate that all
people who may have a single characteristic in common, such as epilepsy or mental
retardation, are alike in every other respect. Labels lump people together, somehow
dissolving their individuality.

The statement “Mary is a disabled child” focuses on the fact that Mary has a disability
rather than on Mary as a child.

                       Discussion: What can be said instead?
                       Okay - “Mary is a child with a disability.”
                       Best - “Mary is a child.” Unless this is a discussion about her disability,
                       why does it need to be mentioned at all?

Terms like “the mentally retarded” and “the handicapped” focus on the fact that a group
of people have disabilities, and these phrases emphasize the differences between “us” and
“them.” “They” are handicapped, or “they” have mental retardation. “You” don’t have
those things and, by implication, you must be better in some way...and that’s better, not
just better off.

The subtleties of grammar create very different pictures in people’s minds. The verb
“is” describes a state of being; it describes an entire person. “Mary is disabled” paints the
picture of a disability. On the other hand, the verb “has” describes only one aspect of an
individual. “Mary has a disability” describes Mary as a whole person who happens to
have some kind of disability, but whose disability is only one characteristic of a multi-
faceted individual. “Mary has cerebral palsy” indicates that Mary has a disability, but
that she also has other attributes, talents, and qualities.

                       Activity: Discuss the handout “You and I” (or “Us and They”) and make the
                       point that you don’t say that a person with hay fever is a hay-fevered person, and
                       you don’t say that a person who has had a heart attack is a heart-attacked person.
                       Why should you say that a person with a disability is a disabled person?


Defining Terms
                         Transparency: A functional definition of a developmental disability...

                         Activity: Explain the term “functional definition.” Ask participants to write
                         down their own definition of “developmental disability.” Give them a couple
                          of minutes and then ask them to share with the group. Using a flip chart, make
                          a list of their definitions and discuss their different aspects. Have the group
                          create a single definition upon which they can all agree. Using this definition,
                          introduce the federal definition and tie it in.

                         Transparency: A Developmental Disability is...

Federal Definition of Developmental Disability
Developmental Disabilities Assistance and Bill of Rights Act Amendments of 1994:
According to this federal document, the term “developmental disability” means a severe,
chronic disability occurring in an individual five years of age or older that
       1. is attributable to a mental or physical impairment or combination thereof;
       2. is manifested before the individual attains age 22;
       3. is likely to continue indefinitely;
       4. results in substantial functional limitations in three or more of the following
           areas of major life activity:

                         Transparency: Seven major life areas.

                a)   self-care;
                b)   receptive and expressive language;
                c)   learning;
                d)   mobility;
                e)   self-direction;
                f)   capacity for independent living; and
                g)   economic self-sufficiency; and

       5. reflects the individual’s need for a combination and sequence of specialized,
          interdisciplinary, or generic services, supports, or other assistance
              (a) of lifelong or extended duration
              (b) that are individually planned and coordinated.

       (Exception: When the term is applied to infants and young children, it specifically means
       individuals from birth to age five; and those individuals have substantial developmental delay or
       specific conditions - either congenital or acquired - which will probably result in developmental
       disabilities if services are not provided.)


This definition provides the criteria by which an individual is judged eligible or ineligible
for services for which the federal government supplies some or all of the necessary

The definition intentionally limits the number of people who can access certain resources.
In many states, including Oklahoma, some programs are categorical; that is, they may
serve only one or two disability groups and do not use the federal definition of
developmental disabilities to determine eligibility or entitlement.

                       Transparency: Most Common Developmental Disabilities...

Mental Retardation
Not everyone who has a developmental disability has mental retardation. For example,
some people who have cerebral palsy or autism have average or above average mental

A person with mental retardation learns more slowly than other people. The ARC, a
national organization that advocates for people with mental retardation, describes a
person with mental retardation as “one who, from childhood, develops consistently at a
below-average rate and experiences difficulty in learning, social adjustment, and
economic productivity.” The degree of mental retardation a person has affects how much
and how quickly he or she can learn. Mental retardation occurs once in every 33 people.
Approximately ninety percent of people with mental retardation have only a mild level of
mental retardation.

All people have similarities with and differences from each other. Height, weight,
hair color, eye color, likes and dislikes, abilities and weaknesses, state of health - all of
these things vary from person to person. An individual with mental retardation is just
that, an individual who happens to have mental retardation. As an individual, that person
has his or her own likes and dislikes, abilities and weaknesses, hair color, eye color, and
so forth. That person has much more in common with the rest of the individuals in
society than s/he has differences. People with mental retardation and other types of
developmental disabilities have talents and abilities that should be developed through
individualized education, job training, and physical, occupational, music, speech, and
recreational therapies.

Those people are entitled to enjoy typical, everyday experiences and lives. They have the
same rights and responsibilities as everyone else.


Epilepsy is a chronic brain disorder characterized by some type of seizures, which can be
manifested in several forms - i.e., uncontrolled body movements, unusual sensations, or
altered perceptions. Sometimes seizures involve unconsciousness. Some people have
psychomotor seizures during which they may continue normal activities but exhibit
amnesia or loss of awareness.

Approximately two percent of the general population experience seizures, and only a
small number of those people have conditions severe enough to be classified as having a
developmental disability. Most people with epilepsy control their seizures with
medication and are able to enjoy all aspects of their lives with little or no interference
from their condition.

                       Video: Epilepsy, International Epilepsy Foundation

Cerebral Palsy
This condition results from physical damage to the brain which, in turn, affects muscle
coordination. In mild form it may affect only some fine motor skills, such as writing or
sewing. In severe form it may affect walking, talking, and even breathing and

Damage to the brain may occur before, during, or after birth, or it may result from
inherited metabolic conditions or from diseases during pregnancy, such as Rubella or
toxemia. Evidence of the damage may be immediately noticeable, or it may not be
detected until months or even years after occurrence.

Cerebral Palsy is not progressive, especially if managed with range of motion and
flexibility exercises, and it is not contagious. It also cannot be cured, but many
technological devices are available to assist individuals with cerebral palsy to be more
independent and to lead fuller lives. Therapies and/or surgery are also helpful to some.

Usually present at birth but not diagnosed for 2-3 years, autism affects a child’s ability to
communicate effectively and to process information from his/her environment. Children
with autism may appear withdrawn and unresponsive and they seem to see the world
around them differently from the way other people see it.

Characteristics of autism usually surface by age three and they range from mild to severe.
People with autism may develop slowly in the areas of physical, social, and learning


skills, and they have difficulty dealing with changes in their routines. However, some
possess exceptional ability in certain areas, such as music and mathematics.

Autism is not contagious. While its causes are unknown, it is known that autism is not
caused by poor parenting practices.

Autism is characterized by disturbances in the following areas:
      a) speech and language,
      b) rate of development,
      c) ability to relate to people and things,
      d) perception, and/or
      e) use of mannerisms.

Other Conditions
Muscular Dystrophy, Spina Bifida, and Cystic Fibrosis, hearing impairments, and vision
impairments are a few of the conditions that can interfere with a person’s physical and
social development and ability to learn. If any of these conditions cause substantial
functional limitations in three of the major life areas, they can be classified as
developmental disabilities.

Multi-Sensory Impairments
Multi-sensory impairments constitute visual and hearing loss, either full or partial. The
combined loss creates varied and unique challenges for the individuals and their families,
friends, and helpers, with communication presenting the largest challenge.

Deafness. It is a profound hearing loss (more than 90%) in which the other senses are
relied upon for communication - taste, touch, smell, and sight. Deafness affects more
than 22 million Americans. People with partial hearing loss who still rely upon hearing
to receive information, even with difficulty, are referred to as “hard of hearing.” Hearing
loss is the single most prevalent chronic physical disability in the United States.

People with deafness communicate in many ways, depending upon the type and degree of
loss and the presence of other disabilities. They may use speech, sign language, finger
spelling, writing, body language, facial expressions, or a combination.

Blindness. Described as the complete or partial loss of vision, blindness does not
necessarily limit an individual’s abilities to live a complete and independent life. Acute
development of the other senses (taste, touch, smell, and hearing) compensates to a large
degree for the loss of sight. Special equipment, such as talking clocks and calculators,
braille watches and writing equipment, and tactile books, assist greatly with
independence. Animals, especially dogs, can be trained to give assistance to someone
with blindness, and these animals are allowed in places of business.


Perhaps the greatest challenge to a person with visual impairments is conquering the
perception of helplessness that blindness creates in the minds of other people.

Combined Sensory Impairments. If blindness alone creates the perception of
helplessness, then the combination of blindness and deafness can seem insurmountable to
people who do not have them. Consequently they tend to ignore the people who do have
them. The combined loss of sight and hearing often leaves individuals feeling isolated
and alone and can result in depression. Depending upon the degree of loss, s/he must
explore new sensory areas and information must be communicated to him/her through a
variety of techniques and assistive devices.

One Man’s Experience. A man with a severe hearing loss from birth learned that he was also losing his
sight. In addition, he had physical disabilities from a car wreck in which he was involved as a young child.
His family worried about his safety and survival. They could not imagine how he was going to have any
kind of meaningful life. They grieved over life’s lack of fairness in its treatment of their loved one. After
all, he had already overcome so many things, how could he possibly deal with another, and one as severe
as the loss of his sight?

The man allowed himself a very short time to be sad about his dilemma and then he took the necessary
steps to deal with it. He moved across the country from his family so that he could take advantage of
special training for people with loss of both sight and hearing. He learned methods of communication; he
learned how to travel safely; he learned how to take care of his personal needs; and he learned the skills
for doing a new kind of work. He made new friends in his new home. He also met and fell in love with a
woman who had similar disabilities. They married, enjoyed a wonderful honeymoon trip, and are now
living in their own home together. They are productive, happy, and independent.

Dealing With It. The man in the above story exemplifies the old saying “Where there’s a will, there’s a
way.” People without disabilities have a hard time imagining having to get through life without sight or
hearing. Most find the idea totally mindboggling. In fact, some psychologists say that the fear of facing
life with a disability is the thing that prevents many people without disabilities from acknowledging people
who have them.

On the other hand, workers in the field of developmental disabilities services know that “real life” is
possible for everyone. A little adaptive functioning, a few of the right supports, and some occasional
technology combine to achieve what other people consider to be miracles, but what you know are really
just the events of everyday living. For those who have overcome obstacles and vaulted the barriers of
disability, every day is Independence Day. And at some level it is possible for everyone.

In Need of Support
Not everyone who is eligible wants or needs the services of the Developmental
Disabilities Services Division of DHS. You try to provide only what is both needed and
desired by the individual and his/her family. To do otherwise would be to intrude into


people’s lives. Many individuals come into our system only in times of crisis, such as a
death in the family or the loss of a job. They neither want nor need our services at other
times. In fact, they prefer to avoid the stigma and/or the bureaucratic red tape involved at
other times. Sometimes all a person wants is information that can be provided over the
phone or attained by attending a training session. Many families have the resources
necessary to meet the needs of their loved ones with disabilities and they want to avoid
the intrusion of a government entity into their lives.

A person with a learning disability may not fall into the developmental disabilities
category if s/he is not severely limited in three out of the seven life areas. Other people
may not qualify because their disabilities occurred after the age of 22, such as disability
resulting from a head trauma. Also, strokes, car accidents, or war-related injuries would
not ordinarily result in developmental disabilities, since they usually occur in adulthood,
even though the people involved may need the same kinds of help that individuals with
developmental disabilities need. Developmental disabilities services are designed for and
available to people whose disabilities occurred during the developmental stages of human
growth. People with other types of disabilities or whose disabilities occurred after age 22
must obtain their services through other programs.

The causes of developmental disabilities are not always known. There are hundreds of
known causes of mental retardation alone. Some conditions have a genetic basis. Others
are caused by external factors. For example, premature birth, maternal drug and/or
alcohol abuse, poor nutrition, and poverty may contribute to the occurrence of
developmental disabilities.

Developmental disabilities cannot be cured. They are long-term and chronic. However,
the impact of the disability on an individual’s life may be lessened with appropriate care
and support. That care and support is the purpose for the existence of the Developmental
Disabilities Services Division (DDSD) of the Department of Human Services.

                       Transparency: Some Causes of Mental Retardation (Pre-, Peri-, and Postnatal)


Those who cannot remember the past are condemned to repeat it.
George Santayana, Life of Reason, Reason in Common Sense, Scribner’s 1905, p. 284.

The Wisdom of Santayana
               Transparency: Those who cannot remember the past are condemned to repeat it

The quote by Spanish born writer, naturalist and professor, George Santayana is meant as
a reminder that if lessons are not learned, they must be experienced again and again and
again until they are not only learned but are never to be forgotten.

The truth and timelessness of Santayana’s statement are proven daily around the world by
people who make the same mistakes that others made before them and from which
important lessons were not remembered. Nowhere is that more evident than in the field
of developmental disabilities.

Regarding Differences
Differences of Enhancement
Historically, people with characteristics greatly different from those of the majority of
society were set apart. If they possessed characteristics which were considered greater
than normal, they were often given positions of importance in the community. For
example, people gifted with the ability of storytelling were held in high esteem in ancient
societies. The people of the communities supported them with elaborate gifts and
periodically the storytellers enchanted listeners with their exciting or exotic tales at
community gatherings. Sometimes a storyteller lived in the home of an important family
and that family’s esteem grew even more because of his presence.

Today, societies still honor people who possess characteristics that are considered
valuable. Public schools offer special classes for “ the gifted and talented.” Colleges
award scholarships to people who have strong academic abilities or unusual talents. The
entertainment world pays large sums of money to individuals with performance abilities.
Every field of endeavor gives special awards to its most able people.


Differences of Difficulty
In some tribal or aboriginal societies, people who possessed characteristics that made life
more difficult for them than for others - deafness, blindness, lameness, etc. - were
honored as gods or messengers of gods. Like storytellers, they were given special places
in the communities and they were supported both personally and financially by others.

On the other hand, in more “advanced” societies, such people were often thought to be
evil. Society considered that those individuals were being punished for their own evil
doings or for those of a parent. People who manifested some type of mental or emotional
differences, such as mental retardation or various types of mental illness, were thought to
be possessed by evil spirits. They were often subjected to various sorts of exorcism
techniques, some of which resulted in the death of the individual whose “spirits” would
not be exorcised. They were considered to be menaces who preyed on society, or they
were feared as objects of dread and children of the devil. Sometimes they were simply
viewed as objects of pity or ridicule or charity - drains on society because they would
always have to be supported by others. In these latter cases they were often described as
“eternal children” or “holy innocents.”

In early day America, some Puritans considered family members with disabling
characteristics, and especially with those characteristics which were mentally or
emotionally disabling, to be an embarrassment, a sign that there was something deeply
wrong with the family. They tried to hide those individuals, keeping them locked in attics
or basements away from the eyes and ears of their neighbors. Those who were able to do
menial tasks were often endentured to farmers or business owners who allowed them to
live in barns and clean the stables, among other tasks. The food that they ate and the
straw beds on which they slept were considered just payment for their work.

Systems and Changes
Around the middle of the Nineteenth Century, states began devising systems by which to
care for people with disabilities, particularly mental disabilities. Most of those systems,
by today’s standards, are considered crude and even abusive. At the time, however, they
were seen as revolutionary. The following outline shows how services evolved.

                                           Historical Outline

           National/Global                                      Oklahoma

1850s -First institutions built. They house
       people with mental retardation, mental


         illness and those later classified as
         “criminally insane.”

1861-1865 - The War Between the States

1869 - Sir Francis Galton, cousin of Charles
       Darwin, published Hereditary Genius,
       in which he concluded that social differences
       among human beings were the result of
       innate endowment. He referred to this
       phenomenon as “Social Darwinism,”
       correlating it to Charles Darwin’s theories
       of natural selection.

1876 - Founding of the Association of
       Medical Officers of Institutions for
       Idiotic and Feeble-Minded Persons
       (later to become the American
       Association on Mental Retardation).

1890 - 5,254 persons with mental retardation
       reside in institutions in the U.S.

1896 - First Special Education class opens in
       the U.S. in Providence, Rhode Island.

1904 - Sir Francis Galton presented his paper
       on Eugenics, a term he coined and
       which he defined as “the scientific study of the
       biological and social factors which improve
       or impair the inborn qualities of human
       beings and of future generations.” He
       advocated a deliberate “selection” which
       would raise the “quality” of the human race.

1907-1939 - 30,000+ people in U.S.
      institutions are sterilized, mostly
      without their knowledge or against
      their will, and at least half of them               1909 - Creation of the Oklahoma Institution for the
      in California.                                             Feeble-Minded in the city of Enid (later
                                                                 renamed the Enid State School).
1910-1940 - Eugenics study at Cold Springs
      Harbor, New York. The study to prove
      that a better breed of human beings could
      be produced through efforts such as
      keeping races separate and sterilizing
      people who were “genetically unfit.”

                                  Handout: Quotes from “The Enlightened”

1914-1918 - World War I

1929 - The Wall Street Crash and the beginning
       of The Great Depression

                      Video: Freaks, 1932 movie (Horror section at Blockbuster’s.)

1934 - Third Reich’s passage of the sterilization
       act, an effort by Adolph Hitler to


      produce the perfect Aryan race through
      elimination of those who are less than perfect.
      By 1945 some 3-400,000 people with
      disabilities are sterilized in Germany and
      eastern Europe, and 70,000+ are put to death
      under Operation T4 in 1940-41.

1939-1945 - World War II and the Holocaust

1946 - Inception of the Joseph P. Kennedy, Jr.
       Foundation for raising the public
       consciousness about people with
       mental retardation - their rights,
       their capabilities, and their needs.

                      Video: Excerpt from TV movie The Young Kennedys
                             Kennedy’s daughter’s lobotomy and results.

1948 - By this time every state has at least 1
       institution for people with mental
       retardation and nationwide there
       are 116,828 people living in them.

1950 - First convention of the National Association
       of Parents and Friends of Mentally
       Retarded Children (later the National
       Association for Retarded Children) is
       held in Minneapolis.

1950-1953 - The Korean War

1953 - Dale Evans Rogers publishes Angel                     1953 - A state hospital for people with epilepsy in
       Unaware about her daughter who has                           Pauls Valley is converted to a state facility for
       mental retardation and advocates                             people with mental retardation (Pauls Valley
       keeping children with disabilities at home.                  State School)
                       Transparency: At the time of Robin’s birth, no one admitted to having a Down’s
                       syndrome child. Those little children were hidden from public view.
                                                                   Dale Evans Rogers speaking of her daughter.
1954 - President Dwight Eisenhower proclaims
       the 2nd week in November as “National
       Retarded Children’s Week.”

1960 - There are 346 state-operated institutions for
       people with mental retardation in the U.S.

1963 - Legislation transfers funding for mental                  1963 - 2,300 people reside in the Enid and Pauls
       retardation programs from the National                           Valley facilities served by a total of 709 staff.
       Institute of Mental Health to the National
       Institute on Child Health and Human                                Oversight of the facilities is moved from
       Development.                                                       the Department of Mental Health to
                                                                          the Department of Institutions, Social and
                                                                          Rehabilitative Services (formerly the
                                                                          Department of Public Welfare, and later
                                                                          named the Department of Human Services).

1964-1973 - The Vietnam War - America’s                         1964 - The Hissom Memorial Center opens in Sand


      direct troop involvement in Vietnam.                              Springs, as a “state-of-the-art” facility
                                                                        providing residential services to people with
                                                                        mental retardation in the northeastern
                                                                        quadrant of the state.
1968 - Eunice Kennedy Shriver organizes the
       First International Special Olympics Games
       at Soldier Field in Chicago, Ill. Today
       more than 100 countries host the games.

1971 - Establishment of federal standards of
       care for institutions requiring specific
       staffing levels, development of treatment
       plans, provision of active treatment.

1972 - Geraldo Rivera conducts expose’ on
        the deplorable conditions at the
       Willowbrook State School in New York.
       Lawsuits begin to be filed- Wyatt vs.
       Stickney in Alabama, Halderman vs.
       Pennhurst in Pennsylvania.

                     Video: Willowbrook, the 2001 edited version

1974 - In the Minnesota case Welsh v. Likins
       the U.S. District court rules that
       people with mental retardation
       have a right to receive treatment in
       the least restrictive environment.

        Approximately 200,000 persons live
        in institutions for people with
        mental retardation in the U.S.

1975 - David McKay Publishing Co. publishes
       Howard James’ book, The Little Victims:
       how America Treats Its Children, an
       expose’ of institutions in which Pauls
       Valley State School is slated as “a good one.”

                     Handout: Excerpt from The Little Victims: How
                               America Treats Its Children by Howard James
                              (Describes PVSS in early 1970s as “a good one.”)

                                                               1980 - KOCO-TV, Channel 5 out of Oklahoma City,
                                                                      broadcasts the expose’ Oklahoma Shame,
                                                                      about the Pauls Valley State School and the
                                                                      Enid State School.
                                                                      Newspapers also published stories.

                     Handout: Newspaper article about problems in institutions.

                     Discussion: What happened in the interim between the book and the news story?
                                  (Jos. Deacon retired. New ideas about what is “good.”)


1981 - The federal government establishes the           1981 - The Group Home program, established by
       first Home and Community-Based Services                 former first lady Donna Nigh, becomes the
       program offering states the opportunity                 first community residential option for adults
       to use federal dollars to create alternatives           with mental retardation.
       to institutional care.
                                                              Homeward Bound, Inc. formed in eastern
                                                              Oklahoma by eight families advocating for
                                                              family support services and for state-supported
                                                              community options for their children with
                                                              developmental disabilities.

                                                        1985 - Oklahoma initiates the Home and
                                                               Community-Based Waiver program which
                                                               permits services to be provided outside an
                                                               institutional setting.

                                                               Homeward Bound, Inc. files a class action
                                                               lawsuit against the state claiming inadequate
                                                               care at Hissom and seeking other services.

1987 - Pennhurst State School in Pennsylvania           1987 - U.S. District Judge James O. Ellison
       closes as result of lawsuit.                           finds in favor of Homeward Bound.
                                                              Orders all residents to be moved out
                                                              of Hissom.
1988 - Willowbrook State School closes.
                                                        1989 - The Robert M. Greer Center is built as an
                                                               additional unit of the Enid State School to
                                                               serve people with a dual diagnosis of mental
                                                               retardation and mental illness.
1991 - The Persian Gulf War
                                                        1992 - The Enid State School and Pauls Valley State
                                                               School are renamed the Northern and
                                                               Southern Oklahoma Resource Centers.

                                                        1994 - The Hissom Memorial Center closes its doors
                                                               after moving 410 individuals to community

                                                        1999 - As of April, 418 people reside at Enid, Pauls
                                                               Valley and the Greer Center served by a total
                                                               of 1,400 staff. Some 2,600 people receive
                                                               community services through the Home
                                                               and Community Based Waiver.
                                                               Approximately 950 of those are Hissom class
                                                               members. Another 2,500 are on a list of
                                                               people awaiting services.

                                                        2000 - The state begins to provide services to people
                                                               on the waiting list through the new In-Home
                                                               Supports Waiver, providing a set dollar
                                                               amount to children and adults with special
                                                               needs who live in their own homes or with


                                                     their families.

As the world enters the twenty-first century, we must realize mankind has not progressed
far past the threshold of human rights. In some locales, people still feed “imperfect”
children to the alligators; to prevent promiscuity, young girls’ genitalia are surgically
altered; women can be put to death for uncovering their faces in public; political prisoners
can be jailed for life; peaceful demonstrators can be shot down by the military; and in the
United States, where special laws have been passed to ensure that people with disabilities
are granted the rights with which they were born, still many are denied.

Some progress has been made, but we must keep moving forward.

Making Choices
                       Transparency: A CHOICE indicates or implies an end or purpose which
                                      requires exercise of judgment.

People have the right to make choices about things in their lives. According to Webster,
making a choice requires an individual to make a decision about something based on a set
of facts concerning the situation. Choice-making is a developed skill. It isn’t just a


matter of picking the prettiest dress to buy. The purchaser usually must also consider the
size of the garment, what it costs, the type of care required, and whether it is appropriate
for the occasion for which it is needed.

Choicemaking is a learned skill, and some people are better at it than others. Your duties
include helping the individuals with whom you work to learn to make good choices.

Choices involve limits. No one has unlimited choices, even if they have unlimited funds.
One person’s choices cannot infringe upon the rights of others. Life situations also
dictate the limits of our ranges of choice. Few people would choose to take medication
except to avoid becoming ill or for recovering from an illness. Some people would not
choose to work, except that survival is costly. Some choices are limited by the chance of
personal jeopardy, such as the choice of whether to jump off a building when one is not a

Everyone makes daily choices. Most of us choose what to wear, what to eat, and how to
spend our time. If we have jobs, we even choose to go to work. If we choose not to work
for too many days, we don’t have jobs for very long.

People have some choices even within limits. Harry works in order to afford a place to
live, clothes to wear, and food to eat. Even though he must do specific things at work,
whether he particularly wants to or not, he probably can make some choices concerning
how to accomplish the work or the order in which he does the work.

Choicemaking is a form of problem-solving and involves answering a series of
questions. What is the situation and how do I want to change it? What are the available
choices/solutions? What fits my needs? What can I afford in terms of money, time, or
risk? Which choices meet the criteria? Which do I like the best? What is the best

                       Activity: Break into groups of 3-5 people. Consider this problem:
                       John lives in a group home with five other men. His Great-aunt
                       Tillie, a wealthy woman in Tanzania whom John met only one
                       time, died at age 103 and left him $250,000.00. John does not have
                       a guardian, but Mr. Smith, a local businessman, is John’s friend and
                       a member of his team. At John’s request, Mr. Smith has always
                       helped John manage his money. Now, however, John feels like he
                       is really rich. He wants to buy a big-screen television set, a 9-room
                       house on an acreage, and a race horse. How do Mr. Smith and the
                       rest of John’s Personal Support Team help him make wise decisions?
                       Each group must make a list of considerations, a list of
                       recommendations that they think might satisfy John as well as
                       protect him, and create a strategy for helping John make good
                       decisions. Share with the whole class.

Values Affect Choices


                      Transparency and Activity: We value...
                      (Display this and brainstorm a list of things that people generally value.)

We make choices based on our basic values. We form our values based on what we have
been taught and the experiences we have had. Most people have values which have been
influenced by parents and other close family members, friends, teachers, church leaders -
all the people who have impacted their lives in both good and bad ways.

                      Activity: 1) Brainstorm people and events that have impacted the average
                                   person’s life. Make a list.
                                2) Discuss how people’s lives have been impacted. Make a list of
                                    ways and compare probable results to those in the first list.
                                3) List ways in which we can impact peoples’ lives to help them
                                    form the kinds of values that will serve them well.

                      Handout and Discuss: Citizenship Rights Training Manual

Legislative Timeline
Laws Passed                                                Purpose/Intent


Enacted 1970 (Public Law 91-517)
The Developmental Disabilities Assistance         Established moneys for services
and Bill of Rights Act                            and facility construction; established
                                                  agencies such as the Developmental
                                                  Disabilities Council, the Governors’
                                                  Councils on DD, and the Protection
                                                  and Advocacy Council; and it
                                                  founded the University Affiliated

Enacted 1973
The Rehabilitation Act                            The first civil rights law that
(Section 504)                                     guaranteed equal opportunity
                                                  to Americans with disabilities.
                                                  Contained language similar to that
                             Overhead             in other acts which prohibit
                             Transparency         discrimination.

Enacted 1975 (Public Law 94-142)
The Education for All Handicapped Children Act    Guarantees the right of all children
                                                  with disabilities to a free, appropriate
                                                  public education and established the
                             Overhead             early intervention program. Covers
                             Transparency         children ages 3 to 21.

In 1986 PL94-142 was amended
and became PL99-457 (IDEA)
The Individuals with Disabilities Education Act   Established the early intervention
                                                  program for children ages 0 to 3 yrs.
                                                  Attempted to eliminate exclusion and
                                                  neglect of people with disabilities
                                                  from the public schools.

Enacted 1990 (ADA)
The Americans with Disabilities Act               Gives to individuals with disabilities
                                                  the same civil rights protection as
                                                  that provided on the basis of race,
                                                  sex, national origin, age, and
                                                  religion. It guarantees equal
                                                  opportunity in employment, public
                                                  accommodations, transportation, and


Right of Consent
Any decision which invades the person or privacy of any individual requires the consent
of the individual or of that individual’s guardian, or a court must mandate an action. For
example, no one’s photograph can be published in a newspaper without consent, unless
the person has broken the law, in which case the public has the “right to be informed,” or
unless the photograph is taken during a public action in which the individual participated,
such as attendance at a public event. Every individual should be encouraged to make
decisions for him/herself, and should be given the necessary information with which to
make wise and informed decisions.

Surgery and Medication. Can an individual refuse medical treatment? Yes, if the
individual can fully understand the consequences of such a decision.

Even the Team cannot decide to allow surgery to be performed on an individual. If the
individual has no guardian, s/he must consent to the procedure. If a guardian has been
appointed, the guardian must consent. In either case, papers must be signed giving
permission for the surgery. If a physician and the Team deem surgery necessary for the
individual and the individual refuses, or if the individual’s guardian refuses, the team and
the physician must get a court order to proceed; otherwise, the surgery cannot be done.

In recent years a young man living in an institution contracted cancer. He was of legal age and had no
guardian. For awhile he underwent all the recommended treatments for his condition. Eventually he tired
of them and their debilitating effects, however, and he refused to further endure them. He believed that he
would not recover from the disease, and he felt that a shorter life with more quality was preferable to a
slightly longer life with less quality. After much deliberation he was adjudged capable of understanding
the full consequences of his decision. Treatment was halted. Several months later he succumbed to the
disease, but he was able to direct the events of his life for its duration after treatment was stopped.

Since he required no guardian, no one else could give consent for his treatment; therefore, when he refused
consent, he could not be treated. Had he been adjudged incapable of fully understanding the consequences
of his decision, the court would have appointed a guardian and the guardian could have given consent for
treatment. At that point, treatment could have been administered, even under sedation, if necessary.

Right to Access vs. Restriction of Rights. No one can arbitrarily decide to force an
individual to stop participating in any activity in which s/he participates legally, such as
smoking. If the case manager believes that smoking is bad for Johnny, s/he cannot just
take Johnny’s cigarettes away from him. Johnny has the right to continue smoking,
despite anyone’s opinion, unless he has a guardian who says he must quit.

On the other hand, the team has a responsibility to educate Johnny about the effects of
smoking and the possible dangers and to ensure that he understands. They must try to


help him make a fully-informed decision concerning smoking - but once he makes a
decision, they must honor it.

Similarly, staff cannot decide to lock away food or to restrict an individual’s food intake
without the consent of the individual or the individual’s guardian (or parent, if the
individual is a minor). The team can make such a decision if it involves the health and/or
safety of the individual. For example, if the individual has been diagnosed with diabetes
and s/he doesn’t fully understand the risks of eating foods with high sugar content, the
team must consider restricting that type of intake. If health problems are not a
consideration, the team cannot decide to restrict desserts because the individual “might
gain weight” or is “a little chubby.”

Any time a team restricts an individual’s right to anything, the restriction must be based
on documented evidence that the individual does not understand a concept or is unable to
execute an action. For example, if a person does not understand the concept of money,
the team may restrict his/her use of funds. However, the restriction should be
accompanied by a plan to lessen or eliminate the restriction through education of the
individual or by finding alternatives.

A restriction of anyone’s rights is a serious matter. No person can arbitrarily restrict the
rights of another. All of us value our rights of access - even when we want to access
something that may not be good for us!

                       Discussion: Would any of the following listed practices ever be appropriate? If
                       so, when and why? If not, why not? What might be the intentions of the staff
                       who enforced these restrictions? Can you think of other well-intentioned
                       restrictions which might actually be a violation of rights?
                                  Mandated bedtime for people in a group home;
                                  Restricting access to friends;
                                  Restricting access to personal possessions;
                                  Restricting movement/access around the home or in the

Advocacy is acting on behalf of another person. The term is used to describe programs
designed to defend the rights and interests of people with disabilities who have difficulty
defending their own rights and interests.


An advocate is not necessarily sponsored by a formal program. An advocate may be a
friend, a residential staff member, a job coach, a parent or foster parent, a lawyer, a
guardian, a teacher, a case manager - anyone who takes specific action to defend the
rights and interests of a loved one, student, or client.

The degree of involvement may include:
       a) insuring due process or having a right enforced;
       b) engaging in a compensatory justice action of making things equal for all; or
       c) corrective measures aimed at making up for previous disadvantages the group
          or individual has suffered.

The ARC and The Arc
Established in 1950 as The Association for Retarded Children, the organization known
later as “The Association for Retarded Citizens” and now simply as “The Arc” led the
movement for institutional reform and, subsequently, for deinstitutionalization and the
creation of community alternatives.

The initial name change came about because many of the people for whom the group advocated were no
longer children. They were adults who desired and deserved to be treated as adults. Then, in 1991, the
group sought to drop the term “retarded” from its name. Many parent members had sons or daughters
with conditions that required the same services as those needed by people with mental retardation, but who
did not have mental retardation. They did not want their loved ones to have to deal with an additional
label. Also, many self-advocates felt that the term “retarded” was stigmatizing.

The group decided to adopt as their name the acronym by which they had been identified
since inception, which also spelled the name of a symbol of safety and survival - the Arc.

The evolving advocacy of this organization and other parent groups played a major role in
defining each decade’s standards for programs serving people with developmental

 Other Groups: Many other groups and associations have been formed which advocate
for people with disabilities. Some are private, independent groups; others are funded by
the state or federal government; some are funded by religious organizations. Some of
those groups are:

        Organization                                 Telephones           e-mail and/or website
        Community Services Council
               of Greater Tulsa..................... 918/585-5551


       Donna Nigh Foundation..................... 405/341-2980 ext. 2311
       Nat’l Alliance for the Mentally Ill......405/840-4746
       Oklahoma Association for Children’s
              Institutions and Agencies....... 918/245-3132
       Oklahoma Developmental Disabilities
       Oklahoma Disability Law Center
              Tulsa.......................................918/743-6220  (All law center telephones
                                                          800/226-5883  are V/TDD equipped)
              Oklahoma City.......................405/525-7755
       Oklahoma Institute for Child
       Oklahoma Office of Handicapped
              (Parents Reaching Out)..........405/619-0500
       United Cerebral Palsy of Oklahoma...405/917-7080

                       Discussion: Briefly discuss these and other groups. If the participants
                       can name others, brainstorm a list.

Each individual has the right to advocate for himself/herself. Every person with
developmental disabilities should be encouraged to realize his/her own worth and the
power of self-advocacy; that is, the power to influence his/her own future.

                       Transparency: Never doubt that a small group of thoughtful, committed
                       citizens can change the world. Indeed it is the only thing that ever has.
                                                                             Margaret Mead

As a group, people with disabilities can bring about changes in attitudes and beliefs,
sometimes merely by their presence. The more they participate in daily life and in local,
regional, and national affairs, the less unusual their presence will seem to others. The
more common their presence, the more acceptable. The more acceptable their presence,
the better the understanding of others. The better the understanding of others, the less
likely their rights will be denied and the more likely that barriers will be removed.


There are many things other than just being present that people with developmental
disabilities can do to advocate for themselves. They can join existing organizations or
form new ones through which they can lobby local councils, state legislatures, and the
Congress to ensure that their rights are protected and that they have the supports and
services they need with which to participate in society.

                       Activity: Handout printed advocacy situations. If a large group, break into
                       smaller groups of 4-5 each. Let individuals role play self-advocacy situations.
                       Afterwards, have the groups discuss why the advocacy worked or did not work
                       and what the benefits were from the situation if the advocacy was successful.

                       Activity: Brainstorm things that people with developmental disabilities might
                       be able to do to advocate for themselves.

The Grievance
Under Oklahoma Statutes Title 10, the Office of Client Advocacy (OCA) provides a fair,
simple, effective and timely system through which problems can be resolved for
individuals receiving services through the DDS Division of DHS. OCA policies are
written to ensure that persons filing grievances are free from restraint, coercion, reprisal,
and discrimination, and that every request for action receives a thorough review, fair
consideration, and correction when appropriate.


A Grievance is a problem or concern with which an individual needs assistance in order
to solve it, including a complaint of unfair treatment. At the request of an individual, an
unresolved problem is processed as a grievance. Many inquiries never reach the formal
grievance stage. Efforts are made on a local level to solve problems informally to the
satisfaction of all concerned. If those efforts fail, then a grievance is usually filed.

Any client may file a grievance, or any person who knows the client and is interested in
his/her welfare may file a grievance on his/her behalf. If a group of clients share the same
problem, they may file a group grievance. Grievances involving reportable incidents, such
as abuse, neglect, exploitation, or mistreatment, must be reported to OCA immediately.

Every provider and agency or facility providing services to clients must have a
system for resolving grievances. Every public and private facility and provider agency,
DHS County Office and DDSD Area Office must designate an employee to serve as
Local Grievance Coordinator (LGC). OCA’s advocates assigned to SORC, NORCE, and
Greer serve as the LGC for those facilities.

Every client must be notified of his/her right to exercise the grievance process and must
be informed as to how to access the system.

Grievances are recorded on form OCA-GR-1 and given to the Local Grievance
Coordinator for processing. If the problem cannot be resolved at the local level, there are
three formal levels of resolution. The problem may be resolved at any of those levels, or
the grievant is notified of the decision of the Board of Directors or the Appeals
Committee as to final resolution.
                       Activity: Divide into groups of 3-5. Give each group a problem to resolve.
                       They should create three possible solutions to each problem. Ask them to share
                       with the rest of the class the nature of the problem, their solutions, and under
                       what circumstances they believe each solution would work best.

Abuse, Neglect, Exploitation, and Mistreatment

Lesson I: Definitions and Situations
Any group of people who must rely on others for all or part of their daily care faces a risk
of possible abuse, neglect, or exploitation. While most caretakers are honest, caring
people who would never knowingly take advantage of or cause harm to anyone for whom
they had responsibility, a few people, for whatever reason, will. Because of that, the rest
of you must be able to identify the signs of maltreatment. You must be alert to the


possibility that some people are irresponsible or will take advantage of others, and you
must be ready to prevent such incidents from occurring and to report them when they do
occur. You must also understand that the failure to report is the same as committing
those acts yourselves.

In Oklahoma, cases of suspected abuse, neglect, or exploitation should be reported to:
       1-800-522-3511 = The DHS Abuse Hotline for reporting to Child Welfare (for
          children under age 18), and Adult Protective Services (for adults age 18 and
          older), or
       1-405-521-3491 = Office of Client Advocacy - Oklahoma City Metro area
       1-800-522-8014 = Office of Client Advocacy - other areas

State Policies and Procedures concerning any kind of maltreatment can be found in the
most current Oklahoma Department of Human Services Policy Manual. (Pages from this
manual follow.)

                       Transparency: (definition of abuse)

Abuse: causing or permitting
       (A) the infliction of physical pain, injury, sexual abuse, sexual exploitation,
           unreasonable restraint or confinement, or mental anguish, or
       (B) the deprivation of nutrition, clothing, shelter, health care, or other care or
           services without which serious physical or mental injury is likely to occur to
           an individual by a caretaker or other person providing services to that

Physical Abuse: Any act that physically injures a person and results in harmful
effects on the person’s physical or emotional well being. This includes encouraging or
allowing someone else to inflict the injury. Any caretaker who stands by and watches an
individual being abused by anyone, and does not try to step in or report it, can be held
accountable for the abuse. Examples of abuse that should be reported if an individual is
harmed or injured, or if the person is threatened with such harm or injury:
*         hitting an individual with hand, fist, foot, head, body, or object;
*         shoving, tripping, pushing, pulling, scratching, pinching, cutting, or biting an
*         raping an individual or forcing other sexual acts;
*         using unnecessary or excessive physical or chemical restraints;
*         giving a medication not prescribed or forcing an individual to take excessive
*         allowing an individual to be abused by other individuals;
*         using corporal punishment to discipline.

Signs of Physically Abusive Situations: Physical injuries from assaults, cruel
discipline, the over use of physical or chemical restraints, and unnecessary or incorrect


medication may result in any of the following signs or marks and may have occurred in
these situations:
         Marks and /or Welts -
                       You may observe bruises, welts, or other physical injury because someone tied
                       an individual to a chair or bed with rope or tape.
         Bruises can provide specific information about possible abuse; look for:
            a. Matching bruises on both upper arms, from shaking.
            b. Clustered bruises on trunk from repeated striking.
            c. Bruises resembling an object.
            d. Old and new bruises – this may mean the injury is/has been repeated.
        Cuts, Punctures, Scratches -
                       You may observe these because someone jabbed an individual with a sharp
                       instrument, such as a pencil, or scratched an individual with fingernails .
          Broken Bones and Skull Fractures -
                       This may occur when someone pulls an individual out of bed or hits his/her head
                       against a wall and it has resulted in a broken bone or skull fracture.
          Burns, especially unusually located -
                       This may show up because someone placed an individual in a scalding hot tub
                       of water or purposely burned him/her with a cigarette.
          Human Bite Marks -
                       This might be the result of a caretaker’s biting an individual to teach that
                       individual not to bite others or to discourage grabbing or touching.
          Internal Injuries -
                       This may indicate that an individual was purposely given alcohol or something
                       else which resulted in sickness or internal injury, or was over-dosed
                       with anti-diarrhea medicine and caused to have serious constipation.
          Head bruises or lumps -
           A subdural hematoma is a bruise on the brain that may result
           from a blow to the head. The symptoms may show up right away, or they may
           gradually build. Sometimes the symptoms are visible. Sometimes lumps and
           bruises are not visible, so the caretaker must be aware of other signs.
           The immediate symptoms are usually headache followed by loss of
           consciousness. The gradual symptoms are headache, personality change
            increasing tiredness, lack of alertness, and weakness on one side of the body.
           These symptoms can show up over a period of days, weeks, or even months.
                       The injury may have occurred when a caretaker became angry and struck the
                       individual with a fist or an object or s/he may have thrown something at the
                       individual which struck him/her.
          Suspicious Scars - You may observe scars on an individual which can indicate
           that this person has been a victim of repeated or past abuses.

Sexual Abuse: A particular form of physical abuse in which sexual activity that is
harmful to an individual, emotionally or physically, is initiated or accepted by
someone. Sexual abuse means:
       a) oral, anal, or vaginal penetration of an individual
                       by or through a union with the sexual organ of a caretaker or other person
                       providing services to the individual, or the anal or vaginal penetration of an
                       individual with any object;


       b) for the purpose of sexual gratification, the touching, feeling, or observation of
          the body or private parts of an individual
                      by a caretaker or other person providing services to the individual; or
       c) indecent exposure by a caretaker or other person providing services to the
                      with “indecent exposure” defined as someone exposing his/her genitals to an
                      individual or allowing an individual to view another person’s genitals for the
                      purpose of exhibitionism. This may include forcing or requiring a vulnerable
                      individual to watch sexual acts performed in his/her presence.

Sexual abuse, if not directly witnessed, is often difficult to discover, but may have
occurred if:
         You notice that someone offers affectionate gestures to an individual that are
            too lingering and seductive or become centered on the sex organs, anus and
         You learn from one individual that someone has raped another individual or
            allowed that individual to be raped by someone else.
         You observe injury to an individual’s genitals, anus, breast, or mouth.
         An individual tells you he/she was punished by a certain person for not
            finishing his/her work. (Any type of physical or corporal punishment is
            prohibited, including anything of a sexual nature.)
         You overhear someone making openly sexual remarks to or about an
            individual or attempting to talk an individual into sexual intercourse or oral
         An individual tells you that someone manipulates her genitals, buttocks, or
            breasts, or allows someone else to do this.
         You happen upon someone exposing his/her genitals to an individual or
            allowing an individual to view another person’s genitals for the purpose of
Signs of Sexual Abuse: People who may be unable or too frightened to talk about sexual
abuse may exhibit a number of behavioral and physical signs. Any one or several of these
signals could indicate abuse; you should be alert and watchful for them.
         Behavioral Signs:
                1. Extreme changes in behavior such as withdrawal or angry outbursts.
                2. Recurrent nightmares or disturbed sleep patterns and fear of the dark.
                3. Regression to more infantile behavior, such as bedwetting, thumb
                   sucking, or excessive crying.
                4. Unusual interest in or knowledge of sexual matters or expressing
                   affection in inappropriate ways.
                5. Fear of a person or an intense dislike at being left somewhere or with
                    (This usually indicates some type of abuse, sexual or otherwise.)
         Physical Signs:
                1. Torn or stained underclothing.
                2. Vaginal or rectal bleeding, pain, itching, swollen genitals, and vaginal


               3. Vaginal infections or venereal disease.

Verbal Abuse: The use of words, sounds, or other communications that are likely to
cause a reasonable person to experience humiliation, intimidation, fear, shame, or
degradation. These include, but are not limited to, gestures, actions, or behaviors by a
caretaker or other person providing services to an individual. Verbal abuse causes mental
anguish. Examples of verbal abuse are:
        Constant criticism, negative remarks, or expressions of anger or displeasure
                       causing an individual to feel unloved, unwanted, insecure, unworthy, etc .
        Teasing, humiliating, or degrading an individual, using derogatory names,
           degrading nicknames, or ethnic slurs, or talking to him/her in any kind of
           demeaning way.

Mental Anguish: This is the absence of intellectual and emotional well being, which
may also result in the failure of physical well being. Mental anguish is evidenced by
the feeling of being unwanted, insecure, unworthy, etc., which happens when the actions
and the attitudes of staff are negative and/or uncaring. Caretakers are responsible for
creating a home for individuals where they feel secure, safe and wanted. Sometimes
caretakers don’t do enough to actively create that kind of atmosphere, or they overtly do
things that destroy it, such as:
         Treatment or punishment that is not physically harmful in itself, but that is
            cruel and/or emotionally harmful,
                            such as, locking someone in a closet, or threatening physical harm to get
                             someone to do something.
           Forcing a person to engage in acts against his/her will, which threaten physical
            and emotional well being.
           Frequent verbal abuse or other displays of anger or displeasure
                        causing the individual to feel insecure, unloved, unwanted, or unworthy.
Signs of Mental Anguish: Signs of mental anguish usually show up as changes in an
individual’s behavior. Mental anguish is difficult to observe and prove; indications
        Recent or sudden changes in behavior; these could be withdrawal or angry
        Unjustified fear.
        Unjustified suspicion.
        Unwillingness to talk
        Unreasonable excuses for not engaging in treatment or program activities.
        Fear of a person or an intense dislike at being left somewhere or with

                        Transparency: (definition of neglect)

Neglect: Neglect can be defined as:
        (A) Failure to provide protection for an individual who cannot protect his/her own
        (B) The failure to provide adequate shelter, nutrition, health care, or clothing; or


        (C) The causing or permitting of harm or the risk of harm to an individual through
            the action, inaction, or lack of supervision by a caretaker providing direct
Neglect occurs when individuals are left alone, or ignored. Examples of acts of
neglect in the failure to provide necessary services and care, i.e. the exposure to risk of
harm or injury:          This can happen when caretakers do not use good judgment or when they put
                          individuals in dangerous circumstances.
*           An individual is not given medication on time;
*           An individual is not provided with adequate clothing for weather conditions;
                         example - no coat in the winter
            A person is allowed to lie or sit in feces or urine for an excessive amount of
             time;      caretaker is to change diaper or brief, clothes, or bedclothes when needed .
            Caretaker did not seek medical help promptly when needed.
            Caretaker did not provide adequate supervision;
                         individual was left unattended.
            Caretaker left individual waiting in an automobile while s/he went inside a
             building to take care of some business.
            Failure to provide program of stimulation or motivation or a plan of
             habilitation suited to an individual’s needs and abilities.
            Person allowed to mutilate him/herself
                         by sticking foreign objects into body openings or under skin, head-banging, or
                         burning him/herself.
*           Caretaker did not follow written program plan for feeding a dependent person,
             but fed the individual in a way that endangered him/her. (Gave “just one
             small bite” of food to an individual who requires feeding via a tube and caused
             the individual to choke or aspirate or put that person in danger of doing so.)
*           Failure to attend to toileting and hygiene needs;
                         did not bathe and groom as needed.
*           Caretaker did not use prescribed methods of lifting and transferring, as
            outlined in the individual’s IP, and exposed the individual to the risk of harm,
            injury, or physical pain.

Situations of Neglect: Unless neglect results in observable physical damage, it is
difficult to identify after it has occurred. Some indicators of present and past neglect are
given in the following examples:
         You are on your way to your work station when you notice a group of
             aggressive individuals has been left alone by a worker who is talking with his
             wife on the phone. Suddenly an individual is injured by another individual.
         You discover individuals left in the care of a worker who has fallen asleep or
             is intoxicated while on duty.
         You believe that a caretaker left an individual unsupervised while bathing and
             the individual was scalded by hot water or drowned or nearly drowned.
         You overhear that an individual is increasingly reluctant and fearful about
             leaving her room, and seems almost panicky.


Physical signs or symptoms of neglect: Things that may indicate that an individual’s
health or medical needs are being neglected include:
         Bleeding gums or loose teeth, but an individual is not seen by a dentist.
         Malnutrition or dehydration because a prescribed eating program was not
         Decubiti (bed sores) on individuals with physical disabilities because
           caretakers didn’t follow a prescribed positioning program.

Self-Neglect: The action or inaction of an individual which causes that person to fail
to meet the essential requirements for physical or mental health and safety. This
situation cannot occur in a congregate-living facility (institution). Self-neglect occurs
only in community-service situations and it:
         Occurs because of an individual’s incompetence, incapacity, or lack of
         Results in a determination of caretaker neglect, if a caretaker has

                      Transparency: (definition of Exploitation)

Exploitation: When a caretaker
       (A) Uses an individual or his/her resources for the profit or self advantage of the
           caretaker or someone other than the individual; and
       (B) It may involve the use of undue influence, coercion, harassment, duress,
           deception, false representation, or false pretense.

Financial Exploitation: This involves stealing, “borrowing,” using, or otherwise
purloining an individual’s financial or material resources. Examples of Financial
        Misusing an individual’s personal funds by selling things to him/her.
           Caretakers should not sell anything to individuals.
        Falsely or unlawfully obtaining items belonging to an individual, including
           buying things from that person. Caretakers should not buy anything from
        Trading any article by force or stealing from an individual.
        Bartering with an individual for items or money.
        Accepting articles in the form of gifts from an individual.
        Borrowing money or any item of value from an individual.
        Failure of caretaker to provide individual with designated monthly amount of
           SSI funds.
        Unauthorized cashing of checks.
        Misuse of personal funds held for safe-keeping.

Sexual Exploitation: This includes, but is not limited to, a caretaker’s causing, allowing,
permitting, or encouraging an individual to engage in prostitution or in the lewd, obscene,


or pornographic photographing, filming or depiction of the individual as those acts are
defined by state law. Examples may include:
        incest
        lewd or indecent proposals to a child or individual
        child or adult pornography
        rape
        prostitution

The differences between sexual abuse and sexual exploitation are often subtle and the signs for both are
essentially the same. All signs should be reported.

                          Transparency: (definition of Mistreatment)

Mistreatment:                By legal definition, this does not occur within community-
service situations, but rather within congregate-living facilities operated by the
Department of Human Services - the Northern Oklahoma Resource Center in Enid; the
Southern Oklahoma Resource Center in Pauls Valley; and the Robert M. Greer Center -
        (A) It is committed by a person who is responsible for that individual’s health and
        (B) It may be caused by any violation of statutes, regulations, written rules,
            procedures, directives, or accepted professional standards and practices;
        (C) It results in or creates the risk of injury to a resident;
        (D) It is not found to be abuse or neglect;
        (E) Its harmful results are usually unintentional.

Situations of Mistreatment: Mistreatment may have occurred when:
        An individual who requires supervision has been left unsupervised (or any
           other act which evidences a reckless disregard for the health or safety of a
        A caretaker does not take action to prevent delinquency, such as following up
           on a call from the school or other authorities (or any other act of omission
           which contributes to or does not prevent delinquency);
        Unauthorized or excessive force is used against a resident, such as
           unnecessary physical restraint;

Signs of Mistreatment: Observable signs of mistreatment overlap with the signs of
abuse and neglect. All should be reported. The signs may include, but are not limited to:
        Unexplained injuries, small or large;
        Fights breaking out among residents;
        Broken furnishings in the living area;
        Items missing from the living area or from among residents’ possessions;
        Unruly behavior by groups of residents, such as shouting, cursing, throwing
           things, etc.;


            Unauthorized absence of residents;
            Disarray in the living area or work location;
            A resident’s torn clothing;
            Apparent mental anguish demonstrated by a resident;
            Physical restraint used with an individual without reasonable cause (i.e., the
             individual “had his hands in a fist”).

Lesson II: Preventing Maltreatment
                          Transparency: An Ounce of Prevention is Worth a Pound of Cure.

You are probably familiar with the old saying, An ounce of prevention is worth a pound of cure. It comes
from the medical truth that preventing accidents and disease is better than curing them and it takes less
time and money. For instance, buying and using the safety equipment needed for telephone linemen when
climbing poles is better than curing broken bones after a fall, because:
          the price of equipment is cheaper than the price of a hospital stay;
          the time it takes to put on the equipment and use it is much shorter than work time lost to
             recuperate after an injury;
          wearing the equipment is virtually painless, whereas broken bones are very painful;
          a repaired bone never works as well as one that has not been injured - and it will probably
             develop arthritis.

Maltreatment is like that broken bone - prevention is much more valuable than cure because:
         prevention costs little; the cost of cure can be great to both the caretaker and the agency, as
            in the cost of liability, lost work time or lost jobs, training and replacing workers, etc.;


          prevention sometimes takes a little time; cure takes a lot of time for investigation, disposition,
           and recuperation for both the individual and the accused caretaker;
          prevention is painless; cure can be extremely painful for the caretaker in terms of
           discipline/termination, damage to reputation, and even court costs;
          prevention allows continued growth; but neither the damaged body/mind/spirit of an abused
           person nor the damaged psyche and reputation of a convicted caretaker ever make a 100%
           recovery, and that causes problems for a lifetime.

For the individual served, anything other than prevention of abuse is a violation of his/her
rights. Everyone has the right to be free from abuse, and that should apply doubly to the
vulnerable individuals with whom you work, because you have been hired to protect

Stress as a Factor in Maltreatment: Not all stress is bad. In fact, the total absence of
stress is death, and most people are not interested in being quite that stress-free. Positive
stress adds anticipation and excitement to life. However, too much stress, even if it is
positive, can leave a person feeling anxious or “tied up in knots.” If the stress is negative,
it can result in feelings of distrust, rejection, anger, and depression. Either way, stress can
cause a loss of behavior control, which can result in abuse. Therefore, stress management
is a must for workers in this field.

The degree of patience a person exhibits, the quality of work completed, whether s/he
snaps and growls or smiles and coos are all determined somewhat by the type and amount
of stress being experienced or how much stress has been experienced for a period of time.

Stress, then, has a great affect on any worker and the way in which that worker performs a
job. If a worker has been experiencing long-term stress in his/her life, s/he may feel bad
physically - tired and listless, with other vague symptoms - and s/he may be anxious or
depressed. These things contribute to a lack of patience and motivation. They may also
affect how s/he interprets what is said by coworkers or individuals. All of these things
may result in a bad temper, a short fuse, and under the right (or wrong) circumstances,
abuse of the individual that s/he has been hired to serve.

Few of us ever expect to commit abuse. It just happens, and it happens when someone
has lost control. Eliminating stress is neither a reasonable nor a desirable goal, but
managing stress and its effects can help prevent a loss of control, i.e. abuse.

Eight Steps to Managing Stress: Just as there are many sources of stress, and the
differences are as varied as the people who experience them, there are many possibilities
for managing it. All require work toward changing the source of the stress or changing
the reaction to it - and change is itself a source of stress. These eight steps help with
stress management:
        1. Become aware of your stressors and your emotional and physical reactions to
            them. Identify the people, experiences and events that cause you negative
            stress, and determine how you react to them both physically and emotionally.


       2. Recognize what you can change. Perhaps you can eliminate certain stressors
          from your life, or you can reduce their effect by managing them over a longer
          period, such as dealing with them weekly instead of daily. Maybe you can
          lessen their effects by taking more frequent breaks and leaving the premises.
       3. Reduce the intensity of your emotional reactions to stress. You may be
          attaching importance beyond what is necessary. Put the situation in perspec-
          tive and don’t expect to please everyone. Some people can’t be pleased.
       4. Learn to moderate your physical reactions to stress. Slow, deep breathing
          will bring your heart rate and respirations back to normal levels, and
          relaxation techniques can reduce muscle tension. Medications, when
          prescribed by a physician, can help in the short-term, but self-management is
          preferable for the long-term.
       5. Build your physical reserves. Getting regular exercise, eating well-balanced,
          nutritious meals, avoiding nicotine, excessive caffeine and other stimulants,
          and getting adequate sleep at consistent times all help to build good health;
          and maintaining good health helps in managing stress.
       6. Maintain your emotional reserves. Develop and maintain mutually supportive
          relationships; pursue realistic goals of your own (not that someone else has
          chosen for you and in which you have no interest); and be a friend to yourself
          - allow yourself to make mistakes and pat yourself on the back for doing well.
       7. Expect some setbacks. Expect some frustrations, failures, and sorrows in your
          life, and be prepared to deal with them. Don’t expect life to be perfect.
       8. Accept that some things cannot be changed. Nothing is as stressful as trying
          to control something over which you have no control or changing something
          that you have no power to change. Some things must be accepted; some
          others just aren’t worth the effort that change would require.

                      Transparency: The Serenity Prayer
                                    God grant me the serenity to accept the things I cannot change,
                                    the courage to change the things I can, and the wisdom to
                                    know the difference.

                      Activity/Handout: Hand out the list of stressors and have participants check
                      themselves. After participants have scored themselves, explain that Dr. Thomas
                      Holmes of the University of Washington School of Medicine, the designer of
                      this test, has found that people with high scores may be prone to illness:
                      *           about 80% with scores above 300 get sick “soon;”
                      *            about 50% with scores of 200-299 get sick “frequently;”
                      *            about 30% with scores of 150-199 get sick “easily.”
                      Trainer’s Note: People with poor stress management skills may be in danger of
                      a loss of control of their behavior at about the same levels at which they may be
                      prone to illness because of stress.

Decision Making Under Stress. Another reason for managing stress is the fact that
when under stress, people often make poor decisions. When a person’s job is caring for
another individual, poor decisions can greatly impact that individual in all respects -


physically, emotionally, and even socially. Professionals in the field agree that, the
greater the stress, the greater likelihood that a decision maker will:
         make hurried or premature choices;
         choose a risky alternative;
         not be able to tolerate ambiguity on the part of others;
         perceive a threat as being greater than it actually is or when one does not exist;
         tend toward aggression and escape behaviors;
         sacrifice long-range considerations in favor of immediate survival goals;
         be closed to alternative channels of communication;
         be distracted by fears and assumptions;
         be unable to think clearly;
         be unable to focus clearly on the problem at hand.

Poor decision making cannot be tolerated when another person’s life or lifestyle is at
stake. For these reasons and many others, workers should practice all available
techniques for managing the stress in their own lives and on the job. They should use any
means at their disposal to avoid situations which might result in any maltreatment of
individuals, such as the following:

General Rules for Prevention of Abusive/Neglectful Situations:
      1. Treat all people with dignity and respect.
      2. Do not make verbal threats. Words can turn into actions.
      3. Call for help if you are in doubt about how to handle a situation.
      4. Admit when you make a mistake. The people you serve can be right, too.
      5. Get enough sleep so that you are alert on the job and will have patience.
      6. Never drink alcohol or use tranquilizing/stimulating drugs before work.
      7. Don’t allow the desire for orderliness and good behavior to prompt you to use
         authority and control as the means by which to teach appropriate behavior.

Abuse Prevention Techniques to Use on the Job
1. Circumstance: When you come to work upset.            Things to do:
       a. Tell your supervisor about the problem; ventilate.
       b. If you are severely upset, take a sick day.
       c. Your ideas: __________________________________________________
2. Circumstance: When you have to break up a fight or calm an individual who is
agitated.      Things to do:
       a. Have help; do not intervene alone.
       b. Know approved techniques to deal with aggression.


       c. Give individuals a way of escape for changing their minds.
       d. If you must use restraint, have thorough knowledge of how to do so safely,
          legally, and according to a behavior support plan.
       e. Your ideas: __________________________________________________
3. Circumstance: When you are really angry with an individual, when s/he is
   cursing at you.       Things to do:
       a. Put some physical distance between yourself and the individual if possible.
          Only when your irritation has passed, return to the situation.
       b. Practice positive behavior support techniques.
       c. Your ideas: ____________________________________________________
4. Circumstance: When you feel you really dislike an individual.           Things to do:
       a. Discuss your feelings with your supervisor. If your feelings continue, arrange
          to limit contact with that individual.
       b. Your ideas: ____________________________________________________
5. Circumstance: When you have to get individuals to do things they refuse to do.
   Things to do:
      a. Make sure the activity must be done. If not, don’t push the issue.
      b. Have help; do not act alone.
      c. Use behavior management principles.
      d. Your ideas: ____________________________________________________
Lesson III: Reporting Maltreatment
                      Transparency: To report, call the local DHS office or the office of the district
                                    attorney or call the DHS Abuse Hotline at 1-405-522-3511.

Reporting Maltreatment: Oklahoma law requires that anyone having reason to believe
that a child or a vulnerable adult is suffering from abuse, neglect, mistreatment, or
exploitation must make a report to either the Department of Human Services or the office
of the district attorney in the county in which the suspected incident occurred.

“Any person who knowingly and willfully fails to promptly report any abuse,
neglect, or exploitation shall, upon conviction, be guilty of a misdemeanor.” Any
employee or provider who fails to report a possible incident may also be subject to
administrative/disciplinary action.


In other words, according to law, anyone having reasonable cause to believe that s/he has
witnessed abuse, neglect, exploitation, or mistreatment must make an immediate
report. This includes all direct care staff, police, doctors, nurses, teachers, etc. -

Concerning people who make false reports, the law says, “Any person who willfully or
recklessly makes a false report or a report without a reasonable basis shall be liable in a
civil suit for any actual damages suffered by the person(s) being reported and for any
punitive damages set by the court or jury.” In other words, a person who knowingly
makes a false report may be sued. Such a person may also be reported to local law
enforcement for criminal investigation and, upon conviction, will be guilty of a

Concerning people who make reports in “good faith” and exercise “due care,” people who
had reasonable cause to believe that maltreatment existed, the law provides that they
“shall have immunity from any civil or criminal liability that might otherwise be
incurred,” even when an investigation results in no findings of abuse, neglect, mistreat-
ment or exploitation. They will not be in trouble either with law enforcement or at work.

The Office of Client Advocacy (OCA): If a suspected incident involves an individual
for whom the Office of Client Advocacy is responsible, and the call is made during
regular business hours and days, a report must be made to that office in Oklahoma City at
1-405-521-3491 or 1-800-522-8014. On week-ends or after regular hours on weekdays, a
referral can be made through the Statewide Abuse Hotline at 1-405-522-3511.
Employees of the Southern Oklahoma Resource Center, the Northern Oklahoma
Resource Center, and the Greer Center may contact the OCA Ombuds staff at those

OCA keeps confidential the name of any person who reports an incident, but they will
also accept anonymous referrals.
Content of Reports: All reports of possible abuse, neglect, mistreatment, or exploitation
should include the following information:
         name and address of the individual being maltreated;
         name and address (if known) of the caretaker and/or perpetrator;
         description of the situation, including day, location, time, and people present.

Conditions of Reporting: A person does not have to have direct knowledge of an
incident to report possible maltreatment. S/he may have received information indirectly
from an alleged victim or from witnesses, or it may be based on physical or emotional
evidence. Nevertheless, the information must be reported.

                       Handout: Reporting forms


Interference: While Failure-to-Report and Making False Reports are misdemeanors
under the law, interference with an investigation of maltreatment is more serious.
Anyone charged and convicted of attempting to interfere with such an investigation is
guilty of a felony and may receive a fine and/or a prison sentence.

The Final Word: The State of Oklahoma has pledged to protect its vulnerable citizens
of all ages. Caretakers who abuse, neglect, mistreat, or exploit the people whom they
serve will be dealt with harshly. Prevention, of course, avoids the necessity for such
dealings and makes life easier for individuals and workers alike. Sometimes the best
preventative is simply to let others know that, should maltreatment of an individual occur
in your presence, or if you should hear of it...

                              you will report it!

Service System
In response to the Homeward Bound lawsuit, Oklahoma developed a range of services
that surpassed other states by instituting systems through which individuals could live in
their own homes, even purchase them, and receive the services necessary for indepen-
dence or near-independence. Although many other states incorporated community
services twenty years prior to Oklahoma, many stopped developing new services when
they started offering group homes as a residential option. Having seen some of the more
progressive services now offered in Oklahoma, those states are scrambling to “catch up.”

                      Handout and Discuss: Lists of services available in Oklahoma (from the
                      DDSD web site). Go over the lists. Discuss innovative options, such as Adult
                      Companion, Assisted Living, and Community Integrated Employment.

Public and private agencies work together to find solutions and provide assistance to
people with disabilities who want to live in their communities and function as
independently as possible.


                          Handout and Discuss: Resource Guide for Oklahoma’s Children
                          and Youth and Their Families.

Waiver Programs
The Home and Community-Based Waiver: In 1985 the Federal Health Care Financing
Administration (HCFA/Medicaid) created a home and community-based waiver to the
ICF/MR program permitting federal funds to be used to pay for services outside
institutional settings. Under Medicaid Section 1915(c) of the Social Security Act, the
requirement that a recipient must live in an institution had been waived.

Although the state took limited advantage of the opportunity, for the first time federal
moneys could be used in Oklahoma to pay for settings and services for individuals who
did not live in institutions. Funds were to be administered by the Developmental
Disabilities Services Division of DHS under the oversight of the state’s Medicaid
Agency, the Oklahoma Health Care Authority.

With HCBW funds, individuals could receive services in several areas: Case Manage-
ment, Residential Services, Habilitation Training Services (HTS), Home Health Care and
Therapy Services, Personal Care and Homemaker Services, Respite Care, and Employ-
ment Services. With approval, individuals could also utilize non-medical transportation
services, special communication services, and adult day care.

The 1987 settlement of the Homeward Bound lawsuit brought the waiver into full play in Oklahoma. Filed
as a class action, the lawsuit involved 410 residents and 540 former residents or resident-eligibles of the
Hissom Memorial Center. The settlement opened the doors both figuratively and literally for all of them to
live in the community and to receive services from community providers. The court ordered that the state
provide such services to all “Class Members” without regard to cost. Oklahoma immediately accessed the
Medicaid waiver funds as the first provisional source by which to comply with the demands of the court.

Although no mandate existed requiring the state to provide similar services to individuals outside the
Hissom catchment area, the Oklahoma DHS made those services available to residents of the state’s
remaining two institutions and to the general public who met eligibility requirements “as funding
allowed.” Expenses skyrocketed. Available funds would not stretch to cover everyone who needed and
wanted services. Almost at once a waiting list was created.

In 1992 the Oklahoma legislature passed an act authorizing the DHS to create the Family
Support Assistance Program, providing a cash subsidy to families raising children under
age 18 with developmental disabilities. As a result, approximately 950 children with
developmental disabilities are living at home with their families, who are receiving cash
assistance from the state.

Still, the need for waivered services grew. By the end of April, 1999, under various
programs, Oklahoma served more than 5,000 citizens with developmental disabilities,
2,600 of them through the Home and Community-Based Waiver, while 2,500 more
waited on an ever-growing list.


Approved by HCFA on November 16, 2000, eligibility age for waivered services in
Oklahoma was lowered from 6 years to 3 years and it was made retroactive to July 1,
2000. Currently waivered services are available to individuals aged 36 months and up.

The In-Home Supports Waiver: In response to the expanding need for community
services, Oklahoma DHS, again by the authority of Medicaid Section 1915(c) of the
Social Security Act, began to administer funds under a provision called the In-Home
Supports Waiver. Where HCBW funds had no artificial limit, the In-Home Supports
Waiver came with a set cap. Adults aged 18 years and up can receive no more than
$16,950 annually, and children under age 18 no more than $11,300 annually. If approved
as eligible, applicants have the option of accepting the IHSW funds or of waiting for
approval under the HCBW.

With In-Home Supports Waiver funds, adults may purchase Habilitation Training Services (HTS), Respite
Care, Physical Therapy, Speech Therapy, Occupational Therapy, Psychological Services, Employment
Services, Adaptive Equipment, Architectural Modifications to the home, and limited medical supplies.
Children may purchase Habilitation Training Services, Respite Care, and Architectural Modifications to
the home. Professional services for children must be accessed through all other available resources, such
as the public school. Children must also be evaluated by the Early and Periodic Screening, Diagnosis and
Treatment Program (EPSDT).

How Services are
Designed and
The Team Begins With The Individual
Most people receiving services from DDSD have a Personal Support Team to advise
them and help them determine their needs. The person receiving services is the most
important member of that team. The team will include the case manager, necessary
professionals, a guardian if one exists, and anyone else whom the individual and his/her
family decide should participate. The case manager assists in making that decision.

The Team is described as Interdisciplinary; that is, a group of people from various
disciplines who are needed to see that the individual receives necessary and appropriate


services to meet his/her needs. The team attempts to help the individual reach the
outcomes s/he and the family have identified as important to them.

Person Centered Planning
In an attempt to empower and support persons with developmental disabilities to realize
their own desires and goals, Oklahoma is working toward a philosophy called “Person
Centered Planning.” The fundamentals of this philosophy begin with listening to the
individual and honoring his/her own vision. The state has identified other principles.

   Self-determination is a must. People and families should be entitled to the freedom, authority, and
    support to control, direct, and manage their own services and supports.

   Personal relationships and community membership are valued. Inclusion, presence, and participation
    in community life must be promoted for all individuals with developmental disabilities.

   Families, neighbors, friends, coworkers, and classmates play important roles in people’s lives, and
    public systems must work hand-in hand with these networks to support the individuals.

   People and families must have meaningful leadership roles at all levels. Their participation must be
    welcomed, listened to, and honored when government and providers are involved in solving problems,
    making decisions, and pursuing excellence for individuals.

   Most people with developmental disabilities can make valuable contributions to their communities
    through doing real jobs, earning money, and even owning their own businesses. They must be
    supported and encouraged in these efforts.

   Families support people with developmental disabilities and know the individuals best; families must
    be supported and valued by those engaged in the system.

   Every individual must have easy and timely access to vital services and supports in order to achieve
    his/her personal vision and enjoy a quality of life.

   Individuals must be secure in their own lives, not exposed to abuse, neglect, or exploitation, and they
    must be afforded high quality health care. They must be assured the right to live their everyday lives
    as they choose in their own communities, exercising their own choices and pursuing their own dreams.

   There must be a commitment to excellence in all areas of support for individuals and their families.
    There must be a strong commitment to securing and retaining a high quality workforce, their ongoing
    training and education, and to continuous quality improvement.

Creating the Plan
Personal Profile. This is the first activity of the team meeting and it sets the stage for the
Vision and Planning phase. Methods for developing the profile may vary. A series of
interviews or conversations with the person and others who know the person may be
conducted. The Personal Profile should include the following information:
         Who is participating on the team? Who is here?
         Important people in the individual’s life.


          Places in the person’s life.
          The individual’s history and health.
          The person’s opportunities for choice making.
          How the person gains or loses respect.
          Strategies that work or do not work.
          Overall themes that impact the person’s life.

Other Assessments. Team members, such as therapists and direct contact staff, conduct
assessments using the individual’s desires as a focus for their findings and
recommendations. Especially they make recommendations concerning how the
individual may achieve the stated desires.

Writing the Plan. The team meets to develop the plan, addressing the needs and desires
identified by the person. A health-care plan is developed to ensure the best possible
health for the individual. Items of special training are identified and plans developed to
accomplish those objectives. If necessary, a behavior support plan is also developed.

The Rest of the Process
Implementing the Plan. Implementation strategies are developed as needed to achieve
the outcomes and/or address supports identified in the plan. Implementation strategies
are the steps for carrying out the plan and should be integrated into the person’s day.
Appropriate staff must be trained to carry out the strategies. (In state-run facilities, the
plan should be implemented and data collection should begin within 30 days of the
planning meeting.)

All parts of the plan are important, but the health-care portion of the plan is most
important if the individual has any health problems. There may be instructions which
affect how other parts of the plan must be implemented, such as the need for medication
at specific times or the need to avoid direct sunlight because of the effects of medication.
In such cases, other portions of the plan must be developed and implemented with health-
care in mind.

Some individuals will have behavior support plans - that is, plans to help that person
Develop better communication and coping skills; or even possibly to change staff
behavior or to develop environments better suited to the person’s needs and desires. If so,
the behavior support plan will possibly affect implementation of other portions of the
plan. All staff members must be trained in how to implement the behavior support plan,
and special care must be taken to follow the plan exactly. A poorly implemented plan
will be ineffective.


Monitoring the Plan: All components of the individual’s plan are reviewed and
monitored on a regular basis to ensure that the plan has been properly implemented and
that it continues to address the desires and needs of the individual. If any component of
the plan proves to be ineffective or if it ceases to be useful, an interim Support Team
meeting is held to make adjustments.

Annual Assessment. Every year the team meets to re-assess the desires and needs of the
individual and to evaluate the overall success of the plan. The true test of the planning
process is whether or not the individual has moved towards attainment of his/her desired
outcomes over the past year. Each year a new plan is written to meet the new and
ongoing goals of the individual.

Limitations of the Plan
A plan developed for one location and set of circumstances may not work well in another location and with
another set of circumstances. Any major change in an individual’s life requires that the plan be reviewed
and, if necessary, revised.

Everything that might happen in a person’s life cannot be anticipated. Possible risks should be considered,
but restrictions should not be set based on something that “might happen.” Otherwise, no one would ever
cross a street because they “might be hit by a car.” Rather, we take precautions when crossing the street,
in order to prevent an accident.

The Plan is not the end within itself. The Plan is part of the process that takes an individual to
achievement of his/her desired outcome. The Plan is simply the map for the action that must be taken.

                          Handout: Example of a well-developed Plan. Point out the various parts of the
                          plan and briefly discuss how they were developed.


A Right and a Responsibility, not a goal
People with developmental disabilities have experienced Degradation, Separation, Segre-
gation, Congregation, and in some cases Integration. In our efforts to “help” them, we
have subjected them to Testing, Training, Mainstreaming, Categorizing, Specializing, and
Normalizing. We have used Psychology, Psychometry, and Psychiatry, as well as
Astrology, Mythology, Craniology, Numerology, Physiology, and finally Technology.

Unfortunately most of our efforts have been toward trying to make people with
developmental disabilities more like us, whoever we are, instead of increasing our
appreciation of them. Our real efforts should have been directed at ourselves, because
what we seek for them is Inclusion.

The goal has been elusive because we couldn’t define it. Perhaps we couldn’t define it
because it should never have been a goal. It was, instead, a fact overlooked. It was a
right. To view Inclusion as a goal, we accept that people who have historically been
“locked out” are now invited to “come in.” This definition has two weaknesses. Firstly,
it assumes that “someone” has the authority to invite them in, and secondly, by that
authority, “they” must have had the right to lock them out.


We must accept that people with disabilities “get in” via the same method by which
people without disabilities get in. They are “in” because they are born. There are no
invitors and no invitees.

        Inclusion is recognizing that we are “one” even though we are not the “same.”
        The act of inclusion means fighting against exclusion and all of the social
        diseases exclusion gives birth to - i.e. racism,sexism, handicapism, etc. Fighting
        for inclusion also involves assuring that all support systems are available to those
        who need such support. Providing and maintaining support systems is a civic
        responsibility, not a favor.
                                       Shafik Abu-Tahir, leader of New African Voices
                                       Inclusion Press, Philadelphia, 1995

Every citizen born has a right to his/her own place in society. Likewise, every citizen has
the responsibility to protect that right for every other citizen.

Social Stigmas: Historically, society has identified certain groups as being outside its
norms. Such groups had differences, either in appearances or abilities, that the rest of
society valued negatively. Once such differences were recognized and classified, people
bearing them were separated from the rest of society. Those differences came to be
recognized as stigmas and the people as deviants.

In the 1600s, in colonial Salem, anyone identified as a witch was separated socially from “normal”
society. Her neighbors shunned her. In some cases, a woman on trial for witchery underwent a test. Her
hands and feet were bound, a large rock was tied to her body, and she was thrown into a deep lake or
pond. If she magically freed herself and did not drown, she was declared a witch and put to death, usually
by being burned at the stake. If she could not free herself and she drowned, then she was declared
innocent. All groups perceived as “different” have been judged with similar logic.

In 20th century Europe, Adolph Hitler gathered groups of people whom he declared to be “imperfect” into
concentration camps. In most cases their imperfection was simply that they were born into a non-Aryan
race. Many were subjected to physical and sexual abuse, including the undergoing of various medical
experiments. Hundreds of thousands were put to death. An additional tens of thousands of people with
mental and physical disabilities were executed. Hitler considered them inferior and unfit to live, and he
wanted them “exterminated” like vermin.

Whenever society labels a group and separates it, either socially or physically, that group
becomes less than human in the eyes of some. As recently as the 1970s, a few medical
doctors believed that people with mental retardation did not feel pain “like other people.”
Therefore, they did not anesthetize a patient with mental retardation who needed stitches
to close a wound.

We have labeled our citizens with developmental disabilities and separated them, and
thus stigmatized them. Our task is not one of integrating or including them in a society in
which they had no part, but it is to stop excluding them from the society into which they


were born. We must remove barriers which stand in the way of their taking their rightful
places in society, and we must provide them the supports they need with which to do that.

Misconceptions: Not too many years ago people commonly believed that individuals
with mental retardation and other developmental disabilities would always be dependent;
that is, they could not learn and would always need someone else to take care of them.
This usually meant living at home with no support or living in an institution with other
people with developmental disabilities.

Today we know that everyone can learn, but each at his/her own pace and by varying
methods. We realize that most people, even with severe mental retardation, can perform
useful work with the right supports, and they can enjoy the normal patterns of life.

Some people still believe that all persons with mental retardation are alike. Common
sense dispels that myth when we realize that all people are individuals with individual
characteristics. People with mental retardation are individuals and, like everyone else,
have their own characteristics and habits, their own fears and dreams, their own likes and
dislikes. However, the myth exists because groups of people with mental retardation who
have lived together in congregate settings all seem to behave in similar ways. This
happens, not because the individuals in these groups are all alike, but rather because they
have learned to behave similarly through modeling.

Some people are confused about mental retardation and mental illness. They don’t
understand that these are two completely different and separate conditions. While it is
true that some people who have mental retardation also have mental illness, the
percentage of occurrence in people with developmental disabilities is no greater than the
percentage in the general population. Mental retardation is not mental illness.

Many myths and misconceptions have arisen because people with mental retardation and
other developmental disabilities have been kept away from society. Many have lived
their lives in closed environments in institutions and even in some private homes, and
consequently they have not learned how to live in open society. Most things are learned
through experience and no one learns what s/he is not given the opportunity to learn.

Classroom environments are artificial. They are good for imparting of knowledge -
groups of facts and figures and other inert information. Students seldom gain
understanding of that knowledge without experiences with which to relate it. Similarly,
people who live in artificial environments have little understanding of general society and
the norms of life because they haven’t experienced them. Application is the proof of all
learning. Most people learn how to live in society by doing it.

Inclusion, then, is not only every person’s right, it is absolutely necessary for anyone’s
successful life, whether the individual has disabilities or does not have them.

                       Transparency: The only label that counts is the student’s name. The only
                       criterion for inclusion in a classroom is breathing.


                                                                      Martha Forest, educator, writer and editor

Including People with Disabilities... Education: Researchers have explored many aspects of Inclusion in education,
including the questions of whether Inclusion may result in less time devoted to learning
for students without disabilities or curricula that are below their learning abilities.
Research results say that neither of these occurs. Curricula are not “watered down,” and
learning time is not negatively affected. When working in a classroom in which students
with disabilities are included, students without disabilities continue to learn at the same
pace as they learned in classrooms that were not inclusive.

Imitation and role modeling are powerful learning tools. When people with develop-
mental disabilities are surrounded by people who can’t talk, walk, or feed themselves, as
in congregate settings, they don’t learn to talk, walk, or feed themselves effectively.
When surrounded by effective role models, they learn to do everyday things typically.

Similarly, when people without disabilities witness others helping people with disabilities
to problem-solve their everyday situations - or better yet, when they are involved in the
helping - their own growth and maturation are greatly enhanced One study discovered
that children without disabilities, after attending classes with peers with disabilities,
demonstrated sophisticated judgments and problem-solving techniques when presented
with scenarios of common situations.

In most research projects, students both with and without disabilities, as well as teachers and aides, all
reported positive experiences and improved attitudes. Students without disabilities became more tolerant,
empathetic, and understanding of students with disabilities. Students with disabilities enjoyed more
relationships and friendships with students without disabilities and consequently had more experiences and
greater social and academic growth. Teachers and aides grew professionally, enhancing their skills used
in teaching both groups. All groups gained greater self-confidence..

Schools in several states have gone to Inclusion programs. The schools that have
achieved the most success are those in which extra training has been provided to teachers
and aides and in which there is strong administrative support. A University of Oregon
report pointed to four educational practices that ensure the success of Inclusion programs
and which, not incidentally, can benefit all students:
        1. Diversity as the new norm. The student population is constantly changing
           and becoming less and less homogenous in many ways.
        2. Collaborative teaching arrangements. When teachers work together, such
           as special education teachers working with regular classroom teachers to effect
           Inclusion in the school, they achieve better problem-solving, create more
           effective strategies, and model people skills for students.
        3. Flexible school structures. Adaptable physical arrangements better fill
           student needs and foster varied instructional approaches. The flexibility of
           adaptable scheduling is needed as well.


        4. Performance-based and alternative assessments. Performance expectations
           should be as individualized as instruction methods because ways to
           demonstrate learning are as varied as the students themselves.

The public schools seem to be the starting point for most social reforms, the philosophy
being that if you can plant the idea into young minds, they will carry it on as adults and
pass it on to their children. Rights issues especially have a history of launching their
success from the classroom. Hopefully, one day people can look back at this and
previous times concerning students with disabilities and feel the same surprise and
disdain that we now feel when we look back at the times when women were not allowed
to own land or vote and when black children were accompanied by marshals to a local
“white” school.
                          Handouts: Common Recommendations of National Curriculum Reports;
                          Benefits of Inclusive Classrooms for All; and Capsulized experiences

                          Activity: Workplace Inclusion Quiz as “pretest” for Work Force section. the Work Force: Recent developments in education, assistive technology, and
transportation have made it possible for many people with disabilities to enter the work
force for the first time, and some of them have developmental disabilities. Studies show
that employees with disabilities are highly motivated and productive, probably because
they feel a greater need to prove their capabilities.
          97% hold better-than-average safety records
          90% maintain above-average job performance
          86% have better-than-average attendance records

Reasonable accommodations make it possible for many people with disabilities to hold
paying jobs and contribute either partially or totally to their own support.

A reasonable accommodation may be as simple as two pieces of tape stuck to a table and between which
the employee can measure the number of items to be placed in a box, or as sophisticated as a hover chair
in which to travel over rough terrain in a geological field or a construction yard.

A job coach may provide training for an employee with mental retardation so that the
individual can learn the job at his/her own pace and with the necessary amount of
instruction. Once the job is learned, the job coach “fades away,” and the individual is
able to perform the duties and provide a valuable service for the company. Community Lifestyles: A distinctive difference exists between Presence and
Inclusion. An individual’s presence in the community does not ensure his/her inclusion.
A parked car has physical presence. To experience inclusion, an individual must have the
opportunity to interact, to take part in the community’s activities, and to form
relationships with other community members.


A friend, an acquaintance, a church member, a club member, a volunteer, a shopper, a
coworker, a schoolmate, even a consumer of services - all of these (and many more) are
parts of the community. The people who fill these roles may or may not have disabilities,
but people with disabilities can definitely fill the roles.

Inclusion means contributing to the community and being a good citizen. It may mean holding a job or
volunteering at the hospital. It may mean belonging to the Rotary Club and the Methodist Church. It may
mean keeping your yard clean and mowed and maintaining your property or picking up the trash from in
front of your apartment building - or encouraging someone else while they do it. It may mean cheering for
the local team or putting your flag out on the fourth of July or congratulating the community’s oldest
citizen on her hundredth birthday or taking cookies to the new neighbors. It definitely means making the
neighborhood a nicer place in some way, if only by being the one person on the block that everyone knows
they can count on for a greeting and a smile. It means that presence is recognized, acknowledged, and
accepted to the extent that most people don’t give it a second thought.

When individuals with disabilities must rely totally on agencies for their existence in the
community, they will probably never experience full inclusion. The more the agency
provides, the less community involvement the individual has. The individual must
develop contacts in the community and begin to relate to others on their turf and by their
terms. This can happen only when agency professionals and staff relinquish control and
begin to serve as organizers, mobilizers, and guides to help the people they serve become
community members.

Variety and innovation are keys to community inclusion. It does not come as a
prepackaged program. What works for one person in one location may not work for
another person or in a different location; and success always depends on knowledge of the
person and familiarity with the community.

The staff must know the person well; they must know that person’s likes and dislikes and understand
his/her abilities and weaknesses, strengths and foibles. Likewise they must know the community. They
must understand the spirit of the community and know what is readily acceptable and what is not. They
must be able to identify the members of the community who will openly and without prejudice receive an
individual with disabilities so that they can be examples to the rest of the community. The staff must know
the places in the community that are most easily accessible in order to introduce the individual to the other
citizens without being intrusive or obnoxious.

 Although presence alone does not constitute inclusion, it is certainly the beginning of
inclusion. The first appearance of an individual with disabilities in a public place may be
startling or disconcerting to some people; but the second or fifth or tenth appearance is
not even noticeable. In that case, presence is the beginning of inclusion, especially if
those people have exchanged a greeting and a smile with the individual each time. With
very little effort, greetings and smiles turn into pleasantries and conversations and
discussions, and finally to acquaintanceship and even friendship.


The first words exchanged may come from the staff person, and the staff person begins to
include the individual in the exchanges. By this simple method, a regular walk in the
park can evolve into an individual’s inclusion in his/her community.

Joe has cerebral palsy and mental retardation. He uses a Speech Pac and a wheelchair. Every day Joe
and Nathan, a staff person, go for a stroll in the park in the cool of the morning. They greet other park
goers with a nod and a smile. Within a very short time after they started going to the park, they learned
who the other people were who visited the park regularly at that time of day. Some of them were walking
their dogs.

After a few days of seeing a particular man and his Irish Setter and exchanging greetings each time, Joe
and Nathan stopped and waited when they saw the man approaching.

         “That’s really a nice dog,” Nathan said to the man. “What’s his name?”

Upon being told that the dog’s name was Clint, Nathan said to Joe, “Clint’s a nice dog, isn’t he, Joe?”

         Using his Speech Pac, Joe responded that he was.

Nathan introduced himself and Joe and learned that they were talking to Mack. In the ensuing days they
exchanged a few pleasantries each time they saw Mack. Soon those exchanges became conversations and
Mack obviously felt more and more comfortable with Joe and his Speech Pac. It wasn’t long before Mack
was initiating the conversation, not only with Nathan but with Joe as well. Mack became a friendly
acquaintance and finally a friend. Mack and Clint became such regular figures in Joe’s life that he
programmed their names into his Pac.

Joe and Nathan cultivated other friendships in the park. Similarly they became acquainted with shoppers
as well as clerks in the local stores and at the post office. Joe was out and about in his community and the
community truly became “his.” In a couple of years, when Nathan took a new job and moved away, it was
Joe who introduced Michael, his new staff person, to his friends and neighbors.

The methods by which Joe became included in the community were simple and natural and are the same
methods by which most of us become acquainted with new neighbors. Unfortunately, many people with
disabilities never have those experiences because professionals and staff members don’t get them out often
enough and they don’t make the effort to inject themselves and the individuals into community life. Some
are shy and uncomfortable with initiating conversation with strangers. Others are protective and afraid
the individual might be rejected. Others have their own reasons. Whatever the reason, if the effort isn’t
made, Inclusion will never occur.

Certainly not everyone wanted to be Joe’s friend. In fact, most people know someone who doesn’t
particularly want to be with them. Very few people are liked or sought out by everyone. However, Joe has
many friends in his community and he is definitely a welcome part of the neighborhood.

Eliminating Barriers
Physical Barriers.
The Americans with Disabilities Act has eliminated a lot of physical barriers for people
with disabilities. It required accessible entrances and exits to public places operated by
both public and private entities. It required that aids and services be provided to people


with hearing and vision losses so that they might access the same public accommodations
that others use. It required that service animals be allowed in public places for the benefit
of those who use them to aid their own independence.

The Image Barrier.
Sometimes the non-physical barriers are more insidious than those physical barriers
which can be easily seen and removed. One of the barriers is image, including the image
of identified “intelligence.” People with mental retardation are often identified by their
mental ages or IQs. These are descriptions of how a person learns, not measures of how
much s/he can learn, and they were designed for use by people who develop training
programs and psychological plans for the individuals who need them.

People can learn how to function in the community regardless of IQ or mental age, and you do a great
disservice when you limit a person’s potential with such an artificial standard. Mental age and IQ do not
account for adaptive functioning, which can take an individual all the way to the top rung of the social

Everyone develops skills through adaptation, or adaptive functioning. Cinderella became the princess
through the decorative support of a fairy godmother and a lot of adaptive functioning. Abraham Lincoln
went from a log cabin in Kentucky to the White House by way of help from his supporters and a lot of
adaptive functioning. A person with mental retardation goes from a life of sheltered and protected
existence to a life of independence and real experience with the right amount of support and some adaptive

Therefore, you must stop limiting or holding back people with mental retardation because of IQ levels and
mental ages and leave those figures to the people who can put them to good and appropriate use.

A “savant” is someone with mental retardation who has a special talent. The movie Rainman portrayed
the life of a young man who had a special talent with complicated numbers. In recent years society has
enjoyed the acting talents of a young man with Down Syndrome who performed in his own television series
- Chris Burke, who played “Corky” in Life Goes On.. Concert-goers were enchanted by the abilities of
Leslie Lemke, a young man with both blindness and mental retardation who learned to play the piano by
listening to Liberace and became a concert pianist.

These people exhibit talents that are considered extraordinary even in people without disabilities. The fact
of their disabilities draws greater attention to their special talents and makes them seem even more

                           Transparency: It takes no special talent to live in the community.

It takes no special talent to live in the community, but because society has devalued
people with disabilities and given them few opportunities to succeed, other people are
often surprised and impressed when someone with disabilities lives independently. The
successful person with disabilities is viewed as someone with extraordinary talent when
actually s/he is simply exercising personal and civil rights and overcoming the barriers
that have been artificially placed on the path.

Whose house is it?


Image can be created in an instant over the telephone. When a friend calls for Joe Smith
and someone at Joe’s house answers and says, “XYZ Group Home,” or “ABC Agency,”
the caller may think s/he has reached a wrong number. At the very least, such a greeting
seems to emphasize that Joe has a disability and needs some kind of support.

The provider agency writes the paychecks, but the staff actually work for the individual;
and no matter who pays the rent, the home belongs to the person(s) living in it. In a
group home or anywhere else, a simple “hello” will suffice, although in a private home
the response could be, “Smith residence.”

In an institution, the unit telephone is answered with the official name of the residence,
such as “XYZ Cottage,” or with the name of the person answering, i.e. “This is Jane Doe”
(or by any other method officially established by the facility). However, if residents have
telephones in their rooms, and if staff must occasionally answer them, the greeting
should be a “hello,” or it should indicate the name of the person whose phone is being
answered, as with “Joe Smith’s room.”

If you remember that the individual served is the real employer and that without that
person there would be no job, it isn’t hard to decide how to answer the phone. It seems
like a minor point, but small things quickly add up into big things - especially when
you’re creating an image.

                       Handout: Whose house is it?

Making Inclusion Happen
Some Conformance Creates a Good Image: Obviously, society has rules by which all
of us live. We dress by a set of rules. We use language that we know is acceptable. We
respect other people’s property. If we don’t, then sections of society will exclude us.
Cleanliness is one of those rules. Society expects us to maintain a certain level of
cleanliness. If Tom has spent the day planting trees, he will perspire and get dirty. That’s
okay, and while he is on the job his appearance is acceptable. But Tom is expected to
shower and change clothes before he goes to his Lodge meeting that night. Otherwise,
members of the Lodge will not want to associate with him. They will consider him dirty
and inappropriately dressed, and they won’t like the odor he has developed.

When a small child gets upset and throws a tantrum in a public place, people generally
overlook it. If a 30-year-old man has a similar tantrum, people are shocked and they give
him a wide berth. Later, if they see that same man in another setting and behaving
appropriately, they still shun him because they remember his previous behavior. He
might be able to overcome that image with some people, but it will take a long time and
involve his being seen often in public and making no social errors.

People who have not lived in the community usually have not learned all of the rules of
living in polite society. As adults they must learn quickly the things that most people
learned throughout all their growing-up years. They can learn them, and you must see


that they have that opportunity. They will need some instruction, but mostly they will
learn the way everyone learned - by doing. Often tolerance must be built up by engaging
for short periods of time and lengthening the experience with repeated efforts.

Doing typical things in typical ways at typical times and in typical places teaches all of us
the rules of society. As children, you did those things with your parents or teachers or
other adults by your sides taking you through them step by step. As support staff, you
take the people you work with through those experiences, guiding them all the way, until
they learn the rules and methods and are able to perform them on their own.

                          Activity: Mary has never been shopping for clothes. What are the things Mary
                          must learn in order to be able to buy her own clothes? How will she learn them?
                          (The same way everyone else does - by doing them!)
                          As a group, make a plan and write it on the flip chart.

The image barrier is the hardest to overcome and one that can only be overcome by the actual presence of
the individual in the community. Once that barrier is removed, Inclusion will no longer be elusive. People
with mental retardation and other disabilities will hold their natural places in the community - the places
to which they have a birthright; the places to which all of us have a right by the fact that we were born.

As the name suggests, the purpose of the Quality Assurance program is to assure that
individuals receive quality services, as defined by the individual and outlined by state and
federal guidelines and regulations. In DDSD, Quality Assurance staff monitor activities
to assess the integrity of the services provided to individuals with developmental
disabilities and the performance of those who provide them.

How It Works
Quality Assurance is Everyone’s Responsibility. As employees of or contractors with
the state, everyone has the responsibility for seeing that programs are delivered according
to regulations and recommended guidelines. You are obligated to ensure that the services
paid for by the government are the services rendered. More important, you have a moral


obligation to the individuals served. They are the real employers. You are working for
them, and whether you are paid directly by the state or by a contracting agency, your first
concerns must be the individual served and his/her safety, welfare, and development.

Remember that government funds come directly from the people. Since your tax dollars
are funding the services you provide, make sure that you (the people) are getting what you
bought. Would your family and neighbors feel cheated if they saw you performing your
duties with the individual with whom you work, or would they feel they got a bargain?

While quality assurance is everyone’s responsibility, the state and the federal govern-
ments take more formal steps to ensure that they get what they bought and that the
individuals you serve are receiving the kinds of services they need.

Case Managers perform Quality Assurance activities. They make monthly
assessments to determine if the needs and preferences of the individual are being
effectively addressed by providers and that contractual responsibilities are being met.
Annually they facilitate meetings in which individuals and families are given the
opportunity to consult with the entire team regarding new and ongoing needs and desires.

OK-AIM works to ensure service enhancement. Oklahoma-Advocates Involved in
Monitoring, under the direction of the Oklahomans for Quality Services Committee
(OQSC), monitors activities of service providers. When they identify conditions which
might place individuals at imminent risk, they report those condtions to the:
        a) statutory investigatory authority;
        b) DDSD area office; and
        c) provider agency chief executive officer (CEO) or designee.
Each official has steps which s/he must take to resolve the problems, including the
designation of staff to track the resolution of each concern and advise OK-AIM of the
steps taken toward resolution.

Agencies providing contract services participate in performance surveys which are
conducted by the DDSD Quality Assurance Unit. Such surveys assess compliance
with contractual expectations, and they are conducted annually with providers of resi-
dential, vocational, or non-medical in-home supports for six or more individuals. They
are conducted as deemed necessary for providers serving fewer than six clients. QA staff
also investigate allegations of non-compliance with provider agencies’ contracts.

The unit not only assesses compliance with contractual provisions, but they also assess
the success of the services provided. Noncompliant or ineffective providers may have
sanctions initiated and/or contracts may be terminated.

The QA Unit assesses the delivery of services and the realization of expected outcomes for a sample of
people served by each provider agency. The sample is representative of developmental characteristics of
the population served and the array of supports provided by the agency. The effectiveness of services
provided is rated by the surveyors and providers must adhere to recommended improvements.


In addition to the performance surveys, QA staff also conduct person centered evaluations and
administrative inquiries. The person-centered evaluations focus on individuals rather than agencies and
promote the realization of valued outcomes in the person’s life. Administrative inquiries investigate
specific allegations of non-compliance with provisions of the provider agency’s contract.

Public ICFs/MR are also scrutinized closely. The resource centers undergo a “look-
behind” survey at least annually. It may be conducted by federal surveyors from the
federal Health Care Financing Agency (HCFA), or surveyors from the State Health
Department may act in their stead. If deficiencies are found, the institution is given a
period of time in which to make corrections. If corrections are not satisfactorily made,
federal moneys, which total up to seventy percent of the funding for operations, may be
pulled either temporarily or permanently.

Periodically throughout the year, the DDSD Quality Assurance Unit conducts its own
surveys of the institutions, both to ensure quality services and to find any problems that
may need to be corrected before the annual federal inspection.

No survey will find all the problems. This fact underscores the need for individual
responsibility. It takes every employee keeping alert for problems and giving his/her best
on a daily basis to ensure the delivery of quality services to Oklahoma’s individuals with
developmental disabilities.


In times past, the more severe a person’s physical disabilities, the less independent that
person could be. Modern technology has changed that situation for many people. Today,
motorized wheelchairs, hovercraft, public transportation for people with disabilities, and
other innovations have made it possible for people who cannot walk to get out into the
community and take care of their business, go shopping, or just have fun.
Communication devices enable people who cannot speak clearly to express themselves.
Even people who can move nothing but their eyes are operating specially-designed

The field of technology has produced some truly wonderful and amazing aids to enable
people with disabilities to do things for themselves that they previously were unable to
do. However, useful innovations need not always be expensive or complicated.

Able-Tech Presentation
Low-Tech Bob.

                                    (End of Training)


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